This thesis argues that truth-telling in high level (nursing home) aged care is a ... nurses have about the aged care facility â how they describe residency as 'Home ..... home, she had observed an agitated resident calmed by a telephone call .... the qualitative research sample is non-representative of the total population.
TRUTH-TELLING IN AGED CARE: A QUALITATIVE STUDY
Anthony G. Tuckett RN, DipAppSc(Nautical), BNur, PostGradDipPhil, MA
Submitted in total fulfilment of the requirements of the degree of Doctor of Philosophy
November 2003
School of Public Health Faculty of Health Queensland University of Technology
KEY WORDS Truth-telling, aged care, nursing home, meaning, harm, autonomy, perspectives, caring, time, social constructionism, symbolic interactionism, personal care assistants, registered nurses, residents, thematic analysis, grounded theory, personal journal, group discussion, interview, researcher field notes, rigour, atypical case, member checking, triangulation, thick description, peer review, relationship, role, residency
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ABSTRACT This thesis argues that truth-telling in high level (nursing home) aged care is a fundamentally important aspect of care that ought to reside equally alongside instrumental care. The health of the resident in a nursing home, as with individuals in other care contexts, is directly linked to care provision that allows the resident to be self determining about their care and thus allows them to make reasonable choices and decisions. This qualitative study explores the meaning of truth-telling in the care providerresident dyad in high level (nursing home) aged care. Grounded within the epistemology of social constructionism and the theoretical stance of symbolic interactionism, this study relied on oral and written text from care providers (personal care assistants and registered nurses) and residents. Thematic analysis of data relied on practices within grounded theory to determine their understanding and the conditions and consequences of their understanding about truth-telling in the nursing home. Through an understanding of the relationship-role-residency trinity, truth-telling in high level (nursing home) care comes to be understood. It has been determined that the link between truth-telling and the nature of the care provider-resident (and residents’ families) relationship is that both personal carers and nurses in this study premise their understanding of truth disclosure on knowing a resident’s (and resident’s family’s) capacity for coping with the truth and therefore catering for the resident’s or family’s best interests. The breadth and depth of this knowing and how the relationship is perceived and described determine what care providers will or will not tell. That is, the perceptions both personal carers and nurses have about the relationship – how they describe themselves as ‘family like’, ‘friend’ and ‘stranger’, has implications for the way disclosure operates and is described. Additionally, how care providers perceive and understand their role determines what care providers will or will not tell. That is, the perceptions both carers and nurses have about their own and each other’s role – how they describe themselves for example as ‘hands-on’ carer and ‘happy good nurse’ has implications for the way disclosure operates and is described. Furthermore, care providers’ meaning and understanding of truth-telling in aged care is not possible in the absence of an appreciation of how the care providers give
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meaning to and come to understand the care circumstance – residency, the aged care facility, the nursing home. That is, the perceptions both personal carers and nurses have about the aged care facility – how they describe residency as ‘Home away from Home’ (and what this means), as a place of little time and a plethora of situations have implications for the operation of truth-telling as a whole. Recommendations from the study include the implementation of a telling audit to better serve the truth-telling preferences of residents and the reorientation of care practices to emphasise affective care (talk rather than tasks). Furthermore, it is recommended that changes occur to the care provider roles, that care providers define themselves as facilitators rather than protectors, and education be ongoing to improve communication with and care of residents with dementia and those dying. Finally, the language of residency as ‘home’ needs to capture an alternate philosophy and attendant practices for improved open communication.
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TABLE OF CONTENTS CHAPTER 1
INTRODUCTION
1
1.1
Introduction: The Research Project 1.1.1 Researcher’s personal & professional experiences
1 2
1.2
Research Aims and Objectives
3
1.3
Setting and Participants
3
1.4
Research Approach
4
1.5
Significance of Research
5
1.6
Limitations of the Research
7
1.7
Organisation of Thesis
7
CHAPTER 2
LITERATURE REVIEW
9
2.1
Introduction
9
2.2
Definitions and Terminology: Continuum and Context 2.2.1 Types of truth 2.2.2 Forms of deception 2.2.3 Deception and lying 2.2.4 Truth-telling as harmful 2.2.5 Communication: Truth-telling and deception
9 10 11 12 13 13
2.3
Reasons For and Against Truth-telling 2.3.1 Reasons for truth-telling: autonomy 2.3.2 Physical benefit 2.3.3 Psychological benefit 2.3.4 Intrinsic good
14 14 14 15 16
2.4
Reasons Against Truth-telling: Autonomy 2.4.1 Physical benefit 2.4.2 Psychological benefit: Preventing harm to others 2.4.3 Psychological benefit: Preventing harm to self 2.4.4 Uncertainty principle
16 17 17 18 19
2.5
Practitioners, Opinions, Clinical Situations and Truth-telling 2.5.1 Truth-telling and the older patient 2.5.2 Truth-telling and the patients’ perspectives 2.5.3 Truth-telling and the doctors’ perspectives 2.5.4 Truth-telling and nurses’ perspectives
19 20 21 22 23
2.6
Relationship: Family Relationship, Parentalism and Health Effects 2.6.1 Autonomy, therapeutic privilege and paternalism 2.6.2 Determining another’s interests: limited knowing
25 27 30
2.7
Role: Caring Role and Carer Characteristics 2.7.1 Caring: informing and honesty 2.7.2 Communicating, care encounter and control
32 34 36
2.8
Nursing Home: Residency and Human Interaction 2.8.1 Time to care: limited knowing
39 42
2.9
Summary: Literature Review
44
8
CHAPTER 3
INTERPRETIVE FRAMEWORK AND METHODS
46
3.1
Introduction
46
3.2
Interpretive Framework 3.2.1 Social constructionism 3.2.1.1 Summary: Social constructionism 3.2.2 Symbolic interactionism 3.2.2.1 Summary: Symbolic interactionism
46 46 49 49 52
3.3
Research Design 3.3.1 Rationale for qualitative research 3.3.2 Overview of research design 3.3.3 Ethics clearance 3.3.4 Negotiation of entrée 3.3.4.1 Prior to contact with the residential aged care facility 3.3.4.2 Contact with the facility’s Administrator and Manager 3.3.4.3 Information sessions with potential participants 3.3.4.4 Setting up interviews: Care provider 3.3.4.5 Setting up interviews: Residents 3.3.4.6 A failed negotiation of entrée
52 52 53 54 54 54 55 55 57 57 58
3.4
Methods 3.4.1 Introduction 3.4.2 Personal journal 3.4.2.1 Rationales for the use of personal journals 3.4.2.2 Personal journal limitations 3.4.2.3 Nurse’s story as guide 3.4.2.4 Rationales for nurse’s story as guide 3.4.2.5 Limitations to nurse’s story as guide 3.4.3 Group Discussion as a ‘focused group depth discussion’ 3.4.3.1 Rationales for group discussion 3.4.3.2 The researcher as group facilitator 3.4.3.3 Group formation 3.4.3.4 Strategies: Introduction, tape recording, field notes and conclusion 3.4.3.5 Characteristics: participants, locale, size, duration and frequency 3.4.3.6 Group Discussion limitations 3.4.4 Interview 3.4.4.1 Rationales for interview 3.4.4.2 The researcher as an interviewer 3.4.4.3 Interview formation 3.4.4.4 Strategies: Introduction, tape recording, field notes, interview guide and conclusion 3.4.4.5 Characteristics: Participants, frequency and average duration 3.4.4.6 Interview limitations 3.4.5 Field journal and field notes 3.4.5.1 Rationale for field journal 3.4.6 Field journal: field note style, format and idiosyncrasies
59 59 59 60 61 62 62 64 65 67 69 69
Summary of research design: data collection
85
3.5
70 72 73 75 75 76 76 77 80 81 82 82 83
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CHAPTER 4
DATA MANAGEMENT AND ANALYSIS
86
4.1
Introduction
86
4.2
How Analysis is Understood 4.2.1 Thematic analysis informed by grounded theory 4.2.2 Analysis informed by social constructionism and symbolic interactionism 4.2.3 Organising, coding, writing, theorising and reading
86 86 87 88
4.3
Data Organisation 4.3.1 Codes, files, computer files and tapes 4.3.2 Field journal and field notes
89 89 89
4.4
Analysis: An Overview 4.4.1 Reading: Literature review and preliminary study 4.4.2 Reading and theorising: auditing, transcript production and marginal remarks 4.4.2.1 Auditing: Transcript production 4.4.2.2 Transcript reading and marginal remarks 4.4.3 Coding, writing and theorising 4.4.3.1 Field journal and field notes 4.4.3.2 Theme development
90 91 92 93 93 95 95 98
4.5
Qualitative Research Sampling 4.5.1 Sample framing 4.5.1.1 Selection criteria: Getting started 4.5.1.2 Selection criteria: Participants 4.5.1.3 Group discussion and homogeneity 4.5.1.4 Interview: Purposeful (theoretical) sampling 4.5.1.5 Saturation: Constant comparison 4.5.1.6 Sample characteristics 4.5.2 Limits to sample 4.5.2.1 Gatekeeper bias 4.5.2.2 Sample frame bias 4.5.2.3 Practicality and logistics 4.5.2.4 Counter to sample limitations
99 100 100 101 102 103 105 107 108 108 108 109 109
4.6
Rigour in Qualitative Research 4.6.1 Research strategy 4.6.1.1 Researcher as instrument 4.6.1.2 Field and personal journal 4.6.1.3 Nurse’s story as guide 4.6.1.4 Tape recorder, thematic log and auditing transcripts 4.6.2 Operational techniques 4.6.2.1 Atypical (negative) case 4.6.2.2 Member checking 4.6.2.3 Triangulation: method (ological) and investigator 4.6.2.4 Method (ological) triangulation 4.6.2.5 Investigator triangulation 4.6.2.6 Thick description 4.6.2.7 Peer review
110 112 112 112 113 113 114 114 114 115 115 116 117 118
4.7
Summary: Audit Trail
118
CHAPTER 5 5.1
10
FINDINGS: RELATIONSHIP
Introduction: Findings and Discussion
120 121
5.2
Relationship: The Family 5.2.1 The nurse as a special family figure 5.2.2 Dual roles: being a nurse and family 5.2.3 Carers as resident’s parents 5.2.4 Carer as family’s friend 5.2.5 Relationship with a stranger
122 123 124 125 126 126
5.3
Knowing and Truth-telling 5.3.1 Temporal knowing 5.3.2 Experiential knowing 5.3.3 Identity (who is known?) 5.3.4 Labelling the resident 5.3.5 Infantile resident 5.3.6 The contradiction of infantilisation 5.3.7 Knowing (relational) ethic 5.3.8 Knowing: The resident’s perceptions 5.3.8.1 Truth-telling and knowing 5.3.8.2 Knowing and relationships 5.3.8.3 Know-how and know-what
128 129 133 135 137 137 139 139 140 141 142 142
5.4
Care in their Best Interest 5.4.1 The priority of care 5.4.2 Pander other’s priority 5.4.3 ‘Other’ as a priority
144 144 145 146
5.5
Trusting Relationship 5.5.1 Resident’s trust 5.5.2 Resident’s know who to trust 5.5.3 Family’s trust 5.5.4 Trust as belief 5.5.5 Trusting relationship: Resident’s perceptions
149 149 150 151 152 153
5.6
Hope 5.6.1 5.6.2 5.6.3 5.6.4
155 155 158 159 161
Truth-telling and hope Hope: Real and false Hope, lies, denial Hope: Resident’s perceptions
5.7
Guilt Time - Denial Time 5.7.1 Guilt, denial and reality 5.7.2 Truth-telling and guilt-denial 5.7.3 Consequences of truth-telling and guilt-denial 5.7.4 Managing disclosure and guilt
163 163 166 167 168
5.8
Limited Knowing 5.8.1 Vagaries of knowing the family and resident 5.8.2 We don’t know them 5.8.3 Getting it right - sometimes wrong 5.8.4 Limits to knowing: Resident’s perceptions
169 169 170 171 173
5.9
Discussion: Relationship 5.9.1 Family relationship 5.9.2 Knowing and truth-telling 5.9.3 Care in their best interests 5.9.4 Trusting relationship 5.9.5 Hope 5.9.6 Guilt-denial 5.9.7 Limited knowing
174 174 178 184 185 188 190 193
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CHAPTER 6
FINDINGS: ROLE
196
6.1
Introduction
197
6.2
Role of the Personal Carer: Happy Comfort Carer 6.2.1 Division of labour 6.2.2 Division of disclosure 6.2.3 Role tension and frustration 6.2.4 Managing the division of disclosure
198 200 202 204 206
6.3
Role of the Nurse: Happy Good Nurse 6.3.1 Domain of disclosure 6.3.2 Managing the domain of disclosure 6.3.3 Role of the care provider: Residents’ perceptions
209 210 214 217
6.4
Role of the Resident’s Family: Disclosure Controller 6.4.1 Don’t tell mum 6.4.2 Role of the residents’ families: Resident’s perceptions 6.4.3 Don’t tell mum 6.4.4 Role of the doctor: Resident’s perceptions 6.4.5 Role of the resident: Resident’s perceptions 6.4.5.1 Autonomous agent 6.4.5.2 Being good 6.4.5.3 As a parent
221 222 225 225 228 232 232 233 235
6.5
Discussion: Role 6.5.1 Role of the personal carer 6.5.2 Role of the nurse 6.5.3 Role of the care provider: Residents’ perceptions 6.5.4 Role of the resident’s family 6.5.5 Role of the doctor: Residents’ perceptions 6.5.6 Role of the resident: Residents’ perceptions
236 236 241 245 246 248 250
CHAPTER 7
FINDINGS: RESIDENCY
252
7.1
Introduction
253
7.2
Residency: Home away from Home 7.2.1 Rules of engagement 7.2.2 Starved of time 7.2.3 Waiting house 7.2.4 Place of awareness 7.2.5 ‘Home away from home’: Resident’s perceptions 7.2.6 Starved of time: Resident’s perceptions 7.2.7 Place of awareness: Resident’s perceptions
254 258 259 261 262 265 267 269
7.3
Daily Reality: Truth-telling in Practice 7.3.1 Treatment truths 7.3.2 Dementia truth 7.3.3 Death disclosure 7.3.4 Dementia truth: Resident’s perceptions 7.3.5 Death disclosure: Resident’s perceptions
271 274 279 285 290 291
7.4
Discussion: Residency 7.4.1 Home away from home 7.4.2 Daily reality 7.4.3 Dementia truth 7.4.4 Death disclosure
295 295 302 305 308
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CHAPTER 8
SUMMARY, RECOMMENDATIONS AND CONCLUSION
312
8.1
Introduction
313
8.2
Relationship 8.2.1 The researcher’s thesis-truth-telling & relationship
313 314
8.3
Role 8.3.1 8.3.2 8.3.3 8.3.4 8.3.5 8.3.6
314 314 315 317 317 318 318
Resident Care providers The personal carer The nurse Resident’s family The researcher’s thesis-truth-telling and role
8.4
Residency 8.4.1 The researcher’s thesis-truth-telling and residency
318 320
8.5
Truth-telling in Practice 8.5.1 The researcher’s thesis-truth-telling in practice
320 322
8.6
Implications and recommendations for research, practice, education and policy
322
Conclusion
325
8.7
APPENDICES Appendix 1 Appendix 2
327 ‘Bending the truth’: professional’s narratives about lying and deception in nursing practice (Tuckett, 1998a)
327
Documentary evidence of research ethics clearance
328
Appendix 2.1T Time-line for research ethics clearance
329
Appendix 2.2T Process for Negotiation of Entrée for each Residential Aged Care Facility
329
Appendix 2.3T Distribution, duration and ‘completion’ of the Personal Journals
329
Appendix 2.4
Information Package
330
Appendix 2.5
Writing in your journal
331
Appendix 2.6
Nurse’s Story
332
Appendix 2.7T Distribution of the Personal Journal-Nurse’s Story according to themes throughout the data collection period
332
Appendix 2.8T Group Discussion characteristics
333
Appendix 2.9T Semi-structured, in-depth interview characteristics
333
Appendix 2.10T Strengths of the Personal Journal with the Nurse’s Story as a guide and Group Discussion as methods
334
Appendix 2.11T Strengths of the Interview as a method
334
Appendix 2.12T Strengths of the Field Journal as a method
334
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Appendix 3
Demographic Information Sheet
335
Appendix 3.1T Rationale for the development of the Interview guide
335
Appendix 3.2T Residents’ Demographics
336
Appendix 3.3T Personal Carers’ Demographics
337
Appendix 3.4T Nurses’ Demographics
338
Appendix 3.5T Field notes for investigator triangulation process
339
REFERENCES
341
14
LIST OF PUBLICATIONS and PRESENTATIONS
xv
LIST OF TABLES
xvi
LIST OF FIGURES
xvii
STATEMENT OF ORIGINAL AUTHORSHIP
xviii
ACKNOWLEDGEMENTS
xix
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LIST OF PUBLICATIONS AND PRESENTATIONS Journal Article Tuckett, A., & Stewart, D. (2004). Part I: Journals as method: Experience, rationale and limitations. Contemporary Nurse, 16(1/2), 104-113. Tuckett, A., & Stewart, D. (2004). Part II: Group discussion as a method: Experience, rationale and limitations. Contemporary Nurse, 16(3), 240-251. Conference Presentation Tuckett, A. (2002). ‘Believe me its true’-truth-telling and deception in nursing and residential aged care. Presentation at the Ageing at Home & Community Care Nursing Conference, 12th-13th February, Ausmed Publications, Brisbane, Australia. Tuckett, A. & Stewart, D. (2000). The ‘honest risk’: managing an emergent meaning of truth-telling in the nurse-aged resident relationship. Presentation at the Health and Risk II, 2nd Biannual International Conference, 3rd-5th July, St. Catherine’s College, Oxford, United Kingdom. Seminar Presentation Tuckett, A. (2003). An experience: methods, sampling and rigour (Why would you do qualitative research in a quantitative researcher’s world?). Presentation at School of Public Health Qualitative Showcase, 3rd October, QUT, Brisbane, Australia. Tuckett, A. (2000). Truth-telling: a qualitative study. Presentation at the School of Nursing (Qld) Professional Development Series ‘Palliative Care Issues’, 12th October, Queensland Cancer Fund, Brisbane, Australia. Tuckett, A. (2000). Truth-telling in aged care: a qualitative study. Presentation at the Tricare Manager Clinical Care Services Conference, 30th-31st March, TriCare, Brisbane, Australia.
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LIST OF TABLES Table 2.1
Reasons for and against truth-telling
14
Table 3.1
Nurse’s story and theme
62
Table 3.2
The main field journal format derived from Schatzman & Strauss (1973)
83
Table 3.3
Data collection (personal journal and group discussion)
85
Table 3.4
Data collection (interview)
85
Table 4.1
Questioning coded data within a theme
97
Table 4.2
Evolution of an early thematic schema becoming a more developed representation of themes
99
Theoretical implications and practical contingency governing sampling
104
Table 4.4
Total sample size
107
Table 4.5
Criteria for rigour and the ‘parallel’ terms
111
Table 4.6
Audit of the research: Truth-telling in aged care – a qualitative study
119
Table 5.1
Relationship and sub-themes
120
Table 6.1
Role and sub-themes
195
Table 7.1
Residency and sub-themes
249
Table 4.3
17
LIST OF FIGURES Figure 1.1
Overview of research design
5
Figure 3.1
Overview of research design
53
Figure 4.1
Organizing, coding, writing, theorising and reading
88
Figure 4.2
Analysis: An overview
90
Figure 4.3
Reading: Literature review and preliminary study
91
Figure 4.4
Reading and theorising: Auditing, transcript production and marginal remarks
92
Figure 4.5
Coding, writing and theorising
95
Figure 4.6
Sample framing
100
Figure 5.1
Relationship
120
Figure 6.1
Role
196
Figure 7.1
Residency
252
Figure 8.1
Truth-telling in practice
312
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STATEMENT OF AUTHORSHIP
The work contained in this thesis has not been previously submitted for a degree or diploma at any other higher education institution. To the best of my knowledge and belief, the thesis contains no material previously published or written by another person except where due reference is made.
Signed:…………………………..
Date:……………………………..
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ACKNOWLEDGEMENTS I am very grateful to a specific few and forever thankful to even more. My Principal Supervisor - Associate Professor D. E Stewart, and my colleague, Mr. D. E. Ham, have critically reviewed all that has been written. I am most grateful for their commentary.
I must also thank Associate Professor Stewart for his generous
financial support, allowing partial release from my teaching responsibilities during a data collection/analysis cycle. A thank-you also to my Associate Supervisor, Dr. ML Fleming-O’Connor, for her suggestions. Without the nursing home residents, the personal care assistants, the registered nurses the administrators and managers it would not have been possible to conduct this research. I am forever indebted to Ms. M. Stone (Manager-Nursing and Personal Care Services) who was instrumental in the research process and its sustainability over time. I am sincerely grateful. I survived and maybe even at times thrived within the research activity because of professional colleagues and family. Within the professional realm I must sincerely thank the committee of the Centaur Memorial Fund for Nurses (Queensland) who saw fit to grant me the 2001 Fellowship and so provided me with $15 000 to partially fund this project. I also acknowledge the support given to me by ACU National and my Head of School (Queensland), Associate Professor E. Davies, in supporting my release from my teaching activities to write-up this thesis. I am very thankful for the support of my nursing colleagues who ‘carried me when all was not well’ namely M. Austin, Dr. H. Beattie, R. Fisher, M. Hales, Dr. K. Mason, D. Nizette and Y. Osborne. An extra thank-you to M. Hales for her assistance with the graphics. I must also thank Ms. J. Anderson my transcriber and ACU National library staff, notably Ms. E. Mortimer and Mr. P. Finnimore. Certainly, I am also grateful to the administrative and research staff and research students at the QUT Centre for Health Research (Public Health) for their support, and for making available to me a dedicated study space during my ever changing student status. Research of this kind exists alongside a whole range of other (far more significant) human activities. My family remain more significant to me than anything I do or any material goods I may ever acquire. My entire family network have watched, waited and prayed. Finally I can say ‘thank-you all’ for your patience and prayer and ‘Yes, Sam, the PhDummy is done!’
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CHAPTER 1 INTRODUCTION We must not allow ourselves to be confused by missing the distinction between truth, the abstract concept, of which we shall always have an imperfect grasp, and telling the truth, where the intention is all important (original italics, Higgs, 1998: 37)
1.1
Introduction: The Research Project
This thesis argues that truth-telling in high level (nursing home) aged care is a fundamentally important aspect of care that ought to reside equally alongside instrumental care. The importance of truth-telling, as an aspect of care, is no less important in general clinical practice (see section 2.2: Definitions and Terminology for clarification of terms). Its importance is that truthful disclosure allows others to be self determining about their own care and thus allows them to make reasonable decisions. The health of the resident in a nursing home, as with individuals in other care contexts, is directly linked to care provision that encourages autonomy. This qualitative study explores the meaning of truth-telling in the care providerresident dyad in high level (nursing home) aged care. Relying on oral and written text from care providers (personal care assistants, registered nurses, allied health professionals) and residents, it analyses their understanding and the conditions and consequences of their understanding about truth-telling in the nursing home. Two assumptions in this thesis are that nursing home care is overtly task orientated rather than talk orientated and care providers are not good at making the right decisions about another’s best interests. The researcher will show that these assumptions are supported in the literature. This chapter explains how the research question arose and identifies the aim and objectives. In addition, it describes the setting of the research and the participants, and how these informed the approach and interpretive framework of the study. This chapter also sets out the significance of the study and its relevance to aged care. Finally, it provides an overview of the eight chapters that comprise this thesis.
1.1.1
Researcher’s personal and professional experiences
A number of personal and professional experiences, and the thoughts arising from these, have been responsible for this study. At a personal level, the researcher has been confronted by his aging mother’s indifference toward completing an Advanced Health Care Directive but who chose to abdicate any health care self determinations in favour of her son(s). Furthermore, over many years, the researcher has had lengthy conversations with his aging father about his father’s reluctance to seek more open and full disclosure about a nosocomial infection that eventually resulted in his above knee amputation. The researcher remains interested in the media’s reportage and the public’s response to political deceptions, ‘truth as a casualty’ in a time of war, big corporations’ propensity to ‘distort the truth’ and Morgan Polls that rank the public’s perceptions of nurses as the most trustworthy amongst professions. Since the closure of my research Master’s degree in 1998 (see below), the researcher has become the father of two children. Each Christmas and Easter season and with every tooth that falls, he ponders the question: ‘What would I rather-the truth that brings a tear or a lie that brings a smile?’ Professionally, the researcher is a lecturer in healthcare ethics and nursing (practice and theory) at the Australian Catholic University, Queensland. Immediately prior to this appointment in 1992, he was engaged in private nursing throughout the United Kingdom, caring mostly for aged residents in their own homes. Here, he was challenged by the aged person’s capacity and forthrightness to be self determining even when this appeared to forgo sound nursing practices that were deemed to be (at least) physiologically in the client’s best interests. Over the course of my University tenure, I have accompanied numerous groups of undergraduate nursing students into aged care (nursing home) for their clinical practicum. On these occasions, I have observed the care providers’ task orientation to care ahead of any affective care component, namely, meaningfully talking with residents. During some postgraduate studies in philosophy in 1995, the researcher became interested in the Socratic ‘noble lie’. This interest resulted in a qualitative, applied ethics research thesis (Master of Arts) titled Lies and deception in Nursing Practice (1998d). The published version of this preliminary study is provided in Appendix 1.0: ‘Bending the truth’: professional’s narratives about lying and deception in nursing practice (Tuckett, 1998a) and is referred to in Chapter 3 as the source from which the Nurse’s Story as guide originated.
Finally, during a Health care ethics tutorial in 1999, a second year undergraduate student recounted the following story. Working as a personal care assistant in a nursing home, she had observed an agitated resident calmed by a telephone call from his wife. It was revealed by the student that the other care providers standing by, trying to calm the man, knew that the resident’s wife was long dead. A registered nurse had made the telephone call from another extension, knowing that the ‘fudge phone call’ would have a desirable, calming affect. I am grateful to this undergraduate nursing student who shared her experience of ‘truth-telling’ in aged care, so beginning this research journey. 1.2
Research Aim and Objectives
Premised on these personal and professional experiences and the relevant literature, the research aim is to explore the meaning of truth-telling within the care provideraged resident dyad in high level (nursing home) aged care. Therefore, it took as its objectives: •
to understand why the care providers-aged residents think, feel and act the way they do about truth-telling in practice, and
•
to reveal the conditions in which this operates and the consequences of the care providers’-aged residents’ truth-telling beliefs, feelings and actions.
1.3
Setting and Participants
The multi-centre organisation used in the research represents the largest privately operated provider of aged care nursing in south-east Queensland, Australia. The organisation promotes ‘nursing centres (that) are resident focused – offering a pleasant ‘home like’ atmosphere’. At the time of commencement of the research, this organisation had a care staff (registered nurses, enrolled nurses and personal care assistants) of 166, 68 and 523 persons, respectively. Furthermore, the organisation operated twelve (12) high care (nursing home) aged care facilities representing a total of 1124 residents (beds) (name withheld, personal communication, July 27 and December 1, 1999). The high level (nursing home) aged care facilities provide nursing care combined with accommodation, support services (laundry and meals), personal care services (assistance with activities of daily living) and allied health services (physiotherapy and recreational therapy) (CDHA, 2002: 7). Specifically, five nursing homes agreed to participate. Nursing homes A, C and D are 148, 93 and 140 bed (high care) nursing centres, respectively, that provide nursing
care combined with predominately single or double bed accommodation. Nursing home B provides ‘private’ nursing care within a complex comprising 60 single rooms with ensuite. Nursing home E is a 78 bed facility comprising shared and single rooms. However, in addition, at E, ‘extra service facilities’ (single room and ensuite, personal care services and activities and valet laundry services) are available. All five of the ‘nursing centres’ provide a ‘special needs (secure) unit’ for residents with dementia. Throughout this thesis, the terms ‘care provider’, ‘nurse’, ‘personal carer’ and ‘resident’ are used. Where ‘care provider’ is used this means both the registered nurse and personal care assistant and where indicated the physiotherapist (allied health service). ‘Nurse’ refers to the registered nurse who may also be a ‘team leader’ or ‘nurse manager’. Where necessary, these later two titles are indicated in the thesis text. ‘Personal carer’ refers to the personal care assistant who provides personal care services (assistance with activities of daily living). The ‘resident’ refers to the older person who is in high level care. The participating residents range in age from 61-97 years, mostly female, and are in care due to altered mobility secondary to ‘stroke’, Parkinson’s disease or osteoarthritis. Personal care assistants and the physiotherapist are all female, ranging in age from 21-56 years with a caring/nursing experience ranging 1-37 years. With a single exception, the registered nurses are female, 38-56 years of age and have a caring/nursing years experience of 5-38 years. Chapter 4: Sample framing, details the decision rules and additional characteristics of the sample. 1.4
Research Approach
Giving due consideration to the research aim, the intended research setting and the type of research participants the researcher intended to speak with, the following research approach was taken. Grounded within the epistemology of social constructionism and the theoretical stance of symbolic interactionism, research data were collected through group discussion, personal journal, follow up in-depth interview and researcher field notes. Thematic analysis of data relied on practices within grounded theory, notably constant comparison and purposeful (theoretical) sampling. The research design comprised a number of phases (see Figure 1.1, below). These were:
Figure 1.1: Overview of research design
1.5
Significance of Research
This thesis has significance for residents in high level (nursing home) aged care. At the Australian census in 2001, nearly 2.4 million people were aged 65 years or older (13% of the population). Projections suggest that there will be 5.05 million in 2031 and it is estimated that by 2050 there will be 6.6 million people (around 25% of the population) aged 65 years and over. Furthermore, longer life expectancy means that the numbers aged 80 years and over will double during the next two decades and triple over the next fifty years to comprise over 9% or 2.3 million people in 2051. Clearly, both current and future care of the elderly is an issue for the Australian public and all care providers. There are about 3,000 aged care homes in Australia providing some 144,100 places. Of this, in 2000/01, 25.9% residential places were operated by private service providers. On average the resident is 83.2 years old. About 64% of high level (nursing home) care residents enter from hospital, 26% from low level (hostel) care and 10% direct from the community. The average length of stay is 36 months with 35% staying less than 1 year and 22% staying more than 5 years. Finally, 60% of high level (nursing home) care residents have dementia (CDHA, 2002a: 4, 7, 9, 2830). In the context of the aging Australian population and aged care generally, qualitative research findings are significant for their contribution to the knowledge base in aged care (Bowsher, Bramlett, Burnside & Gueldner, 1993). Additionally, this research is consistent with studies that have confirmed the importance of nurseresident communication for quality of life of nursing home residents (Edwards et al., 1993).
A preliminary study (Tuckett, 1998a) amongst nurse clinicians from a variety of care settings and clinical specialties identified a number of themes describing the context for, justification of and perceptions about deception and truth-telling. Findings suggest that truth-telling is contextual (Lantos, 1996), that false utterances only ever constitute a lie (Bok, 1973), that nurses perceive external authority forces them to withhold information (Lyall, 1990) and that deviations away from truth-telling rest on the belief that patient harm will be avoided and well-being promoted (McIntosh, 1977; Schrock, 1980; Bond, 1983). The current study examines both the care providers’ and residents’ perceptions about truth-telling in the high level (nursing home) care setting. Studies examining truth-telling or truth disclosure (Surbone, 1992) between nurses and patients have been carried out in cancer wards (McIntosh, 1977; Schrock, 1980; Bond, 1983), in palliative care contexts (McGrath, Yates, Clinton & Hart, 1999), amongst student nurses (Melia, 1987), within the Neonatal Intensive Care Unit (Miya, Boardman, Harr & Keene, 1991), the Coronary Care Unit (Field, 1992) and amongst nurses from medical, surgical, community and psychiatric specialties (Teasdale & Kent, 1995). However, literature surrounding truth-telling and high level (nursing home) aged care is limited. Residents’ views of truthful disclosure of diagnosis have been sought in quantitative studies focusing on Alzheimer’s disease (Erde, Nadal & Scholl, 1988), terminal illness (Blackhall, Murphy, Frank, Michel & Azen, 1995) and cancer (Cassileth, Zupkis, Sutton-Smith & March, 1980). Research is lacking about the residents’ points of view from amongst these diverse individuals who are aging or old. Misleading generalisations about old people or old age derive directly from this lack of information about meaning (Keith, 1994). Limited research has focused on both truth-telling and the care provider- resident in the high level (nursing home) care setting (Maestri-Banks & Gosney, 1997). Whilst ethnographies of nursing homes have explored the social relationships among residents and between staff and residents, the meaning and their understanding of truth-telling in this context has not been studied (Shield, 1988; Diamond, 1992; Gubrium, 1975). Practitioners and policy makers in aging find good qualitative studies
invaluable
for
evaluating
established
recommendations for future practice (Fischer, 1994).
practices
and
developing
1.6
Limitations of the Research
Throughout the Chapters 3 and 4 the researcher consistently counters limitations potentially inherent in the various methods, data management and data analysis strategies and procedures. However, research of any kind is never finite, always contingent on practicalities and vulnerable to reality. Consequently, limitations in these findings may still exist resulting from: •
the qualitative research sample is non-representative of the total population. Whilst findings are applicable to other nursing home contexts, they are not necessarily applicable to all other nursing homes.
•
limited theoretical sampling: that is, theorising needed to be checked against data from residents’ families and doctors. This did not happen as individuals from these two groups were not sampled.
•
demographic focus: literature suggests truth-telling is considered a cultural (and religious) artefact. No attempt was made to sample and thus theorise about data, accordingly.
•
site selection for the study: it may be the case that residents in ‘private’ care and residents in ‘non-private’ care perceive high level (nursing home) care differently and this may influence their perceptions about truth-telling as a determinant of self control. No attempt was made to sample data outside the single, private care provider described above.
1.7
Organisation of Thesis
The next chapter of the thesis is the review of literature. This review of literature includes definitions of terminology, critiques the notion that telling the truth is harmful, examines arguments for and against truth-telling, and analyses studies into practitioners and patients (and residents) truth-telling preferences. Additionally, the review examines literature about family relationships, parentalism/paternalism, the health related effects of being informed and in control, and studies that suggest care providers have a limited claim for knowing another’s best interests. Furthermore, this chapter analyses the caring role, examines studies that propose honesty is less important to nurses than patients and reviews the issue of control in the care encounter. The final section of Chapter 2 concerns itself with the nature of the nursing home.
Chapter Three describes and analyses the epistemology, theoretical perspective and related research methods. The chapter makes clear the epistemology of social constructionism and the theoretical stance of symbolic interactionism that determined that research data were collected through group discussion, personal journal, follow up in-depth interview and researcher field notes. The fourth chapter carefully details the mechanisms for data management and the processes for data analysis. The chapter concerns itself with the organising and coding of data, and the reading, theorising and writing about data. Consequently, discussion includes detail about the development of themes, the use of purposeful (theoretical) sampling and the numerous operational techniques that have contributed to rigour in this qualitative research including constant comparison of data, atypical (negative) case analysis, investigator triangulation and member checking. Chapters Five, Six and Seven detail findings and attendant discussion that represent the three core themes (relationship-role-residency) with their sub-themes. Finally, Chapter Eight summarises and synthesises the research according to the objectives set out in Chapter One and makes some key recommendations.
CHAPTER 2 LITERATURE REVIEW ‘It isn’t, it isn’t cancer, is it, Doctor? I haven’t got cancer?’ Pavel Nikolayevich asked hopefully, lightly touching the malevolent tumour on the right side of his neck. ‘Good heavens no, of course not’. Dr Dontsova soothed him, for the tenth time, as she filled in the pages of his case history in her bold handwriting. (Solzhenitsyn, Cancer Ward, 1968:9). Lie. The word tells the truth about untruth. You need no other – nor help from a spin doctor – to state the bald fact that the lie, more often than not the Big Lie, is used to distort and dominate the way we conduct our most important transactions (Adams, 2003).
2.1
Introduction
The following literature review focuses on four key areas pertinent to truth-telling and aged care. These four areas are definitions and concepts; reasons for and against truth-telling; practitioners’ and patients’ opinions about truth-telling in clinical practice; and the nature of the relationship-role-residency and its influences on communicating truthfully. 2.2
Definitions and Terminology: Continuum & Contexts
Truth-telling can be conceptualised as a continuum (Williams & Livingston, 1992; Ryan, 1996; Andrews, 1996; Pfiffener, 1999; Knapp & Earnest, 2000). At one end absolute truth-telling may be conceived as honesty when at the other end, intentional lying as the ‘most overt form of deception’ is recognised as dishonesty (Payton, 1984: 11; Davidhizar, 1992). In other words, a practitioner lacks honesty when not being truthful by not telling the truth (Vanderpool & Weiss, 1984). Additionally, truth-telling is contextual. Bonhoeffer (1963) believed that ethical (clinical) practice is and must be grounded in reality. Thus, the health care provider who is in touch with reality appreciates the context including the persons involved. Moreover, truth-telling is situated in the reality of the lived experience rather than existing as an isolated practice detached from any context (Lantos, 1996). Consequently, ‘(d)ecisions about truth-telling…should be continually examined as the clinical situation changes’ (Sigman, Kraut, & Puma, 1992: 768). A qualitative study of nurses’ perceptions of lying and deception in clinical practice revealed that a lie (as a misleading statement) is defined or described by reference to the context and most importantly, the nature of the relationships that comprise the
interchange. The nurses placed an emphasis on relationships in their moral reasoning (Tuckett, 1998a, 1998c; Gold, Chambers, & McQuard-Dvorak, 1995). Researchers elsewhere concluded that defining honesty as complete disclosure was ‘quite inaccurate when placed in the…social situations (they) explored’ (Turner, Edgley & Olmstead, 1975: 82). Participants conceptualised honesty as a fidelity to the maintenance of an ongoing relationship and adjusted information so as not to jeopardise that relationship. Children lie (Atkins, 1999) even while learning that truth-telling is a good and worthy action. Equally, they learn that in life being sensitive may mean saying sorry when they are not, being kind may mean expressing love for a parent’s gift that is disliked and etiquette demands being nice to others when, likewise, they too are disliked (Prus, 1982). Some may grow up utilising ‘mental reservation’ – holding in their mind’s eye a more complete and accurate account of the truth whilst uttering a partial or half-truth. These ‘mental reservations’ (Kerr cited in Barnes, 1994: 116) become regarded as the ‘adult equivalent of crossing one’s fingers’ (Barnes, 1994: 109). Furthermore, children learn that ‘phatic communication’ allows for the ‘exchanges of politeness, inquiries about health, comments on the weather’ for the purpose of ‘cementing social relationships and for which the exact meaning of the words (is) largely irrelevant’ (Malinowski, 1923 cited in Fraser, 1976: 22). Consequently, the lesson learnt is ‘to tell the truth but judge how much, to whom, for what purpose’ (Lantos, 1996: 79). That is, a child learns of the truth in relationships (Ryan, 1996). 2.2.1
Types of truth
Whilst some refer to sorts of truth (Cabot, 1978; Ha’Cohen cited in Tabak & Rachels, 1996) another has divided truth into four types – direct, factual, personal and interpretive or hermeneutical (Thomasma, 1994). A brief overview of each follows. In response to a repetitive question such as, ‘Is it meal time yet?’ a response such as ‘Yes’ represents the ‘direct’ truth. ‘Factual’ truth is illustrated by a health care provider saying, ‘There, your false teeth are on the table’. Here ‘truth that references objective reality’ is described (Thomasma, 1994: 376). A response allows the resident to pick up her teeth and be ready for meal-time. ‘Personal’ truth may be manifested within the social relationship between nurseresident or relative-nurse. This type of truth is that in which a personal insight through disclosure to another is revealed. Hence, the resident’s relative may reveal a
personal truth by saying, ‘I am having difficulty sleeping because I’m worried about Dad’. The final truth type offered by Thomasma is ‘interpretive’ or ‘hermeneutical’ truth. This type of truth is easily recognisable in daily life (Ryan, 1996). Truth is interpreted ‘in the sense that the responder looks for the reasons behind the question, and instead of responding factually to the question responds instead to those presumed or interpreted reasons’ (italics added, Thomasma, 1994: 376-77). Interpretive truth (Thomasma, 1994) may reveal itself when a nurse says nothing or deceives through partial disclosure when attempting to maintain a patient’s hope (Tuckett, 1998a, 1998b). However, ‘a major strategy for maintaining hope is interpersonal connectedness and sustaining relationships’, and an important part of achieving these relationships is open communication (Wilkinson 1996 cited in Flaming, 2000) Interpretively, a ‘good physician, aware that some may be badly damaged by being told more than they want or need to know’ makes a judgement about the patient’s requirements and preferences (Lipkin, 1979: 13). Truth-telling may not mean telling all that is known since if it is in the patient’s best interest ‘saying nothing’ may be justified (Payton, 1984; Davidhizar, 1992: 31). This possibility is supported in the analysis of truth in politics when it is claimed that secrecy may be justifiable where lying is not (Williams, 1996) or in the evidence about patients in stressful situations described as ‘monitors’ who have a high need for information and ‘blunters’ who prefer less information (Miller, 1979). 2.2.2
Forms of deception
Above, truth-telling is conceptualised as a continuum. It appears relatively uncontentious to propose that lying is a part of the broader category, or as a form of deception (Erlen, 1995). A practitioner may deceive by commission or omission (Fost & Willimas, 1992). In the first case, a practitioner may cause a patient to be deceived whilst in the latter, a practitioner may allow a patient to be deceived in circumstances that might have been otherwise prevented (Potter, 1996). Here, forms of deception exist. In the seminal study by Novack, Detering, Arnold, Forrow, Ladinsky and Pezzullo (1989a), this distinction is one between passive and active deception. Passive deception represents deception by non-disclosure, allowing another to be deceived or failing to correct a falsehood. Active deception represents deception by lying,
vague speech and equivocating. Whilst these authors acknowledge that not all nondisclosure is deception they caution that agreement about terminology is difficult (Novack et al., 1989b). 2.2.3
Deception and lying
This caution allows for a narrower focus on the terminology, namely – deception and lying. Deception can be defined ‘as a way of manipulating another’s thinking…the person comes to believe or continues to believe that p is true when p is not true’ (Erlen, 1995: 63). This is a broad conceptualisation allowing the manipulating process to be either verbal or non-verbal. Similarly, lying has been constructed as when ‘q contributes causally toward y’s acquiring the belief in p where p is a false belief’ (Potter, 1996: 338). Again, the manner in which q contributes to this false belief can be either verbal or non-verbal. This suggests, at least for some, that a practitioner can deceive and lie through speech, gesture, nodding, silence or sign language. However, a response needs to be made to this conclusion. In everyday life and in the clinical world of nurses, the ‘false utterance’ or ‘deceptive statement’ is recognised as a lie and is distinct from other deceptive practices (Kant, 1992: 210; Bok, 1973: 234; Tuckett, 1998a). This view accords with types of deception namely, falsification, concealment and obfuscating (Burgoon, Callister & Hunsaker, 1994). Lying is the falsification of information. That is, when what p says in a conversation is contradictory to what p would have said if p had been honest - so resulting in the supply of false information (Turner, 1973; Burgoon et al., 1994). Concealment and exaggeration show some consistency in definition across the continuum. Concealment defines the action of ‘withholding relevant truthful information’, otherwise known as telling a ‘half-truth’ (Burgoon et al, 1994: 446; Turner, 1974: 73). In this case, p reveals less than might otherwise have been said if p had been prepared to fully disclose. A further insight into this can be established through the analysis of evasion (Galasinski, 1996). Evasion, similarly defined, can be overt or covert. Covert evasion is recognised as deceptive communication since the ‘speaker does not show s/he does not give a co-operative answer’ (Galasinski, 1996: 10). The final deceptive strategy describes ‘imply(ing) false conclusions or (to) misdirect attention away from the issue at hand’, or what may be described as suggesto falsi (Burgoon et al., 1994: 446; Sidgwick, 1992: 230).
2.2.4
Truth-telling as harmful
Interpreting truth as harmful and therefore counter to another’s best interests is reasonable only if the truth is in fact harmful. In Bok’s seminal work, she proposes that ‘the damage associated with the disclosure of sad news or risks are rarer than physicians believe’ (1973: 247). Others agree (Sheldon, 1982) and denounce the harm principle as a rationale for not telling the truth as probably false and premised on a mere shred of evidence (Moutsopoulus, 1984); grossly overestimated (Lavit, 1988); ‘just speculation’ (Hebert, 1994: 2108) and hypothetical (Wright et al., 2002). Additionally, any claim that a patient cannot cope with the truth is for some an ‘insult’ to that person (Morris & Columbia, 1982: 2659) and is inconsistent with research that demonstrates that most patients want to be told the truth and most patients do not believe that they will be harmed with truthful discussions about their health (Moutsopoulos, 1984). 2.2.5
Communication: Truth-telling and deception
It is a commonsense claim that communication follows conventions (Mitchell, 1996). Within this convention is the assumption of truth-telling – discourse underpinned by veracity (Goffman, 1959; Galasinski, 1996; Kant 1992). However, the work by Tuckett (1998a), Turner and colleagues (1974) above and other studies discussed later in this section reveal, amongst other things, that individuals make judgements that honesty is not necessarily the best policy for meeting desired ends. Consequently, some dishonesty may assist in achieving a preferred outcome. People ‘can use deceptive communication for instrumental purposes to achieve some determinable end goal’ (Burgoon, Callister & Hunsaker, 1994: 446). Whilst a clearer understanding of the types of deceptive practices is useful it remains necessary to analyse the conditions for deception to occur if p is to be labelled deceptive. A practitioner may unwittingly make a false utterance, believing it to be true, though this would be a mistake rather than a lie. At least one condition for a deception is that p knows the truth. The outcome of this mistake in the guise of a false utterance is that the listener is deceived. However, unwittingly making a mistake means that the listener is unwittingly deceived. A condition for deceptive communication is that a ‘communicator consciously intends (itallics added) to create in a target person a belief the sender believes is false’ (Burgoon et al., 1994: 445; Nalette, 1994). Likewise, speaking truthfully communicates with the intention to convey what is understood. Anything less amounts to a lie, deception or mistake.
2.3
Reasons For and Against Truth- telling
Table 2.1 below displays the core reasons for and against truth-telling. These reasons are reviewed. Table 2.1: Reasons for and against truth-telling
Reasons for truth-telling (disclosure) • • • • 2.3.1
Autonomy Physical benefit Psychological benefit Intrinsic good
Reasons against truth-telling (nondisclosure) • Autonomy • Physical benefit • Psychological benefit • Uncertainty principle
Reasons for Truth-telling: Autonomy
Autonomy is an ethical principle widely recognised as meaning self determination of and self governance over one’s actions (Johnstone, 1995; Ells, 2001). In order to determine a course of action and govern care for one’s self, a patient requires nothing less than truthful disclosure. Anything other than truthfulness diminishes the patient’s ability to be autonomous (Williamson & Livingston, 1992; Downs, 1999; Miettinen, Alaviuhkola & Pietita, 2001) and fails to show respect for persons (Erlen, 1995; Schoene-Serfert & Childress, 1986). Telling rather than withholding information allows the patient to plan care, seek another opinion and put personal and financial affairs into order (Reeder 1988; Erde, Nadal, Scholl, 1988; Drickamer & Lachs, 1992; Mueller, 2002). Furthermore, truthtelling maintains the competent resident’s status as an adult (Parathian & Taylor, 1993) and promotes a health care context (and society) as one of equality and freedom (Moutsopoulus, 1984). Numerous studies of a variety of groups show that patients mostly desire truthful disclosure including the bad news of failed treatment or death (Dunsmore & Quine, 1995; Gillan, Webber & Riley, 2000). For discussion about these studies see forthcoming section: Practitioners’ opinions, clinical situations and truth-telling. 2.3.2
Physical benefit
Truthfully informed, patients who trust those responsible for their care co-operate with and seek treatment(s) (Moutsopoulus, 1984; Lavit, 1988; Veatch & Tai, 1980; Drickamer & Lachs, 1992). Trust generated by truth-telling achieves compliance with treatments that ultimately decrease morbidity (Hebert, 1994; Tuckett et al., 1985).
Truth-telling about the patient’s diagnosis and prognosis supports tolerance of treatments, tolerance of pain (Lavit, 1988) and generally better outcomes (Zakotnik, 1997; Smith & Swisher, 1998). In the absence of disclosure about elements of a patient’s health, harm may be consequent on not seeking treatment (Hebert, 1994). 2.3.3
Psychological benefit
Deceptive practices risk being discovered and mistrust results, as patients eventually conclude that they are not being told the truth about their diagnosis or prognosis (Sprigler, 1996; Mueller, 2002). Consequently, resident-carer or resident-relative relations become strained (Field, 1992). The patient becomes suspicious (Glaser & Strauss, 1965; Field & Copp, 1999) and this may result in them becoming ‘socially isolated’ (Sprigler, 1996: 53; Lavit, 1988) with a sense of ‘abandonment’ (Dunbar, 1990: 87) as they are unable to seek counsel with anyone. Furthermore, fear (Brewin, 1977; Lavit, 1988; Parathian & Taylor, 1993) and anxiety (Anon., 1980; Veatch & Tai, 1980; Lavit, 1988;Derdiarian, 1987; Field & Copp, 1999) are reduced, coping is increased (Gotcher, 1992; Parathian & Taylor, 1993; Butow, Dunn & Tattersall, 1995) and pain tolerated (Lavit, 1988) through disclosure (Brewin, 1977; Derdiarian, 1987). Finally, knowing one’s prognosis and diagnosis is far less debilitating than worrying about the unknown (Reynolds, Sanson-Fisher, Poole, Harker & Byrne, 1981; Erlen, 1995; Parathian & Taylor, 1993). Harm may be consequent on the accidental and unplanned discovery of a previously undisclosed truth (Veatch & Tai, 1980) since lying can cause harm to those deceived (Green, Farber & Ubel, 2000).
2.3.4
Intrinsic good
Others conclude that truth-telling within the patient-carer/resident-care provider relationship is not unlike truth-telling in social life – that is, an obligation, a duty (Andrews, 1996; Gold et al., 1995; Kant, 1992)). As such, truth-telling has an intrinsic worth and is neither contextual nor founded on the nature of relationships. Irrespective of the consequences, individuals are bound to reveal the truth. This view involves seriously respecting a person as an end in him/herself and not as a means to an end (Tuckett, 1998b). The basis of this argument is that forms of deception fail to respect another as a self determining, self governing being. A deceptive carer controls the thinking of the patient (Erlen, 1995). As such, the patient is limited in acting and pursuing ends in a way freely chosen (O’Neill, 1994). Consequently, truthtelling must appear in all resident-care provider interactions. For some, this duty or obligation to truth-telling is greater than any speculation about harms that telling may generate (Andrews, 1996). This sense of truth-telling being expected in all interactions - as a universal law (Kant, 1989) accords with the previously cited view that communication follows conventions. Communicative conventions dictate that truth-telling is a universally expected rule, an ‘implicit promise’ within the nurse-patient interaction (Erlen, 1995: 64). Hence, there is an expectation for truth-telling – asked for or not (Fletcher, 1954). 2.4
Reasons against Truth-telling: Autonomy
When a resident or patient explicitly requests not to be told, truth-telling can be forfeited (Moutsopoulos, 1984; Hebert, 1994). This authorisation by the patient is stressed by some, as the most important determinant when determining an allegiance to truth-telling (Higgs, 1990; Joy, 1990). Additionally, a person forfeits their autonomy – that is, the capacity for self-determination and self-governance, when mentally incompetent. Consequently, some writers propose this incompetence or diminished cognition as justifiable for withholding information and non-disclosure (Drickamer & Lachs, 1992). In the context of dementia care, some would caution that this justification fails since ‘the assumption that the person with dementia just does not understand any longer and cannot express an opinion of their own’ or ‘has lost all short-term memory’ is ‘downright wrong’ (Hamilton-Smith & Cluning, 2001: 278; Friss Feinberg & Whitlatch, 2001). Moreover, adding to this caution, others conclude that in nursing home culture ‘the erosion of resident autonomy remains ingrained.’ in ways unrelated to cognitive capacity (Shawler, Rowles & High, 2001).
2.4.1
Physical benefit
Social or personal utility has been described as support for less than truthful disclosure (Kaminer, 2002). Utility, in this sense, refers to the maximisation of happiness and interests of all concerned (Mill, 1989; Singer, 1993). Social utility, as the reason for deception, exists in teaching hospitals where ‘material information..is concealed’ (Williams & Frost, 1992: 218). For example, patients are not told that novice doctors are performing treatments nor are they informed of risks associated with treatments performed by novice practitioners. A greater happiness (as physical benefit from treatments) is achieved for a larger number of future patients when a novice doctor practices a procedure. To disclose would potentially discourage patient participation and reduce learning which impacts on future practice and treatment outcomes (Williams & Frost, 1992). Nurses have been reported to use deception in the case of the asthmatic child (Tuckett, 1998a) and anxious patient (Gold et al., 1995) to achieve a therapeutic goal with medication. In both cases, the presence or the true nature of the medication was denied because truthful disclosure would cause the patient to refuse to take the drug – an action that would fail to maximise the patients (best) interests in terms of treatment outcomes. Alternatively, consistent with maximising treatment outcomes, the telling of the truth may be denied in the acute, emergency medical situations (Hebert, 1994) and because it will cause pain (Reeder, 1988) or a response causing death (Moutsopoulus, 1984). 2.4.2
Psychological benefit: Preventing harm to others
In telling the truth, intention is important (Bok, 1973; Higgs, 1998). Therefore discussion of ‘bad news’ is avoided since it contravenes duties of benevolence and non-maleficence (Sidgwick, 1966). For discussion about these action guiding principles see section: Autonomy, therapeutic privilege and paternalism. These two action-guiding principles direct another to be deceptive on the grounds that truth disclosure to a patient will cause distress (Sprigler, 1996; Rosner, Berger, Kark, Potash et al., 2000), anguish and depression (Andrews, 1996; Downs, 1999), pain (Reeder, 1988), anger (Brewin, 1977) and diminish hope (Holmes, 1883 cited in Reiser, 1980; Flaming, 2000; Vegni, Zannini, Visioli & Moja, 2001). Others propose that deception can or has been used to preserve and protect lives and save another’s feelings (Verhey, 1999; Pfiffener, 1999; Smiley, 2000). That is, because of these
consequences deception is chosen to avoid harm and promote well being (Ross, 1930; Percival, 1849 cited in Reiser, 1980). Therefore ‘patients do not want to hear bad news’ (Sprigler, 1996: 53; Reeder, 1988). The patient-doctor relationship perceived as ‘legalistic, commercial and contractual rather than something divine or artistic’ demands a different sort of truth (Lantos, 1996: 91). The relationship, recognised as contractual, authorises the doctor to minimise harm to the patient and to the family by whatever means the doctor deems necessary (Vandeveer, 1992). Consequently, the ‘paternalistic lie’ (Anon., 1995b: 16), withholding information under the guise of therapeutic privilege (Hebert, 1994; Drickamer & Lachs, 1992) or even using ‘benevolent deception’ (Marzanski, Jainer & Avery, 2002: 104) is justifiable. 2.4.3
Psychological benefit: Preventing harm to self
Field (1984: 64) reveals amongst nurses in a cancer ward the preference for closed awareness (Glaser & Strauss, 1965) in order to ‘maintain (an) emotional distance from the dying patient’. That is, those nurses who reported the need for the distance as a means of self-preservation preferred that only the doctor knew that the patient was dying. Others suggest that lies, deceptions and silences prevail when a family is protecting itself from the fear of death (Candib, Quill & Stein, 2002), when a doctor is avoiding legal action (Rosner et al., 2000) or his/her emotional reaction (Vegni et al., 2001) and when care providers do not want to admit failure in care (Flaming, 2000). Nurses may utilise deception to calm agitated and wandering patients. In this way, ward work is kept orderly and nurses save time and energy. Additionally, some nurses in Tuckett’s study (1998a) admitted to denial or falsehoods to cover up mistakes and to not disclosing information to the patient in wards where the social order (hierarchy) dictated.
2.4.4
Uncertainty principle
The uncertainty of a diagnosis or prognosis is offered as reason for not revealing the truth (Reeder, 1988).This principle suggests that there is no certainty in health care, therefore no ‘absolute truth’ to reveal (Knapp & Earnest, 2000). ‘Truth’ telling can never be achieved (Moutsopoulos, 1984; Lavit, 1988; Henderson, 1935). This argument takes a particular view of ‘truth’ that recognises it as an absolute or certain knowledge or meaning. Drickamer & Lachs (1992: 949) concede that the absolute truth is ‘rarely achieved in medicine’ and therefore what is required is ‘open, honest presentation of information as it is perceived (itallics added) and known’. Nachman makes the point that one must be careful to distinguish the notion of ‘ ‘truth’ as ‘the way things really are (so called objective truth) from that of ‘truth’ as ‘the way a person believes things to be’ ‘ (1984: 536). Equally, within the context of the therapeutic relationship of psychoanalysis the claim is made that ‘truth..is a matter of definition and varies according to the framework in which it is established...’ (Salzman, 1973: 1280). However, Higgs cautions that care needs to be taken that the epistemological sense of truth ‘an abstract concept, of which we shall always have an imperfect grasp’ is not confused with telling the truth ‘where intention is all important’ (1998: 37). 2.5
Practitioners’ Opinions, Clinical Situations and Truth-telling
Being honest and having truthful disclosure, particularly about diagnosis and prognosis, has been an issue in Australian hospitals amongst administrators, nurses and doctors (McNeill, Walters & Webster 1994). General practitioners have in the past noted that truth-telling and information disclosure is a commonly encountered ethical problem (Brody & Tomlinson, 1988). Nurses in critical care (Miya, Boardman, Harr & Keene, 1991; Corley, 1995; Jones & Fitzgerald, 1998), cancer and palliative care (Kuuppelomaki & Lauri, 1998; McGrath, Yates, Clinton & Hart, 1999; Taylor, Ferrell, Grant & Cheyney, 1993); mental health (Forchuk, 1991) and in general nursing practice (Tuckett, 1998a; Gold, Chambers & Dvorak, 1995; Gillan, 1994) recognise truth-telling as a common ethical issue. Other clinical situations involving the use or misuse of truth-telling include placebo therapy (Elander, 1991) disclosure of human immunodeficiency virus (HIV) (Lyter, Valdiserri, Kingsley, Amoroso & Rinaldo, 1987; Perry, Ryan, Fogel, Fishman & Jacobsberg, 1990) and, informed consent (Downie, 1985).
Studies have canvassed the opinions of doctors (Fitts & Ravdin, 1953; Rea, Greenspoon & Spilka, 1975; Thomsen, Wulff, Martin & Singer, 1993; Ruhnke, Wilson, Akamatsu, Kinoue et al., 2000) and the practices of nurses (McIntosh, 1977; Teasdale & Kent, 1994; Tuckett, 1998a) about truth-telling. A few studies have sampled the older patient’s preferences and desires for truthful disclosure (Cassileth, Zupkis, Sutton-Smith & March, 1980; Blackhall, Murphy, Frank, Michel & Azen, 1995; Drickamer & Lachs, 1992). 2.5.1
Truth-telling and the older patient
Cassileth et al.(1980:833) concluded older people sought less detailed information, preferred less involvement in treatment decisions and ‘wanted minimal or only good information’. These researchers concluded that doctors need to recognise that not every patient wants to know all that there is, nor wants to be actively involved in decision making (Leydon, Boulton, Moynihan, Jones et al., 2000). Others, in the area of psychiatric health, have concluded the rights of those who do not wish to know of their diagnosis should be respected – to take into consideration a person’s preferences (Marzanski, 2002). A large UK survey of some 2331 participants uncovered some 13.2% who were 70years and older who preferred to leave the disclosure decision of a cancer diagnosis to the doctor but still wanted certain specific details (Jenkins, Fallowfield & Saul, 2001). In a seminal survey of 224 general medical outpatients, the overwhelming majority of respondents wanted to be told a diagnosis of Alzheimer’s disease (Erde, Nadal & Scholl, 1988). A later study surveyed some 156 community dwelling, older persons’ attitudes toward being told of a diagnosis of Alzheimer disease and cancer (Holroyd, Snustad, & Chalifoux, 1996). Findings revealed that a majority wanted to be told about both diseases. This was consistent with the elderly respondents in Meredith et al.’s (1996) study, and amongst a survey of 270 sixty-five to ninety-four year olds, in which 80% indicated that they would like to be told about their health (Ajaj, Singh & Abdulla, 2001). However, just over one third of aged persons in Holroyd’s group would not want their spouse to be told if their suffering Alzheimer disease. The researcher concluded that this revealed a common attitude - family members ask that a diagnosis or information not be revealed to loved ones (Anderson, 1996; Anonymous, 1995a). Other researchers have found that amongst nurses in cancer and geriatric settings 20%
and 56%, of their participants respectively, would withhold information as requested by the patient’s family (Maestri-Banks & Gosney, 1997). Research involving a mixed ethnic group of ‘senior citizens’ 65 years and over, revealed that Korean-American and Mexican-American elderly were less likely than European-American and African-American to believe that the patient should be told the truth about diagnosis and prognosis of a serious illness (Blackhall et al, 1995). The researchers concluded that ethnicity rather than any other demographic variable was responsible for the outcome. For a discussion about cultural influence and truthtelling, see section: Truth-telling and doctors’ perspective. 2.5.2
Truth-telling and patients’ perspectives
As early as the 1950’s, patients’ views were sought regarding their attitude to truthtelling about a cancer diagnosis. The work of Kelly & Friesen (1950), Bowen (1955) and Aitken-Swan & Easson (1959) concluded that patients preferred and were glad to receive the truth about a cancer diagnosis. Cassileth et al. (1980) agreed, but added that religion (Schindler, 1982) and culture can have an influence on determining a person’s attitude towards information. Later studies by Reynolds and others (1981) and Tattersall and colleagues (1994) both in Australia, Blanchard and colleagues (1988) in the United States, Sutherland’s team (1989) in Canada and Meredith’s group (1996) in the United Kingdom reported a similar requirement - that patients with cancer would like to hear about the nature of their terminal illness. These findings have been confirmed amongst adolescents with cancer (Dunsmore & Quine, 1995) and patients’ with multiple sclerosis (Elian & Dean, 1985). Additionally, parents demand immediate disclosure about a child born with a cleft lip. Rather than a doctor withholding full disclosure for some time, parental expectation is that ‘the doctor should be blunt, honest, sympathetic, very polite and answer all the questions as honestly as possible’ (parent quoted in Strauss, Sharp, Lorch & Kachalia, 1995: 86). Greenberg and colleagues (1984) discovered that parents likewise demand open disclosure about the diagnosis and prognosis of childhood leukaemia. An Australian study has concluded that most patients want all available information – finding that in the sample, 27% of patients were told about their prognosis whilst 57% wanted to discuss it (Butow et al., 1996). Most patients want to be told of a diagnosis and its consequences (Cassileth et al., 1980; Marzanski, 2000; Blinov & Hanson,
1997;
Jenkins
et
al.,
2001).
Therefore,
generally
speaking,
‘failure
to
disclose…information on the grounds that significant numbers of patients prefer not to know is untenable’ (Jenkins et al., 2001: 48). Additionally, patients rejected unconditionally their family influencing what information they would be given. That is, patients reject any family request for telling less than the truth (Benson & Britten, 1996). 2.5.3
Truth-telling and doctors’ perspectives
In medical writing, from Percival (1803, in Reiser, 1980) to Flint (1898), Cabot and Dicks (1936) and Sperry (1950), the practice of honest disclosure has fluctuated. In Fitts & Ravdin’s (1953) survey of 444 doctors, asking if they would disclose a diagnosis of cancer, more than half said they usually would not, 12% said they would never disclose, and 3% said they would always tell. When asked a similar question, a total of 10% of the 219 doctors surveyed by Oken said they would reveal a diagnosis of cancer (Oken, 1961). More than a decade later, in a sample of 151 doctors – 39% were reluctant to disclose a diagnosis, 22% refused to discuss the terminal nature of an illness with a seemingly healthy patient, 54% were prepared to leave the disclosure option to the family, 37% would honour the family’s request and 9% would override the family based on the patient’s request (Rea, Greenspoon, Spilka, 1975). Twenty years after Oken’s study, a shift was noted in the doctor’s attitude toward telling the cancer patient’s diagnosis – 98% of doctors preferred to tell the patient (Novack, Plumer, Smith, Orchitill, Morrow & Bennett, 1979). Recent research into the doctor’s views about truth-telling suggest some variability associated with culture. In an Italian study, nearly half of the patients reported being told their diagnosis whilst one quarter of the physicians reported not giving accurate information (Masconi, Meyerowitz, Liberati, & Liberati 1991). Similarly, Thomsen, Wulff, Martin & Singer (1993) revealed southern European gastroenterologists reported they would usually conceal a diagnosis even when a patient asked to be told the truth – but they would tell the spouse the full truth. Their northern contemporaries would usually reveal diagnosis to both the patient and patient’s spouse but some would inform only the spouse with the patients permission and sometimes ‘embellish the truth’ if metastasises were present (Thomsen et al., 1993: 473). A Belgian study in a pulmonary cancer ward concluded that medical staff had difficulty knowing how much disclosure to make. Consequently doctors had a
tendency to be ‘conservative when disclosing’, failing to meet the patients’ information needs (DeValck & van de Woestijne, 1996: 133). In Japan, 30% of psychiatrists would inform a patient of a diagnosis of schizophrenia (McDonald-Scott, Machizawa & Satoh, 1992); most cancer patients are not told (Noritoshi, 1994); there is a ‘norm of non-disclosure’ particularly amongst the terminally ill elderly (Davis & Konishi, 2000: 90); a poor prognosis is given an optimistic spin for the patient but a negative spin for the family (Akabayashi, Kai, Takemura & Okazaki, 1999) and one writer has uncovered a small but clear trend toward diagnostic disclosure (Mitsuya, 1997). In China, silence surrounds terminal illness, and diagnostic disclosure is the family’s responsibility (Woo, 1999). However, some Chinese nurses and doctors believe that the patient should never be told (Ross, Dunning & Edwards, 2001). Whilst the majority of doctors preferred diagnostic disclosure in Poland, in actual practice such truth-telling in hospitals is rare (Meyza, 1997). Levy (1997) stresses the importance of understanding cultural aspects about illness and disclosure – confirmed by the practices in Iran where the family is informed of a diagnosis (cancer) and the patient is not (Ghavamzadeh & Bahar, 1997). Across three nations– United States, Canada and Britain, 55%, 49% and 45%, respectively, of those doctors surveyed would reveal the possibility of multiple sclerosis to patients (Brown in Reich, 1995). Others have reported a greater propensity amongst doctors to always or usually always tell the patient this diagnosis (Scheinberg, Kalb, LaRocca & Kendall in Anononymous, 1983) 2.5.4
Truth-telling and the nurses’ perspective
Nurses and doctors have been reported to use deception by omission, vague or euphemistic responses and concealment. Doctors avoid the direct lie but resorted to ‘semi-truths’ (McIntosh, 1977: 75). Based on the perception ‘it is (not) up to a nurse to tell the patient the diagnosis’ (Sherblom, Shipps, & Sherblom, 1993: 459) nurses practiced deception (McIntosh, 1977). In a later study a ‘standardized evasion of the truth’ was employed. Whilst ‘few nurses lie(d) to patients’, they utilised half-truths and denial to deliberately deceive (Schrock, 1980: 146, 141). Nurses rationalised their actions on the grounds of the greater good for their patients (Tuckett, 1998a, 1998b), and a majority of nurses resorted to concealment and denial due to institutional policy or because of a doctor’s
order (Glaser & Strauss, 1965; Bond, 1983; Lyall, 1990; Miya, Boardman, Harr & Keene, 1991; Field, 1992; Tuckett, 1998a). Lyall (1990: 16) reports on a British survey amongst cancer carers in which some doctors expect nurses to ‘evade direct questions and refer the patient to the doctor...(or) lie to patients if put on the spot’ even though nurses claimed a desire for truthfulness. That is, nurses resort to ‘nondisclosure or euphemisms to maintain ward social order’ (Bond, 1983: 72; Tuckett, 1998a). Not all doctors expect nurses to evade a direct question, nor refer the patient on to them. Fifty percent of 92 nurses when asked whether they would deal with a direct question about a patient’s dying said they would answer the question (Seale, 1991). Overall, the nurses and doctors in the same study ‘suggested a general preference for openness’ tempered by the consideration that bad news ought to be broken slowly and not all patients demand to know ‘(Seale, 1991: 943). Coronary care nurses similarly preferred open awareness (Glaser & Strauss, 1965) but communicated ambiguously about terminal prognosis (Field, 1992). Nurse practitioners tempered their disclosure, on a case-by-case basis, deciding about the content, the when, the how and by whom. However, what nurses preferred was not necessarily indicative in straightforward or unambiguous telling. Student nurses ‘(fob) patients off’ as they are socialised to perpetuate the doctor’s story given to the patient. Student nurses were requested not to tell patients about their condition, were kept uninformed by doctors and the senior clinical nurse with the consequence that speaking the truth was restricted or eliminated (Melia, 1987: 88). An exploratory study of registered nurses sought to discover their attitude toward terminal illness (cancer) in the hospital setting and particularly the Geriatric Unit (Maestri-Banks & Gosney, 1997). A little less than half of the nurses on one unit and some 69% on the other unit said they would not tell an 80year old patient she had metastatic lung cancer. Additionally, nearly one fifth of the nurses on one unit and a 56% on the other unit said they ‘…would withhold information on the instructions of a close family member...’ (Maestri-Banks & Gosney, 1997: 346, 347; Tuckett, 1998a). Wilkinson’s (1991) communication study amongst cancer patients and nurses observed how a division of disclosure was overcome when the registered nurse negotiated permission from the doctors for any qualified member of staff to discuss a
patient’s diagnosis and prognosis if requested to do so by the patient. This created an environment of openness where nurses were not frightened to talk truthfully with the patients for fear of getting into trouble (1991: 687) The tendency to disclose may be related to the care institution (Field, 1992). A comparison of moods and opinions of patients across four cancer care settings revealed that in the hospice environment patients were less depressed and anxious (Hinton, 1979). Feelings of higher mood and less anxiety were attributed to open communication in which patients could readily discuss their condition, possible outcomes and dying. Social workers interviewed in the hospice reported patients were ‘always’ or ‘almost always’ told their terminal illness status. Nurse-patient discussion about terminal illness was significantly more encouraged within the hospice than the ‘skilled nursing facility’ and the hospital (Parry, 1988: 38). Qualitatively, it seems that honest, truthful disclosure causes a ‘tension’ amongst nurses (McGrath, Yates, Clinton & Hart, 1999: 28). Quantitatively, the use of deception (in nursing) has been described as rare (Teasdale & Kent, 1995). 2.6
Relationship: Family Relationships, Parentalism and Health Effects
Social science research suggests that resident’s family and friends do maintain contact with the resident both outside and inside the nursing home (Nussbaum, 1993; Port, Gruber-Baldini, Burton, Baumgarten et al., 2001). The degree of responsibility for the resident by the family is most intense at the time of admission and for the first year and intensifies again after three years when the family recognise that the admission into care is permanent (Schwartz & Vogel, 1990; Nussbaum, 1993). Whilst this suggests the maintenance of an interpersonal relationship, health care decision making by the family on behalf of the resident is not reported to necessarily be appropriate. Zweibel & Cassel’s (1989) study into decision making choices by older patients compared to decisions made by a proxy, concluded that the families’ decisions represent what they would choose for themselves and not what the older person would choose nor what they thought the older person would choose. Practitioners recommend that ‘families, who should know their members far better than doctors can, have regularly been wrong’ in judgements about health care wishes and desires (Radovsky, 1985: 588). Additionally, where families seek nondisclosure from care providers for their older and competent relatives, there is ‘no
legal or moral warrant’ for any such course of action (Schoene-Seifert & Childress, 1986: 87). Interpersonal research with a family care giving focus proposes parents and children (Cicirelli, 1992) and couples (Sillars & Kalbfleisch, 1989) rely on implicit decision making. The researchers suggest that ‘individuals in long-standing relationships tend to build implicit decision making processes frequently leading to a false sense of knowledge about another’s desires and wishes’ (Pecchioni & Nussbaum, 2000: 318). Usually, these well meaning assumptions about the decisions an agent might make operate under the rubric of paternalism-parentalism (parent-child interactions). Reed (1996) concedes that the prototypical paternalistic relationship is that which occurs between a parent and child. It is within this type of relationship that lying takes place – usually the parent lies to the child for benevolent reasons. Caring relationships similarly underpinned by benevolent paternalism-parentalism, avoid the truth in an effort to protect another from the painful facts about their health or care circumstances. Additionally, the stereotypical image of the elderly as ‘frail and vulnerable’ has been used to ‘infantalise (reduce to child-like status) and patronize’ the older person and as well, prevent them from making their own life choices (parenthesis added, Herring & Thom, 1997: 234). The labelling of an older patient (aged care resident) as a care provider’s child ‘disenfranchises the (resident) from their original status and identity’ (parenthesis added, Wood & Kroger, 1993: 265). Similarly, protecting the older person from risk may deny them their dignity and capacity for self determination (autonomy) (Herring & Thom, 1997; CDHA, 2002c, May; Collopy 1995 cited in Hasselkus, 1997). In contrast, Johnstone proposes that the well-being of older people is put at risk with the ‘misplaced emphasis..on autonomy and the older person’s ‘right to decide’’ about their health. Older people have a diminished capacity to decide and to advocate for their own best interests (Johnstone, 2002: 216). Parentalism – benevolent decision making by an adult child for an elder parent or in loco parentis, by a care provider for an aged patient risks reducing the elder person to child status (Radovzky, 1985). Apart from the specific effects this has as described above, writers contend that ‘limiting autonomy leads to potentially negative health consequences’ as a result of the loss of control over one’s own life (Pecchioni & Nussbaum, 2000: 317). The ability and opportunity to exercise autonomy is important
for physical health (Moutsopoulos, 1984) and psychological health for all persons (Hummert & Morgan, 2001). Consequently, the importance of control for older individuals facing a decline in these, may be heightened (Carpenter, Van Haitsma, Ruckdeschel & Lawton, 2000). Colleagues concur and add that negative physical, social and psychological outcomes include poorer health, diminished morale and self-esteem (Pecchioni & Nussbaum, 2000). 2.6.1
Autonomy, therapeutic privilege and paternalism
Autonomy, from its Greek origins, means self-rule or self governance (auto = self, nomos, = rule or governance). Hence, a widely held view in ethical discourse is that autonomy means self-determination of, and self-governance over, action (Johnstone, 1994; Downie & Calman, 1994; Ells, 2001). A person is self-determining by choosing for themselves as well as by formulating and carrying out their life plan. (Downie & Calman, 1994). The decision to implement a course of action that is in the best interests of the person, highlights the autonomous agent’s capacity for ‘intentional action’ (Beauchamp & Childress, 1994: 121). Furthermore, the autonomous person is said to be self governing through the exercise of rational decision making. Hence, rational deliberation is an essential feature of the autonomous individual (Mitchell & Lovat, 1991). Meshed into the selfdetermining and self-governing components of autonomy is a further element – to act freely (Mitchell & Lovat, 1991). A person can only be acting freely and autonomously when acting independently from controlling influences (Beauchamp & Childress, 1994). Controlling influences can include incomplete information or impaired comprehension. Importantly, a respect for autonomy recognises a limitation. Agents can act according to their own best interests provided that in so doing they do not restrict another’s exercise of autonomy (Johnstone, 1994). Some writers have proposed that situations may exist in which a temporary disrespect for autonomy enhances overall future autonomous action (O’Neil, 1984; Strasser, 1988). This may mean that a nurse may fail to disclose something based on her or his judgement about the patient’s response – a response that may diminish autonomy in future acts. This judgement, in the guise of furthering overall autonomous choices, is consistent with the common law principle of ‘therapeutic privilege’. Therapeutic privilege allows at least the doctor to withhold information based on her or his assessment about the impact such information will have on the patient’s emotional well-being (Staunton & Whyburn, 1997; Kerridge, Lovat &
McPhee, 1998; Tuckett, 2000). When the law recognises therapeutic privilege, it follows that the patient does not always have a legal right to full disclosure about diagnosis (Gent, 1997; Marzanski, Jainer & Avery, 2002). Furthermore, absolute or perfect autonomy may be unrealistic. Since in most daily situations some controlling influences exist and reasoned choices are rarely founded on complete information and therefore complete understanding, then ‘autonomy occurs by degree’ (Beauchamp & Childress, 1994: 123). Limits and constraints are placed on autonomy within daily social life (Mitchell & Lovat, 1996). In a given situation the prima facie obligation to respect autonomy can be overridden by other competing obligations. For Johnstone (1994:92) the ‘white lie’ is not morally permissible since it restricts another realising his or her own best interests. Carers in dementia day care report resorting to ‘white lies’ to maintain the patient’s safety (Hasselkus, 1997). Others, like Gillon (1995) respect an individual’s autonomy but recognise deception as permissible if agreed upon by that individual. In support of this, Veatch & Tai (1980: 45) concede that ‘it is hard to see an ethic of autonomy could lead to forcing information on a patient’ who otherwise declares she or he does not want to be informed. Tuckett (1998b, 1998c) has proposed that deception might be a fitting response, even a compassionate one, ‘in balance by the principle of beneficence’ even though a deception fails to respect autonomy (Beauchamp & Childress, 1994: 126). In response, Reich would argue that a ‘caring response inclines care-givers to respect the patient as an autonomous agent’ (1995: 36) and that this obligation takes as important ‘telling the patient the truth about his (sic) condition’ (Hauerwas, 1978: 149). Paternalism stands in contrast to autonomy since the former is the belief ‘a person can impose a decision on another for the welfare of that individual’ which implies, by definition, that paternalism is not necessarily an ‘uncaring, selfish or exploitive attitude’ (Pecchioni & Nussbaum, 2002: 321). Writing about paternalism in the family care context, Cicirelli (1992) concurs that paternalism includes a concern for the welfare or happiness of the elder parent by the child. The child, as the carer, believes that she/he knows what is best to maximise utility (benefits over harms). Paternalism with a focus on the well being of the parent suggests that the child as carer is firstly, more competent than the parent, and secondly in the family care context, that paternalism operates to a greater extent than autonomy (Hummert & Morgan, 2001). A study of mother-daughter dyads concluded in the results that paternalism and
autonomy
are
embedded
within
long-term
family
communicative
practices
(Pecchioni, 1999 cited in Hummert & Morgan, 2001). Therefore, care providers who act according to paternalism act in the belief that they ‘know what is in the best interests of the patient’, or resident or elder parent in care (Tuckett, Boulton, Olson & Williams, 1985; Forrest, 1989: 819). However, it may be the case that nurses, healthcare workers generally and others cannot know what is in the patient’s or resident’s or another’s best interests. Melia (1994) proposes that nurses rather than other health care professionals are more constantly with the patient and therefore have some insight into what life is like from the vantage point of the patient in care. However, she does underscore that ‘this vantage point should not be overstated: only the patient knows the patient’s views’ (italics added, Melia, 1994: 10). Furthermore, nurses who claim to be the patient’s advocate are acting out of benevolent paternalism (Mullins, Moody, Colquitt, Mattiasson & Anderson, 1998; Gent, 1997). The role as advocate requires an objective view - an abstraction from the context. However, the health care context and system is endowed with ideologies particular to it and the nursing profession. This degree of abstraction is not possible for nurses since they ‘cannot claim to be neutral players in the game’ but rather ‘by virtue of their knowledge and familiarity with the system’ have power that the patients cannot have (Melia, 1994: 9). Doctors assuming insights into another’s best interests are similarly warned (Fallowfield, 1997; Bezwoda, Colvin & Lehoka, 1997). Hebert (1994: 2107) cautions that doctors ‘cannot substitute their judgements about what is important for patients to know for the patients’ own judgement’ but rather the doctor needs to ‘specifically ask them…and ensure that these informational needs are met’ (italics added). The ‘worst sort of paternalism’ is this very reality – the doctor believing that they know better than the patient and therefore ‘to give only that amount of information they think appropriate and thus influence patient decision making’ (Webb, 1998: 5). Additionally, in a study on older patient – health care provider relationships, ‘neither participant can assume that he or she knows what is best or can read the other’s mind’ (Nussbaum, Pecchioni, & Crowell, 2001: 35). Other persons, who act according to a belief that they know another’s best interests, are fantasising. Lavit (1988: 116) has argued that this wearing the ‘shoes of others’ is
an exercise in ‘guess(ing) and fantasis(isng) what other people think and feel’. Rather than serving another’s best interests and welfare, they inflict harm by acting upon such fantasy and self-projection. As with Herbert’s recommendation above, one ‘ought to investigate the actual mental or emotional state of the person’ (Lavit, 1988: 116). Writers contend that patients’ interests cannot be served unless an effort is made to determine whether the patient, resident or other party has priorities (Tuckett, Boulton, Olson & Williams, 1985; CDHA, 2002c, May). In a qualitative study into the patients’ well-being, participants suggested that it was through listening and talking that nurses come to know and understand the patient’s perspective (Wallace & Appleton, 1995). Telling another the truth is essential for establishing and maintaining trust and, for some, the basic premise of the therapeutic relationship (Pask, 1994; Salzman, 1973). Participants in one study concurred that ‘trust is built largely on communication’ (Lupton, 1996: 159). Communicating less than truthful information will directly influence trust – essential for the helping relationship (Gold, Chambers, & McQuaid-Dvorak, 1995; Erlen, 1995). Even in a discussion about ‘an alternative mode of parentalism’ (to act in a child’s best interests) the nurse acting in this way persuades the patient through the explanation of treatment alternatives (Jecker & Self, 1991: 297; Tuckett, 2000). Others, have suggested utilising a ‘psychological registration sheet’ that notes what information is given and reactions to it to improve communication with patients (Valck & Van de Woestijne, 1996) or an ‘advanced directive’ about truth disclosure which is noted in the patient’s medical record (Schattner & Tal, 2002: 68; Buetow & Coster, 2001). 2.6.2
Determining another’s interests: Limited knowing
Numerous studies have analysed the capacity for nurses to determine the perceptions of patients only to conclude that nurses are unable to successfully make these judgements. Johnstone’s (1976) focus on a gynaecology unit determined that nurses perceive than patients have more worries that the patients report. The study concluded that ‘nurses are not very aware of patients’ worries and therefore probably are inaccurate in their assessment of the type of information patients need’ (1976: 43). A number of studies in the 1980’s determined that nurses rated the patients’ as feeling worse than patients themselves did (Mowinski & Muhlekamp, 1981; Holmes & Eburn, 1989), and staff overemphasised loss, overrated pain and undervalued
changes in simple activities of daily living as compared to the patients (Nehemkis, Gerber & Charter, 1984). Additionally, Holmes & Eburn concluded that their study ‘demonstrates significant differences between patient and nurse perceptions of the level of symptom distress, particularly with regard to pain, nausea, sleep, appetite, concentration and mood’ (1989: 844). Research has continued to show, for example, that intensive care unit nurses rated items on a forty-two item scale more stressful than the ICU patients (Cochran & Ganong, 1984); pre-operative surgical nurses are not accurate in perceiving stress in the patients they care for (Biley, 1989); nurses’ ability to elicit and identify their patient’s concern in the hospice setting amounted to a success rate of ‘less than 40%...a level which is insufficient to plan appropriate individual care’ (Heaven & Maguire, 1996: 285). Nurses on the surgical ward underestimated the patients’ needs and nurses on the medical ward overestimated the needs of patients (Lauri, Lepisto & Kappeli, 1997). Extending these types of studies from the medical setting to include the psychiatric care circumstance, all nurses overestimated the physical and emotional needs of the patients (Farrell, 1991). This latter study concluded that ‘nurses do not know their patients very well’ and more specifically ‘general nurses failed to an appreciable extent to notice that ‘talking was more helpful than medicine’ (Farrell, 1991: 1068). In a study involving twenty-five elderly patients, results indicated that the patients identified items as being less stressful than nurses. Nurses were able to identify accurately the sources of distress for the average elderly patient but they could not identify which elder patient worried about which item (Davies & Peters, 1983). Clinton, Edwards, Moyle, Weir and Eyeson-Annan (1996) in their study in dementia care reported that nurses failed to address the emotional needs of the residents and did not recognise the residents’ attempts to express their concerns. Reed and Bond (1991) determined that nurses identified good geriatric care as task orientated rather than the assessment of individual elderly patients problems and the addressal of the needs of individual patients. Concurring, Kellett cites in her data the wife of a resident who recognises that nurses do not posses knowledge of the resident’s/spouse’s ‘personal habits, likes and dislikes’ (1998: 12). In fact anxiety was expressed when family carers perceived professionals to possess little capacity to appreciate the personal needs and wants of their relative-resident (Kellet, 1998: 13). This limited knowing about the resident can be due to negative
stereotyping and the fact that care givers only know the resident as she or he is in care and are not ‘saddled with the life-long positive and negative context that characterises family relationships’ (Mezey, Miller & Linton-Nelson, 1999: 45). Pecchioni and Nussbaum (2000) report on research that associates the acceptance of the stereotype of the older person as frail and incapacitated with care giver determinations about the elder’s ability to make decisions. Whilst for some older people it may be the reality that they decline physically and become forgetful, for most it is not (Feldman, 1999; Gibson, Mathur & Racic, 1997). Even in the absence of cognitive impairment in the older person, care givers associate an increased need for physical care with a decreasing assessment of the ability of the elder to make decisions. It is the stereotype of the aged as frail and incapacitated that may ‘play a factor in assessing an elder person as less capable (of decision making) than he or she is at any given point of time’ even in long standing relationships (parentheses added, Hummert, 1994 and Robinson & Skill, 1995 cited in Pecchioni and Nussbaum, 2000: 321). 2.7
Role: Caring Role and Carer Characteristics
In the nursing literature, care is considered to be a prominent element of the nurse (care provider) – patient relationship. Nurses and nursing are identified as caring and as a caring practice, respectively (Kyle, 1995; Tuckett, 1999). Caring has been extensively analysed and broadly described within the nursing literature (Euswas & Chick, 1999). Some recognise caring as the central core for all that is nursing (Kyle, 1995), as the focus construct of contemporary nursing (Rawnsley, 1990), or as primarily a feeling of concern, of interest, of oversight with a view to protection (McFarlane, 1976). Others have concluded that caring is elusive, defying a consensus definition (Morse, Solberg, Neander, Bottorf & Johnston, 1990; Phillips, 1993). Additionally, describing the nature of caring if it is dependent upon the context in which it takes place, becomes problematic because no two caring contexts are similar (Phillips, 1993; Ray, 1989). Leininger’s influential work proposes that care is cognitively learned and culturally specific modes of helping. This suggests that care/caring in one organisational culture (residential aged care) may stand in contrast to the sense of care/caring understood and practiced elsewhere and by others (Leininger, 1981; Bevis, 1981).
