Transcending Responsibility

Transcending Responsibility Empirical and theoretical perspectives on involuntary admission of patients suffering from Korsakoff’s syndrome.

Susanne van den Hooff

Photo at cover: © Susanne van den Hooff, Vallendar, 2015 Cover design: Proefschriftmaken.nl || Uitgeverij BOXPress Printed & Lay Out by: Proefschriftmaken.nl || Uitgeverij BOXPress Published by: Uitgeverij BOXPress, ‘s-Hertogenbosch © Susanne van den Hooff, Utrecht, The Netherlands

The printing of this thesis was financially supported by the Korsakoff Knowledge Center, Rotterdam and Hogeschool Inholland, Alkmaar.

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‘Faith is taking the first step even when you don’t see the whole stairway’. Martin Luther King (1929-1968)

Transcending Responsibility Empirical and theoretical perspectives on involuntary admission of patients suffering from Korsakoff’s syndrome

Overstijgende verantwoordelijkheid Empirische en theoretische perspectieven op onvrijwillige opname van patiënten met het syndroom van Korsakov (met een samenvatting in het Nederlands)

Proefschrift ter verkrijging van de graad van doctor aan de Universiteit voor Humanistiek te Utrecht op gezag van de Rector Magnificus, prof. dr. Gerty Lensvelt-Mulders ingevolge het besluit van het College voor Promoties in het openbaar te verdedigen op 1 december 2015 ’s middags om 12.30 uur

door Susanne Lucienne van den Hooff geboren 27 augustus 1965 te Roden

Promotores: Prof. dr. Anne Goossensen, Universiteit voor Humanistiek Prof. mr. dr. Martin Buijsen, Erasmus Universiteit

Beoordelingscommissie: Prof. dr. Arjan Braam, Universiteit voor Humanistiek Prof. dr. Evert van Leeuwen, Radboud Universiteit Prof. dr. Katrien Luijkx, Tilburg University Prof. dr. Hendrik Roozen, Tilburg University Dr. Dorothea Touwen, Universiteit Leiden

Contents Chapter 1 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 General Introduction Chapter 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Healthcare professionals’ difficult balancing act in admission of patients suffering from Korsakoff’s syndrome into long-term care Chapter 3 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 37 How to increase quality of care during coercive admission? A review of literature. Chapter 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55 Conflicting conceptions of autonomy. Experiences of family carers with involuntary admissions of their relatives Chapter 5 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75 Ethical considerations of the value of patient knowledge in long-term care. A qualitative study of patients suffering from Korsakoff’s syndrome Chapter 6 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91 Healthcare professionals’ dilemmas: judging patient’s decision making competence in day-to-day care of patients suffering from Korsakoff’s syndrome. Chapter 7 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107 Healthcare professionals under pressure in involuntary admission processes Chapter 8 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123 Findings and General Discussion Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Samenvatting (Dutch) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Dankwoord (Dutch) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Curriculum Vitae . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . List of publications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

139 145 149 151 153

7

Chapter 1 General Introduction

9

General Introduction

Problem statement This thesis focuses on involuntary admission processes into long-term care of patients suffering from Korsakoff’s syndrome. In general, the number of involuntary admissions in the Netherlands is still rising (Post van der et al. 2009; Van de Wetering 2008). It is a procedure that is widely discussed from ethical point of view, notably with respect to emerging tensions between individual freedom, the need to protect patients, and paternalistic interferences. Within the healthcare sector in western societies, values such as independence of others’ help, self-dependence and self-determination, and the opportunity to choose and take responsibility for one’s one life are dominant values collectively referred to as autonomy or self-management (Delmar 2013, 975). Patients’ autonomy seems to be a key principle in the consideration of an involuntary admission. However, the principle of autonomy has many facets, which are difficult to catch in a single definition without losing some of its meaning. As Schermer (2001) noted: ‘It is best understood as an umbrella notion that can cover different aspects and can be understood from different perspectives’. This notion permeates the work in this thesis. In standard works and textbooks on medical ethics, patients’ autonomy in the context of medical and research practices is generally understood as the right to self-determination, that is the right to make one’s own choices and the obligation of others to let one do so. Patients are, in general, seen as free, self-governing agents who carry final responsibility for their own health and are entitled to choose for themselves what norms and values they want to pursue. They are free to make autonomous decisions – decisions that are un-coerced and best express the outcomes of their own deliberative process (Christman 2004). Other persons have to defer to these choices, even when they diverge from the norms and values that prevail in society (Welie 2008, 13). However, the right to autonomy1 is not just about refusing treatment or admission, often called the negative right derived from the principle of autonomy; it is also about being involved in the decisions about treatment or admission, which can be seen as a positive right. Without adequate information a patient cannot attain autonomous decisions. Thus, protection of patient autonomy also imposes a positive duty to provide satisfactory information to ensure that patients are free to make their own decisions. This thesis narrows the focus on the interpretation and the role of the principle of autonomy during the procedure of involuntary admission of patients suffering from Korsakoff’s syndrome in the Netherlands. In the Netherlands, involuntary admission is permitted only when patients meet three criteria stated in the Dutch Compulsory Admission Act (BOPZ). Firstly, the patient does not agree with admission. Secondly, he presents a danger to himself or others as a consequence of his mental condition. Thirdly, there is no reasonable alternative 1

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It should be noted here that autonomy is not a legal rights described in for instance international legislation. It is however recognized as a right by the European Court of Human Rights (EHRM 29 april 2002, Pretty/UK. Autonomy in the sense of the right to self-determination often is understood as the right to be left alone, but also refers to the freedom to make own choices and being entitled to self-development (Hendriks 2014).

for the involuntary admission. A comprehensive description of the admission possibilities is given in chapter 2 of this thesis. The law is clear: it is unlawful to impose a medical treatment on competent persons without their consent. In the Netherlands a Court of law decides the permissibility of involuntary admission. When a judge has decided that a legal mandate is required, there is no appeal possible against this decision. The first time a legal mandate is assigned, it is valid for a period of six months. However, the Court is empowered to decide for a shorter period. After these six months, medical experts can apply for an extension of the legal mandate for up to one year, after which a new one-year extension can be applied for. After a patient has been involuntary admitted for five consecutive years, the Court may decide to prolong the mandate for two years. The process of requesting a legal mandate at Court seems problematic when Korsakoff’s syndrome has not yet been formally diagnosed. The fact is that most patients appear quite normal, often have normal IQs, and can be alert, intelligent and attentive. Nevertheless, Korsakoff’s syndrome is a chronic neuropsychiatric condition, characterized by impairments of memory and executive functions, among other things. It often results from acute Wernicke’s encephalopathy, which is a medical emergency mostly secondary to chronic alcohol abuse and concomitant thiamine deficiency. Untreated, Wernicke’s encephalopathy will lead to death in up to 20% of cases (Harper et al. 1986) and in 85% of the other cases will result in Korsakoff’s syndrome (Day et al. 2013). The Diagnostic and Statistical Manual of Mental Disorders (DSMIV-TR) refers to Korsakoff’s syndrome as alcohol-induced persisting amnestic disorder and includes it under the category of substance-induced persisting amnestic disorders (American Psychiatric Association 2000). Prevalence studies are out of date or lacking (Wijnia et al. 2012; Draper et al. 2011). The care needs of patients are often not recognized adequately (Schepers et al. 2000) and often clear diagnostic criteria for Korsakoff’s syndrome are missing (Oslin et al. 1998; Galvin et al. 2010). In the Netherlands, the number of people suffering from Korsakoff’s syndrome is estimated at 8,000 to 10,000. This estimated number seems fairly stable2. The syndrome, which is usually progressive, can be arrested by massive doses of vitamin B1, but cannot be reversed (Kolb & Whishaw 1985; Arts 2004; Kopelman et al. 2009). Up to 25% of patients require long-term institutionalization, because they are no longer able to live an independent life and permanent care remains necessary (Victor et al. 1989; Kopelman et al. 2009, 148). These patients can be admitted to nursing homes at a relatively young age and the number of these young patients is growing3. In literature, little systematic information about the lives of patients suffering from Korsakoff’s syndrome can be found. Also, hardly any information is available about the consequences of legal interventions and actual proceedings in care practices for these patients. Due to their reduced awareness of illness they perceive no problems (Wijnia et 2 3

http://www.korsakovkenniscentrum.nl, visited on January 20th 2015. http://www.korsakovkenniscentrum.nl, visited on February 17th 2015.

11

Chapter 1



al. 2012, 104) and consequently will not ask for and even reject offered care. A newspaper article4 illustrated this problem. Textbox 1. Newspaper article: ‘A Hague physician (52) was removed from his profession. The Haque – Yesterday, the College of Medical Supervision (College van Medisch Toezicht) removed a 52-year-old physician from his profession. The physician has a drinking problem. For many years he has been suffering from Korsakoff’s syndrome, a disease which is the result of years of alcohol abuse. He still thinks that he is able to practice his profession despite his drinking problem. According to himself, his patients have never been in danger. Nevertheless, he was voluntarily admitted into an institution in 2005, because he felt that his drinking became a serious problem and should be ended. During this admission Korsakoff’s syndrome was diagnosed. In 2008, this was reason for the Health Care Inspectorate (IGZ) to file a complaint against him. The man, who worked as a physician in a nursing home and as a medical insurance doctor, denies that he suffers from a serious illness. (...) Moreover, he cannot remember much and has problems to concentrate. “This makes him incapable of practicing his profession”, argued the College.’

Not surprisingly, moral questions surrounding involuntary or coerced admissions of these patients play an important role. Especially, the role of coercion in this specific admission process seems important, because it is not always possible to arrange a formal legal mandate for an official involuntary admission. The criteria laid down in the Dutch Compulsory Admission Act cannot always be met or even create confusion. Often, the use of some kind of coercion seems the only option to provide care to these patients. Coercion in this sense can be defined as: “The intentional overriding of one person’s preferences or actions by another person, where the person who overrides justifies the action by the goal of benefiting or avoiding harm to the person whose preferences or actions are overridden” (Beauchamp & Childress 2013, 215). It is not unthinkable that without coercion patients suffering from Korsakoff’s syndrome literally will drink themselves to death. In a scientific context, especially within the framework of law, ethics and healthcare, questions can be formulated on legal interventions, coercion and incompetence of patients suffering from Korsakoff’s syndrome (Goossensen et al. 2007). In practice, admission can lead to complex situations and questions. As mentioned above, most patients suffering from Korsakoff’s syndrome lack insight into their illness and reject care. They have not committed any offence, apart from being repeatedly intoxicated in public perhaps, but still are compelled to enter an institution for their own good (Hall et al. 2014). Can they be seen as free, selfgoverning agents who carry final responsibility for their own healthcare? Are they entitled to choose for themselves what norms and values they want to pursue? What is society’s role with respect to these patients? Do we have to interfere in these patients lives or should they be left on their own? How can we judge this? What can be understood as good care during involuntary admission processes? 4

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Noord Hollands Dagblad, 13th January 2010.

Little is known about the what and how of involuntary admission of a patient suffering from Korsakoff’ syndrome – and the impact this has on persons involved. The goal of this study was to enlighten this process in a way that is relevant to scientific theory and practice, that is by investigating the experiences of the actors in this process. Before describing the aim and methodology of this research, it may be worthwhile to introduce the theoretical entrances for good care during involuntary admission used in this thesis.

Theoretical entrances Involuntary admission processes are multi-disciplinary processes in which healthcare professionals, legal professionals, family carers, and patients all come together. Their knowledge and perspectives are at the very core of the subject matter of this thesis. Starting point for this study are the theoretical entrances for formulations of good care found in the legal, medical and ethical discourses. First of all, Dutch involuntary admission law provides a rationale for the concept of involuntary admission and it gives procedural context to the focus of this study: the criteria applicable to involuntarily admit patients suffering from Korsakoff’s syndrome. A description of Dutch healthcare law in force at the time of this study can be found in the sub-studies reported in Chapters 2 and 4. By its nature, legislation is not able to give answers to complex moral dilemmas; it only delineates the boundaries of the area in which ethical considerations should be made (Touwen 2008, 247). Secondly, most literature in the medical discourse describes good care within treatment situations such as care during interventions or diagnostic processes, instead of the admission situation. However, in both situations healthcare professionals are recognized as having high medical responsibility and morality; each medical decision must be balanced between their science-based medical knowledge and the unique situation of the patient (Touwen 2008, 252). This professional morality specifies general moral norms for the institutions and practices of medicine. In recent years, codes of medical and nursing ethics have provided more formal

Textbox 2. Some parts of the Code of Conduct for Physicians. “I.1 The physician is guided in his professional practice by the promotion of health and wellbeing in humans; the quality of care; respect for the patient’s right of self-determination and the interests of public health. I.5 The physician observes the limits of his professional practice. He refrains from actions and statements that exceed the scope of his own knowledge and abilities. II.2 The physician will treat patients equally in similar situations. II.3 The physician tailors the care to the patient’s actual individual needs. II.7 The physician has a duty to respect the patient’s rights according to the law, case law and the guidelines of the professional association. II.9 The physician actively involves the patient in the decision-making process. He does not take any action until the patient or his or her representative, after receiving sufficient information, has granted specific consent.”

13

Chapter 1



codifications of, and instructions in, professional morality (Beauchamp & Childress 2013, 7). In the Netherlands, for instance, the responsibilities of physicians are described in the Code of Conduct for Physicians (Royal Dutch Medical Association [KNMG], 2002). Some of these responsibilities are given in textbox 2. According to the most dominant view in bio-medical ethics, good care is grounded on four moral principles: respect for autonomy (a norm of respecting and supporting autonomous decisions), non-maleficence (a norm of avoiding the causation of harm), beneficence (a group of norms pertaining to relieving, lessening or preventing harm and providing benefits and balancing against risks and costs), and justice (a group of norms for fairly distributing benefits, risks and costs (Beauchamp & Childress 2014, 13). These principles are not rigid or absolute, instead they must be accurately balanced and specified so they can function in particular circumstances (ibid, 15). When problems of choice emerge, methodically thinking through the alternatives may be necessary, as is deliberation, till in the end a conclusion can be reached. Another theoretical entrance for the formulation of good care can be found in care ethical approaches, which focus on the vulnerability of humans. The central concepts in these approaches are the specificity of situation and context, attention to the manner in which people interact, and sensitivity to the feelings that emerge during this interaction (van Heijst 2011, 18). These underline the interdependency of patients. Care is a fundamental aspect of human life and this has profound implications. A care ethical view is more concerned with the danger for abandonment than the danger of interference. It sees moral questions in terms of responsibilities rather than in terms of rights (Verkerk 2001). Care ethical theory encourages us to think about how we structure social practices and institutions to provide adequate care for the most vulnerable members of society and their carers (Groenhout 2004, 161). People suffering from Korsakoff’s syndrome are vulnerable, they cannot be cured and many of them cannot live on their own because they lack the ability to care for themselves. They are dependent on important others around them to support and provide for them. These others may take healthcare related decisions while patients themselves do not realize that this is necessary. However, when no support is offered the danger of abandonment is real. In this thesis the influences of the above-mentioned complexity, the different conceptualizations of concepts and the challenges this brings along, will be explored and discussed.

Aim and research questions The primary aim of this thesis is to contribute to scientific knowledge about good care during involuntary admission processes of patients suffering from Korsakoff’s syndrome by means of exploring, describing and taking into considerations moral and legal issues relevant to this practice. To this aim, the scientific literature was searched, and professionals, family carers and patients themselves were interviewed to gain insight into their views on this specific

14

involuntary admission process. The main question guiding the research for this dissertation reads as follows: What tensions, concepts and challenges play a major role in the formulation of good care in involuntary admission processes for patients suffering from Korsakoff’s syndrome? In order to answer this main question, four sub-questions were formulated: 1. What are the themes reported in scientific literature with respect to good care during involuntary admission processes from the perspectives of healthcare professionals and patients? 2. What tensions and challenges can be deduced from family carers’, patients’ and healthcare professionals’ narratives on good care during involuntary admission? 3. What significant theoretical or conceptual reflections can be made related to the quality of care during involuntary admission processes? 4. What clues or entrances can be formulated with respect to improvement of care in involuntary admission processes for patients suffering from Korsakoff’s syndrome?

Research approach and methodology The study as a whole is of a qualitative nature. This research approach was chosen as this permits obtaining a deeper understanding of the processes under investigation. It provides insight into how our respondents think, feel and reflect about involuntary admission processes. In general, qualitative research implies searching for ideas, backgrounds, motives and resistors in the language of target groups. Details of the specific methodologies and procedures used for each sub-study are described in the relevant chapters 3 through 7. A grounded theory influenced approach was chosen as the theoretical basis for this study, built on the grounded theory approach, which offers a sensitive and rigorous method for investigation. The major reason to opt for this approach was that it enables an understanding of an area which requires no preformed concepts of knowledge or reality (Jones & Alony 2011). After all, before this thesis project I was totally unfamiliar with the healthcare environment of patients suffering from Korsakoff’s syndrome. This meant that I could start with an open mind and a good amount of curiosity. Glaser and Strauss (1967) recommend researchers to enter the field without preconceived or a priori ideas of the subject area. To gain some basic knowledge, I planned a serious preparatory phase from September 2010 till May 2011. As Glaser5 said, “The initial literature is so irrelevant” and “Go out and see what they are doing”. So I went out into the field of Korsakoff’s healthcare and talked with healthcare professionals and relevant experts to gain insight into the problems they experience. To illustrate what I learned, I cite some quotes: 5

Glaser at a seminar on grounded theory influenced approach dated June 2010. Available at: http://www. youtube.com/watch?v=7S1kJ0k3yHk

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Chapter 1



A family carer told: “The family does not have the power to change the situation; you simply do not know where to go to. You cannot reach healthcare. You do not know how. If a person suffering from Korsakoff’s syndrome is not yet recognized as such, what should you do?” (interview January 21th, 2011). A patient said: “I have been admitted with a legal mandate, I am suffering from Korsakoff’s syndrome. I have lost my house and my self-esteem. I want to have a life of my own. I want to choose where, how and with whom I share my life” (from website visited on April 15th, 2010). A healthcare professional told: “Most patients are admitted voluntarily, because it is such a hassle trying to get a legal mandate” (interview October 15th, 2010). A legal professional told: “If someone does not want an admission, it is my task to be there for my client. If I see a change to overrule the admission, I will do that, even if it endangers my client’s life. I am the one to make my client’s voice heard” (interview December 2nd, 2010). These quotes illustrate some of the frustrations and tensions between the different actors who come together in the process towards an involuntary admission. As mentioned above, their knowledge and perspectives form the core of this thesis. I consulted experts of whom it may be expected that ‘by virtue of their social or scientific position had an objective view and standpoint on the subject’ (Hutjes & Buuren van 2007). Experts were identified through the network of the Dutch Korsakoff Knowledge Center6, through my own network, and through snowball or chain sampling (Patton 2002, 236) by asking each expert interviewed: “Who knows a lot about…? Whom should I talk to?”. In this preparatory phase I talked with four physicians, an official from the Ministry of Health, Welfare and Sport, a judge, two nurses, a lawyer/psychiatrist and two family members. Topics such as the relationship between law and ethics and the role of coercion in the life of patients suffering from Korsakoff’s syndrome were discussed. Besides, other sources were explored to collect information, for instance conferences, lectures, and movies. Lastly, an initial literature review was conducted. All this helped to gain understanding of relevant issues, assumptions, and theoretical frameworks within this field of research. A few issues in particular aroused my curiosity in this period. These were addressed in a general article in Dutch about the use of the terms ‘patient’ and ‘client’ in nursing homes (van den Hooff & Goossensen 2012) and in an article about the state of affairs surrounding

6

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The Dutch Korsakoff Knowledge Center aims at developing knowledge, practice, and skills in the widest possible sense for patients suffering from Korsakoff’s syndrome. More information can be found at: http:// www.korsakovkenniscentrum.nl/en

involuntary admission (van den Hooff & Goossensen 2011). The latter is presented in chapter 2 of this thesis.