Tuckett’s (1999) micro-analysis confirmed care/caring was able to be understood as ‘a way of being in the world’ (Benner & Wrubel, 1989; Heidegger, 1962) that transgresses the boundaries of rules or principle-guided action. Going beyond the boundaries of rules, critically appraising the care requirements, has been described as defining excellence in nursing care (Benner, 1984). The ‘being in the world’ as a descriptor of care/caring has been described as a human trait and part of human nature which is essential to humanity’s existence (Leininger, 1985; Roach, 1991). A commonly cited construct of care, exemplified by this understanding of human traits, is the virtue of compassion (Fry, 1988; Brody, 1988; Wolf, 1986). It may be claimed that compassion is an intensive form of benevolence and its companion, non-maleficence (May, 1994; Tuckett, 1998a). A predisposition to act according to beneficence requires a carer trait of benevolence (Euswas & Chick, 1999). The care provider with this trait, when asked, will respond that she/he acts for ‘the good of the resident, for the resident’s well-being’. Beneficence has been described as ‘concern for the well being’ (Kerridege, Lowe & McPhee, 1998) and ‘contributing to other’s welfare’ (Beauchamp & Childress, 1994: 259); as ‘active well doing’ (Mitchell & Lovat, 1991: 101) and most commonly ‘above all, do good’ (Johnstone, 1995: 93; Hall, 1996). Summarily, it seems that acting to benefit others, having a genuine concern about another’s good, describes beneficence (Wallace, 1978). Appleton’s (1993: 894) ‘art of nursing’ study makes the claim (based on findings) that the ‘nurse’s open and honest communication signals to the patient that the nurse is sincerely concerned for their well-being’ (benevolence) and ‘truth-telling ..conveys respect (autonomy) that promotes trust and comfort in the relationship’ (parenthesis added). A care provider that defines her or his practice by reference to non-maleficence is recognised as one who refrains from acting in a way that will inflict evil or harm (Beauchamp & Childress, 1994). A care provider can generally be expected to benefit others but not everyone, whilst it is generally expected that a care provider not inflict evil or harm on anyone (Tuckett, 2000). Additionally, beneficence is defined further by way of reference to utility (Beauchamp & Childress, 1994). The provision of benefit or doing good for another can be achieved by either actively providing a good or benefit, or preventing or removing a harm. Beneficence incorporates a balance of benefits over harms. According to
Beauchamp & Childress, 1994: 259), beneficence is divided into a ‘principle of positive beneficence (benefiting others) and a principle of utility (balance of benefits over drawbacks)’. Care/caring that relies on beneficence and non-maleficence assumes that care providers can make determinations about another’s best interests and act accordingly. An alternative emphasis understands care/caring as more than a benevolent, technically competent one-way care provider-interaction. Rather, the essential characteristic of care is being with the pro-active recipient of the care who is more than an object to which the care providers do things (Paterson & Zderad, 1976). 2.7.1
Caring: Informing and honesty
A number of quantitative studies have attempted to determine from amongst nurses and patients care behaviours that are perceived to be the most important. Amongst hospitals
with
psychiatric,
medical
and
surgical
wards,
nurses
ranked
expressive/affective behaviours as most important compared to patients that ranked the giving of honest and clear information and competent clinical care as most important (von Essen & Sjoden, 1991a: von Essen & Sjoden, 1993). Amongst cancer, surgical and general orthopaedic patients and staff, patients ranked ‘Is honest with patient about his medical condition’ as being significantly more important than did nursing staff who did not rank this item in their ten most important care behaviours (von Essen & Sjoden, 1991b: 275). Coronary care nurses and patients (Rosenthal, 1992), and nurse educators (Komorita, Doehring & Hirchert, 1991:26) made no reference to ‘honesty’ although in a later study amongst cancer patient-staff dyads, patients again ranked as the first two most important care behaviours (‘Is honest with patient about his medical condition’ and ‘Tells the patient in understandable language what is important to know about his or her disease and treatment’), respectively (Von Essen & Sjoden, 1994: 208-209). Related studies replicating the quantitative ranking method amongst coronary care patients, nurses and doctors (Scharf & Caley, 1993) in a rehabilitation hospital (McDermott Keane, 1987) and in oncology (Gooding, Sloan & Gagnon, 1993; Mayer, 1987) did not publish for nurses or patients the ranking of honesty or ‘Tells the patient in understandable language what is important to know about his or her disease and treatment’.
In the nursing home, findings are consistent with those described above. Residents recorded in their ten most important caring behaviours ‘Is honest with the patient’ and ‘Tells patient, in understandable language what is important to know about his or her disease and treatment’ but these were not found in the top ten for nurses. Residents ranked as the most important caring behaviour ’Puts patient first no matter what else happens’ which was not found in the top ten for nurses. Nurses ranked ‘Listens to patient’ as the most important caring behaviour which was ranked the fifth most important caring behaviour by residents (Smith & Sullivan, 1997). A qualitative study that utilised a grounded theory approach amongst cancer patients, nurses and ‘others’ asked participants to identify care behaviours that one ought to do to be cared for and one ought to be like to feel cared for. Nurses mentioned being honest, being realistic and not giving false hope significantly more that did the patients and ‘others’ – ‘honesty was more important to nurses than the other two groups’ (von Essen, Carlsson & Sjoden, 1995: 81, 84). This outcome may suggest that quantitative appraisal of most important care behaviours skews choice away from equally important care behaviours. Quantitative findings may not be able to be literally interpreted to suggest that nurses perceive honesty and information sharing as unimportant but are just less important relevant to other behaviours. This was borne out when independent nurse practitioners ascribed honesty as significant to their work but this and other values in daily practice are weighed against and contingent upon the specific circumstances that influence a particular situation (Viens, 1994). Related qualitative studies aimed at determining the patients’ perspective about care/caring have highlighted the importance given to disclosure and discussion. From the analysis of data from fifty patients, Brown (1986) identified the provision of information and promotion of patient’s autonomy as important. The former referred to communication about the patient’s physical condition and the latter described the patient’s desire to be an active participant in the treatment process. Communication has been identified as central in the care of the aged since it promotes independence for the elder resident and a positive image of the resident’s identity. Edwards, Weir, Clinton & Moyle (1993) contend that communication studies confirm a positive relationship between resident psychosocial well-being and a ‘close’ staff-resident relationship. It is this ‘interpersonal relationship aspect that is distinctive to nursing and caring’ (Webb, 1998: 6).
Rieman’s (1986) phenomenological study of ten nurse-patient interactions concluded that to not care is: not having time to talk, merely doing a job, making one feel like a child and giving simple answers as though one can’t understand. A qualitative study involving one hundred adults across sixty hospitals reported that good and safe nursing care meant discussion with, listening to and providing the patient with individualised, relevant information. Also, good nursing practice meant care providers inquire about the patients opinions and wishes and respect the patients freedom of choice and right to make decisions. A barrier to care included not asking the patient his or her opinion or wishes and detached care was defined by information that focused on the disease or illness (Kurki-Astedt & Hagman-Laitila, 1992). 2.7.2
Communicating, care encounter and control
Communication is the basis for all aspects of a relationship between people (Demin, 1999). Wilmot (1995 cited in Nussbaum et al, 2001) concurs with a relational model of human interaction. This five point model offers an overview of the nature of the older patient-health care provider relationship. Firstly, the model suggests that relationships and communication are symbiotic – each gives form and adds to the development of the other. Secondly, the older patient-health care provider relationship is subjectively experienced. Therefore, it is only through communicating, that the individual’s relational schemas that give the relationship meaning, can meld to a shared understanding (Hak, 1994). Thirdly, the relationship must be considered in context. The organisational culture and other relationships can inhibit, enhance or at least influence in some manner the relationship (Wood & Kroger, 1993). Fourthly, how the resident, nurse or doctor define themselves is a function of ‘behaviours and thoughts within the relationship’ (Downey, 2001: 130). Finally, ‘relationships are not static, linear processes’ and therefore, the relationship is ‘always more or less intimate’ and a site where the ‘power dimension is always being negotiated’. The implication of this final point is that a universal description of the relationship as special and any ‘prescriptions for communicative routines’ by a health care professional may be seriously questioned (Nussbaum, et al., 2001: 29). This relational model for human interaction resonates in a study that revealed the social organisation of a particular nurse-patient relationship. In a given care context, the relationship became defined by the task orientation to care that constrained both the relationship and communication. Knight and Field (1981) noted that the division
of labour between junior staff (patient carer) and senior staff (administrator) resulted in weak communication between staff and restricted information with the primary care provider (junior nurse). The nurses were guided by policy that restricted what information could be given to patients, in turn limiting the nurse-patient interactions and setting the care provider up in situations requiring avoidance and evasion. Furthermore, those who defined the nurse-patient relationship as one of friendship became involved in situations where they were forced to betray trust. Similarly, research has focused on the association of residents’ agitation and social networks of the nursing home resident. Cohen-Mansfield & Marx (1992) demonstrated that residents’ agitation and aggressive behaviours were significantly related to diminished intimacy with nurses and visitors and fewer telephone calls. This division of disclosure is suggested by Parathian & Taylor (1993) as the reason patients do not necessarily ask for more information (even though they would like more) and the reason why nursing staff do not invite questions from patients. That is, nurses ‘may be unable or are not allowed to answer the patients’ questions... ’ (Parathian & Taylor, 1993: 802). Kendall agrees, proposing that nurses’ ’desire to be honest’ is in tension with disclosure that ‘oversteps the mark’ risking censure from medical staff (1995: 161). Nussbaum (1990; 1991) conducted interviews with residents to determine relational needs, and interviews with nurse aids and residents to gauge what each was attempting to achieve within their interactions. In the first study (with residents), friendship and a close bond were deemed appropriate within the relationship. Residents also acknowledged that they were in a subservient position. Other studies have identified the relationship as family-like (Wilson & Daley, 1998), or adoption; as intimate in the care of long-stay dying (Field, 1984); as care givers having ‘strong attachment’ to older people in nursing homes (Mezey et al., 1999: 45); ‘real friendship’ (Bowers, Fibich & Jacobson, 2001) and the mother metaphor to describe female carers’ relationships with residents with moderate-severe dementia (Haggstrom & Norberg, 1996). In Gubrium’s ethnography, nursing home residents agree that ‘they treat me as family’ and that the nursing home is ‘family-like, but not family, not kin’, respectively (Peter Rinehart and Lula Burton residents in Gubrium, 1993: 114, 133). In Nussbaum’s second study (1991) amongst care providers and residents, residents identified the importance of physical care and also the establishing of personal
relationships whilst care providers de-emphasised an affect element. Care providers also identified efficiency and control as important. Following the relational model, control in a relationship is symbiotically related to the control of communication (information sharing). In Patterson’s (1995: 684) study, the role of the nurse in sharing information with the residents was deemed ‘less significant or minimised’ in the nursing home setting even when more information would have been preferred. As on admission into a nursing home, ‘very little talk is directed to the (resident-to-be)’, the notion of control and power is evidenced early (Nussbaum, 1993: 244). Since ‘knowledge is power’, communicative containment strategies can be viewed as ‘methods of managing the organisation and distribution of power relationships, and as strategies used by the ‘powerful’ to maintain positions of power and dominance...’ (Reed, 1996: 254; Gilsenan, cited in Barnes, 1983). Control in the care environment is possible through the management of information and institutional rules that govern disclosure. It has been proposed that in the medical encounter, the absence of information results from the maintenance of authority and control (Tuckett et al., 1985; Heath, 1992). In the study of nurse-patient interactions and relationships ‘the issue...remains primarily one of control’ (May, 1990: 309). In communicating with older people, over-accommodation associated with ‘patronizing talk’ and restricting communication topics is an attempt to assume control over the older person (Hummert & Morgan, 2001; Edwards & Noller, 1993). May (1990: 309) suggests that control in the nurse-patient interaction may perform a ‘defensive function’ against institutional stress and anxiety that nurses experience in their daily care work. Work related stress is a function of the organisational context and occupational culture. The relational model of human interaction links institutional culture and context as impacting on relationships and by extension communication. In aged care that is task orientated and time starved little room exists for talk – talk takes time and offers a ‘burden of continuing care’ (Anonymous, 1980). Stressed care providers may not be able or willing to take on this additional care burden. 2.8
Nursing Home: Residency and Human Interaction
Australian aged care policy advocates care in a home-like environment (Clinton et al., 1996). Even so, Australian communication research in aged care recommends that the activities of older people when in their own homes is required to establish ‘
‘normative’ ‘homely’ data’ in order to conclude what is appropriate (Edwards et al., 1993: 256). A large European survey across the life span has concluded that generally speaking, the essence of feeling at home is ‘a feeling of being connected to significant others, significant things, significant places, significant activities, oneself and transcendence’ (Norberg, 2001: 157). The transition of the older person (resident to be) into the aged care facility (nursing home) has been discussed as ‘rarely …a positive life transition’ for the resident or the resident’s family members (Nussbaum, 1993: 238). Similarly, the observation of resident-staff interactions raises concerns about the notion of the ‘home-like’ environment (Edwards et al., 1993). With an emphasis on tasks (technical aspects of care) and a ‘paucity of social and supportive care’ the nursing home has been characterised as a ‘mechanistic warehouse model of long term care’ (Clinton et al., 1996: 17; Armstrong-Esther et al., 1994: 271) and ‘dormitories for those who are near death’ (Nussbaum, 1993: 245; Don Hughes, resident in Gubrium, 1993). An analysis of ‘home’ as a place for the care of the aged is important since how the care recipient and care provider conceive of this concept impacts on how persons conceive of their role and interpersonal relationship (Wilmot, 1995 cited in Nussbaum et al., 2001). When the older person acknowledges him/herself as a resident in their home, it might be expected by them that staff define themselves as ‘companions, quasi-servants or caretakers’ with the care focus on comfort and support…in a warm and empathic style’. In contrast, when staff conceive of the institution as a ‘statusmarked setting in which the concern is for professionalism and distance’ they may in turn avoid personal relationships. When the older person conceives of her/himself as a patient in a medical facility, it might be expected by her/him that staff define themselves as ‘nurses…whose primary goal is the technical, medical treatment of the patient’ with the care focus on formality, the impersonal and efficiency. However, in contrast staff may conceive of their task as the provision of the home-like environment. Residents in one study declared that the aged care facility feels like home (Martha Gilbert, resident); like home but not home (Lula Burton, resident); never home (Myrtle Johnson, resident) or a prison (Bea Lindstrom, Don Hughes, residents in Gubrium, 1993). The tensions between the differing orientations to the care circumstance underscore the possibility for miscommunication (Wood & Kroger, 1993: 270).
A number of defining characteristics further add to understanding the nursing home (residency). The ‘changing face’ of residency describes an older person who is at the end stage of his/her life (or illness) and therefore occupying the ‘home’ for a much shorter time than previously (QIRC cited in The Queensland Nurse, 2002: 10). Universally, care provision is task orientated (Oliver & Redfern, 1991). This is the provision of instrumental care rather than affective care, the provision of physical care rather than psychosocial or communicative aspects, with the aim to get the work done, to do rather than to be (Yates et al., 1995; Edwards et al., 1993; Clinton et al., 1996; Reed & Bond, 1991; Armstrong-Esther et al., 1994; Shaughnessey, 1989). The majority of this care - therefore time with the resident, is performed by the less educated, often untrained, personal carer (Burgio et al., 1990; Stillwell, 1993; Patterson, 1995; Anonymous, 1998; Mezey et al., 1999). As described by a personal carer we are giving production line nursing..don’t have time to sit and hold hands when people are dying..It’s just line them up, toilet them, shower them, throw them in the dining room, give them their food, back to bed and that is their day (Linda, carer at De Paul Villa Nursing Home, The Queensland Nurse, 2002: 8).
This understanding of ‘production line’ care resonates with the view that the nursing home is a ‘question of eat, sleep, eat, sleep and play bingo…You do the same all the time’ (Tom and Jane Malinger, husband and wife, residents in Gubrium, 1993: 135; Shawler, Rowles & High, 2001). In health care settings where the work ethic and culture takes precedence over individual’s needs, older persons have been observed to ‘passively accept’ help as doing what is ordered of them and fitting into ward routines (Roe, Whattam, Young & Dimond, 2001: 404; Sheldon, 1982). Care recipients who do not want to be informed may understand that it is not their role as a ‘good patient’ to question the ‘doctor (who) knows best’ (Leydon, Boulton, Moynihan, Jones et al., 2000). Additionally, this home away from home (Thorman Hartig, 1998) as with other nursing care contexts, is time starved (Fry, 1988; Armstrong-Esther et al., 1994; QIRC cited in The Queensland Nurse, 2002). For example, a qualitative study of nurses caring across general hospital wards highlighted nurses’ ‘frustration at the lack of time’ resulting in only attending to the patients’ physical needs (Forrest, 1989: 820). In aged care in the United States, Harington et al. (1998 cited in Mezey, Millar & Linton-Nelson, 1999: 46) calculated the average registered nurse time per resident in a twenty-four hour period to be thirty minutes with a median time of twelve minutes
or less. The researchers concluded this was because few registered nurses operate in nursing homes and ‘spend little or no time in direct care’. The primary researchers added that as such, the nursing home is an inadequate site for communication and decision making. Residents in one nursing home study identified their place as both short staffed and time starved. The nursing home staff were either too busy and did not have enough time (Jake Bellows, resident) or worked short staffed (Martha Gilbert, resident in Gubrium, 1993; Bwers, Fibich & Jacobson, 2001). In the Australian context, nurses are equally too busy, short of time and short staffed (Yates et al., 1995). Serghis (1998) reported that in Queensland, in some instances, ‘one registered nurse was caring for between 60-120 residents and that assistants in nursing and enrolled nurses were being required to care for 16 residents each, including having to toilet, bathe and assist with feeding, all in one eight hour shift’. In dementia care, staffing issues such as staffing numbers accounted for 26% of the most frequently cited stressors (Clinton et al., 1996). A number of personal carers testimonies concur: Residents ought not have to hear ‘no, we haven’t got time’…We are working with one RN and seven AINs to ninety-five residents (Frank) We always tell the resident “you come first” but how can we do that if we haven’t got the hours? (Rosemary) We have three AINs in the morning, two on in the evening for half the night and one for the rest of the night, that averages out to fifteen minutes per resident to toilet them every two hours and help them with their showers (Justin, carers at De Paul Villa Nursing Home, The Queensland Nurse, 2002: 8-9).
Edwards and colleagues study quantified their observations of nurse-resident interactions reporting that 64% of their observations were identified as procedural or instrumental, 11% involved some discussion about the resident’s fears or worries and one-third of the interactions lasted less than 9.5 seconds. Care providers acknowledge that ‘on current staff levels there are residents that we can’t even see in a shift’ (Justin, carer at De Paul Villa Nursing Home, The Queensland Nurse, 2002: 9). Researchers report residents acknowledging that staff do not listen (Yates et al., 1995), that the nursing home is a place where rules of conversation silence the resident (Kaakinen, 1992), that it is an unnatural environment conditioning residents to live with strangers, rather than family (Bitzan, 1998); a place where the resident’s ‘life is lived in slow motion with shuffling, pushing, pulling and sleeping (Higgins, 1998: 860) and that it is ‘well known that ...residents...can be isolated and have limited interpersonal relationships’ (Edwards et al., 1993: 247).
It seems therefore, that the nursing home – described as a ‘mysterious and depressing place’ and ‘negative’ (Mullins et al., 1998) does exist as a place which tends to create formal structures that minimize interactions (Nussbaum, 1993: 238, 241). The evidence above leads to the speculation about the adequacy of communication in these brief and very infrequent care provider-resident interactions (Clinton et al., 1996). Additionally, evidence of this kind enables researchers to question the ‘quality of (care provider)-resident communication when most interactions are instrumental in nature’ (parenthesis added, Edwards et al., 1993: 256). If residents and residents’ families are going to build trusting relationships, the care providers need to get to know the residents and residents’ families (LynnMcHale & Deatrick, 2000). 2.8.1
Time to care: Limited knowing
A considered view recommends that over a longer period (in healthcare), the truth may be withheld for compassionate reasons more readily. Here, the patient and physician or nurse know one another. They are more likely to have shared some of their values. In this context, it is more justifiable to withhold the truth temporarily in favour of more important long-term values, which are known in the relationship. (italics added, Thomasma, 1994: 378-379)
The emphasis within the above claim is on knowing the other and sharing values. This demands that the relationship is committed to engagement – therapeutic communication that shares information, insights and personal beliefs. As early as the mid-1970’s research sought to determine the duration of time nurses actually spend with their patients. Wells (1975, cited in May, 1990) determined in a study involving elderly patients that 4% of nurses’ time was spent in interpersonal care on a geriatric ward and 50% of the interactions lasted 0.5 minutes or less. Similarly, an elder patient sample, the mean duration of a nurse-patient encounter was reported at four to six minutes (Keck & Walther, 1977), whilst student nurse – patient interactions averaged two to three minutes (Faulkner, 1980). Further research amongst elder patient groups and their care providers reported that the time nurses spent with the patient was limited. Complementing the finding that 95% of the time elder patients had no contact with nursing staff (Armstrong-Esther, Scandilands & Millre, 1989), a study that observed nursing staff-patient interactions with lucid, confused and demented elderly patients conclude that outside the expected routines of care, there were very low levels of staff-patient interactions
(Armstrong-Esther, Browne & McAfee, 1994). The researchers reported that ‘at no time during the observation periods did staff engage patients in social activities or prolonged informal conversations’ suggesting ‘it would appear that nurses make strangers of their patients who become silent observers of ward/unit routine’ (Armstrong-Esther, Browne & McAfee, 1994: 264, 270). During an observational study of twelve fee-paying elderly residents in a privately operated nursing home, every resident mentioned informal talking as very helpful. As a source for this, nursing staff were not mentioned. Residents’ data revealed that because of limited time, nursing staff did not engage in chit-chat, though the researcher noted that their free-time was spent sitting at the nurses’ station talking amongst themselves. Overall, it appeared in this study that the role of the nurse in providing instruction and information to the residents was of less significance (Patterson, 1995). However, the significance of talking and listening, in care encounters is the way in which the patient comes to be known (May, 1995; Wallace & Appleton, 1995).
2.9
Summary: Literature Review
The review of the literature presents the complexity of truth-telling - preferences, practices and rationales, and thereby illustrating the usefulness of this research into the topic. An overview of the literature reveals truth-telling: •
exists on a continuum, may be contextual and includes forms of deception,
•
is intrinsically good, sustains autonomy and therefore promotes physical and psychological health,
•
is not possible since ‘truth’ is uncertain and telling the truth causes physical harm and psychological harm to self and others,
•
about diagnosis and prognosis is preferred by most patients,
•
is a common ethical issue in clinical practice,
•
does not impose a harm,
•
preferences are best served by asking,
•
determinations are weighed against guiding principles autonomy and beneficence/non-maleficence,
•
in clinical practice (and society) is variable across culture (and religion).
Evidence in the literature suggests truth-telling determinations must be guided by weighing autonomy against beneficence/non-maleficence when telling is perceived to be harmful. However, equally compelling and convincing is the view that telling another the truth is not harmful and actually promotes physical and psychological well-being. Additionally in the literature: •
open communication that shares information has a positive health effect whereas paternalism-parentalism that controls information and another’s decision making has negative health consequences,
•
generally speaking, nurses and family carers are not good at determining another’s physical and psychological needs, wishes and desires,
•
as caring behaviours, honesty and information sharing are not as important to nurses as they are to patients,
•
in telling the truth, intention to convey what is understood is important rather than determinations about ‘truth’ per se,
•
different sorts and types of ‘truth’ have been proposed, and
•
the nursing home is a task orientated and time starved environment that does not foster communicative engagement with the residents.
Furthermore, evidence in the literature suggests that the nursing home is a place that is under resourced in time and more conducive to tasks rather than talk. As such, nursing home care providers are ill prepared to determine what a resident’s truthtelling requirements really are. Consistent with the research aim and objectives, the literature revealed how general practice nurses, patients and doctors think, feel and act the way they do about truthtelling. Additionally, what emerged were conditions in which truth-telling operates and the consequences of the care providers’ and patients’ truth-telling beliefs, feelings and actions. What is not fully explicated within the existing literature is a like appraisal and insight into the perceptions about truth-telling by the resident and the care provider in the high level (nursing home) aged care context. The
following
chapter
examines
and
justifies
the
epistemology
(social
constructionism) and theoretical perspective (symbolic interactionism) underpinning the research. That is, it makes clear the researcher’s interpretive framework.
CHAPTER 3 INTERPRETIVE FRAMEWORK AND METHODS Methods are like the kaleidoscope: Depending on how they are approached, held, and acted toward, different observations will be revealed. (R)eality…is an object that moves and will not permit one interpretation to be stamped on it (Denzin, 1989: 235) Methods, after all, are developed and changed in response to changing work contexts (Strauss, 1987: 8).
3.1
Introduction
The following section examines the epistemology and theoretical perspective underpinning the research. This section makes clear the researcher’s interpretive framework by answering the following questions: •
What is the nature of knowledge that directs this project’s theoretical perspective and methods?
•
What is this theoretical stance that informs the methods in a way that logically supports their processes?
The understanding gained by answering these questions also underpins the data analysis described in Chapter 4. 3.2
Interpretive Framework
3.2.1
Social constructionism
As the epistemology underpinning this interpretive framework, the researcher approached the project with a teleology of understanding the complex world of care of the participants. This meant understanding the lived experiences of the participants from their view-point. In doing so, the research gained a “sympathetic introspection”, a deep sense of being on the inside of the phenomenon and consequently gaining insight (Wirth in Mannheim 1936: xx). With this telos it becomes clear that there resides a congruence between constructionism and the rationale for qualitative research as described in a forthcoming section. Social constructionist research takes as its object for inquiry the ‘situated meanings of the everyday life world’ of persons (Schwandt, 1994: 119).
A sharper line of distinction can be drawn, to facilitate a comprehension of social constructionism, by way of a brief contrast to the positivist research position. Postivism attributes credence to knowledge as hard or factual, only ever objective and thus real. It discounts ideas that knowledge resides equally in the subjective and can also be real ‘based on experience and insight unique and essentially of a personal nature’ (Cohen & Manion, 1994: 6). However, as Schwandt (1994: 125) attests, even that which is ‘said to be objective knowledge and truth is the result of perspective’. Social constructionism acknowledges a place for the subjective, in other words, stands as a non-positivist position that represents the world-view for this research. Additionally, positivism is described as both reductionistic and mechanistic as it seeks to measure precise quantities about people (Neuman, 1994: Cohen & Manion, 1994). This means it tends to gloss over or ignore subjective processes, including motives and intentions (Denzin, 1989). These precise measures are then extrapolated to construct a social reality that is nomothetic which fails to recognise that ‘mans (sic) specific humanity and his sociality are inextricably intertwined’ and therefore human behaviour is filled with variety, freedom of choice, individuality and moral responsibility (Luckman & Berger, 1966: 69)1. The perspective adopted in this research is one that recognises the social involvement of agents within a social context for meaning making through discussion, utilises insight gained through the retrospective and emergent contexts and through recollection about other like situations. This interaction, observation and retrospection make up the ‘agglomeration of reality and knowledge pertaining to specific social contexts’ (Luckmann & Berger, 1966: 15). A relativistic stance is adopted whereby a single phenomenon can be viewed resulting in a variety of meanings based on the different constructions from those engaged in the social interaction (Crotty, 1998). Participants
in
this research may
construct
different
meaning
from
their
circumstances. However, multiple perspectives need not be problematic. A ‘certain kind of relativism’ is called for that ‘keeps in view’ that differing persons hold differing but useful meaning that facilitates a variety of ways of knowing (Crotty, 1998: 64). Alternatively, Mannheim (1936: 254) contends that ‘not relativism in the sense of 1
The positivist position emphasises observation of behaviours that are assumed to be reliable, valid and intersubjectively verifiable. The non-positivist view taken here is more consistent with the dynamic, interactive, unpredictable, personal world of work within high level (nursing home) aged care.
arbitrariness but relationalism’ applies to this discussion. This means that the rightness or wrongness of a view, whilst unable to be determined absolutely, can be verified in terms of the perspective of a given situation. In sense, it seems that a rightful constructed meaning whilst not necessarily universal is fitting, constructive or in some way liberating (Crotty, 1998). A final derivative claim might be that social constructionism fails altogether to hold the subjective/objective binary in balance. However, in fact constructionism does achieve this. It is Crotty’s (1998: 44) discussion about ‘intentionality’ that supports this insight. Accordingly, intentionality is taken as the relatedness that the conscious (being/subject) has with the world (object). Through this relatedness the conscious (being/subject) is recognised through its relationship with the world (object) and vice versa. Crotty (1998: 45) concludes: Because of the essential relationship that human experience bears to its object, no object can be adequately described in isolation from the conscious being experiencing it, nor can any experience be adequately described in isolation from its object. Experiences do not constitute a sphere of subjective reality separate from, and in contrast to, the objective realm of the external world….the way of thinking to which intentionality introduces us, such a dichotomy between subjective and objective is untenable…
It appears then that social constructionism affords space to both the subjective and objective. In support of this it has been proposed that it is the recognition of this objective facticity and subjective meaning as the ‘dual character of society’ that makes its ‘ ‘reality sui generis’ ‘ (Luckmannn & Berger, 1966: 30). Prior to discussing the related theoretical perspective of symbolic interactionism (Crotty, 1998; Schwandt, 1997) a number of criticisms levelled at social constructionism need to be addressed. Multiple perspectives or accounts of some object are possible since, as it has been established, meaning or an account of some object is socially constructed. Therefore, critics may demand how any perspective can be deemed to be good (Schwandt, 1994). In reply, different interpretations of the same thing can be made ‘without denying that if those interpretations are accurate they must correspond in relevant respects to the phenomena described’ (Hammersley, 1989: 194). This response accords with the view that if an account equates with the ‘everyday reality’ it will be recognised as fitting and therefore useful (Strauss & Corbin, 1990).
3.2.1.1 Summary: Social constructionism In summary, the epistemological framework adopted for this research lies in social constructionism because it: •
acknowledges a place for the subjective thus allowing an understanding of the world outside of a positivist epistemology,
•
concerns itself with the construction of knowledge and therefore meaning through the social involvement of agents within a social context,
•
requires viewing the social context in which an act is embedded in order to comprehend or identify the act properly,
•
accepts multiple constructions of meaning are possible based on different constructions from those engaged in the social interaction,
•
holds together rather than splits the subjective/objective binary.
3.2.2
Symbolic interactionism
The following section addresses the second introductory question and also highlights the familiarity symbolic interactionism has with social constructionism. In Symbolic Interactionism: Perspectives and Methods the foundational ‘premises’ or ‘central conceptions’ have as their source of origin a number of George Herbert Mead’s perspectives about human group life, the nature of social interaction and social action (Blumer, 1969)2. Accordingly, human group life is not static. As such, society comprises of people engaged in action amongst themselves. Therefore, individuals in society whilst interacting with each other form human conduct. This interpersonal interaction is a formative process. Within the activity of this society are objects. Objects are ‘anything that can be designated or referred to’ and are ‘human costructs’ (Blumer, 1969: 11, 68). Consequently, an object can include other human beings, an institution, activities of others and guiding ideals – such as truth-telling. The meaning or nature attributed to the object derives from the social formative process. Therefore, the object’s meaning occurs by the way in which others act toward one’s self with regard to that object. Therefore, a central concept of symbolic interactionism is that individuals or groups of people act on things in terms of the
2 It is worthy to note that symbolic interactionism has multiple theoretical and methodological varieties (Denzin, 1992; Layder, 1994).
meanings things have for them, that comprise their world, derived from a socially interactive process (Blumer, 1969). Applied to this research, Mead’s symbolic interactionism explains that the meaning the resident has for a personal carer and registered nurse, for whom the resident is object, constitute the nature of the resident. This suggests that meaning is not intrinsic but arises from how the personal carer and registered nurse act towards the resident (Blumer, 1969: Denzin, 1989). Therefore, meaning attributed to an object can vary. Recognising the formative process of social interaction, it follows that the personal carer and registered nurse between themselves and amongst others form and transform the meaning of the resident by the way they and others act toward the resident (object). This forming and transforming of meaning toward objects underscores the interactive process that is a central concept in symbolic interactionism. Further understanding of this concept is achieved through inspecting the notion of ‘the self’ (Mead, 1934; Blumer, 1969; Woods, 1996). Meanings come from social interaction and the concept of ‘the self’. As Blumer contends the ‘possession of the self provides the human being with a mechanism of self-interaction with which to meet the world – a mechanism which is used in forming and guiding conduct’ (1969: 62, 2002). It is symbolic interactionism’s recognition of the ‘self’- as an object that humans recognise and consequently interact with, that facilitates self-interaction (Blumer 1969). The ‘self’ is not a psychological or physiological structure in this sense (Hammersley, 1989). Rather, it means that the self as ‘self’ ‘..arises in social experience’ (Mead, 1934: 140). This social process ‘self’ is one that assesses, notes, interprets – that is, is reflexive and reflective (Plummer, 1998; Giddens, 1995). Through this self-interactional process, the human actor imagines conditions and behaviours from alternative perspectives (the ‘generalised other’s’ perspective). In this process, meaningful objects are constructed by ‘self talk’. This is the selfengagement that goes on as a person ‘talks to themselves’ as they think through how others might respond. It is language or ‘ ‘symbolic communication’ (that) creates the conditions for far more subtle and complex forms of interaction’ (Layder, 1994: 61). In the case of the personal care assistant and the registered nurse engaged with the resident, meaning and action are constructed from the self-interaction and social
interaction. It is in this self and social interaction that ‘social or joint acts’ and ‘common meaning’ are possible (Blumer, 1969: 16, 153). What additional claims about symbolic interactionism can be derived from the above? Classically, symbolic interactionism is premised on Human beings act toward things on the basis of the meanings things have for them, meaning of such things is derived from the interactions one has with one’s fellows (sic), meanings are handled in and modified through an interpretive process (Blummer, 1989: 2).
This means that different groups will inhabit different worlds. Social or joint acts will subsequently alter with changes to the objects and meanings. It is this dynamic that transforms an individual’s world. The symbolic interactionist perspective recognises that in order to comprehend a group the researcher needs to comprehend the meaning of its world’s objects. In order to uncover this meaning, symbolic interactionits engage in naturalistic studies (Woods, 1996). As such, studies of this kind ‘render those worlds understandable from the standpoint of theory that is grounded in the behaviours, languages, definitions, attitudes and feelings of those studied’ (italics added, Denzin, 1989: 71). In other words, symbolic interactionists aim to “dig out” by direct, careful and probing examination the empirical social world’s shifting meaning (Blumer, 1969: 48; Plummer, 1998: 88). At this junction, how social constructionism melds with symbolic interactionism is examined. Symbolic interactionism stems from the thought of pragmatism and the ‘critical thrust of constructionism…maintained via exponents of pragmatism’ (Crotty, 1998: 61-62). A brief analysis of pragmatism is equally appropriate since the proponents of grounded theory (see Chapter 4) when dealing with the question of the relationship of theory to reality and truth ‘follow closely ...the ...pragmatist position’ (Glasser & Strauss, 1967; Strauss & Corbin, 1994; Schwandt, 1994). Charles Peirce argued that ‘in order to ascertain the meaning of an intellectual conception one should consider what practical consequences might conceivably result by necessity from the truth of that conception and the sum of these consequences will constitute the entire meaning of the concept’ (1934: para 9 cited in Hammersley, 1989). Therefore, pragmatism is a philosophy of action (Joas, 1987). It follows from the maxim that ideas are corrected through experience so that those
that work and therefore are retained are those that result in successful acts. Ideas that are rejected are those that fail to result in successful action (Hammersley, 1989). The generation of ideas or meaning are constructed within the social processes of experience3. Additionally, pragmatist John Dewey contends that in order to uncover the ideas or meaning
within
the
social
experience
researcher’s
must
‘...inspect
the
landscape...(and be) convince(d)...not by the plausibility of ...definitions and the cogency of ..dialectic, but by (the) …course of experiences of searching, doings and findings in consequences of which certain things have been found’ (Dewey 1925: 356 cited in Hammersley, 1989). Such a view resonates with naturalistic interactionism that typifies symbolic interactionism4. 3.2.2.1 Summary: Symbolic interactionism In summary, the theoretical stance adopted by this research to support the data collection methods is symbolic interactionism, since it: •
holds that meaning or the nature attributed to an object is not intrinsic to that object but derives from social formative processes, and therefore meaning about an object can vary,
•
holds that self-interaction and social interaction construct common meaning and social (joint) acts, and overall
•
supports naturalistic inquiry of this type aimed at uncovering meaning from the point of view of those studied.
3.3
Research Design
The section above has made clear the researcher’s interpretive framework and in so doing links with the research approach and methods utilised in addressing the research aim (see Chapter 1). 3.3.1
Rationale for selecting qualitative research
Qualitative research ‘scrutinizes at close range..the lived world of those being studied’ (Simmons, 1995; Gubrium & Holstein, 1997; Higgenbotham et al., 2001) 3
Therefore, no single or certain truth is possible – a view consistent with some pragmatists (Hammersley, 1989) and the previous discussion about social constructionism. 4 This concurs with the previously cited Meadian notion of imagining how it is from the point of view of the other. Through the pragmatist Mead to symbolic interactionism the social actor’s point of view is central to inquiry (Coser, 1971; Denzin, 1978).
attempting to comprehend, learn about and make sense of meanings ascribed to some particular phenomenon (Mullen & Iverson, 1982; Lincoln, 1992; Ambert et al., 1995; Denzin & Lincoln, 1994; Gardner, 1997). As such, the researcher sought to understand in depth (Ambert et al., 1995; Lincoln, 1992) the participants’ meaning(s) in an effort to theorize from their data rather than from any researcher predetermined categories and emphasised induction before deduction (Higginbotham et al., 2001). Qualitative research findings are important for their contribution to the knowledge base in aged care (Bowsher, Bramlett, Burnside & Gueldner, 1993). Additionally, the research is consistent with studies that have confirmed the importance of nurseresident communication for quality of life of nursing home residents (Edwards et al., 1993)5. Finally, the qualitative approach described in this chapter and evidenced in Chapters 4, 5, 6 and 7 is wholly consistent with the previously discussed epistemology and theoretical framework. 3.3.2
Overview of research design
Grounded within the epistemology of social constructionism and the theoretical stance of symbolic interactionism, research data were collected through group discussion, personal journal, follow up in-depth interview and researcher field notes. Participants were sought from a single, multi-centre residential aged care provider. The research design comprised a number of phases. These were:
Figure 3.1: Overview of research design
The following details the research processes: Ethics Clearance and Negotiation of Entree. 5
Furthermore, the view was taken that the description of a tightly controlled, quantitatively orientated study with an homogenous sample ‘may seem a long way from the diverse and vaguely defined problems that a clinician encounters in clients’ narratives’ (Ryan & Norris, 2001).
3.3.3
Ethics clearance
Research ethics clearance was granted through the appropriate institutions’ authority. Documentary evidence of research ethics approval is shown in Appendix 2, and a summary of the research ethics timeline is shown in Appendix 2.1T. In addition, the research was guided by a number of ethical principles specifically, confidentiality and autonomy. Confidentiality was respected through the codification of participants’ identities and the nursing homes’ names (see section 4.3 Data Organisation); the replacement of all real names within data sets; and the aggregation of data (see Chapters 5, 6, & 7). Autonomy, as respecting participants’ self governance and capacity for control, was respected through the researcher accepting participants’ choice to withdraw from the research (see section 4.5.2.3 Practicality & Logistics) and providing an opportunity to review the data in the followup interview (see section 3.4.4 Interview and section 4.6 Rigour in Qualitative Research). Finally, information sessions were conducted with each group of participants to ensure that research participants gave informed consent (see section 3.3 Research Design). Resident groups emerged through consultation with the registered nurse (Manager and/or Team Leader). The registered nurse was relied upon for her assessment of the resident’s cognitive capacity and capability to give consent (see section 4.6 Qualitative Research Sampling). 3.3.4
Negotiation of entrée
3.3.4.1 Prior to contact with the residential aged care facility In July 1999 the researcher met with the Manager-Nursing and Personal Care Services6. This meeting allowed clarification of understanding of the research process. The researcher gained a tentative insight into the organisation’s culture through the perceptions of the Manager of residents, care providers and research. The researcher’s field journal records, at this meeting, the Manager suggested that residents institutionalise themselves, (that carers) see care as tasks, as what they do (and their) low literacy, literacy skills (could mean that the) carers might find the journal scary
6
Entree into each centre was coordinated through either the Manager-Nursing and Personal Care Services or, in the case of the final facility, the General Manager. Contact with an aged care facility began with the researcher notifying the Manager-Nursing and Personal Care Services or the General Manager of his intention to visit a site.
An Information Package was sent by the researcher (following Schatzman & Strauss, 1973), ahead of telephone contact with an aged care facility Administrator and/or the Manager-Clinical Care Services. The Information Package contained a letter of introduction, a copy of the research abstract, a detailed research description that included findings from the preliminary study and a copy of both the Queensland University of Technology University Human Research Ethics Committee’s and ‘the organisation’s’ research ethics approval (see Appendix 2.4: Information Package). 3.3.4.2 Contact with the facility’s administrator and manager After seven (7) days, the facility was contacted directly by the researcher and an appointment made for a person-to-person meeting with the Administrator and the Manager-Clinical Care Services. This meeting allowed for clarification and began discussion about suitable resident participants7. The researcher gained an initial insight into the facility’s culture through the perceptions of the Administrator and Manager about residents, care providers and research. 3.3.4.3 Information sessions with potential participants The Information Sessions were conducted either during the staff’s regular weekly Work Improvement Team (WIT) meeting or during an afternoon shift, staff change over. This meant that staff were able to remain at the Information Sessions knowing that other colleagues were ‘out-on-the-ward’ attending to the residents’ needs. Information Sessions for the care provider groups (carer, nurse) were conducted separately. The decision to separate carers and nurses Information Sessions was made to accommodate differing levels of understanding as perceived by the Manager- Nursing and Personal Care Services (Daly, Kellehear & Gliksman, 1997; Schatzman & Strauss, 1973). Resident meetings were conducted on a needs/availability basis between the period of mid-morning until early afternoon to accommodate activities of daily living and residents’ energy levels. At any one aged care facility at least three (3) Information Sessions were conducted8. The duration of Information Sessions ranged from a 7
The outcome of this meeting was the establishment of meeting times and dates suitable for Information Sessions with interested research participants. Furthermore, the Manager-Clinical Care Services was then able to take time to consult with the nurses (Team Leaders) and the residents to determine those residents suitable – according to the selection criteria (see Chapter 4: Sample framing) and their willingness to participate. 8 At one facility, the potential carer participant group was divided into two groups which meant that four (4) Information Sessions were required.
minimum of fifteen (15) minutes with a carer group to a maximum ninety (90) minutes with residents. Overall, the average duration of information sessions for each participant group was forty (40) minutes. The Information Sessions followed a set procedure. The information was provided in three parts. The researcher introduced himself, gave the group insight into his professional research and clinical background, and his goals for the research in question. The researcher during this introduction relied on his use of ‘specific jargon’ to identify himself to the group as a nurse ‘member’ with minor aged care insight (Fontana & Frey, 1998: 58; Hosie, 1986; Patton, 1990). This began the researcherparticipant trust-rapport ‘fragile’ journey (Fontana & Frey, 1998: 60; Grbich, 1999; Miller & Glassner, 1997). The researcher’s field journal records a conversation with a Manager-Clinical Carer Services who commented, after an Information Session: I’ve spoken with the girls (carers)…(t)hey thought you explained it very well and they understood.
The researcher then detailed the study as per the Information letter/Consent form which outlined the study’s purpose, participant involvement (group discussion, personal journal and follow up interview) as voluntary, use of a tape recorder, the research benefits, the commitment to confidentiality (Basch, 1987), the possibility for feedback to participants, and the requirement for written consent. In the final informing phase of the Information Session, participants were told that demographic data would be collected and that interview times and locations would be negotiated in consultation with the participants and the Manager- Clinical Care Services. The researcher allowed time to respond to questions from the group. For example, potential participants frequently asked ‘What do you mean?’ As the researcher’s field journal recorded, a member at an Information Session said: Cn Info. Session: Do you mean we smile kindly but we actually want to ring his neck? You might find out we are all liars?
The researcher also stressed that participants ought not feel coerced in any way to participate. Importantly, the group was assured that they were free to ‘refuse to participate’ (Glazer, 1982: 54) and that it was necessary for the group members to think about committing to the project9. 9
At this stage participants who were willing to become involved in the research put their names on the Interested Participant Research list. Those on this list were given the Information letter/Consent form and a Personal Journal. Participants either signed the consent form at the end of the Information Session, or kept it for further consideration, to be returned later, signed or unsigned. This information –
In some cases group members were unwilling to sign or take consent forms after the Information Sessions. In facilities where the immediate response was muted, the researcher left the Information letter/Consent and Personal Journal with the Manager-Clinical Care Services. The outcome of this was that there were participants who did later agree to contribute and were then able to access the information in the researcher’s absence. 3.3.4.4 Setting up interviews: Care provider Only the final list of names of participants was shared with the Manager-Clinical Care Services. The names of the personal carer and nurse participants needed to be shown to the Manager so that suitable group discussion times and dates could be selected according to care provider rosters. The Manager required time to organise these interviews as care providers follow fixed rosters (fixed days and times on a rotational basis). Additionally, homogenous but separate nurse and carer groups on occasion comprised members from alternate rosters10. The outcome of utilising personal carers and nurses in the residential aged care setting was that the time between Information Sessions and group discussions ranged from one (1) day to ten (10) weeks. Overall, the average time between the Information Session and commencing a group discussion was two (2) weeks. 3.3.4.5 Setting up interviews: Residents A list of resident participants was generated by the Manager-Clinical Care Services in consultation with the nurses (Team Leaders) according to the research sample criteria (see section 4.6.1 Sample framing). Information Sessions then followed the set structure previously described. All printed matter for residents - Information letter/Consent form and Personal Journal Instruction and Nurse’s Story (see Appendices 2.4-2.6) were presented in size 14 font (‘larger type’) for ease of reading (Grbich, 1999: 103). The outcome of these sessions with the residents followed the response similar to the care provider groups previously described. However, there were two noteworthy names of interested participant, signed and returned consent forms, and the distribution of journals was recorded and filed for the benefit of the researcher only. 10 Furthermore, in the case of one group of care providers (and residents), the timing of the data collection phase was delayed and protracted by the care facility’s onsite redevelopment and relocation.
differences. Not all residents were physically capable of writing in the Personal Journal. Further discussion of the Personal Journal is taken up in section 3.4 Methods. In one case, a resident who consented to participate at an Information Session withdrew at the commencement of the Group Discussion stating she was ‘not prepared to name names’. The researcher’s offer of a one-on-one interview was rejected. In the case of the residents, either the Manager-Clinical Care Services or a delegated nurse (Team Leader) organised the interview time and dates. In all but two care facilities (see above, one day and ten weeks) the average time between the Information Session and commencing a group discussion with a resident group was two (2) weeks. 3.3.4.6 A failed negotiation of entrée In the period from February 2000 until the commencement of June 2000, a negotiation of entrée laboured at one facility, subsequently not included in the sample. Contact with the facility’s Administrator and Manager-Clinical Care Services occurred through the processes already described. Information sessions were conducted with personal carers and residents. The resident group contained eight (8) potential participants. However, at the time of the Information Session, two of the residents were asleep and one had gross expressive dysphasia. The researcher made five (5) visits to the facility, repeated the personal carer Information Session and re-scheduled the resident Information Session. Over a ten (10) day working period in May 2000, the researcher was informed that the Interested Participant Research lists could not be located, was put ‘on hold’, asked to ring back and telephone calls were not returned. The researcher acknowledged that a significant ‘…ouch!factor...an obstacle to research, which require(d) the researcher to step back and reconsider (his) options...’ was the Manager’s responsibility for preparing the care facility for Accreditation (Alty & Rodham, 1998: 275; CDHA, 2002, August; CDHA, 1998). The implication of this Accreditation process on the research is discussed in section 4.6.1 Sample framing. 3.4
Methods
3.4.1
Introduction
This section examines the research design element: methods. It makes clear the research’s interpretive framework by answering the following question: •
What techniques will collect data suitable for addressing the research objectives?
A variety of practical and substantive considerations was taken into account when deciding on what methods to employ in this research. The following details the use of and rationales underpinning the choices made for the range of chosen methods, namely – personal journal, group discussion, interview and field notes. 3.4.2
Personal journal
All participants were asked to keep a Personal Journal11. The front page, titled: Writing in your Journal, gave the research participant instruction about completing the journal (see Appendix 2.5: Writing in your Journal). This same page contained a space for recording the participant’s name, code, date of return, name of the aged care facility and care facility code12. Participants were asked to reflect on the story, make notes about what it meant to them, how they understood the story and to record any personal clinical incident that related to the story. Research participants were free to ignore the story and write about their own perceptions (opinions, feelings and views) about truth-telling in their aged care circumstance (Begley, 1999). The Personal Journal was distributed to participants prior to the group discussion. Research participants returned their journal either at the time of the group discussion or at a later time. In all but the last research facility the researcher returned to the aged care facility after an agreed time to collect the Personal Journals13. The distribution of the Journal prior to the group discussion allowed participants to read the Nurse’s Story, commence thinking and writing about the meaning and their understanding of truth-telling before and after the group discussion. The timing of the distribution of the Journal was considered important.
11
The journal was a small, ruled, exercise book. Residents as participants received Personal Journal instruction and Nurse’s Story in size 14 font for ease of reading (Grbich, 1999). 13 In the case of the last aged care facility, because of the travel time by road, journals were returned by post after a follow up telephone call. 12
Participants were assured of the nature of the researcher’s inquiry with a prior reading of the Nurse’s Story. This allowed preparation for the Group Discussion and was considered a strategy to foster the researcher-participant trust-rapport relationship (Basch, 1987). Additionally, having the Journal for a time after the group discussion allowed two events to occur. The participant(s), stimulated by the interaction, had the opportunity to write down ‘what he (sic) should have said’ such as a ‘ “juicy” vignette about something deemed important to the researcher from the projected view of the host’. Additionally, it gave the participant a further opportunity to reflect more deeply on what may have already been written and what had been discussed (Schatzman & Strauss, 1973: 88). The minimum length of time a journal remained in the field was one (1) week and the greatest length of time a Personal Journal remained in the field was twelve (12) weeks. Overall, the average duration a Personal Journal remained with a research participant was five (5) weeks. Personal carers, nurses and residents received the same story set. A total of four stories were utilised from the researcher’s earlier study (Tuckett, 1998a). The researcher purposively distribute the Personal Journal Nurse’s Story according to themes (see section 3.4.2.3 Nurse’s Story as guide). The distribution, duration and ‘completion’ of the Personal Journals per research participant group is summarised in Appendix 2.3T: Distribution, duration and ‘completion’ of the Personal Journals. 3.4.2.1 Rationales for the use of personal journal Domiciliary nurses (Morgan, 2001) and the elderly as research participants have made use of Personal Journals or diaries in previous research (Berman, 1994). For this research into the meaning of truth-telling within aged care, a decision was made to utilise the Personal Journal for reasons that relate to the nature of the topic and the research process. Writing in the area of aged research, Berman (1994) considers the Personal Journal (or diary) as having a long-recognised potential for illuminating a variety of aspects of social life. The researcher considered the topic as potentially sensitive and possibly threatening to participants. Based on this conclusion, the Personal Journal was deemed appropriate for a study about a sensitive topic (Lee, 1993). The journal was considered to assist in reducing participants’ level of threat since ‘any event becomes less threatening if it is repeated over time’ (Sudman & Bradburn, 1989: 55).
The Personal Journal also embeds ‘threatening topics into a more general framework to avoid conditioning..having the same effect as an anonymous form..’ (Sudman & Bradburn, 1989: 55; Lee, 1993: 97). During the Information Sessions, the researcher described the Personal Journal as providing the participants limited anonymity. Participants could reflect on their perceptions of the meaning of truth-telling outside the group discussion, knowing that only the researcher would read their views. For the research process, the Personal Journal contributed to the overall rigour of the research. The Journals provided another data triangulation method (Denzin, 1989) that improves credibility (internal validity) - see section 4.7 Rigour in Qualitative Research. 3.4.2.2 Personal journal limitations During a meeting with an Administrator and a Manager-Clinical Care Services of a residential aged care facility, the researcher noted in his field journal the Manager’s view that journalling will be OK for the nurses but the residents might find it hard (as theyresident) might find it stressful (and) some can’t (physically) write.
As already stated, elderly research participants have made use of Personal Journals or diaries in previous research (Berman, 1994). Not all nurses or personal carers chose to write in a Journal. The reason for this was unclear, although it may be that these research participants considered the Journal keeping ‘onerous’ with the consequent ‘sample attrition’ (see Appendix 2.3T: Distribution, duration and ‘completion’ of the Personal Journals) (Lee, 1993: 117). Those residents who did not ‘complete’ a Journal did so because of a physical incapacity. Those participants who wrote about their understanding of truth-telling how they thought about it and viewed their own and others worlds in the context of truth-telling, did so in their own ‘voice’ and their own hand. One resident participant made entries into her Journal through her use of a personal computer. The research experience showed the Personal Journal to be a valuable data source amongst research participants. 3.4.2.3 Nurse’s story as guide Tuckett’s (1998a) earlier study identified five themes: Intention, Motivation & Justification; An ethic ascribed to role; Relationships, persons & place; Lying-
deception dichotomy, and Culture of the Institution. The Nurse’s Story utilised within the Personal Journal (and where necessary, to initiate group discussion) represented four of these five themes14. Each of the earlier study themes were represented by a Nurse’s Story utilised in the current study. This representation can be summarised as follows in Table 3.1: Nurse’s Story
Theme
Caring for a woman who had Alzheimer’s
Intention, Motivation and Justification
Relative of a patient rings up
Ethics ascribed to Role
Poor old Gilly
Relationship, persons, place
A couple of shifts in a Nursing Home
Culture of the Institution
Table 3.1: Nurse’s story & theme (Tuckett, 1998a) utilised in the current research
The researcher purposively distributed the Personal Journal Nurse’s Story according to themes. Over the course of the research data collection period, the researcher monitored the distribution of the Personal Journal-Nurse’s Story in order to have the themes equally represented throughout the aged care facilities15. The distribution of the Personal Journal-Nurse’s Story according to themes is represented in Appendix 2.7T: Distribution of the Personal Journal Nurse’s Story according to themes throughout the data collection period. 3.4.2.4 Rationales for the use of nurse’s story as guide A statement or description of an event has been used frequently in research literature to elicit the meaning and perceptions of older adults (Hudson & Carlson, 1994; Hudson & Carlson, 1994a; Portonova, Young & Newman, 1984). Similarly, a description of an act and its consequences has been used amongst nurses for the purpose of investigating attitudes (Eker & Arkar, 1991; Snyder & Newberger, 1986). The use of a story, as an account by a nurse, in this research was aimed at initiating the research participants’ reflection about their understanding of what truth-telling means in aged care.
14
The theme ‘Lying-deception Dichotomy’ defined as ‘what distinguishes, if anything, one from the other in practice’ (Tuckett, 1998a: 296) was not represented by a Nurse’s Story for two reasons. In the earlier work, the lying-deception understanding emerged as definitional (general) rather than by reference to a specific case or incident or story. The researcher considered that in the current study this lyingdeception understanding would emerge as a consequence of the overall research process, namely through the Journal, Group Discussion and the interview (Reed, 1996). 15 When the sample size was smaller or greater than the four (4) Nurse’s Story, the Personal Journal was distributed to complement the pattern of distribution from the previous aged care facilities.
The use of these stories from Tuckett (1998a) was premised on the view that, at least in the case of the care providers, research participants would respond more favourably about a sensitive topic when it was attributed to a peer (Sudman & Bradburn, 1982). Furthermore, the use of the Nurse’s Story as a guide facilitated multiple group comparison and combination of data. Additionally, making the Story available prior to the group discussion as well as utilising the Story as a prompt within the group discussion prepared participants and added
balance
to
the
conversation.
This
preparation
contributed
to
the
aforementioned researcher-participant rapport-trust relationship. The Story as a guide brought ‘balance to the conversation’ in as much as it ‘set the stage for the (group) interaction with a …statement which prepare(d) participants for what was to follow’ – namely, a discussion about their understanding of the meaning of truthtelling (Schatzman & Strauss, 1973: 73). For the research process, the Nurse’s Story as a guide contributed to the overall rigour of the research. The Story as a guide contributed to the notion of member test of validity (Jaffe & Miller, 1994). Participants in the current study were able to discuss whether the stories rang true for them. This conclusion was deemed to be a dependable (reliable) research conclusion, as participants noted in their Personal Journal (Sudman & Bradburn, 1989): C3r: DE: Strange as it may seem, my story is the same as yours (referring to the Nurse’s Story: Poor Old Gilly) D1: DE: I have had the same question put to me from various residents asking about their deceased spouse (referring to the Nurse’s Story: Caring for a woman who had Alzheimer’s) EAO: DE: I would be exactly the same as this nurse…(referring to the Nurse’s Story: Caring for a woman who had Alzheimer’s)
In terms of the research process, the Nurse’s Story as a guide contributed to the overall rigour as it acted as a researcher check. The Nurse’s Story represented specific themes that emerged from the researcher’s prior interpretations. These prior interpretations were of data from amongst generalist nursing practitioners. The Story as a prior proposition ‘challenge(d) the understanding’ of both the research participant and the researcher (Schatzman & Strauss, 1973: 81). 3.4.2.5 Limitations to nurse’s story as guide As previously stated, the researcher noted the perception in a meeting with an Administrator and a Manager-Clinical Care Services at a residential aged care facility that
journalling will be OK for the nurses but the residents might find it hard as they (resident) might find it stressful (and) some can’t (physically) write.
The Nurse’s Story, as a guide for reflection in the Personal Journal, did not in itself overtly appear to inhibit the research process. The Journal attrition rate was 35% overall, in part as a consequence of the residents’ physical incapacity. It may have been the case that care providers who chose not to complete a journal were in some way inhibited by the Nurse’s Story. A nurse participant revealed the following specific objection to the story and its relevance. At the first aged care residential facility, within the first care provider group, a nurse wrote: First Impression:- Strange story!! Not enough info.’ e.g age of the patient!! – His mental status. Immediate thoughts are:- This is a story of the past!! Now days Drs. Treat the patient and “should” be accountable to him! (referring to the Nurse’s Story: Poor Old Gilly)
Additionally, at the Information Session, this same nurse suggested to the researcher ‘You don’t understand our work! What you read (theory) and what actually happens are different’. The nurse perceived the Story as irrelevant to her world and the researcher as an outsider. However, whilst the story was considered irrelevant, the ‘first impression’ does reveal something about the participant’s perceptions about context and roles. Her Personal Journal – thirteen (13) pages, concluded with an entry that read: Thank you Anthony for giving me something to think about! To take stock of my values and to reflect on the ways the truth can be told.
Participants who did complete the Journal, whether their writing was initially guided by the Story or from their individual world view, did so in their own ‘voice’ and their own hand16. 3.4.3
Group discussion as a ‘focused group depth discussion’
The Personal Journal with the Nurse’s Story as a guide triangulated with the Group Discussion as a data source (see section 4.7 Rigour in Qualitative Research for further details about Triangulation). The Group Discussion contained procedural and definitional characteristics akin to a focus group interview. Termed a Group Discussion, the following sections establishe the groups’ processes, characteristics and rationales as more aligned with a ‘focused group depth discussion’ rather than a strictly focused group interview per se. However, it is as focus group that the Group Discussion utilised here is defined and understood. 16
The research experience showed the Personal Journal with the Nurse’s Story to be of value as a data source amongst research participants.
Notwithstanding the semantics17, ‘the terminology to describe interview styles is not uniformly precise’ (May, 1991: 189). The Group Discussion utilised in this research had a focus, occurred within a group of research participants, aimed at complexity thoughtfulness rather than glibness or insincerity and was ‘interactive conversational’ more than ‘prior standardised’ (Lee, 1993: 110). Many agree that a focus group is carefully planned as a guided or standardised process that follows predetermined questions (Morrison-Beedy, Cote-Arsenault & Fischbeck Feinstein, 2001; Argirides, 2000)18. However, Morrison-Beedy et al (2001: 48) suggest that the guide can ‘range from one question, to a semi-structured set of questions, to a very specific guide’. The researcher’s Information Session and the use of the Nurse’s Story as a guide prior to and during the Group Discussion contributed to careful planning and guidance. Stating the purpose of the Group Discussion prior to its commencement and the use of an opening, guiding statement made the same contribution. However, the Group Discussion did not ‘follow predetermined questions’ in the form of an interview guide but relied on the Nurse’s Story as ‘one question’ (Morrison-Beedy et al., 2001: 48) or as a ‘prompt’ (Higginbotham, Albrecht & Connor, 2001: 241; Khan & Manderson, 1992). The emphasis was the focus on certain themes, avoiding guiding the research participant towards certain opinions about these themes (Kvale, 1983). The Group discussion - as a focused group depth discussion, relied on the social dynamic of the group easing its way to contribute into a normal conversation (Hurworth, 1999; Knodel, 1995). Similar in this regard to the focus group, the Group Discussion captured the process of communication in everyday interaction. Capturing this ‘everyday interaction’ meant that the researcher’s aim in utilising a Group Discussion was to ‘draw on people’s normal, everyday experiences of talking and
17
Writers propose that the focus group is a group discussion (Argirides, 2000; van der Heide, 2001) or a group interview (Hurworth, 1999; Kevern & Webb, 2001; Morgan, 1988). Alternatively, the focus group interview is not a group interview but it is a focus group discussion (Rice & Ezzy, 2000) or the focus group is a group depth interview (Bellenger, Bernhardt & Goldstucker, 1976; Calder, 1977). 18 For further confirmation about this claim see also (Greenbaum, 1988; Hurworth, 1999; Kevern & Webb, 2001; Krueger, 1994; Thomas, Steven, Browning, Dickens, Eckermann, Carey & Pollard, 1992)
arguing with families, friends, and colleagues about events and issues’ as they might in their everyday lives (Wilkinson, 1999: 225). As a consequence of capturing the ‘everyday experience’ of the participants life world, the purpose of the Group Discussion (as with a focus group) was to understand the participant’s perceptions on a defined area - truth-telling in aged care, by capturing their attitudes, beliefs, opinions, feelings, language, meaning, constructs and motives related to the topic (Basch, 1987; Rice & Ezzy, 1999)19. Furthermore, borrowing from Morgan (1988: 12), a ‘hallmark’ of the Group Discussion was the interaction between members. This encouraged further communication and debate leading to a wider range of information and the clarification of ideas amongst research participants (van der Heide, 2001)20. This Group Discussion synergy (Hurworth, 1999; Kevern & Webb, 2001) - as Kitzinger (1994: 107) articulates it in the context of the focus group, encourage[d] interaction between research participants; group dynamics work[ing] well [created] co-participants act[ing] as co-researchers taking the research into new and often unexpected directions and engaging in interaction which [was] both complementary (such as sharing common experiences) and argumentative (questioning, challenging, and disagreeing with each other).
An example of this Group Discussion synergy emerged when, in a carer group discussion, a member stated: D3: I have found that I agree with (D1) in what she said there because….
Similarly, a nurse challenged her colleagues over an expressed view, saying: DCI: The point being, you know we are kidding ourselves to say that we’re protecting the family, are we really equally protecting ourselves? DJJ: Yeah, hmmm. I mean we know we….
3.4.3.1 Rationales for group discussion The group discussion has been identified as useful in health research studying lifeworlds and health beliefs (Wilkinson, 1998). Specifically, the use of a group of research participants in discussion with a facilitator has been used in ‘many empirical studies of health and health care…’ (Sim, 1998)21. 19
See also (Dawson, Mandeson & Tallo, 1993; Hughes & Dumont, 1993; Hurworth, 1999; Krueger, 1994; Morgan, 1988, 1997; Stewart & Shamdasani, 1990; Zemke & Kramlinger, 1982) who similarly confirm the purpose of the group discussion. 20 (Beck, Trombetta & Share, 1986; Greenbaum, 1988; Morgan, 1997; Thomas et al., 1992) concur that group debate lends itself to a broader range of ideas and clarification amongst research participants. 21 Public Health research using this method includes canvassing beliefs about sensitive topics, namely sudden infant death syndrome (Yelland & Gifford, 1995) and perceptions surrounding dying and grieving (Braun, 1997).
Public Health researchers have utilised groups for the evaluation of health education amongst the elderly (Dahlin-Ivanoff, Klepp & Sjostrand, 1998)22. Additionally, this method has been used by nursing researchers, amongst nurses as participants (Duffy, Vehvilainen-Julkmumen, Huber & Varjoranta, 1998; Reed & Payton, 1997) and for examining work place cultures and practices (Frey & Fontana, 1991; Kitzinger, 1995). The use of the group discussion as a method for qualitative data collection has also been used in aged care research. Advocated as useful in gerontological research (Gray-Vickrey, 1993), the group as a qualitative data source has been used in crosscultural research of the aged (Knodel, 1995), amongst older women (Cousins & Keating, 1995) and disabled elderly (Quine & Cameron, 1995). Specifically, the group interaction has been the source for qualitative data amongst aged residents canvassing their opinions about lifestyle and health issues (Davis-McFarland, Trickey, Reigert, Shilling, Wager & West, 1998) such as the potentially sensitive topic of sexuality (Walker, Osgood, Ephross, Richardson, Farrar & Cole, 1998), the effectiveness of nursing care (Parke, Barnes & Mayhew, 1996) and views of elderly about their pain (Yates, Dewar & Fentiman, 1995). The researcher considered the nature of the topic – the meaning of truth-telling, as potentially sensitive and possibly threatening to participants. Based on this conclusion the Group Discussion was selected since interaction between the participants was considered helpful for participants to discuss issues that they may have felt initially too uncomfortable to talk about in an individual interview. Within the group, a participant seeing someone else with similar experiences or views was thought to be capable of making the other relaxed about talking (Rice & Ezzy, 1999). The group effect has also been identified as providing some anonymity and protection (van der Heide, 2001)23. For the research process, the Group Discussion is a method consistent with the research’s epistemology and theoretical perspective. As Blumer (1969: 41) contends
22
Public Health researchers have utilised groups elsewhere, namely , the determination of acceptability of mass media for AIDS education (Walsh-Childers, Treise, Swain & Dai, 1997) and to elicit the extent of youths’ knowledge about suicide (Coggan, Patterson & Fill, 1997). 23 This view was considered a guide as several writers contest and demonstrate that people in group discussions are willing to talk about sensitive topics (Argirides, 2000; Kevern & Webb, 2001; Kitzinger, 1994, 1995; Langer, 1979; Morgan & Krueger, 1993).
a small number of such individuals, brought together as a discussion and resource group, is more valuable many times over than any representative sample. Such a group, discussing collectively their sphere of life and probing into it as they meet one another’s disagreements, will do more to lift the veils covering the sphere of life than any other device that I know of.
The Group Discussion became a resource for the construction of knowledge and therefore meaning through the social involvement, the process of social engagement, of research participants within the group (Kitzinger, 1994). Furthermore, the Group Discussion supports the research’s aim to gain a ‘sympathetic introspection’ (Mannheim, 1936: xx) – a view of the understanding and meaning of truth-telling from the point of view of the research participants. This capacity is enhanced in a group setting since peers give members a sense of power and control (Zemke & Kramlinger, 1982; Kitzinger, 1995). The group discussion interaction ‘offers a stronger mechanism for placing the control over this interaction in the hands of the participants rather than the researcher’ (Morgan, 1988: 18). The empowered participants were considered the experts (Miller & Glassner, 1997). In terms of the research’s rigour the Group Discussion allowed participants to query any misunderstandings24. As an additional data source, the group data contributed to the triangulation (Denzin, 1989) of the data from the Personal Journal, the follow up interview and the researcher’s field notes. 3.4.3.2 The researcher as group facilitator Taking note of the focus group literature, many contend that the group discussion’s rigour rests with the skill and expertise of the facilitator (Argirides, 2000; Krueger, 1994; Greenbaum, 1988; Rice & Ezzy, 2000) . As the group’s facilitator the researcher is the instrument (Patton, 1990: 14; Higginbotham et al., 2001; van der Heide, 2001). The ‘instrument’ in this research is a nurse. The use of group discussion to obtain qualitative data ‘capitalises on skills and abilities that nurses already possess, including the abilities to gather detailed and often sensitive information from clients, apply therapeutic communication and interviewing techniques, and understand the intricacies of group process’ (Morrison-Beedy et al., 2001: 48).
24 The group dynamic allowed correction of any unintentional mistakes made by some members in the group through the participants challenging each other (Lupton & Chapman, 1995; Rice & Ezzy, 1999).
3.4.3.3 Group formation Following Information Sessions and obtaining lists of research participants, the researcher relied on the Manager-Clinical Carer Services at each aged care facility to organise Group Discussion dates and times25. Group discussions with the care providers were conducted either during the staffs’ regular weekly Work Improvement Team (WIT) meeting, during mid-morning quiet work periods or during an afternoon shift, staff change over. Guided by the same principle as the Information Sessions, a resident group was scheduled for discussion at a time between mid-morning and early afternoon to accommodate activities of daily living and resident energy levels. The researcher recorded in his field journal a Manager who suggested: Getting residents isn’t a problem, you can speak with them anytime
Residents were accessible. However, for the follow up solo interview the researcher always personally clarified the date and time with the resident to avoid overlapping with clinical tests, resident’s visitors or scheduled activities26. All research Group Discussions were conducted at the participants’ care facility. In all cases, group interviews were conducted in a designated area27. These areas comfortably accommodated residents using mobility aids (eg. wheel chair, walking frames and hoppers) and were observed by the researcher during his meeting with the Administrator and Manager-Clinical Care Services prior to the Information Sessions (Hurworth, 1999). 3.4.3.4 Strategies: Introduction, tape recording, field notes and conclusion At the commencement of each Group Discussion the researcher thanked participants for volunteering, again asked people their names, and reminded participants of the purpose of the research. Participants were also reminded that there was no right or wrong answer (Hurworth, 1999). The researcher began each group interview with a general statement from which the conversation was then allowed to flow. A typical opening statement was: 25
In the case of the care providers (carer, nurse) this required the Manager to account for staff rostering, annual leave and events specific to the facility (eg. on site relocation and redevelopment, Work Improvement Team meeting times and shift change over times). 26 Specifically, at one aged care facility this required meeting and checking with the Diversional Therapist. 27 A designated area included either a Staff Development room, Work Improvement Team (WIT) meeting space or a designated ‘quiet’ area away from the main ward.
Beginning wherever you like, the purpose of this conversation is to get you to talk to me and amongst yourselves about truth-telling. Truth-telling in your work day life, amongst yourselves – your fellow workers and the residents. What does truth-telling mean and how do you understand it in your working life?
Alternatively, within groups reticent to begin and throughout the discussion, to bring ‘balance to the conversation’, the researcher referred to the Nurse’s Story (Schatzman & Strauss, 1973: 73). For example, one Group Discussion began with the researcher saying: Have you all read the Story in your journal? How did that act as a stimulus for you – tell me what that triggered off for you, about your ideas about truthtelling?
All group and focus interviews were audio-taped (Folch-Lyon & Trost, 1981; Rice & Ezzy, 2000; Sim, 1998). The tape-recording aimed to counter criticism of qualitative research as ‘prone to systematic bias’ (May, 1991: 198). The recording of the interview facilitated auditability (reliability) of the data collection procedure and enhanced the current study’s rigour (Peräkylä, 1997). Research participants had been informed of the researcher’s intention to use a tape-recorder at the Information Session28. The presence of the researcher’s field journal also allowed him to record salient comments made after the tape-recorder had been switched off (Grbich, 1999). The researcher’s field journal was present during the Group Discussion. During the discussion these notes served two purposes. Field notes assisted with the discussion process, data collection and data analysis (see section 3.4.5 Field Journal and field notes). A strategy for aiding the discussion process and data recording was the researcher keeping a thematic log during the discussion (van der Heide, 2001; Rice & Ezzy, 2000). This meant the researcher noted directly into his field journal at the time of the group discussion, themes or ideas that the participants spoke about. This allowed the researcher to better process the discussion, adding balance to the conversation, by 28
At the very last aged care residential facility, during a meeting with the Administrator and ManagerClinical Care Services, the use of the tape recorder was questioned. The researcher’s field journal recorded the view: ‘What if people don’t want to be taped? We’ve just had an experience where what was said from tape was taken out of context, all the ‘ummms’ and ‘aaughs’ making people sound stupid…We’re (Administrator & Manager) not happy and I wouldn’t allow it..’ At no other time through out the duration of the research did research participants openly question the use of the tape-recorder. In response to the above view, the researcher emphasised his desire to capture the voices of the participants. At this care facility research participants did not refuse to speak in the Group Discussion with the tape-recorder present.
keeping track of ideas and themes, coming back to them for clarification and further discussion and elaboration (Patton, 1990; Hurworth, 1999). This logging of the commentary also provided the researcher with a permanent record of key ideas for use in summing up at the end of each discussion as well as for use later in analysis (Carey, 1995). Keeping a thematic log was also a strategy for recording a Group Discussion in the event that a member had refused to speak with the tape-recorder in place. As an example, an in-part entry in the researcher’s field journal shows: Thematic Log: Bngi: anxiety unnecessary disclosure factual report RMO experience distinction between factual report and filtering filtering as not bold cold fact
The field notes also assisted the researcher with data analysis. At the commencement of each Group Discussion the researcher drew into his notes a representation of the layout of the group and his physical position in it. Geographically, this meant the researcher deliberately placed himself within a loop or in the middle of a table in an effort to create a feeling of equality (Hurworth, 1999). This type of ‘representational map’ positioned the group members as they sat in the room, around a table, relative to the researcher (Denzin, 1989: 87). During the process of auditing and analysing the data, this visualisation enhanced the researcher’s sense of the data belonging to a person. The drawn setting of the discussion group made it possible for the researcher to re-listen to the audio-tape, read and re-read the transcripts with an image of the speaking person, held within the researcher’s ‘mind’s eye’ (van der Heide, 2001). At the conclusion of each Group Discussion the researcher utilised the thematic log to guide his summing up of emerging ideas and themes (Hurworth, 1999). Participants were asked to make a final comment (‘Is there anything further to add?’) or ask questions (Morrison-Beedy et al., 2001)29. The group was reminded of how the researcher would decide who would be included in a solo interview and the time he required between the group discussion and the interview for analysis of data (see Chapter 4: Data Management and Analysis)30. 3.4.3.5 Characteristics: Participants, locale, size, duration & frequency
29
In addition, demographic data were collected on the Demographic Information Sheet. Completed Personal Journals and outstanding signed consent forms were collected. The researcher negotiated a time to collect Personal Journals with participants who held onto the Journal after the Group Discussion. 30 All audiotapes and Personal Journals were coded and stored. All consent forms and demographic data were collated and separately stored.
The size of the membership of the Group Discussion ranged from three (3) - eight (8) participants. Of the thirteen (13) Group Discussions conducted over the five (5) residential aged care facilities, 46% contained a membership of three (3)31. Generally speaking groups as sources of qualitative data are defined as ‘small’ within a range of two (2) (Watts & Ebbutt, 1987) to ten (10) (Rice & Ezzy, 2000; Morgan, 1988). The duration of the Group Discussion ranged from 45 minutes – 11/2 hours with the resident group and 1 hour – 11/4 hours with care providers. Of the total of Group Discussions conducted over the entire residential aged care facilities, resident group discussions lasted an average 1hr 11minutes and care provider group discussions lasted an average 1hr 13 minutes32. All Group Discussions were conducted on-site at the research participants’ aged care facility. The space was familiar to the participants and provided a relaxed and relatively informal ambiance (Khan & Manderson, 1992; Morgan, 1988). The Group Discussion characteristics are summarised in Appendix 2.8T: Group Discussion characteristics. Two
other
issues
emerged
and
require
explanation:
group
membership-
homogenous or heterogeneous membership within the group and data saturation as a guiding rule for the formation of groups and subsequent data collection. Both of these issues are discussed in Chapter 4: Data Management and Analysis. 3.4.3.6 Group discussion limitations A number of limitations with the Group Discussion emerged in the field during the research while other limitations were pre-empted and countered. These limitations relate to three areas - group dynamics, the research process and a strategy utilised in the Group Discussion. The group dynamic, as potentially influential on a group membership interaction and data quality, was noted in two field journal entries. One particular Group Discussion was perceived to have been directed by a dominant group member such that the forceful individual attempted to alter the group outcome in the direction of her opinion 31
Focus group numbers range from as low as three (3) (Dodding & Gaughwin, 1995) to a high of twelve (12) (Bellenger et al., 1976; Dawson et al., 1993; Thomas et al., 1992; Zemke & Kramlinger, 1982). 32 In a focus group, the duration ranges from one(1) -two(2) hours and no longer to avoid fatigue, running out of ideas and participants becoming distracted by the thought of other issues to attend to (van der Heide, 2001; Wilkinson, 1999; Gubrium, 1993).
(McQuarrie & McIntyre, 1987; Thomas et al., 1992). The researcher noted in his field journal a conversation with a Manager: (A4) is very single minded, will try to control the group [told to the researcher prior to the Information Session]
A week after the Group Discussion, the Manager again commented to the researcher (as noted in his field journal): I heard that (A4) dominated the group’s conversation…she has some really good ideas…
The nurse was perceived to be controlling by her colleagues. The researcher so alerted, throughout the Information Session and the Group Discussion, was able to ensure that the entire group membership spoke and was heard. Additionally, the presence and careful management of the nurse considered to be dominant, generated the previously articulated ‘…interactions which [were] both complementary (such as sharing common experiences) and argumentative (questioning, challenging, and disagreeing with each other)’ (Kitzinger, 1994: 107; Arndt, 1994). At the same aged care facility, as a resident group was settling to commence the discussion, a participant commented as he was to take his position within the circle (as recorded in the researcher’s field journal): I’ll wait…he’s a prominent man [the speaker stood aside, allowing another resident to take his preferred position around the circle before the speaker seated himself]
Dawson et al. (1993) suggest that participants with different backgrounds can restrict the openness and sincerity of the discussion and there will always be games of status and power in the group (Hughes and Dumont, 1993). However, the (focus) group literature does recommend on the one hand that the members be acquaintances or familiar (Kitzinger, 1994; Jarrett, 1993) and on the other that they be strangers (Khan & Manderson, 1992; Stewart & Shamdasani, 1990). For the above incident and for this research issue generally, the researcher erred on the side of practicality and took the view that any group member effect would be small (Nelson & Frontezak, 1988). Qualitative data obtained in group interaction is not suitable for getting individual information from a group of people since responses from the participants are not necessarily independent (Thomas et al., 1992; van der Heide, 2001). Additionally, the duration of the group interaction can limit the nature of the data obtained. In the time
taken there may have been a limit to the capacity to explore complex beliefs and practices of an individual person. Similarly, due to time and the nature of group interaction this may have been a restriction on the depth of information the researcher obtained from a small group in a few hours (or less) (Rice & Ezzy, 2000). A counter measure to these research process issues included the distribution of the Personal Journal before and collecting the Journal after the Group Discussion to allow greater time and consequent detail. Also, those participants engaged in follow up solo interviews were able to add individualised understanding and depth to their commentary. Furthermore, the research process countered potential limitations that the nature of the topic may have brought to bear. Group talk may have silenced some not prepared to speak about ‘about their ‘secret’’ concerned with consequences (Rice & Ezzy, 2000: 92). As a condition of the research process, Carey & Smith (1994) contend that individuals whose perceptions are different from the majority will suppress their perceptions. As with participants who may have not been prepared to speak ‘about their ‘secret’’, those research participants concerned about revealing differing understandings of truth-telling in the group were able to reveal their views in the Personal Journal or later in the follow up, solo interview. A strategy employed in this qualitative research was the use of the tape-recorder in both the Group Discussion and the interview. Whilst none of the research participants overtly complained about the tape-recorder’s presence the researcher questioned, as have others, ‘How far did the research itself (for instance because I tape-recorded care providers and residents and made them self-conscious) influence the findings?’ (Tuckett, Boulton, Olson & Williams, 1985: 208). However, this potential threat to rigour was diminished through the use of the Personal Journal (see section 4.7 Rigour in Qualitative Research). 3.4.4
Interview
Individual participants were engaged in an ‘in-depth’ or ‘focus interview’ (Rice & Ezzy, 2000: 52; May, 1991) as a mechanism for the researcher to investigate in more detail the participant’s description of persons and events (Burns, 1996). The qualitative interview aimed to build upon the detail from the Group Discussion. The in-depth interview data became more sensitive to the central themes in the individual’s context and utterances (Kvale, 1983; Lee, 1993; Rice & Ezzy, 2000).
The in-depth interview, as with the Group Discussion, was focused - as guided by each individual Interview Guide, and conversational (Holstein & Gubrium, 1997). The Interview Guide delimited the interview as semi-structured. However, this standardising of the interview was determined by the research participant’s own narrative, own voice, or interpretations by the researcher of the participant’s own voice. Questions were ‘grounded in’ emergent themes and seemingly contradictory cases from the participant and the participant’s Group Discussion (Lee, 1993; Morgan & Spanish, 1984: 266). 3.4.4.1 Rationales for interview ‘In-depth interview is one of the most commonly used methods in health related qualitative research’ (Rice & Ezzy, 2000: 65). Research evidence and writers contend that the use of the ‘in-depth personal interview’ in Public Health (Daly, Kellehear & Gliksman, 1997), amongst the elderly and nurses as care providers (Wenger, 2003; Cox, Dooley, Liston & Miller, 1998; Trojan & Yonge, 1993) and in conjunction with group discussion (Hennings, Williams & Haque, 1996) is useful. Additionally, support exists amongst researchers for the use of the qualitative interview for seeking understanding of meaning about sensitive topics (Booth & Booth, 1994; Rice & Ezzy, 2000). As with the Group Discussion, the researcher’s decision to utilise in-depth interview as a method for qualitative data collection relates to the research’s process, namely issues of rigour and the theoretical framework. The use of an interview guide based on an analysis of the participants’ Personal Journal and Group Discussion contributed to the research’s rigour since thematic analysis and interpretation could be checked with the participants for accuracy and clarification (Keith, 1994; Schatzman & Strauss, 1973). ‘Member checking’ (Forrest, 1989: 817; May, 1991) ensures that the participant’s voice is captured as the participant meant it to be and that the participant’s meaning is understood. In keeping with the research’s theoretical stance, the in-depth interview in this current study was ‘interactional’ (Rice & Ezzy, 2000: 53). As a ‘lengthy’ (Schtazman & Strauss, 1973: 72) and ‘special form’ (Holstein & Gubrium, 1997: 113) of ‘conversation’ (Denzin, 1989: 110), the researcher accepted that data were coproduced in the process of dialogue, negotiation and understanding, a view consistent with the interview process as a symbolic interaction (Kaufman, 1994).
3.4.4.2 The researcher as an interviewer The researcher as the interviewer ‘is the method, the instrument’ (Kvar, 1983: 178; Mays & Pope, 1995; Angen, 2000). The capability of the researcher to conduct the interview has been established on the grounds of skills and abilities he has as a nurse-researcher (see section 3.4.4.2 The researcher as an interviewer). 3.4.4.3 Interview formation The Interview followed the Group Discussion (Morgan, 1988). Once an initial analysis of the Group Discussion data and Personal Journal data had occurred and an interview guide had been constructed, the research participants were contacted-(a discussion of the interview guide is taken up in the next section). The researcher relied on the Manager-Clinical Care Services at each aged care facility to organise interview dates and times. For the care providers (personal carer, registered nurse), the organisation of single participant interviews was less complicated than the organisation for Group Discussion. Resident interviews were timed to occur as per the Group Interview, (previously discussed)33. 3.4.4.4 Strategies: Introduction, tape-recording, field notes, interview guide, and conclusion As the interview34 was semi-structured, field notes were not taken during the course of the interview. The interview guide provided the researcher with a record of the key ideas and this was utilised in summing up at the end of each interview. However, at the end of an in-depth interview, after the research participant had gone from the interview room or the researcher had left the resident’s room (to his car), the researcher recorded into his field journal ideas and themes that were becoming clearer or were considered additional (Rice & Ezzy, 2000). For example, after an interview with a personal carer the researcher recorded in his field journal (partial entry only): D2 ii Assessment of really wants to know Æ (a) ‘guilt’ time and (b) capable Acknowledged ‘tension’ that ‘gauging’ Vs ‘resident can sense it’ brings. That is = closed awareness/mutual pretence 33 Interviews were conducted either in a designated area at each participant’s care facility or, in the case of most residents, in their own, single room. More than one individual interview was possible per care visit across participant groups. 34 At the commencement of each in-depth interview, the researcher thanked the participant for agreeing to continue with the research and reminded the participant of the purpose of the research and the interview. As with the Group Discussion, the interview was audio-taped.
Little open discussion about death & dying: Carer and resident’s wife share an ‘awareness’ but carer revealed ‘No, I am afraid to use the word” (death/dying).
The researcher took as imperative the use of the verbatim text, the exact words and emphasis, as an essential element in the construction of the interview guide (Morgan, 1988). This meant that the researcher did not merely ‘read out’ the participant’s comments but engaged with the words in an effort to deliver the participant’s narrative back to them with a genuine sense of their voice - how they said it at the time. During one interview, a participant commented (as noted in the researcher’s field journal): C3: Yes…that’s exactly how I said it, I would have said it just like that..
The interview guide contained open ended questions. The questions were structured in four ways. These question types (following Rubin & Rubin, 1995) were elaboration, verification, combination-clarification and co-participant check. An elaboration question relied on the researcher’s asking the participant to ‘comment further’ on or ‘explain more’ about a selected section of the participant’s narrative from the group discussion and/or their journal entry. This type of question is evidenced below (bold text indicates researcher’s voice/ideas): In the group conversation you talk about truth-telling as the best policy but also you say: … I just think that telling the truth is the best policy and it’s how you tell it and the timing, and how the residents can cope with the emotions. You have to assess them… Now, should I tell them? If she really wants to know, it’s their right they should know. Comment?
A verification type question sought to check the researcher’s understanding, conclusions, or ideas about what was emerging within and across the participant’s data (Schatzman & Strauss, 1974). The following is an incomplete excerpt from an interview guide of a nurse, as an example of this type of interview question: Comment further on … I personally don’t see that as protecting us, but by the same token the family may see it that way… As this reads it suggests: You omit to disclose to family an event or behaviour of a resident that (1) you perceive/gauge/judge will cause upset to the family, (2) over which the family has no control and (3) fails to alter the overall resident’s care plan? Comment? Additionally you are saying:… Therefore, can I conclude that truth-telling as understood as …
about a resident - risks being understood by family as ‘protecting’ the carer? If so, you take this risk, because you understand truth-telling more importantly as avoiding or preventing harm to the family?
The third type of question on the interview guide, combination-clarification, was utilised in two ways. The research participant was presented with complementary narrative from the Group Interview and their Personal Journal in order to check the researcher’s understanding and interpretation of the research participant’s opinion. Additionally, the researcher presented the participant with what was perceived to be contradictory or ambiguous points of view within (same source) and across (differing sources) of the research participant’s data (Rubin & Rubin, 1995; Anderson, Standen & Noon, 2003). This type of question aimed to determine if the perceived ambiguity and contradiction was a communicative failure in the Group Discussion or within the Personal Journal or ‘whether they reflect(ed) real inconsistencies, ambivalence and contradictions’ by the research participant (Kvar, 1983: 177). An example of this style of questioning generated from within the same source (group interview) occurred in a nurse’s interview: In group discussion you stressed “we must listen to the family..family knows best based on length of involvement (with relative)”, and that assessments about truth-telling to a resident perceived as “family” (by carers) where “risky” since this required “knowledge about the family history” Would you like to comment about this ‘listen to family’ and ‘risk’? Researcher’s interpretation: (knowledge as domain of RN not carers) Whilst you stressed the need to “listen to the family..” you also suggested situations do exist when you decide to tell the resident something even though the family has asked you not to eg “don’t tell them (res.) we’re coming up. What is your thinking here?
A final type of questioning on the in-depth interview guide was aimed at coparticipant checking. Consistent with the interview process as a symbolic interaction (Kaufman, 1994) the researcher introduced research participants’ ideas and perceptions that originated within a group (eg. nurse-nurse, resident-resident) (May, 1991) or across groups (eg. nurse- carer, carer-nurse, care-resident). The aim of this type of questioning was two fold. On one hand, to facilitate group comparison and, on the other hand to stimulate a response that was either complementary or argumentative (Schatzman & Strauss, 1973). The following is an example of this type of questioning, taken from a nurse’s Interview:
D JJ proposed that truth-telling is understood as easing and omitting becoming in practice – truth disclosed and truth omitted, where what is omitted is harmful or damaging or upsetting Additionally she said you are not telling them a lie, you just not telling them all the pieces. Comment?
The final two question types - combination-clarification and co-participant check, were purposeful. That is, the researcher rather than ‘searching for the best or most authentic answer, aim(ed) ...to systematically activate applicable ways of knowing – the possible answers – that respondents can reveal, as diverse and as contradictory as they might be’ (Holstein & Gubrium, 1997: 125). At the conclusion of each interview the researcher utilised the guide for his summing up of emerging ideas and themes (Hurworth, 1999). Participants were asked to make a final comment (‘Is there anything further to add?’) and invited to ask questions (Rice & Ezzy, 2000)35.
35 The researcher and research participant discussed the research’s progress, the availability of findings and then the interview concluded.
3.4.4.5 Characteristics: Participants, frequency and average duration The semi-structured interview was a focus or in-depth interview between the researcher
and
the
research
participant.
Contingent
on
the
researcher’s
determination of interview participants, a total of twenty-five (25) interviews were conducted. The validity of the claim that there is ‘no cookbook recipe for interview’ (Schatzman & Strauss, 1973: 83) resides in a universally accepted interview duration (time). These authors recommend a longer rather than a shorter interview time which may in practice extend to an hour or more (Kvale, 1983)36. The focus or in-depth interview utilised in the current study fits into the thirty (30) – ninety (90) minute range (Rice & Ezzy, 2000; Gubrium, 1993). The range for the average duration of the semistructured Interview was from forty-five (45) minutes to one hour and fifteen, (75) minutes. The breakdown of interviews across the research participant type and the average duration of the Interviews per research participant type are shown in Appendix 2.9T: Semi-structured, in-depth interview characteristics. The process for qualitative data collection at the final aged care facility requires explanation. The interview process was conducted as previously described for the Group Discussion. At this final residential aged care facility, none of the carers or nurses was followed up for the in-depth Interview. The residents (N=2) were interviewed in a one-on-one situation. Through the processes previously described (see section: Negotiation of Entrée) the researcher was unable to establish a resident group for discussion. Follow up interviews for the care providers were deemed unnecessary premised on the rule of data saturation (see Chapter 4: Sample framing). At this stage of the research, as demonstrated elsewhere, the researcher’s assessment of data saturation meant that additional sessions were not required and would have only prolonged the collection and analysis of data (Lettenmaier, Langolis, Kumah, Kiragu, Jato, Zacharias, Kols & Piotrow, 1994).
36
Fontana and Frey (1998) consider a qualitative interview can be a brief, five (5) minute telephone conversation or a more lengthy interview over many sessions.
3.4.4.6 Interview limitations A number of limitations with the in-depth Interview emerged in the field during the research or were pre-empted and these were countered. These limitations relate to the process of research and potential bias with the method. During the process of doing the research, the researcher was acutely aware of the time required for analysing Group Interview and Personal Journal data effectively for the development of an authentic interview guide. The time taken for this process of analysis and follow up in-depth interview ranged from three (3) – ten (10) months. Consequently, the researcher initiated two strategies. The first strategy aimed to keep participants informed, maintain their interest in the research and to show participants respect. The researcher wrote a letter either to the Manager-Clinical Care Services or directly to the participants, explaining the analysis and the research’s progress. The second strategy was the use of the verbatim text and emphasis during the interview, as previously described. This strategy of using the participant’s authentic voice re-established the interviewee as the ‘expert’ (Rice & Ezzy, 2000: 59). As Taylor & Bogdan (1998: 99) suggest ‘indepth interviewing requires an ability to relate to others on their own terms’. In addition, because of this strategy, participants were able to see that the researcher considered their views seriously and presented them honestly. Early in the research process the researcher became aware that ‘in-depth interviewing is difficult to do well’ (Rice & Ezzy, 2000: 68) even though, as a nurse, he bought to the current study ‘…skills and abilities…’ in ‘…interviewing techniques…’ (Morrison-Beedy et al., 20001: 48). Reflecting in his field journal, whilst at the first aged care facility, he wrote: MN: Allow resident time to answer, don’t bombard with questions, speak less and stop talking over people, don’t fill front of the tape with administrative stuff.
Only as a consequence of being a critically reflective researcher did the interview improve. This meant that the interviews emerged as ‘done well’ and the researcher learned that ‘the hardest work for most interviewers is to keep quiet and listen actively’ (Seideman, 1991: 56). Contamination may be a limitation with the in-depth interactional interview since meaning making occurs as a product of talk between the researcher and the
research participant. Proponents of the in-depth, interactional interview admit to the view that participants ‘reciprocally influence each other’ (Fontana & Frey, 1998; Kvar, 1983: 178). Therefore, the researcher as interviewer is not neutral. The notion of the researcher as neutral stands in contrast to the interview as a symbolic interaction. Typically, the neutral researcher aligns with positivism, in contrast to a non-positivistic (qualitative) paradigm in which this current study resides. Additionally, since the neutral researcher rejects meaning making occurring as a product of talk, s/he risks ‘more superficial data’ (Rice & Ezzy, 2000: 56). This qualitative research sought description and the understanding of meaning beyond mere superficiality. 3.4.5
Field journal and field notes
An integral element of the research process was the researcher maintaining a Field Journal. The Field Journal (or ‘research diary’) contained the researcher’s notes of his ‘perceptions and interpretations of events’ (Blaxter, Hughes & Tight, 2001; Grbich, 1999: 89)37. The style and format of note taking can vary (Blaxter et al., 2001; Grbich, 1999). The style and format of Journal keeping for this research is detailed in a following section38. 3.4.5.1 Rationale for field journal Whilst the researcher did not engage in observational field work, nevertheless the importance of keeping field notes is emphasised by the view that they are ‘the most important determinant of later bringing off a qualitative analysis. Field notes provide the observer’s (researcher’s) raison d’etre. If he (sic) is not doing them, he might as well not be in the setting’ (Lofland, 1971: 102 original itallics, parenthesis added). In this research and amongst others, ‘taking field notes’ was or is, never ‘optional’ (Patton, 1990: 239). The Field Journal became another ‘data source’ and contributed to the research’s rigour in the context of data triangulation (Higginbotham et al., 2001: 247; Rice & Ezzy, 2000). Taking notes as they were fresh in the mind – during Group Interview, immediately after in-depth interview and throughout the entire research process contributed to analysis (Morrison-Beedy et al., 2001). As Flick
37
Others agree including Rice & Ezzy, 2000 and Willms, Best, Taylor, Gilbert, Wilson, Lindsay & Singer, 1990 38 The keeping of field notes in the Journal started with the meeting with the Manager-Nursing and Personal Care Services and continued throughout the entire research project.
(1998: 170) recommends ‘the production of reality in texts begins with the taking of field notes’. Journaling the research process provided the researcher with a record of the research context, critical incidents, aspects of data collection and his immediate but also ongoing perceptions and interpretations. Elements of this record, ‘interwoven with the final presentation of text’ assists the researcher in presenting a more ordered, plausible and authentic report (Grbich, 1999: 90; Schatzman & Strauss, 1973). 3.4.6
Field journal: Field note style, format and idiosyncrasies
Notes were kept on paper in a fixed leaf, A4, note book. Each entry was dated, titled and in the case of transcription (data) text, labelled down the left-hand column with a code-theme name. The researcher’s Journals were regularly photocopied and these copies labelled and stored in a locked filing cabinet. One Journal contained notes about coding – the process, the relationship between themes and code-theme definitions. It also contained rules for the final presentation of data from transcripts. Additionally, this journal assisted in keeping a content record of the types of specific entries that were kept in the main Field Journal. This content record assisted the researcher in the research write-up phase to easily locate salient entries in the main Journal. The main Field Journal, carried by the researcher into the field, comprised of entries that recorded the research context, critical incidents, aspects of data collection and the researcher’s immediate but also ongoing perceptions and interpretations (Patton, 1990). This main journal format and note style evolved as a unique text that borrowed from Schatzman & Strauss (1973). Table 3.2 below, outlines the main Field Journal notes used by the researcher in this current study, as derived from Schatzman & Strauss (1973: 95-107): Table 3.2: The main field journal format derived from Schatzman & Strauss (1973)
Observational Note (ON): Verbatim record of ‘statements bearing upon events principally through listening… ...They contain as little interpretation as possible… ...A piece of evidence for some proposition… ...It tells who said or did what… … It records actual conversation…’ Theoretical Note (TN): Researcher’s ‘self-conscious, controlled attempts to derive meaning from…observational notes… … Researcher ‘interprets, infers, hypothesizes…develops new concepts, links these to older ones…’ Methodological Notes (MN): ‘A methodological note is a statement that reflects an operational act completed or planned: an instruction to oneself, a reminder, a critique of one’s own tactics. It notes timing, sequencing, stationing, stage setting, or manoeuvring (sic). Methodological notes might be thought of as observational notes on the researcher himself (sic) and upon the methodological process itself…’
This notation was the style applied to the ongoing analysis of the research data. Not every Field Journal entry demanded a methodological note (MN). The data analysis process will be detailed further in Chapter 4: Data Management and Analysis. An example of a typical Field Journal entry, written for a carer’s Personal Journal, reads as follows: Tt trumped Pain, hurt
Tt as Conditional
DE: ON: D1: I believe these people should always be told the truth, they expect it, but only if it is not going to cause them unnecessary pain or emotional hurt. DE: ON: D1: Truth-telling in a nursing home in everyday life is one of the most important things we can do. TN: Truth-telling is conditional. General understanding amongst residents is that they do expect it (carers know this – d:43: res’ wants to know). Whilst truth-telling is important, it manifests in a variety of guises and within numerous and varied interactions. Consider this carer’s previous claim for ‘stretching the truth’ (see over previous) to maintain a ‘happy’ and ‘comfortable’ ‘last days’.
Idiosyncratic characteristics of the researcher’s main Field Journal related to the Theoretical note (TN) and the Methodological note (MN). In this research, data analysis commenced after the first Group Interview and with the return of the first Personal Journals and was ongoing. Consequently, over time the Theoretical notes (TN) became large, complex and more abstract. Schatzman & Strauss (1973: 104) recommend that these more elaborate and abstract statements ought to be recorded as ‘analytic memos’ – separate from the Theoretical notes (TN). This was not adopted by the researcher in the main, however, as the Theoretical notes (TN) cumulated it became obvious that they would ‘become the heart of the (researcher’s) final set of ideas, and that they (would) lie at the very core of his (sic) publication’. As the Theoretical notes (TN) became more elaborate and abstract, the Field Journal was also used to assist in keeping track of the literature that supported the emerging concepts and ideas. The Methodological note (MN) recorded a number of research process and analysis related elements. Research process related Methodological notes (MN) included sampling rules and decisions, and notes about researcher interview performance. Methodological notes with a focus on analysis included the researcher’s speculation about data saturation, recording perceptions about the analysis process and rules, speculation about ‘missing data’ (Singh & Richards, 1999) and the investigator triangulation process (Patton, 1990).
3.5
Summary of Research Design: Data Collection
The following summarises the methods used in the current study, namely Personal Journal with the Nurse’s Story as a guide, the Group Discussion, the Interview and the researcher’s Field Journal. Data collection (Personal Journal and Group Discussion) is summarised as follows in Table 3.3: Table 3.3: Data collection (personal journal and group discussion) Resident Total Total Out Done 19 6 Approx duration out (week)
Personal Journal Carer Nurse Total Total Total Total Out Done Out Done 23 18 15 13 Approx Approx duration out duration out (week) (week)
2
Resident Group size range 0a-6 Duration (hour) range ¾ - 11/2
Group Discussion Carer Nurse Group size Group size range range 3-8b 3-4 Duration Duration (hour) (hour) range range 1 – 11/4 1 – 11/4
4 8 No Group Interview at final aged care facility with residents; provider group
a
b
Heterogenous: first care
The strengths of the Personal Journal with the Nurse’s Story and the strength of the Group Discussion as methods, are summarised in Appendix 2.1.0T: Strengths of the Personal Journal with the Nurse’s Story as a guide; and Group Discussion as methods. Data collection (Interview) is summarised as follows in Table 3.4 below: Table 3.4: Data collection (interview) Interview Resident Carer Nurse Total Interviews Total Interviews Total Interviews 10 8 7 Interviews conducted per Interviews conducted per Interviews conducted per site (range) site (range) site (range) 0a-3 0a-3 0a-3 Duration (hour) range Duration (hour) range Duration (hour) range ¾-1 ¾ - 11/6 ¾ - 11/4 a Indicates that at some aged care facilities, no interviews were conducted
The strengths of the Interview and the Field Journal as a method are summarised in Appendices 2.1.1T: Strengths of the Interview as a method and 2.1.2T: Strengths of the Field Journal as a method.
CHAPTER 4 DATA MANAGEMENT AND ANALYSIS Research is both a creative and destructive process; we make things up and out of our data, but we often inadvertently kill the thing we want to understand in the process. Similarly, we can preserve or kill the spirit of qualitative work; we can soften our notion of rigor (sic) to include the playfulness, soulfulness, imagination, and technique we associate with more artistic endeavours, or we can harden it by the uncritical application of rules. The choice is ours: rigor (sic) or rigor mortis (Sandelowski, 1993: 8). …I admit some of this process (data analysis) took place at a creative level that I am not able to translate entirely in terms of concrete language simply because it takes place at a level that is too abstract to be represented concretely (Rose & Webb, 1998: 561).
4.1
Introduction
Chapter 3 established the epistemology (social constructionism) and theoretical perspective (symbolic interactionism) underpinning the research. It made clear the researcher’s interpretive framework and justified the methods (personal journal, group discussion, interview and researcher field notes) that were utilised to collect qualitative data. The following chapter details the mechanisms for data management and processes for data analysis. Meticulous and systematic data collection, management and analysis were fundamental for the production of quality qualitative research. The researcher was mindful not only of the need to meld methods and analysis with interpretive framework, but also to make real the need for ‘weighted consideration of both how data collection is conducted and how analysed data are presented’ (Ezzy, 2002: 50). 4.2
How Analysis is Understood
4.2.1
Thematic analysis informed by grounded theory
Thematic analysis of data in this research has relied on systematic processes common to the grounded theory ‘methodological package’. However, because of purposeful (theoretical) sampling limitations (see earlier Chapter 1 and forthcoming section 4.5.1: Sample framing) cannot claim to be ‘pure’ grounded theory (Glaser, 1999)1. Influenced by Strauss & Corbin (1998) and Charmaz (1990, 2003) and mindful of Glaser (1999), analysis here relied on the following procedural elements deemed necessary for grounded theory: concurrent data collection and analysis (Ezzy, 2002; Wilson & Hutchinson, 1996) enabling constant comparison of data for verifying theorising throughout the course of the research (Strauss & Corbin, 1994; Ezzy, 2002), purposeful (theoretical) sampling (Robrecht, 1995; Barnes, 1996; Wilson & Hutchinson, 1996); following the atypical (negative) case (Olshansky, 1996), memo writing and member verification of theorising (Strauss & Corbin, 1998; Barnes, 1996). The essence of analysis in this research involved the comparison of pieces of data judged to belong to a particular theme, in an effort to recognise the
common feature of that theme. Incidents or events were coded (labelled) in terms of as many themes as were relevant and then these incidents or events within the theme were compared. The aim was to develop a set of logical themes and associated characteristics (exemplified by sub themes which together formed a ‘story’). Ongoing developmental analysis meant that the themes became guides for further analysis of data as the themes in turn were integrated through theorising. Such a process meant that early themes were often subsumed within this unification of ideas (Hammersley, 1989; Anderson, Standen & Noon, 2003). 4.2.2 Analysis informed by social constructionism and symbolic interactionism Social constructionism (epistemology) and symbolic interactionism (theoretical perspective) that define the researcher’s interpretive framework have been discussed in Chapter 3. Influenced by Charmaz’s social constructionist/symbolic interactionist perspective, the researcher asked during data analysis: ‘Why do (participants) think and feel and act the way they do? Under what conditions do they think and feel and act the way they do?’ and ‘What are the consequences…?’ (1990: 1165). In brief (see Chapter 3 for details), since social constructionism concerns itself with the construction of knowledge and therefore meaning through the social involvement of agents within a social context; and accepts multiple constructions of meaning are possible based on different constructions from those engaged in the social interaction, analysis relied upon member checking, constant comparison, atypical (negative) cases and investigator triangulation as part of its operational techniques (see section 4.6: Rigour in Qualitative Research). Furthermore, since symbolic interactionism holds that meaning about an object can vary, but social interaction constructs common meaning and supports qualitative research as it is understood here (again, see Chapter 3) analysis similarly relied (in part) on member checking, constant comparison and analysis of atypical (negative) cases. 4.2.3
Organising, coding, writing, theorising and reading
Data organisation is integral to the overall process of data analysis (Van der Heide, 2001). The systematic management of the data was necessary for analytical thoroughness. Logical data organisation becomes the bedrock upon which rests analysis such as coding (Miles & Huberman, 1994) and analysis such as the processes of writing, theorising and reading (Coffey & Atkinson, 1996). Understood like this, analysis began at the beginning of the study (Rice & Ezzy, 2000) and was an ‘iterative process’ of coding, writing, theorising and reading that ‘…(took) place simultaneously…’ (Higginbotham et al., 2001: 247; see Figure 4.1). Figure 4.1 Organising, coding, writing, theorising and reading
4.3
Data Organisation
4.3.1
Codes, files, computer files and tapes
Data organisation began with the management of coded files. Coded files existed as hard copy as well as files managed within Microsoft Office software. Each file represented one of the five residential aged care facilities accessed for the research project2. Codes were also created to identify the methods for data collection3. For example, the first residential aged care facility (A) group discussion (gi) with residents (r) was identified by the code: Agir. Coding was essential for efficient retrieval of computer data files and also assisted with constant comparison of data (see forthcoming section 4.5.1.5: Saturation: constant comparison). Hard copy files also existed. These files were chronologically ordered to match the order of the Negotiation of Entrée per care facility. Files were separated into three sections - resident, carer and nurse. Each section contained a list of research participants’ codes (real names held separately), consent and demographic data, personal journals and personal journal transcripts4, group discussion transcripts, interview schedule, interview transcripts5 and discussion/interview tapes6. 4.3.2
Field journal and field notes
Data analysis was commenced early in the study through the utilisation of the researcher’s field notes (Schatzman & Strauss, 1974). These notes represented a dynamic record of the ‘shaping’ and ‘summarising’ of data, a record of theorising, coding and ‘explicit decision rules’ (Van der Heide, 2001). As such, the field journal notes became a reservoir of the researcher’s memos about ‘analysis (and his) thoughts, interpretations, questions and directions for further data collection’ (Strauss & Corbin, 1998: 110)7. 4.4
Analysis: An Overview
Figure 4.2 Analysis: An overview
Figure 4.2 above, provides an overview of the analysis process that began with data organisation, the preliminary work (Tuckett, 1998a) and found completion in the write-up. The key phases of analysis – reading, coding, writing and theorising are now examined.
4.4.1
Reading: Literature review and preliminary study
Figure 4.3 Reading: Literature review and preliminary study
The research takes the shared view that a ‘first step in qualitative data analysis involves conducting a literature review’ (Rice & Ezzy, 2000: 191; Coffey & Atkinson, 1996; see Figure 4.3 above). This initial review of literature is necessary for practical reasons - the identification of a unique research question. Furthermore, this review is ongoing, in keeping with the understanding that analysis is an iterative process. Conducted in this way ‘(permits) a creative interplay among the process of data collection, literature review, and researcher introspection’ (Patton, 1990: 163). However, conducted and understood in this way may expose the research to criticism of influence (bias) and a shutting down of the researcher’s openness to emergent themes from the data. Therefore, Tuckett’s (1998a) study (see Appendix 1.0) and the a priori review of literature for the current work may be construed as influencing and potentially narrowing findings. Concerns of this kind can be countered. Some knowledge of the literature relevant to truthtelling within and beyond health care encounters ‘can enhance sensitivity to subtle nuances in data’ (Strauss & Corbin, 1998: 49)8. Additionally, the literature review and analysis of the verbatim texts is always in-progress. As was the case with this research, it was ‘impossible to know prior to the investigation what the salient problems (would) be or what theoretical concepts (would) emerge’ (Strauss & Corbin, 1998: 50). Whilst there may be ‘no need to review all of the literature in the field beforehand’, in reality this was impossible. Whilst the literature review (reading) was ongoing throughout analysis, more specifically during the write up phase, ‘the literature (was) used to confirm findings and challenge or add to the literature’ (Strauss & Corbin, 1998: 50-51). Furthermore, in response to the effect Boyatzis (1998: 13) refers to as ‘projection’ whereby potentially an established review of the literature may influence the analysis process – the researcher employed two counter strategies. Firstly, through investigator triangulation consistency in judgement about the data was established (see section 4.6.2.5: Investigator Triangulation). Secondly, raw data and researcher interpretations about these data were taken back to the research participants for their clarification and verification in the follow-up interview. 4.4.2 Reading and theorising: Auditing, transcript production and marginal remarks Figure 4.4 Reading and theorising: Auditing, transcript production and marginal remarks
Utilising the Nurse’s Story as a guide Group Discussions were conducted and audio-taped and Personal Journal entries collected. The process of Reading and Theorising at this stage of the research complemented the ‘data reduction’ and ‘conclusion drawing and verification’ (Miles & Huberman, 1994: 10-11; Boyatzis, 1998) initiated in the Field Notes.
The following describes in detail the analysis processes that occurred as part of Reading and Theorising (see Figure 4.1.2 above). Here, theorising is understood as ‘having and using ideas…Everyone can use, develop and generate ideas. In thinking about the research process, Dey (1993, p. 51) describes theory ‘simply as an idea about how other ideas can be related’ ‘ (Coffey & Atkinson, 1996: 140). 4.4.2.1 Auditing: Transcript production Audio-taped group discussions and interviews from the first aged care facility were transcribed by the researcher. This provided the researcher with an early sense of the data, an ‘appreciation of its richness...’ (Boyatzis, 1998: 11) and insight into the duration of transcription9. The researcher’s own experience (and competence) meant that the ratio for tape time to transcription time (hours) was 1:10 for the first few Group Discussions. Overall, the average time for transcribing an interview was six hours. Consequently, the remaining audio-taped group discussions and interviews were transcribed by a hired professional. All Personal Journal entries were transcribed by the researcher, on average taking no more than an hour to transcribe. The use of a hired transcriber creating the verbatim transcript meant that the researcher then audited every transcript against the original audio-tape. This auditing was considered extremely important for gaining a ‘close contact and familiarity...’ with the data and therefore, overall trustworthiness (Boyatzis, 1998: 45; see section 4.6: Rigour in Qualitative Research, for an explanation of ‘trustworthiness’). This process proved to be a lengthy, ‘systematic examination of (the transcribed texts) so as to ascertain their accuracy’ (Simpson & Weiner, 1989: 781; Pecchioni & Nussbaum, 2000)10. For the interviews the auditing time averaged one hour whilst for the group discussion the auditing time averaged six hours (for a maximum time of an audit taking thirteen hours)11. 4.4.2.2 Transcript reading and marginal remarks Following the auditing process, the corrected transcript was then carefully read several times. During the reading and re-reading, the researcher coded, made ‘marginal remarks’ (Miles & Huberman, 1994: 66) and commenced preliminary ‘memoing’ (Miles & Huberman, 1994: 72; Singh & Richards, 1999). At this stage, the transcript reading with remarks and memos represented the first attempt at coding the data. This was a process whereby ‘tags or labels’ were used to ‘(assign) units of meaning to the descriptive or inferential information’ within the verbatim text (Miles & Huberman, 1994: 56). These tags – or, ‘open codes’ (Strauss & Corbin, 1990; 63) and their corresponding remarks and memos were typically assigned to a whole sentence or paragraph. Marginal remarks refer to the writing of ideas directly onto the transcript. Whilst codes were written onto the left-hand side of the transcript page, corresponding remarks were written on the right-hand side of the page (Miles & Huberman, 1994). Remarks included ideas about ideas (theorising), instructions for the researcher when seeking clarification in the follow-up
interview, noting ‘negative cases’ (Peräkylä, 1997: 212; Miles & Huberman, 1994) and references to data within the same transcript or references to data in other transcripts. Making remarks during the transcript reading not only acted as erecting sign posts for later reflection but also reduced the tedium of coding (Miles & Huberman, 1994). An example of a typical transcript with labelled data and marginal remarks is shown below: KnowingÆ Gauging and judging
CPJ: The… I have said that in the last two days to a relative because I know that they, that’s how they want to hear it. So you have to gauge… CAH: You judge don’t you? CPJ: You have to gauge each person…
? gauge-what & how to say X- shifting, monitoring, dynamic ? judge-person, person’s nature, feeling- experience, static, stereotyping
Whilst coding and making marginal comments, the researcher continued the data reduction – conclusion/verification process through memoing. The Field Journal was the site of memo writing (previously discussed in section 3.4.5: Field Journal and field notes). All these processes – auditing, reading, coding and marginal remarks and memoing, described here as Reading and Theorising contributed to the development of the interview guide and consequently decisions about further (theoretical/purposeful) sampling. The rationales for the development of the interview guide in this way have been previously discussed (see Chapter 3: Interview) and are summarised in Appendix 3.1T: Rationale for the development of the Interview guide. Further discussion about sampling and sampling rules occurs in a forthcoming section 4.5.1: Sample framing. 4.4.3 Coding, writing and theorising Figure 4.5 Coding, writing and theorising
The process of Coding, Writing and Theorising in this research represents an extension of ‘data reduction’, and ‘conclusion drawing and verification’ and begins ‘data display’ (Miles & Huberman, 1994: 10-11; Boyatzis, 1998). The process extended the ‘theme identification’, enhanced ‘theme comparison’ and included mechanisms to promote trustworthiness (Boyatzis, 1998: 46-47; Charmaz, 1990: 1162). 4.4.3.1 Field journal and field notes The researcher’s Field Journal (field notes) was used to keep a record of coded data from the transcripts and the corresponding theoretical notes related to these data. Segments of verbatim text from each transcript were assigned codes. The code was recorded in a left-hand column on the field note’s page beside the verbatim text it related to (Observational Note). Below the data text the researcher recorded his ideas and understanding about the data (Theoretical Note). Code assignment (assigning the ‘tag’ or ‘label’) was contingent on asking of the data segment, ‘What is being described (event, action, interaction) in the data text’? and ‘How is what is being described understood (processes)-what does it mean’? ‘Why?’ For example, the researcher’s field notes (abbreviated below) evidence the following:
13th July 2001 d:9 placement lie: relatives lie to ensure relative (resident) gets a placement (care)
ON: C2: We’ve even had relatives told a lie too… TN: Carers acknowledge that resident’s relatives deceive – that is deny that their relative ‘kicks and wanders’ in order to secure a placement. However, after sometime in care, relatives admit that this (behaviour) has always been happening.
26th July 2001 d:18 ‘major lie’: care/services untruth
ON:DE:C1: …major lie..regarding services…medications or diagnosis…getting (promised) something (treatment) to benefit them and they really are not…
TN: Carer acknowledges either personal experience /knowledge (that authorities?) deceive about care that is provided, deceiving residents about medications (?placebo or some other strategy?) MN: Will determine follow-up question at interview and amongst other participants.
After the researcher had completed the ‘’first run’ at coding data’ (Rice & Ezzy, 2000: 196), all coded data were reconsidered looking for salient trends or patterns. In the review process the data were re-read with the intention of determining what relationship existed both between other and within the coded data. Consequently, coded data were linked and gradually unified, thus progressing from making the particular to the more general. For example, the field notes evidenced above were compiled and charted (Baum, 2002) with other coded data as follows (abbreviated below): Care-Care priority/best interest/residency Treatment truths d:9 placement lie: relatives lie to ensure relative (resident) gets a placement (care) . d:18 ‘major lie’: care/services untruth . d:50 continence lie: ‘white lie’ to save resident’s embarrassment – veil of benevolence
By utilising the Observational-Theoretical field notes in conjunction with the find-retrieve function of the Microsoft Office software a preliminary pattern or theme schema was developed. Furthermore, the researcher was able to transfer to each theme the initial theoretical notes that had been developing from the first moment of data collection. The result of this process of code consolidation leading to an early theme schema was the emergence of ‘data display’ (Miles & Huberman. 1994: 10) and a more cohesive drawing together of ideas about ideas and their relationship – which has previously defined theorising (Coffey & Atkinson, 1996). For example, the compiled and charted coded data (and corresponding Theoretical Notes), as shown above, were then expanded into a thematically orientated data set that brought together the research participants’ commonalities and differences (theoretical notes not shown in example below): CareVers1.doc Treatment Truths C2: We’ve even had relatives that have put their parents in here on the grounds that they have told a lie too. They said that mums, fathers not home, he doesn’t kick he doesn’t wander… But to get them into a place its… because I mean some…. ….
C1: DE: If it is a harmless lie to keep a resident from being depressed or unhappy – that is, to save an argument or any distress, then I feel that this is not really a lie as such. But I do feel that major lies told in the realm of deception (ie) regarding there services or even their medication or diagnosis of illness, or if they are advised that they are going to get something to benefit them and they really are not, them that is deception and staff (no matter what their role) should not be put in a position where they have to tell deliberate lies.
The analysis, now with an embryonic theme schema, continued with further scrutiny of the reduced data (Miles & Huberman, 1994). Both a computer file and hard copy were generated which contained for a given theme, the now integrated data segments and their assigned theoretical notes. The researcher again re-read the data set within a particular theme in order to uncover within it a more focused logic. To achieve a titration of ideas (and consistent with social constructionism) the questions in Table 4.1 below (Questioning coded data within a theme) were answered in relation to each coded data sentence or paragraph within the corresponding developing theme: Table 4.1: Questioning coded data within a theme
In answering these questions notes were again made directly onto this thematically orientated data transcript and also, corresponding notes were made into a second research journal. Therefore, typically the thematically orientated data transcript looked as follows (abbreviated below): CareVers1.doc Treatment Truths B Carer Elements: type 1/type 2
C2: We’ve even had relatives that have put their parents in here on the grounds that they have told a lie too. They said that mums, fathers not home, he doesn’t kick he doesn’t wander… so they would come and say: “Oh no Dad never hits” this and that. And then after they have been here a while it comes out: “Oh Dad used to always hit mum, and you know that’s why he is in here because we couldn’t cope at home. But they lied to get him in here… [Entry and notes continue]
Family lie about res. behaviour (do) ↓ ‘violence’ (eg) ↓ chance by family to free themselves from burden (why) ↓
So that a corresponding entry into the second research journal typically looked like the example below (abbreviated below): B
Carer
Family
Lying about res. to ensure placement
Family’s burden of care offloaded
Carer’s burden care (abuse is
type I: fam. Lie to staff type II: fam. Lie to res.
transferred)
4.4.3.2 Theme development For each developing theme, the researcher examined these particulars in an effort to make sense of the data as a cohesive narrative. Consequently, a logic or story was developed – the ‘sculpt(ing) (of) fully contoured ideas’ (Charmaz, 1990: 1168). The compiled and charted data were re-arranged within the theme into an interpretative sequence that moved between description and analytic abstraction. This process of ‘data reduction’ and ‘conclusion drawing and verification’ (Miles & Huberman, 10-11) that facilitated the generation of this level of abstraction was complemented by comparison of data within and across themes and accompanied by continuing simultaneous reading of literature. In turn, this meant that themes were refined, focused or altered (Donovan & Blake, 2000). Consequently, the early thematic or pattern schema evolved as the researcher moved between description and abstraction. Table 4.2 below shows the evolution of an early thematic schema toward a more fully developed representation of themes:
Table 4.2: Evolution of an early thematic schema becoming a more developed representation of themes Early thematic schema Priority of care Care for-care about Treatment truths Case conference confabulations
Later thematic schema Priority of care Care in their best interests Home as Residency Treatment truths Merit of truth-telling Treatment truths Untruths aiding compliance Compliance and untruths Treatment truths and communicative strategies Summary: the story
4.5
Qualitative Research Sampling
The following section discusses the qualitative sampling procedures for the current study. Whilst there are ‘no closely defined rules for sample size’ (Baum, 2002: 176; Patton, 1990) sampling in qualitative research usually relies on small numbers with the aim of studying in depth and detail (Miles & Huberman, 1994; Patton, 1990). Seeking a richness of data about a particular phenomenon, the sample is derived purposefully rather than randomly (Reed, Proctor, Murray, 1996; Mays & Pope, 1995; Ezzy, 2002)12. Additionally, for qualitative sampling, criteria typically define the process as firstly, embodied within a reasonably flexible research design, in which sampling criteria may change as the study unfolds. Secondly, participants are sought ‘serially’ (Higginbotham et al., 2001: 236) – that is, depending on who and what has come before so that ongoing sampling supports the emerging theorising (ideas about ideas). Thirdly, sampling continues until the researcher recognises no new data were forthcoming – a point of data or information redundancy (Lincoln & Guba, 1985), an ideal dependent upon some effort to seek out disconfirming or ‘negative’ cases (Baum, 2002; Miles & Huberman, 1994; Reed et al., 1996; Kuzel, 1992). The next section aims to describe in detail the sampling process for this research guided by the above criteria. 4.5.1 Sample framing
Figure 4.6 Sample framing
Sampling decisions were made and the sample framed (see Figure 4.6 above) according to the purpose of the study. Initially therefore, the organisation and research participants were selected according to the research aim and objectives (Ezzy, 2002; Reed et al., 1996). Equally, the sample decisions were guided by reference to the research interpretive framework and realistically by practicalities and logistics (Miles & Huberman, 1994). 4.5.1.1 Selection criteria: Getting started A total of five aged care organisations were initially invited to participate in the research. These were investigated and according to the sample frame criteria a single, multi-site aged care organisation was eventually selected (see Figure 4.2, above and see Chapter 1 for discussion about the organisation). Keeping in mind the ‘critical impact on (a) study’ that the ‘starting point for data collection’ has, a decision had to be made about which of the twelve aged carer facilities within the organisation would be the starting point (Reed et al., 1996: 54). At the time, the decision was made based on ‘practicality and logistics’. Practically the researcher was familiar with the first aged care facility through his professional clinical work and the site was ‘geographically accessible’ (Clavarino & Janda, 2001). Logistically, this centre had been successfully audited and accredited by the Aged Care Standards and Accreditation Agency – allowing it to receive Commonwealth Government funding for the next three (3) year period (Commonwealth Department of Health and Aging 1998, Residential care manual)13. The researcher sought advice from the Manager-Nursing and Personal Care Services who advised him of sites where additional quality assurance audits were in-progress or had been completed (name withheld, personal communication, February 29, 2000). 4.5.1.2 Selection criteria: Participants Carer providers (personal care assistants, enrolled nurses, registered nurses) were sought who had been working within a given aged care facility for at least six months and where it was known with some certainty, would be available for a follow-up interview within at least a four to six month period after the group discussion (see Chapter 3: Interview, for duration between follow-up interviews). No other criteria were enforced for initial care provider sampling. Furthermore, so as not to stifle any chance capture of a multiplicity of perspectives, carer providers such as the physiotherapist or the diversional therapists (specialist personal care assistants) were not excluded. Consideration was given to the clinical status of the elderly residents. Relying on the sample frame, the researcher knew that the selected organisation provided care for a substantial number of chronically ill, long term, aged residents. Consequently, it was from this group of residents that research
participants were sought, rather than residents that were acutely or terminally ill. Acutely ill residents were excluded to eliminate any perceived added stress to them and to minimise the chance loss of participants due to death prior to the study’s completion. Also excluded were the mentally retarded, the grossly hearing or speech impaired, those not proficient in English, short stay (respite) or those considered by the Manager-Clinical Services physically incapable or too emotionally disturbed to participate. In brief, those residents included were those with ‘adequate cognitive functioning’ (Clavarino & Janda, 2001)14.
4.5.1.3 Group discussion and homogeneity As previously described (see section 3.3.4: Negotiation of Entrée) the Administrator and/or the Manager-Clinical Care Services in consultation with the nurses (Team Leaders) in each participating nursing home, identified residents able to participate in open discussion about the meaning and understanding of truth-telling (Yates, Dewar & Fentiman, 1995). Their identification of potential research participants was framed by both the selection criteria and the research purpose. As a consequence of this involvement, some interested residents at one facility were deemed by the Administrator (researcher’s field journal record) as being ‘unable to participate in a group or write in a journal’. Similarly, the Manager-Clinical Care Services at another facility offered (researcher’s field journal record) ‘(to) speak to a few key carers to try to get some interest’ adding, ‘the type of resident you need, the numbers here would be quite small’. Furthermore, the facility care staff acted as ‘”go-betweens” (Groger & Mayberry, 1999), obtaining the residents’ consent to participate in the Information Sessions (see section 3.3.4: Negotiation of entree). Methods literature (particularly focus group literature) about the use of groups in qualitative research emphasises the requirement that the group be homogenous (Morgan, 1988). That is, members have homogenous backgrounds and ought not know each other in order to ‘(foster) contribution by more participants’ (Khan & Manderson, 1992; Thomas et al., 1992: 13). However, studies have successfully used groups comprised of members with different power, status, knowledge (and interest in the research outcome) and comprising participants known to each other (MacDougall & Baum, 1997; Kitzinger, 1994). Heterogenous group membership supports qualitative research that aims for a wide diversity of views (Kitzinger, 1994). In this research, the group composition evolved as described above, whilst adhering to Rice & Ezzy’s (2000: 79) advice to use ‘careful consideration’ and ‘common sense’. Consequently, the researcher erred on the side of practicality and took the view that any group effect would be small (Nelson & Frontezak, 1988) and compensated for through the use of the Personal Journal (MacDougall & Baum, 1997). Resident and care staff groups for discussion comprised of members that may or may not have known each other and were homogenous only in the sense that they met the selection criteria, understood the purpose of the research and were willing to share their views. Furthermore, after the experience of the first group discussion in which the membership comprised personal care assistants and a registered nurse (Team Leader) group composition was changed. In all other groups the registered nurses were separated from the other care staff (see section 3.4.3: Group discussion as a ‘focused group depth discussion’). 4.5.1.4 Interview: Purposeful (theoretical) sampling Purposeful (theoretical) sampling attempts to select research participants according to criteria determined by the research purpose but also as guided by the unfolding theorising. Purposeful (theoretical) sampling tends to be used in qualitative research (Miles & Huberman, 1994). For the sake of
clarity, in this research, purposeful sampling is recognised as having the same meaning as theoretical sampling (Higginbotham et al., 2001; Morse, 1991; Brink, 1991; Lincoln & Guba, 1985). Table 4.3 below indicates some of the sampling decisions made on the basis of emerging concepts (Strauss & Corbin, 1998) and the practical contingency that also impacted on these sample decisions.
Table 4.3: Theoretical implications and practical contingency governing sampling Rational: Theoretical Practical contingency Site Participantb implication (Rubinstein, 1994) Aa
A1r, A2r A2 ANL
B
B1r, B2r, B3r B1, B2, B3 BAN, BCT
C
C2r, C3r, C4r, C5r C1, C2, C3 CAS, CPJ, CAH
D
D1r, D2r, D3r D1, D2, D3 DJJ, DNB, DGS, DCI
Eφ
A1r: confirming:typical, A2r: ‘atypical’ re: control/role theme A2: confirming & verification: typical ANL(Team leader): verification &‘atypical’ re: role/family theme B1r, B2r, B3r: confirming & verification; B2r variance B1r, B3r: control/role theme B1, B2: confirming & verification: typical; B3(Physiotherapist): perspective BAN, BCT: confirming & verification, BAN(Nurse Manager) C2r, C5r: confirming & verification C4r, C3r: awareness theory All confirming & verification CPJ(Nurse Manager):comparison CAH(Team Leader):comparison, CAH: confirming & verification Data saturation D1, D2: confirming & verification DJJ(Nurse Manager):comparison & easing/omitting’ theme DCI(Team Leader):comparison, ‘atypical’ re: role/best interest theme DGS: confirming ‘best interest’ Data saturation Data saturation
B5:social movement B4: typical but also social movement C1r:deceased C4r:refused interview
D2r:deceased D1:social movement D3:refused interview DJJ, DNB:social movement DGS:refused interview
Interview with No follow-up interviews residents Group discussion with care staff a Heterogenous nurse/personal carer group bParticipants are ordered: resident, personal carer, nurse φNo Group discussion: residents
Therefore, research participants sought for the follow-up interview were selected purposefully (theoretically). That is, selected according to the following criteria (Ezzy, 2002; Schwandt, 1997). The participants’ data: • either confirmed in some way ideas that were emerging (typical case) (Morse, 1991) or their data offered an insight deemed to be atypical (negative case) in the context of what was being theorised (Morse, 1999) and • whether typical or atypical, required confirmation and verification (contributed to member checking)(Keith, 1994) and • could be compared with participants in other settings (contributed to constant comparison of data). At the aged care facility D, an all encompassing idea crystallised – that of understanding disclosure as ‘easing and omitting’ (telling in a particular way and telling a particular ‘what’) in the resident’s ‘best interest’ (DJJ). The views of this Nurse Manager were considered in light of who and what had come
before and the participant was sought for a follow-up interview. In this case, the Nurse Manager had left the facility and could not be located. This example represents one of the practical contingencies the researcher had to manage whilst making sampling decisions on theoretical grounds. The researcher was left to consider the congruence and complementarity (triangulation) of the participant’s data from the Personal Journal (Greene & McClintock, 1985; see section 4.6: Rigour in Qualitative research for an explanation of triangulation and see also the forthcoming section: Limits to sample, for the implications of practical contingencies when sampling). During the data collection-analysis process for D, the researcher became increasingly aware that he was reaching ‘information redundancy’ (Lincoln & Guba, 1985: 202). However, the aged care facility E was purposefully selected on the basis that the Administrator’s representative had commented (researcher’s field journal record): You’ll have to come out to us…we have a different way of thinking in the country
Accordingly, the researcher collected data at E ‘…follow(ing) (this) lead…’ – to investigate whether what went on there was critical to understanding truthtelling and unique (‘different’) (Charmaz, 1990: 1162). However, as in the case with residents at D, the researcher identified ‘sufficient and quality data’ (Morse, 1991: 135) at E in the group discussions and decided no new information would be forthcoming in follow-up interviews (see below for a discussion about saturation as a sampling rule). 4.5.1.5 Saturation: Constant comparison A clarification needs to be made about saturation per se. In this qualitative study, the underlying search ‘...is not the amount of data but rather the richness of the data, not the total counts but the detailed descriptions’ (Carey, 1995: 492)15. Unlike the quantitative approach, deliberate frequency counts were not conducted (Morse, 1995). To some degree, the claim for saturation does include an element of faith (Cutcliffe & McKenna, 2002). Hence, the final decision about sample numbers was based on evidence of data saturation (‘redundancy’) which occurred when ‘no new information of significance (was) obtained’ for ongoing thematic development and theorising (Higginbotham et al., 2001: 236; Lincoln & Guba, 1985: 202; Patton, 1990). Therefore, the decision that data saturation or data redundancy had been reached was facilitated through ‘constant comparison’ of data (Glaser & Strauss, 1967; Glaser, 1999). That is, the ‘researcher...assert(s) that they have reached saturation…grounded in the empirical confidence they have attained from repeatedly comparing data to additional data’ (Cutcliffe & McKenna, 2002; 614). Therefore, the researcher moved back and forth between the data and emerging tentative thematic identification and interpretation. In this process, the researcher ‘witness(es) reoccurring patterns and themes in the data’ (Cutcliffe & McKenna, 2002; 614). Consequently, this constant comparison of data was contingent upon concurrent data analysis and collection (Rose & Webb, 1998). Examples of research strategies for the constant comparison of data to facilitate decisions about data saturation and ongoing sampling (Keith, 1994) included the interview process (see Chapter 3: Interview)16, keeping of a
thematic log during the group discussion and interview, writing marginal remarks during transcript reading, keeping detailed field journal notes and the ongoing reading of literature. These strategies allowed, for example, ‘comparing …some topic such as an experience, issue…relationship (or context) and juxtaposing data from each person against each other one’ (Charmaz, 1990: 1168).
4.5.1.6 Sample characteristics At the conclusion of each Group Discussion, demographic data were self reported on the Demographic Information Sheet (see Appendix 3). The overall sample numbers of participants in each facility is shown in the Table 4.4 below. A comprehensive tabulation of demographics for residents, personal carers and registered nurses appears in Appendices 3.2 - 3.4. Table 4.4: Total sample size Participants Î Resident Locale È A B C D E Total sample per group a
6 3 5 3 2 19
Personal Carer 7a 5 3 3 5 23
Nurse 1a 3 3 4 4 15
Total sample per site 14 11 11 10 11 Total sample of participants 57
Heterogenous nurse/personal carer group
Generally, in this study, residents’ ages ranged from 61-97 years (average 80.5 years, reported). Of the nineteen (19) residents who participated, fifteen (15) were female and four (4) were male. The resident sample had been in residence within the organisation for between one (1) month and four (4) years. Most were placed into care due to altered mobility secondary to a stroke (cerebrovascular accident), Parkinson’s disease or osteoarthritis. One resident had emphysema and continuous nasal oxygen insitu. As a consequence of their altered mobility or gaseous exchange, the residents required either full or (mostly) partial assistance with the activities associated with daily living. Carers’ ages ranged from twenty-one (21) years to fifty-six (56) years (average 42 years, reported). The entire carer group was female. The carer sample had a range of caring/nursing years experience from one (1) year of to thirty-seven (37) years experience. This group had all completed some level of secondary education (as reported) and a few had completed tertiary studies and/or advanced certificates. Of the nineteen (19) Personal Care Assistants who identified themselves as such, ten (10) reported to be at Level 3 or more. Overall, the group comprised mostly of Personal Care Assistants (PCA) although one group member was working as a Diversional Therapist and two participants were working as Enrolled Nurses (EN). In this sample there was also a Physiotherapist. Finally, the nurses’ (Registered Nurses) ages ranged from thirty-eight (38) years to fifty-six (56) years (average 46.7 years, reported). All but one Registered Nurse was female. The nurse sample had a range of caring/nursing years experience from thirty-eight (38) years to five (5) years of experience. Of those who reported, nearly half had a tertiary level of education and qualifications other than a bachelor degree. Of the fifteen (15) nurses, three (3) were Manager-Clinical Care Services, and eight (8) identified themselves as a Registered Nurse, Level 6 or above.
4.5.2
Limits to sample
As stated earlier, purposeful (theoretical) sampling attempts to select research participants according to criteria determined by the research purpose but also as guided by the unfolding theorising. In reality, a number of issues arose that potentially undermined the essence of purposeful (theoretical) sampling, namely, ‘gatekeeper bias’, ‘sample frame bias’ and practicality and logistics (Groger & Mayberry, 1999). 4.5.2.1 Gatekeeper bias Various levels of the nursing staff at each aged care facility took a role in the initial choice of residents and care staff to be sampled. That is, either the Administrator, Manager-Clinical Care Services or the Registered Nurse (Team Leader) or combinations of these three consulted amongst themselves and potential participants, thereby having control of sampling. As such, they acted as gatekeepers to the facility (Groger & Mayberry, 1999; Yates et al., 1995). 4.5.2.2 Sample frame bias The sample was framed according to the purpose of the study. Consequently, those sampled were carers (personal care assistants, enrolled nurses and registered nurses) and the residents. In a sense, this sample frame bias, with its focus on the resident-carer dyad, restricted sampling of other individuals who are involved in the care relationship, namely, the resident’s family and doctor (also restricted due to finite research resources).
4.5.2.3 Practicality and logistics A number of practical and logistical issues biased the sampling outcome. The researcher undertook fieldwork part-time and therefore ‘competing demands sometimes interfered with the most expeditious recruiting (and analysis) efforts’ (Groger & Mayberry, 1999). Negotiation of entrée delays due to the Accreditation process (previously discussed) in a climate of finite research time meant that sampling decisions were tempered by practicalities. In the case of the failed Negotiation of entrée (see Chapter 3), the researcher reflected on the claimed data saturation, having failed to secure access to a facility. That is, the researcher asked: ‘”What if?” but ‘equally…postulate(d) that (it) may not have altered the picture at all’ (Groger & Mayberry, 1999). Additionally, purposeful (theoretical) sampling was influenced by: • residents’ death – a C and D resident participant died, • the participants’ right to withdraw from the research – a D nurse and carer withdrew ‘due to other commitments’ and at C, a resident was ‘too upset’ to continue and • ‘social movement’ (Schatzman & Strauss, 1973: 75), the geographical movement of participants away from the original aged care facility. Two personal carers at B changed their work status and could not be contacted and failed to reply to the researcher’s written requests; at D, two nurses moved to another employer (one abroad) and a personal carer left. In these latter cases, no forwarding addresses were available to the researcher. 4.5.2.4 Counter to sample limitations The issue of limitations to the research as a consequence of sample bias was countered by the use of a number of research strategies. One of these strategies included the use of different methods of collecting data. The researcher was then able to consider each participant’s datas’ congruence and complementarity (triangulation) with the data from the participant’s Personal Journal (Greene & McClintock, 1985) and/or as it compared across other data (constant comparison and member checking) and/or as it resonated with any atypical (negative) case. The forthcoming section discusses in detail these and other research strategies and operational techniques that were employed in an effort to enhance the rigour of this qualitative research. 4.6
Rigour in Qualitative Research
The language that describes, and the meanings attached to the terminology for establishing and assessing rigour in qualitative research vary from that of traditional positivist studies. The criteria for rigour, that is, the ‘goodness criteria’ (Miles & Huberman, 1994: 277) or ‘trustworthiness’ criteria (Lincoln & Guba, 1985: 289,300) for qualitative studies ‘parallel’ the traditional terms (Schwandt, 1997; Guba & Lincoln, 1989: 233). The trustworthiness criteria17 espoused by Lincoln & Guba (1985) stem from their work that has as its underlying epistemology, constructivism (emphasis added). The criteria are considered consistent with the epistemology associated with this work, constructionism, since both epistemologies hold
…an interactional view of human behaviour and a connectedness between the individual and the social environment…there is no single reality, but many possible ways to understand behaviours, interactions or events…that structures (cognitive or social) that exist beyond oneself cannot be completely objectively known due to the nature of language and social process (Rodwell, 1998: 19).
Drawing from the literature, Table 4.5 below shows the association of terms and the research strategies and techniques that were employed in this research to promote rigourous qualitative research. Table 4.5: Criteria for rigour and the ‘parallel’ terms Rigour Trustworthiness Evaluation Criteria for 1 Criteria Criteria Rigour2, 3
Research Strategy
Internal validity
Credibility
Credibility
Truth value
Field/personal journal Tape recorder Thematic Log Auditing transcript
External validity
Transferability
Fittingness
Applicability
Data display Simultaneous literature review
Reliability
Dependability
Auditability
Consistency
Objectivity
Confirmability
Confirmability
Neutrality
Field journal Tape recorder Thematic log Auditing transcript Nurse’s story Field journal
Operational Technique4 Atypical (negative) case Member Checking Purposeful (theoretical) sampling Constant comparison Triangulation Audit trail Purposeful (theoretical) sampling ‘Thick’ description Atypical (negative) case Triangulation Peer review Audit trail Audit trail
1
Guba & Lincoln (1989:233-243); Lincoln & Guba (1985:289, 300) 2Guba & Lincoln (1981:103127) 3Sandelowski (1986:29-34) 4Lincoln & Guba (1985:219).
The operational techniques of purposeful (theoretical) sampling and constant comparison have been previously discussed in this chapter. Purposeful (theoretical) sampling contributes to credibility (Roberts & Burke, 1989; Brink, 1991) because participants were sought on the grounds that they were likely to have and share their understanding of truth-telling. Additionally, transferability is facilitated because sampling aimed to include ‘...the widest possible range of information for inclusion in the thick description’ (Lincoln & Guba, 1985: 316; for an explanation of ‘thick description’ see forthcoming section 4.6.2: Operational Techniques). Furthermore, constant comparison of data added to credibility (Ambert, Adler, Adler & Detzner, 1995; Brink, 1991) since the research strategies employed contributed to data accuracy.
4.6.1
Research strategy
4.6.1.1 Researcher as instrument The credibility of the research resides in part in the skill and competence of the researcher (Angen, 2000). Sandelowski (2002) argues that where interviewing defines the qualitative research endeavour, formal training is required. Adding to the commentary in Chapter 3 (see section3.4.3.2: The researcher as group facilitator), the researcher has served some ‘...period of apprenticeship...’ that involves experience • with group and solo interview method in Tuckett (1998a) (Angen, 2000). • in facilitating small and large group discussions amongst pre- and post graduate students focusing on general health care issues and ethics. • in interviewing clients for admission into hospital, namely acute adult, geriatric and emergency paediatric, and • in mentoring undergraduate students in aged care clinical practicums (see Chapter 1). 4.6.1.2 Field and personal journal Field notes ‘contributed to...(credibility and dependability)...because they are both analytical in themselves and because they contain immediate and later perceptions and thoughts about the (participants)’ (Rose & Webb, 1998: 560; see previous discussion this chapter and section 3.4.5: Field Journal and field notes). As such, the field notes were the site for the employment of those strategies that facilitated the constant comparison of data (contributing specifically to credibility). Additionally, the Field Journal became another ‘data source’ and contributed to credibility and dependability in the context of data triangulation (to be discussed below) (Higginbotham et al., 2001: 247; Rice & Ezzy, 2000). Furthermore, the field notes exist as a record of coding, writing and theorising that can be made available for auditing (see the final section of this chapter, Summary: Audit trail). Finally, the researcher utilised the notes for self-reflexion about the research process (Koch, 1994). In the context of contributing to trustworthiness, the Personal Journal assisted in reducing two potential influences on credible data. Firstly, the potential threat by the tape-recorder18, to credibility (validity), was diminished through the use of the Personal Journal as it gave participants an opportunity to write down their understandings and meaning about truth-telling before (or after) the group discussion. Secondly, the Personal Journal reduced ‘groupthink’ (MacDougall & Baum, 1997: 533), or ‘bandwagon’ effect (Carey, 1995: 490) in which participants ‘acquies(ce) to the majority view (and) are unwilling to dissent and therefore remain quiet...’(Sim, 1998). The potential threat to credibility by groupthink was tempered by providing participants the opportunity to write down their impressions, views and understandings before the group discussion began. 4.6.1.3 Nurse’s story as guide The utilisation of the four (4) ‘stories’ provided an element of homogeneity for the group interview and personal journal. In this way, the story as the stimulus, increased the ‘...consistency of judgement (about) the raw information by increasing (to some extent) the consistency of setting...’ in
which the data were collected (Boyatzis, 1998: 147; Goodwin & Goodwin, 1984; see previous discussion in section 3.4.2.3: Nurse’s Story as guide). 4.6.1.4 Tape recorder, thematic log and auditing transcripts The tape-recording aimed to counter criticism of qualitative research as ‘prone to systematic bias’ (May, 1991: 198). The recording of the interview facilitated credibility & dependability of the data collection procedure (Peräkylä, 1998). Furthermore, whilst recording, keeping a thematic log during the group discussion and follow-up interview as part of the field notes added to overall accuracy or ‘authenticity’ (Cutcliffe & McKenna, 1999) or ‘truth value’ (Ericksen & Henderson, 1992: 1203, Miles & Huberman, 1994: 278). That is, immediate notation of themes promoted capturing ideas that were credible to the participants. Auditing transcripts aimed to ensure accuracy. Also, it was noted that making remarks during the transcript auditing not only acted as sign posts for later reflection but also reduced the tedium of coding (Miles & Huberman, 1994). – therefore ‘help(ed) prevent or lessen errors and distractions related to the researcher’s mood and style’ (Boyatzis, 1998: 16; see previous discussion this chapter) 4.6.2
Operational Techniques
4.6.2.1 Atypical (negative) case Following-up the atypical experience (Morse, 1991) or the ‘deviant case’ (Peräkylä, 1997: 210) challenged the adequacy of insights and in turn challenged the researcher to formulate more credible (Baum, 2002; Brink, 1991; Denzin, 1989)19 and dependable conclusions (Brink, 1991). Rather than discount those participants deemed outside the general, the atypical (negative) case was analysed to ‘…give impetus, strength and rigour to the development of the analytic argument’ (Peräkylä, 1997: 212). For example, ANL represented an atypical case. Nurse ANL’s understanding about truth-telling was embedded in her role as a nurse (Team Leader) but also as a daughter (resident’s family member). This reality existed since one of the residents in her care was her own mother. Rather than set her views aside as different, she was purposefully followed up in an interview because she gave the researcher an insight into the consequences of this dual role/relationship and its impact on her understandings. 4.6.2.2 Member checking Many writers define a process of meaning confirmation or disconfirmation as ‘sending it back’ to the participants to ensure that what was understood was credible (Baum, 2002; Ambert et al., 1995; Guba & Lincoln, 1989; Ramos, 1989; Kvale, 1983). However, not all agree that ‘member checking’ (Forrest, 1989: 817) or ‘respondent validation’ serves a useful purpose (Angen, 2000; Morse, 1991; Sandelowski, 2002)20. In response and in this study, the researcher took the view that the participants needed to recognise something of themselves and their world in the theorising if any claim for credibility could be made. Furthermore, reading Morse closely, member checking ‘as an indicator of validity is nonsense’
when invoked at the end of the study. ‘...(R)ather the content (is) verified step by step, piece by piece, during the research process’ (Morse, 1991: 444). An example of member checking occurred at a follow-up interview after initial coding, writing and theorising after the group discussion. The following exchange involves DCI (incomplete exemplar): AT: Let me just run past you three statements I want you to critique DCI: Yes AT: …There may be events or behaviours that the family are not told about (because of the) assessment that this will cause upset to the family…family has no control and the event or behaviour does not alter the overall resident’s planned care DCI: I agree with that…its sort of a need to know basis……yes, I think we would omit it.
Member checking allowed the researcher to not just ‘play back’ what the research participant had said, but to clarify and ‘interpret the significance of their self understanding in ways the participant may not have been able to see’ (Grant & Giddings, 2002: 16). 4.6.2.3 Triangulation: Method (ological) and investigator Triangulation has widespread support as an operational technique for enhancing credibility (Ambert et al., 1995; Baum, 2002; Lincoln & Guba, 1985; Willms & Johnson, 1993) and dependability (Baum, 2002; Boyatzis, 1998; Denzin, 1989; Goodwin & Goodwin, 1984; Miles & Huberman, 1994). Triangulation is understood as ‘...involving varieties of data, investigators, and theories, as well as methodologies...’ in the investigation of the same phenomenon (Denzin, 1989: 237). In this definition and attendant explanation, ‘methodologies’ actually refers to methods (Bednarz, 1983: 38 cited in Greene & McClintock, 1985). The rationale for triangulation is an attempt to overcome any inherent weakness or bias of a single research strategy. Trustworthiness in this qualitative research is premised on two types of triangulation – ‘method(ological)’ and ‘investigator’ (Denzin, 1989: 239). 4.6.2.4 Method(ological) triangulation Methodological triangulation refers to combining dissimilar techniques for data collection about the same phenomenon. Specifically, ‘between-method’ or ‘cross-method’ triangulation was utilised whereby different data collection methods such as the personal journal, the group discussion, the interview and the researcher’s field journal were used to collect data about truth-telling (Denzin, 1989: 239; Willms & Johnson, 1993: 6). Consequently, any weaknesses, for example, in the group discussion (groupthink) or interview (perceived absence of anonymity) were countered by the personal journal. A caveat is required to balance the proposition that methodological triangulation promotes credibility (Miles & Huberman, 1994). This type of triangulation aims to enhance the credibility of overall findings through ‘congruence and/or complementarity’ of the data from each method. That is, the researcher dwelled on data to find ‘similarity, consistency or congruence of results’ and seeking ‘one set of (data) enriching, expanding upon, clarifying or illustrating the other’ (Greene & McClintock, 1985: 524). The researcher noted in his field notes as an example of congruence:
July 27 2001: Thematic congruence:1. Emergence from interviews and journal agree.2.emergence and congruence from different carer groups ie PCA ←→ RN 3.emergence and congruence from across care locales
Later, as an example of complementarity: September 17 2001: Credibility & (triangulation/dependability): different carer(s) perceive X about other carer(s) Y and carer(s) Y describe own perception as X. ie carer describes the action, event, understanding of the nurse and the nurse spontaneously expresses consistency (same-same)
Method(ological) triangulation is evidenced throughout Chapters 5, 6 and 7. 4.6.2.5 Investigator triangulation Investigator triangulation utilises multiple observers as opposed to a single observer (Denzin, 1989). Triangulation in this research extends to triangulating analysts (Patton, 1990; Denzin, 1989). That is, utilising a ‘second’ investigator to analyse some of the data and compare findings. In this study, the thesis supervisor became the second investigator. As with the caveat for method(ological) triangulation, some clarification is required of the proposition that investigator triangulation promotes dependability (Miles & Huberman 1994; Denzin, 1989). During those occasions in which the principal researcher (Tuckett) and his research supervisor independently analysed the same qualitative data and then compared findings, the ‘intent (was) not to build consensual (understanding, per se, but rather the) seeking (of) multiple meanings’ to add breadth and depth to the analysis (Denzin, 1989: 245). The process of triangulating analysts occurred on three occasions. In each case, the principal researcher and his research supervisor independently reviewed an audited transcript. Consistent with the prior discussion about analysis, ‘marginal notes (were) also ... made on (the) transcripts’ by the second investigator (Miles & Huberman, 1994: 67). The two researchers then met for a discussion about their respective conclusions. As part of this meeting, the principal researcher (Tuckett) recorded the congruence and/or complementarity of the triangulation process in his field journal (for evidence of this process see Appendix 3.5T). The second investigator’s original written comments, themes, questions and theorising remain on file. Three Group Discussion interviews were chosen - the group discussion for personal carers at A, the residents at C and the nurses at D. The rationale for selecting these three was: (a) A represented the first group interview of personal carers, evidenced the case for separating nurses and carers and contained an interesting atypical case. (b) C represented an early resident group and was the source for the emerging ideas about ‘awareness’ (‘Don’t Tell Mum’). (c) D represented a later nurses, group and was the source for the idea about ‘easing and omitting’ in the residents’ ‘best interests’, and evidenced congruence with ‘Don’t Tell Mum’. The use of a co-investigator for improving trustworthiness in this research was arguably used in its ‘simplest form’ whereby the ‘two observers
(investigators) discussed each observation until agreement (understanding) was reached’ (Boyatzis, 1998: 150)21. 4.6.2.6 Thick description ‘Thick description’ is proposed as advancing the claim for transferabiltiy of a qualitative study (Miles & Huberman, 1994: 279; Lincoln & Guba, 1985: 241). In order to determine what thickness adequately describes, for the purpose of transferability, this later term needs some commentary. There is some agreement that ‘the burden of proof for claimed transferability is on the receiver (consumer)’ (Guba & Lincoin, 1989: 241) of the research. To this end, the consumer, not the researcher, ‘does the generalisation…it is up to the consumer to decide what aspects of the case apply in new contexts’ (Wehlage, 1981: 216 cited in Peshkin, 1993:26, italics added). What is to be transferable is the knowledge that emanates from the study (Morse, 1999). For the knowledge to be generalisable, the ‘thick’ description will include the research setting and information about participants as well as in-context data and credible interpretation. 4.6.2.7 Peer review Peer review, as a ‘type of investigator triangulation’ (Van der Heide, 2001) involved the use of an ‘objective other’. This reviewer was identified as appropriate premised on the following credentials: • Previous professional experience as the Director Human Resources for State Education in Queensland (Australia) and therefore considered knowledgeable about communication in organisations. • Experience with overseeing, conducting and implementing research in education and most currently for Volunteering Queensland. • Previous peer reviewer of Tuckett (1998a). • Currently Volunteer Manager for Volunteering Queensland. • Currently, attending three times a week to his 98year old father who is a resident at a nursing home operated by a different organisation than the one used in this research. The reviewer read and critiqued all chapters. Meticulous reading of and marginal notes in Chapters 5, 6 and 7 contributed to additional reflection by the researcher on both process and content. Overall, of significance, the reviewer concluded that the work was ‘comparable to (his) current nursing home experience’ with his father and the reviewer found the work ‘interesting’ whereby he was ‘associating with it the whole time’. 4.7
Summary: Audit Trail
Auditing by following the researcher’s decision trail is generally acknowledged as a mechanism for facilitating a ‘third party examiner to attest to the use of dependable procedures and the generation of confirmable findings’ (Schwandt, 1997: 6; Clarke & Wheeler, 1992; Erickson & Henderson, 1992; Miles & Huberman, 1994). The audit trail is an organised collection of materials and decisions that when reviewed and followed, allows another researcher to arrive at ‘comparable (and not contradictory) conclusions...’ (Ericksen & Hendersen, 1992: 1203). Arrival at comparable conclusions attests to the research data and interpretations being not merely fragments of the principal researcher’s imagination (ie. confirmable). To summarise this
chapter, the following Table 4.6 represents an audit of the research: Truthtelling in aged care-a qualitative study. Table 4.6: Audit of the research: Truth-telling in aged care - a qualitative study Higginbotham et al. (2001) Schwandt (1997) Current research Data generated in research Chapter 5,6,7 & On file Personal notes Chapter 3, 4 & Field notes Purpose of research Chapter 1 Rationale for Qualitative Chapter 1 & Chapter 3 approach Outline of interpretive Statement of theoretical Chapter 3 & integrated framework framework throughout Chapter 4 Evidence of understanding Chapter 1, Chapter 3 & ethical implications of Appendix 2.1T research Sample frame quality Chapter 4 & Appendices 3.23.4 Information about data Description of procedures to Chapter 3 & Chapter 4 collection procedures generate and analyse data Copies of instrument used to Chapter 3 & Appendix 2.6 guide data generation Procedure for keeping data Chapter 4 & On file organised and retrievable Trustworthiness threats Chapter 3 & 4 addressed Clearly explained relationship Statement of findings or Chapters 1, 5, 6, 7 & 8 between question, data & conclusion of investigation conclusion Explanation of concepts, Chapter 1, 5, 6, 7 & 8 models…that were developed as part of the effort to make sense of data
This chapter detailed the mechanisms for data management and processes for data analysis. It justified thematic analysis informed by procedural elements characteristic of grounded theory and established the connection between the interpretive framework and analysis. The following three chapters (Chapters 5, 6 and 7) represent the three (3) findings chapters each with a preceding discussion. Each chapter evidences and examines one of the three core themes: Relationship (Chapter 5), Role (Chapter 6) and Residency (Chapter 7) in the context of truth-telling in practice.
CHAPTER 5 FINDINGS: RELATIONSHIP
Figure 5.1: Relationship
CHAPTER 5 FINDINGS: RELATIONSHIP
5.1
Introduction: Findings and Discussion
There are three (3) findings chapters each with preceding discussion. Each chapter is dedicated to one of the three core themes: Relationship (Chapter 5), Role (Chapter 6) and Residency (Chapter 7). Residents’ data and discussion has been presented alongside the care providers’ data and discussion. Resident data display and discussion about those data brings closure to each theme and/or sub-theme. A summary of the discussion with relevant supportive literature is presented in Chapter 8. Figure 5.1 displays the core themes and Table 5.1, the corresponding sub-themes for this Chapter 5: Relationship: Table 5.1: Relationship and sub-themes Chapter 5
Core Theme Sub-theme The family
Knowing and Truth-telling(a)
Care in their best interest Trusting relationship(a)
Hope(a) Guilt time-denial time
Limited knowing(a) (a)
Theme with accompanying residents’ data
Relationship The nurse as a special family figure Dual role: being nurse and family Carers as resident’s parents Carer as family’s friend Relationship with a stranger Temporal knowing Experiential knowing Identity (Who is known?) Labelling the resident Infantile resident The contradiction of infantalisation Knowing (relational) ethic The priority of care Pander other’s priority ‘Other’ as a priority Resident’s trust Resident’s know who to trust Family’s trust Trust as a belief Truth-telling and hope Hope-real and false Hope, lies, denial Guilt, denial and reality Truth-telling and guilt-denial Consequence of truth-telling and guilt-denial Managing disclosure and guilt Vagaries of knowing the family and resident We don’t know them Getting it right-sometimes wrong
The link between truth-telling and the nature of the care provider-care receiver relationship is that both carers and nurses in this study premise their understanding of truth disclosure on knowing the resident’s (and resident’s family’s) capacity for coping with the truth and therefore catering for the resident’s or family’s best interests. The breadth and depth of this knowing and how the relationship is described determines what care providers will or will not tell. That is, the perceptions both carers and nurses have about the relationship – how they describe themselves as ‘family like’, ‘friend’ and ‘stranger’ has implications for the way disclosure operates and is described. However, how the care provider perceives the relationship with the resident or resident’s family cannot be cleanly separated from an understanding of what is done (role) that emerges within the care context (residency). This is evidenced within the data and is articulated succinctly by C2: C2: (ii): I just feel that some of the relatives seem to have a relationship with the PCs (personal carer) that they don’t have with the RNs (registered nurse). The RNs give tablets and speak to them on the telephone but the RNs aren’t doing the hands-on nursing of their mother … I’ve always thought that the RN's don’t 100% connect with the resident because that’s their job – they’ve got paperwork, they’ve got tablets. But we’re with them eight hours a day and we shower them and they do tell you what’s wrong and that.
5.2
Relationship: The Family
Personal carers articulated the view that they engaged with the resident and in cases, the resident’s family in a family relationship: AT : How do you come to that realisation about whether or not someone can handle the emotion (associated with truth-telling)? D1: You’ve got to know the resident D2:…They are our extended family daily. You know them. You tune in, you just tune into them and when you look at them its like you would talk to your own Grandpa, Grandma …
In her journal, the carer above wrote: D2: DE: The residents in this home is like your extended family. You spend a lot of time with them. You get to know their life history…
And amongst the E carers, in their group discussion, E2 agreed as did Sta1, saying: E2: With the residents and families we are all part of an extended family. Sta1: (ii) : You know them, you’re with them day to day, you get to know them very well. I always say that they’re mixed in with family….I get to love them as my extended family. So when you think about how you get to know your Aunties and Uncles …it just naturally comes to you whether you say one thing or another.
Herein, knowing the resident extends to accepting the resident as a carer’s family member. Similarly, the carer D3 in the group stated that ‘…we are classed as family by some of the residents…’. Additionally, the ‘family like’ nature of the relationship is fostered by the institutional practice of staff remaining in ward areas rather than rotating them through out the aged care facility: C3: And since we have done that and not got round our whole centre, since we have done that we do have a good relationship, but sometimes we have special ones with our residents and the relatives. And it’s like more family like.
Elsewhere, at the C residential aged care facility, in response to the researcher’s asking how the nurses ‘gauge’ or ‘judge’ when the disclosure or non-disclosure about a resident’s death and dying to a family member, is timely, a nurse replied: CAS: It’s the relationship that you build up because you almost become part of their family.
5.2.1
The Nurse as a special family figure CAH: (T)here is some relatives (family) that you would really bond with through their relative that’s in care… and they will go out of their way to ask for you so then you can sit and talk with these people and then you don’t enter lying business, I don’t think…
Adding clarity, the nurse added: CAH: (ii): (I)f that does happen you’re very lucky when that does happen. It doesn’t happen with everyone, and you really get to know those people especially in a place like this in aged care…
The original C group discussion continued: CPJ: No… CAH: …because they are asking probably the same questions they might ask within the family… um, but you become a special figure in their family as well and that’s where all your gauging aspect comes out….
Furthermore: CAH: …I mean, you become a figure that the family can trust…
And, amongst carers at D, D3: We become very close with both the resident and the family. The family that cares a lot for their elderly person that they put in often… D1: …bonds with us…so we become like part of the family…They do, they do.
Relationships with the resident’s relatives are formed over time, originating from similar, past experience and then ‘what is said’, ‘how they react’, ‘their expectations’.
The relationship development produces a ‘special’ type, a ‘real bond’. The relatives engage at a ‘personal level’ going ‘out of their way’ to seek counsel with the care provider as a ‘special’ family figure. At this level of involvement, ‘gauging’ is understood. The carer dwells on ‘what to say’ (omitting) and ‘how to say it’ (easing). Concepts such as easing, omitting and gauging are examined and justified later in the data. 5.2.2
Dual roles: Being nurse and family
Of interest to this research was a care provider (nurse, team leader) that was also family (daughter) to a resident in care (nurse’s mother). In this case, the understanding emerged: ANL: That happened to me..last week: ‘Oh don’t tell Mum, I’ll be coming up to get her…oh, but don’t tell ‘er, don’t tell ‘er.. AT: Right ANL: And I said look, I know how she’ll react. They need time…Let me prepare her …I’ll talk to me guys (personal carers) as I call ‘em. They’ll go around and keep telling her, reassuring her that it’s OK so that when you get up there to pick her up she’ll be fine…
The nurse’s role perception facilitates her overriding the family’s request, ‘Don’t Tell..’ her. (For further data and analysis about this request ‘Don’t Tell Mum’ see: Role) . The nurse ‘prepares’ the resident for an event the family does not want to be disclosed. In this case the nurse’s view is that family protection of the resident is trumped by carers’ easing the resident toward the event. A2: But in some case that’s not what I do.. AT: What was the family’s concern do you think? ANL: Oh, “don’t worry her” “don’t worry her”, like you know.. …
A personal carer concedes and exhibits a consistency with other personal care providers through out the study, in that she does not necessarily override the request of the family. The nurse understands just like other care providers that the family’s justification for the non-disclosure is the protection of the resident, to avoid ‘worry’. The nurse continued: ANL:.. There is something you’ve got to understand. My Mums here, but you just get ‘em for a short time but we’ve had ‘em for our lives’. That’s why you must listen to family. I don’t care what you say even if they tell bad things or good things ah,..
The nurse’s response is indicative of one who knows best for – knows the best interest of the resident. However, this nurse reveals she is also ‘family’ for a resident. In this role-as-family, the nurse places emphasis on ‘listening’ to the family
members who know the resident best because of the resident-family type of relationship. The nurse (team leader) concluded: ANL: Well that’s what you say just…. on the residents, that’s getting back to what I just said, sometimes you go against the family. Sometimes you don’t, you have to..