Data collection After this preparatory phase, a systematic literature review was performed (chapter 3) and the data collection was officially started. All participants were selected by the method of purposeful sampling, which focuses on selecting information rich cases whose study will illuminate the questions under study (Patton 2002, 230). With the cooperation of key informants (healthcare professionals) from the network of the Dutch Korsakoff Knowledge Center, I had access to various nursing homes in the Netherlands with special units for patients suffering from Korsakoff’s syndrome. One nursing home, however, did not give permission to conduct this research due to a relocation of patients. Cases were selected with the help of healthcare professionals in the participating nursing homes. It was not possible to select the patients by myself because I had no permission to study medical files of patients. Because this research focuses at a multi-disciplinary care process, cases were selected involving an active family carer, a cooperative non-aggressive patient, and if possible a legal professional. However, it was not easy to contact legal professionals who assisted patients in the process towards an involuntary admission. For one thing, most of the key informants did not know any of these legal professionals. In general, of course, legal professionals have a short-term relationship with the patient. They are temporarily assigned by Court to assist the patient. Still, two family carers knew which legal professional assisted their relative, and gave permission to contact these legal professionals. The family carers included in this study (1) had a relative admitted to a special unit of a nursing home, (2) took care of the patient prior to the admission, and (3) were still in touch with the patient and willing to participate in this study. In all cases, the healthcare professionals involved first asked the family carer if it was all right for me to contact him or her. After this was confirmed, I phoned the family carer to make an appointment for an interview (chapter 4). The inclusion criteria used to select patients were: (1) having been diagnosed with Korsakoff’s syndrome (2) admitted to a special unit of a nursing home, (3) having a relative or another close person who was willing to participate in the study, and (4) being cared for by this person prior to the admission. Healthcare professionals selected those patients who were thought able to communicate with me without aggression (chapter 5). The table below gives an overview of all cases and participants involved as well as the interviews conducted in this study.

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Chapter 1



Healthcare professional (physician) Healthcare professional (nurse/residential supervisor) Family carer Patient Law professional Legal mandate Total interviews

Nursing Nursing Nursing home 1 Nursing home 2 Nursing home 1 Nursing home 3 Nursing home 4 home 5 home 6 Case 000 Case 001 Case 002 Case 003 Case 004 Case 007 Case 008 Case 009 Case 010 Case 005 Case 006 Total

X

1

1

X

X

1

1

1

1

1

X

7

X 1 X X no

1 1 1 1 no

1 1 1 NA no

1 1 X X no

X 1 X X yes

1 1

1 died 1 NA yes

1 1 1 1 yes

1 2 1 NA no

X 1

NA no

1 1 1 NA yes

1 yes

8 11 6 3

1

5

4

2

1

3

4

3

5

5

2

35

X = no permission to interview NA = not known interview black = did not want to participate

Table ofof cases andand participants. Table1.1.Overview Overview cases participants.

Given that the study was inductive and sought to understand and describe experiences during the admission process, individual semi-structured interviews were considered the best approach to obtain rich data. Qualitative interviewing begins with the assumption that the perspective of others is meaningful, knowable and able to be made explicit (Patton 2002, 341). This interview approach gave the opportunity to ask a range of in-depth questions, allowing the participants to describe their experiences in their own narrative (Patton 2002). All respondents received a letter containing information about the study, and explicitly stated that participation was voluntary, and that all collected material would remain anonymous to ensure privacy. Contact details of the researcher were provided to enable them to ask further information if necessary. At the beginning of the interviews, all respondents gave their written consent to participate. The interviewer noted a high level of participant cooperation in the interviews. This can partly be attributed to the open nature of the interviews, the focus on experiences as perceived by the participants, and the method, which forced the interviewer to be a very active listener (Fernández 2013). The interviews were guided by a topic list formulated by the researcher on the basis of the interviews during the preparatory phase and the initial literature study. In addition, respondents had the opportunity to raise important issues that were not mentioned during the interview. The topic list was not sent in advance to the respondents to prevent they would prepare for these subjects, thereby reducing the contribution of any spontaneous input. An advantage of this kind of semi-structured interview is that it provides an opportunity for respondents to voice their concerns (Dickson-Swift et al. 2006). All interviews were tape recorded, which allowed the interviewer to concentrate on talking strategy and making focused notes. The interview text was transcribed verbatim by the interviewer immediately after the interview session to aid recall, to ensure consistency and accuracy of reporting and thus strengthening the rigour of the study, and to adhere to ethical principles of confidentiality of the data (Beech et al. 2011). Non-verbal signals were

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included in the transcriptions (for instance ‘crying’). Family carers were interviewed at home, patients in their own room in the nursing home, healthcare professionals in their office in the nursing home, and the legal professionals in their own office.

Data analysis This section briefly describes the overall method used for data analysis. Precise descriptions of the methods are provided in the individual chapters. As mentioned above, data were collected by means of a qualitative semi-structured interview approach, which provided lengthy interview transcripts. In general it is considered a real challenge to grasp the essence and meaning of these qualitative data, and to prevent oversimplification (Dierckx de Casterlé et al. 2012, 361). The constant comparative approach was used to analyze the interview data (chapters 4 and 5). This was a two–part process: (1) a thorough preparation of the coding process, and (2) the actual coding process using a qualitative software program (Atlas.ti). As pointed out earlier, our aim was to gain insight into the complexity of involuntary admission processes into long-term care – not to develop a theory. After the first data had been collected, preparation of the coding process began. As codes and memos accumulated, the findings were discussed with the research supervisor of the university. The results of this approach are presented in chapters 4, 5 and 6.

Quality procedures To increase the quality of the research several procedures were used to increase credibility, external validity and reliability. Credibility procedures The credibility of qualitative inquiry depends, among other things, on: (1) rigorous methods for doing fieldwork that yield high-quality data that are systematically analyzed with attention to issues of credibility, and (2) the credibility of the researcher, which is dependent on training, experience, track record, status, and presentation of self (Patton 2002, 552). Regarding criterion (1) first, internal validity was promoted by using field notes and software (Atlas.ti) to categorize and analyze data. Second, the data were discussed with the research supervisors and peer reviewers of the University of Humanistic Studies, Utrecht, so as to enhance the probability that the conclusions made in this research accurately reflect what was wanted to study. Furthermore, validity of the studies was enhanced by testing of intermediate interpretations, obtaining information from various sources such as literature and interviews (sources triangulation), and comprehensively describing the research process and the analysis steps of this research (Boeije 2008). Another procedure used to enhance intern validity was data triangulation; the experiences and perspectives of a variety of participants were used to gain a more informed understanding of the phenomena studied.

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Chapter 1



Regarding criterion (2), the credibility of the researcher was enhanced by interviewing experts in the preparatory phase, attending a case that had been brought to Court, reading jurisprudence and papers of parliament, attending conferences and lectures, and following courses to get acquainted with the interview and analysis techniques. Moreover, others were invited to watch ‘over my shoulder’ during the course of this investigation. They had the possibility to reconstruct the chain of evidence used. To enable this, a detailed documentation of the collected material was perpared, an explanation of the data collection procedures used in the context of the problem, explicit justification of the translation of the data into the final conclusions of the research and reflections (Boeije 2008). External validity procedures External validity relates to generalizability and deals with the question whether findings are transferable to other contexts (Guba & Lincoln 1989, 234). External validity was tried to increase by supplying as much information as possible in the description of the sub-studies, thereby facilitating the reader to judge whether conditions match or not. The highly specific context of our respondents makes it likely that the generalizability to other contexts will be small. Reliability procedures The reliability in this study was increased by the cyclical nature of the investigation. Verification of emergent categories was incorporated into the process of data gathering and analysis, so that fit and relevance could be assured. An important feature of grounded theory is that it does not require that the researcher returns to the original participants to check if participants agree with the researcher’s interpretation of data. An one-sided picture of the involuntary admission process was avoided, however, by the use of different sources: healthcare professionals, family carers and patients. Other procedures used to increase reliability were training in interviewing techniques and verbatim transcribed interviews. The interim results, presented in sub-studies, were discussed with experts from our research group interested in this topic and during PhD meetings. The collected raw data were stored in a separate data file, to which always could be returned. Ethical considerations All empirical studies aim for informed consent, anonymity and respect for privacy/ confidentiality. Approval was obtained from the participating nursing homes and all interviewed participants received a letter containing information about the study stating that participation was voluntary and that anonymity was guaranteed. Contact details of the researchers were provided to allow participants to ask further questions. Prior to the interview a participant gave consent by filling out and signing a consent form. Written consent guarantees active and explicit consent, thus offering the highest guarantees to the

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participant (Chambliss & Russel 2010). All gathered material was processed anonymously. The participants were referred to by numbers to ensure privacy. Finally, the advice given by Fernández (2004) to grounded theorists was followed: “(1) tolerate confusion – there is no need to know a priori and no need to force the data; (2) tolerate regression – researchers might get briefly ‘lost’ before finding their way; (3) trust emerging data without worrying about justification – the data will provide the justification if the researcher adheres to the rigour of the method; (4) have someone to talk to – a grounded theory demands moments of isolation to get deep in data analysis as well as moments of consultation and discussion; (5) be open for emerging evidence that may change the way the researcher thought about the subject matter, and be willing to act on the new evidence; (6) be creative in devising new ways of obtaining and handling data, combining the approaches of others, or using a tested approach in a different way.”

Structure of the thesis This thesis has 8 chapters that represent six studies published as articles in various peerreviewed scientific journals. All studies were set up to answer the research questions as steps towards the ultimate goal of a better understanding of good care during the admission process of patients suffering from Korsakoff’s syndrome into long-term care. Chapter 2 presents an exploration of the legal possibilities and impossibilities regarding forced admissions into longterm care and of the dilemmas that may emerge seen from the healthcare professionals’ perspective. Chapter 3 presents a systematic literature review of published literature in peerreviewed journals. The aim was to explore patients’ and professionals’ views on involuntary admission and ultimately get some clues to reduce negative feelings during admission. Chapter 4 reports on a qualitative empirical study among 11 family carers. It explores their dilemmas during the care seeking process towards an involuntary admission. Chapter 5 illuminates the perspective of a small sample of patients suffering from Korsakoff’s syndrome and sheds light on the way they see, interpret and respond to the care they receive. Chapter 6 reflects on a group discussion with healthcare professionals on the issue of patient decision making competence in the context of day-to-day long-term care. Chapter 7 brings out the different perspectives on ‘doing good’ and the responsibilities of the different actors during involuntary admission processes. In chapter 8 the theoretical and practical implications of all studies are summarized and discussed, and the strengths and limitations of the research method are discussed.

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References American Psychiatric Association (20000. Diagnostic and Statistical Manual of Mental Disorders, 4th, text revised ed. Washington, DC: American Psychiatric Association. Beauchamp, T.L. & Childress, J.F. (2013). Principles of biomedical ethics. Seventh edition. New York/ Oxford: Oxford University Press. Beech A, Arber A, & Faithfull S. (2011). Restoring a Sense of Wellness following Colerectaral Cancer: a Grounded Theory. Journal of Advanced Nursing. 68(5): 1134-1144. Boeije, H. (2008) Analyseren in kwalitatief onderzoek. Denken en doen. [Analyze in qualitative research. Thinking and Doing.] Amsterdam: Boom Lemma. Chambliss, D.F. & Russel, K. (2010). Making Sense of the Social World: Methods of Investigation, 3rd ed. Thousand Oaks, CA: PineForge Press. Christman, J. (2004). Relational autonomy, liberal individualism, and the social constitution of selves. Philosophical Studies. 117(1-2): 143-164. Day, E., Bentham, P., Callaghan, R., Kuruvilla, T., & George, S. (2013). Thiamine for Wernicke-Korsakoff Syndrome in People at Risk from Alcohol Abuse (Review). The Cochrane Collaboration (7). Chichester, John Wiley & Sons, Ltd.: The Cochrane Library. Delmar, C. (2013). The interplay between autonomy and dignity:summarizing patients voices. Medicine, Health Care and Philosophy. 16(4): 975-981. Dickson-Swift V, James EL, Kippen S, & Liamputtong P. (2006). Blurring Boundaries in Qualitatieve Health Research on Sensitive Topics. Qualitative Health Research, 16(6): 853-871. Dierckx de Casterlé, B., Gastmans, C., Bryon, E., & Denier, Y. (2012). QUAGOL: A guide for qualitative data analysis. International Journal of Nursing Studies. 49(3): 360-371. Draper, B., Karmel, R., Gibson, D., Peut, A., & Anderson, P. (2011). Alcohol-related cognitive impairment in New South Wales hospital patients aged 50 years and over. Australian and New Zealand Journal of Psychiatry. 45(11): 985-992. Fernández, W.D. (2004). The grounded theory method and case study data in IS research: issues and design. In: Information System Foundations: Constructing and Criticising, D. N. Hart & S. Gregor, eds., Canberra: Australian National University, pp. 43-59. Galvin, R., Brathen, G., Ivashynka, A., Hillbom, M., Tanasescu, R., & Leone, M.A. (2010). EFNS guidelines for diagnosis, therapy and prevention of Wernicke encephalopathy. European Journal of Neurology. 17(12): 1408-1418. Glaser, B.G. & Strauss, A.L. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine Publishing Company. Goossensen, A., Arts, N. J., & Beltman, M. (2007). Zorgprogramma Korsakov in het verpleeghuis ‘Mij mankeert niks’ [Care Program Korsakoff in the Nursing Home: Nothing’s Wrong with Me]. Rotterdam: Korsakov Knowlegde Center. Groenhout, R.E. (2004). Connected Lives: Human Nature and an Ethics of Care. Lanham: Rowman and Littlefield Publishers INC. Guba E, Lincoln G. (1989). Fourth Generation Evaluation. Beverly Hills: Sage. Hall, W., Farrell, M. & Carter, A. (2014). Compulsory treatment of addiction in patient’s best interests: More rigorous evaluations are essential. Drug and Alcohol Review. 33(May): 268-271.

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Harper, C.G., Giles, M. & Finlay-Jones, R. (1986). Clinical signs in the Wernicke-Korsakoff complex: a retrospective analysis of 131 cases diagnosed at necropsy. Journal of Neurology, Neurosurgery & Psychiatry. 49(4): 341-345. Hendriks, A. (2014). Recht op leven en recht op een zelfgekozen dood: een toetsing van de Nederlandse Euthansiewet aan het EVRM [Right to life and right to a self-chosen death: a review of the Dutch Law to the ECHR]. NTM/NJCM-Bull. 39(2): 151-181. Hutjes, J.M. & van Buuren, J.A. (2007). De gevalsstudie, Strategie van kwalitatief onderzoek. [Case study, Strategy of Qualitative inquiry]. 3Ed. Meppel/Amsterdam/Heerlen: Boom/Open Universiteit. Jones, M. & Alony, I. (2011). Guiding the Use of Grounded theory in Doctoral Studies - An Example for the Australian Film Industry. International Journal of Doctoral Studies. 6(95): 114. KNMG (2007). Medical professionalism, Utrecht: KNMG. Kolb, B. & Whishaw, I.Q. (1985). Fundamentals of Human Neuropsychology, 2 ed. New York: W.H. Freeman and Company. Kopelman, M.D., Thomson, A., Guerrini, I., & Marshal, E.J. (2009). The Korsakoff Syndrome: Clinical Aspects, Psychology and Treatment. Alcohol & Alcoholism. 44(4): 148-154. Oslin, D., Atkinson, R.M., Smith, D.M., & Hendrie, H. (1998). Alcohol related dementia: proposed clinical criteria. International Journal of Geriatric Psychiatry. 13(4): 203-212. Patton, M.Q. (2002). Qualitative Research & Evaluation Methods, 3ed. Thousand Oaks, London, New Delhi: Sage Publications. Post van der, L., Mulder, C.L., Bernardt, C.M.L., Schoevers, R.A., Beekman, A.T.F., & Dekker, J. (2009). Involuntary admission of emergency psychiatric patients: report from the Amsterdam Study of Acute Psychiatry. Psychiatric Services. 60(11): 1543-1546. Schepers, J.P., Koopmans, R.T., & Bor, J.H. (2000). Patients with Korsakoff’s syndrome in a nursing home: characteristics and comorbidity. Tijdschrift Voor Gerontologie en Geriatrie. 31: 113-118. Schermer, M.H.N. (2001). The different faces of autonomy. A study on patient autonomy in ethical theory and hospital practice (dissertation). Amsterdam: VU University. Touwen, D.P. (2008). Voor een ander. Beslissingsverantwoordelijkheden in de verpleeghuisgeneeskunde [For another person. Decision responsibilities in nursing home care] (dissertation). Leiden: Aksant. Van den Hooff, S.L. & Goossensen, A. (2011). Zorgverleners in spagaat bij opname van patienten zonder ziekte-inzicht [Healthcare professionals’ difficult balancing act in admission of patients suffering from Korsakoff’s syndrome into long-term care]. Tijdschrift voor Gezondheidszorg en Ethiek. 21(4): 107-113. Van den Hooff, S.L. & Goossensen, A. (2012). Cliënt of patiënt? De betekenis van aanspreektermen [Client or Patient? The meaning of contact terms]. Denkbeeld. 24 (juni): 6-8. Van Heijst, A. (2011). Professional Loving Care. An ethical view of the healthcare sector. Herent: N.V. Peeters S.A. Van de Wetering, F. (2008). Toekomstscenario’s voor de toepassing van de Wet Bijzondere Opnamen Psychiatrische Ziekenhuizen (Bopz) [Future scenarios for the implementation of the the Dutch Compulsory Admission Act (BOPZ)]. Rotterdam: Erasmus University. Verkerk, M.A. (2001). The care perspective and autonomy. Medicine, Health Care and Philosophy. 4(3): 289-294.