The nurse challenges the perception that the duration of the carer/nurse-resident relationship is sufficient for carers or nurses to know the resident by comparison to the life-time that family have known the resident. This nurse (team leader) contributed a caveat: ANL: (ii): We (care providers) don’t own them (residents). These people (residents) before they came here, they had a life, they had their own family and we can’t take the role of their family. They’re (family) here, but they’re not here all the time….we give support..and be there for their family and remind them too that they do have family and that we don’t own them (resident). Nobody has a right to own nobody.
5.2.3
Carers as resident’s parents
Alternatively, within the understanding of ‘resident as family’, carers articulate a view which describes the carer-resident relationship as parental. In a group discussion amongst A carers, the understanding was that: A8: If you know that person, if you’ve been with that person 6 months or 12 months or whatever you know what they can handle or what they can’t..
The carers consider themselves capable of assessing what information a resident can cope with in the resident’s best interest based on the carers insight gained over time. Later in the group discussion, the researcher asked for clarification: AT: …I want to explore with you..(A8) said something about “If you’ve been with the person a few months” and it depends “on the relationship” …is that what you said? … A7:..(Y)ou get to know the residents as family so you know what they can handle.. what they like what they dislike their moods anything so you know them.. A2: They become like your own children, don’t they? Group: Yeah. A2: You know them as well as you know your own children. A3: Well if something happens…her husband had died… if one of our resident’s husbands died, or something, you know, we would probably decide to tell her or not to tell..or say to the family “Well I don’t think it’s a good idea” or “Do you think it’s a good idea?” and then we would on that assumption if she asked us where Dad was, then we could either tell her the truth or tell her a story.. A2: Judge the situation..
Personal carers recognise the resident-carer relationship in a manner previously described, the ‘resident-as-family’, but add to this understanding the perception that
the resident is ‘like your own child..’. The care relationship so conceived, evolves as an adult carer (a parent) engaging with a child (the resident) taken into the adult carer’s family’s care. The metaphor of adoption emerged when the nurse manager at D suggested: DPJ: (ii): …I think that a lot of the carers become part of the family of the resident They adopt them if you like…
Within the A group, a carer added an alternative perspective: A6: … at the end of the day we’re here to look after them. You look after them like you look after your own parents. What hurts them hurts you, so if you don’t think they could stand that kind of blow you cushion it..
Again, the relationship so conceived recognises the adult carer ‘look(ing) after (the resident)’ as an older parent. This draws the relationship as like an adult child caring for an older parent. In a follow-up interview, a nurse (Team Leader) who was also caring for her own mother as a resident within the nurse’s care suggested: ANL: (ii): They (residents) become so dependent upon you, more than their own family and that’s why I say with carers and that you want to be careful because they (personal carers) take ownership and become quite possessive.
5.2.4
Carer as family’s friend
In addition to the ‘family’ metaphor, the relationship was also described as ‘friendly’ that is, the personal carer becoming the resident’s family’s friend: C2: That’s when (dying) you find the relatives do ask you on a personal level, you know: “What do you think is going on”? C3: And we get friendly with a lot of the relatives. C2: And that makes it very hard, because you really want to tell them the truth. Say “Look you know I don’t think your Mum is going to be here tomorrow”, or… … C2: I tell the ones that I know, I mean we are not supposed to, but you do.
Carers establish a friendship with the resident’s family. The friendship develops – ‘…you think you know them…’, over the time that the resident’s family are involved with the resident in care. The carers recognise that the knowing-as-friend relationship with the resident’s family provides the carer with a tension between feelings for a friend and their role expectation. 5.2.5
Relationship with a stranger
However, whilst the relationship that carers develop, over time is described as ‘family like’, they reveal that this ‘special’ relationship is not necessarily universal. In contrast: D1: DE: We carers/nurses care for the Resident, when we in actual fact we know very little of their past lives and experiences. They are perfect strangers.
The ‘resident as stranger’ stands in contrast to the ‘resident as family’ and the ‘carer as family’. The resident as stranger concept was highlighted in a discussion the researcher had with a care facility Administrator. The researcher’s field journal noted: We hear things at their funerals, in the Eulogy, and think – if only we had known that or if only they had told us that we could better understand the person in caring…
The familial relationship – carer as part of the family – is not universal. The carers begin the relationship as an outsider , an unattached other (objective carer) with a strong sense of role limits. Over time, provided there is some frequency of visitation by the family, the resident’s family takes the personal carer into the family. The personal carer becomes an insider, an attached subject (subjective carer). When the personal carer recognises themselves as within resident’s family they are prepared to breach the communicative role limit. (For further development and discussion of the personal carer’s communicative role limit see section: Role). The carer’s role is understood to be to attend to the care tasks (do their duty) whilst, in some cases, held at a distance by some family. The researcher pursued the issue with a personal carer in a follow-up interview: AT: (ii): (In the group) there was a general view that the carers are not as close or not as interested in engaging with the family..Rather they focussed primarily on the resident. A2: Some carers..like to keep their distance, so therefore for them to be put into a situation of truth-telling, they distance themselves from it… AT: So, they are not setting themselves up for speaking often with the relatives? A2: No, they see them (family) coming and will go somewhere else just not to cross their path even.
Within the data exists a divide. On one side of the divide, the resident is understood as ‘not our family’ and the personal carer ‘is not blood’ (D1). Care providers perceive there are limits to knowing the family’s history. On the other side of the divide, carer providers recognise themselves as ‘part of (resident’s) family’, as being ‘classed as family’ by resident with a ‘bonding’ due to an ‘attachment’ leading them to ‘becoming …part of the family’. Additionally, the resident is conceived as ‘extended’ family of the personal carer, who ‘knows them and their history’. However, this familial relationship is not universal. This divide has implications for care providers who understand that they represent the best interests of the resident and family in the context of telling the truth.
AT:..(You say) you have a relationship in which they‘ve (resident) become part of your extended family? D1: But there is still that fine line that we’re not to step over. Because we are not blood. D2: But if we have the family’s recognition … D3: There was an attachment there. AT: So is it about the relationship that you are having with the family as well? D2: Yes that’s very important
The personal carers suggest that the ‘fine line’ that demarcates the carer/resident or carer/family is breached when the family acknowledge the carer in the family sense. They perceive this familiarity as evidenced by the family seeking the personal carers’ opinion. Personal carers at another aged care facility concur (C). The personal questioning is answered – even though it is not supposed to be, on the basis of the bond that exists as a consequence of duration (time) with the resident and frequency of visits and involvement of the resident’s family. In a group discussion about a personal carer’s concern about telling a resident about the resident’s impending death, the researcher asked: AT: What is the barrier there? (D3) has said “I hope that I didn’t say the wrong thing?” Why that barrier, why that anxiety? D3: I think its because you’re stepping into someone else’s territory . They’re (residents) not our family. Should we be the person saying to them “Yes you’re going to die” or should it come from their family or their closest friends? Or you know like we aren’t exactly attached.
In the care circumstance surrounding death and dying, the personal carer questions her role responsibility and the very nature of the relationship. This same carer was described previously in this section as ‘becom(ing) very close with both the resident and the family’. Death disclosure changes this ‘bond’ (the relationship between truth disclosure and death is examined in a forthcoming section: Residency). 5.3
Knowing and Truth-telling
The link between truth-telling and knowing the residents (and residents’ families) is that in their knowing, care providers gauge or judge another’s capacity for coping with being told the truth and therefore know what is or is not in the resident’s or family’s best interests. The breadth and depth of this knowing and who is known, (as described below), determines why and how care providers will or will not tell. In this edited passage of conversation from a group discussion the carers make clear how knowing (the resident) is integral to their comprehension of truth-telling:
Sta2: When you know, how they, I don't know, there is things, you know… … Sta5: This is the personal involvement you get with that resident … Sta2: And that is how you make a decision isn’t it. Sta5: Oh, yeah. Sta2: On whether you are going to tell the truth or not, on how well you know.. Sta3: Or how to couch it..
This passage clearly establishes the connection between knowing and truth-telling. Personal carers and the physiotherapist premise decision making on relationship building and maintenance rather than rules of veracity and/or autonomy. As other carers expressed it and a nurse (team leader) agreed: A6: If you know the resident that well you know whether they could cope with the truth or not.. ANL: Exactly…that’s what its all about.. A2: (ii): Listen to what they are saying. You can pick up a resident’s reaction by a lot of what they say, how you are going to handle the situation. Sta2: (ii): …And you have to care enough about them to like them. You have to care enough to tell them lies or tell them the truth. C3: (ii): …(T)here’s some people who don’t want to know (the truth). I don’t think you know unless you know the person.
5.3.1
Temporal knowing
To know another requires time with another. Herein a carer introduces the relationship between time with, and knowing about, the resident in care: Sta2: The families haven’t, they haven’t come to, they haven’t come to reality as to how their relative is now physically, emotionally, whatever… Sta2: (Go) to the residents cause their family is not there on that day, you’ll go back and to make sure in yourself that they (resident) don’t really want to go because you know that person, that resident, you know them pretty well … But then… "Why wasn’t my mother or father taken out on that drive, they love it". How do they know? They only see them once a week.
An element of the carers’ ‘know(ing) that person, that resident…pretty well…’ is the duration and frequency of involvement with the resident. Carers establish a deeper insight into the resident as a consequence of time. Knowing the ‘now’ resident is an insitu knowing that includes clinical awareness (changes to the physical, the body) and psycho-emotional awareness (preferences and desires). This notion of temporality was complemented when in a follow-up interview a carer commented: C3: (ii): …I think as time goes by and they’re (residents) changing and they’re going down we probably in a way knowing them more than the relatives in the end. Because we’re here with them all the time….(W)e can see where they’re (residents) at because we’re with them all the time.
Personal carers establish a friendship with the resident’s family. The friendship develops – ‘…you think you know them…’ (C2), over the time that the resident’s family are involved with the resident in care. The greater the time (duration) and the greater the involvement (frequency) with the resident in care, the greater the knowing and subsequent friendship with the resident’s family. Elsewhere, this emphasis on temporality and knowing the resident family was expressed as bonding time: D3: We become very close with both the resident and the family. The family that cares a lot for their elderly person that they put in often… D1: …bonds with us. D3: …and they come in regularly and we’re all on first name basis…
The family that ‘cares a lot…’ and visits ‘regularly’ has more contact with the personal carers. Personal carers develop their insight into the family who, over time, engage with them on a more personal level, seek their advice and opinions and establish trust in the carers. Previously, the data revealed that the personal carers understand their relationship with residents’ relatives as ‘family like’. Additionally, the carers associate institutional practices as also contributing to their knowing-the-resident as family: C3: And I think since we have been, the last say four years, we have stayed on our own wing. C2: That’s right. C3: And since we have done that and not got round our whole centre, since we have done that we do have a good relationship, but sometimes we have special ones with our residents and the relatives. And it’s like more family like.
This ‘family like’ nature of the relationship is also fostered by the institutional practice of staff remaining in ward areas rather than rotating them through out the facility. A C nurses’ discussion group also made a connection between the relationship and assessing another’s capacity for disclosure: CPJ: …So you have to gauge… CAH: You judge don’t you? CPJ: You have to gauge each person so it goes on the relationship you have with them… CAH: That’s right. .. CPJ: …for example if you, we’re talking about (Michael’s) Mum…so I say to him: “Yes mum is dying, can’t tell you when, no one knows when it is going to be but it’s going to happen”. CAS: That’s right you do, you gauge…
Forming a relationship with the resident’s relative facilitates the nurses’ ‘judging’ or ‘gauging’ what and how to disclose. As CAH explained:
CAH: (ii): …You would be able to feel how much that relatives need to know, how much they could cope with any given time and what they would comprehend.
Over time, within the relationship between nurse and resident’s relative, the nurse makes decisions about ‘edging around the truth’ (what to say) and ‘playing it down’ (how to say it). The conversation continued: AT: So how do you get to that point? CAH: I think working in aged care…I’ve been working here for twelve years… CPJ: I looked after (Michael’s) Dad, first. CAS: Same here…You form relationships, yeah.
The nurse-relative relationship is ‘formed’ as a consequence of temporality – the duration of the engagement and the care providers experience in aged care. In the case discussed here, the nurses had cared for the son’s father and now the dying mother. The relative’s views were stated and therefore known. The nurses knew conclusively what the son wanted, (He) says, ‘I am a really practical man I want to hear it straight…’
and they had come to know him through a high degree of engagement, saying and you know then from what people…say to you… How they react to you, talk to you, how they talk to you, what they expect of you. Yes, as (CPJ) said, he wants it straightforward. He knows it’s going to happen.
In the group discussion below, the nurses’ share common views about knowing the resident’s family – views similar to the personal carers’: AT: What goes into your working day life and circumstances to come to that knowledge or insight of what... DJJ: What they need to know and what they don’t need to know… DNB: Years of experience… … DGS: And also it depends on the family-if they come in often. If they are really concerned, if they keep in touch with their mother or father or whatever and they like to know what is going on. Some relatives don’t. … They might just not care as much, so you have got to make a choice how much they need to know as well and what they really need… what they want to know. DNB: If they are really actively involved …then it is easier for us to be a bit freeer with them…
Herein, the nurses understand their knowing the resident’s relative(s) aids their decisions about what information the residents family ‘need’ and ‘want’ to know. A colleague (nurse) from the final aged care facility, writing in her Personal Journal (containing the Nurse’s story – Relative of a resident rings up), wrote: EPO: DE: Staff…are protective of patients and families. Some families can’t cope with adverse news-you get to know who you can be open & very honest with while telling other families (ones who don’t cope as well) you do “lie” by
minimizing you tell them as much as you can in a Rosy Gentle way – never destroy hope, most don’t want the whole picture anyway -…
When family are perceived to be involved with the resident in care, the carers are able to be ‘free-er’ or ‘more open and very honest’ with them. This idea about being ‘free-er’ with the resident’s relatives and involvement with a resident’s care was made somewhat clearer in an interview with DCI. Asked to comment DCI explained over the course of the interview: DCI: (ii):…(W)ell I would say about ninety percent of the time we don’t tell them (relative) about behaviours. We would only tell if they were already aware and they asked… (Telling) would depend on how often they visit as well. I think that makes a lot of difference as well…. (S)o they (relative/family) may already have an insight into some of the behaviours that we’re talking about…
The understanding that telling another (becoming ‘free-er’ to tell) is conditional on the frequency and duration of involvement of the resident’s relative was summarised by DCI’s ‘analogy of the babysitting’: DCI: (ii): I’ll go back to the analogy of the babysitting. If the mother came in and she said (the baby) was in a really bad mood this morning. Was she naughty, did she carry on? Well that frees you up to say ‘(S)he did have a bit of a temper tantrum…If the mother comes in and there’s the implication that the child is an angel..that makes it harder to say anything and you probably wouldn’t. So it would depend on how well you know the mother of the child, so that comes back to how well you know the relatives… If the relative knows what the person (resident) is like here and they can see it, then they may raise it, they may raise the issue ‘Is this behaviour still going on?’ You might down play it ..but you’re just free-er to talk about it. If they don’t know you, they don’t know the situation, they hadn’t had any contact..etc
Therefore, the nurse concludes that when a relative is considered to be in the know about a resident’s behaviours, the nurse will disclose these behaviours provided and assuming that hearing such information will not cause upset. Where the nurse concludes that a resident’s relative is not in the know about these behaviours that are deemed to cause upset, the relative is not told. In essence, the nurses operate from the position that it is best to be silent, omit telling, utilise a euphemism in the guise of the ‘half-truth’ that brings a smile rather than a whole truth that brings a tear (various understandings here are justified and displayed later in the data). The understanding that the nurse can be ‘free-er’ with resident’s relatives involved in the resident’s care circumstance found support in the E nurse group. In particular they agreed amongst themselves that a nurse is able to ‘more freely, more openly’ disclose about death and dying to those family members who had had involvement with the resident (relative). The general view was this capacity for more openness
was as a consequence of the family member(‘s) expectation and awareness of the (‘now’ person) resident’s dying and death. The free-ing of information or greater openness emerges as the nurse comes to understand and know the family more completely, over time. In the context of knowing that emerges in the nurse-family relationship, a nurse (team leader) offered a critique: ANL: (ii): Now some people, it’s what you call pre-judgement – they say ‘Oh, well, Mrs-so-and-so and her son doesn’t come and visit her’. They forget that there maybe a reason – we have to be careful in all life that we don’t judge everybody and what gives us the right to do that? They could be a very good son, and may come only every three weeks or whatever. People here judge people by how many times they come…you have to be careful..
5.3.2
Experiential knowing
Other than a knowing that comes about from time with another, personal carers and nurses alike recognise that they have ‘know-how’ and ‘know-what’ to do. Their ‘knowhow’ stems from their intuition and their experience. They know-what truth to disclose, what truth to omit, the way to say it and they know who can and who can not cope with the truth. D2: Yes, you look at them, you see their body language, you see their facial expression. Now, should I tell them? If she really wants to know, it’s their right. They should know. AT: Yes D2: And you tell them because you know that she can handle it…. … Truth-telling, well it hurts. It hurts to tell the truth to somebody you love but also we have to be merciful also, have mercy on them because they can’t take it. So we got to tell a “white lie”. … … It’s in stages. I would do that if I think that they can’t handle the emotion in order to accept the truth.
The duration of the relationship and the experiences the personal carer shares with the resident facilitate the carer’s knowing when to tell (‘timing’) but also ‘how (to) tell’. Knowing-the-resident, described as ‘You tune in’ (D2), facilitates the interpretation of physical attributes that allow the carer to determine the resident’s readiness and capacity for ‘want(ing) to know’ the truth. In her group discussion, a nurse manager recalled an interaction with a resident who asked her if he was going to die. In part she said: CPJ: …but I think he wanted to know though. And I knew that, I sensed it. I think you use your intuition. .. CPJ: I mean it is through years and years of experience that you gain…
The ‘knowing’ as a ‘closeness’ that complements this ‘sensed’ and ‘intuitive’ insight was described: B1: (ii): (Y)ou get the feel as to what they’re (resident) like.
The passage emphasises the nurses’ intuitive knowing- a ‘sense’ of the occasion within a relationship. The nurses predetermine ‘what to say’ and ‘what not to say’ to the resident premised on intuition. However, an element of this intuition as a capacity to ‘sense those sort of things’ is work experience. Knowing the resident becomes a ‘knowing’ that is intuitive (what is sensed) and experiential (what is known). A nurse agreed with this insight into ‘intuitive’ knowing, but indicated a limitation that has implications for care providers’ claims for a capacity to gauge or judge what to disclose to the resident or resident’s relatives. The researcher asked: ‘Tell me about this ‘gauging’ what the relative ‘needs to know’: DCI: (ii): I think it’s intuitive. In one sense it’s intuitive. But it’s also, I was going to say common sense but there’s no such thing as real common…I can’t explain common sense..I don’t like the term..because common means universal and it’s not universal sort of sense because..not everybody has the same…
The following conversation is further reviewed in the section: Residency. Here the passage explains further how carers come to understand ‘what goes on’ generally in aged care based on their experience: C3: Um, yeah I think we get from us at this end where we see things, we get a bit hardened too. And I think we can see more so than the relatives .., what that person is like. I think we can see more reality than most people who’ve never ..been into a nursing home or, because nursing homes are pretty shocking places for people who have never… .. AT: So what, what do you think they see that concerns them? C3: In his case he sees little old people sitting in awful big chairs in different positions, dribbling, making weird noises…
Experience in residency (aged care facility) generally, provide the personal carers with the ‘reality’ of institutionalised care life. Whilst the naive observer may experience the ‘nursing home’ as ‘shocking’ containing elderly residents ‘dribbling’ and ‘making weird noises’, the experienced carers comprehend more completely and within context ‘what goes on’. However, the personal carer in this discussion does provide a cautionary note by suggesting: …yeah I think we get from us at this end where we see things, we get a bit hardened too.
Experience does have the potential to provide the carer with knowledge and familiarity with the system. However, when such experience means that, for example, the personal carer describes herself as ‘hardened’ to the context and culture that is residency, the care provider needs to ensure that experience does not manifest as routine and uncritical actions. (For further data about and analysis of the aged care circumstance see: Residency).
A carer from the first aged care facility, writing in her Personal Journal (containing the Nurse’s story – A couple of Shifts in a Nursing Home), wrote: A6: DE: …I know all my residents, their likes, dislikes, moods and sometimes reason for them so I think if they need to know the truth, but I think it will do more harm than good, I’ll cushion it. …
Additionally, B1: (ii): ..I always talk to her about her family and she always talks about her feelings. You get to know them very well in a way… C3: (ii): …I feel that being closer to the resident, working with them day in and day out. Knowing them, knowing every little idiosyncrasy. Knowing what care needs to be done for them..
The carer’s insights into the resident extends into knowing the resident’s preferences and psychological state. Consequently, the carer ‘softens’ the truth when it is considered that telling the truth causes harm rather than promotes a good. Challenging the above carers’ claim for knowing the resident, a nurse suggested that whilst the carer ‘does a good job…is doing a good job’ and ‘feels as if they are doing the right thing for (a) resident’, ANL: (ii): (T)hey don’t know the family, they don’t know the resident’s condition, they don’t (know) all the history of that person. They’re just dealing with that person everyday, going in and showering them…There’s a lot more than just showering and feeding them… (A)s a Team Leader ..we get to know all this by interviewing their families and we get more opportunity than the carer to speak to the son, to find out what their (resident’s) life was, to find out the important things to them.
5.3.3
Identity - (who is known?)
It is with duration of time and influences of experience(s) that the care providers conceive of their ‘knowing’ the other. Emergent out of the data was the following expose of the identity of the known other. The temporal influence on knowing emerged in this conversation about the family’s request for what was considered to be an inappropriate care intervention: C2: Sometimes I don’t think they realise that their father or mother has deteriorated to the point that they can’t… C3: Some of them can’t accept that they are going down that far…
The personal carers know the reality, the real, the now person resident: C3:..(W)e get to know these people better than their relatives know them now as the people they are now….(T)hey can still remember them as they were more so than wanting to know the reality of what they are like now…
The personal carers’ clinical knowledge about the ‘now-person’ resident causes conflict with the family member’s demands for the resident’s care. The carers work in
and respond to clinical decisions made in the present – the ‘now-person’ resident. Carers spending a long time with the ‘now-person’ resident perceive themselves best situated to know what is beneficial for the resident. By contrast, the resident’s relative, as an occasional visitor, identifies with the ‘past-person’ resident making care demands that are considered inappropriate for the current circumstance. The data below further illuminate an insight into knowing-the-resident – the ‘nowperson’ resident, the resident in care, in contrast to the ‘past-person’ resident, the resident as a relative who was once outside of care: C2: …“How has Mum been today?”…she’s punched you, she has kicked you and she’s bashed you and you say “Oh, not too bad, she’s been a little bit naughty today” but you can’t say… C1: No. C2: Lets face it, it makes it harder for them when there is an accident or incident that needs to be brought to their attention, they think “Mother’s never done that before”, … I mean most of them know their parents usually the opposite. …I mean, if you told them the truth, they probably wouldn’t believe you anyway. A2:..They (family) have this vision of their parents as they were growing up and that vision stayed. That vision of getting old or losing is, you know, hard to comprehend…
The carers consider that the ‘now-person’ resident that they know is not the ‘pastperson’ relative known by the family. The behaviours of the ‘now person’ resident are not disclosed to the family who aware only of the vision splendid of the past can only ever know the ‘past-person’ resident. (The non-disclosure of behaviours is more fully examined in a later section: Residency). In the care provider’s view the best interests of the family are served in the sense that harm is avoided, by holding to the ‘past-person’ as the resident in care. An outcome of this is that the family is denied the current reality. When confronted by the reality of the ‘now-person’ resident, the carer understands this as a reality shock – ‘Let’s face it, it makes it harder for (the family) when there is an accident or incident…’. In the interview when asked about this insight – ‘Let’s face it…’ and asked to comment on the researcher’s understanding that reinforcing the ‘vision’ is counter-productive if family are to ever comprehend the ‘now-person’ resident, a personal carer commented: C2: (ii): …I think we’re doing more harm to ourselves (care provider)..I think maybe it should be done that they know…we are probably doing worse for ourselves…I mean, it’s all in (the) paperwork and files but then, you could bring out a file and it could say ‘violent today’ or whatever…but the family are not aware of it.
Whilst a fellow carer in her own interview suggested: C3: (ii): …And some of them (relatives) get really upset when they find out.
5.3.4
Labelling the resident CPJ: …You have got to be really careful with the information that you have. I mean even like when new people come in, if I get told something really bad about the person who has come in I try not to let that out in a way because I know that they, the residents, get labeled as soon as they walk in the door.
The nurse manager recognises that residents risk on admission becoming stereotyped, labelled. As a strategy to avoid this, she conceals potentially stigmatising information. 5.3.5
Infantile resident
What emerged from out of the data was the infantalisation of the resident. Care providers labelled or utilised metaphor to construct the resident as like a child, therefore cared for as a child and spoken to like a child. A personal carer considered truth-telling and the telling it as if to a child: D2:…Truth-telling, well it hurts….So we got to tell a “white lie”. We go around the long way and we try to tell them as we would…to a child so that it’s not all at once.
A nurse at another aged care facility utilised the metaphor of ‘babysitting’ to give meaning to her telling as the resident is cared for as a child (see also section: Residency): DCI:…The level of truth-telling we were talking about was relevant, it’s probably not unlike you know if you are babysitting a child…you don’t usually say “You know they broke all my best pottery..” you know the information the mother wants to know is that they were well looked after and they were OK.
This perception about what ‘mother (resident’s relative) wants to know’ was strengthened by another nurse in an interview discussion about disclosure of information in a case conference. The relativesCAS: (ii): …don’t want to know about the bladder, urinary and bowel situation a great deal, so I don’t talk about that sort of thing. They’re basically just interested in if Mum or Dad are getting the right care, is Mum, Dad happy, these sort of things.
In the context of truth-telling in practice, the truth-disclosed (Td) is understood as ‘relevant’ and the truth-omitted (To) as ‘irrelevant’. What is omitted is the truth that spoils the vision splendid. It is gauged that the adult family member is unable to tolerate knowledge about their relative that fails to conform to the vision splendid. (For detailed data and analysis about truth-telling in practice, see: Residency).
If a competent adult is so grievously devastated by the spoiled vision, carers as good and happy helpers (see: Role) become the sole beasts of burden of care. Additionally, the professional relationship described as ‘baby sitting’ has as its justification burden reduction. The researcher sought clarification about the use of the babysitting analogy asking at interview: ‘It is interesting that you talk about babysitting and the care provider and the child. Is that what it is like?: DCI: (ii): Not..in the sense of child minding and..being child-like but …You’re an outsider caring for somebody else’s child as you would if you were a grandparent or in a babysitting club or a neighbour or something like that…
Relevant truth-disclosure is thus likened to sharing information in a professional relationship described as ‘baby sitting’ or a role conceived as one of in loco parentis. As such, the nurse (as baby sitter or child carer) discloses filtered information to the family (as resident’s parent) resulting in the resident having the status of a child. A personal carer at A and B confirmed that the resident is like a child: A2: (ii): You know them as well as your own children. It’s like having a small child who is dependent upon you. There’s really no difference. B4:DE: You have to be a special person to work with the elderly…basically they are like children: demanding and quite happy to get you in the shit if it suits them.
Labelling the resident as or like a child encourages behaviours within the care context by the resident that would be understandable. That is, the resident considered child-like, behaves in a child-like manner. Child-like behaviours include those in which one denies (lies) about an act when one is in fact responsible. Children lie (deny responsibility), so does the resident who is recognised at times as a truth denier: C2:DE: On the other hand the resident can tell lies eg. the other day one of the male residents had used his bowels all over the room. When asked about it he lied and said the other man in his room did it.
The resident’s reason for ‘tell(ing) lies’: C2: (ii): ..(B)ecause they’re probably embarrassed and upset and they don’t want to believe that they’re like that, so then they tell them..they do lie, I don’t like that word ‘lie’ but yeah they tell fibs.
In their daily work, residents are prone to false claims and subjective interpretations of the truth. The carer’s role-interpretation as the good and happy helper with a brief to avoid resident upset, influences the resident’s perceptions and reduces emotional upset.
5.3.6
The contradiction of infantalisation
Whilst the identity of the residents, was frequently established as a child, personal carers expressed their views to the contrary when a family asks “Don’t Tell”: D1: “The last time I saw Toby (pet), he was looking well wasn’t he?” (laughter) D3: And some residents don’t want to be treated condescendingly - they want to know, that, you know: “Don’t treat me like a child, I’m old enough… D1: “I’m not stupid.” D3: …I know what you. I know that something’s wrong. Tell me”
This supports the perception that residents have an awareness of events (particularly bad news eg death of a loved pet) within their family or about themselves. (A discussion about awareness and its implications in furthering an understanding of truth-telling is forthcoming, see: Residency). Elsewhere (see section: Role) the personal carers engage in denial and obfuscation because their role belief has them assign to the family responsibility for truth disclosure. However, here they acknowledge that residents want to be treated as equals in the professional partnership – not as a child in the care of a parent. As such, the resident wants to be treated respectfully and informed. Here, the personal carers describe a view of the residents that demands a disclosure response that is at times in contrast to what they might actually do. 5.3.7
Knowing (relational) ethic
In understanding the care providers’ knowing and the importance they give to the relationship with the resident or resident’s family there exists as a framework to respond to ‘What ought I to do about telling the truth?’ a relational ethic (see also section: Residency). A carer wrote in concluding her Personal Journal, with the Nurse’s story – Poor old Gilly: B1: DE:… If there are no benefits to truth-telling, only harm, then you weigh up the odds and make a decision. Although this is not an action that takes a long time to process, by knowing the resident it’s a natural thing to do and part of our care…
The carer in this journal entry proposes that a role element is aiding the resident to have both a ‘fulfilling lifestyle and quality of life’ in residency (‘this stage of their life’). Integral to the care provider’s role is that through the relationship with the resident is an ethic premised on knowing and harm minimisation. The relationship formed with the resident’s family by the nurses, including in this group the nurse manager, assists the care provider to know what to say and how to say it:
CAS: Well if you have received information that a person’s condition, a residents condition you know how bad it is but you’ve tried to sort of play it down a little bit, not totally, but just a little bit to the relatives, so that it doesn’t seem quite so hard. CPJ: Nurses tend to do that though, they tend to try and avoid hurt…I mean, we try and say, and you do it, its all part of your job. CAH: I mean you might have… someone is terminally ill with a cardiac condition but you are not just going to say: “Mum’s going to die”.
An ethic underpinned by harm minimisation operates in conjunction with the care providers’ widely held view that the truth is ‘hurtful’ with the necessary consequent softening or ‘playing down’ of the truth. Asked to comment further about this commentary in the group’, C AH added: CAH: (ii): Yes, I’d agree with that and I do that. Especially if it’s very bad news about their condition, I would …make it a bit more gentle by saying just how poorly that person was and I would advise people to come in and I would never actually say ‘I think Mum is dying’. I couldn’t do that.
Clearly, whatever is said (and omitted) is calculated to avoid harm. Concurring, the nurse (manager) reflected in her Personal Journal (containing the Nurse’s Story – Relative of a patient rings up): CPJ: DE: During the course of my nursing career I have lied many many times to patients and relatives..(T)here have been numerous times when I’ve ‘bent’ the truth, ‘concealed’ the truth, ‘omitted’ to tell what I know in order to mainly prevent or avoid causing ‘emotional’ pain…
For the purpose of a greater good – notably ‘prevent or avoid causing ‘emotional’ pain’, truth-telling in this nurse’s clinical practice has been subjugated by the ‘lie’. In her understanding, this has meant ‘numerous times’ in the past, bending and concealing the truth and omitting to disclose. As with other nurses and carers, any guidance by a rule for truth-telling is considered against the background of the relationship shared by the carer provider-care receiver and the care provider-care receiver’s family. Consequently, in her current practice: DPJ: (ii): (I) try and make a judgement so that what you tell the person is going to (be) the truth but in a way they can handle.
5.3.8
Knowing: The resident’s perceptions E1r:…I talk about everyday subjects and all that and my family, they’re very interested in what your family is. They’re very interested in getting to know your family. Whenever anyone in my family come, they always bring them a cup of tea, have a few words with them when they come in…
Later in this interview, the researcher referred the resident to the Nurse’s Story: Relative of a patient rings up, in her journal. The interview continued:
E1r: I don’t think that the family have that much contact with the carers. If they (family) ring me and ask me how I am, I tell them. They never talk to the carer. AT: What about the sisters? E1r: Only if they (family) strike them (nurses) in the passage way or something. .. AT: …(O)ne of the central themes around this topic of truth-telling that I hear, is that the.. ‘client worker’ gets to know the resident and the resident’s family well. There’s a really strong sense of knowing… E1r: Yes, well they do that here. They try to get to know the families. Anytime that I’ve got visitors, they come in I always introduce them to the carers and they immediately call them by their Christian names.
In this aged care facility, the carers and nurses are interested and try to get to know the family but ‘contact’ is occasional, brief and unplanned. Whilst the informal use of names accompanied by the service of refreshments is praiseworthy, the perceived interaction must be set against the nurse’s views about the importance of ‘keep(ing) the family on our side’ (DGS) and ‘families also need to trust us’ (DJJ). Additionally, the adequacy of knowing portrayed by this resident is consistent with the carers’ and nurses’ perception that the relationship developed is a function of duration and frequency. However, her perception suggests that the interactions amongst family and carers – nurses is brief. Interactions that are brief may not provide deep, adequate knowing. Personal carers and in particular the nurses place great emphasis on the breadth and depth of the relationship they establish with the resident’s family. This relationship is integral to their understanding of truth-telling as it is the basis upon which they ‘gauge’ or ‘judge’ what truth to omit or disclose in the family’s best interest. This same resident, in discussing her relationship with the ‘carers or the sister’ said: E1r: Well I’ feel they’re doing a job. I haven’t, what I call made a real friend of any of them..
5.3.8.1 Truth-telling and knowing A resident suggested that truth-telling very much ‘come(s) out’ of a care relationship that has a full understanding – an all knowing insight, into another: B2r: (ii): Truth-telling would come out of a relationship which fully acknowledges all of the experiences of the person concerned…
Throughout the interview, the resident articulated more clearly what she meant by this view. The resident cautions against assumptions, particularly assumptions (judgements) that fail to not acknowledge the resident’s history: B2r: (ii): I think I would be concerned that people..speak to you as they see it themselves and its really important as carers that they interact in terms of what they know you have to contend with and as you would speak … to them knowing that they would respect what you would say without assuming it was the only thing you would say. Don’t make assumptions about me on the basis of the interactions with me in the present. Take notice of the past as well.
‘Professional(ism)’ in the care provider- resident relationship demands that assumptions (judgements) about the resident in care are premised on a full knowing (‘past-person’ and ‘now-person’) that is, individualism: B2r: (ii): …I believe a professional person looks at things in the whole and tries to see each person as she is…
5.3.8.2 Knowing and relationships A resident at C understood that knowing what is best for another resides in the nature of the relationship one shares. Asked: ‘Who best knows the person?’, the resident responded: C2r: (ii): Not always the one with them, I think. AT: Not always the one with them… C2r: (W)e’ve always had a good understanding in our marriage..fifty years of it but often the spouse won’t be the best person…Depends on the relationship if they really know each other. AT: Can the (care providers) know the residents well enough to make decisions about your condition? C2r: I think they get to know you fairly well….
Further in the interview, the researcher re-visited this question: C2r: Oh, yes, they can get to know you very well. AT: So they can make judgements or gauge… C2r: Depending on the relationship you have with them…
In the resident’s view, the duration of an engagement between individuals is not necessarily enough for one to come to know what is best for the other. Additionally, whilst care providers do ‘get to know (residents) fairly well’ or at least ‘can get to know (residents) very well’, what is fundamental in this resident’s insight is the nature of the relationship shared between the care provider and resident. It is the care relationship that determines knowing the resident enough to make decisions on the resident’s behalf. 5.3.8.3 Know-how and know-what The researcher asked the group:
AT: So who do you ask? Who do you talk to? If you want that kind of information? B1r: Well apart from seeing you and RN’s or the doctor, I always approach the doctor I think.
Residents’ seek information from the nurse or doctor. Elsewhere, resident B1r commented: …if I was to say to one of the (carers) do you think I will get any better, well she couldn’t truthfully say that she knows my history. So I wouldn’t ask any of them anyway…. B1r: (ii): Some of them do (know my history) but not all…They usually look at the records and some of the things are on there, but it’s in a shortened form.
The role expectation for this resident is that information disclosure rests with the doctor or the nurse. However, in some situations doctors are perceived to be reticent about open disclosure. This reticence is understood to be formidable. Whilst the resident (B1r) denies any immediate or personal encounters she understands herself to be ‘between the devil and the deep blue sea’ and, overall, ‘its best not to attack it’. The resident is not prepared to challenge the authority of the ‘medical profession’. In a follow up interview a resident commented: A1r: Well some of them (personal carer) are very good, some of them are just ordinary housewives that come in and ..showering people, they learn how to shower – some of them do, some of them don’t, I find that the nurses who have come from University don’t know as much as the hands on carers…they (don’t) have the hands on knowledge, but some of the older nurses that have been in hospitals…….
The resident delimits the labour and experience of the carer and nurse. The former’s ‘hands on’ knowledge and the hospital trained ‘older nurses’ experience is superior to the ‘University’ educated nurse. In a follow up interview, the researcher asked a resident ’Could you) expand on, this idea: If you are going to be confident with the staff, if you are going to trust them, then they have to be honest?’: A2r: See and they’ll tell you they don’t touch my arms: “I didn’t touch your arm” they’ll say, and I say “Yes you did and don’t do it again”. I answer them back. ‘Cause they do it, then they have the cheek to tell me they don’t do it with all those marks there….But its usually a nurse that isn’t on around here very often. … Sometimes the nurse that’s on with them tells them, I think that’s lovely - when they do that. But they should find out all these things, I shouldn’t have to tell them.
The resident’s understanding about having confidence in the staff is that the care provider is informed about the resident’s care requirements and also communicates with her truthfully. The resident here concurs with the view that knowing (at least about the care requirements of the individual) is a function of time (duration and frequency). This resident’s experience is that the care provider (carer) is not always
informed enough ‘to do (the) job’ but equally she is grateful when ‘sometimes the nurse that’s on tells them’. 5.4
Care in their Best Interest
It has been proposed that the link between truth-telling and the nature of the relationship is that both carers and nurses in this study premise their understanding of truth disclosure on knowing the resident’s (and resident’s family’s) capacity for coping with being told the truth and therefore knowing the resident’s or family’s best interests. The data revealed that whilst the resident may be the focus of their care, care provider’s are also aware that other’s have an interest. 5.4.1
The priority of care B1: (ii): My first priority is the resident, then the relatives I suppose….The first priority is to the resident…the resident is my focus. CAS: DE: My duty of care lies firstly with my residents…. B2: (ii): You have to give all to the resident. My job is is to care for the resident ..first and foremost… ANL: (ii): (W)ell the most important person up there is your resident. End of story OK. The bottom line is the resident must be happy at all costs. Make them happy. D1: …The resident is our first and foremost…
Generally, the care providers in this study understand that the priority of their care is the resident. This view is singularly consistent for the personal care providers who acknowledge that their role as ‘hands-on’ carers means that on a day-to-day basis they are dealing with the resident. Whilst the nurses cite a duty of care ‘firstly’ with the resident, as role perception dictates, the nurse is also aware of a duty toward, and involvement with, the resident’s family. In a A group discussion the care providers discussed truth-telling and what is in the patient’s best interests. In a follow-up interview the researcher sought further insight: AT: (ii): In the group discussion (carers) spoke about truth-telling and what is in a patient’s best interests.. ANL: How do we know? Yeah – we don’t always know what is in the best interests do we? AT: How do you work out for yourself or amongst your colleagues what is in the patient’s best interests? ANL: (Y)ou go through a process of getting information from the carer..from the family..from the doctor and try to put it altogether. There is a motto and my motto is ‘You never do harm’.
Whilst the researcher suspects that the carer may not know what is in the resident’s best interests (and the nurse concurs) the nurse here also understands that in her role she can decide on the basis of consultation amongst others. However, in this critical (of others) voice the resident remains a notable oversight as an information source for determining the resident’s self interests. 5.4.2
Pander other’s priority
It was revealed that the care providers are also managing the interests of others. The researcher asked ‘So they (resident’s family) say to you “Look I don’t want Dad at the case conference”. What do you say to Dad?’: CAH: (ii): (S)ome relatives do not want them (resident) to come (to case conference).
The group discussion continued: CPJ: And sometimes you wonder whether who you are looking after because sometimes we are looking after a relative and pandering to their every whim rather than the resident. CAS: Rather than the resident, yes.
CAH agreed. At the interview she confirmed: CAH: (ii): That does occur. That’s what it feels like. ..I suppose they (family) want all the attention and they want it done their way. There’s not a lot you can do about it at times.
The resident’s autonomy, supported ideologically by the care providers with their understanding ‘the resident is our priority’, is contested by the family’s demands. The nurse manager above questions – ‘who…are (we) looking after…?’ The nurse’s relationship with the resident is in tension with the family’s role of representing their relative’s best interests and welfare. The family’s involvement with the resident’s care and the subsequent frustration the nurse below (and nurse manager above) express, is revealed in the following journal entry: ELQ: DE: How many drugs are prescribed by doctors to please relatives who expect something to be done?
Additionally, a discussion group of personal carers at C suggested: C3: I think when they (resident) are still competent, I think yes, they should. They make their own decisions and that’s fine. But the ones that can’t and have relatives…sometimes they (relatives) come once every six months and make a decision.. over riding RN’s (registered nurse) here who are with these people (residents) 24 hours a day and doctors, I really think some of them (relatives)sometimes have too much…input into the resident. Because sometimes they (relative) are demanding things that aren’t beneficial to the resident.
An example of a clinical case was offered to support the above insights: C3…Well we have this lady that did this to me the other day. Her niece.. comes in every six months..(she) cracked up because she (the resident) was in bed. “I don’t want her in bed”….(B)ecause that women (niece) said so, we had to get her up after breakfast every morning and not put her back before seven o’clock at night. Within 3 days her back..had break down on her back from being out of bed for too long..(T)hat women (niece) shouldn’t of had that right when everyone here knew, even the RN said: “No, it’s not good for her”. So I don’t think she (niece) should have been allowed that right. When everyone here knew that it wasn’t going to do that lady (resident) any good.
The personal carers know what is in the resident’s best interest and see themselves as most suited to represent the resident’s care interests. However, the case of the resident and her niece narrated here by C3 suggests that both the personal carers and the nurse acceded to the family member’s wishes even though this was contrary to their perceptions of best practice and resident’s best interest. Expressing a sense of the family’s ability to emphasis their interests - writing in her Personal Journal containing the Nurse’s Story: Relative of a patient rings up, a personal carer wrote: B2: DE:… And I mean whose feelings are they, are they the relative’s, family’s, you know. You’ve got to understand whats behind it, please don’t..that’s probably how I’d react, ask them, whose feelings..is there a reason for that because then you are put in a situation, aren’t you, where you’ve really got to lie….
In response to the family’s request “Don’t Tell them (resident) I called” the carer indicates that family may have a reason. The narrative indicates that a tension between the carer-family relationship as set aside the carer-resident relationship causes the carer to lie. This consequence of relationship priority confronts and weakens the afore noted ‘the resident is our first and foremost…’. The nature of the personal carer’s relationship with the family and priority obligation toward the resident is further revealed and supported by the perceived ‘intimidat(ing) family’: B2: ii: Say you’ve got a resident who is frail, timid type person..and they say ‘I don’t want my family to know’. The family who are middle aged who are professional people who come in - ‘How’s Mum? What’s happening, tell me all about it’. You can..be intimidated into doing what the family wants rather than what the resident wants.
5.4.3
‘Other’ as a priority
The multiplicity of ‘clients’ is a view that stems from the understanding that the residency, the care circumstance, is ‘family-centred’. Whilst the resident may be the
‘priority’ or ‘first and foremost’ amongst care providers, amongst others who oversee the daily management of the aged care facility, this view of singularity is too simple. BCT (ii):..(I)n this environment with family-centred nursing is that we don’t just have one client, we really sometimes have multiple clients. Even though the resident is our primary client you’ve got to consider everybody in the big picture. Not all our residents can communicate so their wishes are often communicated through the residents’ family and so they become sometimes as important or major to us as the resident herself.
Consequently, the resident as the ‘priority’ competes with and is weighed against those other ‘clients’’ demands. Amongst her nursing colleagues, the views of the nurse above found support in the experience of a nurse elsewhere. In this experience, the nurse accedes to the wishes of a resident’s wife who has asked ‘that all staff not tell’ a resident’s daughter that the resident (husband/father) was in hospital with a fractured femur. The nurse stated the daughter was: CAS: ..(A)ngry.. she wasn’t informed of what had happened. I said that’s exactly how we all felt. Whilst we respected Mum’s wishes, we didn’t like doing what we did, but we didn’t know which way was better. We felt – keep the wife happy. CAS: You’re sort of caught between the devil and the deep blue sea. You’ve got to respect your resident but you’ve also got to respect your relatives as such…had we rung the daughter and said this is what’s happened, we may have broken that contact with her as such. We sort of had to be careful with that.
Furthermore, support for this priority competition claim manifests in an interview discussion about where (a carer) perceived herself ‘in the working relationship’: C3: (ii): When I say that the personal carers are on the bottom of the heap, in a way in the way things go I think first of all we have our relatives . Well to us first of all, I think we have to answer to first of all the relatives to a certain extent, then management. Well no, probably the right way to go about it is the team leader, then management…But I think the relatives, we’re answering to the relatives just as much as management. I think management should be coming first because the relatives come in and want sort of , I’m not saying all of them only a few really, some of their expectations are unreasonable…
In this personal carer’s view of her working life, whilst the priority of care is proposed by others to be the resident ‘first and foremost’, a reality is that the carer ‘answer(s) to ‘first of all..our relatives’, the ‘team leader’ (nurse), ‘management’. Whilst ‘we (carers) don’t answer to (the doctor)’ nor in cases does the carer necessarily answer first and foremost to the resident. The view that care providers’ weigh up the best interests of the resident against the best interest of the family and self is influenced by their awareness of the legal implications about informing:
DGS:…we like to keep the family on our side and to give them as much information as they really require because you know they need certain information whether it is medical or whatever, because you want to keep them on your side, you don’t want litigation and you don’t want them to come back and attack you, because you didn’t give them the information.
In the context of truth-telling in practice (see: Residency) the concept of ‘relevance’ adds to the truth disclosed as what they (family) need to know and relevance as ‘what is really required…what they need’. Information shared is relevant when it meets legal requirements (or consequences). The relationship priority rests with the family rather than the resident. The nurse responds and supports the stronger, potentially more confronting family rather than the absent, less potentially confronting resident. Rather than an image of robust resident advocate, the nurse (and personal carer) emerge as answerable to the family. This threatening potentiality of the family concurred with another nurse’s Personal Journal entry. She wrote: EPD: DE: I have problems dealing with families wishes where you know they are thinking of themselves and not the resident. You have very little chance of being the residents advocate because you have litigation hanging over your head and when it comes down to the crunch and you have spoken out, there is no loyalty in the medical profession to back you up.
Keeping the family on the nurses’ side sets a combat-game metaphor for the care relationship (for further appreciation of a contested control see: Residency). Balancing the relationship in favour of the family’s side, the care provider reduces the likelihood of legal and personal confrontation. In this combat-game relationship the resident is silent. Furthermore, the interchange below amongst personal carers draws out and underscores a care ambiguity/priority: B2: But who’s feelings are they then I mean that you are looking after? Is it the resident or the family? What’s our situation, what are we meant,…I don’t know. Are you meant to look after the broader picture, like holistic family sort of thing? B2: Or is it just, as you mentioned, this is the person that you are looking after and so therefore your decision will be to look after that person… B4: And that could mean, having to look after the family too, to come back to look after that. B2: You know where is your obligation, sort of thing? B4: To stay sane is the first thing..
In this environment, the care priority is to ‘stay sane’ (B5) - to act so as to care for one’s own mental harmony. The carer (B2) expresses an ambiguity about the care priority. Whilst generally in this study carers and nurses maintain that the ‘resident is first priority’ both accede to the ‘family’s decision’ and for some nurses this is explained ‘to keep family onside’ to ‘avoid litigation’ (EPD).
This tension between the care provider’s relationship with the family whilst attempting to adhere to the resident as the focus of care was revealed and further defined by a nurse (nurse manager) who introduced the dynamic of an ‘antagonistic next of kin’ (and complementing earlier commentary by B2): BAN: (ii): (Resident) said …’I don’t want family to know’..when you’re talking about someone who has chest pain..I would probably choose to speak to the resident’s relatives but I would explain to them that I wasn’t supposed to ring them..but if you’ve got a significant next of kin who is antagonistic..then you’d have to question yourself about what you’re doing with information.. … AT: If it was a hostile relationship.. BAN: I’d probably record it in their (resident’s) notes and continue to monitor to a very close stage as opposed to inform…
Elsewhere, in another Personal Journal, a carer wrote (in response to the Nurse’s Story-Relative of a patient rings up): D2: DE: Yes! This does happen. What can you do…it’s their request you should acknowledge it and respect that...and they don’t want the patient to know I wouldn’t want to jeopardize my position and their relationship.
The carer here is reflecting in her Personal Journal on the Nurse’s Story: Poor Old Gilly. Gilly’s wife asks that the doctors not tell her husband he has secondary cancer. He knows he has a primary disease. He knows half the truth. The carer expresses the view that this half-truth request is tolerable. Full disclosure is trumped by the spouse-resident ‘relationship’ and the carer’s ‘position’. The ‘resident as priority’ on the one hand, competes with the workers sense of work responsibility whilst on the other hand, envisages the resident as a member of a collective rather than as an individual. 5.5
Trusting Relationship
Not all relationships are based on trust, but trust cannot exist outside a relationship. That is, trust resides within the relationship. Before trust can develop within any relationship between the resident, the resident’s family and the health care providers, they need to get to know each other. 5.5.1
Residents’ trust
The resident is perceived to trust unquestioning by reflecting on a nurse’s story: ‘Relative rings up’, a carer wrote in her journal: A2: DE: I myself feel I have to gain the confidence of the resident .. their life is more with the nursing staff then their own families. We have to gain and hold on to the confidents that resident puts in us, because we are the ones
that know their fears and feel their fears. So I personally will always think of the resident first. So that is how I look at truth-telling.
As understood by this personal carer, the in-care relationship generates the resident’s trust in the carer who ‘knows’ what the resident thinks and ‘knows’ what the resident feels. Like many others in this study, the carer weighs the resident’s incare life more heavily than the resident’s family life. Over time, a trust is developed with the resident. As with the personal carer above, in time the resident trusts the carer: B2: On whether you are going to tell the truth or not, on how well you know.. B3: Or how to couch it.. B5: Its to build up trust and confidence in you that you build up with residents to, you have got to build that up with them. B2: You just can’t go in and make a decision with out knowing that person can you? You just can’t. B5: It takes time to build up. B2: Depending on how much time you spend with the person.
The telling of the truth, how to ‘couch’ (B3) the truth is always relationship dependent. The relationship is the place for ‘knowing’ the resident and, is the basis for determining what to say or what not to say and how to tell. A relationship perceived by the carer to be one in which the resident trusts the care provider requires time. The trust in the personal carer-resident relationship is understood to stem from the resident’s ‘dependence’ on the carer as it shifts away from any trust-dependence on the family: B2: (ii): (Residents) become so dependent upon us, their trust comes with us, not their family…(Residents) depend on us, if they’re scared they look for us, if they’re sick they look for us..confused they look for us…we’re the ones that are there for them. Their families are no longer there so they (residents) change the dependency view from the family to us.
5.5.2
Residents’ know who to trust
In the personal carer’s experience not only does the resident trust implicitly, but the resident is able to determine, is aware of, who can be trusted: D1: …and they (residents) know if they (care provider) are going to tell them a pile of bull shit.. (T)hey'll pick out the ones that they know they will get the truth from…(S)omebody wants you to get something for them. "Oh yeah, I'll get it later" and that's it…but never getting it. Have no intention of getting it. To me that's a lie…(T)hey pick out the one's now as to who...who's reliable, who they can believe. It goes on from there. They form a trust don't they?
The resident is perceived to have to navigate through care provider ‘bullshit’, trawling for truth-tellers. Carer providers that can be trusted (that is, reliable and believable) are those that do as they say they will do, explain why they cannot and do not fob residents off with false promises or claims. That is, the trusted care provider is expected to do something. The personal carer suggests that residents know who is reliable and believable (trustworthy) and seek them out from amongst those who are not. Research data from carers, nurses and residents will establish that residents have an awareness. The personal carer here states that this awareness extends into knowing when they, the resident, are being served ‘a pile of bullshit’. 5.5.3
Family’s trust
Additionally, the resident’s family is perceived to trust. That resident’s trust is identified by personal carers and family’s trust is identified by the nurses as being predicated on how each care provider defines her/himself and each other. (For data and analysis of how care providers describe their and each other’s role see: Role). CAH: ..(T)here is some relatives that you would really bond with through their relative that’s in care…so then you can sit and talk with these people and then you don’t enter lying business, I don’t think… CPJ: It comes down to building the relationship with trust, doesn’t it? CAH: Yeah CPJ: …I mean there are relatives that you could be really open with you could tell the absolute truth to but there are others that no matter what you say they twist your words…
That is, CPJ: (ii): (S)ome people don’t always listen to what you say, they listen but interpret it in a different way.
Nurse-relative (resident’s family) relationships are formed over time, firstly from experience and then ‘what is said’, ‘how they react’, ‘their expectations’. The relatives engage at a ‘personal level’ (C2), going ‘out of their way’ to seek counsel with the nurse as a ‘special’ family figure. At this level of involvement, ‘gauging’, not lying, is understood. The carer dwells on ‘what to say’ and ‘how to say it’. Whilst the nurses understand that the family trusts them, and they trust the family that they interact with, trust in the relationship can be lost when truth-telling in practice fails. DGS: …The other thing you mention before about truth-telling is relevant.. I think the bottom line of all this too is that we like to keep the family on our side and to give them as much information as they really require.. because you want to keep them on your side, you don’t want litigation and you don’t want them to come back and attack you, because you didn’t give them the information.
DJJ: You don’t, you want them to be able to trust us..and if we don’t tell something they need to know and they find out elsewhere…(T)he families also need to trust us .. because if you have got a distrusting family then it will lead into a situation where things are sort of constantly questioned..and you know you sort of have to do a lot of work at that point if some things curbed where they have not got the story or someone has decided it’s best not to tell something …
Evidencing a limit to knowing (see later in this section) this nurse manager (DJJ) and a colleague reflect on family ‘come back’ that emerges when what the family ‘want to know’ fails to agree with the nurses’ ‘gauging’ of ‘what they (family) need to know’. In this passage above, a resident exists that presents the nurses with this conflict between nurse assessed need and resident determined want. Of note is the nurse manager’s critique: ‘if some things curbed where they (family) have not got the full story or someone has decided its best not to tell something’ results in ‘a lot of work’ on the nurses part when the ‘distrusting family’ call communication into ‘question’ and there is ‘concern’. The nurses risk getting the need analysis wrong, fail to ‘know’ (gauge correctly) and forfeit trust as a consequence. 5.5.4
Trust as a belief
Trust is further understood to mean a belief by the resident’s family that the resident is in good care: ANL: See they (family) walk out and go home. (Family) want to know, they want to know, and see like, (residents) are OK – that these people that they love dearly are going to be OK. They (family) know that there is a Team Leader, not just myself, that’s how it works. They feel confident that they are going to be OK…
Finally, the concept trust revealed itself in a journal entry: A8: DE: We have one resident Mrs (Toniolo) if her daughter isn’t there on time she starts to worry. She starts to think her daughter has had an accident in her car or on the road somewhere…Once I had to ring her to see if she was alright and Mrs (Toniolo) had forgotten her daughter wasn’t coming up .. (O)n a different day I just told her she had rung up and said she was running late then told her daughter what I did so we both get our story straight. (Chiara’s) the daughter was pleased that I did that. We need to have trust from our resident because if they don’t trust us and also rely on us for our honesty or white lies that helps them.
Deception, with the resident’s daughter’s complicity, is a reasonable response to avoid resident ‘worry’. Trust, in this sense, is understood as belief.
5.5.5
Trusting relationship: Resident’s perceptions ANL: (ii): Truth always has a funny way of coming out eventually and to have not told it, how do you think they’re going to react once you’ve told them an untruth?
Agreeing with the nurse (team leader) above and in contrast to understanding truth as hurtful, a group of residents said: B1r: Well like B2r said, I wouldn’t like my family to know that I have got something wrong and ..when you go home to visit and there are friends there, they might be telling them that and you don’t know about it. And then somebody just lets something drop out, and say "Oh, didn’t she tell you?". I would rather be told. B3r: It would be very hurtful. B2r: Yes B3r: For your own piece of mind be told that, that you have been told and therefore I still accept that the truth to be told is better than ignorance…
In contrast to the understanding that truth-telling is hurtful, residents consider nondisclosure as ‘hurtful’. Additionally, this group recognise that there is a risk that closed or suspicious awareness may slip into an open awareness, the consequence of this being the ‘hurt’ they would experience knowing that they had not been openly dealt with. The residents continued: AT: …(T)his reminds me of how it is often understood by others that ‘the truth can be painful’. The painful truth…. B1r: So can ignorance be painful when you find out later that… B3r: It’s more hard for then, to be told something that you should have been told long ago.
Contrary to the understanding that telling a truth can be painful, the residents’ view the ‘pain’ of closed awareness as superior. Easier, they contend, to disclose a truth perceived to be painful than to be exposed at a later moment in time. An awareness shift at some other moment in time results in the residents’ ‘hurt’ as a consequence of a misguided trust and the denial of self control. Furthermore, a resident expressed the view that knowing the truth conveys trust within the relationship: AT: For you what is it about knowing the truth that’s important, what is it about this ‘complete truth’ that is vital? E2r: Well, you know that they trust you to be told the truth. AT: They trust you? E2r: Yes, they trust you to tell you the truth about themselves, about you.
Within this relationship that is grounded on trust, the resident expresses her understanding that this means communicating openly. Openness conveys to her that the significant other trusts – has fidere in her, capable of accepting and comprehending what is to be conveyed. The resident continued:
E2r: Yes, it makes you feel.... my husband, he told me he’d given up smoking and when they cleaned the house out they found cigarettes everywhere, hidden away and they just told me as a matter of fact just a week ago. The sister in law let it slip. AT: So this kind of complete truth is obviously very important in relationships and very important in family relationship? E2r: Between husband and wife, very important
The resident expects that those in relationship with her and particularly those considered intimate will tell her the truth. Truthful disclosure in such circumstance is highly regarded. Finally, the resident said: E2r:…. See that’s very upsetting for me to find that out about him, because we had 42 years…
The resident’s understanding associates truth-telling in a symbiotic relationship with trust and the hurt consequent on the discovery of non-disclosure. Discovery that openness has not prevailed within the intimate and lengthy relationship creates an inner dialogue: ‘I trusted you, you have lied to me, been untruthful to me…you failed to trust me with your disclosure, you bring into question our mutual respect for each other…I am hurt’. The group of residents at A held to the view that an honest interaction is essential for the residents to have ‘confidence’ in and be ‘trusting’ of the staff. In a follow-up interview, the researcher asked a resident to ‘expand on..being confident and being able to trust (staff)…’. The resident answered: A1r:… When you come into a nursing home you tend to find out which ones are…sympathetic toward you or on the same wavelength.
Elsewhere, a E resident sought insight about the residential aged care facility’s staff from fellow ‘inmates’. She said: E1r: They’re inmates and they tell me what’s wrong with the place. How this one doesn’t do this and that one doesn’t do that. And they’ve been here for much longer than I have.
A carer concurred, saying: D1: …and they (resident) know if they (carer) are going to tell them (resident) a pile of bull shit… they'll pick out the ones that they know they will get the truth from….
Experiences with staff in the care facility allow the resident to determine who is trustworthy.
5.6
Hope
Hope and truth-telling are companions. Truth-telling influences the shape and maintenance of hope. Knowing the resident’s (and resident’s family) capacity for coping, being told the truth and therefore knowing the resident’s or family’s best interests is fundamental in the care providers’ determinations about how much to tell. The breadth and depth of this knowing residents or resident’s family who are then judged to have hope (or degrees of hope) of a kind, means care providers will disclose information accordingly. 5.6.1
Truth-telling and hope
Personal carers and a facility’s physiotherapist discussed the presence of hope maintenance and the communicative strategy the physiotherapist employed: B3: (A resident) down in A-wing with a stroke and everyday and every time I see him: "When am I going to walk, when are you bringing me an electric wheelchair, you know? And his wife reinforces that "Thanks to the physio' we'll have you walking"… B3: (I)n this particular situation we try the soft touch and just you know, tippy-toeing around the outside and.. now this is two years plus.. AT: When you say “tippy-toe around the outside”.. B3: Well, when he and his wife go on about: “When will I be walking again, when can I drive the car” – totally unrealistic expectations, then I’ll say, I’ll try to bring them back a little bit, without saying you will never walk again, I’ll say: “It is highly unlikely..Let’s focus on what you can do” – and try to be positive in a way without dwelling on the negative, hard cold facts.…
Carers in conversation with a physiotherapist distinguish between hope that is positive and hope that is negative. Positive or realistic hope dwells on the achievable as assessed by the practitioner. Hope of this kind is current and clinically future orientated. Negative or unrealistic hope is self deceptive and blocks progress toward realistic outcomes. Hope of this kind dwells on a cure – a return to the past person self. Clinical hope (hope that is positive, partial and realistic) grounds itself in the carer’s knowledge as reality whereas resident hope (negative, unachievable and complete) grounds itself in the resident/relative’s reality. The physiotherapist (B3) above, further examined her perceptions about hope in her Personal Journal: B3: DE: I was doing some shoulder and leg exercises with a resident who is almost 90..The overall picture for mobilising this lady is fairly bleak.. She continually makes comments like: “When I’m walking around again..” and “my arm should be improving by now with all this exercise”. It is very difficult to be practical, allow room for hope, but ‘not lead them up the garden path’. The relatives also put a lot of expectation and subtle pressure on the resident. When I explained our goal of standing transfers and maybe a few steps with a Rollater, as opposed to their expectation of (Mrs A) being “back to where she was before her fall”..
Both the resident and carer have expectations about what can, in care, be hopefully achieved. The resident’s hope is (in this case) an ‘…expectation…’ to achieve a totality, a completeness of health. The physiotherapist’s hope is (in this case) a ‘goal’. That is, an achievable possibility, an achievable partiality but a less than perfect or complete healthiness. As is evidenced in this section the physiotherapist’s hope is goal focused – that is, an achievable end that is, by extrapolation, realistic and useful (practical). The carer and physiotherapist aim to preserve hope of this kind. She continued: B3: Being sensible is..hope, its got to be realistic and have goals. B3: (ii): But at the same time, you don’t want to be seen to have given up on them and not be doing anything at all.
Hope – clinical hope, carer hope, is characterised by communication that conveys what can be achieved in the circumstances as ‘gauged’ by the carer, over time. The physiotherapist attempts to promote true hope by how and what she says - in the process ‘bring(ing) them back’ by toning down expectation. The physiotherapist articulates hope in response to her role-relationship, understood by the dictum ‘above all do good, do no harm’. A nurse manager and nurses elsewhere concur with the physiotherapist’s strategy: CPJ: (W)e don’t want people to lose hope. CAS: No. CPJ: But we probably do a few lies of omission? CAH: Hmmm. CPJ: I mean some of the residents, you would never say: “Well, you are dying now… CAS: Hmmm. CPJ: …you were to sort of say… CAS: You skip around it sort of thing. CPJ: You do.
Just as the physiotherapist’s group discussed the communicative strategy of hope maintenance and anxiety reduction through ‘tippy-toeing around the outside..’ the nurse manager’s group in the context of death discussion and hope resort to ‘lies of omission’ whereby they ‘skip around it sort of thing’. An additional meaning of ‘skip around it sort of thing’ in the context of truth-telling and hope emerged within the complementary data from a nurse manager’s personal journal and a follow-up interview. In the personal journal the nurse wrote: BAN: DE: There is a difference between factual reporting and filtering. Filtering is not bold cold facts but it is not deception either, it is staggering over time of what is necessary.
Asked to clarify her meaning of filtering and hard cold facts in the interview, the nurse revealed: BAN: (ii): (Y)ou’ve got someone with pneumonia who’s totally dependent and likely to die but you’ve got a son who’s clearly not accepting..So what you tend to say is ‘She (resident) has a chest infection, she’s deteriorating, she’s not eating’…without saying she has pneumonia and she’ll die in about a weeks time.. (Our) medical knowledge that that person (resident) has no hope but because that person (relative) isn’t coping you give it in a milder form.. even though we ..know that she’s going to die, in our minds.
Furthermore, the nurse added: (Y)ou chose to use another word..People say to you ‘mild heart turn’ is in fact a heart attack. There is a difference in terminology. One would terrify a person, one wouldn’t…So there is a difference in terminology we are choosing to use. You’re hoping to protect another person’s feelings by doing it…
The nurse manager’s intent is to protect the other under the guise of benevolent euphemisms. What is risked in the use of ‘different terminology’ is the very real possibility of complete misunderstanding. However, she does not recognise this in the context of hope and euphemisms (‘different terminology’) when the son asks ‘How is she today?, Has she eaten?’: (Y)ou say ‘Well, she’s not swollen, she’s still got the chest infection’..and you tell all the other staff members to say the same thing so that no-one is giving hope…Being straight out and saying ‘She’s (resident’s) got pneumonia and she’s likely to die in about two weeks’ isn’t actually helping that other (relative) person.
Summing up the use of ‘different terminology’: I still think it’s all truth…You’re still choosing to use words that are far more acceptable to increasing another person’s ability to cope. You’re filtering information through so that people can actually tolerate what you’re saying and that takes a certain degree of skill and care on the part of the practitioner
5.6.2
Hope: Real and false
Care providers’ data provided insights into hope. Understanding hope allows for conclusions to be drawn on how telling another the truth about their circumstance is operationalised. The researcher asked ‘I want to go back to (CAS) - you said there are some relatives that “hang on to that last thread of hope” CAS: Well once again it depends on the person and you know choice of words again it comes down to that. It is hard, I mean you have just got to say there really is no miracle, that you try and explain that the end is going happen as such… CAH: I think we are quite truthful when that happens as well. I was thinking about it because we always stress just how elderly Mum or Dad might be…nobody is going to expect them to live forever and that’s the way I handle it. I say well I mean Mum or Dad are very very old… CAS: That’s right, yes… CAH: …their heart is very very weak, so you are not telling lies. CPJ: No CAH: …And you’re not stopping them from having any other sort of treatment…hope, but trying to be realistic.
The realistic hope for the family has a focus on current circumstances of senility – frail biology, the irreversible prognosis. It also emphasises the ‘good’ – good care and treatment (consistent with the previous nurse, ANL), memories of a good life and a good person. Relatives self deceive, premised, in the carer’s view, on hope. C3: I was at his case conference actually and they said: “We know he has got brain damage”; the doctor said: “He has got brain damage” and (CPJ) said; “Yes he has”, and they (family) said: “Yes, but that might get better” .. C2: That’s truth. C3: Truth, yes she told them the exact truth, they (nurse manager and doctor) told them (family) the truth of what he’s like… the other day while he was kicking and carrying on..(S)he (spouse) said: “Oh no” she said, “he is just getting exercise” and she said: “You give it too them..” (carer striking her hand into her fist)
Even when the ‘exact truth’ of an irreversible brain injury is communicated, the relatives are believed to deny this and hang on to hope – a questionable hope. Nurses elsewhere concur: DNB: You also get the situation where the relative won’t come to terms with the fact that the parent is deteriorating and they seem to be living in a sweet little bubble where they think that Mum is going to live forever.. I mean you can’t burst their bubble but by the same token you have got to make sure that they don’t do things that are quite so detrimental to our relative. DGS: So they (relatives) don’t get false hope.... DNB: Yes, well they have all of they....buoyed up with all this false hope and yet.. And it’s very difficult…
Relatives’ hope is a hope for a cure. Carers, hope as ‘realistic hope’ is based on (a) clinical knowledge (clinical knowing) and (b) the now-person resident. A ‘sweet little bubble’ indicates a reality that in the carer’s view is unreal, false, out-of-touch with actuality. That relatives demonstrate this ‘false hope’ must be set against carer data that maintain and support the ‘vision splendid’ (see previous data about ‘nowperson/past-person’ resident in this section and see also: Residency). That is, the carers’ understanding of filtering the truth – not disclosing information that is of no concern or avoiding family worry risks failing to allow the family to know the reality, to know the now person resident. That is, keeps the ‘bubble’ afloat. 5.6.3
Hope, lies, denial C1: (ii):…OK, once they’re (resident) in here I know we exaggerate the truth about them going out (leaving the nursing home)… C3(DE): Sometimes they (resident) are told when they arrive they (resident) can go home when they can walk again, toilet themselves, etc. Often they accept this as it gives them hope and therefore they settle better and have a goal – they are usually easier for us to care for as they try harder. Usually, in time, they accept they will be staying.
In a follow-up interview when asked ‘Who gives them this hope?’, C3 replied: C3: (ii): Usually the relatives. So that they’ll (resident/relative) come quietly so to speak. …It’s false hope really…(The family) tell them they can go home so that they’ll come. AT: How does that impact on you? C3: If they’ve got the hope that they’ve got something to work for to go home, they’ll do their darndest to help us help them… AT: You said it’s ‘false hope’. Are you going to change it? C3: No, I wouldn’t. It wouldn’t be up to me..it’s not upto us go into something like that with them.
This isn’t the afore established realistic hope or ‘achievable hope’ but false hope that pretends, anaesthetises. Hope of this kind achieves compliance to care and maintains ward orderliness. This type of hope stands in contrast to realistic, clinical hope with achievable goals. Whilst the carer (C3) recognises the creation of ‘false hope’ she relies on her role understanding (see: Role) not to tell the truth – a truth that might otherwise make the ‘hands on’ care problematic. However, a carer reflected in her personal journal: B1:DE: In my normal working day I sometimes find myself telling residents what they want to hear or what will make them feel at ease instead of the truth about a situation. …(T)o simply say to someone that we are just doing the exercises to ensure your muscles don’t seize up altogether, then there would be no incentive to keep doing the exercises. Walking again is a far more wanted goal.. (T)here are occasions where not telling the truth can
achieve certain goals (but) there have been situations where I have disagreed with family members not telling the truth to a resident.
To clarify, the carer spoke of this personal journal entry in her follow-up interview: B1: (ii): (I)f you put it a different way and say instead of the truth which is what you’re doing it for, then they’ll do it so they’re getting the best out of what we’re doing as well.
Truth-telling is clearly understood to find meaning in consequences- ‘goals’ (telos) and rewards (‘incentives’). The carer decides which goals/rewards are in the resident’s best interests. In this case, hope (although false) of walking is perceived to be paramount above the realistic, clinical hope of range-of-movement. ‘Not telling the truth’ premised on the best interest of the resident – achieving ‘a far more wanted goal’, emphasises the role dimension of the personal carer. This role dimension is the personal carer’s emphasis that she must do something rather than be with the resident (see: Role). Finally, within the data emerged an association between hope and a state of denial: D1: …(H)e's in denial I think… You see, as far as he is concerned she should just take this black, syrupy horrible natural stuff and she's going to be walking and she’s going to get all her mental faculties back… I said "Have you ever seen her CAT scan? She's not going to change"…. … D2: What was his reaction? D1: “Yeah, yeah I understand that"…These are his words "I understand that but I just feel anything that could be of help its up to me to try it"…(H)e said "Even just 1% is better than nothing"….I just felt he's just in total denial and its almost verging on abuse….
The carer understands that the relative is in denial and holding onto hope. This denial-hope coupling adds to the relative’s truth seeking behaviour and subsequent questioning of the nurses’ veracity. The carer concurs that the relative in the face of ‘exact truth’ (diagnosis) maintains a ‘glimmer of hope’. Similarly, the denial-hope coupling was described by a nurse (manager) as part of the care circumstance that the nurse ‘works within’: BAN: (ii): (I)f you’ve got someone like we have at the moment, full of hope and full of cancer of the oesophagus and ..the mouth.(He isn’t ready for) the truth about his condition so he’s not really at a level..it would take away his hope, even though it’s unrealistic, it would take away hope… (T)hey are told the truth, and this has been the case (here) and is in most cases that is the truth. So when they (resident) choose not to accept the truth, that’s their level of tolerance, so they don’t want to know about it and that’s fine…
In the understanding above, the nurse identifies the denial of the ‘truth’ premised on ‘hope’ maintenance so describing the mutual pretence that she and the resident ‘work within’. Further to the denial-hope coupling, a colleague recounts in her personal journal her own experience that connects denial with the maintenance of hope over time: B2: DE: ..I didn’t have the desire to tell Dad he would never walk in this life again, as it would achieve nothing and leave Dad with no goal except to die…Instead, I agreed we would make a start and would massage Dad’s legs… When Dad asked the nurse: “Do you think I will walk today?” she replied “No, not today, you may have to wait a couple of weeks”. No one ever denied Dad was dying or lied when he understood, but those last two weeks when Dad was not aware of what was really happening he was given care, love, dignity and a tiny bit of hope though he knew this was the end. I am glad I lied and grateful to those health care folk who lied, too.
This hope-game gives a ‘tiny bit of hope’ for a positive sense of self and the carer (daughter) acknowledges her own denial – an inability to ‘face…loss and disappointment’. Therefore, whilst this ‘tiny bit of hope’ is suggested as beneficial to the father, it is false hope that placates the carer’s (daughter’s) emotions. The carer gives meaning to truth-telling as weighed against ‘goals’. In this case, from the personal carer’s understanding, false hope is preferable and justifiable. False hope, however, is not hope that is ‘…sensible and realistic…’ but rather a mutual pretence. The personal carer’s experience and the conviction of the hopegame’s pretence was underscored as she revealed: B2: (ii): (He) had no problem with dying..you could always be honest and say ‘Yes, Dad, you’re going to die’ and we’d talk about it. (B)ut as for ‘Do you think I’ll walk again?’. So why kick away the last thing a person’s got so you can say you’ve told them the truth? What good would it do?
5.6.4
Hope: Resident’s perceptions
Even though the resident (B1r) questions the veracity of the information, she seeks clarification premised on hope for a cure. B1r: Well if I read something in the paper about, that they were doing wonderful things with arthritis, I would then seek to gain some information from somebody if my case could be considered suitable…. read all the bits and pieces and listen to the television articles, not that they are all true, but anyway, take them with a pinch of salt, there might be something come out one day that can cure us, take Parkinson's,…. So things change don’t they, as time goes on?
Media sources are perceived to be of some use particularly presenting information that fosters hope. Seeking information from media or text creates the potential for a
tension between what is thought to be true and what is known to be true. Resident knowledge (what is known or thought to be true) may differ from carer-nurse-doctor knowledge (what is known or thought to be true). Even though the resident B1r questions the veracity of the information, she seeks clarification premised on hope for a cure. The potential tension between resident knowledge and carer-nursedoctor knowledge extends into a like tension between resident’s hope and care provider’s hope perceptions. At interview, an idea this resident offered in the group discussion was that she sought ‘frankness’ rather than building up ‘hope’. Asked to clarify this she added: AT: (ii): …You understood truth-telling as being frank – about frankness…you would prefer this frankness rather than building up your hope… B1r: Yes, yes, I prefer a person to be frank with me. AT:…(I)n the face of it being depressing news… B1r: I’d rather be told..
Hope maintenance is not paramount even when the consequence of open disclosure (‘frankness’) about the resident’s illness or condition is potentially ‘depressing’. Seeking to be told the truth about her care circumstance, the resident here added, about hope: B1r: (ii): I occasionally ask the doctor if there’s any progress, any developments…he always says No’ and that’s the only hope I’ve got. Otherwise, I’m still unable to stand alone and walk. I can’t stand alone. AT: So, are you hopeful? B1r: …I’d like to be able to have more hope. But when I asked my GP before I came here, I said ‘Is there any chance of me getting better from this condition?’ He said ‘No -as a matter of fact you’ll probably get worse’. So I’ve had that to live with.
Again the resident’s understanding of hope is in the context of a cure. Recognising this is not to be her reality, the resident evidences resilience and accepts her incapacity in the company of clinical hope. A resident admits to being ‘appalled’ at hearing she had Parkinson’s Disease: B2r: ..I was appalled when I was told I had Parkinson's because I knew a couple of people who had Parkinson's and saw their cases as absolutely hopeless and thought I was being told that I had something absolutely hopeless. (A)nd I'd be like they were and absolutely finished and …It didn’t occur to me that the doctor shouldn’t have told me or anything or that I should have been protected from it. I feel that it that I wouldn’t want to be protected from the truth, I would want to know what the truth was. B3r: So would I.
In the case here, when a direct question is asked the resident expects an honest answer. Additionally, the resident at B, whilst ‘appalled’ and of a view that a diagnosis
of Parkinson’s disease was perceived ‘as absolutely hopeless’, the resident rejects protection. In a situation of potential misfortune, namely the diagnosis of Parkinson’s disease, the resident’s understanding contrasts to weighing disclosure against hope maintenance or a reactive anxiety, worry or hurt. Instead, she states she does not ‘want to be protected from the truth’. Equally, a C resident recounted the doctor’s disclosure about her Parkinson’s disease: C2r: (ii): (The doctor) said ‘You’ve got Parkinson’s disease, there’s no cure and it’ll get worse’…Well, I was pleased I knew…and yet he was saying there is no cure for it. But there is a lot they can do to help…But the truth was – I didn’t mind knowing what I had. … (I)t was most helpful to know what I had and the fact that there wasn’t a cure but help could be given.
The resident when told the truth – that her condition is incurable but there is hope about what can be done (‘do(ing) to help and ‘giv(ing) help’) is accepting of being told. As with her colleagues from other aged care facilities, the requirement for truthfulness outweighs any claims for protecting her from any perceived harm an incurable diagnosis might bring. What is important is openness that can also: C2r: (ii): Temper it….(Y)ou can tell the good news with the bad…
5.7
Guilt Time - Denial Time
Knowing the resident’s (and resident’s family’s) capacity for coping with being told the truth, and therefore knowing the resident’s or family’s best interests is fundamental in the care providers’ determinations about what to tell or what not to tell. The breadth and depth of this knowing residents or resident’s family who are then judged to be in denial and/or experiencing guilt means care providers will or will not tell, accordingly. 5.7.1
Guilt, denial and reality
A carer’s personal account gives meaning to the experience of guilt: C1: It’s like a trap when you have someone like that in a home and you maybe feel should we really have that person in a home, should we be looking after them ourselves, you know, yes, feel like it’s a trap. .. Because I felt the same way I looked after my Mum for four years because I refused to let her go into a hospital .. And I looked after her.. I was in a state of stress and, you know, trying to cope with Mum, trying to cope with work, trying to cope with the family, but I felt guilty when she.. had to go to hospital. I couldn’t handle it anymore and yeah I felt like as if I was trapped prior to having to go to hospital because she was my Mum.. then..I felt everything lift off my shoulders when she actually went into hospital…yeah I felt like as if I was in a trap.. And I think a lot of these relatives feel the same way.
And, DPJ: (ii): I mean there’s a lot of emotion involved..(family) could be feeling guilty about having them at the nursing home…
The personal carer perceives (and a nurse manager elsewhere concurred), from her own experience, a resident’s relatives deceive (‘lie’) themselves as a consequence of feeling trapped. Burdened by care responsibility, the family admit their relative into residential care. Whilst acting to do good for their spouse or parent, the family are relieved of the stress and this relief leaves them guilt ridden. In order to manage this guilt, the family see improvement where there is none, more hope where there is less. Another personal carer agrees and wrote in her Personal Journal, whilst reflecting on the Nurse’s Story: Relative of a patient rings up: B2: DE: … relatives are human and as such can be weighed down with guilt. Sometimes it can be easier for a relative to see no emotion from the resident because then at least they are not seeing sadness or despair.
Guilt ‘weighs down’ the relatives. The personal carer perceives guilt as a burdensome emotion that reduces the family’s capacity to ‘see’ the resident’s ‘emotion(s)’. The family’s guilt acts to shield what the carer can see and the family do not want to see. As such, guilt promotes denial of the resident’s true condition in residency, namely ‘sadness or despair’. Furthermore, a group of nurses understand the machinations of guilt and by its association with grief within the family as impacting on the relatives’ trust: CPJ: … I can give you a number of examples.. no matter what you said to the son, he would then go to someone else…..he would go around, like he was checking up on what you were saying. Almost like they don’t believe or trust your professional integrity. I mean that happens a fair bit too. .. CPJ:…I mean that’s something else when people first come in. There is this big, this huge grieving process that seems to go on… CAS: Some grieve the whole time… CPJ: That’s right, they never stop.. associated with that guilt and all this sort of stuff. And so then sometimes they hang on your every word, um, but then they don’t believe you anyway. So…
The family or family member doubting, trawling for truth, risks conflict and misunderstanding. This truth seeking was verified in an interview. CAH concurred with the experience saying: CAH: (ii): …(T)he relatives go from RN (registered nurse) to RN and then might come up to (CPJ) and we’ll say exactly the same thing…I would say that that would be guilt feelings …
The nurse added that in her experience: CAH: (ii): (T)hey go from RN to RN. Sometimes they will go to Personal Carers as well and therein lies a problem…
The resident’s relative’s grief and guilt associated with the placement of a spouse or family member into a nursing home is responsible for the truth validating behaviour. The truth that is disclosed by the nurse manager is verified and negotiated by the resident’s relative who is perceived to be self deceiving: denying the truth as a consequence of guilt, and also the care circumstance reality because of guilt and the afore described inflated hope. The carers’ understanding of denial, hope and guilt as experienced by the resident’s family emerges in the following group conversation: C3: …it is understandable that they can still remember them as they were more so than wanting to know the reality of what they are like now. But that reality that we.are dealing with… C2: The relatives lie to themselves too. C3: Yeah.
The family in denial deceives itself. Carers perceive that the family holds onto the memory of the resident as he/she was and is unable to confront the reality of the person that the resident has become. The group continued: C2: I mean you know, you’ve seen them (relative) and come in and say: “Isn’t Mum looking well today?”...I think you (they) tend to lie about things you (they) don’t want to accept.… it’s just like if I thought my father or mother were going to die…I don’t think I could accept it. I would probably lie (even though)..I could see they were getting worse..I think a lot of the relatives do that. They come in and they can’t really see, I mean like (Mike Wood’s) family…
A carer reflects that her own response in a like situation would mirror this denial and set up a situation of pretence. The personal carers continued: C3: And they have got him on resucs’ orders and he keeps getting resuscitated and they are making him live like that. ..(It’s a) denial. They want him to come home, I mean, all that is understandable but that poor man… … C1: …Its like a guilt thing I suppose with the family too… C2: Yeah they probably think that if they keep up the hope that there probably is if they don’t have the hope there it is gone, but the thing is…?
The family’s pretence of recovery in the face of the ‘truth’ is a function of both guilt and denial. This pretence is underpinned by hope as a cure. Carers understand that the resident’s family’s truth denial attempts to ease the family’s guilt. Hope further relieves this guilt. Guilt compounds the family’s denial of the ‘truth’. The carers revealed their communicative option: C2: … the mother the other day wouldn’t go on a holiday because she wants to be at home, if he comes home for when he comes home. Well that’s a lie because he won’t
ever go home. And yet you are standing in the room and feel like saying “Look wake up! He is not going to get any better”. But that is not our job to say that… AT: So what do you do? C3: We don’t say anything…
Complementing this in the context of denial, two carers in the E group, shared their perspective of a family, split over wanting to be informed of the resident’s ‘behaviours and changing health’. E 1 described a situation in which some family members ‘want to know’ and other family members ‘do not want to know’ about the behaviours of a resident. E 1 asked ’What do I do?’ and ‘What do I say?’ She said she ‘lies’ to those that do not accept the current behaviour and situation and in her view, do not want to know. In contrast, a fellow carer in the group said ‘I don’t lie’ and she told the family member who was unable to accept and doesn’t want to know, the exact behaviours of her mother. In response to this disclosure, the family member said: “Well, she will settle for me. She won’t do that for you”. The carers interpreted this response as ‘blaming for their mother’s behaviour’. 5.7.2
Truth-telling and guilt-denial
Whilst the analysis of truth-telling in practice occurs more completely in the section: Residency, in the context of guilt-denial what is disclosed occurs in accordance with the ‘easing’ of the burden of guilt and the harm of denial. In the context of truthtelling in practice: A2: (ii):..There’s the family that is carrying so much guilt because their parent is old and they’ve stuck them in a nursing home and they’re no longer looking after them and the guilt is really heavy. In that case you are inclined to tell them everything is all right. You’re doing that because emotionally that is helping them.
Therefore, DJJ: (Y)you have got to really sort of be fairly sort of delicate with what you tell them. I mean you certainly wouldn’t omit if they need to know, but again, you wouldn’t make them feel bad because you are trying to get them eased into the situation as well, because they are going through such an incredible period of guilt..
Therefore, as understood by the nurse manager, ‘guilt’ impacts on truth-telling in practice. The family’s guilt stems from the family’s questioning “Is this best” and feelings of “God! What relief”. That is, burdened by care responsibility the family admit their relative into residential care but question “Is this best”? Whilst acting for the best for a spouse or parent the family is relieved of the stress of caring -“God! What relief”. But this relief leaves them with guilt. Consistent with role and emphasis on harm minimization, omission creating half-truth disclosure is utilised.
Within DCI’s child minding analogy (see: Residency, and an earlier part of this section), it is this accompanying guilt (or discomfort that stems from allocating the care
of
the
child/resident
onto
another)
that
determines
what
another
(mother/relative) ‘need to know’: DCI: (ii): …(I)f she (mother) had any guilt about leaving the child..I guess this is the relatives too. If they’re feeling guilty..and we’re saying ‘Dads running amok…faecal smearing..’ that’s only going to increase their level of guilt…Why should we do that to them?…
Guilt emerges specifically as an element influencing the omission of the truth. Care providers here make determinations about the resident’s relative’s capacity for being informed. On that basis, information that is shared is released only when it is deemed not to add to another’s perceived emotional state. Truth-telling in practice presents as half-truths, that emphasise the ‘easing it along’. In this sense, truth-telling in practice also represents tempering the truth to protect the family from the burden of the ‘whole story truth’. (The entire interpretation and data-based analysis of truth-telling in practice is provided in the later section: Residency). Equally, the telling of the truth is weighed against the personal carer’s view about the ‘guilt’ a resident is perceived to have for being a personal care burden. Again, to the carer, doing no harm whilst promoting well-being, is considered more important than truth-telling: B2: (ii): The residents can blame themselves…(Resident thinks) ‘I was too much to look after, I was too hard (to care for at home)’…(T)hey’ve got guilt of ‘Geez, it probably was hard’ they’ve got the big guilt thing. ….(I)f you can’t uplift that person with telling the truth, what the hell is wrong with telling a bit of a lie and uplifting that way? There’s no harm in that.. tell the truth unless there’s benefit. I mean you weigh up the benefit against you know, if it’s going to harm them.
5.7.3
Consequence of truth-telling and guilt-denial
However, in the context of reducing the burden of guilt and the harm of denial, a nurse proposed: DCI: …are we saying we are protecting the family by not telling then that Mum strips off naked etc….we are also protecting ourselves…we are saying we are not caring for them…
.. However, she continued DCI: I personally don’t see that as a protecting us …
… …if it is not going to make them feel better and it’s not going to make any difference to the resident, then why bother?.. And there is this huge guilt thing that everybody who puts a person into a place like this has got to cope with and I just don’t feel that that sort of information is going to make their situation any easier for them to cope with.
Guilt influences truth-telling in practice. Since guilt is perceived to be an additional burden experienced by the family, the nurses share information contingent upon burden reduction. The burden of guilt is enough, and nurses do not want to add, as expressed by EPD, ‘the burden of truth’. The information shared and the information omitted and withheld both favours the ‘vision splendid’ and in so doing, lightens the guilt load. However, truth-telling in practice understood as informing about some events and not about others, risks being understood by family as perverted protection. That is, care providers protecting themselves (see also data and discussion this section: Knowing and truth-telling). This idea of the family’s perception about the care provider ‘protecting (them)selves’ was put to DCI at interview. Though in the group interview she said ‘I personally don’t see that as a protecting us’ the nurse did however concede that: DCI: (ii): …I do think there may be an element of that. I do think that’s part of what we do…If I was to say to (the) mother ‘You’re child ran amok…’ I might be saying I’m not very good at this..(S)he might also feel..have strong reservations about leaving the child with me again because I don’t know how to look after her…(Y)ou would have to tell family about an incident …Mum pulled out of bed by another resident, but you don’t have to tell (about) faecal smearing and if you do…they could think ‘Where were you?
5.7.4
Managing disclosure and guilt
In a group discussion that included the nurse (team leader) speaking as the next-ofkin amongst the carers of the nurse’s mother (resident) a way forward was suggested to resolve the managing of ‘what you say and what you don’t’ (DJJ). In the perceived context of a resident’s family’s denial, the group discussion unfolded: ANL: ..There is something you’ve got to understand. My Mums here…we’ve had ‘em for our lives that’s why you must listen to family, I don’t care what you say... A2:..(W)e listen but sometimes the rellies are in this state of denial and.. ANL: Listen to that because then you can help them..
.. The nurse (team leader) accepts that family may be in denial. As a practitioner, this nurse manages truth-telling as previously described, in the Section: Guilt and truthtelling in practice. As the next-of-kin in this case, rather than in her role as a care provider, she asks that denial, which places the family in the false reality of the pastperson, not be an impediment to openness. Rather, a solution is offered. The nurse
proposes that family ought to be ‘help(ed)’. Openness that brings an awareness of the now-person resident is possible through carefully managing the family’s denial. 5.8
Limited Knowing
How the care providers operationalise truth-telling in practice is determined by the way they describe the relationship as a site for knowing the other (resident or family). Through knowing, the care providers make determinations about the what and the how and the why of telling the truth. As this is the case, their discussions about and personal journal data describing this knowing and limits to this knowing add to the overall comprehension of truth-telling in residential aged care. The care provider’s views that knowing may be less than sure or certain suggest that judgements about truth-telling and what family (or resident) need to know, don’t need to know, how much they need and what they want will also be compromised. 5.8.1
Vagaries of knowing the family and resident
The relationship building and daily role responsibility brings consequences and highlights the care providers’ perceptions about who knows who best: CAS: (ii): The (relatives) tend to have a lot more contact with the personal carers because the personal carers are with the residents a lot more than we are. I mean we’re sitting down doing paperwork, giving out pills, and we rely on them (carers) a lot for information about residents as such.. So they (relatives) see them (carers) a lot more, they tend to talk a lot more to the personal carers. …So they (resident’s relatives) tend to think that the team leaders, because we’re ‘up there’, we mightn’t give them the truth, the total truth – you know what I mean…
As per the previous section (see Relationship: The family) a nurse acknowledges that care provider role(s) impact on relationship building with residents and resident’s relatives. However, carers recognise that ‘you..build up a relationship but not with everyone. ‘There is (sic) certain ones’ and relationships can be ‘good’ but ‘sometimes…special’. Therefore, the knowing-the-resident that resides within the relationship varies according to the breadth and depth of the relationship. This range of knowing spans the range of relationship – from ‘not with everyone’ to ‘good’ to ‘special’ and for the nurse above (CAS) and a nurse (ANL) elsewhere, the personal carers’ knowing and relationship with the resident is ‘more’ or a ‘little bit better’ than the nurse.
By way of contrast, but not unlike the nurse’s (CAS) sense of being ‘up there’ – in some manner separate from the resident’s relative and resident, nurses knowing the family and resident as ‘total strangers’ makes ‘gauging’ ‘harder’: DJJ: … I guess if you know the people involved reasonably well, I think it is harder when you are dealing with total strangers because you are not really sure what they can take or otherwise, but if you know the family and you know the resident involved then I guess you tend to gauge it…
In the context of truth-telling in practice, knowing the family and the resident ‘reasonably well’ facilitates the nurses decision making about truth disclosure (Td), ‘what they need to know’ and truth omission (To), ‘what they don’t need to know’. Furthermore, a personal carer cautioned about the very knowing she understood to be a part of her own practice. In a follow-up interview, the carer was asked to clarify her views about a family’s request (and the subsequent actions) not to disclose to a German resident (with dementia) that her husband had died: B1: (ii): (S)he (German lady) may not have been able to communicate..but the little smile, if you’d watched that, you’d know that she knew….how do we know, we don’t know so to assume something is not right. We were assuming, the family were assuming..I’m probably assuming too, but only because she had the signs that she knew he (husband) was there (visited), that she knew who he was..
5.8.2
We don’t know them
Recognising the non-universal nature of the close bond shared between the carer and the resident’s family impacts on the evolution of knowing the family and, by extension, knowing the resident: D3: We become very close with both the resident and the family…
However, in other care circumstances: D2: Or there are some that they keep their distance from you. They don’t want, you know, they only want you to… D1: We’re only there to do… D2: …that duty D1: To do for that family member, not to get an emotional attachment, not to form any bond…
With the consequence that: D2: …so we don’t...(share any personal life).
Since knowing either the resident or the resident’s family is conditional upon the relationship shared between the care provider and the other, conditions do exist in which the knowing is limited. When a resident’s family perceives the personal carer as a ‘doer’, keeping an emotional distance free from any ‘attachment’ or ‘bond’ so that no ‘personal life’ is ‘shared’ by the personal carers, the relationship’s breadth and depth is compromised. By extension, so then also is compromised the carers’
‘knowing’ the resident’s family. Further compromised is the carers’ capacity to know what is in the resident’s family’s best interest and potentially their capacity for a deeper insight into the resident likes and dislikes. A nurse (team leader) within a group of carers, considered the ‘problems’ associated with the resident’s ‘two families’ and carers’ making assumptions about knowing: ANL: And the thing you’ve got to realise they have two families – they have us.. but they have visiting their own family and this is where you run into problems..are we all agreed on this? AT: What are some of those problems? ANL: Well, you talk about lying, how do you tell a person whose fine really great and then they they’re visited by their daughter who upsets them causes them anxiety or their husband and..this is where you very careful when you’re invading on their relationships that may always have bigoted and fought or had little niggles at each other that’s normal to them..
The nurse (team leader) critically appraises the tension perceived to exist between the resident as a member of a biological family and the resident as a member of an institutional family. Her perception concurs with the view that questions care providers ‘know(ing) what (a) wife and the husband’s relationship have been..’ (C2) and that there are ‘limits to knowledge about a family’s history’ (CPJ). She continued: ..we have to be very careful (because we are) very judgemental because these people have their wife or their husband or their sister or mother or father or son and my opinion they should be before us they should be considered, because as I said, they’ve (family) got years and years and years of loving with Mum, you know what I’m saying (said to group) but we come on and we’re very judgemental…
Additionally, the nurse in this group underscores the risk care providers face when making judgements about family dynamics that the carer provider knows nothing about. However, it is not the resident that ‘should be before’ (ANL, above) – sought for expression of desires and wishes. Rather, it is the resident’s family ahead of the care provider – particularly when the care provider is a carer. 5.8.3
Getting it right - sometimes wrong
Whilst contributing to the nurse’s understanding of ‘truth’ (see later section: Residency) this passage from a nurse’s Personal Journal acknowledges the risk associated with care provider’s determinations about the shape of truth-telling: ELQ: DE: I don’t see truth in nursing as being any different than truth in any industry. You assess every situation as it arises. The truth to one is different to the truth to somebody else. Sometimes you get it right - sometimes wrong.
The carer understands the complexity and the vagaries of truth-telling in practice. Assessing the situation to determine ‘what they need to know’ and ‘what they don’t need to know’, when ‘the truth’ is variable, risks getting it ‘wrong’. Similarly, amongst nurses and their Manager, part of a group discussion passage exemplifies a conflict between nurse assessed need and resident determined want. The care providers operationalising truth-telling in practice risk making judgement errors and forfeit trust as a consequence: DJJ: …You want them to be able to trust us with the care of their family member and if we don’t tell something they need to know and they find out elsewhere…. (F)or example, Mum fell over and they will come in..everyone thinks Mum got bruises all over her and they will ask someone and they will say “Oh well she fell over a couple of nights ago” and it’s like “Hey I need to know as well”. (I)t comes back to that balance of what you say and what you don’t, you don’t want them to go away and sort of “Well they’ve been negligent and now I am going to..have their guts for garters”.
The nurse and his manager reflect on the possibility of the family accessing information from other sources under conditions in which the care provider has not disclosed ‘what they need to know’. In the context of truth-telling in practice the nurse manager and nurse colleague considered the potential ‘come back’ that emerges when what the family want to know fails to correspond with the care provider’s ‘gauging’ about ‘what they need to know’. There is a risk associated with judgements about what another ‘needs to know’. This question was put to DCI at interview: Is there a real risk that whilst protecting the family from what they don’t need to know the family at some stage will need to know and ask, ‘Why haven’t you been telling me these things I needed to know?”: DCI: (ii): Yes, I guess it is a risk….I can’t think of a situation..if they did come back and say ‘Why didn’t you tell me?’ I’d just (say) ‘It’s not something you could do anything about and it was only going to upset you. I’m sorry if you wanted to know all that stuff”…So all I could do is apologise..
The voices of the family were not captured in this study. However, a view by a family member that the personal carer, whilst ‘doing (for the resident) for the right reason’, does not necessarily do what is in the resident’s best interest adds to the cautionary views of the nurse and nurse manager above: ANL: (ii): I’ll use my mother for an example. If I wasn’t here, they (personal carers) feels as though they know all the right things to do and God forbid they are doing it for the right reason, we’d have her down there, we’d take her to the concert and all the rest of it. But it’s only because I’m here and I know it’s not what my Mother wants and never wanted it. (Y)ou must listen to the families…But to them (carers) they perceive that that’s what everyone should do and that’s why you’ve got to be very careful that we don’t box people.
5.8.4
Limits on knowing: Resident’s perceptions
A resident, bound to her wheelchair, narrated her experience of personal carers with limited insight into the resident’s care: AT: Why do you have that feeling, why do you have that feeling that … the nurses don’t get told everything. A2r: Oh,..I don’t know but I don’t think they do. I’ve got to tell them not to pull on my arms and hands every time..and I shouldn’t have to do that… For one thing they should read the form of all my troubles.. and the other nurse should make note of it too and say…. Look at my arms here from where they touch me. Can you see all those blue marks? And up high..and there is a big one further up..
Furthermore, this perception brings into question the information shared as adequate ‘to do (the) job’ as ‘hands on’ care(ful) provider, as A2r concluded: …some of them are so rough. And I know that’s forbidden…
The resident here recounts her experience in the context of the daily routine of care – the tasks of the hands-on carer. Elsewhere, a resident reflected on the care provider’s limited insight into and acknowledgment of the past-person: AT: (ii): Do you find that (care providers) are mindful of your (life history) – who you are and what you bring to this situation? B2r:…I don’t think all of the carers are aware of that... I think people here sometimes just take me as I am and they don’t look any further and I sometimes feel regretful of that because I feel I could contribute more …if they were aware of what I’d been like in other spheres in my life, at other times. .. B2r: I don’t know that they can know ... they’ve never ever asked me to talk about my disease. Nor the others.. that I know of have they ever asked them to talk about it …and they don’t show a lot of interest in the disease as itself only interested in you in your day to day activities now. That’s what I think.
Herein, the resident reflects that there is a limit to the carers knowing. Carers are perceived to focus on the ‘day to day’ activities – the care tasks. This view is consistent with the carers’ role perceptions and descriptions as is the resident’s experience that ‘talk’ is less about the resident’s experience and more about everyday care. This latter view is also consistent with the care providers’ understanding that the exchange of information is the nurses’ responsibility and personal carers are instructed to not to discuss ‘medical’ issues.
5.9
Discussion: Relationship
5.9.1
Family relationship
Both personal carers and nurses (team leaders) invoke a similar understanding about the care provider-resident and care provider-family relationship. Personal carers and nurses universally identify the relationship with the resident and family as fundamental to truth-telling. Personal carers in the C group spoke of a ‘good’ and ‘special’ relationship with relatives and residents. That is, some relationships are good but others are special. The ‘special relationship’ represents a ‘family like’ relationship. Within the relationship a ‘personal’ connectedness exists whereby family ask the personal carer’s opinion. Furthermore, the personal carers’ experience is that they are asked and respond when asked, when the relationship has been established with a family member who visits regularly and has become like a friend. The personal carers recognise that they give opinions when asked even though they know they are not supposed to – they breach a communicative role limit. Also with recognition of family bonding, the personal carer ‘gauges’ what to say and how to say it (feels that it is the time to say it). This amounts to a breach of the communicative role limit with an honest answer to the resident’s or family’s question. The personal carers perceive this breach as they understand that answering the question is outside their role and ought to be referred on to the nurse (team leader). Comparatively, the ‘gauging’ response represents the nurses’ behaviour free from the communicative role limit tension (see Chapter 6: Role). Similarly, a nurse (team leader) understood the relationship as a bonding with the relatives who in turn seek out and engage with the ‘personal’ nurse who is recognised by the family as a ‘special figure’ within the resident’s family. Likewise, this bonding results in family asking personal carers questions about the resident (relative). That is, the family seek out the ‘personal’ care providers who have become part of the family. The relationship so described is Family – either resident as family or care provider as family. A central feature of this relationship is that it facilitates the care provider knowing the resident and knowing the family. Care providers tailor truth-telling according to their judgements, what they know about and therefore what is in the best interests of the resident and resident’s family.
The care providers rely on their relationship with the resident or family members, and described ‘gauging’ the care circumstance as the foundation upon which their decision to omit details or disclose, in a particular way, rests. Understanding their view of this relationship provides an insight into their understanding of truth-telling in residential aged care. The relationship described metaphorically as familial – of or about family, offers a number of interpretations. A C personal carer has the view that the residential aged care facility is the resident’s ‘Home away from Home’. There also exists the philosophy of ‘family-centred nursing’ (BCT). Therefore, it is not surprising that this metaphor exists and supports the institutional ideal. Personal carers described the resident-personal carer relationship as family like, in which the resident is part of the personal carer’s extended family or the care provider is part of the resident’s family. Herein, a distinction emerges: care provider becoming the family/resident becoming the family. The care provider becoming the family describes the care provider being taken into the resident’s family. The nurses describe their relationship with the resident’s family as one that facilitates the nurse becoming part of the family. This portrays the familyresident as holding governance. Resident becoming the family, describes the resident being subsumed into the personal carer’s family. When the resident is perceived to be a part of the personal carer’s family – adopted other, the patterns of communication and therefore openness will be governed by the personal carer’s socialisation. This portrays the personal carer as holding governance and setting the resident’s family outside the personal carer-resident relationship. Additionally, this adoption personal carer family, establishes and maintains its know-ing of the resident whilst the biological family risks isolation. Equally, the relationship conceived of as parental, risks emphasising non-disclosure in terms of paternalism and interacting with the aged as infants. However, when the personal carer or nurse perceives him/herself to be a part of the resident’s family – adopted other, the patterns of communication and therefore openness will be governed by the resident’s or resident’s family socialisation and norms. In the case of open disclosure (truth-telling) by carer- nurse contingent upon resident’s family socialisation and norms, it isn’t clear that this will avoid adversarial advocacy between family and care provider nor eliminate benevolent protection. From the point of view of the personal carer and nurse, data suggest that these two
realities remain. What will be examined later is that the family makes the decisions about truth-telling and generally the decisions are considered unreasonable (see Chapter 6: Role). A nurse’s (team leader’s) insight to truth-telling as open disclosure, testifies to a dual role paradox. As a care provider, the team leader knows what is in the resident’s best interest, not the family. As a family member, the nurse insists that the family must be listened to. The team leader determines when ‘you go against the family (and when) you don’t’. This role tension experience by the nurse (ANL) – as care provider and/or family, underscores the sense of control. The nurse as professional controls the care circumstance and overrides the family’s request. In contrast, the nurse as relative rejects being controlled by this response and demands family are ‘listen(ed) to..’. Resident’s data also suggests that their understanding of and expectation for truthtelling and their perception of family (‘Don’t Tell Mum’) means that care providers adopted into the resident family will not necessarily become less prone to telling the truth with omissions. A critical observation can also be made on the use of ‘our’ (C3) and ‘their’ as it describes the resident and family, respectively. The use of the term ‘our’ in ‘our resident’ presents a different emphasis in the relationship when contrasted to the phrase ‘part of their family’. The language ‘our resident’ risks presenting the personal carer as matriarch who presides over the relationship in contrast to the language ‘their family’ which describes the care provider as becoming part of the already established membership with its defined leadership. Furthermore, personal carer use of language such as ‘the wife’ or ‘the husband’ in contrast to ‘his wife’ or ‘her husband’ when discussing a resident’s spouse, for example, adds to the ownership distinction. ‘The’-person objectifies the wife or husband as distant from the current circumstance and as belonging to the past. ‘Hisperson’ or ‘her-person’ retains an inclusiveness to the current care circumstance. Language that utilises both ‘our resident’ and ‘the-person’ risks conceptualising the resident in two parts – that which is known exclusively to the care provider, the nowperson resident (‘our resident) and that which is known to the resident’s family, the past-person resident (‘their, his wife’).
This ownership dichotomy has implications for care providers generally and personal carers specifically and resident’s family who believe that they represent the best interests of the resident. Unlike a biological adult child-older parent relationship, the institutional adult child (personal carer) and older parent (resident) do not share comparable life experiences. The presumption of the best interest of another, irrespective of the ethical appropriateness, based on a relationship duration of months or even a few years is less likely to be adequate compared to a similar assumption based on a relationship spanning many years. Knowing the resident or the family is dependent upon time (see Chapter 7: Residency). In the case of the resident this means length of time in residence whilst in the case of the resident’s family this means the frequency of visits and degree of interaction amongst the care providers. The factors that restrict time directly influence the care providers’ ‘knowing’ in the relationship, consequently limiting the care providers’ ‘gauging aspects’. Rather than editing the truth for benevolent reasons based on sound assessments of persons involved, the ‘easing and omitting’ of information risks becoming misjudged and a time saving strategy. Amidst the personal carers and the nurses, the familial relationship with the resident or the family is not universal. Whilst both understand that they ‘bond’ with the resident’s family and share ‘special’ significance with the resident or the family, the care providers understand that this high degree of relatedness is not established amongst all residents and all residents’ families. Within the descriptions of the family type relationship, the use of terminology such as ‘some’, ‘almost’ and ‘we are not blood’ indicates some exclusivity. The resident-as-stranger and the variability of the care provider relationship with family impacts on the care provider’s reliance on knowing the resident and family as well as making judgements about the resident’s and family’s capacity to cope with disclosure and, ultimately knowing what is in fact in the resident’s and family’s best interests. In the context of death discussion the friendship model, may or may not dominate. That is, a decision must be made - either the personal carer-as-friend discloses an honest opinion when asked by the family even though the personal carer perceives this is outside their role understanding or the personal carer adheres to the institutional policy and engages in an alternative strategy (eg mutual pretence) and refers the family member to the nurse. Care providers’ perceptions about death disclosure and truth-telling are examined in the discussion: Residency.
5.9.2
Knowing and truth-telling
Truth-telling in the relationship is premised on a degree of knowing the other. Determinations about what to say, what not to say and how to say it reside in the care provider’s views about their knowing-the-resident and/or their knowing-therelative. Knowing is temporal. Care providers understand that the getting to know the resident and in particular, the resident’s family (relatives) depends on the time dedicated to the relationship. In the case of the resident, this is the duration of the engagement (time in residency) in contrast to the family's frequency of visits and involvement during the residency. Role perceptions dictate that personal carers in this study generally know best the resident, followed by the family, and nurses know best the family followed by the resident. In the personal carers’ understanding of their work, if the family make many visits (high frequency) and the resident-personal carer time together is long (high duration) the relationship facilitates the personal carer’s decision to breach the communicative role limit or step over ‘the line’ (for further discussion about ‘the line’ see Chapter 6: Role). If the family make few visits (low frequency) and the resident-personal carer time together is low (low duration) the personal carer follows institutional policy, refers the matter on to the nurse and does not breach the communicative role limit. If the family make few visits (low frequency) and the resident-personal carer time is long (high duration) the personal carer will breach the communicative role limit, that is step over ‘the line’ for the resident. However, in the family’s case, the personal carer follows institutional policy, refers the matter on to the nurse and does not breach the communicative role limit. In sense, the researcher suggests that ‘If I know you well, I know what to say and what not to say that best serves both our interests…if you are an unknown (stranger), I’ll refer you to the RN!’ Consistent with the researcher’s argument against judgements about others premised on assumption, a nurse manager offers a caution about judging familyresident relationships based on frequency and duration of involvement in care. Whilst again evidencing authority, this same nurse questions if the personal carer can know the resident or resident’s family on the basis of (just) hands-on interaction.
Truthful disclosure is perceived to be less threatening to the nurse when it is assessed by the nurse to be less threatening to the resident’s family. Therefore, little is said when the family members are strangers. Additionally, the ‘trusted’ care provider tempers and edits the truth for mutual best interest over time since it is harder to know and be ‘trusted’ by a stranger. In the non-stranger/family relationship the nurse concedes the family’s capacity to cope with more open disclosure. Rather than holding to the ‘vision splendid’ of the past-person resident, the family who is clearly engaged in the clinical reality as it happens observes the now-person resident. What is disclosed is what is known to be known and therefore nonthreatening. Whilst this theory of management of truth-telling for mutual best interests may be contestable, what is not is the care provider’s view that knowing either the resident or the resident’s relative means gauging or judging who can and cannot cope with hurtful or harmful truth. Care providers understand truth-telling in the context of therapeutic privilege, meaning that they perceive a capacity to determine courses of action in the other’s best interests. This means that when, in their assessment, a person is deemed incapable of coping with certain information, this information is withheld. Knowing the resident and/or the resident’s family means knowing who needs protection from the ‘awful’ truth. Some type of truth tailoring will occur in the form of omission when the care provider perceives that a more complete truth would be otherwise detrimental to the ‘others’ health and well-being. It is this care ethic deemed in part a relational ethic to maximise benefit or minimise harm that presides over all truth-telling decisions. That is, either as a known other or as a stranger, determinations will be made about editing the truth. A more critical appraisal would conclude that care providers respond with information in a manner described by benevolent paternalism (or even parentalism). A personal carer (B1) in a journal entry, proposed that a role element is aiding the resident to have both a ‘fulfilling lifestyle and quality of life’ in residency (‘this stage of their life’). Whilst the way forward for the personal carer is harm avoidance and non-disclosure, residents in this study sought disclosure to reduce worry, get their affairs in order, be self-determining. In other words, they desired to get on with their life and accept their current and future circumstance. In the absence of the truth, the resident is unable to meet her/his desires and fulfil a complete life.
A fundamental part of the personal carer’s caring role is ‘above all, do no harm’ (Primum non nocere). Truth-telling is understood by the personal carers (and nurses) as potentially harmful and, by the virtue of non-malevolence, must be avoided. The proposition of ‘caring’ understood in this way rests on the perception that telling the truth is in fact harmful – that the truth hurts. This proposition of the ‘hurtful truth’ is, within the literature, recognised as an over generalisation and worthy of consideration in a few rare instances. Research data reveal that residents themselves do not hold to the view that telling the truth is hurtful (and therefore they ought to be protected from it) but rather they seek openness. The question that emerges is: How well does the care provider know the resident? Does the care provider know the resident to a degree sufficient to know that the truth will harm the resident? Do care providers seek the residents’ understanding? The residents’ understanding of truth-telling in practice suggests that the care providers neither sufficiently know nor ask the residents’ preferences. Furthermore, as truth-telling in practice (see Chapter 7: Residency) finds meaning in the care providers’ knowing, in the context of the resident’s family, duration and frequency are also essential. Truth-telling in practice with a reliance on knowing over time is further understood - as duration becomes greater and frequency increases, the care provider assesses what to disclose and what to omit with perceived greater certainty. Therefore, for example, the nurse knows what the family ‘need to know’ and what they ‘don’t need to know’ in an expanding temporality. (See Chapter 7: Residency for the expansion of these concepts). Therefore, truth-telling in practice is understood to be truth disclosure and truth omission in the best interests of the resident (or family) as ‘gauged’ or ‘judged’ by the care provider. The decision to disclose or withhold information is grounded on knowing-the-resident intuitively and based on experience. Intuitively or based on experience, this decision, irrespective of the noble intention, is retained by the care provider rather than the ‘care priority’ – the resident. Knowing is conceived of as a knowing-about the resident who is in long term care in contrast to the person who was or is known-prior to admission into care. The care providers know the now-person as the resident in their care whose condition changes over time. They perceive that the resident’s family fail to come to know this
now-person, preferring to hold on to a past person as the relative they knew prior to admission into care. Personal carers contend that this is as a consequence of the family’s denial-guilt-hope trilogy (a complete discussion about Hope and Guilt-denial is forthcoming). Paradoxically, care providers editing the truth for benevolent reasons for the resident’s family means that the family have their (past) ‘vision splendid’ reinforced. That is, the family can never come to know the now-person relative as it is protected from the care circumstance of senility through the omitting of care details. In these data the personal carers’ sense of knowing from which evolves an intention to protect the family creates its own paradox, threatens trust and fosters ward orderliness ahead of information sharing. Whilst the personal carers aim to serve the best interests of the family, by their own reflection, they recognise this confounds the family’s ability to face reality in a critical moment. Trust is threatened when, upon being confronted with the care circumstance reality – seeing beyond the illusion of the ‘vision splendid’, the family comes to question under what other circumstances truth disclosure has not occurred. The causality of the paradox and the threat is the family’s improbability of believing what is true since confronted by the care circumstance reality, they become aware that a more truthful disclosure has been denied. The care providers have knowledge of the care circumstance and the now-person resident whereas the family will not. Therefore, the care providers have control of the inclusion and exclusion of the resident’s family in the care situation. However, in the context of truth-telling, the knowing that these care providers describe is not universal. That is, it is unachievable in all care circumstances. It is restricted by time and the personal carer’s capacity for establishing an affinity or rapport with the resident or family, so truth-telling may never be fully realised and only sometimes partly realised. A view held by a member of the E group and confirmed in the literature is that the residents are admitted in a more frail, terminal and dependent state and invariably for a ‘shorter stay’ than in the past. Additionally, research literature suggests that the resident-care provider encounter is infrequent and brief. These two considerations tarnish the gloss of the care provider’s knowing with its reliance on temporality. The implication for the care provider’s decision making about truth-telling and what family
(or resident) needs to know, don’t need to know, how much is needed and what is wanted, is that the care providers risk getting it completely wrong or only sometimes right. Personal carers claim to have a ‘good relationship’ and ‘know the resident well’ - like ‘family’ or their own ‘children’ or their own ‘parents’, to include the residents’ ‘likes, dislikes, moods’. These perceptions need to be balanced by residents’ views that ‘(personal carers) get in (talk about) with their own things that they do and their family themselves outside…’ (E1r) that ‘the majority of doctors when they come to see a patient or that, they don’t (talk) to a patient, they get the family outside and tell them’ (C4r). As representing the social dynamic amongst care providers and the resident, this means that what the care provider’s perceive to be a relationship in which they come to know the resident is not necessarily a perception shared by the residents. A D nurse manager recognises that residents are labelled from the moment they enter the residential aged care facility. The resident risks the stigmatisation of a diagnosis but also the perceived stigma of old age itself. In this stigmatised world, the disclosure of information amongst staff must be managed carefully. Residents are labelled as deniers of truth (liars) and as children. This labelling brings actions and consequences to the care context. Infantalising the resident is manifested in a number of actions that bring a number of consequences to the understanding of the workings of truth-telling. Nurses and personal carers alike infantalise the resident. The child-like resident brings about a tension among staff and between staff and the resident’s family. Children tell lies and so do residents. Recognising the resident as a child means that they are cared for as a child. The care role in residential aged care is understood as ‘baby sitting’ or child care that, as a consequence, means that the care provider buffers the truth to keep the resident’s family happy. The child-resident is emotionally incapable of coping with the truth. Sometimes, children need to be protected from the truth with ‘white lies’ for their well being but also for happiness sake. So too the child-resident. What is revealed to the resident is an edited or stratified and simplified truth. However, a critical interpretation of the ‘baby sitting’ metaphor would have to ask: Is the nurse afraid to acknowledge the depth of her own frustration? Is the nurse afraid of being judged a hopeless care
provider? Is the nurse afraid of the reaction of the family if she reveals her concerns and her ability to deal with this reaction? The metaphor and this critique of the edited truth as a response to these critical questions is analysed in the data and discussion: Relationship and see Chapter 7: Residency. The view, held by the personal carer, that ‘basically they are like children ‘demanding and quite happy to get you in the shit if it suits them’ (B4) rests on the contention that when the resident is conceived of as a ‘child’ and parented by personal carers and nurses, the resident in essence responds according to the dictum: ‘Treat me like a child and I’ll behave like one!’ Interacting with the resident symbolised as child in turn invokes the resident’s response as a child. Therefore, the resident who lies and creates tension among the staff and between the staff and family is merely adopting the role the labelling brings. When the resident is perceived as a liar, the consequence for the personal carer is that the role perception as a good and happy helper entails accepting the resident’s interpretation of events. Role self conquers true self. This researcher argues that lying by residents is, in fact, an expression of identity and power in a context that defines the resident as a child under the control and protection of a parent-personal carer provider. The resident’s intent, rather than to cause harm per se is to express control or power in an otherwise powerless, isolating and silenced environment. When the resident is labelled as a child, the care provider alone can best serve the interests of that child, and is thus best suited to control or contain the disclosure of information. As a result, the care providers share information with the resident or family ‘in stages’, ‘in layers’ or ‘ease and omit’ of their own will. What they do is reasonable. In the care providers’ view, what the family does or demands that the nurse or personal carer to do in the context of controlling disclosure to the residents is not reasonable. (The role of the family as controlling information sharing is discussed in section: Role).
5.9.3
Care in their best interests
Care providers collectively understand their core business to be the welfare and best interests of the aged care resident. The best interest of the individual resident, who is the focus of their care, is perceived to be above any other’s interests. However, data suggest that the claim that the resident is ‘first and foremost’ is at best idealistic and probably mere rhetoric. The prioritization of the resident as the only object of their care can be critically questioned. For example, when information is sought for determination about truth-telling and knowing the residents, a nurse (ANL) questioned if such knowing is really possible and also nurses find themselves pandering to the family’s best interests rather than the resident’s (C nurses group). Furthermore, in practice, situations do arise where the best interests of the resident are forfeited for the sake of the family’s requirements. Personal carers realise that they respond to the care demands placed upon them by the resident’s family even in circumstances where, in the personal carer’s judgement, the family is uninformed and the resident may suffer. Whilst care providers claim to know the resident’s needs and wants, the resident’s presence (the resident’s voice) in the care providers’ narratives fails to suggest an opportunity or place for the resident as a self determining other. That is, care providers’ advocacy role with its oversight for protection, overrides autonomy. The care
providers’
role
as
the
resident’s
advocate
emerges
more
as
paternalism/parentalism – sometimes benevolent and sometimes not. It is argued here that personal carers’ meet the demands of the resident’s family to avoid disruptions by maintaining a relationship with the more influential ‘others’. Immersed in their role which defines their work and their position within the institution’s hierarchy, the personal carer is partly damned if they do and damned if they don’t. Whilst the voice of inexperience (B2) is uncertain about the priority of care, the voice of the experienced (B5) counsels her by saying: ‘..stay sane is the first thing’. Those with experience have come to understand that self preservation competes with the ideological notions of the best interests of the resident. In practice, nurses in this study must contend with what they perceive are the competing interests of the resident’s family and the care provider’s judgements of
what is in the resident’s best interest. Like their personal carer colleagues, the nurses understand that their ‘duty of care lies firstly with the resident’. Again, however, care circumstances reveal the nurses’ do forfeit the best interests of the resident to avoid confrontation with the resident’s family. A nurse and nurse manager in this study perceive the family as a potential threat and accept the risk that ‘gauging’ a relationship and the resultant truth omission brings. The nurse and nurse manager reveal themselves concerned with the family’s welfare (and their own) and less concerned with the welfare of the resident. Ideals and the clinical reality emerge as incompatible. Ideally, the best interests of the resident would always be upheld. Who best can determine these?– the apparently silenced but competent resident. In practice, the resident does not emerge in the care provider’s discussion as a pro-active participant in their own care whose opinions are sought. 5.9.4
Trusting relationship
Both nurses and personal carers aim and presume to be in a trusting relationship with the resident and resident’s family. The notion of a trusted care provider occurs as a function of time spent in the relationship with residents and residents’ family. The temporality of the relationship means that care providers’ knowing the resident and resident’s family establishes the presumed trust. The personal carer’s ‘knowing’ of the resident is perceived to be reciprocal. The personal carer knows the resident and ipso facto the resident knows the personal carer. The resident comes to have a firm trust with the personal carer. The personal carer knows the resident’s limitations and capability for coping with the truth and the resident has confidence in the personal carer’s judgement of this limitation based on personal carer judgements of the resident’s best interest. When the type of resident is changing such that they enter the residency in a terminal phase of ill-health and therefore for shorter duration (EPO) and literature supports the reality that the care encounter (nurse-patient interaction) is brief, then the denseness of this knowing, so heavily temporal in character, risks impoverishment. The implication for reasonable decision making (‘gauging’, ‘judging’) about truth-telling is that the assessment becomes founded on assumption.
The trust of the resident’s family holds greater significance for the nurse and nurse manager whilst the trust of the resident is seen as the domain of the personal carer. This emphasis is consistent with the perceived roles and consequent division of labour (see Chapter 6: Role). A view exists that the resident’s (presumed) trust set in the temporal care context is contingent upon the resident’s dependency upon the care provider (carer). The presumption of the resident’s trust resides in the perception of an ever increasing dependence by the resident (and, speculatively the family) on the care provider. In aged care, by virtue of roles, the personal carer becomes for the resident very much the trusted other. The personal carer as the task (care) master becomes increasingly trusted by the increasingly dependent resident and by association the personal carer becomes increasingly possessive and persuasive. With a strong protective work emphasis, the personal carer’s trust perception manifests as ‘Believe me, it’s true’. That is, the personal carer alone knows what is in the resident’s best interests and the dependent resident has little other option but to trust those in control of their care. Whilst personal carers have control over the performance of the resident’s tasks, overall the nurse is in control of the personal carer and residency. The resident perceived as dependent and the promotion of dependency occurs in a work environment that emphasises doing care that in turn establishes, maintains and accounts for the care providers’ perception of trust in them by another (resident or family). Some personal carers recognise that a resident’s care circumstance means that the resident must and is capable of determining amongst the care providers who ‘bullshits’ and who does not. This perception means residents have an awareness of who is a liar and who is not. Therefore, trust manifests itself as defining a care provider who is believable – in word, about what they say, and reliable – in deed, doing what they say. The argument proposed here by the researcher is that residency as a place of doing care establishes, promotes and maintains care provider perceptions that residents (and relatives) trust the care providers. In contrast, residents’ awareness (as established in the data) allows them to see beyond and question this presumed trust that would otherwise have them uncritically accept that ‘Believe me (the care
provider) it’s true’. The existence of suspicious awareness and mutual pretence as established in this study undermines any assumptions of trust in the context of openly sharing information. The nurse’s action, in sharing relevant or certain information that tells ‘the story’, aims to keep the family as a friend so as to avoid the possibility of litigation and/or criticism of nurse’s professional behaviour. The telling of ‘the story’ remains the domain of the nurse who is motivated to avoid disruptions to the social order and acquire the trust of the powerful - the resident’s family. A D group of nurses describe truth-telling as ‘easing and omitting’ as truth disclosed and truth omitted (where that which is omitted is harmful, damaging or upsetting). That is, ‘not telling them all the pieces, all of the truths, not giving a whole story’. Here in the data, ‘curbing’ is akin to the process of truth-telling in practice both of which risk diminishing trust and accusations of negligence. Trust is essential from the resident (and resident family) for the care provider – ‘to build up trust and confidence’ in the care provider if truth-telling in practice is to operate successfully, free from reprisal. Overall, the core business of care may be the welfare of the resident. Related to this, the personal carer aims to ensure that the resident trusts the personal carer to act in the resident’s best interests. Trust, in this sense, is related to an action expectation. However, this trust means that the resident needs to be aware that it is also the personal carer’s business to avoid disruption, avoid problems with family and stay out of trouble. Residents reject telling the truth about their care circumstance as hurtful. For them, hurtfulness comes from the unplanned and accidental awareness of a previously undisclosed truth. An element of the hurt associated with this awareness of a previously undisclosed truth is the realisation that trust has been betrayed. If trust is to exist in a relationship, open communication is essential. For an A resident, honest communication is essential for confidence in, and to be trusting of, the care providers.
5.9.5
Hope
Both the personal carers and the nurses describe hope as being necessarily realistic. Realistic hope resides alongside clinical or diagnostic knowledge upon which achievable outcomes can be determined. Hope in this sense is goal orientated, measurable and care provider determined. Resident hope (and the hope of the relative) is understood to be hope for a cure. That is, hope that treatments will return the resident to at least a past, satisfactory level of functioning. Care providers clinical hope is partial, realistic and positive whilst resident hope is ‘total’ (that is, a return to a previous ‘totality’) - unachievable and negative. Therefore, there exists a perceived hope-gap. Generally, truth-telling in practice aims to deliver to the resident and family clinical hope and must, therefore, in practice deliver a reduced hope (it delivers hope that is less than the resident hope). However, data reveal the care providers utilise a variety of hope communication practices that suggest what is told is determined by the care provider. What is expressed conveys hope in context at the discretion of the care provider. The care providers describe the resident’s family’s hope as a possibility, resident’s hope as an expectation. For nurses, the family’s hope maintenance is contingent upon the nurses’ knowledge of the family. Nurses determine what to say (what to disclose) based on an assessment of the resident’s family. When the family is perceived to be open to the truth and sharing the nurse’s realistic hope, what the nurse knows about the care circumstance is more fully disclosed. With a family perceived to be burdened by residency or less open to the truth and holding to their hope – a hope that is futile, unrealistic, false and grounded on impossible and unachievable goals, the nurse engages in a linguistic strategy. A nurse or physiotherapist engages in a communicative ‘soft shoe shuffle’ when hope is to be maintained but re-aligned toward a care provider realistic hope. That is, they ‘skip’ or ‘tippy-toe’ around the response they perceive as factual. They aim to avoid death disclosure and facts or language that are considered harmful. This they achieve through responses that are not untruthful in themselves, but re-direct the conversation away from responding to the question that is asked of them. Clinical hope dwells on the elements that are good and dwells on comfort care.
Equally, euphemisms are utilised alongside diversion. The aim in utilising these linguistic practices – euphemisms described as ‘different terminology’, is to emphasise what is in the care provider’s judgement the doable and therefore the achievable. Additionally, the emphasis is to protect the other from the burden of what the care provider knows is a bleak (negative) prognosis. Euphemisms, as with diversion or truth-telling in practice are usually employed for care provider determined benevolent reasons. However, a proposition is that the very nature of euphemisms, in their attempt to balance hope against hopelessness risk misunderstanding and mutual pretence. The relationship between hope and life time understood by B2 means that when residency is perceived by care providers as a dormitory for dying there is potential for hope to become the elixir for all ailments and a communication practice that results in mutual pretence. (For further analysis of this residency as a dormitory for dying see Chapter 7: Residency). When care providers engage in hope maintenance with the resident-relative premised on mutual pretence for benevolent reasons, hope may also easily be used for the control of ward order. A personal carer knows what a resident-father wants to hear (B2). Understanding hope with a goal orientation, the personal carer determines what goals are in the resident’s-father’s best interest. Therefore, hope maintenance can be achieved by not telling the truth, being dishonest (denial and lying) since the personal carer knows what goals are best for the resident-father. The personal carer’s understanding of hope, in the context of her dying father, manifests as a false hope that wards off harm but is meaningful as a mutual pretence. The personal carer considers herself justified in determining this approach but personal carers are critical of the resident’s family holding to an unrealistic hope premised on denial. Residents may understand hope as the possibility of a cure but they appreciate their own reality. Hope can be maintained in terms of what can be done and residents in this study want openness about their prognosis. In the context of hope, the resident group remains consistent with their view that truthfulness outweighs any claims for protecting them from any perceived harm an incurable or ‘hopeless’ prognosis may bring.
5.9.6
Guilt-denial
Guilt, denial, hope and grief describe the family member’s state when placing a member of a family into residential aged care facility. A personal carer’s experience (C1) as a next-of-kin, who decides to admit her mother into care, accords with the nurse managers’ view about how a resident’s family generally feel (CPJ, DJJ). A personal carer (C1, as family) experienced over time the burden of the care responsibility that eventually resulted in an inability to cope. That is, the family decides to admit their relative (resident) when the family personal carer can no longer sustain the care responsibility alongside other role responsibilities. The family member attempts to justify with the ‘self’ this decision that, on the one hand may serve the best interests of the resident (relative), but will also serve the best interests of the family. The personal carer as family, describes a sense of entrapment in which the family member is challenged by obligations to the resident (relative) and an obligation to herself and others. Consequently, the decision to place a relative into care causes guilt. In this guilt phase, a phase that may be transitional or terminal, the care providers describe the resident’s family as deceiving itself. The personal carer’s view is that such families ‘lie to themselves’. This ‘lie’ is the pretence that the resident (relative) ‘is good’ (that is, positive prognosis) when the reality of the care circumstance suggests otherwise. The pretence occurs as the resident’s family attempt to deal with their internal narrative: ‘I should have been able to look after Mum. Mum looked after me, Mum did this for me…Now I have to put Mum into a nursing home…’ and ‘(Have) I done the right thing by her?’ and ‘(E)verything (has finally) lifted off my shoulders’ and ‘I feel bad’. Hence, the ‘lie’ is born out of guilt and self doubt. In the case where the family is the personal carer who decides to place a relative or spouse into residential aged care, the pretence of recovery underpinned by family’s hope exists because denial suppresses feelings of guilt. The pretence of recovery absorbs the family’s questioning “Is this best?” and feelings of “God! What relief”. What emerges in this understanding is that the family’s guilt is eased through denial and hope. In a personal carer’s view, when the family asks ‘Isn’t Mum looking well today?’, the family members are deceiving themselves for the purpose of easing their guilt. Rather than acknowledging the now-person resident whose prognosis is poor, the family holds to a past-person resident (relative) through their denial and attach to
the past-person resident (relative) an unrealistic therefore unachievable hope expectation. An added manifestation of this denial-hope coupling is that some resident relatives are perceived to mistrust any shared information and engage in truth validating behaviour by checking what they have been told amongst care providers. Significantly, the care provider’s practice of omitting details about a resident’s behaviours for benevolent reasons, fails to allow the family to fully appreciate the now-person resident and holds the family to a ‘vision splendid’ or an other wise pastperson relative. That is, when truth-telling in practice is a managed disclosure achieved by editing the whole story for the purpose of protection, the family’s denial and self-deception is maintained by the care providers’ very practice. In the data, the relationship between the resident’s, but mostly family’s guilt, and truth-telling resides within the understanding of truth-telling in practice as ‘ease and omit’. Guilt is a ‘bad’ feeling (not an instrumental ‘good’) about putting a relative (resident) into care. Therefore, disclosure of information by, for example, the nurse (manager), described as a ‘delicate’ process, is one whereby information is withheld with the intention to avoid adding to the already prevailing burden of admission. Rather than ‘whole truth’, what is disclosed are truth bites as benevolent vagueness that placate (eases) the non-coping family member. Over time and within the guiltdenial phase, there remains a care provider intention to reveal ‘whole truth’. Guilt is temporal. During guilt time ‘what they (family) need to know’ is the truth disclosed and ‘what they don’t need to know’ is the truth omitted and withheld. The truth omitted is conceived as the ‘nitty gritty’ or the ‘graphic’ of the resident’s behaviour. This suggests that families (and residents) who are assessed to have a ‘grieving and guilt (that) never stop’ similarly never experience the ‘whole truth’ but rather have information constantly withheld, or omitted. The information shared and the information omitted both favour the ‘vision splendid’ and in so doing aim to lighten the guilt load and diminish the harm of denial. Disclosure about an event or behaviour of the resident will not emerge when, in the nurses’ view, the family cannot do anything to ‘fix’ or ‘change’ the behaviour or event or the event or behaviour does not impact on the overall care provided to the resident (see Chapter 7: Residency). A comment is required. A resident’s behaviour, such as smearing the walls with his/her own faeces, may not be able to be ‘fixed’ by a family member. This view was
exemplified by a nurse (DGS) who understood he should not ‘bother’ or ‘worry’ (inform) the resident’s family about their relative who persistently ‘falls’ ‘unless there was something specific..they (resident) went to hospital or..there might be a fracture’. A family may well contribute to ‘fixing’ or ‘controlling’ the falling behaviour of their relative in care, though the likelihood of this is significantly reduced when the behaviour is not disclosed. Truth-telling in practice understood as informing about some events and not about others risks being understood by family as perverted protection. The possibility of this risk was stated by the nurse (DCI) who said, ‘but I personally don’t see that as protecting us, but by the same token the family may see it that way…’. Additionally, the possibility of perverted protection is highlighted by a nurse who commented ‘…you don’t want litigation and you don’t want them to come back and attack you, because you didn’t give them the information’ (DGS). A nurse manager concurred and foresaw the perilous nature of truth-telling in practice. The nurse manager (DJJ) realised that relatives become aware of ‘bruises’ and declare ‘I need(ed) to know…’. The nurse manager concluded that balancing ‘what you say and what you don’t’ is aimed at preventing the resident’s relative wondering ‘Well they’ve been negligent and now I am going to…have their guts for garters’ (the author proposed this perverted protection in an earlier discussion). However, guilt-denial as an impediment to openness is challenged by a nurse (team leader). Her seemingly critical response amongst a group of personal carers proposes that the presence of guilt ought to be managed therapeutically. Openness that brings an awareness of the now-person resident is possible through carefully managing the family’s denial. This criticism is spoken by the nurse who is also family. In contrast, this same nurse in her role as a team leader, understands that other situations with family and residents do arise when the care circumstance dictates tailoring the truth through omission.
5.9.7
Limited knowing
How the care providers operationalise truth-telling in practice is determined by the way they describe the relationship as a site for knowing the other (resident or family). Through knowing, the care providers make determinations about the what and the how and the why of telling the truth. As this is the case, data describing this knowing and limits to this knowing, add to the overall comprehension of truth-telling in residential aged care. The care provider’s insights that suggest ‘knowing’ is in any way compromised, risks judgements about truth-telling and what family (or resident) need to know, don’t need to know, so how much they need and what they want will be erroneous. Care providers understand that in practice, assessments about telling the truth are not always correct. Sometimes they get it right, in other care circumstances they get it wrong. The perception that the care provider knows a resident or family history is overtaken by perceptions that the resident is a stranger or that care providers just do not know a resident-family history. Therefore, the residential aged care facility conceived of as a ‘Home away from Home’ in which the care relationship is ‘family like’, must exhibit openness rather than silence if it is to be something other than ‘problematic’. Additionally, the personal carer believes the work of nursing and the experience of nursing as unknown to the residents’ family. Knowing about residency and the resident comes from experience. A family does not know. If family are to know, they need to be told, information needs to be shared, behaviours described rather than withheld under the guise of protection. A family can never know about the resident or residency when personal carers and nurses maintain the ‘vision splendid’ by concealment even when this is underpinned by benevolent parentalism/paternalism. The relationship upon which the workings of truth-telling resides is described on a continuum – ranging, as care providers describe through ‘family’, ‘friend’ to ‘stranger’. Furthermore, the care relationship is ‘not with everyone’, is sometimes described as ‘good’ and even sometimes ‘special’. Consequently, just as the care provider- ‘other’ relationship varies, so too knowing and the influence this knowing has on telling the truth.
As a stranger, whether the resident is the stranger or the resident’s family, the judging or gauging about what to tell or not to tell is more difficult as the care providers’ are uncertain about their assessments of the other’s coping capabilities. Knowledge about the resident-spouse relationship can be unknown. Nurses acknowledge, be it at the admission stage of entering a residential care facility or in death, they do not always have an understanding about the family history and/or the resident. As a nurse (team leader) reminded her colleagues (personal carers): ‘(You) think (you know)…How do you know?’- cautioning them not to make judgements. Other data in an interview (ANL), however, contradict this (‘judgemental’) understanding. The nurse reveals that when asked by a family member to ‘not tell Mum (resident)’ about ‘taking her for an examination’ she, the nurse, ‘know(s) how she’ll (resident) react’ and does not put the family’s request ‘before’ her own judgement. This shifting of perception emphasises her control as a nurse (team leader), in contrast to her understanding of the family’s position being ahead of the personal carer. The family is perceived in some situations to not want to know the now-person resident, holding to the memory of a past person, the more splendid vision of their relative (resident). This is an additional vagary of truth-telling since care providers potentially will have an insight into the care circumstance of the now person resident but with a diminished insight into the past person resident because of the absence of ongoing family input. In turn, the foundation of truth-telling, the knowing about the resident, is weakened for care providers whose role it is to act in the resident’s best interests. Where insight into the resident’s life is diminished so, too, a more complete knowing and potential for assessments about what to tell or not to tell based on judgements about need to know, is lessened. Further compounding the position argued here – that knowing the other is limited, is the role division of labour and disclosure that divides the care tasks and information management between personal carer, nurse, resident and resident’s family (see forthcoming Chapter 6: Role). This strengthens the view that making decisions about what information is disclosed and what information is not disclosed, in the resident’s best interests, must be made on asking the resident and for that matter, the resident’s family about his or her own wishes over time.
A resident’s perception in this study is that the care providers are focused on care as a task rather than engagement that would establish a relationship described by a friendship model. The care provider’s role emerges as the good comforter who actively attempts to get to know the resident’s family though the view here is that this engagement is brief. In the context of truth-telling, these views indicate that care providers would have a limited claim for knowing the resident and/or knowing the resident’s family adequately for the purpose of judging (‘gauging’) the limits and extent of open disclosure. Additionally, the personal carer in this study is perceived by the resident to be uninformed about the resident’s care circumstance – particularly prognostic outcomes. Information of this kind is sought from the doctor or the registered nurse. The consequence of this is that the least informed care provider is the primary care giver – the ‘hands-on’ carer. The personal carer is not only perceived by the resident to be restricted in what they know, but also limited by their role and relationship with the resident-family-institution about what they can and cannot disclose. A resident in this study acknowledges that in order for a care provider-resident relationship to be underpinned by confidere, the personal carer should be sufficiently informed to (take) care. Knowing the resident extends to being familiar with the resident’s care needs. Familiarity of this type comes from care provider to care provider communication and through spending time with the resident (duration). Confidence in the care(r) is diminished in the absence of familiarity. A resident-care provider relationship underpinned by trust emerges as one that is caring whilst careful, and also honest enough to acknowledge carelessness.
CHAPTER 6 FINDINGS: ROLE
Figure 6.1: Role
CHAPTER 6 FINDINGS: ROLE
6.1
Introduction
This chapter is the second of the three (3) findings and associated discussion chapters. Figure 6.1 displays the core themes and the following Table 6.0 the corresponding sub-themes for this Chapter, 6: Role: Table 6.1: Role and sub-themes Chapter 6
Core Theme Sub-theme Role of the personal carer
Role of the nurse(a) Role of the resident’s family(a) (a)
Role Happy comfort carer Division of labour Division of disclosure Role tension and disclosure Managing the division of disclosure Happy good nurse Domain of disclosure Managing the domain of disclosure Disclosure controller Don’t Tell Mum
Theme with accompanying residents’ data
What the care provider does (role) for or with the resident or resident’s family cannot be clearly separated from the nature of the relationship that emerges within the care context (residency). This is evidenced by the data and is articulated succinctly by C1: C1: (ii): …I guess depending on what you’re doing for the resident I guess determines the closeness you have with them…coming from the top, (Karen, facility’s Administrator) will admit herself that she’s had nothing to do with what type of work we (personal carer) actually do.
Nor can the role the care provider occupies be isolated from the relationship that is established amongst other colleagues. This is evidenced within the data and is articulated succinctly by D JJ: DPJ: (ii): I always have my door open but I find that the barriers go up are from the floor, not from me. I find it’s ..almost like if they trust us, it’s like betraying ..their own kind sort of thing… And yet I’ve been out there as a registered nurse and I’ve worked alongside them….(B)ut there are certain staff who see you, after you’ve crossed over the line that you’re now the enemy. (I)n management you’ve got to learn that that’s the way it’s always going to be.
How care providers perceive and understand their role determines what care providers will or will not tell. That is, the perceptions both carers and nurses have
about their own and each other’s role – how they describe themselves for example, as ‘hands-on’ carer and ‘happy good nurse’ has implications for the way disclosure operates and is described. 6.2
Role of the Personal Carer: Happy Comfort Carer
The personal carer emerges in the data as the happy worker who aims to comfort and to make residents’ lives comfortable: D1: … I think our position is to make these people’s last days as pleasant and… D3: …comfortable D1: …and happy as possible without dragging up grief or making them feeling uncomfortable..
A personal carer role responsibility in the sustaining of a ‘quality of life’ (D1, B2) is one that promotes this life in residency as pleasant and comfortable. Carer (D1) confirmed this view writing in her journal: D1: DE:I think, as a nurse in a Nursing Home…That it is our job to make their last days as happy, comfortable, and love-filled as possible. If that means we have to ‘stretch the truth’ occasionally, so be it.
Later, she went on to say: D1: We're very up people…very happy, cheerful people .
Personal carers require an optimistic, positive disposition. Furthermore, the personal carer revealed: D2: Also when they’re upset.. it’s just nice to stay just a bit longer and give them a cuddle… D1:.. It takes a certain type of person I think to work in this sort of (area)…It’s lousy pay and it’s always giving - you’re constantly giving, giving, giving.
The personal carers here consider themselves as self-sacrificing, giving over and above of their time for poor remuneration. Regarding this theme of ‘giving’, a colleague elsewhere understands: B4: ..I have been doing this for a long time and I have cried for years and years whenever my resident died on me… But I don’t any more …just what have we got to give to them.. as far as I am concerned we are here to make them comfortable to make them happy and sometimes love if we keep them alive like we do.
The personal carer is by her own understanding a happy comforter. Telling the truth, perceived as hurtful, inducing anxiety, pain or stress is avoided or tempered by the carer committed to the resident’s ‘happiness’ and ‘comfort’. This personal carer (B4) reiterated her view premised on her own personal experience within the care circumstance of her own family:
B4: Did you know the biggest lie I ever told? My sister, this is when I was living in -----ville she come from the station - they opened her up and shut her up, said she had a couple of weeks to live.. I brought her out of hospital and put her down this end of the house. My Dad had just had a heart attack and was in hospital..and I had him in this end of the house… And the biggest lie of my life was having to lie to her husband and lie to my Father and lie to my Mother and saying (Margaret) is fine she will be fine... But they are the lies, they're the lies I have had to tell. And there's that word again - to keep people happy and to me that’s what we do.
The lie is considered an essential response since truth-telling can invoke harm – in this case a response likely to cause death. Additionally, because the personal carer’s role understanding is as a happy helper, as a happy comforter, truth-telling can only be a vehicle for happiness. Another group that included a nurse (team leader) and personal carers discussed a response to a family’s request to ‘Don’t Tell Mum’. Both the nurse’s and a carers’ role perception emerged through their analysis of how they would manage this situation. The care providers said: A6: We’re like big cushions, that’s what we are. AT: What does that mean? What’s it like to be a big cushion? A6: You’re just, you’re there to ease all the… from everything for them..
The carers described their role as ‘big cushions’ as frustrating but A6:… at the end of the day we’re here to look after them. You look after them like you look after your own parents. What hurts them hurts you so if you don’t think they could stand that kind of blow you cushion it..
Thus, truth-telling can come as a hurtful blow. The carer’s role is to ‘soften it along’. B2:…I mean some lies you tell because there really is just no benefit in telling the truth, but I would probably (also) look at well maybe there is a benefit in telling the truth.
Truth-telling is understood as an instrumental good. Unless a good (a benefit) outcome results, neither a lie nor truthful disclosure are options. This conferring of a good is intrinsic to how the carers perceive and describe themselves as good and happy helpers who protect residents from harm.
6.2.1
Division of labour
In addition to how the personal carer perceives herself in terms of character traits, the personal carers articulate an insight into their role in terms of what they can and cannot do: C2: ..(E)ven someone came up and asked us “What’s mum’s results?” or “Do you think this and that”. We can’t really say anything. We just say you go up and ask an RN, so we get asked a lot C3: We can’t really go about saying… C2: …but its part and parcel to the RN.
From the personal carers’ perspective in this group, the registered nurse (team leaders) are the information managers. The personal carer sees this as the nurse’s role, have been instructed as such and generally follow this instruction. The conversation continued, highlighting the division of labour and the consequent handling of information: AT: Are you informed? That is, do you have that type of information? C1: A lot of it no, not when it comes down… C2: Not medical, but… C3: (T)hey tell us what we need to know to do our job. I mean we ask question and they tell us… C1:..We have a lady now who has a constant rash.. so her family speaks to the team leader. The team leader tells them one thing. They believe it’s another. They come and actually ask you if you know. We have to send them back to the team leader because we are not qualified to tell them what it is, even if we think we know, so…
Additional insight emerged about this information seeking behaviour, when asked at interview: C3: (ii): Yeah, that happens, not all the time though. They need reassurance I suppose.
Furthermore, contrary to the information seeking and informed position from which the personal carers (C1, above) perceive that they operate, at interview a nurse suggested when discussing roles and information management: DCI: (ii): (W)e have ..had experiences where people really get distressed by what carers have said…because carers don’t have the full knowledge, they’re not talking to doctors. They’re not reading the charts. They’re not au-fait with what’s really happening with the resident…
What emerges is that in the domain of practice, the division of labour is thus: nurses are information gate-keepers, carers are doers. This palpable distinction between doing and disclosure was emphasised in an interview in which a personal carer was asked to clarify her role in the care of a resident who had a persistent rash. Elsewhere, a colleague concurred:
D2: There is one instance where I gave my opinion…to a resident.. she was complaining of diarrhoea..and I said "Try charcoal tablets". ..So she went to the RN and said, "I want some charcoal tablets", and the RN said, "Who told you about charcoal tablets?" “That girl that comes to see me”. .. D2: …So RN heard about it, “(D2)…can you please keep your ideas to yourself. No diagnosis please”. D1: You stepped over that line.
This ‘line’, the division between doing and discussing was reinforced by a nurse (team leader) at D: DCI: (ii): (T)hey (personal carer) shouldn’t be assessing things, diagnosing things, fixing things…
Furthermore, a personal carer recounted the consequences of suggesting a ‘maybe’: C2: (ii): …I’ve been caught many times by just suggesting something and they (family) go up and they said “Nurse (C2) says Mother needs this”. Then I’m in the office for putting my nose in..But all I said was “Maybe..” …I’m in the office being told, “You’re not to tell relatives this and that”…
Clearly, personal carer’s advice is not to be given. The personal carer’s role is attending to the tasks of care (hands-on) whilst the nurse’s role is advisor (information gatekeeper). This personal carer role as perceived by the personal carers at D, is equally understood by some residents’ families: D1: We’re only there to do… D2: …that duty D1: To do for that family member, not to get an emotional attachment.. D2: Like I said, there are some relatives that just come in and you know you’re the therapist or… DD1:…you’re the carer or just to clean up...
The clinical reality of the role differentiation that creates the well defined division of labour and consequent division in discussion was evidenced by what a carer wrote in her journal: A8: DE: If any of our residents’ families ring up and ask about their family we usually get our team leader and they talk to the family. If I do have to talk to the resident family, I would probably just say he/she fine today and let them know that there’ve eaten a good breakfast and has had plenty of fluid.
However, a sentiment amongst the personal carer group was that whilst systems exist that delimit their role as just doing care tasks, the care providers are more than doers: D1: …We are still very tuned into them ..So, nursing doesn't stop at, irrespective of what the government thinks, at changing them, showering them and just attending to their personal hygiene and feeds. It's the emotional needs, the stimulation that's very important because they can drift very quickly down if there's no up!
C3: (ii): We try to give care to these people – physically, mentally stimulate as much as we can. Our job is more than just washing them and feeding them. I think we do quite well.
Carers perceive their role as one that includes tasks (the doing and the hands-on) but also meeting emotional needs and consequently establishing an emotional attachment. 6.2.2
Division of disclosure
The following conversation reveals that the authority governing the care circumstance decisions generally and therefore the decisions surrounding the management of information, rests with the nurse (team leader). As such, a division of disclosure exists. The following was said: A2: If you know the resident that well you know whether they could cope with the truth or not.. ANL: Exactly…that’s what its all about..
Consequently, the researcher asked the group to discuss ‘..a situation in which you make the decision about whether or not (a) person can cope…’ A6: … I make me own decision...I decide me self.. … A7: But I think we don’t go against the team leader..I don’t think most of us go against the team leader.. ANL: That’s right, that is wrong. Exactly what you just said is right, but most good team leaders rely on your information that is fed back by them. I say to you: “What do you think, what is your opinion?”. We do that all the time, because you know them (resident) that tiny little bit extra than I do.. A8: Because yeah, the team leader gets that final decision.. ANL: ..you’d never go up. You’d never do. You’d be in head office..
The group continued: A2: …(T)here is steps you go upto, if you felt someone hadn’t been told something and could handle it-that they could handle it, and a team leader was firm: “No, no”. And you knew well, and you spoke to the team leader and couldn’t make them understand you’d discuss it with someone else..
This information gate-keeping role of the nurse might be challenged if the carer disagrees. However, discussion about this in a later section (see: Residency) reveals that the care providers are aware of the hierarchical nature of the aged care facility. This was expressed by the nurse in this same discussion: ANL: See a lot of this ..the Doctors play a big role in this, an extremely big role because that’s when you go through your pecking order and ethics and.. you know what I’m saying (directed at researcher), the profession. You know there is a professional ethics that we..as a team leader.. AT: Tell me.. NL: Ah, well you do know. As I said, you’re a registered nurse, so I mean that come a lot into it…very much so, ethics..
The nurse makes clear to her colleagues (and the researcher) that the information management process resides in an established culture, a ‘pecking order’, an ‘ethic’ comprising the doctor, the nurse and only then the care providers. Clarifying the meaning of the ‘pecking order’ in the follow-up interview, ANL said: (W)ith the pecking order they’re (resident’s) first. ..I think probably you have the doctor, the team leaders, the registered nurse and they’re in-line, as I said they’re professional, and then you have the carers who look after them (residents)…Its organisation. Without it there’s chaos.
The hierarchy is defined. Personal care providers here understand that decisions about a resident’s capacity to cope with truth-telling, to ‘handle it’, and therefore to disclose or not disclose rests with the nurse (team leader – in this case ANL). The personal carers’ role restriction was further underscored and confirmed in an interview in which it was said: DCI: (ii):… (I)t is not their role to talk to doctors or talk to family, apart from things like ‘Mum needs a whole lot of new singlets’ - not to say “She’s on this medication or she’s not on this medication”.
However, in the C group the relative does question the carers in the face of senile deterioration of the resident (relative). C2: That’s when you find the relative do ask you on a personal level, you know: “What do you think is going on”? C3: And we get friendly with a lot of the relatives. C2: And that makes it very hard, because you really want to tell them the truth. Say “Look you know I don’t think your mum is going to be here tomorrow”, or… C3: But I think they know… C2:I think, well I do. C3: Yeah. C2: I tell the ones that I know, I mean we are not suppose to, but you do. C3: Yeah.
In this clinical reality, the relative engages personally with the carer. In this moment, whilst there is an honest appraisal and possible acceptance of the resident’s circumstance, the personal carer’s role understanding means that this appraisal and acceptance must be shared either through some mutual pretence, suspicious awareness or by the carer breaching their communicative role restriction. Further to understanding the meaning of ‘I tell the ones that I know. I mean we’re not supposed to but I do’, a carer explained at interview: C3: (ii): You do sometimes when its somebody you’ve known for a long time…You know too if it’s a relative that’s, well I don’t know when I say difficult’, there’s some that you could say it to and some that you wouldn’t…
In the context of death and dying (that is, the ‘it’ in the phrase above, ‘could say it to’) the carer moves across the division of disclosure: C3: (ii): (Y)ou can’t help but say, ‘Well, they haven’t got long’. Or if they say ‘They’re going aren’t they?’ You say ‘Yes’, because it is. You do know.
The C group’s knowing as friend makes it hard for the carer who wants to openly share an opinion. Her role perception dictates she cannot, but premised on relative’s suspicious awareness, she does. The D carers perceive a role definition that conflicts with family role(s) when confronted with death disclosure: D3: We had a person die this morning, where the family ..asked us and we said “Look she hasn’t got long to go, go and make your peace with her”. D1: We tell the family they better come in, because your Mother is dying. Why can’t we tell that person that is dying - “It is now your time”. D3: Well I know that I tend to do it.
It seems that they feel they ought to be able to openly disclose information about death (and do so) to the resident, despite the role restriction. This view that some carers do disclose although it is the family’s or nurse’s role, accords with the previous role tension expressed by C2 and C3 above. That is, carers ‘tell’ even though they are ‘not supposed to’ – tell family although their role dictates that the nurse or some other (family member) ought to. 6.2.3
Role tension and frustration
The personal carer’s role tension and frustration emerged as a product of the rigid role restrictions that assign to them doing tasks and suppresses their capacity for disclosure: D3: … she was clutching at me, pulling me down on the bed. “I’m going to die, I’m going to die” “Yes you are”. “God’s waiting for you. You’ve had a lovely long life”….She just accepted then and just lied back on the bed. It just seemed like she was at peace…. And at the time I thought “Gosh, have I said the wrong thing here?”, but I don’t think I did. I don’t have any fear in that. You know I just felt it was time to be said… AT: What is the barrier there? D3: I think its because you’re stepping into someone else’s territory…
Personal carers recognise that their role and the perceived role of others confers upon the family and/or nurse (team leader) the claim to openly communicate death, dying as bad news. However, in practice, this is not always the case. Asked about how the personal carer felt about the division of disclosure – in this case nondisclosure, the B group added: B5: Frustration there that the family didn’t tell them, and frustrated because you can’t tell them because it’s not your place. You accept the family’s decision from that and the doctor’s, whatever, whether that person should be told.
B3: And yet you are coping with the behaviour… .. B5: Because they (doctor, nurse, family) are not the one who is coping with that person are they. The team leader, the doctor, they are seeing to other needs for that person, you are seeing to really to the personal needs and emotional, physical needs of that person. B3: Emotional needs…
Carers want disclosure but accept that their role is to follow orders. Theirs is not a role that is always true to the ‘resident as priority’. Family, or doctor, or nurse (team leader) are fact-controllers whilst carers perceive that they manage the resident totally, as a human being comprising physical (somatic) and emotional (psychic) components. The personal carers here suggest the consequences of the rule ‘Don’t Tell Mum’ are matters that they alone must manage. This work falls outside the realm of the nurse, doctor or family (further data support and discussion about ‘Don’t Tell Mum’ appear later in this section). The role tension and frustration experienced by the personal carers was similarly described by a physiotherapist who reflected in her journal: B3: DE: Mr W is a charming, quite lucid gentleman and we enjoyed a good chat about his health..He was a little ‘fragile’ emotionally, quite understandably and was very appreciative of the time we spent talking (approximately 45 minutes). He said to me: “I must be keeping you from your work”. To which I replied: “No, not at all – it is a pleasure to talk with you”. This was quite true, but I did feel guilty for spending so much time with him, as the pressures of time are always great. Then I become somewhat angry at the management/powers that be – surely this 1:1 time is what our elderly residents need and thrive on the most? (A few less $$ on the facilities and more on the staff ratios).
What communicative strategy is employed here and what does it say about truthtelling? What the therapist says is ‘quite true’ – that is, entirely true. The resident’s question is answered through her telling the truth. However, the therapist ‘feels guilty’ – that is, feels responsible for or remorse for what she considers is a wrong. This wrong is the expenditure of time with one resident whilst knowing she needs to distribute herself (a scarce resource) amongst other residents with an even less quantity of time (a scarce resource). So, the carer responds to the question with an entirely true response. However, what was said does not express what the therapist felt. A nurse concurs. In the nurse’s case, when questioned by the resident’s mother, the carer diverted the discussion, so avoiding a reply: BJS: We were caring for a terminally ill man who had had his gastrostomy feeds ceased. I didn’t agree with the decision. I didn’t say. The resident’s mother asked me, “I have done the right thing, haven’t I?” I said neither yes nor no, but turned the conversation back, focused the conversation back onto the mother.
The clinical experiences of the physiotherapist (B3) and the nurse (BJS) above
highlight the communicative strategies each care provider employs. In each case – neither care provider expresses what they would desire. 6.2.4
Managing the division of disclosure
In the extracts that follow, a number of personal carers describe how they manage the division of disclosure in their clinical practice. Whilst it is not claimed that the personal carers do not refer persons on to the registered nurse, it is the case that such a requirement provides the carer with disclosure dilemmas. D1:.. Now, we've spoken to… the RN. Its not up to us, the carers, to speak to the family. There is where the line is drawn.. we are doing the hands-on. We aren't the ones who can speak to the family.. this particular relative is quite intrusive and he will single out a nurse…He's trying to find out something, because he doesn't believe the team leader's telling him the truth. D1: There is a line and I'm not in a position to answer that. "Oh, why? Why not? Is it really bad?" "No. I think you're going to have to ask the RN that question?" "Oh, she just gives me the run around love…You would tell me the truth, wouldn't you?" "I can't". "Oh, so there's something to tell?"…"No there's not" AT: Ok, in this specific situation when you say "I can't", is that because you don't know? D1: Oh no I do know. (A)s soon as we see him we all disappear. He puts us in an awkward position, because we don't wish to tell a lie. – He’s actually setting us up to tell a lie. … D1: It becomes a game actually. It's like chess. He makes a move and I counter move it.
A personal carer describes the communicative combat she engages in as a consequence of the communicative role limit – ‘the line’. This ‘line’ divides disclosure and discussion from doing care tasks. As the ‘hands-on’ carers, the personal care assistants identify problems with the resident that they, in turn, communicate to the nurse (Team Leader). The personal carers describe themselves as hands-on carers and recognise this role as separate from the role of the nurse who is singularly responsible for communicating care issues with the family. Personal carers perceive that the resident’s family (or member) seek out information from the personal carers because the relative doubts the veracity of the nurse (team leader). That is, the resident’s relative is suspicious or needs re-assurance. Recognising that the personal carer cannot openly communicate to the relative what they, the personal carer, knows (because of ‘the line’) the carer engages in a communicative game of chess – communicative combat. That is, they are caught in a word play of moves (statements of truth but not openness) to which the relatives responds (further questions) and the personal carer counter moves (neither confirming nor denying). Confirming the existence of this communicative combat, a
personal carer at another aged care facility described it as a ‘vicious circle’. In her care role of establishing a relationship with the resident’s relatives, a personal carer recounted: C2: (ii): ..I’ve heard them (resident) say ‘Go and ask (C2)’ The residents send them (relative) out to ask (C2) and I say ‘Oh, you have to go down and ask the RN’. Sometimes they’re only simple things that you could answer but if you answer them they’re likely to say, ‘(C2) said Mum should have a suppository tomorrow’ Then the RN, some are really good, but some will come up and say ‘That’s not your job. We do that’…So you can understand it’s a vicious circle and it goes round and round.
In addition to the communicative ‘chess’ game, the D1 personal carer spoke and wrote about the following: D1: (A) lot of the residents have to leave their much loved pets behind…When they (family) let you know that the dog has died and ..resident will say, “Can‘t wait to see Toby” (carer laughs) and you know damn well Toby’s dead. AT: Yes D1: “How is he?” I don’t feel that’s - that’s not my responsibility as such to say, “Toby’s dead”. I think the family’s taken over that responsibility of looking after the resident’s pet... AT: Yes D1: …it’s up to them to tell them. Again, “The last I saw of him he was fine”. Which is the truth! Because I haven’t seen him since the last visit. The fact that I know he’s dead.
An additional strategy is obfuscation. That is, “implying a false conclusion” about what is known to be true. This same carer offered an additional insight confirming the practical implications of the personal carer’s role: D1: (W)e give the truth to the family of the resident too, because they will ring up and say, "How's Mum?" AT: …and… D1: I buck-pass AT: OK… D1: I know that Mum's just been given a whack of oxygen because she's choking on mucus. AT: Why do you buck-pass? D1: Because…ummm… I don't feel it's my position. It's a Senior's position.
Elsewhere, a personal carer clarified with C3: (ii): There’s certain things we can’t tell them (residents) anyway because we’re not medically trained. So that lets us off the hook really. Even if relatives want to know things, we pass them off the RN’s (registered nurse). So that lets (us) out of a lot of those sort of decisions.
Reiterating the nurses’ role, the personal carer does not disclose over the telephone the resident’s health status. The carer ‘buck-passes’ – that is, says nothing and seeks out a nurse (‘senior’). Understanding their role as forbidding the exchange of information and openness, the personal care providers’ communicative options were
further confirmed and described within the follow-up interview with C2. As with the previous D personal carer group, C2 confirmed: C2: (ii): (I)t’s awful, because, I’m really quite fond of (a few residents) and you know I talk to their families and they do put (me) on the spot and sometimes, you know, what should be done and you tell another lie and say, “I really don’t know”. But you do know. But you still think it’s best that they go to maybe the office or management, you know.
The carer’s role obligates her to deny knowing what she knows to be the case. Additionally, being ‘put on the spot’ by the resident’s relatives who ‘..still come back and ask you –“The RN said this. Is that true?’: C2: (ii): ..And they’re ..standing there – “Well?” And if you don’t believe it, what do you say. “No it’s a load of crap?” You say, “Oh well, it could be..”
Alternatively, the C2 personal carer described a situation in which a resident’s daughter ‘kept asking’ the carer: C2: (ii): …I said go and ask the sister (registered nurse). She said “Well, she’s not telling me anything, she’s not helping me” I just kind of looked at her. I didn’t outright say it. You just communicate, without actually..they can’t say you’ve said it. I can do it with my face-something like “She’s (resident/mother) no good” or something like that. So they know. Sometimes they need to know.
The resident’s relative’s informational needs are not being met by the nurse. Consequently, the personal carer communicates what she knows about the resident’s deteriorating health as requested by the relative without speaking and thus in her belief without contravening her role restriction on (verbal) communication with resident’s relatives. However, whilst the personal carer may manage disclosure through communicative strategies as described above, a colleague elsewhere concedes that personal carers ‘take over’ and consequently silence the resident: B2: (ii): I think we take over. Instead of (us) going upto the family and saying, “Ethel’s got the flu”, we could maybe say to “Ethel…(Y)ou might like to talk to the family”. Give them (resident) the opportunity, …to do it for themselves… We can sometimes take over. We never stop to think, “Hey”…I think that sometimes we forget. We do everything else and just continue on and we almost have their thoughts for them…
The carer reflects that carers ought to encourage the resident to take control and speak on their own behalf, otherwise: B2: (ii): (E)lse what can happen is that it ends up the family don’t go and ask them, “How are you feeling?” They come and ask us, and we tell them and we have a wonderful relationship with the family and this poor little statue over in the corner is…you just about gag them.
The personal carer’s insights and understanding mirror the understanding of the nurse (ANL) who contends that ‘we are natural born controllers’ (see next section: Role of the Nurse).
6.3
Role of the Nurse: Happy Good Nurse
Not unlike the personal carers, nurses articulate their role traits as being good and always striving to be and make others happy: ANL: (ii): You want to be a good nurse, the most important thing as a registered nurse or carer is that you don’t do harm…. We want to make (residents) happy… CPJ: I have lied about ten times today…Someone asked me today if I was happy and I said yes, which is a lie. Someone asked me today if I wanted to be here and I said yes. That was a lie…(Y)ou do that, I think, because people expect you to be (happy). And I always try and I always try and be positive.
At A the nurse (team leader) envisages the nurse’s role as one in which the aim is to be good, understood as both benevolence and non-maleficence promoting residents’ happiness. The C nurses in the company of the nurse manager understand their professional selves to be ‘positive’ and ‘happy’. The nurses’ role expectation demands a positive, cheerful disposition. The group continued: CPJ: Because I had a shitty day yesterday. And I was working here to 11:15 last night and I was really tired and when I come in this morning this is the last place I want to be. So, but…
The tired worker is self-sacrificing. As the D nurse manager confirmed in an interview, when feeling ‘bad I don’t show it’, because she considers herself a ‘role model’. Consequently, she acknowledged that, ‘I probably deny my own needs at bit at work’. Furthermore CPJ: (B)ecause I am the manager here as well, you have got to set an example. You are a role model and you can’t come in and say: “God, I hate this place and I don’t want to be here. I’d rather be anywhere else but here”. You have got to stay positive…
At interview, the C nurses added: CAH: (ii): ..I always try to be positive when I come to work, not bringing in problems I might have at home…I’ve always tried to just be positive in front of relatives. CAS: (ii): (Y)ou are a role model. You have to set the example for the personal carers…you’ve got to be a positive person, makes your residents positive.
Professionalism dictates that regardless of how one truthfully feels, the nurse models a positive demeanor. Additionally, CAH: I mean the staff here are amazing, really. (CAS) been really really ill and she has just come into work, because she knows that we have just had so much short of staff. (T)hat is to her detriment really because she should be looking after herself.
CPJ: (T)his is a prime example of what nurses are like..we ..are really giving and caring. I mean that is what it is all about.
The nurse manager and nurses describe the nurse’s role in aged care as selfsacrificing – putting one’s own well being behind the care requirements of the residents’ and the labour needs of the institution. As with the personal carer, one’s role demands that the care provider is ‘giving, giving, giving’ (D1). 6.3.1
Domain of disclosure
As understood by the personal carers, the decisions surrounding the management of information and disclosure rests with the nurse (team leader). As such, a domain of disclosure exists. A registered nurse described ‘the line’ as it defined discussion and the sharing of information amongst the personal carers and as it can be experienced to include the doctor. A nurse wrote: BCT: DE: Exploring truth-telling leads off in many directions and it has been difficult sometimes…lines definitely have to be drawn in both information handed out to staff and also communication between personal care staff and relatives.