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General Introduction Victor, M., Adams, R.D., & Collins, G.H. (1989). The Wernicke-Korsakoff Syndrome and Related Neurological Disorders due to Alcoholism and Malnutrition. Philadelphia: PA. F.A. Davis. Welie, S.P.K. (2008). Criteria for assessment of patient competence. A conceptual analysis from the legal, psychological and ethical perspectives (dissertation). Maastricht: Maastricht University. Wijnia, J.W., van de Wetering, B.J.M., Zwart, E., Nieuwenhuis, K.G.A., & Goossensen, M.A. (2012). Evolution of Wernicke-Korsakoff Syndrome in Self-Neglecting Alcoholics: Priliminary Results of Relation with Wernicke-Delirium and Diabetes Mellitus. The American Journal on Addictions. 21: 104-110.

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Chapter 2 Healthcare professionals’ difficult balancing act in admission of patients suffering from Korsakoff’s syndrome into long-term care

This chapter is based on the published article: van den Hooff, S.L. & Goossensen, A. (2011). Zorgverleners in spagaat bij opname van patiënten zonder ziekte-inzicht [in Dutch]. Tijdschrift voor Gezondheidszorg & Ethiek. 21(4): 107-113.

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Healthcare professionals’ difficult balancing act

Summary This article provides an overview of the legal possibilities and impossibilities regarding forced admission into a nursing home (long-term care) of patients without insight into their own illness in general and suffering from Korsakoff’s syndrome in particular. It focuses on the choices, dilemmas and consequences with which the healthcare professionals involved are confronted. They often need to perform a difficult balancing act between the criteria of Dutch legislation and moral obligations to provide good care. Acting in the best interest of the patient always should come first.

Textbox 1. Korsakoff’s syndrome The immediate cause of Korsakoff’s syndrome is a serious lack of thiamine (vitamin B1). In the Netherlands, this disease occurs almost only in alcoholics due to a combination of factors: self-neglect, prolonged bad food, frequent vomiting or even completely stop eating (Arts 2004, 5). Characteristics of this syndrome are: memory disorders, confabulate, orientation problems in time and space, no awareness of illness, uncertain and afraid of failure and central executive dysfunction (Arts 2004, 15-18).

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Healthcare professionals occasionally need to admit patients who lack insight in or have reduced awareness of their illness, such as people suffering from Korsakoff’s syndrome. Problems arise when legal criteria forbid an admission, while healthcare professionals assume that an admission will be beneficial for the person’s health. Involuntary admissions are possibly when criteria laid down in the Dutch Compulsory Admission Act (BOPZ) are met: there should be considerable danger for the person himself or for others due to the person’s psychiatric illness (Hoekstra 1996). Involuntary admission cannot be arranged when these criteria are not met. This may conflict with the healthcare professionals’ medical responsibility to contribute to the physical and mental wellbeing of their patients (Sutorius 2011, 593). Patients also have their own responsibility in healthcare, based on the concept of autonomy. They are considered free, self-governing agents who carry final responsibility for their own health. Patients are entitled to choose for themselves what norms and values they want to pursue, are free to make decisions that are un-coerced and best express the outcomes of their own deliberative process (Christman 2004). In practice, this may lead to complex situations. This article gives an overview of the Dutch admission possibilities into long-term care and the choices and dilemmas facing the healthcare professionals involved in this process. We will first present the case of a patient who lacks awareness of illness: Mr. D. who is suffering from Korsakoff’s syndrome. The definition and characteristics of this syndrome are given in textbox 1. Of course, there are other conditions associated with lack of insight into one’s own illness, such as antisocial personality disorder (van Hasselt 2010, 92), schizophrenia, bipolar disorder (Pijnenborg 2010, 826) or dementia.

Case Mr. D. is chronically addicted to alcohol, is apathetic, has memory problems and severely neglects himself. More than once his family members had found him in a miserable state in his house. A family carer told: “Half-dressed, in his own urine, fallen in a strange position so that he could hardly get up”. At this stage, healthcare professionals could not yet admit Mr. D., first a file had to be compiled. A healthcare professional explained: “We first have to collect instances of these incidents before a legal mandate can be requested”. In the meanwhile no care was given and Mr. D. was mentally and physically deteriorating and his house became more and more filthy. The family carer reported: “Everywhere paper, newspapers, filth, stench of alcohol and mice”. Family carers felt responsible and did as much as possible to keep the situation livable. After a collapse Mr. D. ended up in a hospital, where he physically recovered. Yet, no care was offered for the existing alcohol problem, either because that was not the indication for hospital admission or the diagnosis was missed (Wijnia & Nieuwenhuis 2011). After discharge from hospital, Mr. D. went home without further care. He continued his old life characterized

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Chapter 2

Introduction


by alcohol abuse, further deterioration of mental and physical health, and dignity loss. He still denied that there were any problems. After a second hospitalization, Mr. D. was adequately admitted to an alcohol rehabilitation clinic. The family told: “We were lucky, a doctor who was unknown with the history of Mr. D. referred him to a rehabilitation clinic. Otherwise this probably would not have happened”. After a period of detoxification, Mr. D. was diagnosed with Korsakoff’s syndrome and could be admitted into a nursing home with a specialized unit for patients suffering from Korsakoff’s syndrome. However, Mr. D. had to give his permission for this admission. Due to his lack of awareness of illness, he recently had declared that he did not want to be admitted into long-term care. During the intake procedure, in the presence of the family carer and the assisted living supervisor, the doctor verified the patient’s consent by asking: “Mr. D., you do want to be admitted, right?” D. answered: “Yes.” The doctor said: “Everybody heard the answer? Sir wants to be admitted”. Afterwards in an interview, the family carer told that this consent was manipulated, but “this was the only way to help”. Mr.’s admission was on a ‘voluntary’ basis. On the face of it, this way of handling the situation leaves us with a somewhat ‘uneasy’ feeling. What is happening here, and how can we understand this situation? Is it in order what has happened here? The fact is that this patient formally was voluntarily admitted. Nevertheless, most patients who lack insight into their illness will rarely seek or accept care voluntarily. It follows, logically, that there should be no voluntarily admitted patients suffering from Korsakoff’s syndrome. Nothing is farther from the truth however; many patients suffering from Korsakoff’s syndrome are ‘voluntarily’ admitted into long-term care in the Netherlands. In a small sample of four nursing homes, in total more than half (respectively: 60%, 96%, 40% and 71% per institution) of the patients (n = 254) suffering from Korsakoff’s syndrome had been voluntarily admitted. These patients stay in long-term care units because their brain damage is not curable; they are in a stable condition in which permanent care is necessary. Of course, in view of the long-term deprivation of liberty it is extremely important that admissions into long-term care are handled delicately. A long-term care admission plays a decisive role in patients’ quality of life in the future. How was the voluntary admission of Mr. D. established? And why was chosen for a voluntary admission? Dutch healthcare law identifies three ways in which a patient can be admitted into a long-term care residence such as a nursing home, which will be briefly described below.

Admission possibilities Involuntary admission The situation in which patients oppose against admission, but are still admitted, is referred to as involuntary admissions. In the Netherlands, the Compulsory Admission Act (BOPZ) is applicable in case of an involuntary admission to general psychiatric hospitals, but also in

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case of involuntary admission to psychiatric departments of general and teaching hospitals, to nursing homes and to institutions for the intellectually disabled. The BOPZ assumes the ‘willingness criterion’: admission without ‘the necessary willingness’ of a patient requires the authorisation of a Court or, if there is acute danger, an emergency admission by a provisional detention. This Act dictates three criteria governing compulsory admission. Firstly, the patient does not agree with admission. Secondly, there is danger or potential danger to a patient’s safety or the safety of others as a consequence of the mental disorder diagnosed by a psychiatrist. Thirdly, there are no reasonable alternatives for the compulsory admission (the last resort principle). A definition of ‘danger’ is given in article 1 of the BOPZ (see Textbox 2). The Act defines a mental disorder as inadequate development or pathological disorder of the mental capacities (art 1 par 1 sub d BOPZ), diagnosed by a ‘specialist doctor’. The explanatory memorandum of the legislative proposal (Wet vGGZ), the intended successor of the BOPZ, which is currently being addressed in the House of Representatives7, stipulates that ‘a specialist doctor’ typically refers to a psychiatrist. However, under certain circumstances it is possible that an addiction disorder specialist or specialist in the care for the mentally disabled can act as such (Kamerstukken II, 2009-2010, 32 399, nr. 3, 32).

Textbox 2. What constitutes (potential) danger according to the law? (art 1 par 1 sub f BOPZ) — — — — — — — —

The danger that you will try to take your own life or seriously injure yourself. The danger that you will lose touch with society completely. The danger that you will seriously neglect yourself. The danger that others will become aggressive in response to your problem behaviour. The danger that you are threatening to take someone’s life or cause serious injury. If someone else’s mental health is in jeopardy. The danger that you will neglect someone who has been entrusted to your care. You could present a danger to the safety of other people or their property.

In Court, the judge almost always follows the medical expert’s view on whether or not, in this specific case, a mental disorder exists. Nevertheless, the judge finally makes the ruling (Keurentjes 2007, 60). Jurisprudence of the Supreme Court (HR September 23, 2005) shows that an alcohol addiction cannot lead to the application of the BOPZ unless the person has other mental disorders as well. These other mental disorders should be of such severity that thinking, feeling, willing, judging and acting purposefully are severely influenced, and the caused danger cannot be allocated to the patient, because the disorder predominantly governed the dangerous actions of the patient. It is the task of the medical expert (psychiatrist) to demonstrate the above. A verdict of the Court in The Hague on 1 July 2008 (LJN: B19984) 7

http://www.eerstekamer.nl/wetsvoorstel/32399_wet_verplichte_geestelijke

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rejected the request for a legal mandate because of the absence of other mental disorders besides the Korsakoff’s syndrome. Generally, the presence of Korsakoff’s syndrome is insufficient to consider a disturbance in mental capacities (see also HR October 3, 2008, conclusion by FF Langemeijer LLM). ‘No commitment - no objection’ admission No court order is required for patients who do not show the necessary willingness and do not resist against the admission (article 60 par 1 BOPZ, see textbox 3). In these cases the BOPZ dictates a procedure through the Center of Indications for Care (In Dutch: Centrum Indicatiestelling Zorg; CIZ). The CIZ independently assesses the necessity of an admission under Article 60 BOPZ. When someone cannot provide for himself anymore an admission may be necessary. A CIZ assessor will ask, in writing or in person if the patient objects to an admission. Objections must be factually understood here. Every expression, even non-verbal, should be considered as such (Leenen et al. 2007, 308). The final report of the CIZ describes: 1. the nature of the disorder of the mental capacities; 2. circumstances that cannot safeguard a living outside a long-term care institution; 3. the way how the patient was informed of his rights to make objections to the admission, and his responses to this information. If the CIZ assessor concludes that admission is necessary, the patient receives the required article 60 BOPZ indication.

Textbox 3. Article 60 BOPZ 1. Admission and stay in an institution for the mentally disables or nursing home of a person who is twelve years or older and does not show the necessary willingness on the matter [...] will only take place if a commission as meant in the third paragraph, deems admission necessary.

Voluntarily admission Patients may be admitted voluntarily if they show the ‘necessary willingness’. If they should lack willingness, the BOPZ requires a legal mandate. If patients show this willingness the Medical Treatment Contract Act (WGBO), which is part of the Dutch Civil Code (CC), is applicable. The WGBO addresses actions in the area of medical treatment, and nursing home care is included in the context of this treatment. A voluntary admission requires a treatment contract. However, the concept of ‘necessary willingness’ is not easy to define. If patients are able to make a statement about their willingness for an admission, it is still very difficult to objectify this statement (Hoekstra 1996). Therefore the question has been raised whether lack of insight into illness automatically leads to the assumption that one will never show any willingness for long-term care admission. This concept of willingness to admission must be distinguished from the concept of willingness to treatment. The BOPZ is clear on this point: an admission does not simply legitimize treatment (Keurentjes 2007, 58). International law, for instance EU directives

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(Welie et al. 2005), UN conventions, such as the UN Principles for the Protection of Persons with Mental Illness (MI principles, UN A/RES/46/119, 1991) and the WHO Resource Book (2005), address the requirements for a voluntary admission (Legemaate et al. 2007, 27-30). A voluntary admission is only possible with the free and informed consent of the patient (WHO 2005, 43). In 2002 the European Court of Human Rights (ECHR) ruled on a case of the admission of a woman suffering from dementia into a nursing home (ECHR 26 February 2002). The woman’s attitude on admission was ambivalent: consent and resistance alternated. The Court considered that there were some circumstances that were important in this case: the fact that the woman was not really locked up, that she could move freely to some extent, and that she was allowed to maintain her social contacts with the outside world. Under these circumstances, the Court concluded by majority vote that there was no deprivation of freedom within the meaning of Article 5 ECHR (Legemaate et al. 2007, 28). In another case (ECHR October 5, 2004), the Court decided that there can be deprivation of freedom even if an institution has an open door policy. In this particular case, the patient was “under continuous supervision and control and was not free to leave” (Legemaate et al. 2007, 29). In these two rulings the ECHR emphasises the importance of the regime under which patients are admitted. If patients cannot simply leave the institution, a deprivation of freedom is likely. In contrast, patients who still have a large amount of freedom, even if they have raised objections to their admission, may not be seen as being deprived from their freedom. In conclusion, two criteria must be taken into account in the assessment of the possibility of voluntary admission to an institution within the framework of the WGBO, namely one’s own willingness and the degree of freedom in the institution.

Considerations of the healthcare professional Returning to our case of Mr. D. and the healthcare professional’s option to ‘force’ a voluntary admission. What are the reasons to opt for a voluntary admission of Mr. D.? The healthcare professional felt that an admission was his moral obligation. He realized that if Mr. D. did not get the care he needed, Mr. D. would quickly resume his old lifestyle with the corresponding alcohol abuse and neglect. Suffering from Korsakoff’s syndrome also meant a high risk of death. The healthcare professional wanted to offer care by admitting Mr. D. in the institution. But is an official legal involuntary admission possible? Probably the danger criterion can be met: Mr. D. will neglect himself, languish, weaken and possibly drink himself to death if he does not get any help. However, it is unlikely that the Court will decide that there is a mental disorder. The previously mentioned case-law (HR October 3, 2008) showed that the presence of Korsakoff’s syndrome generally is insufficient to consider a mental disorder. The healthcare professional in this particular case cannot demonstrate that the Korsakoff’s syndrome is associated with any other mental disorder. So he concluded for himself that it is unlikely that a legal mandate will be awarded. Thus, in view of his patient’s welfare he decided not to request a legal mandate.

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Is it possible to realize a ‘no commitment - no objection’ admission (article 60 BOPZ)? Does Mr. D. show any willingness or any objections? When asked, Mr. D. always said that he did not want an admission, which can be attributed to his lack of insight into his illness. It is most likely that D. will oppose to an admission when asked by a CIZ assessor. The healthcare professional concluded that an admission on the basis of article 60 BOPZ in this situation probably will not work and is not the right option to follow. What to do next? In this situation, in the healthcare professional’s opinion, no adequate legal solutions are available. The only admission possibility that remains is a voluntary admission. The healthcare professional wonders if Mr. D. shows sufficient willingness and whether the degree of freedom in the nursing home is enough to warrant a voluntary admission. Regarding the latter: Mr. D. has a certain degree of freedom of movement in the current setting. Mr. D. is not placed in a locked ward and he can freely move around in the institutional grounds. Furthermore, Mr. D. is allowed to maintain his social contacts in the outside world and he is allowed to leave the institution if he wishes (in accordance with ECHR October 5, 2002). Due to his illness he most probably will not leave the institution: a lack of initiative and apathy will prevent him from taking effective actions. Next, the healthcare professional checks the willingness criterion. In other words, is Mr. D. showing sufficient willingness to be admitted? In this case, Mr. D. gave ‘permission’ for a voluntary admission after manipulation by the healthcare professional. Or is it rather ‘coercion’ in this situation? And if so, to what extent does this affect the voluntary admission? If someone is affected in such a way that he has less freedom of choice, we can speak of coercion (Schermer 2003, 33). Coercion may take various forms, which various degrees of reduction of freedom of choice to varying extents: 1. manipulation of options (the prospect of a reward or threatening with sanctions); 2. manipulation of information (twisting or withholding information, giving wrong or deliberately one-sided information); and 3. psychological manipulation (flattery, anticipate on guilt feelings). Mr. D. was not sufficiently informed during the admission procedure: only one question needed to be answered. No alternatives were offered and it was not fully explained what the admission exactly entailed. We can conclude that this was a case of coercion in this situation. What does Dutch law say about this situation? The WGBO (article 7:448 par 3 WGBO) states that healthcare professionals may withhold information about proposed research or proposed treatment if they judge that the information will cause ‘manifestly serious harm’ (in Dutch: ‘kennelijk ernstig nadeel’) to their patient, for instance suicide (Keurentjes 2007, 53). This criterion might give healthcare professionals an entry for justifying the application of coercion to realize a voluntary admission. It is evident that Mr. D. will die or seriously neglect himself if he goes back home. However, the criterion ‘manifestly serious harm’ in the WGBO refers to the provision of information about treatment and not about admission. In this case, the healthcare professional is aware that he moves on thin ice by using coercion during this ‘voluntary’ admission.