Asked to clarify this journal entry in her follow-up interview, the nurse added: BCT: (ii): I guess there’s that line with doctor’s too…The doctor has a final say .. If he’s made a decision especially if I don’t agree with it, there’s no way I’ll be talking to the family about it.…. .. BCT: …(I)n the case of the man with cancer and a stroke..The wife ..couldn’t understand.. There was a picture that she was trying to get. I think if he (doctor) had been willing to tell her that the cancer had re-surfaced and was untreatable, I think she would have felt better because she couldn’t make sense of some of his symptoms…I was going to tell her and some of the other registered nurses were shocked that I would, because they said that was crossing the line. So I didn’t and in the end he did, because she asked him straight out and he couldn’t … So he was asking us to lie on his behalf and he hadn’t had a meeting with her…
The nurse above recounts her experience of a doctor’s decision ‘not to tell’ and the expectation that the nurses adhere to this request. Making a distinction between herself (implying a younger, university educated nurse) and ‘older’ nurses, this nurse was reminded by her ‘older’ colleagues not to breach the doctor’s order restricting openness about the resident’s condition. The interview continued with the researcher asking ‘So what was he actually saying – Just don’t disclose? Is that what you mean?’ BCT: Don’t tell her that we’ve done tests to find out that the cancer is back. Don’t tell her what the symptoms are. AT: But eventually she confronted the Doctor? BCT: And he didn’t lie. But if she didn’t ask that question, he wouldn’t have said. He was expecting us to sort of ..
The truth is disclosed to the resident’s relative only when the doctor is questioned directly. The nurse (BCT) reveals that the ‘lie’ she and her colleagues promulgated was established through silence (‘we weren’t saying anything’). In the absence of the relative’s direct question, suspicious awareness prevailed (‘she knew you know’): BCT: Yes. But she knew you know, the fact that we weren’t saying anything ..we never did give any information back and the fact that suddenly this door was closed. But see I probably would have crossed that line and I think now it definitely was better not to …
As this nurse identified ‘the line’ existing between herself and a doctor (albeit a doctor thought to be of the ‘old school’) the researcher was prompted to seek her understanding of ‘the line’ as articulated by the personal carer(s). Her understanding of ‘the line’ that delimits communication for the personal care providers was thought to be ‘probably policy’ and ‘sort of expected’: BCT: I think its (the line) drawn by … it’s probably policy actually. If you looked into it, under their job descriptions, they wouldn’t really be permitted to liaise with the doctor or anything. But it is sort of expected too I think. The girls (personal carers) here wouldn’t expect to be asked by a doctor about anything. In fact they (personal carer) refer very quickly…
The C nurses group concurred. Spontaneously suggested within the discussion by the group, the researcher asked ‘Talk to me about truth-telling and your interaction with your juniors’: CAH: I will tell the staff when somebody if very poorly and those are the sort of words I will use. I don’t always like to give them too much medical detail, because I am not quite sure what they are going to do with it. And if they misunderstand it and start talking outside residents room and they don’t really know what they are talking about… But I think as long as they see a general picture ...
The view about restricting the personal carers’ information was elaborated: CAH: (ii): …(I)f somebody is dying, again I wouldn’t use that word, but I will get them (carer) to do things and they will start to realise just how near to death somebody is.. CAS: I feel the same way…Because you have got to be careful because some staff will talk outside doors as (CAH) says or to relatives…
The group discussion continued: AT: When you say ‘because I’m not sure what they are going to do with it’… CAH: What are they going to maybe say to some grieving relatives. What are they going to discuss in the corridors with their colleagues, because the walls have ears. Anybody could be listening.
Elaborating, CAS added and clarified: CAS: (ii): (I)t’s misinterpreted back and given back to the relatives in a different form…I won’t go into details..They (carers) understand that Mrs Jones is poorly and they look after her – make her comfortable. But I don’t go into big medical terms and spill out too much…if you limit to just basics, then you’re right.
C AH confirmed the view of the personal carers’ capacity to comprehend and maintain the role requirement: CAH: (ii): (T)he personal carers don’t always say ‘I think you ought to go and see the RN (registered nurse)’ and then they (carer) are in the biggest soap drama…they don’t have the comprehension..
The carers are given limited information about the residents. The nurse judges that the personal carers risk misunderstanding ‘medical’ detail and a ‘general’ picture is sufficient. In practice, personal carers work from this ‘general’ picture. This ‘general’ picture - free from medical detail accords with the carers’ view that they ‘…tell us what we need to know to do our job’ (C3). There is a belief that carers do not have the capacity to comprehend the resident’s complete ‘medical’ history/pathophysiology. For example, as CAS understands this, the personal carer tells a resident’s wife that the resident has a ‘chest infection’ when the nurse knows that the resident ‘is a bit rattly’ because he ‘keeps a lot of phlegm in his throat’. Additionally, the nurse (team leader) controls the quantity and quality of information to prevent personal carers saying things that may be overheard by the residents- information that may or may not be correct or they may or may not want to be passed onto relatives. The group continued: CAH: I would rather teach them and oversee them give that person really good care…
This group of nurses (team Leaders) understand that the caring role of the personal carer entails performing the physical tasks, the ‘hand-on’ management of the resident. Care of the body (soma care) is the domain of carers. All other care, care of the mind (psych care) and in addition, information management and the family care is the domain of the nurse. As a nurse manager from another residential aged care facility put it: BAN: We give the carers basic information based on our judgement of their limited knowledge and comprehension. They would discuss with residents basic cares rather than specific treatments.
Furthermore, nurses (team leaders) are trusted to keep confidential information (with careful consideration). Carers are not: CPJ: It’s even the residents confidentiality too.. CPJ: I mean you have got to protect them as well. (I)f the resident said something to me in confidence, I have to really think carefully ..I would
probably tell a Team Leader but I certainly wouldn’t tell a carer..Because you know it would go around like a whirl wind… You have got to be really careful with the information that you have….
Additionally, the nurse manager reiterates a suspicion about the carers’ misuse of information. In an interview, a colleague stated that ‘you do know the carers you can trust…but there are a lot that you cannot trust because it is discussed out’ (CAS). Apart from the view that carers are unable to comprehend ‘medical’ information, there are carers who cannot be trusted to leave information control within the realm of the nurse. Furthermore, as with the personal carers’ perceived diminished comprehension of information, a perception exists that resident’s families don’t understand: DJJ: …If my Mum or Dad had dementia and someone said to me: “Well Mum and Dad are doing this”…from my nursing background I can sort of rationalise it all ..(W)e are trying to ..think what it must mean to the average person on the street….(S)uddenly Dad, who they have absolutely adored all their life and thought has been the most you know upstanding man and that gentleman suddenly being told that he is doing things, is sort of like: “Oh my goodness”, it’s sort of not…
This nurse manager contemplates the resident’s family’ inability to understand the care circumstance. Additionally, the resident’s family are perceived as incapable of coping: DNB: With things that their relatives try and absolutely totally unable to handle … we are nurses and so we can deal with the things the average relie’…. yeah, ok so they are not the sorts of things that a person who is in their right mind and right physical ability to deal with it, would ever want anybody to deal with….(W)e are the carers, we are trained to deal with that sort of thing. The family isn’t. .. DNB: They can be absolutely horrified that Mum and Dad would whatever, where we take it in our stride. OK you know, that’s part of the game. DGS: Hmm, mm.
Knowing about a howling resident cannot be dealt with by the family but is manageable for the nurses. Similarly, knowledge about a soiling resident cannot be handled by the family but is wholly manageable for nurses. Consequently, the family ‘don’t need to know’ nor does this – these ‘situations’, ‘concern them’. In the context of truth-telling in practice, the truth-omitted is ‘handle it’ truth and ‘it’ comprises the world of work of carers and nurses (‘the game’) in aged care. However, an additional follow-up interview revealed that consideration is given in some cases to the personal carer’s level of competence. A nurse manager responded to the researcher asking at interview ‘(C)ould you clarify for me the role you believe personal carers have in disclosing personal information?’:
BAN: Personal carers … there’s a great range in competency…there are people who can be part of the team to the extent where they can relay information and deal with residents as registered nurses can, so they don’t have to be a registered nurse to be part of the sharing of information. …I myself ask that in the majority of times, families do go to registered nurses, except in the case of competent personal carers and I don’t have a problem with them dealing with it, if I’ve ascertained that they are competent to do it. … BAN: …there are some personal carers that have a knowledge and the interest in the resident and they have a right to the care plans and to the knowledge that we have. I tend to, where people are interested, share information and would accept that level of competence in that person and respect them for it.
This nurse manager, unlike her colleagues at C, understands that amongst personal carers there exist degrees of competence. In ‘some’ instances, the personal carer becomes ‘as a registered nurse’. Therefore, the personal carer enters the domain of disclosure. Consequently, the residents’ relatives can ask the personal carer for information – unlike most personal carers who according to institutional policy are ‘not supposed’ to share information (other than about ‘numbers of singlets’) with the family. In ‘some’ cases the personal carer becomes ‘part of the team’ such that the carer has a ‘right’ to the resident’s care plan, and therefore the personal carer comes to know what the registered nurse understands. 6.3.2
Managing the domain of disclosure
What follows integrates the roles as the nurse understands them and how this understanding impacts on what they tell or do not tell residents, family and personal carers. Nurses do not disclose to families incidents or health status changes that (1) are either a continuation of an incident or change, or (2) perceived to ‘worry’ the families or increase worry or (3) deemed by the nurse to ‘bother’ the family: DGS: I think it depends on the case. If a person, say they are falling all the time… and they have another fall, well I wouldn’t go ringing the family and bothering them and worrying them, especially if they are worried already, unless there was something specific and they have had a fracture…(W)e have got to use our common sense and not increase the families anxiety anymore than it has to be got to….
Information about incidents or changes is shared when the incident or change impacts on the resident’s prognosis. Nurses role perception is that they ought to promote and sustain contentment amongst the resident’s family. This discussion continued: DNB: See that (DGS above), in light that’s not not telling the truth. It’s not worrying relatives about information that they can’t change and isn’t, shouldn’t have to deal with it. That is our responsibility to deal with stuff life that. And if it is not going to make any difference to the long term care or, it
just seems, it is not lying, I don’t see it as lying to not tell the family something that’s…. DGS: That doesn’t concern them.. DNB: …(T)he family can’t do anything about it and all it is going to do is upset the family. But it isn’t going to alter anything from the point of view of the care or the persons prognosis or anything like that.
Not telling the family about low or no risk alterations is described as ‘not not telling the truth’ nor is it ‘lying’. Within the nurses’ role, this is rationalised on the grounds that it is not for the family to concern themselves with matters about which they can do nothing. Acting on and concerning oneself with these low/no-risk changes is the domain of the nurse. That disclosure is not open and details are omitted, are well supported in the data. However, here the nurse is remaining silent. The action and reasoning support the general view that nurses can ‘see more than the relatives (what the person is like)’, that they are best placed to know how to manage the resident and, after all, the care provider is family. These nurses are the merchants of communication who are responsible for the cargo of information – for benevolent reasons. A nurse colleague from the D group above added: DCI: … (T)he family ..by knowing that piece of information and there is nothing they can do to fix it, and if it was going to make them feel better, I would tell them. But if it is not going to make them feel better, and it’s not going to make any difference to the resident, then why bother? All it’s going to do is upset them. Everybody’s got full lives as they are..
It is apparent that the nurse and her colleagues agree that truth disclosure (open disclosure) about a resident event or behaviour will not be disclosed to the resident’s family ‘if it is not going to make them feel better…’ or ‘it’s going to…upset them’ (see: Residency). Therefore, the nurse aims to keep the family happy. The C nurses group agreed: CAS: Exactly. And same with relatives. You don’t want to hurt their feelings about something so you sort of tend to, ummm, not tell them the total truth but sort of edge around it a little bit so that it becomes less painful for them. … AT: Can you give me an example - … CAS: Well if you have received information that a person’s condition, a residents condition -you know how bad it is, but you’ve tried to sort of play it down a little bit, not totally, but just a little bit to the relatives, so that it doesn’t seem quite so hard.
To protect resident’s family’s feelings bad news is buffered. That is, the whole truth is tempered (titrated) and elements of the whole de-emphasised or omitted. CAH added:
CAH: (ii): (Y)ou’re painting a certain amount of the picture and you’re leaving space to add a little bit more..You can choose your words carefully.
Additionally, this idea of ‘edge around it a little’ (CAH) was articulated as a benevolent lie to a competent resident’s relative: CAS: (ii): …I often get in my section when one of the wives (relatives) goes away and she’ll say to me ‘Did (Brian) miss me?’ I can’t just say ‘No, he didn’t’ ..that would upset her. So I say, ‘Oh, yes, every now and then he mentioned your name’.
In discussing the disclosure of information to a family, the group said: CNB: For example you can’t tell family members about a lot of the behavioural things that happens because, I mean how can you tell the wife and the children that father has pooed all up the wall and finger painted and whatever? I mean that’s very demoralising … AT: I am the son and I say to you: “How has Dad been?” … DNB: Well you have to ignore those sorts of parts and just say you know basically what he appears at the moment...basically he is OK. DGS:..(I)f he has been nauseous or… whatever, you can give a medical picture. And you can tell them, you know tell them the truth in that way. But you don’t have to go and tell them every minute detail like you were saying about their incontinence.. DNB: You tell them facets of their patient’s condition that aren’t going to steal their impression of their father, but that are realistic…(i)f a person can’t be enhanced by what you are telling them and it doesn’t really alter the longterm treatment or goal or whatever, does it really hurt to not tell them..
Nurses and the nurse manager omit details, fail to disclose to a resident’s family members resident behaviours deemed by the nurses to be diminishing to the image of the family’s relative. Rather than provide such detail, they focus on the immediate resident status. The details that are omitted are considered of no consequence to the overall treatment plan and consequent care outcome. DJJ: I mean you wouldn’t keep back anything that was absolutely vital for them to know, but you might just ease them into the idea that Mum is dying or Mum is becoming more demented….They don’t need to know that nitty gritty, so you can say, “We are having a bit of trouble with Mum and she’s doing some sort of strange things…”. And in the end you absolutely spit chips where they have gone into them (resident) and “Oh Mum stripped all her clothes and sat out there.” And I mean that is just the bit you try to save them from. That nitty gritty of what they don’t need to know. You know like Mum was smearing poo up the wall. Yet they walk in and Mum is doing that….I guess you, like the filtering system under warranty you know how much they can take and how much is necessary, so I guess you do it with the best intention, but you do it relatively carefully.
The nurse manager identifies the truth omitted as filtered information. Either understood as the ‘nitty gritty’ by the nurse manager when referring to the resident’s family, or the ‘niddy biddy’ by the nurse when referring to carers (CAH). In
discussing disclosure of information and carers: ANL: (ii): ..If someone says ‘How’s Mum?’ or ‘How is she today?’ or if she’s dying or whatever, they (carer) get the Team Leader…They’re never put in that position. AT: Because they understand that is not part of their role? ANL: That’s exactly right, exactly right….(T)here is a pecking order.. DCI: I think it depends of the person (personal carer). It certainly does leave it open to, you, know information being contradicted or …escaping that the registered nurse has just given out to the family. You know, the registered nurse is trying to be controlled … and then the only way to really safeguard that is to do what we largely do and that is to tell the carers not to discuss the residents condition with the family.. (I)t certainly does leave it open for.. sort of information with blatant sort of truth-telling coming out doesn’t it? And with players you have got to … DGS: Because they (registered nurse) are the spokesperson in the ward. They are in charge for the Doctor..
The nurse as spokesperson, guards and administers information. Carers are told not to disclose (share information) with the resident’s family. The nurse (team leader) alone has this responsibility. The role of the nurse – particularly the team leader as the manager or controller of information - is now well established in the data. Complementing this view about the team leader as being in control, the A team leader believed: ANL: (ii): We have to remember that they (resident) were or still are like us and we can’t make all the decisions for them. We can’t control them. We are natural born controllers. That’s what makes us good nurses… (G)etting back to being controllers. Don’t tell me nurses aren’t controllers. That’s why we do so well at our jobs…
Absent in the data in this section, Role (and generally) is a convincing emphasis on what is told or not told by the nurse to the resident. In this study, disclosure is the domain of the registered nurse who manages what information is shared or not shared with the personal carer and the family. However, in the context of telling – that is, sharing information with the resident, the nurses’ data are quiet. 6.3.3
Role of the care provider: Residents’ perceptions
Residents were aware of the afore-discussed division of labour and disclosure: B1r: Yes, but normally carers realise the amount of information they are allowed to give, and realise not to discuss anything in the way of your condition or even, I mean, if you ask them to do something which is outside their scope, they won’t do it. So they have to say I will refer you to the RN….
The carer’s ‘scope’ of practice is defined by a resident-recognised communicative role limit. Carers are restricted in what they can say to the residents and are expected to ‘refer’ the resident (and family) to the nurse.
Another resident described this ‘scope’ of practice as a ‘program’: E1r:…See they have this program here that if you have anything wrong with you, you don’t tell the carers. You tell the sister (registered nurse) who comes around, gives out all the medications. She’s in charge. It’s she who advises you of treatment or whether they should ring the Doctor or not. .. E1r: Well, now from this morning I had a bit of diarrhoea, and the carer that was giving me my shower, I told her that I had it and she immediately went and told the sister…If you ever tell the carers anything about yourselves, they immediately relay that to the sister. AT: And that’s generally understood? E1r: Oh yes, they don’t take the responsibility of it, the carers, of anything that’s wrong.
This resident recognises and describes the institution’s communicative division of labour, describing the process as a ‘program’. In the care circumstance, the resident observes and responds to this accordingly. Therefore, the resident understands that she ‘(doesn’t) tell the carer’ about her health situation but rather ‘tell the sister (registered nurse)’ who is ‘in charge’. The carer is a conduit for information. The carer’s task is to deliver the hands-on care (eg. showering) to the resident and to deliver information to the nurse. In this institutional task orientation to care, the registered nurse is a treatment advisor and medication administrator to the resident and the personal carer is a nurse informant. The resident recognises in the ‘program’ the hierarchical division of tasks and talk. The ‘program’ that defines the care providers tasks and talk was supported by other resident interviews. At B, the ‘program’ for information management was described as a ‘scheme’: B3r: (ii): …You have a good scheme to go through here…
Additionally, in the same aged care facility, a resident confirmed: B2r: …I wouldn’t expect day to day carers (to) know about ..certain things. I would expect the registered nurse to know about ..things and to discuss them with me. I think this place does quite well with that.
The task/talk or care/conversation dichotomy described as the ‘scheme’ or recognised as the ‘program’ is evaluated as ‘good’ and as operating ‘quite well’. However, what is important in making the ‘program’ for information management favourable is the residents inclusion and, at least for B2r: B2r: (ii): …(M)y daughter is involved in that…
That is, the exchange of information occurs with both the resident and the family. Elsewhere, the realisation of this ‘program’ that defines role responsibility is recognised within a group conversation assigning truth-telling ‘responsibility’:
C3r: As long as it (truth) is told by the right person. As long as an outsider doesn’t come and tell you the truth…. A person in authority should tell you. AT: …(A)re you saying in your circumstance that you expect to be told the truth, and you expect to be told certain things from certain people depending on who they are in the institution. C4r: That’s right..
Residents consider that the truth ought to be told, but not all persons are responsible for this. That is, residents’ understanding is that ‘a person in authority’ – a person known to know, would reveal the truth. ‘A person in authority’ as a bearer of the truth coincides with the perception that the nurse (team leader) role includes that of fact controller, but also that the doctor provides truthful disclosure. In keeping with the proposition that a relationship-role binary is part of a symbiotic relationship-role-residency trilogy, the care provider’s role determines that for some residents, the relationship is premised on doing a job and is not family nor friendship. A resident perceived a varying relationship with the doctor and carer. The doctor ‘has become more of a friend’. The researcher continued: AT: …How would you describe the relationship you have with the carers or the sister? E1r: Well I’ feel they’re doing a job. I haven’t, what I call made a real friend of any of them.. I talk about everyday subjects and all that, and my family. They’re very interested in what your family is. They’re very interested in getting to know your family…I don’t feel what I call a ‘true friend’. I wouldn’t bare my soul to them as it were. And if I don’t feel well, as I do often, I say ‘I’m feeling lousy today’ and that’s all. AT: Who would you choose to bare your soul to? E1: My two sons.
Personal carers and nurses (‘sister’) are considered as ‘doing a job’. This is a view consistent with the perception that carers are ‘hands on’, concerned with the physical or instrumental care. The emphasis was on getting things ‘done and finished’. Talking with the carers centres on ‘everyday subjects’. This social talk occurs when they’re making my bed. They don’t come in here and sit down. This all happens when they are doing their work… They’re very busy.
Additionally, the perception of the personal carer as the hands on worker was emphasised as these residents revealed: A1r: …(S)ome of them (personal carers) are very good. Some of them are just ordinary housewives that come in and…showering people. They learn how to shower – some of them do, some of them don’t… E1r:...I usually get up and use the toilet and then I roam around my room and tidy it up and do whatever I can to help them, so that when they come all they have to do is shower me. I have my clothes out ready for them…They
just do the absolute minimum of what they have to do for you. I mean they have to go and get the breakfasts.
Herein, the hurried personal carer with a task orientation, ‘emphasises getting things done and finished’. Additionally, this resident’s sense of relationship in which ‘social chit chat’ occurs during bed making – limits the personal orientation in the communication’. Consequently, opportunities for therapeutic communication are missed or fail to emerge which brings into question the carer’s capacity to fully know the resident’s ‘fears’ and ‘needs’ and ‘wants’. Consistent with the care providers understandings of and about themselves’, the residents perceive the care provider as cheerful protectionists. The carers’ and nurses’ roles are described as ‘cheering you up’: B1r:.. They always sort of cheering you up. … B1r: They get in with their own things that they do and their family themselves outside and they try themselves not to discuss any matters that might upset you, don’t they? .. B3r: That’s their protective angle coming out…the carers are protecting the patients. B1r: Oh yes definitely.
In the residential aged care context the emphasis is on ‘cheering’ the residents. The care providers avoid conversation topics that are perceived to be upsetting to the residents. Therefore, as this relates to truth-telling, residents concur with the care providers who fundamentally understand truth disclosure in the context of its instrumentality – what good will truth-telling serve? Therefore, the care provider’s work ethic, as perceived by the residents, resides in protection as guided by beneficence (above all, do good) and non-maleficence (do no harm). Offering a way to manage cheerful protection and maintaining professionalism relying on the Nurses’ Story: Caring for a woman who had Alzheimer’s, a resident reflected in the group discussion: B2r: It got me thinking about how you could maintain a truthful relationship with a person even though the person was distressed and had Alzheimer’s..it seemed to me that the way that that could have been advanced in terms of truth was for the worker to have come to the situation and said – instead of saying as she did, “Look your husband died a few years ago” - she could have said, “I know this is going to be hard for you to understand or remember but in fact your husband did die a long while ago, and you worked through your grief in that instant. You don’t have to work through that now”. I thought that if she came at the person with the total picture in mind, that she would have seen it, seen that the woman had difficulties and she related to that as well as the actual difficulty…
The resident understands that a professional care relationship contains ‘honesty in the relationship’. This manifests itself as engaging with the resident – even though the resident may have limited capacity for comprehension and retention of a conversation. An element of an ‘unprofessional’ relationship is one that attempts to ‘avoid the issues’. In this particular case, the ‘issue’ is the emotional outpouring that the nurse is confronted with by the patient. The resident perceives that a ‘truthful relationship’ is possible and professional, by disclosing the truth and being sensitive to how or the way it is said. The ‘truthful relationship’ is characterised by the carers engaging with the client’s ‘total picture’ – that is, past history and circumstance (husband’s death) and current situation (distress, tearful, anxious). 6.4
Role of the Resident’s Family: Disclosure Controller D1: DE: I have nursed a Resident who loved her dog. The family members who took over the responsibility of the dog/pet when their mother was admitted into the Nursing Home told me that the animal had recently died. The Resident would ask me if I knew how her pet was going. I answered that I did not know and the next time she had a visit from the family, she should ask them how he is. I did not feel that it was my position to tell the Resident about the death of her dog. I felt it was the family’s responsibility.
A personal carer wrote about (and also spoke about in the group interview) the family’s role responsibility to ‘tell the resident about the death…’ of the resident’s pet dog. In this personal journal entry, the carer assigns the disclosure role, the role of fact controller, to the family. Elsewhere, a nurse assigned this role to the family. In her Personal Journal, reflecting on the Nurse’s Story: Relative of a patient rings up, a nurse wrote: CAS: DE: … If a relative asks me not to say anything about their ringing up, I would look at the effect it may have on the resident…. … If the message from the relative was bad news I would not say anything to my resident. I feel that it is up to the relative to tell him/her…
6.4.1
Don’t tell mum
Consistent with the residents’ understanding and the view above, the care providers experience situations in which the family requests that the care providers not tell: CAS: DE: A situation arose the other day where one of my residents was in hospital after a fall… The wife rung up and asked me to leave a message for all the staff not to tell her daughter if she rung from ---. She asked me to make some excuse why the father could not come to the phone. I told her that she should tell her daughter because she had a right to know. If we kept making excuses the daughter would eventually suspect something. I did not know for sure what to do. I thought about the situation for quite awhile and discussed it with another Team Leader. I eventually did as the wife asked but still not happy with the situation.
This nurse in her Personal Journal wrote that when requested to withhold information intra-family about a resident that she, the nurse, accedes. The resident’s spouse’s claim for non-disclosure about her husband is given precedence over the resident’s daughter’s ‘right to know’. Contrary to her clinical action, the nurse (CAS) acknowledges the risk and consequences of ‘making excuses’ (lie to cover up) and the resultant suspicious awareness (‘the daughter..suspect something’): CAS: DE: I have been in this same situation as the daughter. Many years ago, when I lived in ---, I used to rung my mother every week. For over a week after ringing about 4 times and being told that she was out somewhere, I demanded to know what was going on. I had been imagining everything that could have happened, making myself sick with worry. My brother then told me that my mother had had a slight stroke but she was now okay. I was extremely angry with my family for not telling me the truth. Something they never did again.
At an interview, a carer’s experience (similar to the nurse’s above) with ‘Don’t tell Mum’ centred around the delayed disclosure of a residents death to the spouse (also a resident in care). In recalling the experience the carer recognises the implications for such delayed telling: B1: (ii): …(T)he husband died. The family didn’t want the woman told until the family came up hours later, so she didn’t get to say goodbye. She knew, I think she kind of knew,. When they came up, she was always different after that. I mean, she never got to say goodbye to him. She should have been able to go in and say her goodbyes..I don’t think that should have been done to her..
Ongoing evidence of the family’s request for non-disclosure (and the ramifications of such a request) was revealed in a lengthy passage from a D nurse manager: DJJ: I guess there is the situation where the family sort of says “Oh you know, can we not tell Mum this? Or can we sort of withhold this information from Mum?” I always want to know why they want to do it that way. There is something that they don’t want Mum to know… Therefore you know their expectation is that somehow we will tell a lie to cover up for them….
Clearly, resident-family cases exist in which the care providers are asked ‘Don’t Tell Mum’ or ‘Can we withhold information’. Research data reveal the residents’
awareness of these family requests. In the case above, the nurse manager perceives that the family expects the nurse to adhere to the request with a ‘cover-up’ lie. This response is evaluated as problematic. The nurse manager (DJJ) continued: I always want to know what I am dealing with and why they want us to take that angle because to me you just really get yourself into all strife. And that’s what some of the family want. And yet perhaps if you are honest with Mum about what you are going to do, it will be easier in the long run. But I invariably….
The nurse manager, when presented with the request ‘Don’t Tell Mum’, makes an evaluation. Non-disclosure and withholding as acts in themselves are evaluated against intention and consequences. Whilst lying to honour such a request may result in ‘strife’, honesty will only ‘perhaps’ result in less strife’ in the ‘long run’. That is, truth-telling emerges as less than a golden rule. The nurse’s narrative continued, further revealing a doctor’s complicity in the family’s request for not telling: DJJ: …(W)e actually had a family that they managed to get the doctor very much on their side … and said to the doctor: “Look if you discover something with Mum, how about you don’t tell her?”….(W)e had the family say: “No, no don’t tell her”…It was awful, because the patient would say, you know, “The test results must be back by now. I’ve been waiting for ages you know. Can’t anyone tell me what’s in them?” And first of all, it was sort of, “Well you will have to talk to the doctor about that”.
The case further exemplifies suspicious awareness in the company of nondisclosure. The withholding of diagnostic test results is judged as failing trust and was described as a ‘major lie’ (DJJ). Then of course she was getting fobbed off by the doctors, so what happened after a while was she didn’t trust any of us, because we was “Oh no, no they are not back” …
The care provider’s (‘we’) were part of the ‘major lie’. However, open awareness is a patient’s right that facilitates getting one’s affairs in order: …she’s got a right to know, and it turned out that she suspected she had cancer and the tests showed that she did have cancer. She wanted to get the rest of her life in order, and tie up the loose ends.. And not everyone is going to have the type of death that allows it to tie off his loose ends, …
Finally, concluding the Nurse Manager’s clinical scenario, a colleague asked ‘Wonder why they didn’t want to tell her?’: DJJ: (I)t was a long time ago, but I sort of figured that they felt that it was better for her not to know. That you know it was better if she wasn’t told but she really needed to know. I would be very angry if someone kept that information from me. Very very angry and that’s exactly what she was. She knew damn …
Like her colleague (CAS) the nurse manager identifies ‘anger’ as a consequence of such silence. This dialogue reveals ‘Don’t Tell Mum’ as set in the past and a legacy of an older time. However, previously (BCT) a nurse identified her experience with this in a contemporary context (with an ‘old school’ doctor) and ‘Don’t Tell Mum’ was discussed in the current care circumstance as a ‘Don’t Tell Dad’. A nurse at C discussed the probability of such an occurrence: CAS: (ii): If they’ve (family) decided they’re not going to tell Dad, then I won’t say anything. That’s their choice. I wouldn’t say anything. We’re probably going to have a situation very soon where that may happen…(Family) haven’t actually told him how sick she is…
Therefore, whilst research data may not reveal much about the practices of doctors, the suppression and control of information as a result of requests by the resident’s family ‘Don’t Tell Mum’ remains unchallengeable. Finally, dealing with a ‘Don’t Tell…’ request, a nurse manager detailed in her personal journal and follow-up interview a situation in which she was asked by an ‘anxious husband’ to stop his daughter from bringing the wife/mother (resident) home for previously organised and confirmed overnight stay. The husband/father ‘does not want her (wife) to know this is his wish’: BAN: (ii): I had to restrict the overnight stays, but that was it. That was explained to her (daughter) as well..It would not have been good for the Father and she understood that… I was able to give information that there was going to be difficulties for the Father if he took her home. So I was able to get information without disclosing what was asked not to disclose (to the resident/wife/mother).
Here, the nurse manager tells the resident (and daughter) via a half-truth. In a separate interview, a nurse colleague remembered the same case. Confirming the nurse manager’s insights, the nurse below uncovers the consequences of the case: BCT: (ii): I remember the case. It was never disclosed to her (resident/wife/mother) that her husband did not want her to go home but we did in the end tell the daughter… There was probably people that wanted the wife to know but very near the end of her life, do you really want her to know something like that?…I think she knew herself, she didn’t choose to discuss anything with any of us. So we weren’t very nice to her and that’s a case when you’re not, but is it really our place to come between couples?
Confirming a previous nurse manager’s insight (DJJ) the resident’s suspicious awareness results in a care provider relationship with an altered trust and, consequently a resident’s prevailing silence (withdrawal). 6.4.2
Role of the resident’s family: Resident’s perceptions
Families are expected to be truth-sayers: C3r: That’s right and your family... The family tell you the truth. C4r: They may not always want to do that. B1r: (ii): …I always insist on my daughter being present and if she happens to ring anybody up (about my care), I always ask her to tell me truthfully what she’s been discussing, which she does.
6.4.3
Don’t tell mum
However, residents’ in a group share their awareness that family will request ‘Don’t tell Mum’: C4r: Well they say: “Don’t tell mum!” (tapping finger on the table) C3r: “Don’t tell Mum!” C4r: Now that is common knowledge. That’s what your family say: “Don’t tell mum!” (tapping finger on the table) .. C3r: I want to know the truth C2r: I want to know the truth. It is my body. I want to know.
The resident’s family operate as fact controllers. As a consequence of this family role – in which the family acts with an insight into what is best for the resident/family member, a tension is created between the family and care provider’s roles. The residents’ insight into the family’s ruling of “Don’t Tell Mum” was further perceived as ‘quiet conversations’: C3r: You look at them and say: “Poor dear thing. I know what they (family) are talking about and they are not telling me”. C4r: That’s right. … C3r: …(Y)ou see them having quiet conversations in lowered voices. AT: Who? C3r: All your family…after you have seen the doctor they gather around in a group and..you can hear them….
The residents’ have awareness of ‘quiet conversations’ that they observe and hear after a doctor’s round. At interview, the researcher sought C2r’s understanding about these ‘quiet conversations’ since in the original group discussion she had not clearly expressed her view. She said: C2r: (ii): I agreed that they do get the family out(side). I didn’t agree it is the best thing to do. I agreed that she’s (C4r) right, that’s what they do.
The group conversation continued: AT: And so why do you think that the family are having these “quiet conversations”? C3r: Because they don’t want me to know. C5r: They don’t want to hurt you. C3r: They don’t think you can take it…
The resident is in this state of awareness because family invoke protection in the guise of therapeutic effect. The resident’s family considers the disclosure of
information to put at risk the resident’s well-being. Resident’s family’s telling the truth is understood by the resident’s to be thought of as a harm (‘hurt’). That ‘Don’t Tell Mum’ is for therapeutic purposes must be considered for its effect, as described below: B3r: (ii): ‘Don’t tell her, did you know so and so?’ and you know there’s something they haven’t told you. AT: So how do you feel? You sense them having ‘quiet conversations’ in lowered voices… B3r: You wonder what’s going on.. AT: You wonder what’s going on and how do you feel? B3r: You feel you’ve got something dreadful wrong with you
Residents’ insight is that whilst they have a general expectation for the family to tell them the truth, they are aware that this is ‘not always’ the case: C3r: That’s right and your family... The family tell you the truth. C4r: They may not always want to do that. C3r: No but I have always said ‘For goodness sake tell me’. C4r: Yeah but they don’t always do C3r: They don’t do it, no, ….
Residents have a suspicious awareness - an awareness that care provider data supports. Residents recognise that families do not disclose information premised on avoidance of harm. As with the care providers’ understanding, when truth-telling is perceived
as
hurtful,
disclosure
is
outweighed
by
benevolent
paternalism/parentalism. However, a group of residents at another residential aged care facility discussed the ‘hurt’ at discovering accidentally that something had not been disclosed to them. The researcher continued: AT: Ok, so you spoke about ‘being hurt’. ..(I)t is often understood by others as well, that it can be ‘painful’, ‘the truth can be painful’… B1r: So can ignorance be painful when you find out later that… B3r: It’s more hard for them (other), to be told something that you should have been told long ago. B2r: Yes AT: You think …(if) I am operating from my sense of protecting you from the painful truth – (this) is misguided it that the…? B1r: Yes I do. B2r: Yes B1r: It might be difficult for you but still I think you should, or anyone should tell, especially if it is a parent.
The resident B3r reveals the position: the parents (as residents) recognise that this action is misguided and the preferred practice is disclosure. Additionally, the family’s protection as a reasoning for non-disclosure to the resident is considered to be wrong. Whilst residents acknowledge that disclosure ‘might be difficult’ the siblingparent (resident) relationship is considered one where ‘tell(ing)’ is a requirement.
This discussion mirrors the C resident group’s discussion in which the residents recognised that in their roles as parent they utilise non-disclosure to protect their children from the truth. In the B resident discussion above, the residents do not want to be treated in a like way. Furthermore, complementing the care providers’ protection paradox – in which the care provider cites protection as the rational for the non-disclosure of the truth to others but would not have this performed on them, a resident at interview suggested: AT: (ii): Are you saying that there might be circumstances that an RN would need to consider whether a person could cope (with the truth)? B1r: Well, it depends on the individual .. AT: So you think that the RN, in some circumstances, needs to consider how the person is going to react? B1r: Definitely AT: Does it mean that the RN might necessarily be untruthful? B1r: She may be. She may not have the courage to discuss the condition with the patient and she has to be very diplomatic and therefore she might be different. But it’s not the truth and nothing but the truth. AT: What would you call it? B1r: Diplomacy.
Above, the resident understands that two conditions exist in which the nurse might be ‘untruthful’. Firstly, the nurse may doubt her/his capacity to deal with the consequences of disclosure to the resident (about the resident’s ‘condition’) – a view consistent amongst some personal carers in their understanding of disclosing that one is dying or about to die. Secondly, under the guise of ‘diplomacy’, the registered nurse ‘might’ choose a course of action that is ‘not the truth and nothing but the truth’. Rather, the course of action is ‘different’ from this. Herein, the resident suggests that just as the C residents in their role as parents rely on protection as a reason for nondisclosure, the nurse can apply a strategy that is something outside of telling the (whole) truth. This so, residents in this study would prefer that and whatever strategies considered to be under the guise of diplomacy not be done to them. Furthering the perception of protection, a fellow resident in an interview was asked to re-visit her reflection on the Nurse’s Story – Poor Old Gillie, in which the patient’s spouse asks that the patient not be told about his condition. The resident concluded: B2r: (ii): (Family) shouldn’t be considered more than the patient themselves, in terms of the relationship. The relationship will be with the patient and that seems to me (to) over run any claims other people have… AT: …(A) family member has a very loving and close relationship with the resident, and starts demanding what ought to be told and what ought not be told, and these demands (are made) of the nurse. What advice would you give to me as the nurse? B2r: I’d suggest you clear it with the patient..
Consistent with this resident’s previous views about knowing the resident as a totality – the sum of the now-person resident and the past-person resident, the opinion offered here about seeking to withhold information for another’s well-being is that the resident must be consulted. 6.4.4
Role of the doctor: Residents’ perceptions
Whilst care providers referred to the role of the doctor in making requests for nondisclosure (BCT, DJJ) (and as a member within the institution’s hierarchy; ANL) the resident’s data offered a greater insight. In a follow up interview, the researcher asked a resident to comment on an understanding from the group discussion, as follows: A2r:…I think they don’t tell the staff everything anyway. AT: The doctors don’t? A2r: I don’t think so – they might tell the RNs. But I don’t think they tell the (carers).
In a one-on-one interview, a resident made clear to the researcher her view about disclosure: E2r: …I do especially concerning my health. I expect complete truth for it. I don’t want them holding back just because I'm sick or something like that. AT: So you say you ‘don’t want them holding back because you’re sick’ E2r: Yes. Say my doctor said I was very sick, but she didn’t say what was wrong, how long I had to live or things like that, I’d want her to come out and tell me everything…
The role expectation for this resident is that information disclosure rests with the doctor, irrespective of perceptions about the resident’s capacity to cope due to ‘sick(ness)’. However, in some situations, doctors are perceived by the residents to be reticent about open disclosure of this kind. At the commencement of a group discussion, a resident stated: B3r:…Personally I think it is better be told so you can get on with you life rather than live in the dark. The other school of thought, should not be told, it’s a matter of protection to you. Protection health-wise, but I disagree with that. You’ve got to start somewhere. You have got to get on with you life and find out what’s wrong with it…
The resident recognises the protection but contends that disclosure is preferable as it facilitates self determination. Later it was stated: B3r: (ii): Knowledge is a wonderful thing..It’s better to know where you’ve got to go to when. Living in the dark is not my cup of tea. I like to be right open about it.
However, the researcher asked the resident to continue explaining how he understood this. He replied: B3r: … I had Parkinson’s disease in a mild form. I sort of half refused to accept it to a degree. But what’s transpired since, I’ve got to accept it and I will accept the medical profession's decision above my own, because they're more learned than I am. AT: So… you accept the medical profession's advice, above your own. I sense … B3r: Well no one likes to hear something detrimental to your thinking. And you've got to study it very, very carefully… AT: Ok, so you would be seeking open disclosure… … But I sense that you would not accept. However, anyone in the medical profession who …might want to ‘protect you’, your words. B3r: Yes I do after much thought. AT: You do? B3r: I do reject it, after much thought.
The resident emphasises the respect he has for the ‘medical profession‘s’ decision ‘above (his) own’. However, he reflected in his journal and earlier in the interview that openness is preferable and more important than non-disclosure. Whilst the ‘medical profession’ is held in high esteem, the resident rejects paternalism premised on benevolent protection. In a follow-up interview, a resident expressed the view that the decision making ‘authority’ rests with the doctor. The researcher asked for a response to the group’s view that staff should be ‘honest, get it out in the open’. She said: A1r: The staff are not in a position to give a verdict. Only doctors..They (care providers) can suggest things.. So I don’t think the staff, they might suggest..they haven’t got the authority to, the haven’t got the diplomas…
The resident perceives the doctor as decision maker. Other nursing ‘staff’ are able to ‘suggest things’ but the ‘authority’ rests with the doctor. Doctor knowledge is superior to nursing knowledge – the latter is indirect and passive. With this perception, the ‘staff’, other than the doctor, are not to decide about being ‘honest’ and open nor ‘in a position’ to be knowledgeable enough to be ‘honest’ or open. In the context of information sharing, a resident recalled an experience surrounding a death of another resident. The resident was aware that the event had occurred but had been unable to ‘talk to anyone else…about the situation’.
B2r: … and I haven’t heard anything about it, you know. I have been told after a few days that the person … has died or something like that. Any attempt to talk to anyone else that I know of about the situation. So you really don’t know what the situation is, why that person died ?
The researcher asked the group ‘So who do you ask? Who do you talk to? If you want that kind of information?’: B1r: Well apart from seeing you and RN’s or the doctor, I always approach the doctor I think. But then not all doctors believe in that the patient should be told, so you are between the devil and the deep blue sea, aren’t you really? So it’s best not to attack it, really. B2r: Hmm. Hmm (Yes) AT: Tell me about your experience… that some doctors think that you shouldn’t be told? B1r: Well I have only heard it by hearsay. I have never come across it…
Whilst this same resident expressed the view that she ‘tell(s) the doctor what he should do’ about her care, she acknowledged a limitation to her independence. In some situations doctors are perceived to be reticent about open disclosure. This reticence is understood to be formidable. Whilst the resident denies any immediate or personal encounters, she understands herself to be ‘between the devil and the deep blue sea’ and, overall, ‘its best not to attack it’. The resident is not prepared to challenge the authority of the ‘medical profession’. This reticence regarding disclosure was described in a nurse’s (nurse manager’s) personal journal and later at interview. Whilst describing ‘an older style practitioner’ the nurse recalled an experience about the non-disclosure of test results because the doctor fore-saw no further treatment options: BAN: (ii): …Doctor (did) a blood test, because he’s ordered it is upto him to give the information to the resident and I feel that (his) avoidance is not truthtelling…The doctor knew that the prostate cancer was also high and he was avoiding the subject..(H)e avoided giving that information,.. to both the resident and the wife…The wife was very anxious because she was aware of the deterioration and was left to deal with..anxiety, deterioration and no action…
A resident at another aged care facility agreed, perceiving that the doctor controls her care circumstance: A1r: …he (doctor) tells me a great sob story about not being able to come and look after me. So I give in and take his antibiotics... Its me that’s gotta suffer through the dammn antibiotics. I don’t believe in them. AT: You are now saying you’d rather not be taking antibiotics. You’ve said this to the doctor but the doctor has… A1r: Over ruled me..I’ve given in and taken the antibiotics. But its me who has had to suffer through ..antibiotics are no good for me.. ..I had the flu, oh well I had a cold..He said “If you get the flu I can’t come up and look after you”. I said “OK – give me the antibiotics then..I have to have someone”.
The resident’s vulnerability is revealed. She submits to the doctor’s treatment requirements against her will. Experience has shown that the treatment has an adverse effect on the resident, but failure to compromise in her view means that the doctor will not attend to her care. As with her fellow resident (B1r), who perceives ‘it’s best not to attack’ the authority - the resident (A1r) is not prepared to challenge the authority of the ‘medical profession’, (B3r) if the consequence is the loss of her doctor’s care. Her sense of vulnerability and the limits to her independence were more fully expressed when she said: A1r: Well a doctor, as far as I can work out..let’s face it, when I go to a doctor, I do exactly what he says, if its not antibiotics. But now I’ve come to the point where I’ve got an alternative-the book-so I query what a doctor tells me. Mind you there is only one doctor I can query..that I’m comfortable querying and.. AT: Is that some one looking after you here? A1r: Yes. He’s very nice but he’s very young…
Her care circumstance does not frequently promote a shared involvement between the resident and the doctor. The resident’s experience means she usually conforms to what she is told to do in most cases. Questioning her care, having some degree of autonomy, is limited. The C resident group, in their discussion about ‘quiet conversations’ concurred with the view that the residents are outside the information sharing process between the family and the doctor: C4r: Well the majority of doctors when they come to see a patient or that they don’t to a patient, they get the family outside and tell them. Which happens all the time. C3r: That’s right. C4r: You’re the patient. You are the one. It is your body. You are the one that should be told what’s going to happen to your body. C5r: Of course.
The resident confirms her colleague’s perception. Elsewhere, C3r describes the ‘quiet conversation’, saying, ‘…after you have seen the doctor, they gather around in a group and..you can hear them….’. Above, the resident emphasises that ‘…the majority of doctors don’t to a patient…’ – conversations are held between the doctor and family whilst the resident senses, observes and hears lowered voices in the corridor outside their room. Information is not openly shared with the resident. However, this resident’s perception needs to be considered against the view that ‘the old days of doctor’s hiding anything – they’ve gone’: ANL: (ii): …You see, those days are gone, where doctors does all that (don’t tell). These days doctors, a lot of them, still sit down and talk to Mary…No, they sit down and tell them themselves. The old days of doctors hiding anything – they’ve gone.
Within the B(r) group, a resident challenged the view that the resident ‘accept the doctor’s advice above all’, or was bound to ‘give in’ to the doctor’s treatment request, and challenged being vulnerable to a point described as being ‘between the devil and the deep blue sea’ saying: B2r: I think, I still believe, you can put something into a situation yourself over and above what the doctor is telling you… I think that if you just sit down and accept that, then you are letting yourself down to some extent. If you feel that you have got some effort you can make to change the situation I think you should be encouraged to see through and try to do things for yourself and I don’t think that we should take truthfulness from the doctors as anything that lets you off the hook..(S)ome people will say ‘Look I know it is risky for me living alone and I appreciate that you want me to go into a nursing home’… or, ‘I don’t want to go into a nursing home’… or, ‘I don't to go there yet’. I think you have the right to live the way you want to, it’s your risk that you are taking.
The resident being told a diagnosis and prognosis by the doctor means not to accept and resign herself to a situation that inhibits her self determination. The resident challenges the acceptance that another ‘knows best’ by describing ‘truthfulness from doctors’ as ‘advice’. Ultimately, residents’ response to the advice varies. Her understanding is that, presented with a diagnosis and the consequent limitations, ultimately it is the resident who decides how to control her/his life. The resident determines the course of action even if this course of action contains risk. Her view of ‘truthfulness’ allows for the resident to act autonomously in contrast to a view of ‘truthfulness’ that brings with it an expectation of ‘other’ imposed adherence to the advice. 6.4.5
Role of the resident: Residents’ perceptions
Throughout the data and discussion about care provider perceptions the resident emerges as a passive participant in residency. The residents’ data offered an insight into how they perceive themselves whilst in aged care. 6.4.5.1 Autonomous agent In contrast, resident data depicted those in this study as striving for and desiring some level of autonomy. A resident in A expressed her attempt at independence. She revealed: A2r: … Since you were here last time, they tried to send me to the --- hospital or the ---, and I said, ‘I refuse to go’. I said, ‘I’ve got my rights, and I’m going to the --- where I’ve always been…’ …I said: ‘I don’t care what it takes or how long it takes to book in, I won’t go anywhere else’.
The resident recalls her experience whereby she takes control of her care circumstance. The resident speaks of her ‘right’ to a continuity of care and also demonstrates a desire to determine for herself her care options. She knows what is in her best interests and what is not. In her view, what is best is for her to be treated at a hospital that knows her case rather than to be treated elsewhere and risk unnecessary treatments. Similarly, a resident located elsewhere noted in his Personal Journal, after reflecting on the Nurse’s Story: Poor Old Gillie: B3: DE: There are two schools of thought v.i.z 1 should the patient be told of his true condition 2 should he not be told. 1 I personally would like to be told. I guess it would be a big kick in the pants to one’s self, but I would like to know so I could eventually learn to adapt to my required life style in future days. 2 They say ignorance is bliss but to hide the truth is somewhat criminal as he must learn to accept the required state of life style.
The resident understands that disclosure (telling a ‘patient’ about ‘his true condition’) can be difficult for the patient to accept. In the group interview he spoke about ‘not accept(ing) it straight away…’ and ‘…automatically reject(ing) it..’ but ‘…eventually learn(ing) to adapt..’. In the face of disclosure of information about a resident’s ‘true condition’ he continued: B3r:..(Y)ou decide it is far better to accept it, the condition, you already have and to get some treatment for it and therefore I have… You accept the conditions as they are and you must accept it…I repeat, accept it and get on with your life. Otherwise you go and stagnate and live in the dark.
The resident recognises that being told about one’s condition takes time to accept and whilst the news may be a (painful or hurtful) ‘kick in the pants’, this does not defeat openness. Rather, over time, knowing about the condition allows the resident to accept the circumstances, seek treatment and advance his life. Being informed allows the resident to determine his life’s course. In the absence of knowing about his ‘true condition’ the resident’s capacity for determining his own life path is seriously thwarted. 6.4.5.2 Being good However, amidst data that depicted the self-determining and pro-active resident, existed the voice of another who recognised her role as necessarily being a good resident. The researcher asked a resident in a follow up interview to comment on a resident’s view that ‘(I) don’t want to be additional work’: A1r: Oh well, something that goes on, you know the less you, demanding you are, the less you ask them to do, the less….They say, “She’s all right .She can do it”..You don’t get your fair share of nursing..I think that’s what it
was…I know I’ve been accused of taking up too much of the nurses’ time..and its been told to a nurse and the nurse has told to me…
The resident’s experience accords with the view that the good resident is that patient who consistently receives the most positive evaluation from nurses, as one who presents no problems of disruption or legitimation. The resident accused of ‘taking up too much of the nurses’ time’ is troublesome and responds by defending her position as less demanding than most. The good resident rarely interferes with the ward’s social order. Similarly, this resident understands her ability to exercise autonomy is delimited by her perceptions about the doctor’s control and the care circumstance around her. The resident stated she: A1r:… speak(s) up for a lot of the people, at the table…me being what I am I offer an opinion…
Whilst she confided: A1r: …I’ve already made my mind up if anything is wrong with me. I tell the doctor what’s wrong with me and I tell the doctor what he should do. He doesn’t like it but he goes along as far as he can, and then he tells me a great sob story about not being able to come and look after me. So I give in…,
And the resident added: A1r: …if I want to know something I’m not backward in asking. I do ask them. But since being here, you’re only as good as your environment. And when you see a lot of patients worse off than myself, I think there but for the grace of God go I. We’re only a step away..
Therefore, whilst the resident values being able to determine for herself her own care, she behaves so as to comply, restricted by the doctor’s influence and her perception of others in greater need. In an environment of ‘patients worse off’, the good resident becomes silenced. Within a group discussion, a resident cited the doctor as the primary informant. However, she added that whilst outside her personal experience, she believed that ‘not all doctors’ were of the belief that ‘the patient’ be informed (B1r). Significant in this discussion was her sense of compromise and reluctance to confront this non-disclosure. Her view was that accepting this reality (ie behaving, being of no trouble) was preferable to the consequences of confrontation (ie challenging and disrupting). She said: B1r:…So you are between the devil and the deep blue sea…so it’s best not to attack it, really
The good resident is one that presents no problems or disruptions, says very little or stays quiet. Additionally, the good resident looks after herself. The doctor’s busy work and family life lead a resident to say about seeking information: A1r: … So I go outside nurses or doctor within the nursing home, to family or my natural therapy book. I had a sore foot, put a bit of cream on it and got on with it.
6.4.5.3 As a parent In the role of parent, a resident aims to protect in the best interests of her daughter: AT: …(D1r) thinks that in some situations it is very hard to tell somebody certain things… D3r: It is. Sometimes I fall down in the bed and my daughter comes and says "How are you?," and I say "All right," and I make out that I'm good and that…I don’t want to worry ‘er because she has enough trouble. AT: So, you put on a ‘happy face’ because you don't want to worry her? D3r: Yes, because she's just had an operation.. So I say "I'm all right"…
The resident interacts with the family member with a ‘white lie’ told for the purpose of protecting another. In this case, the resident seeks to avoid burdening her convalescing daughter with the perceived ‘worry’ that knowing about her mother’s ‘fall’ might bring. Residents at another residential aged care facility argue against the families demand for non-disclosure: C4r: (Family) will say if something happens: “Don’t tell Mum”. AT: Right. C4r: They are trying to save me, but I should be told just the same. I keep it. … C4r: Yes, that’s your family, all families do it, mostly, don’t they? C3r: Don’t they, yes.
However, paradoxically they concur with their resident colleague D3r, as they reveal a division between public utterances and private practice that accords with the care providers: C3r: But we did it too didn’t we? C4r: Eh? C3r: We did it to, to our families. C4r: Well, to save your children, you do a lot of things. C3r: I remember saying, “Don’t tell my Mother” some things. AT: Yes… as (C3r) has just said, you know, “but we’ve done it”… C4r: Do you (to researcher) tell your children the truth?
The residents reveal a tension – a paradox in the circle of silence that emerges from protection. The residents are aware of ‘most’ families’ ‘quiet conversations’ and the family’s decision ‘Don’t tell Mum’. Aware, they contend that the family ‘shouldn’t’. However:
C4r: Yes, we tried to save our children didn’t we? C4r: Don’t tell this one or that one because your Mother is sick. It’s something you have got to do. You can’t always tell the truth. Because you are saving the person that you love from being hurt.
Therefore, whilst they indicate a preference for openness with their respective families, they acknowledge that they also have not disclosed to their family members in order to ‘save’ their children. Thus, just as families are perceived by residents to protect the resident from truth-telling, the residents acknowledge the necessity for truth to be trumped by ‘love’. A resident added: AT: The two things for me: the group said they expect the staff to be open and honest and get it out in the open. The group also said one has to be mindful of how.... A1r: ..They (another) can cope with the truth.. AT: That’s right, and so, therefore, I’m wondering how you balance both of those two ideas? A1r: Hmm, I don’t think there is any answer…
Acknowledgment of this tension between a resident’s personal preference for honesty as compared with a resident’s consideration of another’s capacity to cope emerged in a follow up interview with A1r as being beyond a solution. 6.5
Discussion: Role
6.5.1
Role of the personal carer
Personal carers perceive their role as happy comforters who are self sacrificing toward their residents and the institution. These role characteristics result in their ‘stretching the truth’ or acting to edit the truth to maintain resident happiness and comfort. Metaphorically, what is disclosed as truth can be conceived of as ‘Diet Coke’ truth– close to the ‘real thing’ and emphasising the sweetness. An alternative conceptualisation is this: small ‘t’ truth-telling is premised on the personal carers’ assessment that the resident will be harmed by ‘bad news’. Since personal carers’ role perception is to promote a ‘pleasant’ and ‘comfortable’ life, any disclosure that puts this at risk, in the personal carers’ view, ought to remain silent. Good personal carers recognise the telling of the truth as wholly instrumental. The truth (and any non-truth) is evaluated and operationalised for goodness’ sake. Good personal carers subjugate their ‘self’ for the sake of their professional role so that good personal carers adhere to their role perception by doing what they are told. By
both subjugation and adherence to role, truthful disclosure may necessarily be forfeited or tempered. A clear institutional division of labour exists between personal carer and the nurse. The division of labour that defines the role of the personal carer as hands on and the nurse as information gatekeeper results in an institutional division of disclosure. Noteworthy in the division of disclosure data set, at least one nurse in formulating a judgement about ‘who could cope with the truth’ (in this case a resident), depends on the opinion of the personal carers who ‘…know them (resident) that tiny little bit extra…’. Elsewhere, the role perception that divides labour and disclosure between nurses and personal carers suggests that personal carers’ self esteem and sense of worth is threatened. Personal carers at two locations (E and B) expressed feelings of low morale and worthlessness. Language such as ‘we know nothing…we’re just shit’ (E5) and ‘..they (nurses) are always putting us down…make us feel incompetent..’ (B5) expressed feelings of frustration about their role, defined as ‘just hands-on’. Personal carers consider that they are ‘not taken seriously, not listened to…’(B4) even though they consider their role with residents is beyond the hands-on care, extending into ‘the daily needs…,(the) emotional involvement and personal involvement with resident and resident’s family’. Personal carers admit they are not given a lot of information, no ‘medical’ information, but are told enough to do their job. Their job, the ‘general picture’ is the physical care, hands-on work. Personal carers understand they are directed not to say much about the resident’s condition (neither assessing, diagnosing or actioning interventions) but can speak about daily care tasks (‘Mum needs a whole lot of new singlets’). Beyond this, the personal carer usually refers the resident and/or the family to the nurse (team leader). A critical appraisal of this division of labour must conclude that personal carers risk operating in a theory-practice gap and by virtue of the labour-information dichotomy, cannot ever completely understand the purpose or implications of their care tasks. A cynical retort may suggest that the work that is the ‘hands on’ care of the personal carer requires little comprehension. In reply, a more sincere view would highlight that the care of the aged resident within a ‘Home away from Home’ (whatever that means) would not routinely be given over to ‘monkeys’.
When nurse to resident ratios means that a small number of nurses exist for a large number of residents, and therefore also the residents’ family (see also Chapter 7: Residency), the division of labour and consequent division of disclosure has implications for what is told and what is not told and by whom. Where the nurses, as the care providers responsible for sharing information, are few in number, the quality and quantity of information diminishes. In a residency of depleted staff and time, edited truth-telling risks becoming a time management strategy and slipping toward silence. Additionally, over time, as the resident and/or resident’s family seek information in a staffed environment of few care providers available for discussion, the resident or family risk slipping toward resigned silence. Data reveal that residents may, and family do, turn to the personal carers to become informed and seek opinion. As the hands-on carer, the personal carer is with the resident daily and readily accessible to the resident’s family. Consequently, the personal carer’s role description limit is challenged and the carer is asked to go beyond that defined role and become informant. Given the gate-keeping of information by the nurse, the personal carer in this challenging situation may not be able to share informed information. Pressured by such circumstances (to keep the customer happy), the personal carer risks misinformation. Institutional processes that create a communicative environment in which disclosing information is rigidly divided, lend themselves to being bound by suspicious awareness. Additionally, personal carers can and do engage in phatic communication or employ other strategies that foster mutual pretence. A solution to these consequences – brought about by the division of labour and subsequent division of disclosure – rests in staffing numbers and types. Increasing registered nurse numbers in aged care requires society and nurses (as pro-active members of society) to demand that governments meet funding requirements. The profile of aged care nursing needs to shift so that the aged care sector attracts qualified registered nurses. Perceptions about low staffing do little to convince professionals that aged care is an attractive, viable domain for practice. The afore cited nurse’s (team leader’s) information dependence on personal carers is in contrast to personal carers who understand the nurses’ perception of them as ‘we know nothing…we’re just shit’ and ‘..(nurses) are always putting us
down…make us feel incompetent..’ A research-methods issue explains the disparity and illuminates where the power resides in residency. The A group was not homogenous. It comprised both personal carers and a nurse (team leader). This meant that the group ideas were generated within the very ‘pecking order’ referred to by the nurse. Based on the researcher’s observations, the personal carers and the nurse were cautious about what they said to the researcher and how they interacted within the group. The substantive issue is not that the interpreted incongruence, personal carer’s doubt and communicative interplay (verbal versus non-verbal) may bring into question the group’s data trustworthiness, but rather that these add to the expression of a ‘pecking order’ and the sense of who has authority and who is answerable. An institutional hierarchy places the nurse’s authority and decision making power above those of the personal carers. Within the hierarchy resides an ‘ethic’ determined by the aged care professional’s culture and policy. This group dynamic supports the contention throughout this study that residency is a tightly controlled environment and the nurse is in control. Whilst control and the division of labour and disclosure do exist, circumstances arise when personal carers do disclose. They may recognize that the institution expects them not to do so, but the care circumstance is perceived to warrant a response. Personal carers breach a communicative role limit because of a shared relationship with the resident and/or family. However, the nature of this relationship and the role breach is not universal. So, for example, in a D group, the nature of the relationship might be such that a personal carers’ role evaluation is such that they believe the family is responsible for bearing the news of a family death. If the family ask ‘Don’t Tell Mum’, the personal carers accede. Consequently, the personal carer in this study, lied. Acceding to the family’s request ‘Don’t Tell Mum’, and the allocation of death disclosure as a family right has several implications. Residents know that the family use the rule ‘Don’t Tell Mum’ and engage in ‘quiet conversations’. Therefore, it follows, that residents risk either never being told and not knowing about ‘it’ (death) or living in a state of suspicious awareness. The personal carer’s role understanding that warrants a lie in response to the family’s request to ‘Don’t Tell Mum’ contravenes any requirement for or statement about the resident as the primary responsibility.
In contrast to the above case, in a C group, the division of disclosure is breached when confronted by a resident’s relative about a resident’s death. That is, a willingness to breach the communicative role limit with open communication is limited to a ‘special’ few. In some instances, the personal carer needs to be better prepared for talking – in particular about death and dying. (Further analysis of death disclosure is made in Chapter 7: Residency). Furthermore, a consequence of the division of disclosure (as perceived by the personal carers) is a role tension or frustration. When family, nurse or doctor invoke ‘Don’t Tell Mum’ the personal carers’ practical experience is that the non-disclosure has an effect on the resident’s behaviour. The personal carer, as the hands-on worker, is left to deal with the emotional-behavioural response. Somebody else is making a decision that has a negative bearing on them. Personal carers are ‘frustrated’. Furthermore, and to be discussed later within Residency, when a nurse chooses ‘half truths’ and ‘doesn’t tell it like it is’ to the resident’s family, the effect on the personal carer (who has experienced the resident’s behaviour) is left feeling ‘like shit’ (E5). By contrast, personal carers maintain the ‘vision splendid’ by not necessarily revealing behaviours expressed by residents because they are deemed by the personal carer to be upsetting to the family. In the context of telling or not telling, the personal carer in this study determines that ‘it’s okay when I rationalise for resident’s or family’s own good that I don’t tell – it is not okay when another rationalises the same when this has an impact on me or usurps my authority’. Restricted by their role, the personal carer(s) of necessity manages the division of disclosure by engaging in a communicative ‘game’, obfuscation, the use of nonverbal and ‘buck-passing’.’ In the ‘game’ the relative is recognised as having suspicious awareness (the personal carer recognises that the relative is being given the ‘run around’). As a consequence of this communicative ‘chess’, the personal carer expresses feelings of role helplessness – a role difficulty or tension (‘difficult’, ‘awkward’) which manifests itself as avoidance behaviour and a contemplation of lying. Sufficient data exist to support the previous claim that the personal carers will, however, breach ‘the line’. Increasingly, the pattern of openness between personal carer-resident or personal carer-family in the context of role mirrors that described by the registered nurses set against doctors in the researcher’s preliminary study (see
Chapter 1). Collectively, the personal carers in the group expressed the view that over time they establish a certain trust with the family and resident. Therefore, they do disclose, even though ‘we are not supposed to…’. The personal carer discloses ‘without disclosing too much’ (E3). In a typical case, the personal carer disclosed enough to bring about change that contributed to the resident’s best interests, but she did not ‘disclose too much’. Whilst the personal carer brought about the change, she understood that it was not her role to operate in ‘this way’ to initiate the care. The personal carer’s disclosure meant the consequent intervention had been achieved ‘in a round about way’. The personal carer is in a position in which she must balance the institution’s role requirement against the best interests of the resident. Her response – not ‘disclosing too much’, maintains the balance of authority whilst serving the needs of the resident. Role, working relationship and resident’s integrity are brought into harmony by covert communicative means. The communicative and therefore truth-telling practices are far from universal. In some relationships, personal carers are prepared to disclose information to another, even though the institutional requirement is that they refer residents and relatives to the nurse. Whilst covert communicative practices serve the resident’s best interests, some telling (disclosure) practices serve the interests of the personal carer. A personal carer indicates that when asked over the telephone for information that she knows, her role responsibility means she refers the caller on to the nurse without disclosing to the caller. Such action evidences a rule understanding consistent with the division of disclosure. In contrast the same carer evidences obfuscating rather than her saying ‘I would refer them to an RN’ nor does she state ‘I would take up the issue with the family’ nor ‘Advise the RN to speak with the family’. Furthermore, whilst acknowledging elsewhere in the study, that residents are able to sense that something is amiss and the resident is capable of a mature response, obfuscation defies this. The personal carer avoids an engagement of potentially high emotion. The obfuscation ‘lets (the personal carer) off the hook’ (C3). 6.5.2
Role of the nurse
The nurses’ role play of being happy, giving and positive people, results in the linguistic practice of phatic communication and the subjugation of the ‘true’ self to ‘role’ self. The role expectation as a self-sacrificing nurse may lead to the
suppression of one’s true self. What the context demands is an always positive, institutionally committed, tireless worker. Consequently, for example, a nurse (CPJ) is not truthful, forfeiting expressing her feelings honestly in an interaction that demands she respond as a professional. The goal of nurses interactions with the resident’s family (and resident) is to prevent worry, and anxiety and ensure that family life is devoid of interruption and full of contentment. Portraying themselves as happy, giving and positive people results in an overt concern with protecting others from the harm caused by truthful information.’ Beneficence and non-maleficence are guiding care principles. The role dictates that ‘above all do good, do no harm’ and avoid and do not promote hurt. The nurse’s responsibility is the determination of what is and what is not of concern about the resident’s health status and therefore what is and what is not to be disclosed to the family. The professional nurse’s determination of what is of concern, and therefore disclosed to the family, is any noticeable alteration to the resident’s health status. What can be said of this nurses predisposition to not bother the family unless they determine it to be really necessary? Nurses judge that the family will be ‘worried’, additionally worried and ‘bothered’ with the knowledge of bad news. However, this view, that disclosure of bad news causes harm, is insufficiently supported in the literature or by the residents. A presumption exists that family would be ‘bothered’ rather than grateful for being informed. The consistent argument proposed by the researcher is that a respectful response would be to ask the family what it is they expect to be told and under what circumstances. This disclosure or ‘telling audit’ ought to be part of the initial admission procedure and to be reviewed in collaboration with the resident and the resident’s family over time routinely, but also as the resident’s condition changes. A ‘telling audit’ acts in the same way as an advanced healthcare directive - the difference being that advanced direction is given about telling rather than care interventions. Nurses making assessments about low- or no risk alterations to the resident’s condition and choosing not to tell the resident’s family, would need to be certain that they are (a) capable of making this judgement about another’s wishes and desires in the care provider – other relationship, (b) meeting the legal requirements for disclosure about a resident’s condition. After all, by the nurses’ own reasoning in this study, non-disclosure ensures the family will neither be ‘bothered’’, concerned or able to do anything about it. Clearly, what the resident’s family does not know will not hurt
nor will it risk litigation. Rather than an institutional emphasis that favours the nurse being in control of information the researcher argues that the nurse ought to determine what a family’s preferences are for telling. It is clear in the data that the nurse manager and the nurses work within a recognised domain of disclosure specifically requiring their management. Consequently, they operate as information gate-keepers. Information gatekeepers control the disclosure of information and as a consequence control the personal carers (and residents and resident’s family). The perception exists that control and containment is required to prevent information ‘escaping’. The nurse as ‘fact controller’ points to a congruence with the researcher’s prior study. That is, in aged residential care, the nurse (manager, team leader) manages information as does the doctor in acute care (although some nurses do acknowledge the role of doctors in non-disclosure decisions: see BCT, ANL and DJJ). In aged residential care, the personal carer is to information management as is the registered nurse in acute care. Both personal carers in aged residential care and registered nurses in acute care recognise a role restriction on sharing information but breach the communicative ‘line’. The nurses’ insight that personal carers ‘…talk outside resident’s room…’ and ‘…to relatives…’ needs to be seen in the light of the fact that residents speak about ‘quiet conversations’ (C3r; C4r) that they sense and see their family having after a doctor’s visit. Hence, it would follow that residents risk becoming informed or aware either indirectly or incorrectly resulting in suspicious awareness or mutual pretence. This evidence and reasoning argues well for the nurse as an information gate-keeper. However, it is not evident that nurses necessarily openly and freely share information. Rather, telling or not telling is conditional on and not always in the resident’s best interest. The control and the containment of information can be further developed. A concern by the nurse who is ‘not quite sure what the personal carer is going to do with the information’ suggests the personal carer is not trusted by the nurse. The personal carer might reveal to the resident or resident’s family what the nurse does not want revealed. Finally, the personal carers’ incapacity to comprehend warrants limited sharing of information to prevent resident confusion. After all, the ‘true picture’ (CAH) belongs to the nurse. In this study, a nurse manager and the nurses
rationalise their gate-keeping function on the grounds that personal carers are incapable of adequate comprehension and cannot be trusted. The nurse (team leader) and nurse manager as fact controller is, in part, a product of perceptions amongst some about staff mistrust and staff aptitude. Furthermore, nurses understand that the resident’s family cannot cope with nor understand their world of work. Equally then, the nurses employ an information gate-keeping function where the resident’s family is concerned In contrast, a nurse manager understood that amongst personal carers there exists degrees of competence, so that in ‘some’ instances, the personal carer may act ‘as a registered nurse’. Therefore, the personal carer enters the domain of disclosure. Consequently, in ‘some’ cases the personal carer becomes ‘part of the team’ such that the carer has a ‘right’ to the resident’s care plan. Therefore, the personal carer comes to understand what the registered nurse understands. In this case this means that the information gate-keeping function is transferred but lines of division remain. Nurses alone claim to know the burden of care. However, the aim ought to be to reveal rather than conceal, as a tonic which will ease guilt and render denial impotent. Additionally, the control and containment of information through editing the truth or filtering information is rationalised on the grounds that the resident’s family’s happiness is best served this way. What is said to the family is cleaned and sanitised, free from the foul detail. This, in the nurses’ view, rightfully upholds the positive image of the resident and ensures the resident is never seen by the family in a poor light. Whilst both nurses’ and personal carers’ intentions are to protect the family from the descriptive truth, the consequence is that this protection maintains a false ‘vision splendid’. Therefore, it is understandable that the family are perceived to be self-deceiving. The nurse manager and the nurses are responsible for the stowage, protection and discharge of the potentially hazardous information. Leakage of the hazardous goods risks polluting the bedside with disorderliness. Relying on metaphor, an orderly ship is one overseen by the Captain and her officers and manned by good sailors who obey the rules. Personal carers’ articulation of ‘Diet Coke’ truth and nurses’ truthtelling in practice point toward sameness rather than difference. Both the nurse and the personal carer understand truth-telling in practice and ‘Diet Coke’ truth as set in and over time and both ‘gauge the moment’ for telling.
However, the point needs to be made that palpably absent in the data is a convincing emphasis on what is told or not told by the nurse to the resident. Disclosure in this study is the domain of the registered nurse who decides what information is shared or not shared with the personal carer and the family. However, in the context of telling – that is, sharing information with the resident, the nurses’ data is very silent. 6.5.3
Role of the care provider: Residents’ perceptions
The resident recognises the institutional divisional of labour in which the carers are the doers, the hands-on client worker responsible for the daily care tasks (such as showering). The nurse has well defined tasks, though these do not extend to including the basic cares ascribed to the carer. Carers and nurses are perceived by the resident as ‘doing a job’. In this task orientation toward caring, the residents understand the implications for information sharing and communication. The nurse is acknowledged as the information co-ordinator and controller. The personal carer acts as an informant to the nurse, relaying information about the resident’s care circumstance as it arises. Residents recognise that either they wait to speak personally with the nurse or ask that the carer relay information to the nurse about their health status. The carers’ role understood in this way concurs with the role definition as described by the carer and the nurse. This communicative role limit places the carer outside the possibility of coming to know the resident’s history fully. This ahistorical knowledge of a resident is created as a product of the institution’s labour demarcation. Consequently, it is not surprising that the resident perceives that the carer has no sense of the resident’s history. Furthermore, the division of labour favours the carer’s claim for a closer knowledge about the care (activities of daily living) than that of the nurse. Nurses gauge what to tell or what not to disclose on the basis of protection. In the resident’s view, so do the ‘cheerful’ carers. Additionally, the role limit, or what was described as the institutional ‘program’, that assigns the carer to the role of informant to the nurse, complements the resident's experience that carers only talk about their own family life and avoid issues that may be upsetting. Other than social chit-chat, the presence of the communication limitation puts at risk the desire for deeper engagement in the relationship
The hurried carer with a task orientation, ‘emphasises getting things done and finished’. Additionally, the resident experiences residency in which social chit chat occurs during bed making – thus limiting the personal orientation in the communication. Consequently, opportunities for therapeutic communication are missed or fail to emerge, which brings into question the carer’s capacity to fully know the resident’s ‘fears’ and ‘needs’ and ‘wants’. The care providers place great stock on knowing-the-resident as fundamental to the care providers’ comprehension of truth-telling. When this understanding can be questioned, so too the care providers’ practice with truth-telling. A criticism of a practice with truth-telling was voiced by a resident who reflected on a nurse’s interaction with a patient with Alzheimer’s disease. In the resident’s assessment, professionalism and relationship maintenance are advanced not through non-disclosure to the demented patient but rather through honesty. That is, by disclosing the truth, whilst being sensitive to the way it is said. The ‘truthful relationship’ is characterised by the carer engaging with the client’s ‘total picture’ – that is, past history and circumstance (husband’s death) and current situation (distress, tearful, anxious). This resident’s view of the ‘truthful relationship’ with a person with Alzheimer’s disease does resonate with the emerging view in the literature that there is some evidence that reality orientation has benefits on both cognition and behaviour in people with Alzheimer’s disease. 6.5.4
Role of the resident’s family
In practice, the resident’s family ask ‘Don’t Tell Mum’. In agreement with the researcher’s preliminary study, families of residents (patients) do ask nurses and personal carers ‘not to tell’. The role of the family as a fact controller has consequences for the residency and causes role tensions for the care provider. Research data reveal that situations exist wherein the family not only asks that care providers not disclose information to the resident but also that the care providers on occasion perceive this as the family’s role. That is, family should disclose bad news and care providers remain silent or deny knowledge of it. As established within the analysis of roles of the nurse and personal carer, the care circumstance emerges as a place for information control and containment. Whilst generally the care provider recognises the resident as the care priority, the care
provider exhibits a split responsibility to the resident’s family. Maintaining control of the care circumstance generally and the management of information overshadows the resident’s preferences and favours the involved, the dominant, potentially disrupting and powerful – namely, the resident’s family. Furthermore, care provider’s personal accounts about experiencing the withholding of information by others stand in contrast to the care provider’s professional actions wherein information is likewise not disclosed. That is, whilst the care provider has experienced and recognises the consequences of non-disclosure - anger, failure to say ‘goodbye’ at death, withdrawal, the experiences do not deter them from similarly judging not to disclose to a resident or resident’s family. In the case describing the request for non-disclosure of a cancer diagnosis to a 72 year old woman, a nurse manager discussed ‘filtering the truth’, defining this as the language of ‘(information) you tend to keep back’. Information is withheld. The nurse manager’s own decision to withhold information is in her view reasonable as it excludes ‘medical’ (diagnostic) data, and whatever is withheld may be disclosed some time in the future at the nurse’s discretion. The researcher proposes that a significant issue within this study is that nurses and personal carers resent the request of another to withhold information but do so with justification as they see fit. The ‘other’s’ actions are negatively reviewed by the care provider when the locus of control resides outside the care provider’s realm. For example, a nurse manager wants control. Telling a relative to ‘Come outside’, away from the bed-ridden resident or ‘filtering the truth’ does not cause any level of worry (see Chapter 7: Residency). However, suggesting ‘Don’t Tell Mum’ as requested by the resident’s family concerns the nurse manager, since it makes demands of, and commands the nurse. This tension is described in the researcher’s preliminary study as ‘coercion by the law’. Residents believe that the resident-family relationship is one in which truth-telling is required. That is, the residents actively seek truth-telling from the family (and doctor). However, they also recognise that truth-telling is not always forthcoming. Whilst residents make their requirements known, families participate in quiet conversations and also decide within the family group not to tell.
The residents understand that the families perceive the truth to be in some manner hurtful. The residents’ families, as with the care providers, make judgements about the residents’ capacity to cope with the hurtful truth. The families operate from their role as protectors, grounded on benevolent paternalism. This role as protector and acting as advocate in the resident’s best interests coincides with the care provider’s as advocate. Families and care providers utilise protection in the guise of therapeutic privilege - but the question remains: ‘Who knows best what is best for the resident?’ The care provider data suggest that the families are least capable of knowing what is in the best interests of the resident, though they themselves clearly make the same type of judgements. The residents’ explicit requests and their understanding is in contrast to both family and care providers’ judgements about resident’s best interests. Whilst care providers and families alike act to protect in the guise of therapeutic privilege so trumping truthtelling per se, residents retain a suspicious awareness. Residents speak against ignorance and in favour of being informed. They also recognise truth-telling can be difficult but the pains caused by non-disclosure are perceived to be of a greater concern to them. 6.5.5
Role of the doctor: Residents’ perceptions
Residents expect and desire truthful information. This expectation is not thwarted by care providers’ judgements about incapacity for coping in the face of a disclosure. The residents perceive the doctor or the nurse (registered nurse) as the source of care information and have a lesser expectation that personal carers are informed or have the authority to ‘truthfully’ disclose. Specifically, the resident perceives the doctor as the primary decision maker. Nursing ‘staff’ are able to ‘suggest things’ but the ‘authority’ rests with the doctor. This implies that doctor knowledge is held in a higher regard than nursing knowledge – the latter being indirect and passive. Additionally, residents seek information from or respond to information they obtain through media and texts. An external source for this knowledge can also include the resident’s family. Nurses recognise that families also bring to the care circumstance knowledge they have sourced from their own experiences and the media. The resident held knowledge risks conflicting with the care provider-doctor knowledge. This tension risks fostering potential claims of untruths and false hopes. In a time starved context in which adequate, open sharing of information is impeded, the
residents seeking information ‘outside nurses or doctor’ may be described as disenfranchised. The residents’ perception of the doctor’s authority was underscored through their language. They spoke about ‘accept(ing) the doctor’s advice above all’, on the one hand but on the other hand agreeing to ‘give in’ to the doctor’s treatment request. They recognised the doctor’s non-disclosure but felt ‘between the devil and the deep blue sea’ about it. In their state of vulnerability, the residents are either unwilling or very cautiously prepared to challenge the authority of the ‘medical profession’. Additionally, as one resident described it, ‘…the majority of doctors don’t (speak) to a patient…’ – conversations are had between the doctor and family whilst the resident senses, observes and hears lowered voices in the corridor outside their room. Information is not openly shared with the resident. Therefore, the residents reveal their care circumstance as one in which their truthtelling expectation is compounded by care providers protection, role understanding, time restrictions and an exclusion from meaningful engagement. Residents reject protection and are aware of their exclusion. They are less forthright in challenging the doctor’s authority. However, a resident challenged the ‘above all’ acceptance that another ‘knows best’ by describing ‘truthfulness from doctors’ to mean advice. Ultimately, the residents’ response to the advice is their own. The resident’s understanding was, that presented with a diagnosis and the consequent limitations, ultimately it should be the resident who decides how to control her/his life. The resident wishes to determine the course of action even if this course of action contains risk. ‘Truthfulness’ allows for the resident to act autonomously in contrast to a view of a ‘truthfulness’ that brings with it an expectation of ‘other’ imposed adherence to the advice.
6.5.6
Role of the resident: Resident’s perceptions
The resident claims to know his or her own best interests. Decisions about treatment options were described as a ‘right’. The resident wants to determine for him/herself
what course of action to take. In the context of disclosure, the resident recognises that knowing about one’s health and treatment allows for acceptance and adaptation. Disclosure allows for the resident to move forward in their life whereas ‘ignorance’ is deemed to hold one’s life course back. A resident accused of ‘taking up too much of the nurses’ time’ is considered troublesome and responds by defending her position as less demanding than most. On the other hand, the role of ‘good’ resident rarely interferes with the ward’s social order. Therefore, the good resident is that patient who consistently receives the most positive evaluation from nurses, as one who presents no problems of disruption or legitimation. The ‘bad’ resident defends her claim for nursing care service – a defence deemed unnecessary if residency aims to promote autonomy, respect and obligation-free services. Furthermore, the ‘good’ resident accepts that his or her personal care circumstances could be worse by comparison with those around him or her and where capable, self cares, keeps quiet and learns to comply with care provider (doctor) pressure. Compliance of this kind, described as ‘giv(ing) in’ because a doctor is perceived to be unable to attend to the resident if he or she holds to her own position is inconsistent with residency that aims to promote independence and personal preference. In the role as parent, the resident acts to protect for benevolent reasons. Residents’ understand that the parental role means that circumstances arise in which, under the guise of ‘love’ that protects and ‘saves’ from hurtful truth, non-disclosure is a reasonable communicative strategy. A resident questioned by the researcher about the anomaly – that on the one hand the resident has a preference for openness whilst on the other openness can be overridden by protection, concluded in response that there is not an obvious method for ‘balancing both… ideas’. The parental role perception and the resident role requirement matches the care providers’ understanding. The resident-family tension parallels with the carer-resident tension. Data support the contention that, in the context of truth-telling, carers and nurses respond to resident and family by omitting (withholding) information for benevolent reasons. However, personal experiences of carers and nurses of omission by other parties (namely, family) are equally considered as being wrong. In the case of both the
resident and the care provider, there appears to be a division between public utterances and private practice. In both the residents’ and carers’ understanding, the role an agent plays influences perceptions and practices surrounding truth-telling.
CHAPTER 7 FINDINGS: RESIDENCY
Figure 7.1: Residency
CHAPTER 7 FINDINGS: RESIDENCY
7.1
Introduction
This chapter is the final of the three (3) findings and associated discussion chapters. Figure 7.1 displays the core themes and the following Table 7.1 the corresponding sub-themes for this, Chapter 7: Residency: Table 7.1: Residency and sub-themes Chapter 7
Core Theme Sub-theme Home away from Home(a)
Daily reality(a)
(a)
Residency Home away from Home Rules of engagement Starved of time Waiting House Place of awareness Truth-telling in practice Treatment truths Dementia truth Death disclosure
Theme with accompanying residents’ data
What the care provider does (role) for or with the resident or resident’s family cannot be clearly separated from the nature of the relationship that emerges within the care context (residency). Therefore, the meaning and understanding of truth-telling in aged care is not possible in the absence of an appreciation of how the care providers give meaning to and come to understand the care circumstance – residency, the aged care facility, the nursing home. This relationship-role-residency trinity is evidenced in the following personal journal entry (E2) that acts as the template for the analysis of residency as the ‘Home away from Home’. Care providers’ perceptions and understanding of residency determine what care providers will or will not tell and also contextualise truth-telling in its connection with relationship-role. That is, the perceptions both carers and nurses have about the aged care facility – how they describe residency as ‘Home away from Home’ (and what this means), as a place of little time and a plethora of situations and sometimes multiple truths, have implications for truth-telling in practice.
7.2
Residency: Home away from Home
The understanding that the aged care facility is ‘home’ is portrayed in a personal carer’s journal in her reflection about ‘harmless lies’: C1: DE: “When can I go home?”..is asked to staff by so many residents day after day, and most of us.. answer it in a similar way (ie) “But you are at home dear, this is where you live now, here with us. Are you not happy living here with us?”.. We the staff (carers) do feel that it is a lie but be it a harmless lie to some residents and yet, to those residents who know and understand that they are with us to stay, it can be a taken as a major lie.
The ‘many residents’ question the carers over and over about leaving the aged care facility. The personal carer recognises the futility of the questioning and the impossibility of the residents’ hope. ‘Harmless lies’ buffer the resident from the reality – that the resident will not be going home and in turn, also keep a ward orderly and calm. The carer’s Personal Journal entry continued: But the questions go on; (Q) “When is my son/daughter coming to take me home?” (A) We tell them that maybe they will come and take you home on the weekend, (but we do not say to them it is only going to be for the day). Why? Because that way we feel we are not lying to them…
When asked later at a follow-up interview about this particular response the personal carer added: C1: (ii):..I don’t feel that you’re lying to them by saying you can go home because they are – they are able to go but if you tell them they are going home for the one day, they can clam and just not want to go …”Well if you don’t want to leave me at home, then why take me at all.” And I can see their (resident’s) point…
Here as with other care providers, the personal carer utilises mental reservation (see also later in this section nurse DJJ). The personal carer wrote: Why should we feel sad for these people, not knowing at times what to say to them, repeating what we know are, simple white lies that just keep them from being so sad, depressed. I ask: (“What do we say?) Do we keep on and on telling them these lies? Or, do we try to convince them that they are at home (a home where they really do not want to be at.)? After all, our motto is: “Home Away From Home”.
‘Simple white lies’ (benevolent deception) attempt to instil a possibility of departure. The personal carer’s perception of the ‘Home away from Home’ is a place in which the daily desire for residents to return to their own homes requires of the carer ‘white lies’ for benevolent reasons consistent with the personal carer’s role.
Residency as ‘Home away from Home’ was further analysed in a Personal Journal entry. Reflecting on the Nurses’ Story: A couple of shifts in a Nursing Home, a personal carer summarised her perceptions of the residential aged care context. She wrote: E2: DE: Yes! This does happen every day: Is it right? No of course not! Dementia needs to be managed with love & respect – not large doses of medication. We need to be trained to cope with what-ever situation that may arise. Not regimented – not set into a mould of what should happen – should be happening..(S)o if we do happen to have dementia – provision should be made for the resident - not the staff.
The world of work in Residency (at least in the context of dementia care) requires multiple skills and specialist ‘trained’ staff capable of caring beyond merely doing daily tasks premised on repetition and ward orderliness. Aged care in this carer’s view, ought to be resident-centred rather than for meeting the interests of the staff. The carer continued her entry: Then suddenly we are old – a nuisance.. We are no longer “useful’. To some family and care givers we are a nuisance. We should be tucked up in a chair in the lounge or in bed – Not able to communicate that we are cold, wet, hungry, lonely or just need someone to really “care” for us – not just do the motions of “caring”.
Voicing an opinion against labelling or stereotyping the aged resident, the carer perceives that ‘some’ residents’ families and ‘care givers’ consider the elderly as useless and burdensome and best contained and concealed from the mainstream. Here, this particular personal carer also voices a criticism about the institutional emphasis on doing care (‘do the motions’) rather than the being cared for. She further revealed: I may not be able to tell the difference between “day” and “night”. I may wish to stay up late & sleep in late and have breakfast late. Have my shower when-ever I feel like it – not to have my shower at 7am because breakfast “Will be here in 15 minutes” and everyone has “too many” showers to get through before lunch. Carer: “You know I go off duty” at 1pm. Come-on. Don’t be a nuisance – just do what the staff “want”.
The personal carer’s call is for care that addresses the individual needs and wants of the resident. Revealed here is the ideal residency akin to ‘Home away from home’ where residents’ autonomy is given due regard rather than institutional policy and process. Finally, E2 wrote: If only some-one had time to talk to me. I really need to talk about the happy times – my family, home, garden, pets. How lovely it would be to sit in the garden.. all the things the staff don’t have time to do. There are medications to give out, dressings to do, doctors to ring about Mrs C – she just isn’t sleeping at night. Night staff really don’t have time to be making cups of tea or sitting with Mrs T. Everyone is supposed to be asleep. There are only five staff on duty and seventy residents, you know – night staff want to stop for a
break and a cigarette sometime to-night. Everyone should be tucked up in bed – asleep.
Staff are time starved. Tasks become the care priority, rather than the resident. There is, in this personal carer’s view, no time for engagement with the resident, no time to get to know the resident. With a strong task focus (‘so much to do’) and few staff (limited resources) the emphasis is on ward social order. A group of personal carers revealed their insights about the residential aged care facility as they discussed relatives’ reactions to a relative entering a facility: C3:..I think we can see more reality than most people who’ve never seen anything like that before. Never been into a nursing home or, because nursing homes are pretty shocking places for people who have never… C2: Oh yeah, it would be …
Carers consider themselves in touch with the ‘reality’ of the world of the aged care facility. Their experiences embed them in the real world of ‘what goes on’ in care. The families are construed as not as in touch with the carers’ world of work, a place that to the outsider is ‘shocking’. Asked in their individual interviews to clarify this of the ‘nursing home’ as a ‘shocking place’ the carers added: C2: (ii): I mean they’re not shocking places to be in. I don’t mean that, but people (visitors) come in and people (visitors) haven’t seen people (residents) …. that wet themselves, people (residents) that walk around and who are demented and people laying in beds..(A) nurse can come up them (resident) and they (residents) can hit them, or they (resident) can throw their tea all over the floor… I’ve had a friend who’s put her husband into a nursing home and she was shocked – what she was telling me happens here everyday and didn’t phase me at all. C3: (ii): (T)hey (visitors) don’t know what it is like in a nursing home. Their relative comes in..they (visitors) don’t realise what it’s like here..(W)e know that they’re (residents) quite OK and don’t really want anything. But it just doesn’t appear that way for somebody who doesn’t understand.
For these personal carers, the residency is in itself not a ‘shocking’ place per se. Rather, they understand that the care provider takes for granted and accepts (‘see more reality’) what to those uninitiated on the outside cannot comprehend. On the face of it, the personal carer understands uncritically the residency. However, the C group discussion continued with an ambiguity: AT: So what, what do you think they see that concerns them? C3: In his case he sees little old people sitting in awful big chairs in different positions, dribbling, making weird noises… C2: He’s probably scared that is going to happen to yourself...We look at people and we think: “Oh my God, shoot me if I am going to get to this stage and really wilting”….(I)t just seems like you have got no control over what is going to happen. You could be straight like that (using her hands) and be in a
nursing home, I think it’s frightening. It is probably more for us because they don’t know what it is like out there (in the nursing home)….
Whilst personal carers contend with the ‘reality’, the families are confronted by a vision of senility – ‘little old people sitting in awful big chairs in different positions, dribbling, making weird noises…’. However, here the C2 carer expresses a desire not to age in this manner – with a loss of control of one’s life. The residency is originally described as ‘frightening’ by the carer who has insights into the reality that the visitor can never know. The group continued: C1: When people.. come into a place like this to bring their Mum and Dad..and look at other people who are actually worse than their Mum and Dad and they think.. “Where is the quality of life?” You know, “Is this what is going to happen in the near future to us, to Dad or whatever?” And yeah, it’s a hard thing..(W)e all find it hard sometimes to come to work and see people…had their faculties, could talk to you..and then bang! They’re no longer like that, normally like that, ..they are just gone to nothing.
The carer’s perception that residents’ families question “Where is the quality of life”? amidst this vision of senility extends into the understanding and meaning of residency for the carer when she says: ‘You know, is this what is going to happen in the near future to us…’. The carer reflects on the resident who rapidly degenerates, from having ‘faculties’ and able to engage with the environment, to ‘bang!…gone to nothing’. Seeking clearer insight, the researcher sought clarification about this view of the resident’s progression. C1: …Either dementia has taken over, or their condition has just deteriorated rapidly…It’s all gone…. They no longer laugh. They no longer talk to you like they used to. They no longer walk.
At a different aged care facility, a nurse (team leader) agreed: ANL:…this is the residents’ home. This is not hospital. This is their home but it is big… their whole life… you wait ‘til you get old. You live in a little room that’s what becomes your home…A lot of these people have had everything, their jobs, family then all of a sudden they’re just there.
The nurse perceives that the resident’s life, prior to admission, where they ‘have had everything…’ is reduced to a ‘little room’. Essentially, the view is that the resident’s life has ‘..bang!… gone to nothing’ (C1). These less than positive perceptions of residency were further emphasised by a carer at B: B4: I think, I think you’ve got to..think of the people in the ward (nursing home) – they’ve got dementia. They’ve got old age. They’ve got everything against them..
This portrayal of residency does complement the previous personal care’s view, questioning life’s quality whilst a resident in care. Finally, this perception about the resident’s quality of life whilst in care developed more fully in a discussion that set the non-residents ‘out there’ relatives’ ‘choices’ apart from the resident. The personal carer in speaking about considering the resident’s ‘emotional state’ said: A2: (ii): …The relatives are out there, they’re doing what they want in their life, going where they want, still able to do what they want. They still have choices. These residents haven’t got those choices anymore. We are their choices.
In effect, the residency as ‘Home Away from Home’ is a place where residents’ capacity to do what they want and express their own choices (be autonomous) resides in the control (‘choices’) provided by the care providers. 7.2.1
Rules of engagement
In understanding the care providers’ insight into Residency a situational ethic exists as a framework to respond to ‘What ought I to do about telling the truth?: B3: It is. Geriatric nursing is harder than general practice. B2: DE: Often there are no hard and fast rules to guide us and we must rely on our knowledge of the resident and our experiences..I often feel aged care is like this in general.. compassion, consideration and genuine care are the best tools and each person is an individual. DJJ: …(Compared to a) normal nursing arena in acute it was a different thing to come more to a long term care environment where you have got different issues impacted on you, that you have got to work through. It seems to me a little bit more clear cut sometimes in a hospital to what they are here in terms of ethical dilemmas …
Here the carers and elsewhere a nurse manager (DJJ) identify aged care as ‘harder’ than acute nursing and the ethical course of action as being clearer. Decisionmaking in aged care rests on a situational-relational ethic (see also the previous section: Relationship). The position of the situational-relational ethic in residential aged care was highlighted in a nurse’s journal entry: ELQ: DE: Let me start by saying one thing “THEORY” is a wonderful thing – however it rarely allows true expression. I have sat through so many.. subjects which tell you how to react and what to say at a given time and how to get along with one another….each day is a new day. We react differently to each situation daily. There is no right or wrong.
In this context of the ‘geriatric nursing’ described as a-theoretical but dependent upon a situational-relational ethic, the care provider finds B3: DE: …It is often difficult to first be with residents and family – one feels that one has to be seen to be doing a job to justify one’s working existence….
The physiotherapist concurs with personal carers, who perceive themselves and are described by nurses, as ‘doers’ or hands on carers. The care focus in the residential care facility is focused on doing for rather than being with the resident or resident’s family. 7.2.2
Starved of time
The temporality of knowing, the nature of the relationship and knowing and how these are integrated into the care providers’ conceptualisation of truth-telling in practice has been established in the data. With consequences for this understanding the care circumstance was considered to be time poor as a consequence of workloads: BCT: (ii): (Carers) don’t have a lot of time, the girls, to talk to relatives or families. They really, they’re very busy, running all the time. They don’t stop and chat because they don’t have much of a chance which is probably quite sad in a way… D1: DE:… Unfortunately, the Government has cut funding so that staff numbers per ratio of Residents has also been cut and our work load is now greater and we nurses often don’t have the time to cuddle or comfort the Residents when they most need it…. ANL: (ii): (Carers) they’re too busy…(T)heir workloads are so big here they can hardly get their work done. They don’t even have time to say “Gidday, how’re going..’…But their workload is…too hard…
In contrast, a nurse’s view challenges the perceptions of the residency being starved of time. As a nurse said of her experience: CAH: (ii): (Y)ou’ve got more time to sit and talk with them (residents) and find out about their lives and you can generally relate in some respects.
Nevertheless, resident’s relatives may: CAS: (ii): …see it as they don’t want to bother us because we’re so busy…We’ve encouraged them to come and talk to us. We’re never too busy to talk to them as such…
Complementing the personal carer’s (D1) and nurses’ (ANL, BCT) position about time, a physiotherapist reflected in her Personal Journal about an elderly resident with whom she had spent some time talking (see also: Relationship). The resident was perceived to be emotionally ‘fragile’ about his admission into the residential aged care facility. The physiotherapist noted: B3: DE:…I did feel guilty for spending so much time with him, as the pressures of time are always great. Then I become somewhat angry at the management/powers that be – surely this 1:1 time is what our elderly residents need and thrive on the most? (A few less $$ on the facilities and more on the staff ratios)….
The physiotherapist feels responsible for or remorse for what she considers is a ‘wrong’. This ‘wrong’ is the expenditure of time with one resident knowing she needs to distribute herself (a scarce resource) amongst other residents within even less quantity of time (a scarce resource). The physiotherapist continued in this entry: B3: DE: … it is not physically possible to ‘see’ 60 residents twice – three times a week in the 20hrs allocated to physiotherapy…
A personal carer at C concurred: C1: (ii): (P)eople don’t find the time to do that (explain) and that’s a big thing. They just don’t find the time and..there’s so much to do – there is a restriction on time.
Residency is a locus restricted and defined by its temporality. The work of the care providers – ‘seeing’ to the residents, is about doing work in a limited time frame. Time is a scarce resource. The scarcity of this resource emerged in a nurse’s Personal Journal entry containing the Nurse’s Story: Caring for a woman who had Alzheimer’s. She revealed: EAO: DE: I give some of my insights into truth-telling of non-dementia residents. I think the basis again is always TIME in a nursing home. Most shifts you can get the shift to go well – a little time for everyone – 39 residents per 8 hour shift for 1 reg’ nurse and 3-4 personal carers. All you need is a fall – Dr’s visit – phone calls (eg replacements of shift or relatives concerns) to put you behind.
The implications of ‘little’ time are that the demands that a relative’s ‘concern’ bring to the shift are either an addition to the usual care work or risk being attended to as time permits rather than as the relative requires. A consequence of the time-starved care circumstance revealed itself in an interview with a personal carer. The carer discussed disclosing information even though her role perception meant she would ‘tell the ones I know, I mean, we are not supposed to but I do’ premised on: C2: (ii): …You’ve got the ones you can tell and the one’s you know that they want to know. But then I think that’s an RN’s (registered nurses) job again…but sometimes I think they’re (nurses) a bit stand offish with people ‘Oh, she’ll be alright’. They (nurse) haven’t got time, not all of them ..
About the temporality of the residency and its impact on the nurse, a A nurse (team leader) agreed with this personal carer’s (C2) observation: ANL: (ii):..(T)he workload is too hard for these kids (carers)…they don’t have time for the nitty gritty. Sometimes I don’t either. I have thirty-nine residents and I’m one registered nurse. How do you think I feel? Do you think I give quality? …There’s thirty-nine residents and they all ring up and they all expect me to spend time with them every day. There’s thirty-nine residents and they all have families or extended families and they come at that wing sometimes …they ask to see me…”Has Mum been so-and-so today?” I say “No, I haven’t had time”. I don’t lie for the company. I don’t lie for anybody. It takes so much out of you. I tell you thirty-nine residents and you try to get around them all.
In this time starved context, C2 reflects that the nurse can be ‘stand offish’ resulting in the nurse fobbing the relative off. Agreeing with the claim regarding lack of time but not the fobbing off, the nurse (ANL) answers honestly that due to little or no time she is unable to meet everyone’s needs. The nurse also parallels here a previous questioning (amongst C personal carers) about the residency successfully achieving ‘quality’ care. What is apparent is that claims for knowing (the resident and/or the resident’s family) and relationship building that are integral to truth-telling in practice are threatened due to the lack of time. Finally, in the context of providing ‘time for everyone’ (EAO) in care, a nurse at C noted: CAH: …I mean the staff here are amazing, really, I mean (CAS) been really really ill and she just come into work, because she knows that we have just so much short of staff…
There is also the issue of staffing (time in service). A nurse manager concurs that long term staffing is an issue in aged care saying: BAN: (ii): …I really believe that registered nurses don’t stay in nursing homes because of the need for so much (emotional counselling skills). In hospitals they can avoid it and that’s why the retention rate in nursing homes is low.
7.2.3
Waiting house
Conceiving of the residency as a ‘waiting house’ (a dormitory for dying) brings implications to truth-telling in practice when, in the care providers’ views their role is to minimize harm and also to manage disclosure about death (and dying). Herein, the care providers make clear that the resident entering the aged care facility is on a pathway to death: BCT: (ii): (P)eople are very aware of this, that this is the last home they’ll have. D2: (ii): ..We try to (make them) feel that they are loved for the last time, before they leave. That’s the truth, this is their last place… D1: … we know that the only way these people are going to leave here 99.5% of the time is in a plastic bag. CAH: (ii): …I think it’s probably important here to build up a relationship with the family because there’s only one ending with their relative.
This view, that the residential aged care facility is conceived of as a place resident’s spend ‘their last days on earth’ appeared in the first group interview of the research project. The nurse (team leader) engaged the researcher as follows: ANL: …(D)o you know what this place is? What do you think? What are we here for? What are these people here for? AT: Me? ANL: What are these people here for? They’re just waiting to go up to the St. Peter..OK! Waiting house..sad but true..
In the nurse’s (team leader) view, residency is a ‘waiting house’ for the dying. Below, nurses described the residency as: DNB: And also ours (residents) are mostly in the situation where the relatives are well aware of the fact that they (residents) basically don’t leave here as a rule. People don’t leave here for any other purpose except to go to heaven. DCI: (ii): …(Residency) is sort of an end stage…by and large people come here to spend the rest of their life and then they die. That is how they leave here.
According to the previous nurse (team leader) and personal carers, the aged care facility is understood as a ‘stairway-to-heaven’. Care providers acknowledge the residency as a place in which residents will die. Furthermore, the nurse also perceives the resident’s relatives as holding the same understanding. Nurses at E concurred. However, they insisted that they ‘don’t look at it this way’, they ‘don’t think about it that way’ - the point being that the work environment as a ‘stairway to heaven’ isn’t the way they approach their work. 7.2.4
Place of awareness
Residency as a place of awareness - in which the residents are perceived to ‘know’ prior to any disclosure, brings implications to truth-telling in practice that is dependent on care providers’ judging or gauging what another needs or wants to know, or whether another is capable of coping with openness. D3: They (resident) can tune into you and say to you “What’s wrong?” You may walk into a room and the resident may say “What’s wrong?.. I find that often they become attuned to what I must be thinking… It’s really uncanny sometimes. CAS: (ii): I did come in and something had happened, I didn’t say anything to this resident and he picked up. ‘You’re angry’ – I hadn’t said a thing…They notice a lot more than we think they do…Just sort of uncanny.
A personal carer at D and a nurse at C agree that the resident has a general awareness about the unspoken, and residents’ data support this view. A B carer reflected on an individual’s capacity for sensate knowing when her group spoke about a family’s decision not to disclose to a resident that the spouse had died. She reflected: B4: You know if your partner or your family, something..in your heart you know. If your family or something was happening, you would know and I believe old people have those skills and they would know if something had happened.
The resident is perceived to ‘know that something is wrong’. In the absence of disclosure, this knowing operationalises as suspicious awareness. The residents know (suspect) something is wrong, and whilst the family and carers are aware, the resident waits to be informed. Additionally, a D personal carer identified the resident’s awareness but assigned it to the context of denial and consequently engaged in mutual pretence: D2: (ii): He (resident) knows (but) he’s in denial. You can see he’s in denial and he knows there’s something really wrong ..but in a way he wants you to tell him and in a way he doesn’t..me, I will just say “OK, we’ve got that drift you and I. It’s there. When I look into your eyes, you know I know and it’s left unsaid’.
Herein, there is further support for the understanding that the resident knows by sensing bad news. This presents an interesting conundrum. Residents’ are perceived by personal carers to have the capacity to sense and therefore have an awareness when resident’s family demand of the care providers ‘Don’t Tell Mum’. Resident’s do talk about ‘quiet conversations’ and their experiences of family employing ‘Don’t Tell Mum’. Extending the understanding of resident’s awareness the care providers either accept or choose to deny that their truth-telling in practice (editing, tailoring or omitting the truth) could be known by the residents. Specifically, a resident’s awareness becomes most meaningful in the context of death and dying: D1: They know in the back of their minds. It’s the same as yourself, you know. You ask questions… D3: It’s sometimes very painful to say it D2: Maybe she could feel it, but then she had to get it out and she had to ask you, “Tell me”. That was her way. “Tell me” D3: Because people do. They go in and they cover it up and they say “Oh no, you’ll be right. You’re just sick now, but tomorrow you’ll be better,” and often they’re not, tomorrow they’re worse.
At the death bed, the personal carers acknowledge that the resident, aware of death, seeks a truthful clarification of their situation. This death awareness as perceived by the personal carers is, in their view, experienced by the resident and known to them both in the mind and (felt) in the body. Here, D3’s final insight is that other ‘people’ are in denial (‘they cover it up’) and fail to disclose (acknowledge) deteriorating health and the pending death of a sick resident/relative. In describing the nurse-family interplay in the care circumstance of dying a nurse manager revealed: DJJ: …I mean you will tell them. It also depends on where the family is, where perhaps they ask questions, because some of them have a tendency
to talk in front of Mother or Father and I struck this problem the other day. It was like, you know, “Do you think your Mum will still be here after / over the week end?” and this women says, sort of looking at us… DGS: Yeah, huh…
The nurse manager and her colleague (DGS) concur that conversations about a resident’s dying and consequent death in front of the resident are problematic. The nurse manager continued: DJJ: …and I say “Well are (you) going anywhere (Sarah) at the week end?” And of course she’s sort of looked at me and you know, you try to sort of I guess get them (family) to see that you’re talking about … Mum, so that at that time you say, “Oh no she’s not going anywhere. Come outside”…
The nurse manger utilises euphemism in the company of the resident and resident’s family member. Additionally, concurring with the residents in the study, she invites the resident’s family member outside the resident’s room for a ‘quiet conversation’. Finally, …and then you might give them (family) a little bit more information and say, “Well you know there is a possibility that Mum may well deteriorate”. Sometimes they (family) just don’t think, so what you are saying in the room and what you will say outside might be not exact opposite but might be a little bit different. I mean this woman, I did wonder if she would possibly die over the weekend, but wasn’t prepared to stand in the room and say: “Yes I think she will be dead by Monday”. It was sort of like: “No. You are all right aren’t you (Sarah)?” Outside it was sort of going through it a little bit more.
The resident is not included in the conversation nor does the nurse express here the possibility that the resident has the previously discussed ‘awareness’. What is discussed with the resident’s family member is not discussed with the resident – that ‘she (resident) would possibly die over the weekend…’. This phenomenon – the ‘quiet conversations’, presents the earlier cited paradox. The practice of disclosing further ‘outside the room’ when the residents and nurses (and carers) acknowledge the resident’s awareness, is questionable. Additionally, the perception that residents ‘know when they are being told untruths’ (C1) merely compounds the question of excluding the resident in the nurse-family conversation. In the context of death and dying, it appears more a strategy that isolates the resident rather than one of inclusiveness and respectfulness. Other than a general awareness and specifically an awareness about death, the personal carers at C perceive that the resident and persons are capable of being aware about ‘untruths’. C1: And they also know when they are being told untruths… C3: Yes C1: (ii): I probably wouldn’t lie to someone who didn’t have dementia, because they’d know you were lying..(Y)ou know the nurses you work with…and you’d know who would lie too.
However, in the same interview in which the carer recognises the resident’s having an awareness of a person’s ‘lie’ she conceded: C1: (ii): But I can do it (‘lie’) at work…. Like they (resident’s relative) wouldn’t know I was lying when I say to them ‘Oh, Mum’s fine today’ when she’s been a proper bitch. You know, I don’t know, I just pass it as a natural..I know it’s a lie..
The personal carers quoted above, concede that residents are aware when they, the residents, are engaged in open communication or ‘being told untruths’. However, here a carer (C1) adds that in her engagement with residents’ relatives utilising the benevolent lie goes undetected. This carer underscores a general understanding amongst care providers. In the same way that they would do unto another what the care providers would not have done unto themselves, they feel that they can do unto another (resident or family) without detection what cannot be done undetected by another to someone else. 7.2.5
‘Home away from Home’: Resident’s perceptions
Resident data offered a perception of their social world that is the ‘Home away from Home’: A1r:…since being here, you’re only as good as your environment. And when you see a lot of patients worse off than myself, I think, ‘There but for the grace of God go I’. We’re only a step away…
A resident reflected on her circumstance, acknowledging she had ‘come to the end of the road’. The researcher asked ‘So this open discussion (with family) about reaching the end of your road, why is that important to you?’: E1r:I feel that my life has no future at the moment…I’ve got 5 grandchildren and 2 sons and their wives. That’s my only interest in life at the moment, ..I watch the tennis and I watch the football and that - on TV, and that just fills in time. And luckily I’m a good reader. I read a terrific lot, otherwise I don’t know what I’d do with myself.
Residency is understood as a place for dying. Waiting for death, the resident fills in time watching – the television her company, her books her companion. The resident continued: E1r: There is very little social activity here…
Alone in her room, the resident experiences social isolation. The researcher continued by asking, ‘In your day to day life here, do you have an expectation that they (care providers) can sit and talk to you? Who do you talk things over with?’:
E1r: I’ve got two women here, (Margaret) and another one (Joan), I don’t know her surname… they come into my room invariably, sit and talk to me. AT: Are they carers? E1r: No, no they’re patients - inmates … AT: So you’ve established relationships with the … E1r: More or less. They’re not good friends or anything like that. I realise I can talk to them. We lend each other books and things like that. AT: Why do you use the phrase inmate? Tna1r: I don’t know. Is patient better known? .. AT: So, do you find that your social network comes with interaction from these two people. E1: Yes, and they’re on frames and they can get around..
In a personal carer’s journal, the residential aged care facility, is described by the institutions motto: ‘Home away from Home’. This residents experience and perception of the facility defines the ‘Home away from Home’ as a lonely place, with limited social activity in which she waits for death in the company of her television and books. The social interaction that occurs is in her room with two fellow ‘inmates’ who know the ward social order and qualities of the care and care providers. Rather than being an individual residing in her home, the resident considers herself and her fellows as ‘inmates’ – patients confined, unless mobile, to a room – a view consistent with nurse ANL. In contrast to the E residents asocial activity, a resident at C became firm in her opinion about what she understood to be the ‘normal part of (her) life here’: C3r: (ii): The normal part of your life which I don’t like it-they have musical things..Like sing old songs and they make you miserable…But I think they are trained to do it..It’s a Long Way to Tipperary – if I hear that again I’ll scream. AT: So, those old songs (upset you)? OK-have you told them that? C3r: Yes. I tell them that and they laugh. They say others love them. Well they do. They get out and sing… AT: But you want to leave it there? C3r: Yes. It’s past. It’s our memories and our memories alone.
It is not the isolation that this resident identifies as being part of the care facility’s social world. Rather, it is the use of group activity that silences the requirements of the individual. In this resident’s case, her social world becomes a part of the group rather than what is in her own best interests. The resident’s criticism of assumptions about interests and an absence of individual preference complements nurse ANL’s observation (see previous data section: Relationship) and E2’s Personal Journal entry (see above).
In addition to these views of residency, a resident’s data added a perception about residency’s social order: E2r: DE: There is a lady here who sat at my table for lunch. She had one leg & was blind & deaf… One day she started using her hands to feed herself instead of using the spoon….I started to feed her… (but stopped)… as my arm & shoulder became very painful…One day a Sister (registered nurse) saw this happening and said she’d have to be a complete feed, so they moved her to a table where they feed everyone like that. She (resident) hasn’t spoken to any of us since…she has gone right back into herself and won’t speak to anyone any more even the nurses. A sad case I think. We asked for her to be moved back to our table, but were told, “No can do”. We (residents) have to do as we are told..
The resident’s journal entry portrays her ‘Home away from Home’ as a place with well defined care (task) roles and equally well established behavioural expectations. In this ‘Home away from Home’ she perceives that residents ‘have to do as (they) are told’ by the care provider (in this case, the nurse). This understanding – the conforming resident in a well demarcated care environment with clearly assigned tasks was apparent in an interview with a personal carer. The personal carer revealed her sense of the quiet, non-questioning resident: C1: (ii): …If it (resident with rash) was me, I’d be saying ‘Look, I’ve had this for a long time, it comes and goes, it’s got to be something. Obviously the cream you gave me is not treating it properly, is there something else we can do?’…
Clearly, the personal carer is not the resident. Hence, the personal carer as the resident, questioning the treatment and engagement with the care providers is not what she – the carer experiences as the behaviour of the resident. The resident is portrayed as silent and accepting. 7.2.6
Starved of time: Resident’s perceptions
A resident perceives that neither the nurse (registered nurse) nor the doctor ‘have time to tell’ her ‘things’. Her perception is that the doctor’s busy work and family life impact on her ability to seek information, saying: A1r: The doctors don’t have time, they are busy, they have their family. (I) (d)on’t want to be additional work. They don’t have time to tell us things. So I go outside nurses or doctor within the nursing home…
Herein, there is a view that the residential aged care facility is time starved, which in turn impacts on information seeking and sharing. A resident elsewhere commented: E1r:..I have my clothes out ready.. anything I can do to speed up, because they’re always in a hurry first thing in the morning at half past 6. They just do the absolute minimum of what they have to do for you. I mean they have to go and get the breakfasts.
Care providers have busy lives and the care context is loaded with tasks to complete. The resident said, in response to ‘(D)o you have the same kind of openness and expectation for openness whilst you’re here amongst the workers (as you have with your family)?’: E1r: Not as much as I do with my family. I'm very interested in the girls and in their home life...(S)uch a lot of them are grandmothers. And I’m really interested in that and we talk about that… But that only happens when they’re making my bed. They don’t come in here and sit down. This (talk) all happens when they are doing their work. They haven't’ got time to sit down. They’re very busy.
Overall, the resident perceives the care facility as a busy place in which the care providers (carers) engage in social, superficial talk within a relationship that emphasises the routine nature of care – tasks. A consequence of the time starved care context as understood by the resident is the long term impact that this lack of time has on the quality of care provided. In a follow up interview, a resident perceived the residential aged care facility as being a place of work unsuited to her. She said: A1r: The thing is the way the nurses have to go flat out here, I don’t think they’ve got time to think, you know..I can cope with myself and everything that happens to me at the moment but say in a months time I could have another stroke and be flat on my back and not know where I was, with some of the ones (residents) here, they don’t know if its Monday or Friday. I really don’t know, someone has to think for them. So it’s the circumstance you find yourself in…Human nature being what it is, its one thing or the other, I’d rather not be in the position to have to look after people. I couldn’t do it.
The resident observes that the ‘nurses’ are working at a pace that impacts on the care provider’s capacity for thinking about what they are doing. Tasks are completed with little opportunity for reflection and evaluation. This resident acknowledges that under these time starved, task loaded circumstances the more able bodied and competent resident is able to ‘cope’ for her or his self. However, the resident expresses concern for the quality of care that can be maintained when one cannot cope in an already busy place, characterised by the ever changing health status of the residents around her. C2r: (ii): There is a definite ‘busyness’ about this place. There’s too much work for too few people. And you feel things aren’t given enough time. You take my physio’ even. I’ve never had hands on physio’. He walks in here but hands on physio there’s never time it seems. I should say that’s (the) case often. Doctor’s visits are very brief.
A fellow resident recognised the facility’s ‘busyness’ as a consequence of staff shortage, saying:
A2r: ..I just ring the buzzer and when they can come, they come. I mean you can understand that they can’t always come straight away, you’ve got to be understanding. They are short staffed. I can’t even turnover by in the bed myself ‘cause I have pillows between my legs and everything. … A2r: If I hear them talking in the hallway I let them know.…I buzz ‘em. And I say “I heard you talking in the hallway. Couldn’t you turn me please”? It doesn’t hurt to be a little outspoken.
The ‘understanding’ resident recognises that the residential aged care facility is short staffed. Consequently, in a care environment that is time starved, task loaded and short of staff, the care providers cannot attend to the resident’s needs immediately. Residents who are highly dependent on the carers and nurses for their care, but who are competent, need to be assertive. 7.2.7
Place of awareness: Resident’s perceptions
In the previous section: Relationship, this resident group data revealed: C4r: Well they say: “Don’t tell mum!” (tapping finger on the table) C3r: “Don’t tell Mum!” C4r: Now that is common knowledge. That’s what your family say: “Don’t tell mum!” (tapping finger on the table)
The commonality of the family’s request “Don’t Tell Mum” underscores the residents’ awareness. Residents see and sense ‘quiet conversation’ in ward corridors, outside the resident’s room. This they observe is the family requesting that the resident not be told. The resident is aware of something and the family is aware but will not share what they know. The result sets the resident in suspicious awareness. Additionally this group said about ‘quiet conversations’: C4r: Well the majority of doctors, when they come to see a patient, or that they don’t to a patient, they get the family outside and tell them. Which happens all the time. C3r: That’s right.
The resident confirms her colleague’s perception. Previously C3r described the ‘quiet conversation’, saying ‘…after you have seen the doctor, they gather around in a group and..you can hear them….’. Above, the resident emphasises that ‘…the majority of doctors don’t (talk) to a patient…’ - conversations are had between the doctor and family whilst the resident senses, observes and hears lowered voices. Information is not openly shared with the resident. The residents’ suspicious awareness is bought about by ‘quiet conversation’: C4r: You sense it, don’t you? C3r: You sense, you see them having quiet conversations in lowered voices. AT: Who?
C3r: All your family. “What did the doctor say”? After you have seen the doctor they gather around in a group and..you can hear them….
The residents’ suspicious awareness comes about as ‘quiet conversations’ the resident observes and hears the family having after a doctor’s round. Therefore, data support the fact that family, carers and nurses all instigate protection in the guise of therapeutic affect, so overriding truth-telling but promoting resident’s suspicious awareness. The residents seek to be made aware by others: C4r: Well I think, isn’t it better to know the truth, just to hang on, sort of wondering and worrying what is wrong with you. C3r: That’s right.. .. C4r: Because worrying will only kill you anyway. So you might as well know the truth and I know that my time is short and I accept it.
The residents in this group discussion share the view that being uncertain and having a vague notion of something, weighs more heavily than knowing. Therefore, they share the understanding that non-disclosure or vagueness causes worry and anxiety in contrast to the carers’ and nurses’ view, that disclosure is ‘harmful, damaging or upsetting’. Residents worry without awareness - carers, nurses and family consider awareness will worry. For example, a resident revealed: B3r: … Personally I think it is better be told, so you can get on with you life rather than live in the dark…. You have got to get on with you life and find out what’s wrong with it. That’s the main points.
The resident’s focus in truth-telling is the disclosure of his ‘condition’. His preference is for open disclosure. Truthfulness allows the resident to be autonomous. The resident group in this study point out that they seek to be in control. Being aware of their circumstance and condition allows them to be in control of the self. A resident from another group adds, in her reflection about her Parkinson’s disease-like state: B1r:… I have accepted it, that it is not going to improve any and I also accept it that my own way of thinking of it as I grow older it will get worse, because age does make these things (better). But it doesn’t worry me now that I know it, it’s permanent with me. I am glad that the doctor told me that.
Open
awareness,
‘know(ing)
the
truth’,
diminishes
worry.
The
resident’s
understanding that open disclosure produces less rather than more worry is in contrast to the beliefs of carers or nurses who edit the truth to reduce worry, anxiety or harm.
7.3
Daily Reality: Truth-telling in Practice
It has been proposed throughout that what the care provider does (role) for or with the resident or resident’s family cannot be clearly separated from the nature of the relationship that emerges within the care context (residency). Previous analysis has established the interconnectedness of relationship-role-residency as the trilogy relates to truth-telling. It is at this juncture that these elements bring the reader to the study’s complete appraisal of truth-telling in practice. The understanding of truth-telling in practice examined here relies on the discussion and interview data from amongst nurses. Data throughout the study support the proposition that the same understanding and operation exists amongst the personal carers: DJJ: I guess the thing about truth-telling is that of the opposite that your not telling the truth. It’s telling lies. But there is truth-telling and there is sort of omitting pieces that you sort of feel again to be harmful or damaging or upsetting so it’s more…you’re easing and omitting. And it sort of comes back to I guess to that truth-telling concept that it is what we don’t say almost, that becomes kind of truth-telling or otherwise. You are not telling a lie, you’re just not telling them all the pieces… DNB: All of the truths. DJJ: You are not giving a whole story… DGS: Yeah…
The nurses and nurse manager understand truth-telling comprising cause and effect. What they do and understand as a condition of their residential aged care, is to distinguish between truth-telling as telling a complete truth and truth-telling as communicating a partial, edited or tempered truth. It is this latter understanding – expressing an edited truth, that describes what they do. The edited or ‘minimized’ truth (EPO), as suggested by the processes of ‘easing and omitting’, was identified by another nurse at an interview as ‘reasonable’: DCI: (ii): Yes, I think that is reasonable. We’re not going to say “Look…Mum is dying. She’s not to be here forever”. But..”She’s deteriorating slowly, ..she’s frail..” etc. Yes, there is the gradual easing of people into the idea so they’re not totally shocked when Mum..does die… We’re not ..hitting them over the head with it. I don’t know that we omit enough that people will not get a true picture…
Agreeing with this understanding, a nurse at another aged care facility (B) added in a follow-up interview: BCT: (ii): …Like possible they (we) leave out some information for a daughter who might be sensitive but tell the son everything. You still tell the truth but, or is it lying by deception? But sometimes when you know people well, not all they want to hear but what they can’t cope with or what would be unnecessary and possibly cruel to tell them some things.
Premised on the nurses’ judgements about capacity to cope with information, parts of the ‘whole picture’ (disclosure) are not revealed. Furthermore, the nurse manager suggested: DJJ: Yeah…So I guess they can’t come back and say “Well you didn’t tell me the truth”. Well it’s pretty well like, “Well I didn’t tell on that bit”. I just didn’t broach the subject because for one reason or another I felt that I shouldn’t or I couldn’t or it was perhaps unnecessary for them to know because it was a distress.
The edited truth – a minimized disclosure, partly reveals what is understood. The nurse manager perceives such an understanding counters claims of outright false utterances. EPD articulated this same understanding in the nurses’ group, when she said that they understand and operate from ‘the basis of the truth’ but agreeing with ELQ, that in practice ‘it is about what is not said, about omitting, that truth-telling is understood’. The nurses and nurse manger in the D group continued: DNB: It’s failing to mention all of the truth. DJJ: Truth-telling by layers…truth tell by layers…
Truth-telling in practice is further understood as stratal. This meaning is consistent with EPD’s ‘levels of truth-telling’. The nurses in the D group agreed that what they do is ‘not telling..all of the truths’, ‘not giving a whole story’, that they ‘don’t give the whole picture’ and ‘don’t tell the full story’ – particularly, in accordance with their role, to resident’s family. Furthermore, the researcher continued (with the original D group of nurses): AT: (Y)ou say you don’t tell them the ‘full story’. Where are you coming from…? DJJ: Yeah, what are you keeping back and why? I guess what you tend to keep back is things, not so much about their condition in terms of perhaps their medical health, but you filter through to them some of the information. For example, we have got a lady whose husband is in one of the dementia specific areas,… She will say to us, “You are not going to send him away are you?” and we will say “No, we are not going to send him away”. But at the back of your mind you are thinking, “Well we probably aren’t at the moment, but there is a possibility we might”. But because she is so distressed.. you tend not to. You do a little bit at a time… So I guess when I say we are filtering it, you are giving them a piece of the story as you see how they are going to deal with it. And when she says, “ You are not going to send him away?” I say “No”. I don’t feel as though I am lying, because I am talking about now and I don’t go on to say, “Well we might have to consider it in the future”.
‘What is said’ does not include ‘mis-truths’ nor is the intention to convey ‘false impressions’. However, ‘what is said’ is made more meaningful when truth (that is, what is understood) is described to exist in time. Above, truth is transitional, variable and conditional. Additionally, ‘what is said’ compounds in meaning by association with terms like ‘filter’, ‘keep back things’ and ‘not the full story’. In essence, half-
truths. ‘What is said’ is not false but what is disclosed is partial. Over time, the nurse manager provides additional information-that is, adds to the ‘half-truth’, gauging the response by the relative. The edited truth evolves over time to the whole story truth. Additionally, the nurse manager here utilises mental reservation to rationalise her half-truths. Through mental reservation she holds in reserve, in her mind’s eye, the whole truth. In this way, she perceives that she doesn't lie. That is, the nurse manager’s deceiving response: ‘No, we are not going to send him away’, is converted into a true statement by the unspoken thought: ‘..at the moment. But there is a possibility we might’. A nurse (team leader) from D, was asked at interview about what information is omitted. The researcher sought to test his interpretation that ‘You omit to disclose to family an event or resident behaviour perceived – gauged, judged, to cause family upset and over which the family has no control. This event or behaviour will not impact on the resident’s care plan’: DCI: (ii): I agree with that…it’s sort of on a need to know basis…(I)f its an event that isn’t really going to alter anything as far as the way we care for the resident..then the relatives don’t need to know. Then yes, I think we would omit it’
Within the same interview, the nurse identified what she understood the residents’ relatives ‘need to know’ and do not need to be told: DCI: (ii): …The basic sort of things about (their relative’s) condition and changes to the care, type of care we’re giving them. That’s something they (relative) need to know. That they have developed a chest infection..they are becoming more frail..that they aren’t communicating as much… The person is deteriorating physically, we’ll tell them that…they’re not eating so well, ..not drinking so well..becomimg less mobile… It may upset them. They don’t have any control over it, but it will alter the care plan. It’s part of their need to know.. Different things like they (relative) will get the picture without having to know. They’re (resident) being noisy and difficult…
In contrast, the nurse recommended that if the resident’s relatives do not need to know, ‘we wouldn’t say…’: DCI: (ii): She’s (resident) been screaming the place down all day, they can’t do anything about it, they can’t change it.. We won’t tell them (relative) that they (resident) are faecal smearing.. (T)here’s just some things, I guess they’re taboo that you just don’t talk about it..it is upsetting…
Offering a cautionary insight that countered the aim of minimising harm (emotional distress) through the partial and non-disclosure of information through ‘filter(ing)’, ‘keep(ing) back things’ and not telling the ‘full story’ a nurse (team leader) at A recommended: ANL: (ii): …It is in the telling, and as I said we don’t know how much we can take. But you’re better off with the truth. You know that answer now. And these people (residents) can take that. They’ve been there and done that. Most have lost their families, and you’re not going to tell them (anything) that’s really that bad.
The nurse (team leader) at A cautions against protecting residents from the truth premised on a view that they may not be able to take it. In understanding truthtelling in practice, generally speaking, for the nurses in this study the agent for disclosure is the resident’s relative. This is explained by the role definitions (see: Role) and here in this section again highlights that in the context of telling – sharing information with the resident, the nurse data are silent. 7.3.1
Treatment truths
The following data analysis in this sub-theme brings closure to the understanding of residency as perceived by the care provider. Having established how the residency is conceived and the nature of truth-telling in it, the following data demonstrate the machinations of truth-telling in a variety of specific care circumstances. Specifically, these care circumstances aim to show truth-telling in practice as effected by the influences
and
understandings
of
relationship-role-residency.
Some
data
demonstrate truth-telling, as practised, influenced by other factors. A personal carer wrote: C1: DE: If it is a harmless lie to keep a resident from being depressed or unhappy.. I do feel that major lies told in the realm of deception (ie) regarding their services or even their medication or diagnosis of illness, or if they are advised that they are going to get something to benefit them and they really are not, then that is deception and staff (no matter what their role) should not be put in a position where they have to tell deliberate lies.
A distinction is made between a ‘harmless lie’ and a ‘major lie’. A deception is a lie (major category) when the intention (therefore a deliberate act) is to pass on a falsehood to another about ‘services’, ‘medication’, ‘diagnosis’ or treatment. On the other hand, in a care situation in which a harm, such as a resident’s unhappiness or distress is to be avoided, the lie is considered ‘harmless’. This personal carer’s reflection on treatment untruths as being elements of the care circumstance reality she works in, acts as a template for other data about ‘services’ deception:
C2: We’ve even had relatives that have put their parents (residents) in here on the grounds that they (relatives) have told a lie too…He doesn’t kick he doesn’t wander…“Oh no Dad never hits” this and that. And then after they (residents) have been here a while, it comes out, “Oh Dad used to always hit Mum..’. But they lied to get him in here. … C3: There was one that took her mother out for morning tea at Myer’s once. Took her to the nursing home and dumped her and went. … C3: There has been a couple over the years actually where they’ve said, “Oh come on, we will take you out for morning tea. Lets get them in the car”. And then they take them to the nursing home and said, ”Well, that’s it” C2: Yeah. But they are lying to get them in here. C3: But she (daughter) lied to get him, to get him to come in the first place.
For comparative purposes, these carers’ understandings were discussed in a followup interview with the nurse (within the same aged care facility). The nurses confirmed the understanding, saying: CAH: (ii): It does happen. It can happen. One of the cases it happened. She’s been here a couple of years…the son told his Mum that she was just here for a couple of weeks…So they (personal carers) were right there. CAS: (ii): …I do know for a fact the son..bought her up here and I think she was told a story, not the fact she was going into a nursing home…It does happen unfortunately…Relatives’ getting people into nursing homes under false pretences does happen.
Care providers recall the deceptive practices of families to secure a residential aged care placement for their relative. Whilst reference has previously been made to Mr W, (see previous data and discussion: Role), an understanding about possible services deceptions was offered as a physiotherapist wrote in her personal journal: B3: DE: ..I gave the stock answer: “I will come approximately twice a week”. This is the expectation delivered to relatives by management at the door of the Nursing Home, and with best intentions it is not physically possible to ‘see’ 60 residents twice – three times a week in the 20hrs allocated to physiotherapy.
In the context of a treatment truth, the physiotherapist perceives that the residential care expectation is a false creation of the institution. Later, in a follow-up interview the physiotherapist clarified, saying: B2: (ii): ..I’m aware that as residents and their families are interviewed on their way in, they are generally told that they’ll have a physio’ twice a week or so and that’s probably more than I can physically hope to get to people…I aim for twice a week but it often doesn’t happen.
The inadequate time (and funding) distribution means that meeting the service expectation of the resident’s family is impossible. What is promised ‘at the door’ is
‘often’ not delivered. Suggestions of this type of service deception further emerged during an interview. A C carer was asked about ‘half-truths’ which are considered to be told during the case conference. The researcher asked: AT: (ii): …Why do you think only ‘half-truths’ are told? C3: In some cases to make out that things have been done that aren’t. Like sometimes he (resident) gets taken to activities when he doesn’t, he gets music played when he doesn’t. I think its getting better now..but it used to be..a bit of a joke at the case conferences….
In addition to types of ‘services’ deceptions, the earlier C1 carer spoke about ‘their medication…in the realm of deception’. Medication mendacity manifested itself as follows: D1: DE: We have a resident who .. refuses to take necessary medication because she feels we are trying to poison her. She can become quite violent if we try to coerce her to taking her medication… it is necessary for the resident to take the medication. In this case, no amount of lying, coaxing or trying to conceal the necessary medication in food/drink or sweet to get her to take her pills….Lying obviously does not help in this situation. The resident loves her coffee and we often offer that as an incentive to take her pills but again that does not always work.
Whilst deception in this case is deemed of little use, its usefulness has been evaluated. Asked to verify this case and the practice of ‘concealing, mixing (and) denying medication’ in ‘order to get them (resident) to take it’ a D carer acknowledged that is: D2: (ii): Realistic – they (resident) must have it (medication). Most of them (nurses) do it here.
This is to say, as with the Melleril case (below), deception is a considered strategy. In cases of residents refusing (medication) treatment deemed to be necessary by staff, complicity to the regime can be achieved through lying (benevolent deception). This lying is premised on the resident’s wellbeing but also to prevent harm to staff and other residents, and maintaining ward social order: CPJ: There is a gentleman here at the moment though who is on Melleril, ..and the only way that we can get him to take it, is to tell him it is for his prostate problem…. (E)ven the doctor said to him it’s for your prostate with his fingers crossed. But I mean he takes it..
In this case, telling the truth would result in the resident ‘go(ing) off’, ‘throw(ing) it’ and ‘belt(ing)’ the staff (CAS, CPJ). The resident’s family agree with the strategy, however: CPJ: But I am not comfortable with that though. I don’t feel happy about the fact that he is taking it because he thinks it’s for his prostate, but I know that with out it, he…starts screaming and shouting and…Anytime you were in the
room with another resident he would become abusive .. I mean we don’t like using Melleril… we can’t manage him any other way. … CAS: .. So I think we are being quite reasonable. Well you have got to look at the safety issue..(I)t’s lying to help isn’t it. I mean it’s still lying but you are doing it not to hurt anybody as such. You do it to prevent hurt and such and to help him.
Whilst the deception is agreed upon by the health care team and the family, the nurse manager expresses some dis-ease. However, on balance, the treatment deception is justified, because it prevents physical and verbal abuse toward staff and other residents (harm) and maximises compliance, social order and safety (instrumental goods). Furthermore, medication mendacity exposed itself under a different guise: C2: DE: There are lies that can hurt the resident. Years ago I worked with a nurse who would write down that the resident bowels had gone even if they hadn’t been just so she didn’t have to clean a resident up after a suppository. This can cause a heap of problems for the resident. When I told a RN she (other nurse) again lied, making out I was the liar. Some people are very convincing when telling a lie. But the RN (registered nurse) kept an eye on her and she eventually was found out.
Earlier, a colleague in the same group defined such falsification as a ‘major lie’ (C1). Whilst this case is historical, a similar ‘falsification’ process pertaining to drug administration was described by a E nurse. In an entry into her Personal Journal, the E nurse revealed the use of medication for maintaining ward orderliness (past and present): ELQ: DE: Not quite so many years ago – I was an RN (registered nurse) on night duty. The first thing you did was put your sleeping pills in one pocket, the pain relief in the other. There were 73 residents, only the odd single room. You couldn’t have people wandering into others’ rooms and waking the whole place up – and the rest peeing (urinating) behind doors etc etc etc. You didn’t have the staff to supervise while working in other areas. You popped pills – you didn’t always sign for – but you were in charge and run the place to the best of your ability for the best outcome for all.
In the nurses’ past (‘not quite so many years ago’) not accounting for the administration of sedatives and pain medication was deemed part of the nurse’s practice. The nurse was silent about her covert actions. However, she continued: Circumstances have changed today as there is more control over drug prescriptions and what are PRN (as requested) orders – believe me – every pill is accounted for today I do the same today but not in the same manner – it’s signed and above board.
In the current care circumstance, the nurse accounts for the administration of medications as required by law. The nurse is open about her actions. Whilst the rule of law has ensured treatment truth, the maintaining of ward order remains a priority.
Whilst the previous C1 personal carer alluded to treatment deception as being advised then denied ‘getting something to benefit them’, data existed about a number of isolated incidents that involved denial as cover up, silence and pretence in specific treatment situations. The carer (C2) describes her cover up lie for a work colleague who assaulted a resident: C1: Being caught out telling a lie, could be very embarrassing for people too, in circumstances. .. C2: I wouldn’t lie if I had done something wrong, yet if it was to concerned me and somebody asked well I couldn’t lie. I tried once and yet they knew I was lying. They told me..(I)t was about another nurse who hit a resident.. well I didn’t see it, I heard. And they just said “You (me) are lying, we know”. And I couldn’t lie. But if I mean it’s me I’ll say “Yeah all right I did do it”, because it is me, I’m not hurting anyone. I am telling the truth.
The personal carer lied so as to avoid a harm being promulgated toward her work colleague when her colleague had harmed (physical abuse) a resident. This personal carer’s lie is consistent with those of care providers in this study who generally do not disclose or partially disclose the truth in circumstances to avoid harm being promulgated against another. The carer admits that the risk of exposure for a cover up lie acts to reduce behaving in this way. Again, truth-telling or false utterance is evaluated in consequentialist terms. In a different incident, a nurse recalled her frustration about a failure by another to disclose: CAH: DE: …I find it hard to work when something has gone wrong – for instance I find a person has a skin tear and nobody owns up. Some people do not seem to have a concious.
The nurse, writing in her journal, cites as an example of failing to disclose a treatment truth, a skin tear she later finds on a resident. Elsewhere, a group of D nurses discussed as a treatment deception an incontinence deception: DJJ: This is where continence pads are wonderful..Mum or Dad would be sitting there and they are wet, and know they are wet but of course the continence pad just sort of covers it up so they (relative) are almost like a …”Oh Mum’s fine, there is no problem with the continence” – no, because you (resident) have a continence pad on… In a way that’s almost like a bit of a. DGS: Hiding it… DNB: Denial… DJJ: But I have a family say, “Isn’t that nice now Dad is not incontinent”… DGS: Hahuh (laughs)..
This discussion was reviewed at interview. At interview, a colleague DCI suggested: DCI: (ii): …I think most people have an understanding that incontinence is a sort of reasonable sort of expectation when you become elderly….I wouldn’t think that is too hard to handle…
However, the original group conversation continued as follows: DJJ:…and I am thinking: “Yeah ok - Sure he’s on pads”. But then I realise “Well, he is not (continent) really is he”? I mean it is contained, that’s what you use incontinence pads…. DNB: And he smells like it… DJJ: That’s right… and he thought it was marvellous. Well I thought, “Yes, he is terribly incontinent”, but hang on so what? Well, it’s not harming anybody. They don’t have to come in and look at the wet clothing…
The incontinence pad maintains the ‘vision splendid’. That is, it protects the family from a ‘smell(y)’ truth. However, the reasoning – that no harm is done, and the family’s belief that their relative is continent is grounded on a deception. Unless the resident is cognitively impaired, s/he knows s/he is incontinent and the interaction facilitates mutual pretence - the family say “Dad is not incontinent”. Whilst continence pads do make uncontrolled micturition manageable, the family’s understanding that “Dad is not incontinent” is a false understanding. The nature of this is a pretence since: DCI: (ii): …I don’t know that we deliberately say Mum is continent when she’s incontinent….I’m sure most people whose parents are in here and are on continence pads, know Mum or Dad is incontinent….(I)t’s just not in their (relative’s/family’s) face..it probably is part of the omitting, it’s just not saying.
However, toward some contrast to the above medication mendacity and treatment deceptions and cover-ups, the C nurse group recognised a relationship between honesty and medication compliance: CAS: No, I tell what it (medication) is for in the simplest of terms. Otherwise I know they (residents) are not going to understand it. You know, like if say they are having Lasix, well just say, “So you don’t get any build up of fluid as such in your body”..explain it in the simplest of terms. CAS: I think, yeah, if you do tell the truth, you have got more chance of them taking it.
In this group, nurses perceive that residents have a limited capacity to comprehend (complex) information. However, an honest explanation can be made in simple terms that results in the majority of residents complying to treatment. 7.3.2
Dementia truth A2: (ii): ..(Y)ou’ve got to remember that ninety-five percent of the aged people we deal with have got a form of dementia or Alzheimer’s … C1: (ii):..We have a lot of people in extra services and that’s my area who do have some type of dementia…there are very few, very few people who don’t and I’m just not sure of the ratio..a lot of them.
In light of the above points of view, any discussion about telling another the truth in aged care must include an analysis of data that associates dementia and truth (telling). It is noteworthy that a nurse recognises that a resident with dementia has insight or awareness. The nurse recalled a resident, ‘Brian’: CAS: (ii): …I didn’t say anything to this resident, anything, and he picked up “You’re angry” – I hadn’t said anything… AT: And he has dementia? CAS: Yes. So, he knows….So, it’s very strange and it’s just uncanny how they pick up on things.
By comparison, the nurse later revealed that in the company of an ‘upset and crying’ resident with dementia who is ‘continually asking all the time ‘Did so-and-so ring?’ she might: CAS: (ii): …even say if so-and-so has not rung. I might even say, “So-and-so did ring but I couldn’t get you to the phone”, or something like that. (O)ften you’ll find that will calm them down.
Within the C group discussion a nurse manager spoke about truth-telling in the context of a resident with dementia: CPJ: I have lied about ten times today. One to a resident because she is going to a dementia unit and she wants to know if it is in ----- and I know the only way she is going to accept it, if I say yes, so that’s a lie…..
A colleague responded and a personal carer at A agreed: CAH:.. We actually get into their reality, and I mean what we say is not the truth… So, and that settles her down. CAS:..Someone is asking for the bus and I said, “Look I’m sorry but you have missed it”. (Y)ou tell them whatever they want to hear, that you know is going to calm them down. To me it is not out and out lying… A2: (ii): There is one particular woman (resident) here who wants to run away all the time. You settle her down by telling her that the trains are on strike.
The validation of the dementia resident’s reality is ‘not out and out lying’ since the nurse’s intention is the therapeutic response of ‘settling’. The nurses here consider validation with dementia residents to be making false statements for another’s well being. CAS: … your lie isn’t going to hurt anybody. You colouring the truth is beneficial to them. That’s the way I see it. It is just being… CAH: It’s an understanding of dementia.
A conclusive distinction is made between the ‘out and out lying’ and the dementia ‘colour(ed)’, ‘calm(ing)’, ‘benefi(cent)’ lies. An insight into the meaning of ‘colouring the truth’ for benefit emerged in a follow-up interview. In this interview, C AS explained the use of ‘fudge phone calls’:
CAS: (ii): I’ve got a woman at the moment who continually goes on about her sons. ‘Have they rung? Have they done this?’. I say “Yes”….(W)e can’t be phoning all the time..So I now actually do what we call ‘fudge phone calls’, where I pick up the phone and maybe dial my phone number. I’ve got an answer machine so I just let it ring. Or I just pick up the phone and I won’t push ‘out’ for out..I’ll just dial the number and just hold it there. That calms her down… I’ve also got a deal with (Greg) her son, and if (Greg) answers, I’ll say, “Oh, he’s not home today”. And (Greg) says, “OK, Bye”. And I just hold the phone there a bit longer as if it is ringing.
Elsewhere, a personal carer defined validation: D3: It’s much better to validate with them and let them think what’s in their mind is real than to disillusion them. They are happier in their little world … A2: (ii): Sometimes residents will take to you for some reason. You remind them of someone from their past and what harm is it doing to be that person if it makes the resident feel more content.
The personal carer recognises that the resident with dementia exists in a reality removed from the real world (understood to be true) reality. Communication with the dementia resident requires validation of the resident’s reality. This communicative process is described in the context of dementia care, as: B2: … just a big story. C2: … you just play along with it and it makes her life happy. You know that it’s not worth telling her the truth. You just play along with it. C3: That’s why we have to tell a lot of lies. Because it’s for their benefit.
Finally, the communicative process with residents perceived to have dementia was described as ‘bullshit’: E1: I bullshit with those residents who are not in reality. You play along with them, those with dementia. You need to get in with them in their own reality.
The care provider group construct validating (dementia truth) the dementia resident’s reality as benevolent lying. The carers recognise that the true reality (the reality the carer occupies) is separate from the resident’s reality (a false reality from the carer’s perspective). From this perspective, affirming the resident’s false reality for therapeutic outcomes (that also benefits the ward’s orderliness) is perceived to be ‘tell(ing) a lot of lies’ (C3). Whilst care providers recognised dementia truth (validation) as a therapeutic response appropriate in dementia care, some care provider data evidenced some inconsistency about dementia truth. Within the data about dementia and telling the truth, emerged an uncertainty, a difference of opinion amongst care providers, about the communicative interventions or therapeutic strategies utilised.
A personal carer’s criticism in her Personal Journal describes her discontent about a family’s request that staff not tell a resident with dementia that the resident’s husband has died: B1: DE: While saying there are occasions where not telling the truth can achieve certain goals there have been situations where I have disagreed with family members not telling the truth to a resident. A resident who had dementia and was German.. One day her husband died but the family members would not and did not want staff to try and communicate the situation to her…The mother became more and more withdrawn.. and within one year died herself. Even though technically it was not lying, it was not telling the truth, but treating the resident as if she did not have any feelings just because she had dementia… I still do not understand why the family chose this line of action and whenever I saw her, I could almost feel her pain.
The B group, and this carer in particular, were critical of the request by the family based on assumptions about dementia. These personal carers were critical of this family invoking the rule ‘Don’t tell Mum’, but use this rule with other residents when it is carer-determined and with perceived justification. Even though a personal carer within the group proposed that family use the rule for the same reasons as the carers (ie resident to ‘feel at ease’) the carers defend their use of the rule over and above that of the family’s. In contrast to the B carer group’s discontent, but consistent with personal carers’ role and practices, a personal carer from a different residential aged care facility agreed with the non-disclosure request. Reflecting in her journal, the personal carer wrote: A8: DE: … I have had similar situation here the wife was in a serious car accident and the husband Mr (Smith) (is our resident) we weren’t allowed to tell him what happened to his wife. Mr (Smith) has dementia…I had told him his wife is having a rest and she’ll be up later in the day and or she’s just phoned and she’s running late.…(W)e had lied to him this had calmed him down and eased his mind that his wife hasn’t left him or doesn’t love him any more. We as personal carers have the obligation to help our residents in anyway possible for the safety of them.
The truth is omitted and a response provided that calms the demented resident’s anxious state. A nurse manager reflecting in her journal expressed a different uncertainty: BAN: DE: (5) This is difficult with dementia. A recent thought on whether the placement of a fake bus stop is a betrayal… If projects like this produce calmness then it could be claimed a useful exercise.
Later this was elaborated in an interview: BAN: (ii): (Above) is saying that in dementia they use tactics that aren’t truthful to produce calmness but it isn’t truthful and I do have some difficulties probably
with some…strategies that are like ..depends on how extreme it’s done I suppose. It is therapeutic but it is still not telling the truth.
‘This is difficult with dementia’ – truth-telling is difficult with a resident with dementia. The presentation of the ‘fake bus stop’ is thought to be a ‘betrayal’. Validation is thought to be a ‘betrayal’. Fakery is ‘useful’ if it ‘produce(s) calmness’. Validation is useful fakery but a betrayal. Such validation requires ‘not telling the truth’. In addition to the collective opinion amongst care providers, about the communicative interventions or therapeutic strategies utilised, there emerged amongst the personal carers a difference in understanding about dementia care per se and the communicative processes deemed appropriate. B2: (ii): I work in a dementia care unit..I don’t very often have the pleasure of saying ‘This person is in full control of their faculties’, and so perhaps with my experience of working in a dementia unit you sometimes are without rules, guidelines, props, something – you know. It can be very difficult.
For example, this personal carer is uncertain about the place of orientation and confirming another’s reality: B2: Yes there is truth. There is their (resident’s) truth which is a real truth to them. I mean someone with dementia, don't they, their truth and its quite true to them..(S)o maybe you convince somebody who is living in that truth, that’s not true..you know? B3: Do you need to? … B3: Isn't that the trend in dementia care now? To go into their reality rather than trying to fall back to ours?
The carer (B2) makes a distinction between dementia truth and carer’s reality. The carer expresses a misunderstanding about dementia (depending on the type). Her colleagues confirm validation as the appropriate (dementia) truth rather than drawing the resident into the carers’ reality. A colleague in this same group, concedes manoeuvring or bending the truth in an effort to ‘get them back to some form of reality’. She said in the group: B5: ..Sometimes you have to manoeuvre the truth around a little bit, just to fit the circumstances, you know, because you are going to increase their anxiety. (Y)ou more or less come around .. You go to ‘em and say: “How long is it since you’ve seen Grandad? Or you bring that into the conversation and they start thinking, some of them do, even with dementia, "Oh I haven't seen him for a long time. He could be dead", so you get them back to some form of reality. .. AT: Are you saying this in the context of those with dementia or .. B5: Even those without dementia, some form of loss of memory – short term memory or long term. Its not all dementia. It’s just loss of memory isn’t it?
Within this carer group, to be kind to residents with dementia, old age, memory loss (short or long term) and with ‘everything against them’ (B4) requires a twist, a bend that manoeuvres the truth. The personal carer’s (B5) concluding remark places the strategy for bringing ‘them back to some form of reality’ as appropriate for residents with dementia, short or long term memory loss. This personal carer’s proposition is to orientate the resident to reality. Adding to erroneous perceptions about dementia care (and telling the truth) a personal carer writing in response to Nurse’s Story – Caring for a woman who had Alzheimer’s, concluded: D1: DE:..Playing with a person’s head who has dementia is one of the lowest forms of abuse I can think of. I have seen a case where a resident has asked a nurse where the bus stop is because he/she is going to catch the bus and go home. Instead of ‘diverting’ the Resident onto another thought track, the nurse has told the Resident that the bus stop is just outside ..(T)he Resident can be sitting there waiting for a ‘non existing’ bus, but is now out of the way and not pestering the nurse. Eventually another nurse will find the Resident..and gently guide the resident inside and ‘divert’ their attention onto another activity. To me that is a lie and anyone who derives pleasure from this form of ‘abuse’ should not be in a Nursing Home or have any employment where they are in contact with other people.
This commentary in the carer’s journal stands in contrast to an ‘understanding of dementia’ (CAH) in which the nurses perceive their actions as ‘not out and out lying’ (CAS) since ‘lie isn’t going to hurt’ but rather ‘colouring the truth (as) beneficial’ (CAS) to the demented resident. Likewise this personal carer’s understanding is in contrast to an understanding that with dementia residents, the carer ‘play(s) along’ (C2) in the resident’s reality – ‘tell lies for (resident’s) benefit’ (C3) and that a carer ought to ‘validate with them’ since ‘what is in (the resident’s) mind is real’ so that carers ‘stretch the truth in a nice way’ (D3). Finally, there was a perception demented ‘people’ are considered unable to ‘understand’ so that: ANL: (ii): (I)f they’re not able to comprehend, even in lying they (demented persons) wouldn’t even understand what you’re saying. You could tell them the sky’s blue. Whatever the conversation, your answer’s not relevant because they don’t even understand it, those demented people don’t.
As a consequence, the care provider that holds to this understanding regarding dementia and truth-telling will act so as to say whatever they – the care provider, likes. Demented people are considered incapable of understanding fact or fiction.
7.3.3
Death disclosure
At the E aged care facility, the nurses spontaneously and collectively spoke about the disclosure of death and dying as a means to articulate their views and experiences about truth-telling. They conceded as problematic the use of euphemisms or unclear expression about a residents dying. A nurse expressed her view that the medical officer was the ‘health care worker with the biggest problem about truth-telling’: EPO: They have problems expressing clearly that someone is dying. What we as registered nurses know, is the truth is not told to the family so they are left with a false impression, a false hope.
Yet, a nurse elsewhere revealed telling the ‘bad news’ of a resident’s condition to relatives: CAH: (ii): ..I would never, unless I was asked outright ‘Am, I going to die?’…I would never actually say ‘I think Mum is dying”. I couldn’t do that.
Nor would this nurse use the language of ‘dying’ when instructing the personal carers: CAH: (ii): (I)f somebody is dying, again I wouldn’t use that word, but I will get them (carers) to do things and they will start to realise just how near to death somebody is…
The researcher suggested to the E group that: AT: You say you ‘soften the truth’. In your view the medical officer does not disclose the truth about death and dying and the family is left with a ‘false impression’. How do you respond to my view that the medical officer is also ‘softening the truth’, and it is this that risks the family getting a ‘false impression’?
The nurses agreed that this was possibly the case. Both the nurse and the medical officer ‘soften the truth’ in the context of death and dying and in so doing, risk editing the truth in such a way that the family fail to comprehend the reality of their relative’s care circumstance. Disclosure about death and dying is made difficult because personal carers consider the impossibility of telling an uncertainty. The researcher asked ‘So what is the exact truth?’: C3: The full facts…What you know in your heart… C2: If somebody has got cancer…how can you tell them the truth when they are going to die or how they are going to die, you can’t. You have to tell them facts. You have got cancer, it’s terminal…
Their reflection on the cancer diagnosis revealed an understanding about the nature of disclosure. A distinction is made between ‘exact truth’ and some other ‘truth’. Full facts are the ‘exact truth’ such as the diagnosis of cancer. What can be disclosed is the exact or absolute truth – diagnostic truth. The prognostic truth – an uncertain or imperfect truth, as it relates to the pronouncement of death and attempts to announce the process of dying, ‘can’t’ be known and therefore ‘can’t’ be disclosed. This tension between disclosure of absolutes and uncertainty - that is, a tension between the disclosure of diagnostic truth and death/dying (prognostic truth), finds additional elaboration: CPJ: I mean some of the residents, you would never say: “Well, you are dying now… .. CAS: You skip around it sort of thing. CAS: Well I suppose if a resident says to you “I am going to die aren’t I”, you can just say to them “You know we are all going to die, but we don’t know when”… AT: Is that what you say to them? CAS: Yes, I do. Because I don’t know when a person is going to die. As I said it is out of our hands, and that’s what I am saying, you know we have got no control over when they are going to die as such…On most occasions that has appeased them, sort of calms them down.
The idea that a resident’s death is an uncertainty, unknown as an absolute, accords with C2 C3 ‘imperfect truth’. Furthermore, about disclosing details about death, the personal carers below acknowledge that the teller, in this case the relative, is less than candid in an effort to avoid their own emotional distress: D3: Because people do, they go in and they cover it (dying) up and they say “Oh no, you’ll be right. You’re just sick now, but tomorrow you’ll be better”. And often they’re not, tomorrow they’re worse. .. D1: Denying – they don’t want to loose their loved ones. If they do tell them the truth, “Yes you are dying”. They don’t know what that person’s reaction is going to be. Can they handle?…Often its the person who is saying… AT: The sayer? Can the sayer handle… D1: That’s right. D3: Yes D1: Can they handle this interaction that’s going to come from telling that truth as (D3) said?
The carers recognise that the family’s denial is a deception – that is, a falsehood constructed with the use of statements about the temporary nature of the care circumstance, as something that will pass that, in truth, will not pass. The family is considered to be in death denial for two reasons. There is an uncertainty about the emotional outpouring by the resident and secondly, there is an uncertainty about their own emotions surrounding death. Yet, amidst the tension that some care providers experience in disclosing death as an uncertainty, a nurse (team leader)
recalled ‘an example as to what ..happened in (a) particular situation: ANL: (ii): We do tell them the truth. You have to. One particular lady said to me “Am I dying?” “Yes”. And she said, “Oh, nobody’s ever told me”, “Well, what did they tell you?” “Oh, you’re sort of sick, very sick”, And I said, “Well, you’re not going to get better. Of course you’re not going to get better”. “What’s going to happen?” “I don’t know” “What do you mean?” “I don’t know. There’s only two things I can promise you” – which I did promise her. She’ll have no pain..I’ll make sure she doesn’t, she’ll be looked after. And she won’t die alone…
Her capacity for frankness about the resident’s death (dying) was understood by a D nurse manager: DJJ:…And I know when I used to work for people that were dying and they say you know, “Am I going to live or am I going to die?” I sort of figured if you say, “Oh no you are going to be all right you, are going to get well.” But that was a hope you couldn’t offer them. You were best to explore the possibilities of death rather than, you know, being the long shot of the fact that they were going to somehow have a miracle cure.
The nurse manager reflects on truth-telling in practice in a context defined by a palliative care philosophy. That is, both care worker and ‘people that were dying’ existed in a relationship, and the care provider operated in her role, delimited by death/dying. Despite care providers’ perceptions about uncertainty about death disclosure, the E group articulated how the announcement of death could and would be made in their care circumstance. The E nurses’ group discussed informing a resident’s relative of the resident’s death-dying over the telephone: ELQ: I’d ask who I was speaking with, and whether anyone else was at home. I’d want someone at home to comfort that person. AT: How do you tell the person at home the news that their relative has died if they are alone? ELQ: I would say the same thing…that your Father or whoever had deteriorated and that they had died.
This view was partly shared amongst the group members. Other nurses in the group expressed the view that they would not use that ‘turn of phrase’ – ‘had died’. Rather, they would use the phrase ‘deterioration’ or ‘rapid change in the person’s health’. This language for death disclosure was complemented in CAS’ interview in which she would say ‘Dad’s condition has declined quite rapidly and at this stage it has continued…and eventually he may pass on’, rather than ‘Look, your father’s dying’, or ‘Dad’s dying’. The language - ‘deterioration’ or ‘rapid change in the person’s health’, for the disclosure of death over the telephone is premised on the nurses’ view that: EPO: It is better to get the family to the nursing home… EPD: Hmmm…
EPO: …to tell them about the death, in person…it’s more personal, warm.. EPD: I wouldn’t tell them over the phone.. TbsPO: No, you avoid that and you get them into the nursing home before you tell them their relative has died.
Additionally, the language ‘colour(s) it a little: CAS: (ii): …I just don’t want them to upset them..To sort of hit them with the impact that Dad’s going to die, flat out – does sort of, may seem a bit harsh. If you, sort of as I say, colour it a little, they do tend to accept it a lot easier.
Therefore, the use of euphemisms to describe death is considered appropriate. The appropriateness of the euphemism is premised on the care provider’s role characteristic. That is, the caring role aims to comfort (to be ‘personal, warm’). The E group also spoke about disclosing the death of a resident to a relative in the context of the resident’s relatives’ involvement in the resident’s care circumstance. In particular they agreed amongst themselves that a nurse is able to ‘more freely, more openly’ disclose about death and dying to those family members who had had involvement with the resident (relative). The general view was this capacity for more openness was as a consequence of the family member(s) expectation and awareness of the (now-person) resident’s dying and death (see also the previous section: Relationship, for further description of being ‘free-er’ with resident’s relative). In contrast, the nurses agreed that openness and speaking more freely about a resident’s death was restricted in the case of those relatives with less involvement with the resident in care. The resident’s death would not be disclosed over the telephone. One of the nurses in the E group reiterated this in her Personal Journal: EPD: DE: I won’t always tell family over the phone that their family member has died suddenly. If they are expecting their family member to die it’s a different kettle of fish. I prefer to ring and say she/he is dying and if they can come as soon as possible. I feel it helps them get over the initial shock. I will then be there to break the news when they arrive and comfort them. To me it’s a more humane way of telling relatives.
As a comforter, the nurse perceives her responsibility is the delaying of death disclosure. When a family is not expecting a death to occur, as a strategy to maximise care as comfort, rather than telling the family member over the telephone the nurse says that the resident is ‘dying’ so that the pronouncement of death can occur when the family arrive at the nursing home. With some concerns about and hesitancy toward death disclosure, the personal cares at D understand the consequences of openly acknowledging death:
D3: …I had a resident who was dying and she said to me “Am I dying?”… she was nearly dead, and I went in and was seeing to her and she was clutching at me. She was saying “I’m going to die, I’m going to die aren’t I?” AT: Yes D3: And so I said “Yes you are going to die. It’s time to go to God now, He’s waiting for you”. And she just lent back on the pillow as if “OK, I’m allowed to go”. She was relieved…
Death disclosure is perceived by the carer as having a positive effect on the resident. Her frank response to the resident’s question, ‘Am I dying?’ eases the resident, giving the resident calmness - a freedom from her distress in dying. The personal carer added: D3: We had a person die this morning where the family just sat there and stroked her hand, and then she went and everyone cried but they’d said goodbye… and they had accepted Mum was going to die. They asked us and we said, “Look, she hasn’t got long to go. Go and make your peace with her”.
Whilst acknowledging death and telling someone they are to die are considered ‘painful’, an open (though euphemistic) acknowledgment to the family of their relative’s impending death allows for final goodbyes, the comforting of the dying and a preparedness for and acceptance of the inevitable. The group continued: D3: People often don’t say “You’re dying” because they themselves don’t want to lose that person.. and unfortunately they don’t say their goodbyes and that person gets so ill overnight and dies and then that person’s then regretting never saying goodbye….
Death denial prevents the family from farewelling their dying relative, expressing emotions and bringing the relationship to a close. The carer’s perceptions about the consequence of open discussion about death and dying concur with the ideas of residents who demand frankness about terminal illness and/or death, so that the resident can get their affairs into order and say their goodbyes. Finally, the nurse manager below offers a solution to counter the use of euphemisms or unclear discussions about death with residents. CPJ: Again it (death disclosure) depends on the relationship, because I had a resident here that asked me if he was going to die, and I said to him, “Well do you want me to tell you the truth?” And he said, “Yes” and I said, “Yes”. And then he said, “Good. I am glad someone has told me”. …So he really wanted to talk, much talk about, but he knew he was dying, he knew.
This nurse reveals the antithesis of the care provider ‘gauging’ or ‘judging’ what is generally in the best interests of the resident. Rather than making assumptions premised on paternalistic benevolence, the nurse engages with the resident and asks, ‘Do you want me to tell you the truth?’ Disclosing the truth allows the resident to discuss further the issue(s) important to him in the current care circumstance. The openness allows for the resident to determine the conversation’s agenda.
7.3.4
Dementia truth: Resident’s perceptions
Whilst it is unreasonable to expect a non-care provider (resident) to have an appropriate level of understanding of the care of a dementia resident/patient, a resident’s insights nevertheless do add to understanding how others perceive dementia relates to truth-telling. A resident suggested Alzheimer’s disease makes truth-telling ‘different’ (C4r): C4r: I think you should tell the truth but in some cases the resident cannot accept the truth because they haven’t got it up here to accept it. C3r: But I’d like to know the truth. C5r: Most people though would.
This understanding - that a dementing illness diminishes an individual’s capacity to understand, and therefore truthful disclosure becomes an oxymoron, holds because: A2r: Say they suffer from dementia or something like that..There is no need to tell them. They wouldn’t understand.
This view, that Alzheimer’s disease is more important than truth-telling, initiated a group discussion based on a resident’s understanding of truth-telling in the context of the Nurse’s Story – Caring for a woman who had Alzheimer’s disease: C5r: I think they (carers/nurses) should tell the truth. I think they (carers/nurses), sometimes there are issue they avoid a bit. AT: ..So, say that again? C5r: I said they should tell the truth all of the time. In a case like that (patient with Alzheimer’s disease) there are issues…and have a bit of liberty about that. .. AT: So you actually said she should have a little bit of liberty … what do you mean? C5r: Well just that, a bit, the truth they cover up..Tell half the truth sort of thing, you know.
This concurs with the understanding that a resident’s capacity to understand forfeits truth-telling. Whilst the resident holds that ‘they should tell the truth’ in the case of Alzheimer’s disease ‘half-truths’ as ‘bits’ of the truth ‘covere(ed) up’ are reasonable. In the context of dementia care, the care provider’s understanding of truth-telling in layers in practice emerged: C2r: I have always thought all the truth, but I think in any case you look at, the patient must have priority in the last say. Like what is best for the patient. AT: OK so your position is ‘always the truth’ and the patient or resident must have the ‘last say’? C2r: Yes, Well you judge the condition of the patient whether they work. They are capable of coping with the whole truth and I think the patient’s interests are at heart first and foremost in every case. You’ve got to take into consideration what is best for that and if she hasn’t had the.. tell the truth all along..to weave it into everyday life so subtlety that they don’t know what is happening and gradually you talk about it more..and gradually they…
Whilst an ideal position is ‘all the truth’ as a governing rule, circumstances exist in which a clinical judgement may mean presenting the truth over time. In the case of a patient with Alzheimer’s disease, a care provider can disclose as a result of an estimation of the patient’s best interest and capacity to cope with the truth. The priority of this assessment must only ever be the good of the patient. Consistent with B5’s misunderstanding in the context of disclosure to a resident (patient) with Alzheimer’s disease, the resident does however concur with the care provider’s view that they ‘gauge’ or ‘judge’ what is best for the resident. Additionally, this resident’s understanding is consistent with the view that the truth can be revealed in layers – truth-telling as stratal, over time. 7.3.5
Death disclosure: Resident’s perceptions
A resident questions why discussion about death and dying in residential aged care is necessary. The resident’s saying “No you don’t, do you?”, aimed to emphasis to the researcher that in her opinion such discussion was not necessary: B1r: But, I mean, you don’t go around trying to discuss death with people in places like this, do you?. No you don’t, do you? On the other hand they are just the opposite here, they always sort of cheering you up.
The resident recognises that ‘there is no conversation about deaths…’ in the residential aged care context but rather, the emphasis is on ‘cheering’ the residents. At D, a personal carer concurred: AT: (ii): In your view is there open discussion about death and dying? D2: We have..not really AT: Not really.. D2: But we do have a group coming here at the home (aged care facility) we have the palliative care, I’ve actually put my name down for..
At interview, the B1r’s original views about the emphasis on ‘cheering..up’ and B3r’s ‘protecting the (residents)’ from ‘talk about death’ were re-visited: B1r: If…someone I don’t see for a little while and I have this idea their frailty’s getting worse, I’m tempted to say ‘What’s happened to Mrs so-and-so?…And somebody could be shying from answering it. ‘Did she pass away’, I usually say… AT: …Why do you think they’ve (care provider) shied away from (answering)? B1r: Well, maybe they don’t like talking about death. I mean there’s lots of people like that. …(Y)ou find not many people like discussing death unless they’re religious bodies.
Death discussion causes discomfort. Openness about death is not only problematic for the care providers but is also not necessarily ‘liked’ by ‘lots of people’. Telling another about their dying and death has, at least in this study at D, become identified as requiring a specialist approach by the care providers under the banner of ‘palliative’ care. B2r was also asked at interview to comment about B1r’s views that the cheerful care provider rarely gets into conversations about death and dying with the resident. B2r concurred, adding: B2r: (ii): …They’re not trying to sort it out with you, they look towards the family…and they tend to relate to the family rather than to you in these sorts of things..
This resident was not critical of conversations with her family rather than with herself about ‘these sorts of things’. ‘Sort(ing) it out’ without her was not an issue since in this case the resident had only ‘one daughter’ who was well aware of the resident’s requirements and: B2r: (ii): …If she did have a different attitude to mine, I’d think I’d ask her to consider my attitude as the important thing (when) she went to the carers and talked to them…
What resides here as important in the exchange of information is an insight into and regard for the wishes of the resident. The lack of universal openness ‘about deaths’ is understood as the carers ‘protecting’ the residents. Data reveal that residents recognise and accept that they will die, care providers describe the residency as a place for ‘waiting to go up to St. Peter’, the carers describe the residents as having an unspoken insight (closed awareness) and carers are limited in what they can say to residents. Overriding openness for the purpose of protection about death creates a mutual pretence. Furthermore, care providers need to determine early in a resident’s care if discussion about death and dying is deemed suitable, and to keep assessing this over the duration of residency. The disclosure to another that they are dying or will die requires careful consideration since it potentially may upset the person: AT: What do you think D1r (about death disclosure)? D1r: I think it’d be a hard thing to do to ‘em .. D2r: I nursed my Grandfather. He was 99; and I nursed my two grandmothers; and I told them and they were all happy about it. They all knew what was going to happen, and we were taught you know not to be frightened of dying and that helped them a lot. ..