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The above case illustrates a well-known practice in the provision of care for patients suffering from Korsakoff’s syndrome. Of course it is clumsy to infringe the autonomy of Mr. D. in this way. Is it necessary to act in this way? Healthcare professionals meet needy persons who resist care. Patients suffering from Korsakoff’s syndrome fail to reflect on their own behaviour, they blame others for getting them in this situation. The dilemma of healthcare professionals consists of both wanting to respect the autonomy of vulnerable persons and on the other hand to achieve good care and prevent damage. Healthcare professionals have a strong bias to do well, not to harm and to respect autonomy (Van Heijst 2008, 130). In this situation autonomy means the choice to drink alcohol, even if this might lead to death. It is not easy for those who witness it to take this for granted. In these situations, respecting a person’s autonomy is not always possible. The question always will be whether healthcare professionals tend to impose their own values and standards on their patients. Well-intentioned actions and approaches may not match their patients and add suffering. The result may be that vulnerable others feel that they do not matter anymore and feel worthless (Baart & Grypdonck 2008, 36; Van Heijst 2008, 61). It is important to take into account patients’ own insights, interests and feelings and involve them as much as possible in consultations on admission into long-term care. The most important facet of this situation is whether Mr. D., given his illness, is able to foresee the consequences of his behaviour and habits. Is his continued drinking and not wanting a treatment a free choice or a consequence of the brain damage? And would it be possible to find out on the basis of a conversation with him? And if not, how to proceed? If a patient is sufficiently clear of mind, his opinions and values naturally must be respected. Taking into account that Mr. D. is suffering from Korsakoff’s syndrome, will he be mentally competent enough to make this kind of decisions? Or is he struggling to oversee the consequences of his actions and to make informed decisions —and should therefore be considered incompetent? Tensions may arise when Mr. D.’s personal judgment, the values he relied on in his life, are not respected. Even if Mr. D. does not oversee the consequences of his admission, he probably feels that decisions are made for and about him. The fact that Dutch legislation does not always allow compulsory care for this patient group and that healthcare professionals still opt for some kind of forced admission, requires high precision and sensitivity of healthcare professionals. Deep human needs of the vulnerable person are involved, such as being seen as a human being versus being seen as a thing, and feeling appreciated versus feeling worthless (Timmermann et al. 2011, 15). Such human values cannot be separated from patients’ need for care. Healthcare professionals have a moral duty to connect to vulnerable mentally competent or incompetent others. This calls for interpretation, reflection and consideration (Timmermann et al. 2011, 15) especially in situations where law does not provide sufficient guidance.

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Chapter 2

Ethical perspective


Conclusion A solution to the identified dilemma between autonomy and good care during admission into long-term care could be found by considerate conversations with the patient in which healthcare professionals display great sensitivity. Importantly, they should weigh up norms, values and personal judgment of the patient and estimate on which issues the patient can or cannot see the consequences. This applies to conversations in which admission is discussed, but also to situations after admission. In addition, it is necessary to pursue openness and clarity in healthcare decisions of patients without insight into their illness. Currently, patients are depending on the moral judgments of healthcare professionals and the risk they dare to take. Healthcare professionals who dare take the risk to impose an admission and therefore may act contrary to the law, help, but must infringe the autonomy of the patient. How carefully do healthcare professionals make these decisions? Who controls them? Other healthcare professionals may have to think twice before they admit a patient. They argue that the law does not allow the provision of care to these patients. These more cautious healthcare professionals prefer to avoid any legal sanction resulting from not obeying the law (van Heijst 2005, 149). As a result, a patient suffering from Korsakoff’s syndrome whose case is handled by one of these more cautious healthcare professionals will not receive care and probably will have a poor outcome. To end this unwanted variation in decisions surrounding admissions it is desirable to achieve better alignment of legislation for the group of patients without insight into their own illness, expanding the possibilities of providing care to this group, and to reflect on the actions of healthcare professionals. The authors hope that the legislative proposal8 of the new Mental Health Act (Wet vGGZ) will give an answer to these questions. Future legislation seems to increase the opportunities for admission for patients suffering from Korsakoff’s syndrome. In the present proposal addiction to alcohol and drugs falls within the scope of the Act (p.15).

8

34

Parliamentary document 2009/10, 32.399, nr.3


References (in Dutch)

Arts, K. (2004). Het syndroom van Korsakov. Een uitgave van het Landelijk Platform Korsakov. Nijmegen: F.E. Mac Donald. Baart A. & Grypdonck, M. (2008). Verpleegkunde en presentie. Den Haag: Lemma. Hoekstra R., Ronhaar P.K.J. en Laport R.B. (1996). Het grijze gebied tussen gedwongen en vrijwillige opnames. Een verkenning vanuit de dagelijkse praktijk van de acute psychiatrie. Tijdschrift voor Psychiatrie. 38(10). Keurentjes R.B.M. (2007). De Wet Bopz. In: B.C.M. Raes & F.A.M. Bakker (red.), De psychiatrie in het Nederlands recht. Deventer: Kluwer, pp 57-80. Leenen, H.J.J., Gevers. J.K.N. & Legemaate, J. (2007). Handboek gezondheidsrecht. Deel I Rechten van mensen in de gezondheidszorg. Houten: Bohn Stafleu van Loghum. Legemaate J., Frederiks B.J.M. & Roode de R.P. (2007). Derde evaluatie van de Wet Bijzondere opnemingen in psychiatrische ziekenhuizen, deel 7 Internationale ontwikkelingen. Ministerie van Volksgezondheid, Welzijn en Sport. Pijnenborg G.H.M. & Aleman A. (2010). Ziekte-inzicht bij mensen met schizofrenie: theoretische inzichten en voorstel voor behandeling. Tijdschrift voor Psychiatrie. 52(12): 825-835. Schermer M.H.N. (2003.) Drang en informele dwang in de zorg. Signalering Ethiek en Gezondheid, pp. 32-46. Sutorius E. (2011). Legitimatie van medisch handelen. Ars Aequi. 60(7/8): 593-599. Timmermann M., Tijmense A., Wolters F. & Goossensen A. (2011). Omgaan met wils(on)bekwaamheid in de zorg aan patiënten. Tussenrapport RAAK project. Lectoraat Verslavingszorg, Den Haag: Hogeschool Inholland. Touwen D.P. (2008). Voor een ander. Beslissingsverantwoordelijkheden in de verpleeghuisgeneeskunde (dissertatie). Amsterdam: Aksant. United Nations Principles for protection of persons with Mental Illness and the improvement of Mental Health Care, 1991. Van Hasselt M. (2010). Drang vergroot autonomie in TBS. Tijdschrift voor Gezondheidszorg & Ethiek, 20(3): 90-94. Van Heijst A. (2005). Menslievende zorg. Een ethische kijk op professionaliteit. Kampen: Klement. Van Heijst A. (2008). Iemand zien staan. Zorgethiek over erkenning. Kampen: Klement. World Health Organization (WHO) (2005). Resource Book on mental health, human rights and legislation. Geneva: WHO. Wijnia, J.W. & Nieuwenhuis, K.G.A. (2011). Difficulties in identifying Wernicke-delirium. European Journal of Internal Medicine. 22, e160-e161

35

Chapter 2

Arends L.A.P. (2001). Onderzoek ‘Implementatie Wet Bopz in verzorgingshuizen’ Eindrapportage. Rotterdam: Arcares.

Chapter 3 How to increase quality of care during coercive admission? A review of literature.

This chapter is based on the published article: van den Hooff, S.L. & Goossensen, A. (2013). How to increase quality of care during coercive admission? A review of literature. Scandinavian Journal of Caring Sciences. 28(3): 425-434.

37

How to increase quality of care during coercive admission?

Abstract Background: Involuntary admission is still rising in numbers and this procedure is widely discussed from an ethical point of view. A common ethical dilemma is the tension between individual freedom and the need to protect the patient. Patients who are coerced during admission processes often report negative feelings or trauma. Studying quality of care issues is essential for providing good care during coercive admission. Aim: This study aims to explore themes from patients’ and healthcare professionals’ perspectives in scientific literature on involuntary admission. Methods: English articles were searched in Academic Search Elite, Cinahl, Medline, PubMed and Social Science Journals for the period 1995–2012. Additional studies were identified using the National Centre for Biotechnology Information (NCBI). Search terms included involuntary, hospitalization, ethical, admission, nursing home, coercion and factor. Ultimately, twenty-two articles out of 1216 citations were included and analyzed. Results and conclusion: Articles could be distinguished into those describing themes from the patients’ perspective and those describing themes from the healthcare professionals’ perspective. Findings show that most patients’ experiences can be traced back to one core experience: either being listened to or not listened to. When patients’ experience they are genuinely being listened to, they feel more respected as a human being. The challenge for healthcare professionals seems to be to explicitly pay attention and stay in touch with patients’ emotional struggles while at the same time making the necessarily decision to admit the patient to prevent harm. Quality of care during coercive admission improves when professionals are able to do justice to both inside and outside perspectives simultaneously.

38


Involuntary hospitalization remains a widely discussed subject from an ethical point of view. The dilemmas between individual freedom of choice, autonomy and the need to protect the patient to control damage are evident (Sulkunen, Rantala & Määttä 2004). Many mental healthcare patients need to be coerced into admission due to their mental state in which they cause danger or damage to themselves or others. An increasing rate of involuntary admissions has been described in the Netherlands (van der Post et al. 2009), England (Keown et al. 2011) and other European countries. In England, the increasing rate has been associated with a reduction in provision of beds for people with mental illness since the 1980s, due to policies to deinstitutionalize the care of people with mental illness. That study indicated that the closure of two mental illness beds was associated with one additional civil involuntary admission in the subsequent year due to delays in planned admissions, which may lead to crises requiring involuntary admission (Keown et al. 2011). Also in the Netherlands, the numbers of emergency involuntary admissions rose by 16% (from 40.2 to 46.5 per 100 000 total population) during the years 2000–2004. During this period, there were no changes in mental healthcare law (Mulder et al. 2008). In the Netherlands, the Dutch Compulsory Admission Act (BOPZ) is the frame of reference in case of an involuntary admission. According to this act, there are three criteria governing compulsory admission: patients do not agree with admission, they present a danger to themselves and others, and the ‘last resort’ principle applies; in other words, there is no reasonable alternative (Legemaate 2008). If these criteria are met, a legal mandate is issued by the Court. The Netherlands government is currently working on new mental healthcare legislation. The requirements for an involuntary admission will be adjusted. The danger criterion will be replaced by the criterion of significant risk of serious harm, which fits better with the internationally used criteria. A formal legal status does not always reflect patients’ actual attitudes and expectations of perceived coercion (Hoge et al. 1997; Iversen et al. 2002). Even without a formal legal status the patient can feel coerced. Involuntary hospitalization is often experienced negatively by patients. Looking back, they often evaluate that hospitalization was unnecessary, even harmful, and brought no improvement (Sibitz et al. 2011; Bonsack & Borgeat 2005). Coercion in psychiatric care involves ethical tensions between the need to respect patients’ autonomy and the obligation to help or protect patients. Ethical issues surrounding the justification, legal regulation and best practice of compulsory interventions in mental healthcare have been widely questioned and discussed (Katsakou & Priebe 2007). Jankovic et al. (2011) found that a substantial proportion of patients did not agree retrospectively with the appropriateness of the admission, which sheds a critical light on the ethical justification of involuntary hospital admission (Katsakou & Priebe 2006). Katsakou and Priebe (2007) presented a review of five qualitative studies and described patients’ experiences in different stages of involuntary care. This study offered some insight into patients’ experiences and perceived outcomes of involuntary care. The authors 39

Chapter 3

Introduction


concluded that when patients feel that healthcare professionals genuinely care about them and offer them some degree of participation in their treatment, interventions are evaluated less negatively. People’s sense of self value is less negatively affected in this way. Genuine caring was understood to mean that healthcare professionals are honestly interested in the patient’s well-being and are trying to understand how vulnerable and insecure patients might be. The rationale for our literature review is rooted in a project on patients suffering from Korsakoff’s syndrome. These patients lack insight into their own condition and are not aware that they need care (Kolb & Whishaw 1985; Gerridzen & Adema 2011). This produces an additional tension during involuntary admissions between the need to respect patients’ autonomy and the need to prevent damage in these patients (Monahan et al. 1995; Hoyer 2008; Wynn et al. 2007). Ultimately, they are likely to drink themselves to death when not involuntary admitted into long-term care institutions. The main question of this review is ‘Which quality themes are reported by patients and healthcare professionals with regard to involuntary admission?’

Aim The aim of this study was to explore patients’ and healthcare professionals’ perspectives on involuntary admission.

Methodology A stepwise approach was applied: specification of the assessment problem, formulation of inclusion and exclusion criteria, defining a search, the execution of the literature search, selection of articles based on the criteria, and analysis of the material. Data sources and keywords Five different international online bibliographic databases were searched: Academic Search Elite, Cinahl, Medline, PubMed and Social Science Journals. The keywords used in the search were ‘involuntary’, ‘hospitalization’, ‘ethical’, ‘admission’, ‘nursing home’, ‘coercion’ and ‘factor’. In addition, new results from the National Centre for Biotechnology Information (NCBI) in the searches ‘involuntary’ and ‘admission’ in PubMed were included if applicable. Databases were electronically searched with the following search options: apply related words, peer-reviewed journal and abstract available. The material was restricted to the English language and articles should be published between 1995 and 2012 in any country. The search was carried out from November 2011 – July 2012. This search yielded 1216 hits. All the searches were tracked and stored in a grid.

40


The data material was processed, analyzed and reflected through a stepwise procedure. First, the database output of 1216 citations was screened. Citations were excluded at this stage if they were duplicates, oral presentations, essays, reviews or if the title did not refer to admission at all. 161 citations remained and were screened on abstract information. Excluded were abstracts with a focus on specific medical diagnoses, a specific case study, adolescents/ children, readmission, discharge, treatment, outcome, emergency admission, quantitative inquiries that solely described involuntary admission in terms of (legal) criteria, or if the text in the abstract did not refer to admission at all. After this process, 62 articles remained that appeared to address the key issue: perspectives on involuntary admission. In addition, five articles found from the NCBI in the search ‘involuntary and admission in PubMed’ were included at this stage. These 67 articles were read in full text and summarized in a table. The content of the 67 articles was examined and discussed between the two reviewers. Disagreements about inclusion and exclusion between reviewers were resolved by consensus. Finally, 22 articles remained for inclusion in this review. These articles met our inclusion criteria (Figure 1). Data extraction and analysis This review used the guidelines of Preferred Reporting Items for Systematic reviews and Meta-Analyzes (PRISMA) to report as fully and transparently as possible to allow readers to assess the strengths and weakness of the investigation (Liberati 2009). The analysis consisted of four phases. Firstly, the full-text articles were read and examined for content. They were summarized on study aim, research method and main findings (Table 1). Secondly, the articles were categorized into two main groups: articles describing patients’ experiences and articles describing healthcare professionals’ experiences as starting point of research. Thirdly, key themes within each perspective were identified, explored and discussed by the authors until consensus was reached. Fourthly, the emerged themes were described within each perspective (see below). Finally, the outcomes were analyzed, compared and contrasted within and between the different perspectives, so as to be able to draw conclusions.

41

Chapter 3

Literature searches and short listing


1216 titles identified through database searching and screened on title 1055 titles were excluded after removal duplicates, oral presentations, essays, reviews or if title did not refer to admission at all. 161 abstracts were screened on information

62 of full text articles were assessed for eligibility

99 abstracts excluded because of focusing on medical diagnoses, specific case studies, adolescents/ children, family, readmission, discharge, treatment, outcome, emergency admission, quantitative inquiries that solely described involuntary admission in factors or (law)criteria or if the text in the abstract did not refer to admission at all.

5 new found articles were included (n= 67)

5 new articles included from new results from the National Centre for Biotechnology Information (NCBI) in the search “involuntary and admission in Pubmed”.

22 articles included in qualitative synthesis Figure Figure1 1Selection Selectionprocess processofofthe thearticles articles

42

45 articles excluded because they did not met our inclusion criteria: the studies had the patient perceptive or professional health carers’ perceptive of coercion during involuntary admission or the evaluation of the admission process as their central focus.


To explore patients’ and healthcare professionals’ perspectives during involuntary admission, we distinguished between articles describing patients’ perspectives and articles describing healthcare professionals’ perspectives. Within each perspective, we further distinguished between articles with a focus on the inside perspective of the respondents and articles with a focus on the outside perspective. The inside perspective shows the experiences of the respondents themselves. The outside perspective is a description from an external point of view of the behaviours and the situation. Mostly the inside perspective was inquired through narrative methods which allowed patients to freely tell their story of the involuntary admission (Johansson & Lundman 2002; Olofsson & Jacobsson 2001). Or using semi-structured interviews in which the questions were open-ended allowing a wide range of relevant topics to be explored (Sibitz et al. 2011; Anderson & Eppard 1995; Jepsen et al. 2010; Katsakou et al. 2012). The outside perspective was examined through semi-structured interviews (Bennet et al.1993), questionnaires (Bonsack & Borgeat 2005; Wynn et al. 2007; Cascardi & Poythress 1997, Luchins & Cooper 2004; McKenna et al. 1999), or a combination of both (Iversen et al. 2002; Hiday et al. 1997; O’Donoghue et al. 2010; O’Donoghue et al. 2011; Svindseth et al. 2007). The Admission Experience Survey (AES) (Iversen et al. 2002; McKenna et al. 1999; Svindseth et al. 2007), and the Admission Experience Interview (AEI) (Hoge et al. 1997; Cascardi & Poythress 1997; Hoge et al. 1998; Lidz et al. 1998, O’Donoghue et al. 2011) were the ones most frequently applied. The AES was developed by the MacArthur Research on Mental Health and the Law in the United States. It is a 15-item questionnaire reflecting the absence of autonomy with true/false statements.

43

Chapter 3

Results

44

87 admitted patients (34% involuntary admitted)

120 admitted patients at mental health centers (voluntary n= 60 and involuntary n= 60)

331involuntary admitted severely mentally ill patients

157 admitted patients

27 newly admitted psychiatric patients, 15 clinicians and 12 family members.

223 admitted patients (voluntary n=73; involuntary n=150)

13 Danish General Practitioners

Bonsack & Borgeat (2005)/Switzerland

Cascardi et al. (1997)/USA

Hiday et al. (1997)/USA

Hoge et al. (1997)/USA

Hoge et al. (1998)/USA

Iversen et al. (2002)/Norway

Jepsen et al. (2010)/Denmark

To explore GP's experiences from participating in involuntary admission.

To investigate perceived coercion among patients admitted to acute wards in Norway

To study perceptions of coercion in Mental Hospital Admission.

To study patients perceptions of coercion.

To develop a better understanding of coercion in the hospital admission process

To evaluate the admission process and pressures experienced during admission and the contribution of locus of control and psychiatric symptom severity.

To assess the subjective perception of psychiatric admission by patients while still in hospital

To attend to patients perceptions of the morality of attempts by others - primarily family members, friends and mental health professionals - to influence them to be admitted to the hospital.

To learn more about the actual process of clinical decision making during assessment for involuntary psychiatric admission.

24 clinicians (5 psychiatrists, 5 registered nurses and 14 counselors)

157 admitted patients to a psychiatric hospital (70 transcripts)

Study aim

Sample size Participant group

Bennet et al. (1993)/USA

Authors (Reference no/Country) Anderson et al. (1995)/USA

Table 1. Characteristics of the 22 included articles

Qualitative descriptive analysis. One focus group interview and six individual interviews.

Quantitative study: semi-structured interview and two instruments measuring perceived coercion (AES and CL); statistical analysis

Semi-structured interview (Mac Arthur Admission Experience interview)

Structured interview, the Admission Experience Interview

Interviews in the hospital, which included a diagnostic assessment, measures of health and mental health functioning and 15 truefalse items of the MacArthur Interpersonal Relations Scale.

Semi-structured interview (Mac Arthur Admission Experience interview); Locus of Control (LOC) self report measure and Brief Psychiatric Rating Scale-Anchored Version (BPRS-A)

A cross-sectional questionnaire survey

Semi-structured interviews

A psycho-phenomenological study. Interviews

Research Method

GP's experienced involuntary admissions as unpleasant, stressful and time-consuming Not taken seriously

perception of negative pressures process exclusion

degree of procedural justice legal status negative pressures

procedural justice experiences of negative pressures (threats and force)

expectation levels having reference groups awareness of the use of coercion and any deprivation in autonomy

legal status (involuntary) procedural justice negative pressures

social pressure from family, friends or clinicians

inclusion in the process of the admission degree of concern behave honestly and openly

Main findings Which experiences/themes play a role during perceived coercion at admission? nine essential structural elements of the decision making process: systematic and individualized process, state mandated criteria, investigation of alternatives, decision not made alone, intuitive reasoning, connection with the client, caution, and inability to control all contingencies.


446 patients (voluntary n= 446 and patients (voluntary n= 379 involuntary n= 67) 379 and involuntary n= 67)

81 involuntary admitted 81 involuntary admitted patients patients

81 involuntary admitted 81 involuntary admitted

Ng & Kelly Ng & Kelly (2012)/Ireland (2012)/Ireland

O’Donoghue et al. O’Donoghue et al. (2010)/Ireland (2010)/Ireland

O’Donoghue et al. O’Donoghue et al.

1

To investigate people’s perception of the To investigate people’sand perception of the involuntary admission awareness of involuntary admission and awareness legal rights and perception of tribunal of legal rights and perception of tribunal To determine the level of procedural justice To determine the level of procedural justice

To develop a better understanding of To develop a better certain diagnostic orunderstanding demographic of certain diagnostic or demographic correlated of psychiatric admission status. correlated of psychiatric admission status.

To understand patient perception of To understand patient perception of coercion. coercion.

To examine whether psychiatrists' To examine whether psychiatrists' attributions of responsibility for mental attributions of responsibility mental illnesses affect their decisionsfor about illnesses affect their decisions involuntary hospitalization. about involuntary hospitalization.

To explore involuntary patients' To explore involuntary retrospective views on patients' why they perceived retrospective views on perceived their hospitalisation as why rightthey or wrong their hospitalisation as right or wrong To examine the rise in the rate of To examine admissions the rise in the of illness. involuntary forrate mental involuntary admissions for mental illness. To predict patients' perceptions of coercion To predict patients' perceptions of coercion surrounding admission to a psychiatric surrounding admission to a psychiatric hospital. hospital.

To obtain a deeper understanding of the To obtain a of deeper experience beingunderstanding subjected to of the experience of being subjected involuntary psychiatric care to involuntary psychiatric care

How much voice a patient has in the decision making process How much voice a patient has in the decision making process

138 patients (69 138 patientspatients (69 involuntary and involuntary and 69 voluntarypatients patients) 69 voluntary patients)

Mc Kenna et al. Mc Kenna etZealand al. (1999)/New (1999)/New Zealand

1

432 psychiatrists 432 psychiatrists

Luchins et al. Luchins et al. (2004)/USA (2004)/USA

171 admitted patients 171 admitted patients

59 patients involuntary 59 patients involuntary admitted admitted

Katsakou et al. Katsakou et al. (2012)/England (2012)/England

Keown et al. Keown et al. (2011)/England (2011)/England Lidz et al. Lidz et al. (1998)/USA (1998)/USA

5 involuntary hospitalized 5 involuntary hospitalized psychiatric patients psychiatric patients

Johansson & Johansson & Lundman Lundman (2002)/Sweden (2002)/Sweden

Semi-structured interview and the Scale to Semi-structured interview and the Scale to Assess Unawareness of Mental Disorder Assess (SUMD)Unawareness of Mental Disorder (SUMD) Semi-structured interview (Mac Arthur Semi-structured interview (Mac Arthur

Validated psychometric measure of patient Validated measure patient perceptionpsychometric of coercion within theof Mac Arthur perception of coercionSurvey. within the Mac Arthur Admission Experience Multiple Admissionlinear Experience Survey. Multiple stepwise regression analysis. stepwise linear regression analysis. Retrospective three-year period study Retrospective three-year period study

Mailed survey Mailed survey

Ecological analysis of publicly available Ecological analysis administrative data.of publicly available administrative data. Semi-structured interview (Mac Arthur Semi-structured interview (Mac Arthur Admission Experience interview) Admission Experience interview)

Grounded Theory and thematic analysis. In Grounded Theory and thematic analysis. In depth interviews. depth interviews.

Phenomenological hermeneutic method. Phenomenological Narrative method hermeneutic method. Narrative method

Chapter 3

level of respect and dignity. level of respect and dignity.

insight into their illness insight into their illness

feelings of force and negative symbolic pressures (threats and feelings of force and negative symbolic pressures (threats and giving orders) giving orders) the process of procedural justice the process culture of procedural community plays ajustice role community culture plays a role own responsibility for both the onset and recurrence of their own responsibility for both the onset and recurrence of their condition conditionof the risk of harm severity severity of the risk of harm psychiatric diagnosis psychiatric diagnosis conviction of effectiveness of treatment conviction of effectiveness of treatment feelings of loss of autonomy feelings of loss of autonomy perception of threat and force perception of threat and force feelings of anger feelings of anger perception of procedural justice11 perception of procedural justice high rates of deprivation high rates of deprivation unmet forensic mental health unmetisolation forensic or mental health social stressors may play a role social isolation or stressors may play a role

closure of mental illness beds closure of mental illness beds

Feelings of satisfaction when administering the patient help Feelings satisfaction when administering patient help that was of needed and handling the situation the correctly. that was needed and handling the situation correctly. being restricted in autonomy being restricted autonomy being violated byinintrusion on physical integrity and human being violated by intrusion on physical integrity and human value value outside and not seen or heard being being outside and seen or heard being respected asnot an individual being respected as ancared individual being protected and for being protected and cared for feelings of powerlessness and lost control over their lives feelings of powerlessness andprofessionals’ lost control over their lives feeling forced to comply with decisions. feeling forced to comply with professionals’ decisions.


45

46

432 psychiatrists

340 psychologists

102 admitted psychiatric patients (involuntary n= 35; 67) 171voluntary admitted n= patients

81 involuntary admitted patients

81 involuntary admitted

O’Donoghue et al. (2010)/Ireland

O’Donoghue et al.

To determine the level of procedural justice

To investigate people’s perception of the involuntary admission and awareness of legal rights and perception of tribunal

To develop a better understanding of certain diagnostic or demographic correlated of psychiatric admission status.

To understand patient perception of coercion.

illnesses affect their decisions about involuntary hospitalization.

To examine the choices psychologists make when asked whether to decidepsychiatrists' whether coercion To examine should be used. attributions of responsibility for mental

hospital.

To examine the rise in the rate of To examine admissions patients experiences involuntary for mentalofillness. humiliation in the admission process to two acute wards of a psychiatric clinicofatcoercion a To predict patients' perceptions county hospital. surrounding admission to a psychiatric

To explore involuntary patients' To establish a views typology of coercion retrospective on why they perceived perspectives and styles of integration their hospitalisation as right or wrong into life story

How much voice a patient has in the decision making process

446 patients (voluntary n= 379 and involuntary n= 67)

Ng & Kelly (2012)/Ireland

1

138 patients (69 involuntary patients and 69 voluntary patients)

Mc Kenna et al. (1999)/New Zealand

(2004)/USA Table 1. Characteristics of the 22 included articles

Wynn et al. (2007)/Norway Luchins et al.

Lidz et al. (1998)/USA

Keown et al. Svindseth et al. (2011)/England (2007)/Norway

59 patients involuntary 15 involuntary admitted admitted patients

Katsakou et al. Sibitz et al. (2012)/England (2011)/Austria

Semi-structured interview (Mac Arthur

Semi-structured interview and the Scale to Assess Unawareness of Mental Disorder (SUMD)

Retrospective three-year period study

Validated psychometric measure of patient perception of coercion within the Mac Arthur Admission Experience Survey. Multiple stepwise linear regression analysis.

Questionnaire involving three cases of patients suffering from schizophrenia. Mailed survey

Admission Experience interview)

Ecological analysis of publicly available Qualitative interviews, administrative data. the AES questionnaire and the Cantrill Measure Ladder. Regression analysis. Semi-structured interview (Mac Arthur

Grounded Theory and thematic analysis. In A qualitative design drawing on a modified depth interviews. grounded theory. In depth semi-structured interviews

Qualitative descriptive-explorative study: narrative approach. Domain analyze en thematic analysis.

18 involuntary hospitalised psychiatric patients

Olofsson & Jacobsson (2001)/Sweden

To describe involuntary hospitalised psychiatric patients ‘narrated experience of coercion.

Semi-structured interview (Mac Arthur Admission Experience interview) and an insight scale. Phenomenological hermeneutic method. Narrative method

Semi-structured interview and the Scale to Assess Unawareness of Mental Disorder (SUMD)

To determine the level of procedural justice experienced by individuals at the time of involuntary and whetherofthis Johansson & 5 involuntary hospitalized To obtain a admission deeper understanding the 1 How much voice psychiatric a patient haspatients in the decision making process influenced further Lundman experience of beingengagement subjected towith the mental health services. (2002)/Sweden involuntary psychiatric care

To investigate people’s perception of the involuntary admission and awareness of legal rights and perception of tribunal

Retrospective three-year period study




To develop a better understanding of certain diagnostic or demographic correlated of psychiatric admission status.


446 patients (voluntary n= 379 and involuntary n= 67)

Ng & Kelly (2012)/Ireland

stepwise linear regression analysis.

level of respect and dignity.

insight into their illness

high rates of deprivation unmet forensic mental health social isolation or stressors may play a role

feelings of loss of autonomy perception of threat and force feelings of anger perception of procedural justice1

condition severity of the risk of harm psychiatric diagnosis conviction of effectiveness of treatment

community culture plays a role violence to others patients obvious suffering own responsibility for both the onset and recurrence of their

closure of mental illness beds humiliation experience that the admission was not right exposed toforce force and negative symbolic pressures (threats and feelings of treated in a respectful manner/treated as inferior persons giving orders) the doctors and healthjustice workers listened and responded the way process of procedural

feelings of powerlessness and lost control over their lives physical restraint and/or with forced medication decisions. feeling forced to comply professionals’ feelings of humiliation, disrespect, helplessness and being alone

being restricted in autonomy being violated by intrusion on physical integrity and human value being outside and not seen or heard being being being respected respected as as aanhuman individual presence. being protected and cared for

Feelings of satisfaction when administering the patient help level of respect that was neededand anddignity. handling the situation correctly.

insight into their illness

high rates of deprivation unmet forensic mental health social isolation or stressors may play a role

perception of procedural justice1



Other studies used available administrative data (Keown et al. 2011; Ng & Kelly 2012). After dividing the articles according to the main perspective – inside or outside – we could attribute themes identified in the articles to the different perspectives. In Table 2, the experiences and themes are described that played a major role within each perspective. The findings within each perspective will now be described. Outside perspective

Patient

Negative experiences Being powerless Being humiliated

Positive experiences Being guarded Being seen

Professional

Being stressed

Being satisfied Connectedness

Themes Pressure Loss of Autonomy Procedural Justice Respect Attitudes Admission criteria

Chapter 3

Inside perspective

Table 2. Themes and experiences within each perspective Table 2. Themes and experiences within each perspective

The inside perspective of the patient In this perspective, a distinction can be made between negative and positive experiences. The two most commonly reported negative experiences were powerlessness and humiliation. Experiences of powerlessness consisted of not being understood, being ignored, feeling helpless or insecure (Johansson & Lundman 2002). Patients felt they were not being allowed to decide what to do and where to be. They received a treatment not agreed to (Johansson & Lundman 2002), were not being listened to and not being heard (Olofsson & Jacobsson 2001). Patients felt out of control during their hospitalization due to not receiving sufficient information and not being involved in decisions (Katsakou et al. 2012). Another important negative experience was humiliation. Patients felt not being treated as human beings or regarded as having the same human value as healthy persons (Johansson & Lundman 2002). They wanted to be seen not as some inferior kind of human being. Being dependent on healthcare professionals and healthcare made them feel more vulnerable (Johansson & Lundman 2002). Not being involved in decisions was experienced as meaningless and not satisfying their needs, and caused feelings of disrespect and helplessness (Sibitz et al. 2011; Johansson & Lundman 2002; Olofsson & Jacobsson 2001). Patients reported positive experiences when they felt they were being guarded and seen. Patients wanted to feel safe (Sibitz et al. 2011), protected (Olofsson & Jacobsson 2001) and cared for (Johansson & Lundman 2002). These feelings enhanced respect. Respect is considered as a primary ethical principle, a basic requirement for any human interaction and a fundamental component of nursing (Olofsson & Jacobsson 2001). The outside perspective on the patient Other literature measured themes which were important during admission. Most prominent were pressure, loss of autonomy, and procedural justice. The literature distinguishes between negative and positive symbolic pressure. Negative pressure consisted, for example, of treats,

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giving orders, deception, and show of force (Hoge et al. 1997; Lidz et al. 1998; McKenna et al.1999). Positive pressure consisted of persuasion, promises, inducements, asking for a preference, and using words to encourage individuals to make the ‘right’ choice (Hoge et al. 1997; Bennet et al. 1993; Cascardi & Poytress 1997; Lidz et al. 1998). Bonsack (2005) found that voluntarily admitted patients felt more pressure from family and friends than did involuntarily admitted patients. The second important theme was loss of autonomy, which can be described as a loss of liberty, limited possibilities of moving, and being dominated by others (Johansson & Lundman 2002; McKenna et al. 1999). And third, considerable attention is directed to the perception of procedural justice. Procedural justice concerns the fairness and the transparency of the processes by which decisions are made. For patients, this means that their voice is heard and that they have the opportunity to express, explain and participate in the admission decision themselves (McKenna et al. 1999; Iversen et al. 2002; Bennet et al. 1993; Lidz et al. 1998; O’Donoghue et al. 2011). Considerable clinical skills are required to initiate aspects of procedural justice, to reconcile these situations, and to ameliorate perception of coercion. Highly important here is the identification of effective interpersonal communication and the teaching of these methods to all professionals who are likely to be involved in the admission process (McKenna et al. 1999). Or as explained in another study: ‘the challenge is to try to extend to all patients, at the time of their admission, a demonstration in word and action that they are persons with opinions, desires, rights and dignity’ (Cascardi & Pouthress 1997). Professionals could minimize patients’ feelings of coercion by providing a good explanation of the rationale for admission (Bonsack & Borgeat 2005). A study of O’Donoghue (2010) suggests that the majority of patients reflect positively on their involuntary admission if they have greater insight into their illness. If patients are excluded from participation in the admission decision and the actions of others appear to be selfishly motivated, coercion may be more likely to be perceived and resented (Bennet et al. 1993). The inside perspective of the professional The themes identified relating to this perspective were the following: being stressed, being satisfied and connectedness. Only two articles inform about the feelings, motives and attitudes of frustrations of healthcare professionals during involuntary admission. Jepsen et al. (2010) described that general practitioners were stressed and frustrated due to the uncertainty about what was going to happen, the time-consuming procedure, and the fact that they had repeatedly admitted patients who never seemed to benefit from their admissions. On the other hand, they were satisfied if an admission was helpful for the patient and the professional was able to handle the situation correctly. Another positive experience, connectedness, was described in a study by Anderson and Eppard (1995). Clinicians in this study pointed out the importance of being flexible and individualizing the process according to patients’ needs and tolerance. Connectedness facilitated the sharing of experiences and

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helped to clarify risks and become aware of the patient’s vulnerabilities (Anderson & Eppard 1995).

In literature describing the outside perspective of the professional, admission criteria come to the fore, for example the diagnostic and legal criteria (Keown et al. 2011; Bonsack & Borgeat 2005; Wynn et al. 2007; Luchins et al. 2004). Additionally, dangerousness, risk of harm, and violence to others are criteria to take into account (Wynn et al. 2007; Luchins et al. 2005; Pokorny et al. 1999). Important aspects that influence the willingness to admit a patient were: professionals’ attitudes about the personality of the patient, symptom characteristics (Cascardi & Poythress 1997), and the assumption that the patient is responsible for his own condition (Luchins et al. 2004). For example, taking the stance that patients who do not pose a danger to others may not be coerced under any circumstance regardless of how much they suffer as a consequence of their disease. The healthcare professionals studied placed a great importance on patients’ autonomy (Wynn et al. 2007). Persons with substance dependence were considered more responsible for both the onset and recurrence of their condition than persons with other disorders (Luchins et al. 2004). Also, higher age, female sex, and prior experience with coercion were positive predictors of reasons to use coercion (Wynn et al. 2007). Another study focused on factors that mediate the risk of an involuntary admission. Demographic factors such as continent of origin, occupational and marital status, diagnostic factors related to the patient, social setting (deprivation), and nature and extent of mental healthcare service provided, all played a role (Ng & Kelly 2012).