AT: You said D1r, that telling someone that they are going to die, that it would be hard to tell them… D1r: I couldn't. I'd be thinking upsetting them
However, one of the residents reveals how the death disclosure is made possible, without fear. Paradoxically, the potential ‘upset’ and fear of dying and discussion around it is reduced by discussing death. Rather than remain silent about death and dying, discussion provides ‘help’. Furthermore, an ambivalence was evident within the tension between the resident’s public and private disclosure preference. The resident (C3r) reflected in her Personal journal about the personal experience (and consequence) of disclosing to her husband his imminent death: C3r: DE: ….He then had a massive heart attack, so that was it, which I feel was a good thing as he did no have to suffer and just lie there and think about it. I still don’t know if it is wise to tell people they are departing this world as I feel they are not fools and know what is going on.
The resident does understand that individuals have an awareness of their dying and approaching death. This view - that one can be aware without disclosure agrees with the care providers. The resident also expresses an ambivalence about death disclosure. This ambivalence was evidenced in the interview where the resident confirmed: C3r: (ii): Well, I still don’t know if it’s right, whether they should be told or not. AT: What’s your concern C3r: Well, how it affects them. They go downhill straight away. That’s the end of it, isn’t it?
This ambivalence highlights a core proposal in this study and that is that personal carers and nurses need to actively determine amongst the resident group the requirement for open discussion about death and dying. Confirming those views expressed by the D personal carers’ group a resident proposed that judgements about disclosure and therefore the rationale behind protection in the context of death disclosure was: B2r: Turning to this (death disclosure), sort of, kind of way we're often just looking after our own feelings, not their feelings - with feelings we assume they will have rather than feelings they do have. AT: B2r, you say, that I might come from this position where I am protecting my own feelings rather another’s and I make an assumption about the feelings that someone else might have….I say that I am trying to protect you from hurtful truth and you are picking up on this idea that I am protecting myself. B2r: Yes, in that sense, faced with death you have to put it in those terms.
The resident considers in the context of death disclosure, the reluctance to disclose and speak about death and dying stems from another’s protecting her/his own feelings rather than those feelings of the person dying. She considers assumptions about how a person who is dying and facing death feels are based on transferred feelings rather than an insight into the true feelings of the person dying. A further position shared by the residents here (and care providers generally) points to a contradiction in understanding: B1r: Well I have had occasions where people have rung me up on the phone and said: "Well, how am I doing today?" And you have to be very careful how you answer them as a rule. You can upset them with out meaning to really. I think most people who get phone calls avoid the issue if they can possible do that. B2r: Hmm. Hmm. (Yes) B1r: And you have to be really careful, so that I suppose in some cases you would have to avoid the issue and you will be in that case not telling them that this person was dying. Very difficult really.
The contradiction emerges, since previously these residents expressed their rejection of protection - having an expectation for ‘truthfulness’ and a desire not ‘to be protected from the truth’. Previously, B2r recommended that a ‘truthful relationship’ is possible by communicating in a way that is sensitive to how it is said and the way it is said. What is apparent in this conversation is a sharing of the care provider consensus that some can decide the best interest for another but the some would not wish that applied by the other to them. Residents’ awareness of death and dying was focal in the research interviews: C4r: You know you are going to die sometime, don’t you? AT: Me personally…er, yes… C4r: Everybody, you know you are going to die. Well my doctor just sat on the bed – Sister was there, and he said: “There is nothing else I can do for you”. And that was that.
Using the Nurses’ Story: Relative of a patient rings up, at the commencement of one interview, the resident participant immediately began: E1r: The only thought I have about that is that I realise that I’ve come to the end of (the) road..I know I’m going to die
Another resident expressed her view: D2r: … I did (speak openly) with my daughter a few months ago she was very sick and I told her not to worry and not to be frightened because where she was going would be good for her and she was all right afterward. AT: And … you have an expectation that you will be treated in a similar way? D2r: Yes…I've accepted that in myself. I realise I gotta go one day. I don't mind how I go, as long as it’s happy. I’ve had so many deaths in my family…I've already lost a grandson, son, daughter-in-law and my husband.
Residents recognise that life is finite and generally they are accepting of death. Some residents express views that suggest discussion about death and dying is ‘hard’ (D1r) and contrary to the perceived role understanding - residential aged care facility’s staff’s ‘cheerful’ temperament (B1r). Although death disclosure may be ‘hard’ and contrary to a cheerful disposition, it is a part of aged care conceived of as a ‘waiting house’. Therefore, residents suggest ‘It’s in the way that you say it’: D2r: A lot depends on how you tell them (they are dying). There's a way of telling people things. It makes them feel good and there's a way of telling them that makes them feel sad.
In the context of death and dying, the resident expresses a view that disclosure is possible as a part of the helping experience. Open awareness is achievable through telling another about their dying in a particular way. D2r: My understanding of truth-telling is you make yourself feel better and you make the person you're talking to feel better. .. D2r: If somebody is very sick and the Doctor tells you they are going to die, you're better to tell that person. I feel that person should know.. .. D2r: ..and you can talk to them so they don't worry and you can explain to them, help them not to worry. .. D2r: You still make their life pleasant .. D2r: … it should make them feel better, because they know that you're in their interest.
The resident understands that truth-telling is beneficial to both the speaker and the receiver. Being open allows and includes revealing what is known and spending time with another. Through telling the truth the other person’s concern is eased. The disclosure benefits the receiver as it makes them feel better in the face of death disclosure as the openness reveals the speaker’s ‘interest’ in the other. The resident’s insight is that the speaker reveals to the other that ‘I am ‘interest(ed)’ in you - your well being and your finality’. 7.4
Discussion: Residency
7.4.1
Home away from home
Residency as the ‘Home Away from Home’, exists as a potentially chaotic, challenging and confronting place. In the ‘home’, situations arise that are threatening as a consequence of the resident’s behaviours. Care providers in this study describe
some residents’ behaviours as violent (‘punch’, ‘kick’, ‘bash’, ‘spat’, ‘beserk and flies off’, ‘scream and shout’) and the reality that others are ‘difficult and dangerous’. In this context, there is a risk of injury to staff, the resident and other residents. Care providers decide if, how, and when these behaviours will be disclosed to the family but also describe situations demanding types of deception for benevolent medication (the non-disclosure of behaviours and use of deception for administering medication is discussed later in this section). In this study, nurses are contested by the family for control over the resident’s best interests. Information is delicately managed to keep the family ‘on side’ and to avoid ‘litigation’. Furthermore, the perception exists that some residents’ families are ‘dysfunctional’ – described as prepared to ‘blast’, ‘battle’ and ‘attack’ the nurse. Residents who want to go home cause the personal carer to tell ‘white lies’ or utilise mental reservation premised on a role understood to promote good and avoid harm. Residents enter into mutual pretence with personal carers as they struggle for an existence with a semblance of control, in an otherwise task orientated and care circumstance predetermined by others. Poignantly portrayed in a single journal entry and complementing various data sources and care provider voices, a personal carer reviewed residency as overtly task orientated and time starved, emphasising ward orderliness, staff rather than residents’ autonomy, a place with no time for engagement with residents who risk being categorised as a burden. Personal carers propose that they appreciate fully the reality that is the residential aged care facility – the nursing home. As a consequence of a work ‘hardened’ perspective from years of experience, this reality in their view is, for those outside the context, personally confronting and visually unpleasant. Personal carers need to be aware that getting ‘a bit hardened’ to the ‘reality’ of ‘nursing home’ risks knowing the emotions of the resident and resident’s family as they enter and adjust to living within the ‘Home away from home’. The personal carers’ reflection on the seemingly sometimes rapid but otherwise gradual deterioration caused by aging over which there is little control is that it is ‘frightening’ (more so for the personal carer who does know what it is like in aged care). Whilst some personal carers articulate the importance of their role as
maintaining for their residents a quality of life, other personal carers question the very existence of any quality. A two part argument is proposed from out of this imagery (at least from the personal carers’ perspective). Firstly, benevolent parentalism/paternalism is a reason for the act of protection that promotes the ‘vision splendid’. Secondly, protection is also a mechanism for the personal carers to avoid confronting their own mortality, their own ageing and the ‘things (they) see’ such as the rapid deterioration of one’s faculties and loss of control of one’s life that finishes with self control being taken over by another. The aged care facility’s social world was portrayed by a resident as a lonely place – a place with little social interaction in which, comforted by the television and her books, she waits to die. Conversely, a resident’s individual preferences may be diminished to a collective whole – therefore, forcing participation in social activities deemed useful for all. In this social world that is the care facility, there exists a social order of well defined caring roles and behavioural expectations. The good residents rarely interfere with the wards social order and ‘do as (they) are told’. A good resident follows orders. It has previously been proposed that the work of the care provider, namely caring, is underpinned by a relational (knowing) ethic (see Chapter 5: Relationship). In addition to that the residential aged care facility is perceived to be ethically challenging with dilemmas underpinned by a situational ethic. That is, in the context of truth-telling, care providers reflect on the circumstance. The circumstance comprises the exact nature of the situation (eg death disclosure) and the agents and relationship involved. The situational-relational ethic is applied to residents and resident’s family equally. Seen in this light, the guiding ‘rules’ or ‘theory’ for truthtelling are determined by the residency – the situations and persons involved in it. Furthermore, role analysis concludes that care providers ‘stretch the truth’ to promote happiness, comfort and above all, avoid harm and protect residents from it. In this analysis of residency, it is clear that the care circumstance is temporal. As such, the ‘nursing home’ that fosters timely, open – that is, truthful communication must be time-rich rather than time-poor. The residency described as time-starved greatly reduces the time (availability) for telling the truth and greatly increases the probability that managing the telling (of the truth) is a time management necessity,
rather than just a genuine therapeutic strategy. That is, omit the detail - save time. With limited time, there is limited talking. With limited time, there is reduced capacity for knowing the resident and family which is fundamental in the care providers understanding of truth-telling. It has been established (see Chapter 5: Relationship) that amongst care providers the understanding and meaning of truth-telling has a strong grounding in the concept of knowing. Knowing is temporal. That is, knowing takes time and is a function of how much time a personal carer or nurse spends with a person. Time is scarce. The allocated care time is a depleted resource that is inadequately distributed. There is neither enough task time nor is their time allocated for being with the resident. With the priority care tasks or the doing, there is no time for being with a resident, to interact with in conversation, to understand more fully or to know or learn about the resident. An additional perspective that supports the proposition that adequate knowing and subsequent judgements about truth-telling in practice are risky was that offered by nurses in the E group. This group spoke about the frequency and duration or time of stay. The nurses discussed the ‘changing face’ of the type of resident and the nature of the resident in nursing homes. In the past they claimed that residents ‘stayed for 4 or 5 or 6 years’. This was considered a long duration. In these contemporary times, residents are discharged from hospitals at the terminal stage of their lives or the terminal stage of their illness. Consequently the ‘residents are spending less time’ in the aged care facility and the nurses are unable to get to ‘know them and establish the rapport’ as in the past. Time is perceived to be limited with an increasing workload. Effective communication is contingent upon time. Effective communication that engages the resident and family in a spirit of openness brings to the care relationship a (an additional) ‘burden of care’. Frank communication adds to the ‘burden of care’ in a context already time depleted and understaffed. A care context of limited and little time with a doing or task focus, would not claim to desire nor is capable of, absorbing an additional care burden without adding to nursing staff turnover. Consequently, the management of information becomes a strategy for time management.
A resident understands the ‘Home away from Home’ as a busy space in which social, superficial talk occurs in short time frames associated with the daily routine of care (meeting tasks). The resident’s sense of the aged care facility is akin to the warehouse model of long term care with an emphasis on the technical aspects of care. A resident spoke about the impact that the busy work environment has on the care provider’s (nurse’s) opportunity to think about and reflect on what they are doing. Within her narrative she revealed her concern for the quality of care. Additionally, the aged care facility was perceived to be short staffed. In a care environment that is time starved, task loaded and short of staff, the care providers cannot attend to the resident’s needs immediately. Just as the residency is temporal so too care providers in this study conclusively understand that the residents in the aged care facility are in transit. Residency, as a dormitory for dying, houses the resident during their dying. Whilst care providers understand this to be so, some suggest that this does not bear on their work. The residency as ‘Home away from Home’, whilst recognised as a dormitory for dying, is also described as a place of awareness. The aware resident not only has insight into the telling of untruths by some, but also the burden of care carried by the personal carer. A personal carer experienced interactions with the resident in which the unspoken truth – the ‘something’ important for the resident to know but not yet revealed, is disclosed as a consequence of the resident’s awareness. The resident recognises that the personal carer’s know, but have yet to disclose, what the resident ought to know and therefore asks for discussion. Premised on knowing the resident, the care provider assesses if the resident wants to know and if the resident is ready to know the truth. That is, wants disclosure. However, both personal carer (and to some extent the nurse) and residents in this study support the view that the resident has an awareness – about bad news, about their health, and more importantly about what is or is not disclosed. That this resident’s awareness is strongly felt by the personal carer, is consistent with the daily hands-on contact as part of the carer’s role. This awareness is identifiable as suspicious awareness or mutual pretence. Additionally, family members who are not deemed to be in denial, and who are only ever made aware of the ‘vision splendid’ through benevolent protection are also privy to mutual pretence.
In the case of the resident’s awareness there emerges a paradox. Care providers know the resident is aware, that is, knows. The residents’ data in this study reveal that they underscore this awareness and they also observe in cases ‘quiet conversations’. However, personal carers (and nurses) speak about making assessments about a resident’s willingness and preparedness for truth disclosure. A further proposition by the researcher is that the personal carer (and nurse) are self deceiving when making assessments about willingness (wants to know) and preparedness (ready to know) when at the same time they and the resident acknowledge that the resident already knows. Care providers either accept or deny that residents know (sense) the personal carers’ editing, tailoring or omitting the truth, yet personal carers (at least) perceive such activity does not go unnoticed (is sensed) by the resident when practiced by family or some ‘other’. Generally, residents’ data reveal that the resident wants to know, wants openness about their health and death or bad news. Care providers who make judgements otherwise are in error. In a critical moment of death, personal carers describe a resident awareness as universal. That is, the knowledge that one is dying and will die is known by the resident just as it is to be known by all of us. This awareness of dying is both a cognitive process and a visceral one. Defying the personal carer’s views that residents are aware and that they generally want openness about dying, a nurse manager described a case in which a range of euphemisms were employed and a ‘quiet conversation’ was had outside a resident’s room. In the room of a competent resident, whose death may have been imminent, the nurse converses with the resident and relative using euphemisms about death but also takes the resident’s relative outside the resident’s room for an additional ‘quiet conversation’. Discussion and openness about death or dying with the resident is forgone. Some residents in this study confirm through their experiences that ‘quiet conversations’ are a part of their care circumstance. Personal carers have a view that the resident, aware of untruths, is directed by the personal carer to discuss suspicions with the nurse. This, coupled with the practice of ‘quiet conversations’ (C3r) and truth-telling in the guise of a euphemism lends support to the possibility of getting ‘the run around’ (D1). What reveals itself through these care providers’ insight is the existence in residency of both a suspicious awareness and an awareness based on mutual pretence.
Within the interaction between a personal carer and a resident’s relative in which the latter believes he is ‘getting the run around’, the conditions arise in which suspicion is reinforced by the communicative combat both he and the personal carer engage in. The communicative game playing does little to reduce the suspicions. Potentially, the relationship risks mutual pretence. Residents reveal that families decide not to tell. Quiet conversations are observed in corridors amongst families and staff, the consequence of which is that the residents become suspicious about what is not being disclosed to them. The residents’ awareness of their care circumstance is also due in part to what the residents feel within themselves. This suspicious awareness stems from observing quiet conversations outside their rooms and also the resident’s ‘know(ing) there must be…’ something wrong with them. What the residents know within themselves is that which is spoken about quietly and kept from the resident in an effort not to harm the resident from that which they already know. However, the resident discounts the perception that telling the truth can be harmful. The resident discussion group that spoke about the discovery of an undisclosed truth underscores for them the greater hurt from an awareness shift of this kind. The group held to the view that a greater harm is done when a situation arises in which an awareness shift occurs that reveals the family’s non-disclosure. The ‘hurt’ of the discovery that a resident has not been told something is considered to be great. The resident is ‘hurt’ but also, adding to the harm, is the greater burden the family must endure as it explains the reason for the non-disclosure. An awareness shift of this kind impacts on any resident trust and confidence. The resident’s awareness also extends into having an insight into the trustworthiness of the staff. Data reveal the view from both the carer and the resident, the latter is able to determine during their residency, staff (care providers) who are genuinely able to care for and care about the resident. This awareness adds to the resident’s insight about who is honest and therefore trustworthy amongst the care providers. Residents want honest and trustworthy care providers who will meet the residents’ preference for openness. Residents reject the notion that disclosing the truth about their care circumstance is detrimental to their well-being. On the contrary, they seek to ‘know the truth’ in order to be self determining, so that suspicions are confirmed
and ‘wonder and worry’ quashed. As a resident indicated, she was ‘glad’ to have had the disclosure by her doctor about her chronic, deteriorating condition. 7.4.2
Daily reality
Truth-telling in practice means telling so as to ‘ease’ and to do so means to ‘omit’ parts of the truth. Truth-telling in practice conceptualises truth as comprised of the truth-disclosed and the truth-omitted. The truth-omitted is understood as the harmful-truth which is that information deemed by the care provider to be upsetting or distressing to the resident or resident’s relative. The truth-omitted amounts to what nurses’ determine an other ‘does not need to know’. For the resident’s family, they are not told about behaviours or changes that have no impact on the resident’s care plan. Truth-telling in practice is a function of time. Therefore, what truth is disclosed and what truth is omitted is dependent on the time during which the care provider makes judgements, ‘gauges’ whether or not the resident or relative can ‘handle it’. That is, the truth disclosed and the truth omitted is determined as a result of care provider assessments about resident’s and relative’s cognition, mood and psychological status and how these might impact on coping with open disclosure. A number of additional comments can be made about these conclusions. Truthtelling in practice, so described, emphasises the effect ahead of the cause. Nurses place priority on the consequence of their actions in their understanding of truthtelling. The important task is to maintain an easeful state, the ‘gentle’ calm and to guide and protect residents and relatives from dis-ease. Conceptualised as described, truth-telling in practice contained in a residency in which ‘everybody’s reality (is) bloody different’ (DNB) and understanding that truth is transitional and a nurse’s response to ‘You didn’t tell me the truth’ as ‘(I did but) not on that bit’ (DJJ) indicates erroneous judgements and points to truth as equivocal. Furthermore the truth omitted - harmful truth, means that over time, assessments of a resident’s capacity to ‘handle it’ will favour truth omission rather than truth disclosure. That is, since the ageing of the resident will diminish the likelihood of care provider judgements that support improved cognition or psychological integrity, truth-telling in practice will be premised on benevolent protection.
Taking this predisposition to favour truth omission on the basis of an increasing inability to cope, also over time there is the likelihood of death of the resident. Data suggest that nurses and personal carers (and family) accept death as a care outcome. Therefore, a chronic state for residents becomes suspicious awareness or mutual pretence born out of silence. Nurses (and personal carers) not only risk getting the ‘gauging’ wrong, but getting it right too late. Truth-telling in practice accepts the afore-mentioned temporality of truth-telling. Truth-telling in practice changes over time. Since truth-telling in practice is partial, edited truth, it also gradually shifts toward whole-story-truth. That is, a nurse understood truth omission as ‘not not telling the truth’ but as ‘failing to mention all of the truth’ (DNB). It has previously been proposed and discussed that certain factors bear on care providers’ claims for making determinations about another’s best interests and therefore knowing another’s desires for information. This central argument is supported by the view (see nurse ANL) that cautions the care providers against assuming what another (namely, the resident but also the resident’s family) needs to know or does not need to know. An added insight is worthy of mention in the interchange about not telling the ‘full story’, where the resident’s spouse says: ‘You are not going to send him away are you?’ The nurse manager (DJJ) utilises ‘mental reservation’, the unspoken thought: ‘…but there is a possibility we might’. The manager utilises mental reservation to rationalise her half-truths. Through mental reservation she holds in reserve, in her minds eye, the whole truth. In this way, she perceives that she doesn't lie. However, mental reservations are regarded as the adult equivalent of crossing one’s fingers. Information held in reserve is further supplemented with ‘mental reservation’. A statement with ‘mental reservation’ is deceptive, but not a lie and is considered false with good intention. The nurse manager makes a statement that at the time, and therefore in itself, is not false and for good intention. However, it suggests a false conclusion (suggesto falsi). Her statement may prove not to be a lie, although it remains deceptive since the relative believes her husband will not be sent away. Treatment untruths exist. In the care circumstance, a ‘major lie’ is recognised as a deception about services, medications, diagnosis or treatment. Lies of this type are so judged because they do not avoid a greater harm in the best interest of the
resident. Distinguishing between a major or harmless lie rests with the speaker – that is, categorisation is defined by intention. Personal carers perceive residents’ families utilise the lie as a strategy for securing their relative a placement in the residential aged care facility. Families may lie to staff and lie to the relative (resident to be) in an effort to improve the likelihood and ease of the relative’s admission. A consequence is that personal carers experience the burden of this type of deception with the resident’s pre-existing, but concealed, abusive behaviours. The service deceit as perceived by the physiotherapist, manifests as a tension between an obligation to the institution and her integrity. A ‘stock answer’, rather than a truthful answer, represents the therapist responding according to her role within the facility. Her public or institutional self speaks over her private or personal self. Medication mendacity, understood as ‘lying to help’, is reasonable because it is in the resident’s best interest but also for the greater good. Compliance is in the resident’s best interest since it ensures the therapeutic good of the drug and the resident’s safety. This benevolent deception (Melleril case) in contrast to honesty achieving compliance, is similarly portrayed in the researcher’s earlier study with the treatment of paediatric asthma. Equally, compliance is for the greater good in some cases because compliance contains the resident’s behaviours, thus maintaining and promoting a calm, controlled and safe ward environment. Whilst medication mendacity may cause some care provider uneasiness, it is considered otherwise ‘reasonable’ and ‘the best way’, if other strategies fail. A number of care provider insights add to the understanding of treatment truths – namely, the suppository lie, the smacking lie, skin tear silence and continence cover-up. The suppository lie highlights the categorisation of lie type. The personal carer perceives that this type of lie – failing to perform a documented intervention to avoid work, is harmful. This major lie protects the personal carer’s well-being (good) above that of the resident. The deception is intended to benefit the worker. The meaning within the smacking lie and skin tear lie is related. The smacking lie, in which a personal carer lies to cover for another worker, reveals that the worth of truthfulness is measured by the outcome. Getting caught out lying motivates one to be honest. Punishment for a mistake is less onerous than getting caught out.
However, the skin tear silence evidences that some fear the consequences of truthful disclosure. As telling the truth is evaluated for its capacity to avoid harm (outcome), a clinical environment that is perceived to punish perpetuates dishonesty (silence) within its staff. Additionally, continence pads hide the truth – as perceived by the nurse manager, from the family. The family’s subjective belief that their relative is continent is supported, since no harm is done. The nurse manager utilises mental reservation in her speech acts, resides in a relationship - at least with the competent resident (and probably insightful family) - based on mutual pretence and justifies her actions according to non-maleficence (see above for discussion about mental reservation). Amidst mental reservation, honesty in a personal carer-resident relationship can be achieved through telling the truth in simple terms. Residents are perceived to understand simple content about, for example, their medications. Information shared in simple language results in compliance. In contrast to medication mendacity, nurses express a view that a simple, open explanation produces a greater chance for compliance. Therefore, the nurses understanding of an honest but simple explanation holds for the competent resident who does not put at risk others’ safety and ward order. Incompetent residents and residents who put at risk others’ safety and the ward order forfeit an honest, simple explanation replaced by deceptive strategies, namely lying and concealment. 7.4.3
Dementia truth
In this study ‘dementia care’ means the care providers lie. Dementia truth is a lie, a false utterance that confirms another’s reality. Care providers describe as ‘harmless’ or ‘white lies’ the ‘not out-and-out lying’ or ‘bullshit’ that ‘colours, stretches or twists’ the truth required in their understanding of validation with residents with dementia. In other care circumstances, what the care provider does as it relates to truth-telling is not to lie. Rather, their actions are manifestly not telling the (whole) truth. A dementia truth represents a statement that validates another’s reality (not shared by consensus), is a false statement set against the shared consensus of reality, but which maintains the care provider-resident relationship and the psychological wellbeing of the resident. The consequences of the false claim or ‘fudge phone call’ (validation) remains fundamental to the care providers understanding of truth-telling.
The care provider ‘stretches the truth’ free of malicious intent. Rather, the personal care provider aims to comfort, settle and promote happiness (see Chapter 6: Role). As such, validation is conceived as a benevolent lie in which the ends justify the means. Validation is the appropriate mechanism for respecting the individual as it confirms as far as possible the perceptions and values of the individual person as opposed to arguing with the resident. However, the validation process causes differing perceptions about the ends justifying the means and indicates some uncertainty about the process as a legitimate therapeutic strategy, particularly in the context of truth-telling. This uncertainty may stem from the indication that there are mixed levels of understanding about dementia care and communication amongst care providers in the residential aged care facility. A personal carer’s (B1) critical voice speaks in opposition to the family’s request of care staff not to disclose to a resident with dementia the information that the resident’s spouse has died. The personal carer believes that the non-disclosure treated the resident as if she did not have any feelings nor any insight into the world outside the resident’s syndrome called dementia. In contrast, a fellow personal carer (A8) engaged in an almost identical but separate incident but participated in the same request for non-disclosure. In this case (A8), amidst the questioning about the whereabouts of the spouse by the resident, the personal carer ‘lied’ based on her ‘obligation to help in anyway possible’. Two propositions need to be discussed in the context of these differing personal carers’ responses to the non-disclosure of the spouse’s death to the demented resident. When dementia is understood by care providers to also mean forgetfulness and/or incomprehension, there is no reason for a falsehood (see ANL). A demented resident (conceived of as forgetful and unable to understand) will neither forget less nor understand more a truth or falsehood. However, if dementia is understood as an anxiety state (perceived as a harm by the personal carer), the rationale for the falsehood is as a consequence of an ‘obligation to help’ (ie role). Of importance is that a personal carer (B1) indicates that persons involved in the care of others with dementia should not assume that the person with dementia is not aware of what is going on and what others are saying. Some personal carers are also unsure when in the company of the resident with dementia, whether to orientate to reality, use diversion or utilise validation strategies. Whilst recognising the difference between the demented resident’s truth and reality, a personal carer is uncertain about whether she ought to orientate the resident to
reality (B2). Though corrected by her peers who have knowledge of the use of validation, a member of this group also speaks in terms of orientating the resident ‘back to a form of reality’ (B5). In this personal carer’s understanding, this is achieved by manoeuvring the truth – a process in which the actual account of events is introduced to the resident whether they have dementia or long or short term memory loss. This view understands the communicative strategies for dementia and memory loss as being the same. However, the view that the assumption that the dementing person has lost all shortterm memory is totally wrong. Additionally a care provider expresses concern about the use of a bus stop as a therapeutic intervention amongst residents with dementia (D1). In this case, the personal carer’s concern is clear – rather than perceiving the fake bus stop as a mechanism for validating a resident’s reality, the personal carer understands this care intervention as ‘abuse’ aimed at maintaining ward order for the sake of ‘a nurse’. Diversion, not validation, is understood as the appropriate communicative intervention for the resident with dementia. In a resident group, the residents question the demand to be told the truth ‘at all times’ set against a progressive, dementing illness. There is an understanding that there is an expectation for truth-telling for those aged residents with the cognitive capacity to understand. However, if in the process of senility, the resident loses the capacity to understand and ‘handle it’ then truthful disclosure is forfeited. In the case of Alzheimer’s disease, specifically half-truths are justified. When considering Alzheimer’s disease, residents concur with care providers’ views about the capability of another to judge what is in the best interest of someone else. As the disease process develops over time decisions can be made on behalf of the afflicted about the requirement for and nature of truth-telling. Two understandings are revealed. Firstly, what is disclosed – the dementia truth, varies over the course of the disease, so that over time the truth disclosed diminishes and the truth omitted increases. A different view, that is congruent with a misunderstanding amongst carers, is that over time the Alzheimer sufferer can be orientated to more and more of the truth.
7.4.4
Death disclosure
Within ‘The Home’, the perception amongst the care providers about an uncertainty of dying results in their hesitation over talking about it. Furthermore, the discomfort around death and dying discourse is an extension of personal feelings and professional obligations. In the case of the former, care providers must confront (as they likewise perceive the resident’s family) their own uncertainty about the emotions around death and dying, and in the context of perceived professional obligations, care providers feel compelled to ‘cheering you up’ (B1r). Euphemisms and delayed disclosure are strategies discussed by one nursing group. Consistent with the professional obligation to maintain a cheerfulness, so too the nurses’ role demands that they comfort. Therefore, the use of euphemisms to describe death is considered appropriate. The appropriateness of the euphemism is premised on the care provider’s role characteristic. That is, the caring role aims to comfort (to be ‘personal, warm’). Due to this same role characteristic, death disclosure to a resident’s family member over the telephone is delayed until the family member presents at the aged care facility. This approach is considered ‘a more humane way of telling…’. The degree of involvement by the family member in the care of the resident facilitates death discourse. A view consistent with previous discussion about knowing the family, openly telling a family member about a resident’s death over the telephone is a function of the depth of the family’s knowledge about the care circumstance. Openness is afforded to those who are expecting death, that is, who are perceived to know the resident is dying. Euphemisms or delayed telling occur with those who do not share an insight into the care circumstance and/or do not expect death to occur. The use of euphemisms surrounding death disclosure brings to truth-telling problems linked to misunderstanding and a false sense of reality. Data reveal that the care provider’s role perception and the consequent division of labour establish a division of disclosure. This division of disclosure is understood by the personal carers to exist when confronted with care circumstances surrounding death and dying. Personal carers understand that the nurse or family ought to be telling the resident about the resident’s dying and subsequent death. However, depending on the relationship that the personal carer shares with the resident (and the resident’s family), circumstances do arise where the personal carer openly
discusses death whilst recognising this as beyond their role expectation. The tension between the personal carers’ role understanding and how this limits their conversations means that in the care circumstance around death and dying, an awareness of such amongst the personal carer, resident or resident’s family will either manifest itself as a pretence, or the personal carer will breach a communicative role limit. Amidst the care provider’s uncertainty and role obligations that impact on their death disclosure, they recognise the benefits of openly acknowledging and confirming death and dying. Sharing views consistent with the residents in the study, they describe the calming effect and the closure in relationships that stems from honest understanding and acceptance of death. There is a conflict between the care provider’s role, the institution as a home and death disclosure. Death discussion in the residential aged care facility is contained in a context described as a ‘Home away from Home’ staffed by care providers defining themselves as happy comforters but understanding the institution as a dormitory for the dying. Openness about death and dying rather than suspicion or pretence, can be achieved in the residential aged care facility through re-defining ‘The Home’ as a hospice. Through a nurse’s (manager) own experience, the latter care context allows for ‘explor(ing) the possibility of death’ (DJJ). The hospice is recognised as a place for dying and death. The outcome of care in the residential aged care facility is recognisable as the same as the hospice. Death awareness and disclosure emerges as a key theme amongst the residents as they relate to truth-telling and in general discussion. With this resident awareness and care provider understanding of residency, the sharing of information about death and dying in a residential aged care facility is suited to the information management found within the philosophy of the hospice movement. However, in residency an open and collective truthfulness about death as a care outcome is at worst silent and at best fragmented. In this study, residents understand that death disclosure – telling another about impending death, is difficult and potentially upsetting. The residents’ perceptions about death disclosure are influenced by prior experiences. Experience with death and dying shows that potential ‘upset’ and fear of dying are reduced by discussing death. Rather than remain silent about death and dying, discussion provides ‘help’.
There is both a silence and a discomfort around death and dying discourse. The paradox of the silence about death and dying is that care providers acknowledge that residents can sense events about and around and involving themselves. Therefore, in the context of death and dying care providers are reluctant to talk about what it is that the residents already know. The study reveals that residents recognise and accept that they will die. The residency is described by the care providers as a dormitory for dying (a place for ‘waiting to go up to St. Peter’). Foregoing openness for the purpose of protection about death creates a mutual pretence. Furthermore, care providers need to determine early in a residents care if discussion about death and dying is deemed suitable, and to keep assessing this over the duration of residency. Personal carers’ role and relationship perception means that they at times both do and do not discuss a resident’s dying with the family. Personal carers in one group identified the role of death disclosure as one that, on occasion, belongs to the family. A resident agrees. Significantly, the determination of what to say, when to say it and the way to say that a resident is dying and will die, needs to be determined by actively engaging with the resident’s family and seeking out their preference. The view that death disclosure generates feelings (feelings of upset and uneasiness) is viewed by one resident as emphasising ‘assumptions’ about how another will respond. That is, any tendency toward non-disclosure about death and dying is perverted protection. The care providers’ ‘cheering’ temperament and avoidance of ‘matters that might upset’ (B1r) and their focus on ‘their own things that they do and their family…outside’ (B1r) the nursing home, acts to perform a defensive function against stress and anxiety experienced by nursing in daily confrontation with pain and illness. In the context of the study, those choosing not to tell, or not to disclose, are protecting themselves from their own feelings as well as or rather than protecting the resident. A further insight reveals itself consistent with the understanding of the care providers. As elsewhere amongst residents and care providers, a trait consistent throughout the study is this divide between what one would have done unto them and what one would do unto another in the context of truth-telling. Agents make judgements about coping with the truth that they believe are in the best interests of another whilst critical of the same behaviour bestowed by another unto them. In a passage between B1r and B2r both residents understand that truth-telling (about dying) needs to be set
against ‘consider(ing) the person that’s asking’. A paradox of protection re-emerges – the ability to account for another’s best interest and welfare in the guise of therapeutic privilege rests with the ‘I’ (‘them’, ‘us’) but is not to be exercised on the ‘me’ (by ‘you’). These past three chapters (Chapters 5, 6 and 7) have provided evidence for and have examined, respectively, the three core themes: Relationship (Chapter 5), Role (Chapter 6) and Residency (Chapter 7) in the context of truth-telling in practice. The final chapter summarises each of the previous discussions in Chapters 5, 6 and 7 and identifies relevant supportive literature to advance the central argument of the thesis. Finally, a number of recommendations are made.
CHAPTER 8 SUMMARY, RECOMMENDATIONS AND CONCLUSION
Figure 8.1: Truth-telling in practice
CHAPTER 8 SUMMARY, RECOMMENDATIONS AND CONCLUSION
8.1
Introduction
Each of the previous three chapters evidenced and examined one of the three core themes: Relationship (Chapter 5), Role (Chapter 6) and Residency (Chapter 7) in the context of truth-telling in practice (see Figure 8.1). This final chapter summarises core issues raised by the findings. Furthermore, relevant supportive literature is identified. The researcher relied on the interpretive framework – social constructionism and symbolic interaction, during this process, again asking: ‘Why do these people think and feel and act they way they do? Under what conditions do they think, feel and act the way they do?’ and ‘What are the consequences of their beliefs, feelings and actions?’ (Charmaz, 1990: 1165). 8.2
Relationship
Care providers collectively describe the resident-relative relationship as family (Wilson & Daley, 1998; Field, 1984; Gubrium, 1993). This is consistent with views that describe residency as ‘Home away from Home’ (Thoman Hartig, 1998) and as ‘family-centered’ nursing. The importance of this family relationship is that it is the basis upon which the care provider knows the other and makes determinations about truth-telling consistent with best interests (Tuckett et al., 1985; Cicirelli, 1992; Ryan, 1996). A relationship with a stranger (Armstrong-Esther, Browne & McAfee, 1994; Bitzan, 1998) or a variable relationship with resident or resident’s family undermines knowing, determinations about best interest and telling the truth. Evidence suggests that the nature of knowing and the form of the care provider - resident/resident’s ‘family’ relationship is not universal. The very existence of this non-linear, non-static relationship (Nussbaum et al., 2001) may argue against prescriptive communicative practices per se but does not argue against asking the residents’ their truth-telling preference. In practice, a consequence of the family relationship (as variable) for the personal carer is that it allows them to breach their communicative role limit. That is, to disclose to another what their role demands they do not.
The family relationship brings to the care circumstance issues about control (Tuckett et al., 1985; May, 1990; Nussbaum, 1993; Reed, 1996) and ownership of the resident. Care provider language that differentiates between the care provider becoming the family and resident becoming the family has implications on social norms that determine the locus of control (Cicirelli, 1992). In this ‘family-centered-nursing’ a trusting relationship is presumed to exist between the care providers and the resident (and resident’s family). Residents seek honest communication in care encounters if they are to have confidence in and trust for the care providers (Pask, 1994; Lupton, 1996; Salzman, 1973; Erlen, 1995). The literature suggests that ‘truth-telling …conveys respect (autonomy) that promotes trust and comfort in the relationship’ (parenthesis added, Appleton, 1993: 894) and ‘trust is built largely on communication’ (Lupton, 1996: 159). Furthermore, since the trusting relationship is premised on knowing over time – again underscoring the temporality of the relationship (Lynn-McHale & Deatrick, 2000), a residency described as time-starved must also assume trust and knowing. Truth-telling in practice featuring limited talk, defined and described in this study, leaves the researcher to conclude that trust is prematurely assumed by the care providers. 8.2.1
The researcher’s thesis – truth-telling & relationship
To advance truth-telling with an equal importance as instrumental care, the care providers must cease assumption and making judgements about the residents’ best interests. In the care provider-resident relationship, care providers must relinquish control of the relationship in order to allow the residents’ to say what are their truthtelling, informational preferences. A relationship of this kind means more ‘being with’ (listening) and less ‘doing for’ (tasks) the residents. Relationships of this kind are premised on both affective and effective communication, that is, a relationship of engagement. Flowing from this, there are significant educational and training implications that are addressed in the recommendations. 8.3
Role
8.3.1
Resident
Residents do exist who want to be in control of their own health as much as possible, who want to be autonomous and therefore seek truth-telling about their circumstances (Hauerwas, 1978; Appleton, 1993). In contrast, resident data from this study, suggest they perceive themselves to be powerless (Edwards & Noller,
1993; Nussbaum, 1990; Hummert & Morgan, 2001), infantalised (Wood & Kroger, 1993; Herring & Thom, 1997) and disenfranchised (Wood & Kroger, 1993). Palpably absent in the data is a convincing emphasis on what is told or not told by the nurse to the resident. Sharing information with the resident, the nurses’ data is silent (Harrington et al., 1998; Gubrium, 1993; Yates et al, 1995; Armstrong-Esther, Scandilands & Miller. 1989; Nussbaum, 1993; Edwards et al., 1993). The residents’ perspective of the care providers’ roles (personal carers and the nurses) confirm the division of labour (Burgio et al, 1990; Stillwell, 1993. Patterson, 1995; Mezey et al., 1999) and disclosure (Parathian & Taylor, 1993; Kendall, 1995) as described by the care providers themselves. The residents’ awareness of care providers’ characteristics – divisions of labour and disclosure and their role (and family’s practice) as ‘protector’ promotes mutual pretence (Glaser & Strauss, 1965) and again questions claims for the presumption of trust by care providers generally. Whilst critical of the care provider role as protector, in the context of truth-telling, both the residents’ identification of and the literature support the view that another’s protection
performs
a
defensive
function
(May,
1990).
Additionally
and
paradoxically, the parental role of the resident within the family with its subsequent element of protection complements the role of ‘parent’ described by the personal carer and the protection understood by care providers generally. 8.3.2
Care providers
A role emphasis on protection, comfort and happiness (McFarlane, 1976; Wallace, 1978), and a dominant perception that telling the truth can cause harm (Ross, 1930; Sprigler, 1996; Rosner et al., 2000; Andrews, 1996), mean that disclosure will be withheld (Hebert, 1994; Drickamer & Lachs, 1992), edited or partial in another’s best interests. This understanding, that care providers control information (Tuckett, 1998a) and are judges of others’ best interests (Webb, 1998; Tuckett et al., 1985) means that they invoke therapeutic privilege (Tuckett, 2001; Staunton & Whyburn, 1997; Kerridge et al., 1998) in their determinations about information disclosure. Caring as protection (McFarlane, 1976) aimed at harm minimisation through nondisclosure, promotes family denial and self deception about the resident’s care circumstance because it limits understanding of the clinical reality.
Additionally, their role understanding (and institutional policy) divides labour (Patterson, 1995; Mezey et al., 1999) and disclosure responsibility (Parathian & Taylor, 1993; Kendall, 1995) between the personal carer and nurse. Care providers’ descriptions and perceptions dichotomise care provider tasks and relationships, with the resident and resident’s family, in turn fragmenting who knows what about whom. Strategies for managing the division of disclosure – that is, telling or not telling according to care provider role expectation (Kendall, 1995) include, game-playing, obfuscation (Burgoon et al., 1994), lies (denial) (Turner, 1973), the use of nonverbals
(Potter,
1996),
phatic
communication
(Malinowski,
1923
cited
in
Fraser,1976) and mental reservations (Kerr cited in Barnes, 1994). Noteworthy is literature that suggests that in general, care givers make assumptions and erroneous decisions about others’ concerns (Heaven & McGuire, 1996), worries (Davies & Peters, 1983), needs (Lauri et al., 1997; Farell, 1991; Clinton et al., 1996; Kellet, 1998), desires and wishes (Holmes & Eburn, 1989; Melia, 1994). Specifically, this is also true in longstanding relationships (Pecchioni & Nussbaum, 2000). Furthermore it has been claimed that nurses do not get decisions right about what type of information another requires (Johnstone, 1976). The opportunity for resident autonomy (Johnstone, 1995; Ells, 2001) is second to the care provider advocacy role (Melia, 1994) in the guise of paternalism/parentalism (Mullins et al., 1998; Gent, 1997) and contrary to Pecchioni & Nussbaum (2002), this is not always benevolent. That is, evidence suggests that care providers may manage information as it best serves themselves – to avoid confrontation, as an easy option or to avoid scrutiny of their practices and the care circumstance. Consequently, care providers (significantly, nurses) risk claims from family of perverted protection. Under conditions surrounding hope, data suggested that a care provider’s hope is partial, realistic and positive. That is, it is not curative, yet goal orientated and in a resident’s best interests. By comparison, care providers perceive in some cases that resident’s (and family’s) hope is ‘total’, unrealistic and negative. That is, curative, beyond expectation or possibility and not in the resident’s (or family’s) best interests. Care providers therefore, communicate the desired resident (and family) hope as it relates to best interests, as determined by the care provider. Hope maintenance can be achieved through diversion, euphemisms and lies. Paradoxically, truth-telling in practice that omits to disclose certain behaviours (for benevolent reasons) that would
otherwise re-orientate a resident’s family to the ‘now-person’ resident, equally maintains a hope that results from knowing a ‘past-person’ resident. Residents may seek hope that they will be cured, but are grounded in their circumstances. Therefore, they desire open communication rather than protection from any perceived harms from a ‘hopeless’ prognosis (Moutsopoulos, 1984; Holroyd et al., 1996; Ajaj et al., 2001). Consequent on care provider determinations and strategies and residents’ desire, hope and mutual pretence in some situations are interdependent. Under conditions surrounding death and dying, prognostic uncertainty (Reeder, 1988; Henderson, 1935), role perception and personal emotions impact on the care provider’s openness in death discussion. Instances exist, where care providers accede to the resident’s family’s request for non-disclosure. Euphemisms (Bond, 1983; Tuckett, 1998a) and delayed announcement operate in a context of death for reasons consistent with the care provider’s role perception. The use of euphemisms surrounding
death
disclosure
brings
to
truth-telling
problems
linked
to
misunderstanding and a false sense of reality. 8.3.3
The personal carer
Personal carers acknowledge that it is expected that the nurse’s role is one of information gatekeeper. However, personal carers do breach their communicative role limit (division of disclosure) in some circumstances premised on a relational (Ryan, 1996; Tuckett, 1998a) and situational (Bonhoeffer, 1963) assessment (Gold et al., 1995). Under conditions of death and dying, personal carers breach the communicative role limit but also may operate in conditions of pretence (Glaser & Strauss, 1965). Even when personal carers express a role tension or frustration in the presence of the disclosure division, evidence suggests that they also contribute to this tension by their own variable actions. 8.3.4
The nurse
The nurse is described in the data as a happy, giving and positive person with an overt concern for protecting others (McFarlane, 1976; Wallace, 1978) from the harm of truth (Sprigler, 1996; Percival, 1849 cited in Reiser, 1980). The nurses’ role is underpinned by benevolence and non-maleficence (Kerridge et al., 1998; Beauchamp & Childress, 1994; Fry, 1988). Therefore, the maxim ‘above all do no
harm’ operates (Johnstone, 1995; Hall, 1996) so that what is disclosed or not disclosed must only ever produce a good, or minimize or avoid harm (Tuckett, 2000). The nurse is the information gate-keeper – information requires control and containment. The nurse (team leader) and nurse manager as fact controller is, in part, a product of perceptions amongst some about staff mistrust and staff aptitude, in part institutional policy and in part tied up in role understanding. 8.3.5
Resident’s family
Residents’ families do request the non-disclosure of information as epitomised in the common exhortation: ‘Don’t Tell Mum’. Care providers resent being coerced into non-disclosure at the request of another - rather the care provider wants control of this decision making (Tuckett, 1998a). The family engages in ‘quiet conversations’ with the doctor and are perceived by the resident to have control of information. Resident’s family and the care providers perceive care for the relative/resident as protecting him or her in the guise of therapeutic privilege. 8.3.6
The researcher’s thesis – truth-telling & role
The importance of truth-telling is that it allows the resident to be self determining about their care and to make reasonable decisions. Roles that demarcate communicative
practices,
roles
defined
by
paternalism/parentalism,
roles
underpinned by a misguided harm minimization and with a tight grasp on control over the resident have all been clearly identified in this research. Such roles do not advance the truth-telling in practice being argued for here. As with relationship, care provider roles (and that of the family) must be premised on both affective and effective communication with the resident. Educational and organisational policies and practices must support and facilitate role taking that promotes such communication. 8.4
Residency
Residency as ‘Home away from Home’ (Thomas Hartig, 1998) is described as sometimes chaotic, confronting but also challenging, threatening and a place where power is contested. It is a dormitory for dying (Nussbaum, 1993; Gubrium, 1993) and a place where residents have awareness (Glaser & Strauss, 1965). Residents’ perception, captured in the phrase ‘Don’t Tell Mum’, amounts to residents having suspicious awareness (Glaser & Strauss, 1965).
Residency is task orientated (Clinton et al., 1996; Armstrong-Esther et al., 1994). Additionally, it is time starved (Fry, 1998; Armstrong-Esther et al., 1994; Serghis, 1998; Forrest, 1989) with a tendency toward ward orderliness (Yates et al., 1995; Edwards et al., 1993; Gubrium, 1993; Tuckett, 1998a) little time for engagement with the resident (Harrington et al., 1998; Nussbaum, 1993; Roe et al, 2001) and little opportunity for resident autonomy. Residents identify the task orientation to care (Oliver & Redfern, 1991), limited time, and residency as short staffed (Serghis, 1998; Frank, Rosemary and Justin cited in The Queensland Nurse, 2002) with some resignation. Furthermore, they noted the consequential limited communicative engagement (Farell, 1991; Nussbaum, 1991; Patterson, 1995; Nussbaum, 1993; Armstrong-Esther et al., 1989; Armstrong-Esther et al, 1994) with either the personal carer or nurse. Residency is markedly temporal and the implication is that ‘gauging’, premised on knowing another’s capacity for hearing the truth is put at risk. Additionally, in this temporal context, managing information – truth-telling in practice, becomes a time management
strategy.
Furthermore,
engagement
and
effective,
open
communication brings to residency, in which care providers are overloaded with care tasks, an added burden of care (Anonymous, 1980). Care providers may not have the capacity to take on this additional care task. With a division of disclosure in a residency that is perceived to be under-resourced (staff and time) both suspicious awareness and mutual pretence are prone to prevail (Glaser & Strauss, 1965). In a context where time in the relationship is undermined, likewise claims for the presumption of trust must be undermined. The core business of care provider is the welfare of the resident – captured in the phrase ‘resident is our priority’. However, it may be too simple and seemingly idealistic to cite the resident as the only focus in residency. ‘Resident as priority’ is weighed against the more influential and potentially disruptive family. Consequently, information is sometimes not told to the resident. This core business, the resident as the priority, is an institutional ideal in tension with practical reality. In reality it means that the resident becomes an inactive participant in determining own best interests and care.
Under conditions surrounding dementia care, dementia truth as understood by the care provider is a ‘lie’, albeit either benign pretending, or a white lie (Hasselkus, 1997). Dementia truth (validation) utilises a ‘lie’ to confirm the demented resident’s reality for therapeutic outcomes – namely, to settle, to comfort and to calm. However, different views, understanding and uncertainty and errors exist about validation amongst care providers. Residents concur with care providers’ judgements about another’s best interests and consequent telling, in the context of Alzheimer’s disease. That is, both associate levels of understanding with telling another the truth as sharing a direct relationship. Incompetence or diminished cognition as justifying the withholding of information and non-disclosure (Drickamer & Lachs, 1992), needs to be challenged by the reality that it is an assumption that persons with dementia do not understand, and it is wrong to assume that they cannot express opinions of their own (Hamilton-Smith & Cluning, 2001). 8.4.1
The researcher’s thesis – truth-telling and residency
The health of the resident in a nursing home is directly linked to care provision that encourages autonomy. Residency that claims to have as its primary focus ‘the resident’ ought to take seriously the residents’ health and therefore the residents’ autonomy. However, a residency that is described as endowed with suspicious awareness and mutual pretence, overloaded with tasks, short of staff and starved of time with little engagement with the residents does fail to adequately understand this link. As with role and relationship, residency must re-orientate itself to be built on affective and effective communication. If the fundamental link between health, resident and autonomy is to have practical reality, it is necessary for nursing homes to review not only their expressed policies, but also their daily practice with a view to strengthening their efforts to promote and support autonomy. Where resources (time as well as human resources) appear to conflict, or inhibit resident autonomy, efforts must be made to adjust organisational culture to prioritise resident autonomy. 8.5
Truth-telling in Practice
Some contend that dishonesty may assist in achieving a preferred goal - that is, dishonesty has an instrumental purpose to achieve an outcome (Burgoon et al., 1994). It is the case in this study, with care providers indicating that truth-telling is instrumental and therefore ought only ever produce a good - the avoidance of harm. The worth of truthfulness is therefore measured by its outcome(s). Truth-telling in
practice as such is a partial, edited, stratal or half-truth (Schrock, 1980; Burgoon et al., 1994; Turner, 1974) that moves toward whole-story truth. Nurses and personal carers operationalise truth-telling similarly. Truth-telling is premised on ‘easing’ (harm avoidance) and ‘omitting’ (omission of detail). Family (and residents) are perceived to be harmed by and therefore do not want or need bad news (Sprigler, 1996; Sidgwick, 1966; Reed, 1988). Truth-telling in practice, underpinned by benevolent consequentialism means that non-disclosure aims to reduce the burden of harm(s) (Payton, 1984; Davidhizar, 1992). Under conditions of being truthful about treatment practices, evaluating truth-telling by harm avoidance means that a clinical environment that punishes mistakes risks perpetuating dishonesty (Tuckett, 1998a). Furthermore, the notion that telling another the truth is harmful or damaging (Bok, 1973) cannot be substantiated (Hebert, 1994; Wright et al., 2002) and is ‘insult(ing)’ to that person (Morris & Columbia, 1982: 2659). Knowing the resident or resident’s family is fundamental to care providers’ judgements about the what, the how and the why of telling the truth. Care provider data provide evidence that knowing is compromised, consequently the researcher concludes that judgements about truth-telling will be equally compromised. Since knowing and truth-telling are time dependent, within a residency that is time depleted, so too is the capacity for ‘knowing’ in the relationship, and subsequent judgements. Therefore, care providers’ ‘gauging’ another’s capacity to cope with the truth, risks being premised on assumption (Wright et al, 2002), can be wrong (Moutsopoulus, 1984), not support truth disclosure over time, and encourage both suspicious awareness and mutual pretence (Glaser & Strauss, 1965). It follows therefore that knowing what is in another’s best interest can only be determined by ongoing discussion (therapeutic communication) with the resident and resident’s family encapsulated in the phrase - ‘Ask the resident’ (Wallace & Appleton, 1995; Valck & Van de Woestijne, 1996; May, 1995, Schatterner & Tal, 2002; Buetow & Coster, 2001). Under conditions surrounding the concepts of denial, guilt and grief, care providers perceive these to be experienced by the resident’s family and to some extent, the resident. Denial, guilt and grief are considered existing harms with the admission of a resident into care. Truth-telling in practice, underpinned by protection, means that non-disclosure aims to reduce the burden of these as harm(s). The temporality of
guilt and grief, impacts on truth-telling in practice. The duration of guilt and grief (as perceived by the care provider) influences the degree of disclosure over time. Truth-telling in practice and the care providers’ acknowledgement of residents’ awareness produces a paradox. Those perceived to be aware of their care circumstance – either having insight into their health or observing conversations in corridors or the care providers’ behaviours, are protected from the harmful truth they already understand. Compounding this protection paradox is the resident’s acknowledgement that in the family relationship amongst kin, they also buffer the truth for another’s best interests whilst rejecting the same practices on themselves. Finally, care providers’ personal experience of and reflection about non-disclosure, though negative, fail to act as deterrents to initiating the same residency practices, albeit for benevolent reasons. 8.5.1
The researcher’s thesis – truth-telling in practice
Care providers’ personal experiences, evaluating as negative the consequences of not being told the truth (albeit for benevolent reasons), argue in support of the thesis. That is, care providers accounts of personal experiences have led them to evaluate as negative the consequences of not being told the truth. Paradoxically, care providers practice not telling the whole truth despite this evaluation. In order to maintain an individual’s (resident’s) personal integrity, truth-telling preferences and perceived impediments to open disclosure need to be addressed through a relationship-role-residency that promotes and allows ‘asking’. A shift in work culture is required. That is, the care providers’ ‘knowing’ that underpins their ‘gauging’ another’s capacity for truth-telling must be tested against an ‘Ask the resident’ focus. 8.6
Implications and recommendations for research, practice, education and policy
Further research needs to be undertaken to determine what constitutes the ‘home’like environment and whether or not this is reasonably represented in high level (nursing home) care. Additionally, this study by necessity is limited in scope. An important addition to the findings would be provided if the sampling was extended to include the meaning of truth-telling amongst residents’ families and doctors. Furthermore, it would be useful to compare the perceptions and understandings of truth-telling amongst participants in high level (nursing home) care across a variety of
differing institutional settings, in addition to those operated by the single organisation accessed in this research such as nursing homes operated by a religious/charitable organisation. Findings suggest that, in practice, care providers assume the residents’ and residents’ families are best served through protecting them from the (harmful, hurtful) truth. The best interests of residents’ (and their families) would be better served by asking them their truth-telling, informational preferences. A recommendation is that a telling audit (Schattner & Tal, 2002; Buetow & Coster, 2001) be implemented on admission and throughout residency in collaboration with the resident and resident’s family. A telling audit respects the wishes of the residents rather than assuming nondisclosure or universal openness or some point in between. The format of this audit needs to be developed and implemented in the future.
However, just as an
advanced healthcare directive informs healthcare providers in advance about another’s healthcare wishes and desires in the event of future incapacity, so too a telling audit directs in advance (and is noted in a resident’s medical records) the truth-telling, informational preferences of the resident.
Regularly revised, the
proposed audit eliminates suspicious awareness and mutual pretence. For those residents choosing not to be told, they are then at least in control but also aware of the risk of being told accidentally. This research indicates conclusively that residents do exist who want to be in control of their own health as much as possible, who want to be autonomous and therefore seek truth-telling about their care circumstance. It is recommended that rather than care providers’ defining themselves as protectors they need to re-define their role as facilitators who fully promote resident independence and control (autonomy). Change of this kind resides to a large degree in the education and socialisation of care providers. The educators of registered nurses must emphasis in their conception of care/caring the role of the practitioner as a facilitator. In turn, the registered nurses in the nursing home must model this role for the personal care assistants. Care provider determinations about the residents’ (or residents’ families’) best interests and therefore truth-telling, are inseparable from knowing the other in relationship. However, the emphasis in residency is on efficiency – doing tasks, giving instrumental care. Sound judgements about truth-telling preferences can only
be made through talking with another. A shift in practices needs to be made to emphasise affective care and communication. Simply, talk rather than tasks. A shift of this kind can be met through education (at tertiary level and at staff development level) and the re-orientation of work practices (institutional policy) that: •
underscores affective care as important alongside instrumental care,
•
reassures the care providers that telling another the truth is not harmful, and rather
•
openly talking with another is therapeutic,
•
reclaims care that is resident-centred so promoting improved openness.
Furthermore, care providers would benefit from education in the area of psychosocial nursing that provides them with insight into and skills for managing better the resident’s and resident’s family’s grief, guilt and denial, so that these do not exist as barriers to truth-telling. Equally, care providers would benefit from education that •
promotes improved, more open communication with the dying,
•
reinforces the role of validation in the care of, and challenges assumptions about decision making by, residents with dementia and
•
demonstrates the relationship between autonomy and another’s health.
Additionally, findings suggest that current staffing numbers and care provider roles need to be reviewed. Any recommendation that highlights the necessity for greater time for care providers to spend with the resident can only be effectively met with a review of staffing numbers. The provision of improved staffing numbers can be achieved through additional Commonwealth, State and local government funding. However, this recommendation does need to be placed within a broader conversation and future research about
Australian society’s value of an ageing
population and who must take responsibility for ‘fees for service’.
Furthermore,
attracting nursing and care staff to aged care requires improving the image of aged care nursing. Administrators need to reflect further on cost effectiveness and care effectiveness. Either the role of the personal carer better accommodates their disclosure autonomy so that greater openness with the resident prevails, or the role of the registered nurse needs to better reflect them as engaging with residents. In essence this requires employing better educated (personal) carers capable of effective communication or
altering staffing ratios so that the qualified registered nurse becomes the ‘hands-on’ care provider and ‘front line’ communicator with the resident. Finally, it is plausible that residency described as a ‘Home away from Home’ fails to capture the understanding amongst care providers and residents that the nursing home is in fact a place where the resident comes to die. It is recommended that residency as ‘The Home’ be re-orientated to a hospice philosophy (and an alternative nomenclature) that more honesty describes the facility. The re-orientated philosophy and attendant practices should make more open communication around death and dying. Such a re-orientation may require organisational re-alignment not only in terms of fundamental philosophy and practice, but also a review of organisational policies, funding mechanisms and formulae, and regulatory agencies and frameworks. If the focus for treatment and care is the resident, then this should not be seen as an overly burdensome task. 8.7
Conclusion
This research has sought to understand the meaning of truth-telling within the care provider/aged resident dyad in high level (nursing home) aged care. Therefore, the research has attempted to determine the conditions under which the research participants give meaning to and act upon their understandings about truth-telling and also examine the consequences of their beliefs, feelings and actions. Through understanding the relationship-role-residency trinity, truth-telling in high level (nursing home) care comes to be understood. It has been determined that the link between truth-telling and the nature of the care provider-resident (and residents’ families) relationship is that both personal carers and nurses in this study premise their understanding of truth disclosure on knowing the resident’s (and resident’s family’s) capacity for coping with the truth and therefore catering for the resident’s or family’s best interests. The breadth and depth of this knowing and how the relationship is described, determines what care providers will or will not tell. That is, the perceptions both personal carers and nurses have about the relationship – how they describe themselves as ‘family like’, ‘friend’ and ‘stranger’ has implications for the way disclosure operates and is described. Additionally, how care providers perceive and understand their role determines what care providers will or will not tell. That is, the perceptions both carers and nurses
have about their own and each other’s role – how they describe themselves for example as ‘hands-on’ carer and ‘happy good nurse’ has implications for the way disclosure operates and is described. Furthermore, care providers’ meaning and understanding of truth-telling in aged care is not possible in the absence of an appreciation of how the care providers give meaning to and come to understand the care circumstance – residency, the aged care facility, the nursing home. That is, the perceptions both personal carers and nurses have about the aged care facility – how they describe residency as ‘Home away from Home’ (and what this means), as a place of little time and a plethora of situations have implications for the operation of truth-telling in practice. This thesis argues that truth-telling in high level (nursing home) aged care is a fundamentally important aspect of care that ought to reside equally alongside instrumental care. Its importance is that truthful disclosure allows others to be self determining about their own care and thus allows them to make reasonable decisions. The health of the resident in a nursing home is directly linked to care provision that encourages autonomy.
Appendix 1 ‘Bending the truth’: professional’s narratives about lying and deception in nursing practice (Tuckett, 1998a) [This journal article is not available online. Please consult the hardcopy thesis available from the QUT library]
Appendix 2 Documentary evidence of research ethics clearance
Appendix 2.1T Time-line for research ethics clearance March 1998 QUT UHREC
November 1998 QUT Interim Approval
May 1999 Tri Care Approval
November 1999 QUT IEC Research Ethics Extension I
November 2000 QUT IEC Research Ethics Extension II
December 2002 Data Collection Ceased
June 1999 QUT Full Approval
Appendix 2.2T Process for Negotiation of Entrée for each Residential Aged Care Facility Meeting R & MNPCS
M-NPCS notified aged care residential facility
R posted Information Pack to A & M-CCS
R telephoned A & MCCS for meeting
R, A & M-CCS meeting
Information Sessions for Potential Research Participant
Information Session: consent & Personal Journals provided
Group discussion Started
(wait 7days) R = Researcher; M-NPCS = Manager-Nurse & Personal Care Services; A = Administrator; M-CCS = Manager-Clinical Care Services;
Appendix 2.3T Distribution, duration and ‘completion’ of the Personal Journals Aged Care Facility
Participant
A
Resident Carer Nurse Resident Carer Resident Carer Nurse Resident Carer Nurse Resident Carer Nurse Resident Carer Nurse
X B
C
D
E
Number of Personal Journals (N=57) 6 7 1 0 0 3 5 3 5 3 3 3 3 4 2 5 4
Duration Field (Weeks) 1 1 1 0 0 2 2-4 12 3 5 12 3 5-10 11-12 2 2 4
in
the
Not Completed (n=20) None completed 1 not completed Nil distributed Nil distributed
4 not completed
None completed 1 not completed 2 not completed 3 not completed
Appendix 2.4 Information Package
Appendix 2.5 Writing in your journal Read the following story. Over the next few days I want you to read this story, reflect on it, and make notes about what it means to you. Also, I am interested to read about YOUR own clinical story that relates to this story or relates to your ideas about truth telling. Your story may include you or relate to an event involving others. I am interested in reading about YOU – your beliefs, attitudes, values or sentiments about truth telling in your work-a-day life. Just write it down. Write how you speak. Write as you would always write. I am not interested in ‘correctness’ - I want to hear your voice. I will pick up your journal from you in about a week. With your permission, I may telephone or visit you before then to see how you are going. Thank you Tear………………………………………………………………………………………….. Journal Name:………………………………..Code:…………………Date:……… Nursing Home/Centre:…………………………………Code………………………………
Writer’s
Appendix 2.6 Nurse’s Story I’d lie to people that are dying, definitely. I mean, like dying before my eyes not (those) going to die tomorrow or the next day. I mean - people who are arresting. I’m very soothing with them. ... I hold their hand and tell them that everything is going to be O.K. When people are infarcting and getting streptokinase, they’re throwing all kinds of... ectopic beats and their blood pressure is down in their boots. I’ll be really soothing to them... I don’t know what it is but in my heart, I think for that reason, its O.K. to lie and not tell the truth to those people... You can’t say “.. you’re dying, your hearts in failure”, I mean, you just don’t, I’ve never done that. But yes, that’s one time when I’d definitely lie. The terminally ill .... will talk about death: “ Oh, you’re fine, you’re O.K., your treatment is doing well.” I talk to them about family, how prepared they are, what they think, if there is anything I can do - along those lines.
I was in a Nursing Home (caring for a) woman who had Alzheimer’s and she said: “Oh, where is my husband?” and I had been told that this lady had been a widow for about 15 years and I’d looked at this women and said to her: “Oh sweetie, your husband died 15 years ago” and the woman’s grief was instantaneous. It was like I was delivering the news for the first time about her husbands death and I felt devastated ... and I thought, “Oh my God, now I have this mourning woman...” and in hindsight .. if that ever happens to me again I might just say : “He’s out in the garden or he’s gone away or he’ll be back” only because I know that they’ll forget about it in a couple of minutes... If you delivered the truth to ( the Alzheimer patient) it might be really devastating for them ... I mean, I have never forgotten about that ... I think I might just divert them and not answer the question next time.
Maybe a relative of a patient rings up and they say: “I don’t want you to tell them that I phoned...I don’t want them to worry” and so I don’t say anything...Then through the course of the shift the patient says: “Did my wife ring today?” and I say: “Oh! No..no they didn’t ring”...and you can walk away and you think ‘I feel really awful because they have rung but she doesn’t want (him) to worry (and) she doesn’t want (him) to know they’ve phoned.’ Quite often (in my clinical area) that happens or, even, the patient will say: “Look, if my wife rings ... if my family rings don’t let on that I’m really, really unwell - just tell them I’m fine, O.K.? Or even when relatives ring up to make an inquiry about how a patient is ... their (heart rate) is a bit unstable, they might have been bleeding and we say: “Oh - yes, they’re stable” because we don’t want to say on the phone: “Well actually the blood pressure is a bit low, at the moment the heart rate is irregular and they’re bleeding - we’re thinking about re-transfusing at the moment...”
A lady came in (to the ward). Her husband had had an operation and had some weird bowel abscess...and she said: “Oh, what’s happened to my husband?” and I said: “I can’t tell you I’m a nurse”. She said: “I know - my friend’s a nurse, I know exactly what you mean.” I said: “Perhaps you could suggest things to me and I could say ‘yes’ or ‘no’ ? ” So , I wasn’t lying and I wasn’t telling her what was going on...but she was able to gain an understanding about her husband’s condition although I hadn’t actually spoken the exact words to describe the condition to her.
Appendix 2.7T Distribution of the Personal Journal-Nurse’s Story according to themes throughout the data collection period Theme
Intention, Motivation, Justification 14
Ethics ascribed to Role
Relationships persons, place
Culture of the Institution
15 14 14 Distribution# (N=57) # Number represents Personal Journal-Nurse’s Story distributed whether Journal ‘completed’ or not.
Appendix 2.8T Group Discussion characteristics Locale È A
Participants Æ Characteristic È Size Duration (hour, minutes)
Resident
Carer
Nurse
6 1hr 30minutes
7a 1hr
1a 1hr
B
Size Duration (hour, minutes)
3 1hr 15minutes
5 1hr
3 1hr
C
Size Duration (hour, minutes)
5 1hr 15mintes
3 1hr 15minutes
3 1hr 15minutes
D
Size Duration (hour, minutes)
3 0hr 45minutes
3 1hr 15minutes
4 1hr 10minutes
5 1hr
4 1hr
5
4
Size φ Duration (hour, minutes) Total Group 4 Discussion Æ a Heterogenous Group φ = No Group Discussion E
a
Appendix 2.9T Semi-structured, in-depth interview characteristics Locale È A
Participants Æ Characteristic È Frequency Average Duration (hour, minutes)
Resident
Carer
Nurse
2 1hr
1 1hr
1 1hr
B
Frequency Average Duration (hour, minutes)
3 0hr 45mintes
3 0hr 45minutes
2 1hr
C
Frequency Average Duration (hour, minutes)
3 0hr 45minutes
3 1hr 10minutes
3 0hr 45minutes
D
Frequency Average Duration (hour, minutes)
φ -
1 0hr 45minutes
1 1hr 15minutes
Frequency 2a φ Average Duration 0hr 45minutes (hour, minutes) Total 10 8 InterviewsÆ a Solo interviews only, no previous group discussion φ = No follow up interview E
φ 7
Appendix 2.10T Strengths of the Personal Journal with the Nurse’s Story as a guide and Group Discussion as methods Strength of the Personal Journal • Previous use in research involving care providers and elderly • Useful for sensitive topics • Provide research participants with anonymity • Rigour – contribute to triangulation
Strength of the Nurse’s Story as a guide • Previous use in research involving care providers and elderly • Useful for sensitive topics • Focuses qualitative inquiry on themes • Rapport – contributes to participant preparedness and comfort • Rigour – contributes to triangulation and validity
Strength of Group Discussion •
• •
• •
Previous use in research in Public Health, amongst care providers, the elderly and with sensitive topics Conversational – consistent with research’s theoretical stance Comprehensive – can capture wide range of perceptions, attitudes and beliefs Group effect – gives members security, power, control and anonymity Rigour – contributes to triangulation and validity
Appendix 2.11T Strengths of the Interview as a method Strength of the Interview • Previous use in research in Public Health, amongst care providers, the elderly and sensitive topics • Conversational – interactional: consistent with research’s theoretical stance • Comprehensive – adds detail and new insights to participant’s perceptions, attitudes and beliefs • Rigour – challenges researcher’s propositions, contributes to triangulation and validity
Appendix 2.12T Strengths of the Field Journal as a method Strengths of the Field Journal The field Journal provides a record of • researcher’s immediate and ongoing perceptions and interpretations of data • developing theoretical notes that contribute to final write-up • research’s context, critical incidents, aspects of data collection and general research process issues • definitions of themes-codes and decision rules • literature that supports the research’s propositions and ideas
Appendix 3 Demographic Information Sheet Name of Nursing Home Date Demographic Information Sheet Nurse Name Age (in years) Sex/Gender: Female Male (tick one) Nationality:………………………………………………… Highest level of Education: Yr 10 Yr 12 Other…………………………………… Qualification obtained from Education (above):………………………………………….. Other nursing related qualification(s) or certificate(s):…………………………………… Professional title:
Personal care assistant Enrolled Nurse Registered Nurse Other………………………………………………………………….
Current Employment level/step/grade:…………………………………………………... Years of nursing experience (in years):…………………………………………………..
Demographic Information Sheet Resident Name: Age: Sex/Gender: Female Male (tick one) Nationality:………………………………………………… Reason for residency/Nature of health:…………………………………………………... Length of stay:…………………………Years……………………………..Months……… Current level of assistance with care(s):
Full
Partial
Self Care
Name of Nursing Home: Date:
Appendix 3.1T Rationale for the development of the Interview guide • • • • • •
Questions were ‘grounded in’ emergent themes and seemingly contradictory cases, following-up of the atypical experience challenged the adequacy of insights and in turn challenged the researcher to formulate more valid conclusions, emergent themes and seemingly contradictory cases determined the interviewee, contributing to the research’s rigour since themes and interpretation could be checked with the participants for accuracy and clarification, member checking ensures that the participant’s voice is captured as the participant meant it to be and that the participant’s meaning is understood, and to facilitate group and participant data comparison and to stimulate a response that was either complementary or argumentative.
Appendix 3.2T Residents’ Demographicsa Resident
Age
Sex
Nationality
Reason for residency
Length of Residency (year/months) 3/1
A1r
87
F
Australian
L CVA, R hemiparesis
A2r
70
F
Australian
Incomplete quadraplegic
2/0
A3r
64
F
Australian
0/11
A4r
78
F
Australian
A5r
61
M
British
A6r
80
M
Australian
Decreased mobility and self care Post CVA – decreased mobility Decreased balance CVA
B1r
88
F
British
0/6
B2r
∅
∅
Australian
B3r
82
M
Australian
C1r
91
F
Australian
C2r
74
F
Australian
C3r
85
F
Australian
C4r C5r
∅ 77
F F
∅ Australian
D1r
88
M
Australian
D2r
79
F
Australian
Osteoartritis causing decreased mobility Parkinson’s Disease with decreased mobility Parkinson’s Disease with decreased mobility Decreased mobility Parkinson’s Disease with decreased mobility R CVA, L hemiparesis ∅ R CVA, L hemiparesis Decreased mobility and self care R CVA, L hemiparesis
D3r
97
F
British
4/0
E1r
87
F
Australian
E2r
∅
F
Australian
L CVA, R hemiparesis Osteoarthritis causing decreased ability to self care Emphysema
1/5 ∅ 1/3
∅
Level of assistance2 Partial. Assist walking. Self transfer Partial. 2 person lift. Use of swivel disc. Wheelchair Full. Assist with self care and transfer Partial Partial. Assist with hygiene. Self feed Partial. Self transfer to toilet Partial. Assist with hygiene and reaching. Wheeliewalker Partial. Assist with cares. Wheelchair
1/5
Partial. Assist with cares. Wheeliewalker
1/0
Partial.
1/0
Partial. Assist hygiene cares
2/6
Partial. Assist hygiene cares ∅ Partial. Assist with hygiene Partial
∅ 0/1 3/0 0/9
0/6
0/6
Partial. Assist with hygiene and grooming Partial. Assist with lifting and hygiene Partial. Assist with dressing and grooming
Full. Nasal oxygen insitu a Self reported ∅ Not reported Abbreviations: R=right, L=left, CVA=cerebrovascular accident 2 Level of assistance=assistance from care staff is either full, partial or self care(no assistance required)
Appendix 3.3T Personal Carers’ Demographicsa Carer
Age
Sex
Nationality
A1 A2 A3
42 46 42
F F F
Australian Australian British
Highest level of education1 S S S
A5 A6 A7 A8 B1
38 54 ∅ 27 41
F F F F F
Australian British ∅ Australian Australian
S S ∅ S T
B2 B3
45 44
F F
Australian Australian
S T
CEL2 PCA PCA Level 3 PCA Level 3 PCA PCA PCA PCA Level 3 PCA Level 4 (Diversional Therapist) PCA Level 3 Physio therapist PCA PCA Level 3 PCA Level 3 Enrolled Nurse
Other certificate/ qualification ∅ ∅ Maternity nurse aid Level 3 ∅ ∅ ∅ ∅ Diploma Leisure studies and health science ∅ ∅
∅ ∅ ∅ Enrolled Nurse Certificate 3 C3 48 F New Zealand S PCA Diversional Therapy Certificate 4 C1 52 F Australian S PCA ∅ D2 F Australian S PCA Level 4 Diversional Therapy ∅ D3 45 F Australian S PCA Level 5 Diversional Therapy Certificate 4 & Aged Community Care Certificate 4 E1 46 F Australian S Enrolled Nurse Aged Care Certificate E2 56 F S PCA Level 3 ∅ ∅ E3 42 F South African PCA Certificate Police ∅ Administration E4 21 F Australian S PCA Level 1 ∅ E5 23 F Australian S` PCA ∅ a Self reported 1Highest level of education: S=Secondary T=Tertiary 2CEL=Current Employment level: PCA=Personal Care Assistant, RN=Registered Nurse 3YNE=Years care/nursing experience B4 B5 C1 C2
47 55 47 38
F F F F
British British Australian Australian
T ∅ S S
YNE3 7 10 25 20 25 ∅ 10 5 1 13 20 37 27 23 20 ∅ ∅ 6
8 23 4 3 6
Appendix 3.4T Nurses’ Demographicsa Carer
Age
Sex
Nationality
ANL BJS BCT BAN
50 38 38 40
F F F F
CPJ
41
CAS
CEL2
Australian Australian Australian Australian
Highest level of education1 S ∅ T T
RN RN Level 7 RN Level 1 MCCS
F
British
S
MCCS
52
F
Australian
S
RN Level 7
CAH
49
F
S
RN Level 8
DJJ
46
F
British/ Australian Australian
T
MCCS
DCI DNB
51 55
F F
∅ New Zealand Australian Australian
T ∅
RN RN Level 7
Other certificate/ qualification Continence Adviser ∅ ∅ Postgraduate certificate(Gerontology) Postgraduate certificate(Gerontology) Certificate Maternal & Child Welfare Continence Adviser, Diploma Opthalmic Nursing Bachelor Health Science, Continence Adviser ∅ ∅
∅ Certificates in Palliative Care, Oncology, Diversional Therapy & Counselling ELQ 53 F Australian S RN Level 7 ∅ EPO F RN Level 6 Certificates in Palliative Care ∅ ∅ ∅ & Dementia Care EPD F Australian S RN Certificates in Dementia ∅ Care, Infection Control Workcover Rehabilitation Officer a Self reported 1Highest level of education: S=Secondary T=Tertiary 2CEL=Current Employment level: PCA=Personal Care Assistant, RN=Registered Nurse, MCCS=Manager-Clinical Care Services 3 YNE=Years care/nursing experience DGS EAO
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RN Level 7 RN Level 7
YNE3 35+ 17 5 20 25 34 32 17 23 38 10 25 10 29 10
Appendix 3.5T Field notes for investigator triangulation process Site: D Methods: Group discussion Group: Nurses Total duration of meeting: 3hrs 10minutes Transcript Principle researcher’s notes (Tuckett) Page 1 DJJ: family dynamics-decision making ‘balance’ re: family’s influence 2 DJJ no lies but ‘misleading’ → Tws is edited ‘keepback’ as a filter, RN deicdes “Yes” “No” what will be told [Engaged in filtering] DJJ ‘shielder and defender → mental reservation [Truth-in-transit] DNB rationale for ‘filtering’ ‘shielding’ Co-researcher ‘Why do they need to know that?’ ie ‘need to know’ as ‘reasonable’ 3 DNB ignore as shielding [Truth-in-time] Co-researcher ‘I don’t want to know detail…how much do you want to know…need to know?’ DNB: does it really if hurt Who decides? [Role & relationship] Co-researcher ‘management of behaviour’ 4 DGS dementia Co-researcher competence Vs incompetence DJJ family Co-researcher ‘primacy of family’, nondisclosure to resident in front of family, co-researcher’s ‘masonic wink’, ‘tweak-the-truth’ [Awareness, easing-and-omitting] 5 DJJ ‘fairly honest’ hospital and nursing home ethic Co-researcher: Acute-clear tendency tt, instrumental, distant professionalism; chronic less clear, decreased tendency to tt, enaged, affective 6 Co-researcher ‘Where is the resident?’ → RN fact controller Vs Family as fact controller Co-researcher Its OK for the RN but not the family Notes Complimentarity: filtering & omission, shielder & defender/protectionism, role as fact controllers/behaviour management, information management D&AT concurred with the theme ‘Truth-in-Transit’ and discussed the implication that a nurse can argue that what is true can never be told (subjectivity) since what is true can only ever be true @ the time & delays (editing) risk never telling given the emphasis on residency as a place for dying. D&AT agreed that a distinction was being made between acute & chronic care. Acute care provides a clear tendency toward tt &tt is instrumental and the worker is capable of dispassionate professionalism. Chronic care blurs tt but a perceived stronger propensity toward engagement with another (resident). D made a TN that within the data there is an obvious ‘absence of the resident’.(D’s ‘partners without patients’) The resident as agent is ignored. D concurred with AT that the nurses’ hold the view that whilst it is the role of the nurse to be a ‘fact controller’ it is not perceived by the nurse the case for the family to do so. The researchers D & AT debated there personal views about the ‘data’ TN that the role of the nurse is to determine what the resident/family ‘want and need’ to know - ‘a need to know basis’. D believed that such a role is reasonable since the res./family ‘Don’t know what they need because they don’t know what question to ask”. AT does not agree and believes the nurses need to ask the res/family about ‘wants’ and ‘needs’. ‘don’t leave here as a rule’ Co-researcher Hospice philosophy –institutional philosophy [Residency] DGS dying,your palliative Co-researcher ‘partners without patients’ [Silenced residents] DJJ family ask ‘Don’t Tell Mum’ Co-researcher ‘one-way deceit’ [insider-Outsider, awareness] DJJ they want us to lie to Mum Co-researcher Carer deceit or falsehood is ‘compassionate evasion’ families lie
7
8
DJJ stuck in the middle [Battle/power relationship] Co researcher line management ‘Doctor broke rank’ DJJ She’s got a right to know [Ward orderliness] Co-researcher makes my job easier DJJ trapped in a major lie [Insider-outsider] Co-researcher Active deception is OK (we decide) but passive deception is not (someone else decides) Dickon’s Mrs. Do-be-would-be-done-by DNB little bubble
Notes
Agreement with the implication(s) that working in a nursing home with the view that residents ‘don’t leave here as a rule’ (die)-[residency] becomes a (dormitory for dying) ? consistent with the philosophy of care. Hospice situations tend toward openness (according to literature). D & AT concurred with the presence of the resident who is ‘silenced’ in the care relationship. D proposed the theme ‘partners without patients’ as identifying this. Residents are not included, engaged with, asked…the ‘other’ decides. Agreement with A’s ‘insider-outsider’ (see d:116) sub-theme. D called it ‘one-way-deceit’ in which deceit is reasonable when the carer decides and acts or sanctions the decision but it is unreasonable, unacceptable (for the carer) if the ‘other’ decides, acts or sanctions it. D’s ‘one-way-deceit’ additionally extended to permit the carer to label the ‘other’ as a ‘lier’ whilst the carer engaged in ‘compassionate deception’. D identified the idea ‘line-management’ – he saw carers responding to and maintaining a strict hierachy and an expectation that others (for eg doctor) ‘not break rank’. A concurred with his notions of ‘the battle’ (power/control). See A’s metaphor battle/war. D identified the idea of carer response and reasoning ‘to make my job easier’. A identified this as ‘ward social order’ as ‘keeping the calm’. In this eg. the instance that the resident has a ‘right to know’ finds justification in ‘to make my job easier’! D identified the idea of the dichotomy active deception/passive deception; OK/not OK. We discussed this. He described the character Mrs Do-as-you-would-be-done-by. His characterisation is consistent with the ‘one-way-deceit’/’insider-outsider’. Carers (namely the RN) can do what they do, others cannot unless sanctioned by the carer (RN) Inconsistent agreement: D acknowledged he ‘wasn’t sure’ about the implications or importance of the ‘sweet little bubble’. This alerted us to a criticism of researcher triangulation of this nature. A has a closer relationship with the data than D and is connected with the data in a constant comparison. D acknowledged the physical/mental ‘difficulty’ and ‘effort’ required to do this type of analysis well. A ellaborated the notion of ‘sweet little bubble’ as Ownership-the now-resident Vs past-resident, Vision splendid.
9
DNB: whose reality [Subjectivity] DJJ ‘easing and omitting’ Co-reseracher active/passive-comission/omission [Teo] DJJ active, gatekeeper Co-researcher I decide what is good for the resident D NB ‘handle it DJJ my experience, my intuition, I decide Co-researcher shield & protect [Protectionism] Guilt [Guilt time] Co-researcher embarrassement, don’t want to hear poop stuff [corporeal concealment] Co-researcher we are the carer-professional expertise unavailable to family Co-researcher continence/incontinence, hidden away [Treatment truths] Co-researcher truth-telling by layer [Teo, stratal truth-telling, layers] DJJ blatant, blunt Co-researcher nurses as professional & gatekeepers DGS litigation Co researcher avoid an incident with family, resident sitting quietly [role, relationship; care intention; battle] D JJ balance DCL we are kidding ourselves Co-researcher weighing up pt well being-family’s well being-(saving) our guts from being garters [Protectionism-professional protectionism]
10
11 12
13 14 15
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