Discussion Our findings are in line with the findings from the review mentioned in the introduction (Katsakou & Priebe 2007). When patients feel that they are given the chance to participate in decisions regarding their care and that healthcare professionals are genuinely interested in their well-being, they find it easier to justify and accept compulsory treatment. However, our review focused on involuntary admission and did not only explore patients’ experiences, but also considered healthcare professionals’ perspectives from an inside and outside point of view. Our review provides some new insights into the differences between patients’ and healthcare professionals’ perspectives and made clear that both perspectives should be taken into account. Sixteen of the 22 articles reviewed described the outside perspective, of which 10 the perspective of the patient and 6 the perspective of the healthcare professional. The inside perspective was mentioned in 6 articles. Regarding our research question, the major quality theme appeared to be the core experience of ‘not being listened to’. When patients are not being listened to, they experience powerlessness, humiliation, not being seen or disrespect. On the contrary, when they have the opportunity to express their feelings and to participate in the process, they evaluate their admission more positively; they seem to feel better afterwards. For healthcare professionals,

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this implies that quality of care will improve if they acknowledge and explicitly pay attention to a patient’s emotional struggles while making the decision to involuntarily admit the patient so as to prevent harm. Healthcare professionals should view the patient in two different ways at the same time: subjectively as a person with feelings and objectively as a person with a diagnosis that requires involuntary admission. Quality of care during coercive admission will improve if healthcare professionals are able to apply these perspectives simultaneously. Professional care relationships are role-orientated and related to a person’s specific need in the context of health and illness (Nortvedt 2001). The word ‘professional’ is often understood as “keeping sufficient distance, not being overly involved (restraining emotions) and being objective” (Martinsen 2011). However, in the case of involuntary admission this attitude may cause harm. More is needed: being present in an attached manner. Two articles mentioned the concept of presence as a deep sense of availability to the patient (Anderson & Eppard 1995; Olofsson & Jacobsson 2001). This pleads for keeping in touch with patients during the process of coercive admission: listen to them and do not leave them alone emotionally or existentially. Martinsen (2011) discussed this professional double perspective by describing the concept of the recording and perceiving eye. In this concept, recording is understood to be the putting of oneself in an outside position, classifying, systematising and differentiating within the framework of an already existing conceptual system. Perceiving is characterized by openness towards the world and other persons, where sensation and emotions are working together. It opens for ‘a seeing emotion’ in which we are touched and emotionally involved and understand the needs of the other. Healthcare professionals may achieve improvement of care during an involuntary admission if they combine their recording eye with their perceiving eye. Furthermore, it would help if healthcare professionals take into account their own needs during the admission process. Mature care is an interesting concept with regard to the admission process (Hem & Pettersen 2011). It means to portray care as a relational, not isolated, activity. The centre of attention is the interaction between the carer and the person being cared for. It implies a balancing of one’s own interests and those of others and highlights reciprocity. With this interpretation of care, dialogue is what is aspired to. To this end, the healthcare professional has to develop into a person who has the capacity to balance both the contact with herself or himself and the contact with the patient at the same time. Thus, during an involuntary admission process, the healthcare professional should be aware of own weaknesses and preconceived attitudes, and have the ability to really listen empathically to the patient.

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The content of the reviewed articles could be arranged in a matrix with respect to inside and outside perspectives of patients and healthcare professionals, which served as a starting point to analyze the data. Findings show that most patients’ experiences can be traced back to one core experience that makes the difference: ‘Am I being listened to?’ If patients experience that they are genuinely listened to, they feel more respected as a human being and less emotionally abandoned. The challenge for healthcare professionals is to explicitly pay attention and really listen empathically to patients’ struggles while considering whether or not to admit the patient. Quality of care during coercive admission improves when healthcare professionals are able to do justice to both inside and outside perspectives simultaneously. Many theoretical concepts underline these conclusions. However, detailed descriptions on how healthcare professionals deal with both perspectives and what barriers might stand in the way are lacking. The challenge for future studies is to explain boundaries and tensions involved during caring in involuntary admission situations from theoretical perspectives, for example in the field of care ethics. Concepts such as vulnerability and autonomy might need to be ‘reinvented’ with respect to preventing harm in patients subjected to involuntary admission. More and deeper empirical knowledge about types of emotional and existential harm in these patients will make the debate richer and possibly provide openings for further humanizing healthcare in situations that challenge healthcare professionals and systems most.

Limitations This review on involuntary admission has several limitations. It could have been strengthened by the inclusion of more criteria. However, the inclusion and exclusion criteria are well described and found suitable for the aim of this review. Another potential limitation is that the themes were removed from their original contexts, which could invite misinterpretation. Moreover, we included both qualitative and quantitative studies. This resulted in a heterogeneous sample of studies and might have blurred the findings. Lastly, the number of databases searched as well the search strategy may have been insufficient to identify all relevant references; having access to published data in the reviewed articles only may have biased our conclusions. Original empirical data are necessary to confirm our findings.

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References Anderson J. & Eppard J. (1995). Clinical decision making during assessment for involuntary psychiatric admission. Psychiatric Services. 46(7): 727–728. Bennet N.S., Lidz C.W., Monahan J., Mulvey E.P., Hoge .SK., Roth L.H. & Gardner W. (1993). Inclusion, motivation, and good faith: the morality of coercion in mental hospital admission. Behavioral Sciences & the Law. 11(3): 295–306. Bonsack C. & Borgeat F. (2005). Perceived coercion and need for hospitalization related to psychiatric admission. International Journal of Law and Psychiatry. 28(4): 342–347. Cascardi M. & Poythress N.G. (1997). Correlates of perceived coercion during psychiatric hospital admission. International Journal of Law and Psychiatry. 20(4): 445–458. Gerridzen I. & Adema S. (2011). The Korsakoff’s syndrome: more than amnestic syndromes (Het syndroom van Korsakov: meer dan geheugenstoornissen). Tijdschrift voor Ouderengeneeskunde. Februari: 15–24. Hem M.H. & Pettersen T. (2011). Mature care and nursing in psychiatry: notions regarding reciprocity in asymmetric professional relationships. Health Care Analysis. 19(1): 65–76. Hiday V.A., Swartz M.S., Swanson J. & Wagner H.R. (1997). Patient perceptions of coercion in mental hospital admission. International Journal of Law and Psychiatry. 20(2): 227–241. Hoge S.K., Lidz C.W., Eisenberg M., Monahan J., Bennett N., Gardner W., Mulvey E.P. & Roth L.H. (1998). Family, clinician, and patient perceptions of coercion in mental hospital admission. A comparative study. International Journal of Law and Psychiatry. 21(2): 131–146. Hoge S.K., Lidz C.W., Eisenberg M., Gardner W., Monahan J., Mulvey E., Roth L. & Bennet N. (1997). Perceptions of coercion in the admission of voluntary and involuntary psychiatric patients. International Journal of Law and Psychiatry. 20(2): 167–181. Hoyer G. (2008). Involuntary hospitalization in contemporary mental health care. Some (still) unanswered questions. Journal of Mental Health. 17(3): 281–292. Iversen K.I., Hoyer G., Sexton H. & Gronli O.K. (2002). Perceived coercion among patients admitted to acute wards in Norway. Nordic Journal of Psychiatry. 56(6): 433–439. Jankovic J., Yeeles K., Katsakou C., Amos T., Morriss R., Rose D., Nichol P., Mc Cabe R. & Priebe S. (2011). Family caregivers’ experiences of involuntary psychiatric hospital admissions of their relatives - a qualitative study. PLoS ONE. 6(10): 1–7. Jepsen B., Lomborg K. & Engberg M. (2010). GPs and involuntary admission. British Journal of General Practice. 60 (August): 604–606. Johansson M. & Lundman B. (2002). Patients’ experience of involuntary psychiatric care: good opportunities and great losses. Journal of Psychiatric and Mental Health Nursing. 9(6): 639–347. Katsakou C. & Priebe S. (2006). Outcomes of involuntary hospital admission- a review. Acta Psychiatrica Scandinavica. 114(4): 232–241. Katsakou C. & Priebe S. (2007). Patients’ experiences of involuntary hospital admission and treatment: a review of qualitative studies. Epidemiologia e Psichiatria Sociale. 16(2): 172–178. Katsakou C., Rose D., Amos T., Bowers L., McCabe R., Oliver D., Wykes T. & Priebe S. (2012). Psychiatric patients’ views on why their involuntary hospitalization was right or wrong: a qualitative study. Social Psychiatry and Psychiatric Epidemiology. 47(7): 1169–1179.

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How to increase quality of care during coercive admission? Keown P., Weich S., Bhui K.S. & Scott J. (2011). Association between provision of mental illness beds and rate of involuntary admissions in the NHS in England 1988-2008: ecological study. BMC 343: d3736. Kolb B. & Whishaw I.Q. (1985). Fundamentals of Human Neuropsychology, 2nd Ed. New York: W.H. Freeman and Company.

Liberati A., Douglas G., Altman D., Tetzlaff J., Mulrow C., Gotzsche P.C., Ioannidis J.P.A., Clarke M., Devereaux P.J., Kleijnen J. & Moher D. (2009.) The PRISMA statement for reporting systematic reviews and meta-analyzes of studies that evaluate health care interventions: explanation and elaboration. Annals of Internal Medicine. 151(4): W65–94. Lidz C.W., Mulvey E.P., Hoge S.K., Kirsch B.L, Monahan J., Eisenberg M., Gardner W. & Roth L.H. (1998). Factual sources of psychiatric patients’ perceptions of coercion in the hospital admission process. The British Journal of Psychiatry. 155(9): 1254–1260. Luchins M.D., Cooper A.E., Hanrahan P. & Rasinski K. (2004). Psychiatrists’ attitudes toward involuntary hospitalization. Psychiatric Services. 55(9): 1058–1060. Martinsen E.H. (2011). Care for Nurses Only? Medicine and the Perceiving Eye. Health Care Analysis. 19(1): 15–27. McKenna B.G., Simpson A.I.F. & Laidlaw T.M. (1999). Patient perception of coercion on admission to acute psychiatric services. International Journal of Law and Psychiatry. 22(2): 143–153. Monahan J., Hoge S.K., Lidz C., Roth L.H., Bennett N., Gardner W. & Mulvey E.P. (1995). Coercion and commitment: understanding involuntary mental hospital admission. International Journal of Law and Psychiatry. 18(3): 249–263. Mulder C.L., Uitenbroek D., Broer J., Lendemeijer B., van Veldhuizen J.R., van Tilburg W., Lelliot P. & Wierdsma A.J. (2008). Changing patterns in emergency involuntary admissions in the Netherlands in the period 2000-2004. International Journal of Law and Psychiatry. 31(4): 331–336. Ng X.T. & Kelly B.D. (2012). Voluntary and involuntary care: three-year study of demographic and diagnostic admission statistics at an inner-city adult psychiatry unit. International Journal of Law and Psychiatry. 35(4): 317–326. Nortvedt P. (2001) Needs, closeness and responsibilities. An inquiry into some rival moral considerations in nursing care. Nursing Philosophy. 2(2): 112–121. O’Donoghue B., Lyne J., Hill M., Larkin C., Feeney L. & O’Callaghan E. (2010). Involuntary admission from the patients’ perspective. Social Psychiatry and Psychiatric Epidemiology. 45(6): 631–638. O’Donoghue B., Lyne J., Hill M., Larkin C., Feeney L. & O’Callaghan E. (2011). Physical coercion, perceived pressures and procedural justice in the involuntary admission and future engagement with mental health services. European Psychiatry. 26(4): 208–214. Olofsson B. & Jacobsson L. (2001). A plea for respect: involuntary hospitalized psychiatric patients’ narratives about being subjected to coercion. Journal of Psychiatric and Mental Health Nursing. 8(4): 357–366. Pettersen T. & Hem M.H. (2011). Mature care and reciprocity: two cases from acute psychiatry. Nursing Ethics. 18(2): 217–231. Pokorny L., Shull R.D. & Nicholson R.A. (1999). Dangerousness and disability as predictors of psychiatric patients’ legal status. Behavioral Sciences & the Law. 17(3): 253–267.

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Legemaate J. (2008). Besluiten over dwang in de psychiatrie: ken je klassieken! [Decisions on Coercion in Psychiatry: Know your Classics!]. Nederlands Juristenblad. 30: 1505.

How to increase quality of care during coercive admission? Sibitz I., Scheutz A., Lakeman R., Schrank B., Schaffer M. & Amering M. (2011). Impact of coercive measures on life stories: qualitative study. The British Journal of Psychiatry. 199(1): 239–244. Sulkunen P., Rantala K. & Määttä M. (2004). The ethics of not taking a stand: dilemmas of drug and alcohol prevention in a consumer society - a case study. The International Journal of Drug Policy. 15(5): 427–434. Svindseth M.F., Dahl A.A. & Hatling T. (2007). Patients’ experience of humiliation in the admission process to acute psychiatric wards. Nordic Journal of Psychiatry. 61(1): 47–53. Van der Post L., Mulder C.L., Bernardt C.M.L., Schoevers R.A., Beekman A.T.F. & Dekker J. (2009). Involuntary admission of emergency psychiatric patients: report from the Amsterdam Study of Acute Psychiatry. Psychiatric Services. 60(11): 1543–1546. Wynn R., Myklebust L-H. & Bratlid T. (2007). Psychologists and coercion: decisions regarding involuntary psychiatric admission and treatment in a group of Norwegian psychologists. Nordic Journal of Psychiatry. 61(6): 433–437.

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Chapter 4 Conflicting conceptions of autonomy. Experiences of family carers with involuntary admissions of their relatives.

Published as: van den Hooff, S.L. & Goossensen, A. (2015). Conflicting conceptions of autonomy. Experiences of family carers with involuntary admissions of their relatives. Ethics and Social Welfare. (9)1: 64-81.

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Conflicting conceptions of autonomy

Abstract This paper explores dilemmas of family carers experienced during the care- seeking process for a relative suffering from Korsakoff’s syndrome. The main objective of this study was to find clues to improve this delicate process by generating knowledge about the care-seeking process towards a coercive admission. Data were derived from 11 semi-structured interviews. The analysis unveiled a core concept that could be labeled ‘imposing care’. It reflects the essence of the family carers’ struggle to find appropriate care for the relative. During the care-seeking process carers felt tension between infringing the relative’s autonomy, and maintaining or restoring human dignity. Respecting autonomy as the ‘right to self-determination’ implied an attitude of non-interference and consequently the physical deterioration of the relative suffering from Korsakoff’s syndrome. In the theoretical reflection on the data a relational view of autonomy is proposed in which all people are seen as interdependent. Thus, not only values such as sovereignty and freedom should be fostered, but also values such as attentiveness and trust. Coercive admissions should be made possible. Non-interference results in immoral dehumanizing situations. Family carers’ knowledge is necessary to interpret patients’ choices. Legal and professional care procedures should make more use of this knowledge.

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Family carers play a pivotal role in maximizing the health and quality of life of individuals with acute and chronic illness (Mitnick et al. 2009). A substantial body of literature describes the profound burden experienced by family carers of relatives suffering from a chronic disease (e.g. dementia, schizophrenia, bulimia nervosa), and practical and psychological problems have been reported by family carers (Papastavrou et al. 2007; Winn et al. 2007; Hallam 2007; Ochoa et al. 2008; Schultz & Sherwood 2008; Roth et al. 2009; Papastavrou et al. 2010; TurróGarriga et al. 2012). Family carers can be kin and non-kin, and their caregiving is unpaid and often relies on care and trust in the context of enduring relationships, which are intrinsic to family life (Murray & Barnes 2010; Leow & Chan 2011). Families share values such as mutual affection and intimacy, nurture, company and mutual help over many years (Gheaus 2012). In this article, this group of family caregivers is referred to as ‘carers’. Keywood (2013) described the overlapping roles of carers. They are expected to act as proxies in making decisions, they are functioning as gatekeepers to welfare and mental health services, and on the other hand have their own sets of interests and needs which are deeply interwoven with those of whom they care. In some situations carers may face extremely difficult situations, such as when the relatives they assist lack insight into their illness, as is the case in patients suffering from Korsakoff’s syndrome. Korsakoff’s syndrome is a chronic neuropsychiatric condition, characterized by a severe memory disorder resulting from acute Wernicke’s encephalopathy mostly secondary to chronic alcohol abuse, self-neglect and concomitant thiamine deficiency (Arts 2004; Kopelman et al. 2009; Gerridzen & Goossensen 2014). The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) refers to Korsakoff’s syndrome as an alcohol induced persisting amnestic disorder placed under the category of substance induced persisting amnestic disorders (American Psychiatric Association 2000). Patients suffering from Korsakoff’s syndrome appear quite normal, have normal IQs, and can be alert, intelligent and attentive, which makes it difficult to judge their competence. Nevertheless they are not aware of their illness, and consequently do not have any care demands for themselves. However, without coercive help they will literally drink themselves to death (see Textbox 1, Symptoms of Korsakoff’s syndrome). These patients usually only are brought into contact with professional healthcare through an intervening carer. Carers report long histories of trying to arrange appropriate care and being confronted with aggressiveness, violence, and disruption of family life. It is not known how carers cope with these obstacles, and how ‘good’ assistance for them and their relatives can be reached. Carers’ experiences with the process of seeking professional care for a relative suffering from Korsakoff’s syndrome have not been studied so far. The present study, which is part of a larger study on this patient group, addresses the following questions: How do carers experience the care-seeking process for their relative suffering from Korsakoff’s syndrome? What kind of dilemmas do they encounter during this process? This paper first describes the legal background of our study, so as to provide 57

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insight onto the context in which the carers have to act, and next presents and discusses the research data. Textbox 1. Seven major symptoms of Korsakoff’s syndrome (Kolb and Whishaw 1985; Arts 2004) 1. Anterograde amnesia. The patients are unable to form new memories. 2. Retrograde amnesia. The patients have an extensive impairment of remote memory that covers most of their adult life. 3. Confabulation. Patients make up stories about past events rather than admit memory loss. These stories are often based on past experiences and are therefore often plausible. 4. Meagre content in conversation. Patients have little to say, unspontaneous conversation, presumably in part because of their amnesia. 5. Lack of insight. Many patients are virtually completely unaware of their memory defect. 6. Apathy. Indifference and incapacity persevere in ongoing activities. The patients lose interest in things quickly and generally appear indifferent to change. 7. Central executive disorders. Problems with planning and organizing the daily activities and little sense of their own capabilities and limitations.

Legal Background Legal frameworks for involuntary placement or treatment still differ widely between the member states of the European Union. For example, danger to oneself or to others is an essential prerequisite in Austria, Germany and the Netherlands, whereas this criterion is not addressed at all in Italy, Spain and Sweden (Salize et al. 2002). More information about differences in legal frameworks and routine procedures of compulsory admission across the European Union is provided by Salize et al. (2002). In the Netherlands, the setting of this study, the Dutch Compulsory Admission Act (BOPZ) is applicable in case of an involuntary admission to general psychiatric hospitals, psychiatric departments of general and teaching hospitals, to nursing homes and institutions for the intellectually disabled (Legemaate 2008). The law is clear: it is unlawful to impose medical treatment, or involuntary admission, on competent persons without their consent. This is embedded in the so-called presumption of competence which implies that not mental competence, but mental incompetence should be demonstrated, and evaluated in each new situation. Meeting the dangerousness criteria is the only criterion justifying or permitting someone to be placed involuntarily, and no reasonable alternatives are available (Legemaate 1994; Salize et al. 2002). In the Netherlands, Courts decide the permissibility of compulsory admission, and the issuing of a legal mandate necessary for this admission. The family carer only has a limited role in Dutch law during involuntary admission. Family may submit a request for a legal mandate, as may the prosecutor. Nevertheless, before carers are able to submit a request a psychiatrist must prepare a medical declaration to show the relationship between the mental disorder (Korsakoff’s syndrome) and the potential danger.

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Psychiatrists can be reluctant to submit a medical declaration when they presume that the Court most likely will not accept their request. First of all, it can be difficult to describe the relationship between the danger and the Korsakoff’s syndrome. Secondly, alcohol abuse is not regarded as a mental illness within the meaning of the Act, so Korsakoff’s syndrome has to be diagnosed before a legal mandate can be issued. This may take a long period of observation and (neuro-) psychological diagnostic research. Without a medical declaration an involuntary admission is impossible.

The Study The main objective of this study was to find clues to improve the care-seeking process by generating knowledge about this delicate process towards a coercive admission. Design This study is qualitative in character, finds its roots in the grounded theory approach, and uses a qualitative semi-structured interview approach to explore carers’ experiences. This approach is well suited for studying complex and hidden processes and gave us practical and useful tools to analyze our data. Participants This qualitative study focuses in depth on a purposefully selected sample (Patton 2002). The sample consisted of 12 kin carers and one non-kin carer. All were related to a patient suffering from Korsakoff’s syndrome receiving group-living residential care in a long-term care facility. Long-term care is not aimed at cure, as cure of Korsakoff’s syndrome is not possible. One carer passed away during our study. We used the strategy of typical case sampling for purposefully selecting our information rich cases (Patton 2002). With the cooperation of key informants in the network of the Korsakoff Knowledge Center, we had access to various nursing homes with specialized units for patients suffering from Korsakoff’s syndrome. This center aims at developing knowledge, practice, and skills in the widest possible sense for patients suffering from Korsakoff’s syndrome. Criteria for inclusion were: the carer was willing to participate in the inquiry and the patient was able to participate in another part of our study. In all cases the healthcare professionals asked the potential participants if the researcher could contact them. Age varied from 26 to 84 years old, and all carers were of Dutch nationality. Characteristics of the carers and their relatives are summarized in Table 1. Data collection Data collection focused primarily on carers’ experiences during the care-seeking process till the relative was admitted to a nursing home. A qualitative semi-structured interview approach

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was used. All interviews were held in the carers’ homes. When interviewees described their experiences, the interviewer asked them to explain how they viewed their relative’s mental competence; what they saw as good care; how they experienced the contacts with the institutions, and if compulsion or coercion was used during the admission process. This interview approach resulted in lengthy interviews, usually taking around 70 minutes. Its main advantage was that it permitted respondents to express their concerns on different subjects, while the interviewer had the opportunity to build conversations around particular subjects (Dickson-Swift et al. 2006; Patton 2002). All the interviews were recorded on audio tape. This allowed the interviewer to concentrate on the conversation strategy and making focused field notes. Interviews were conducted and transcribed verbatim by the same researcher (SH) to aid recall, to ensure consistency and accuracy of reporting thus strengthening the rigour of the study, and to adhere to ethical principles of confidentiality of the data (Beech et al. 2011). Case

Participant’s relationship to Age of the Age of the the Korsakoff patient participant patient 001 Friend 51 53 002 Daughter 39 70 003 Sister 58 60 004 Sister 52 53 005 Sister 56 58 006 Daughter 26 51 007 Wife 52 56 008 Brother and spouse 57 and 53 54 Mother (died before we 009 84 61 could meet.) 010 Brother and spouse 53 and 44 55 011 Sister 66 61 Total 13 Table1.1.Participants Participants patients characteristics (in 2012) Table andand patients characteristics (in 2012)

Gender patient Female Male Female Male Female Female Male Male

Number of interviews 1 1 1 1 2 1 1 1

Male

0

Male Male

1 1 11

Data analysis Data were collected and analyzed concurrently through the constant comparative method. The inductive analytical tools provided by the Qualitative Analysis Guide of Leuven (QUAGOL) provided us with a framework of references, and navigated us from phase-to-phase systematically, without the intention of developing a theory (Dierckx de Casterlé et al. 2012). This ‘grounded’ way of analyzing fits to an ethics of care research approach. It can provide insight into what good care can be for specific patients in specific situations or care practices. The transcriptions of the 11 interviews (one family member was interviewed twice) were first thoroughly read several times in order to become familiar with the data and getting a sense of the interview as a whole. Secondly, the interviews were analyzed by using an open coding method, supported by the Atlas.ti software. In open coding each line of text was

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examined, and read several times. Codes were attributed to individual words or sentences to categorize the data according to their meaning and actions. Thereafter, the codes were more specifically grouped into hurdles that carers experienced. As we proceeded to compare these hurdles, core categories emerged. Memos and comments were written to aid the transparency of the analytical process and verifiability of the research.

This study did not need to be submitted to an accredited Medical Research Ethics Committee for approval to comply with the Dutch Act of Medical Research Involving Human Beings (WMO)9. Legal advice was that medical research comes within the scope of the WMO when patients are subjected to special proceedings or behavioural rules are imposed, which is not applicable to our research. However, we obtained approval from the participating nursing homes, and all the interviewees had received written information about the study as well as contact details of researchers if they should need more information. Participation was voluntary and each carer gave written consent at the beginning of the interview. All transcribed interview data were kept anonymous and participants were assigned a non-identifiable code to ensure privacy.

Rigour To enhance the quality of our approach, collected material, field notes and memos were documented in detail. Furthermore, data were categorized and analyzed with dedicated software and discussed with fellow researchers. Reliability of this study was increased by the cyclical nature of the research. Interview transcriptions were discussed and compared on a regular basis by the two authors and this led to a shared analytical framework. Furthermore, the analysis was reviewed by peer reviewers from the ‘Care Ethics’ research group from the University of Humanistic Studies, Utrecht.

Findings The data analysis revealed the existence of five phases, demonstrating three aspects of the imposition of care until admission (see Table 2). Not all participants, however, went through each phase. The one non-kin carer (001) was not yet present in the life of the patient in phases 0 and 1; this carer started to impose care in phase 2. Another exception was case 006: this daughter was too young in phases 0 and 1 to be of importance in seeking care. At the age of 17 she left home and at the age of 24 she started to impose care (phase 2). The relative of case 005 is on the waiting list for a place in the nursing home, which implies that phase 4 has not been achieved yet. All other carers went through all phases, which between subjects differed in duration (details not provided). The core concept identified throughout these phases was ‘imposing care’. This concept embodies the essence of the carers’ struggle 9

In Dutch: Wet Medisch wetenschappelijk Onderzoek met mensen

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for finding appropriate care. Three aspects of imposing care could be recognized: ‘Convince myself’; ‘Violate the autonomy of the relative’; and ‘Persuade the healthcare professional’. In the next section we first describe the core concept and its characteristics and then move on to a qualitative description of the above three aspects. Aspects of imposing care

1.“Convince myself” 2. “Violate the relative’s autonomy” 3. “Persuade the health-care professional”

Loss of dignity, life-threatening excessive drinking

Nursing home admission

Phase 0 No intrusion in the life of the relative

Phase 1 Intrusion in the life of the relative

Phase 2 Insistence to get care for the relative

Phase 3 Determined to get care for the relative

Carers have to learn to recognize symptoms of severe alcoholism.

Carers have to acknowledge the seriousness of the situation and convince themselves that they need to start imposing daily care on their sick relative.

Carers have to convince healthcare professionals that home care assistance is needed for the relative to maintain an acceptable dignified life. The relative must give up part of his autonomy.

Carers have to realize that the relative will die when no care is offered. Overruling the relative’s autonomy, and ‘fighting’ for an involuntary admission seem the only options to prevent further deterioration and dignity loss.

Phase 4 Persisting in achieving the best possible care while in care centre Carers have to cope with the involuntary admission. They will arrange the most appropriate daily care.

Table 2. A model of “imposing care” from family carers’ perspective.

Table 2. A model of “imposing care” from family carers’ perspective.

The Core Concept: ‘Imposing Care’ ‘Imposing care’ means to force someone to receive care. This measure was necessary to maintain or achieve a dignified way of life for the relative. Figure 1 brings out that perceptions may change during a phase. Sometimes the relative is doing a little better, sometimes doing worse, which changes have impact on the carers’ perception. This study revealed three aspects of imposing care from a carer’s perspective. We present experiences relating to these three aspects. Firstly, experiences with respect to the

Valuation of dignity from family carers’ perspective

The relative lives a independent life.

Starting point next phase

The relative neglects his daily care.

The relative is physically deteriorating and his house is polluting.

Demarcation line of acceptable dignified life from family carers’ perspective

Without professional healthcare, the relative will die. Involuntary admission is a fact.

Figure 1. Family carers’ perception of human dignity.

Figure 1. Family carers’ perception of human dignity.

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carers themselves: convincing themselves that it is necessary to act and encroach upon the autonomy of their relative. Secondly, experiences related to the imposition of care on the relatives: actually violating their autonomy to restore or maintain a dignified way of living. And thirdly, experiences related to the healthcare professional: persuading them to get help for their relative, as a result of which they violate patient autonomy. For each aspect we describe experiences through the different phases.

Qualitative Description of the Three Aspects of Imposing Care from the Family’s Perspective In phase 0 carers saw their relative was drinking a lot, but they did not recognize the severity of the alcoholism. (007) ‘It is a process of years. I knew the drinking was a problem, but right at that moment you’re blind to it.’ (008) ‘He already drank a lot at the time. Do you remember? But we didn’t realize the severity of the problem.’ During this process they allowed the relative to come into their lives when he needed them, despite the sometimes unwanted intrusion in their own life. (004) ‘For years he came to me every day. Early in the morning, at 7 o’clock, you know, drinking coffee. And at one point in time, his house did not interest him anymore; my sister and mother had to clean it.’ (004) ‘Look, I have a family too. My children were afraid of D. When they saw him coming into our backyard, they said: ‘Uncle D. is coming’. At that moment, I sent the children out through the front door. All children had to leave the house immediately. You do not want that. No, you do not want that (you want a safe home for them).’ At this moment in the process, phase 1, carers had to admit the seriousness of the situation and motivate and convince themselves to start imposing daily care on their sick relative. This implied a shift in status from a supportive family member to a carer family member. They recognized that the relative did not care for basic needs anymore, including daily physical care, household chores and eating. During this phase the carers had doubts about their responsibilities: should they intrude in the life of their relative or should they not? (005/01) ‘The house was filthy, paper, newspapers everywhere, garbage, mice, odours, really bad. So I’ve been there to clean, my two sisters and I cleaned it again and again.

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1. ‘Convince myself’


I also contacted the social health services to ask for mice control. And they said: ‘No that is the responsibility of the owner of the house’. And the owner said: ‘No, it is the responsibility of the tenant. The tenant should keep the house clean and ensure that nothing is wrong’.’ In phase 2 it became clear for the carers that the relative needed professional home care assistance to maintain an acceptable, dignified life. In this process they noticed that healthcare professionals often did not see the problem. Carers saw their relative was physically deteriorating and his house was being polluted. They could not do all the caring anymore and needed external assistance. Carers had to convince themselves of the necessity to fight for recognition of the problems of their relative. (011) ‘I’ve tried everything, nothing works. I really, really have done my best to find help’. Carers became desperate, realizing that help was needed in order to prevent serious damage to the life of their relative. When no care is offered, he will certainly die. An involuntary admission is the only solution to counter the problems. Carers had to ignore the wishes of the relative and violate his autonomy (phase 3). (006) ‘I tried with everything I have to get a psychiatrist there, who would assess her for that legal mandate, because that still had not happened. I really have been struggling for months.’ In phase 4, after involuntary hospitalization, the most important struggle of carers is doubt: ‘Did I make the right decision for my relative?’ (008) ‘The most difficult dilemma for me was, that this is his life and that he did not make a decision for the admission himself. And I understand his feelings so incredibly well. A couple of weeks ago he tried to cut his wrists, to what extent he really wanted to die, I do not know. But the first thing I was thinking was ‘unfortunate that it failed’. Not because I dislike my brother, but I can imagine, he’s very smart, that he cannot accept this as his life. Then I really thought ‘gosh, this is your life. I’m so sorry for you’. I can understand that he would like to end his life. Whether or not he really is ever going to do it, I do not know’. The carer’s advocacy in this phase of finally arranged involuntary long-term care is not over. It consists of demanding the most appropriate daily care for their relative, to make the admission bearable for their own peace of mind and for their relative. They do not feel happy about violating the autonomy of their relative. To abate this negative feeling, they try to arrange the best possible care for them.

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(010) ‘He wants to go more to the gym, he wants to do more woodworking. We also know that he likes to paint, so we asked ‘when can he start painting?’ They said: ‘Yeah, if he is depressed’. I said, ‘won’t it be smarter to let him paint before he gets depressed?’. You always have to be alert to this kind of thing. ‘When it is a problem, you send him to the gym for another day, he can go alone by bike’. They said: ‘Yes, but we have a sick coach’. I said: ‘Well, that isn’t my problem’. And yes, with all respect, as physically fit as he is right now, mentally quite good, you should offer him something at this moment. And I think that’s still a problem we have to deal with.’

(006) ‘Yes, she probably gets a bleeding at home, you know. Then she will die there. In the institution, that will not happen, I hope. Or at least her death will be a little more dignified. More pleasant for us. And for her eventually. I find it very difficult, I do not know what to expect from the future. I actually do not expect anything. So yes, I really hope, the time she still has, I can see her a little sober. Then she is so cute, she is so sweet. My mother is just a very sweet person. I hope that will come out a little, the time we still got together, yes you know.’ 2. ‘Violate the autonomy of the relative’ An important aspect of the imposition of care is when care is imposed directly on the relative. In phase 1 the carers intrude into the life of the relative to keep an eye on him. In phase 2 the relative has to give up a bit of his autonomy, because he must allow others, such as social welfare workers, to come into his life. In phase 3 his own voice is overruled, whether he likes it or not. The carer is trying to arrange an involuntary admission. Carers had to admit that the relative does not want professional healthcare, but at the same time it is hard to cut ties. They cannot let him go as a stranger; they still feel family attachment and love. (010) ‘We really had a discussion, what are we going to do? Are we going to respect his wishes or shall we intervene? And what does that mean? How can we cope? Will we feel terribly guilty if he dies? We really talked about that kind of thing. Often. (…) You must go on. Where are we going to? Often, we had that kind of conversation. And when you think you finally have found care, they sent him home, because he wanted that. Actually, that was the worst moment for us. At that moment we did withdraw. If this is what you want, then do it. But not always at our expense. I held out for a while, but after one and a half week I went shopping again for him. Then I thought, I cannot let him down, I just cannot. That was what I said when I was angry, but I just cannot.’

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On the one hand the families are relieved that admission is a fact and that their relative can live a better life without the acute risk of dying. But they stay alert. Will their relative stay in the nursing home and not walk away? Will the legal mandate be continued?


Carers felt trapped between not being able to cut the ties and not being able to arrange the necessary help. (004) ‘Yes until it really didn’t go anymore. What I do know, without our help, my brother no longer lived anymore. Really. He had simply drunk himself to death. He was polluted. Only we persevered, I think we had more strength to persevere, because it really got bad.’ In order to face this dilemma, carers had to force themselves, persevering in their attempt to arrange treatment in order to prevent death. (006) ‘They (doctors) are proud people. Fear of being proved wrong. I have turned over the whole hospital. I became very angry (….). And the doctor saw it all and saw how very ill she was, he just let her go home. He said: ‘The lady here just may decide for herself’. If my mother thinks that she can go on drinking her bottle of wine in the hospital, what is the doctor thinking when he sent her home? That everything will be okay at home?’ 3. ‘Persuade the healthcare professional’ A final aspect of the imposition of care is that carers have to persuade healthcare professionals to impose care on the relative. They tried to convince the general practitioner, social welfare institutions, the hospital, police, and other healthcare professionals who were familiar with the problems, that there is a need for professional care (phase 2). They met unwillingness or lack of opportunities from the side of the healthcare professionals to arrange appropriate and lasting (forced) care. Opportunities to admit a patient are dependent on factors such as the legal system, attitudes toward the patient, and the mental health system. (005/01) ‘Then an ambulance was called, she went to the hospital. My sister and I were called at 8 o’clock in the morning by a friend. ‘Your sister is in the hospital emergency department and everything is wrong’. That was probably one of the markers that she (the friend) thought that it was not okay any longer. Then I made a call to the emergency unit and they said: ‘Yes, she is here, but we will send her home again, because she is an alcoholic and that’s why we won’t do anything’. During the care-seeking process, almost all relatives had been admitted to a hospital or detoxification unit. If admitted to a hospital for physical problems, their stay was likely to be brief and they returned home without treatment of their alcohol abuse. If admitted to a detoxification unit, carers had been hoping that their relative would get rid of the alcohol addiction permanently. However, after the detoxification period was over, patients refused further treatment and had to be released.

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Some healthcare professionals advised carers to cut the ties with the relative. In the eyes of the professional, carers were too concerned and this was at the expense of carers’ own health and had impact on their life circumstances. This advice made carers feel they were not taken seriously.

The most important reason to go on was carers’ fear of finding their relative dead. They had to deal with this fear, and as a consequence they kept on fighting for a human way of life. (004) ‘There was no human dignity anymore. He was just a beast. I mean, we often found him totally disorientated, totally drunk, oh…. lying in his own faeces. It is not dignified anymore. Like I said, he just became an animal.’ At this point all carers used all of their powers to persuade healthcare professionals to arrange a legal mandate for an involuntary admission to impose care on their relative (phase 3). (006) ‘Then I became so angry, I said ‘now I just want to speak to the manager, or I don’t know who, someone who is in charge, that’s the person I want to speak to now’. (…) ‘He’s not here; he’s working at a different location’. Then I went to that other location, where the board and everything else is. I just went in. I really was not allowed to go inside. I just did, to the board room. I said: ‘I want to know where the director is’. ‘You have to make an appointment with him’, they said. ‘Yeah I did, he should call me back’. ‘Well he stands behind you’. Then he stood there. So I looked at him and said: ‘Look, we need to have a good talk with each other’. (…). Fortunately he listened to me. (…).Well, finally I told him what I thought was good for her. He said ‘well, I’m going to arrange it’.

Discussion of Findings The experiences of carers in this study shed light on some important aspects in the careseeking process towards a coercive admission for their relative suffering from Korsakoff’s syndrome. Carers had to convince themselves of the need to actually violate the autonomy of their relative and to persuade healthcare professionals during the different phases of organizing appropriate care. These aspects of the imposition of care all illustrate that tension may arise when overruling the relative’s autonomy seems the only option to ensure a coercive admission aimed at preventing further deterioration and dignity loss.

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(008) ‘They told us that we had to let him go. We heard that very often. While I, as I look back, still think, we have done well, because we did not abandon him because of his behaviour. He still exists. Of course, we also learned to set our boundaries in the course of time. That does not mean we won’t do anything anymore. It continues, it doesn’t matter how damaged he is.’


Most carers in our study were imbedded in a family relationship in which they were expected to display helpfulness and commitment towards each other. This attitude is based on familial love as reflected by shared affection, intimacy, nurture and mutual help over years (Gheaus 2012). Within Western society, individuals are participating in a free and self-regulating market, and consumer choices are dominant values (Sulkunen et al. 2004). Asking and finding good care is seen as a personal responsibility. Even people with addiction problems are often seen as autonomous people who are competent to decide for themselves how they want to live their life. For the majority of people in Western society, abuse of alcohol is still assumed to be persons’ own competent choice, despite the large body of scientific evidence indicating that genetic factors influence the risk of abusive disorders, with heritability estimates of 50 percent and higher (Dick & Agrawal 2008). People with addiction problems should ‘bear the consequences themselves’, and as a consequence are left alone (Janssens et al. 2004). Carers in our study acknowledged that people suffering from Korsakoff’s syndrome cannot bear the consequences themselves due to physical and mental deterioration, and that they need professional care. Providing care is not an easy task, because the need is often denied and rejected. Carers had to convince themselves that it was necessary to interfere in the private situation of their relative (phase1), because they found it unnatural to intrude into the lives of their independent relatives. The acceptance of the intrusion into the independent life of relatives is not that common and varies among different cultural and social economic status groups (Engster 2005). When professional assistance became necessary (starting in phase 2), carers had to persuade healthcare professionals over and over again to see the severity of the problem. Carers experienced a lack of attentiveness when healthcare professionals did not respond to their request for care for their relative. Timely assistance could not be arranged, and their relatives were not recognized as patients needing care, which caused further deterioration of their health. Dybwik et al. (2011) refers to this as ‘the fight against the system’. One of the reasons for this ‘fight’ could be the existence of different conceptions of autonomy between healthcare professionals and carers, as demonstrated in this study. Healthcare professionals are tied to the legal system, regulating the provision of care and admission possibilities. The legal system in the Netherlands is based on the libertarian concept of autonomy, which is conceived as a negative right. It sets limits for others to protect individuals from interference, it articulates what others are not allowed to do, and coercing people is unacceptable under normal circumstances (Ten Have & Gordijn 2001). Within this conception autonomy is generally conceived as an ability to self-govern (Olsen 2003). Patients suffering from Korsakoff’s syndrome are seen as autonomous persons. As long as the Korsakoff’s syndrome is not officially diagnosed and they do not pose a danger to themselves or others, they cannot be admitted involuntarily into an institution. Meanwhile, however, they are physically deteriorating and lose a sense of dignity. Family members who

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took the responsibility to care for their relative received no recognition from healthcare professionals. The painful truth is that when no care is offered, the relative will die. Carers use another conception of autonomy in which the goal is to preserve the relative’s dignity. This concept fits a relational conception of autonomy as described by the moral theory known as ‘ethics of care’. Care ethicists question the idea of self-sufficiency and independence as the main value for human living. Instead, they focus on values such as attentiveness, trust, and responsiveness to need (Tronto 1993; Kittay 1999; Sevenhuijsen 1998; Held 2006; Herring 2007; Barnes & Brannely 2008). As Carol Gilligan explains: ‘Taking the ideal of care as an activity of relationships, of seeing and responding to need, taking care of the world by sustaining the web of connection so that no one is left alone’ (Gilligan 1984, 73). This perspective offers openings for humanization (Clement 1996; Herring 2007). Olsen (2003) described a change from the rights-based autonomy approach to a relational approach as ‘a change in emphasis and perspective rather than a change in content. The relational approach removes emphasis from defining objective rules for the application of forced treatment, to moral appraisal of situations. This turns to an assessment of how the available choices serve to value and enhance the human dignity of the particular patient in the specific situation’ (Olsen 2003, 710). To understand the impact of available choices, critical self-reflection is a necessity. Only those who are close to a patient can interpret if the patient’s choices are established through critical self-reflection. Within the context of our study an involuntary admission can be seen as an unjustified paternalistic interference from a rights-based perspective. However, this study shows that without help the quality of life of patients suffering from Korsakoff’s syndrome declines below an acceptable level. From a relational point of view, respect for autonomy in this kind of situations means that coercive admissions should be made possible. Patients suffering from Korsakoff’s syndrome do not have realistic ideas about their own health or illness. Carers’ relational knowledge is necessary to shed a light on the patient’s situation and history, thus making clear that the patient’s decision to reject care is made none autonomously. Rejection is inherent to the Korsakoff’s syndrome and results in an immoral dehumanizing situation. If society wants patients suffering from Korsakoff’s syndrome to be cared for, the liberal rights based conception of autonomy should be supplemented by a relational conception of autonomy. Of course we must prevent unwarranted paternalistic interference. But not only values such as sovereignty and freedom should be fostered, but also values such as attentiveness, trust, and responsiveness to need. Our data show that patients’ dignity and interdependency is of much more importance than the dangers of interference out of respect for a patient’s independency. In healthcare practice this means that healthcare professionals should take carers’ knowledge seriously when they apply for an involuntary admission of their relative, and the Dutch government should do well to provide financial resources to re-enforce carers’ positions. It would help if legislation were to provide a framework to enable healthcare

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professionals to interfere in situations in which patients’ dignity is decreasing, a network of advocates for them is lacking, and when they cannot rely on others’ interpretations of their self-explanations anymore.

Conclusion Family carers play a pivotal role during the admission process for a relative suffering from Korsakoff’s syndrome. They have to achieve imposition of care whilst trying to reduce serious risks. Carers’ responsibilities conflict with current healthcare practice as they may have perspectives on autonomy that differ from the views of healthcare professionals. This results in a vacuum when care is needed for patients suffering from Korsakoff’s syndrome. Healthcare professionals cannot coerce patients suffering from Korsakoff’s syndrome into an institution without patients’ consent. Only when others are harmed due to the Korsakoff’s syndrome, they can apply for a legal mandate and an involuntary admission can be arranged. Family carers see a decline in the quality of life and their relative’s dignity. Without professional care the relative is bound to die. The vacuum can be diminished by promoting a shared relational view of autonomy. This would have serious consequences for legal and professional care procedures. These procedures would depend more on family carers’ knowledge. Then, because timely and more appropriate coerced care assistance can be provided, we may expect gains in terms of saving lives and improving dignity and well-being.

Limitations of the Study Two potential limitations to this study should be addressed. Firstly, this study recruited a sample of family carers with a relative admitted to special Korsakoff units in the Netherlands. The findings of this study can only be used to shed light on the meaning of the experiences of this specific participant group. Secondly, recruitment through key clinicians may have produced an atypical sample of family members, namely those who are still concerned about their relative.

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Chapter 5 Ethical considerations of the value of patient knowledge in long-term care. A qualitative study of patients suffering from Korsakoff’s syndrome

Published as: van den Hooff, S.L. & Goossensen, A. (2015). Ethical considerations of the value of patient knowledge in long-term care. A qualitative study of patients suffering from Korsakoff’s syndrome. Nursing Ethics. 22(3): 377-388.

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Ethical considerations of the value of patient knowledge

Abstract Aim: This study explores experiences of patients suffering from Korsakoff’s syndrome. It contributes to improved reflection on the value of patient knowledge. Background: An ethics of care perspective states the importance of moving to patients in their vulnerable state of being, and to figure out patients’ individual needs necessary to provide good care. The information given by patients suffering from Korsakoff’s syndrome might be mistaken, invented and even not true. The value of these patients’ experiences and knowledge had not been researched to date. Method: Data from six interviews were analyzed concurrently through the constant comparative method. Ethical considerations: The principles of voluntariness, confidentiality and anonymity were respected during the research process. Findings: Four important themes within patients’ knowledge emerged: health condition, involuntary admission into the nursing home, the daily routine and interpretation of the caring abilities of healthcare professionals. The findings show that our respondents were able to provide a window into their inner perspective. Conclusion: This study deepens our understanding of the value of patient knowledge in situations where patients see the world in a different manner as do healthcare professionals. The conversations revealed personal subjective knowledge which our respondents create and live by. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not be prepossessed due to the diagnosis or general nursing home rules. Understanding patients’ unique knowledge through appreciation of the complexity and richness of different views on the situation can assist to give a more humane response to individual needs and pain. Health staffs in healthcare institutions are encouraged to evaluate the – unintended – effect of rigidly applied nursing home rules, and the government is challenged to rethink its policy about care, and provide more resources permitting relational care that nurtures the dignity of patients suffering from Korsakoff’s syndrome.

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Recognition of the patient’s voice is considered of great value in both nursing practice and qualitative research to ensure a firm foundation for the development of care relationships; to understand needs, experiences and values and to increase shared decision-making and treatment commitment (Lees 2011; Krikpatrick 2008; Niven & Scott 2003). These relationships are crucial in moral theory known as ‘the ethics of care’ that focuses on interdependencies in the context of relations, actions, virtues and emotions. Within healthcare relations, the ethics of care especially pays attention to physicality, vulnerability and tragedy of the patient (2013b). According to the ethics of care, genuinely listening to patients with compassion, openness and acceptance of the other is crucial for effective healthcare. Healthcare professionals’ attentiveness is seen as a first important step to reach this, followed by responsibility, competence and responsiveness (Tronto 1992). Without attentiveness, patients’ needs cannot possibly be addressed. ‘This attentiveness is a difficult task, and indeed a moral achievement’, according to Tronto. A lack of attentiveness may even cause harm, because care is not provided in time or not attuned to the other’s position as the other expresses it, both on a daily and on a long-term basis (Nortvedt et al. 2011; Martinsen 2011). Only when healthcare professionals achieve a state of open attentiveness, they will be able to be in line with the logic of each individual patient, and understand the patients’ needs, feelings, emotions, values and respond to them in a humane dignified way (Nussbaum 2013). Attentiveness and well-tuned care nurture dignity. If humans fail to maintain dignity, they are likely to suffer (Sayer 2011, 189). Dignity as a concept within nursing and clinical fields such as long-term care practices is described as complex and multifaceted (Edlund 2002; Pleschberger 2007; Gallagher et al. 2008; Sayer 2011; Walker 2011; Leget 2013a; Lindwall et al. 2012; Manookian et al. 2014). One way to describe dignity is in terms of social dignity, which is generated in action and interaction. Two types of social dignity are distinguished: dignity of self and dignity in relation (Jacobson 2007). In caring situations, relational dignity refers to transferring respect and worth through communication and expression; it is socially constructed by the act of recognition. A study of Manookian et al. (2014) suggests that effective communication can uphold patients’ dignity. Communication has impact on patients’ comfort and confidence. Another important factor influencing patients’ dignity in that study was devoting enough time to interactions (Gallagher et al. 2008; Manookian et al. 2014; Lindwall et al. 2012). Patients’ dignity is enhanced when nurses are able to connect with patients and allow themselves to be touched by patients’ stories, see the patients’ unspoken wishes to be listened to and have the will to meet the patients’ expressed needs in their present situation (Lindwall et al. 2012, 575). We are studying this care ethical perspective on good care among patients suffering from Korsakoff’s syndrome who are admitted involuntarily in a nursing home. Korsakoff’s syndrome is a chronic neuropsychiatric condition, characterized by a severe memory disorder 77

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resulting from acute Wernicke’s encephalopathy mostly secondary to chronic alcohol abuse and concomitant thiamine deficiency (Gerridzen & Goossensen 2014). These patients lack insight into their own illness and are reluctant to receive care, which are symptoms of the syndrome (Kolb & Whishaw 1985; Arts 2004). They can tell stories that are moving, insightful and revealing, but their stories can also be mistaken or invented. Patients suffering from Korsakoff’s syndrome are often admitted involuntarily. The Dutch Compulsory Admission Act (BOPZ) is applicable in case of an involuntary admission to general psychiatric hospitals, psychiatric departments of general and teaching hospitals, nursing homes and institutions for the intellectually disabled. The fact that patients are diagnosed as patients suffering from Korsakoff’s syndrome or that they are under guardianship or a mentor does not exclude competence in specific situations (Legemaate 1994). The decision of incompetence according to Dutch law is an appreciation by the physician of patients’ choices or decisions in a specific context. This study, which is part of a larger study on this patient group, addresses the following questions: Can the personal knowledge of patients suffering from Korsakoff’s syndrome be taken seriously to identify their needs? What is the value of this knowledge? The value of these patients’ knowledge has not been studied to date (Westin & Danielson 2007). In this article, the concept of ‘knowledge’ is understood, first, as ‘personal subjective knowledge’, containing everything a person knows, experiences and believes about a situation from his own vantage point. Second, it is understood as ‘general justified true knowledge’. This knowledge is based on general reliable facts and beliefs and seems true for the majority of people in a certain cultural or social status group, for example, healthcare professionals. The main objective of this study is to contribute to improved reflection of the value of knowledge of difficult to understand patients, such as patients suffering from Korsakoff’s syndrome, in day-to-day long-term care.

Method Design This study is qualitative in character and finds its roots in a grounded theory influenced approach. It uses a semi-structured interview approach (Patton 2002). This approach is well suited for studying complex and hidden processes. Data collection Data collection focused primarily on patients’ experiences during their time in a nursing home after involuntary admittance. Patients were asked to describe their current experiences. The interviewer gave little guidance about content, by using one simple question as an opening: ‘Can you tell me something about your experiences in the nursing home?’ This technique permits patients to give a free response and to voice their concerns (Dickson-Swift et al. 2006). The interviewer was allowed to ask spontaneous follow-up questions (Jakobsen & Sorlie 2010). The interviews were quite similar to natural conversations; they were of a 78


‘focused conversations’ nature (Street 1995; Aranda 2001). At a certain point, patients started to repeat information already told, which tendency is due to their mental condition. At that moment, the conversations came to an end. The interviews usually took around 20 minutes and were conducted in the nursing homes. The six interviews were recorded on audio tape and transcribed verbatim afterwards by the same researcher (S.H.) to aid recall, to ensure consistency and accuracy of reporting, thus strengthening the rigour of the study, and to adhere to ethical principles of confidentiality of the data (Beech et al. 2011).

Six patients suffering from Korsakoff’s syndrome were purposefully selected with the use of the strategy of typical case sampling, aiming at selecting information-rich patients (Patton 2002). Through key informants in the network of the Korsakoff Knowledge Center, we had access to various nursing homes with special units for involuntary admitted patients suffering from Korsakoff’s syndrome. The Korsakoff Knowledge Center aims at developing knowledge, practice and skills in the widest possible sense for patients suffering from Korsakoff’s syndrome. All participants were selected by healthcare professionals on the basis of the following predetermined criteria: first, availability of an informal carer, kin or non-kin, willing to participate in the study; second, physically and mentally able to conduct a conversation with the researcher. The participants’ characteristics are summarized in Table 1. The carers’ experiences during the care-seeking period are described in another part of the overall study. Respondent

Age of patient (at date Dec 2012)

Gender patient

Admitted in nursing home since:

Duration of interview

(A)

53

Female

May 2011

17 minutes

(B)

70

Male

February 2011

17 minutes

(C)

58

Female

November 2012

37 minutes

(D)

54

Male

August 2011

28 minutes

(E)

62

Male

May 2004

11 minutes

(F)

55

Male

November 2011

17 minutes

Table 1. Participants’ characteristics Table 1. Participants’ characteristics

Data analysis Like all data in our larger study on this patient group, current data were collected and analyzed concurrently through the constant comparative method, consistent with a classic grounded theory approach. The merits of a classic grounded theory approach depend on the precise methods adopted and the position a researcher takes, into and close to the real world, so that the results and findings are grounded in the empirical world (Patton 2002). Classic grounded theory is meant to build theory, however, and therefore we refrained from applying it, and instead unravelled the data with the use of the inductive analytical tools 79

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provided by the Qualitative Analysis Guide of Leuven (QUAGOL). The QUAGOL is inspired by the constant comparative method of the grounded theory approach (Dierckx de Casterlé et al. 2012). Its framework of references navigated us from phase to phase systematically, without the intention of developing a theory. This ‘grounded’ way of analyzing fits to an ethics of care research approach. It can provide insight into what good care can be for specific patients in specific situations or care practices. The six transcribed interviews were first thoroughly read several times in order to familiarize with the data and getting a sense of the interview as a whole (S.H.). Second, the interviews were analyzed by using an open coding method, supported by Altas.ti software. In open coding, each line of text was examined, read several times, and meaning units were identified and subsequently coded. Memos and comments were written to aid the transparency of the analytical process and verifiability of the research. The data analysis was critically reviewed by one research supervisor and peer reviewers from the University of Humanistic Studies, Utrecht. Ethical considerations This study did not need to be submitted to an accredited Medical Research Ethics Committee for approval as conforming to the Dutch Act of Medical Research Involving Human Beings (WMO10). Legal advice was that medical research comes within the scope of the WMO when patients are subjected to special proceedings or behavioural rules are imposed, which is not applicable to our research. We however obtained approval from the participating nursing homes and all interviewed patients, and their informal carers received a letter containing information about the study. As others reasoned, one may argue that it is problematic to ask people who are involuntarily admitted to an institution because of vulnerability or ‘lack of mental capacity’ to take part in a study (Szmukler & Appelbaum 2008; Larsen & Terkelsen 2014). However, our participants appeared fully competent to talk about their experiences; they even enjoyed the interview. It gave them an opportunity to express their feelings. Participation was voluntary. Contact details of the researchers were supplied to allow participants to gain further information. At the beginning of the interviews, all patients and family members or other representatives gave their written consent to participate. All gathered material has been treated anonymously.

Findings Our participants shared their experiences and opinions about their health condition, talked about their admission in the nursing home, the daily routine in the nursing home and their interpretation of the caring abilities of the nursing home doctors, nurses and care home workers (in Dutch: ‘woonbegeleiders’). Data analysis revealed four important themes within patients’ knowledge. 10

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In Dutch: Wet Medisch Wetenschappelijk Onderzoek met mensen.


Knowledge about health condition Patients suffering from Korsakoff’s syndrome do have a personal subjective understanding of their health condition: I have epilepsy, which is the reason why I came here. I need care when I take a shower; I am afraid I get a seizure and will fall. Hence I need care, because of my epilepsy (patient [C]) Patient [C] is indeed suffering from epilepsy. However, this was only part of the reason for the admission. In her home situation, she was physically deteriorating and her house was getting filthy; she could not care for herself anymore. She lacks insight into her own illness and consequently tries to find a plausible explanation for the admission. Another patient told,

Due to this lack of insight into their illness, the personal subjective knowledge of patients suffering from Korsakoff’s syndrome on their health condition is not based on facts of the actually diagnosed syndrome. However, from the respondents’ perspective, their personal knowledge is true. They claim that they are not ill and want to go home, which is not confirmed by the healthcare professionals who disregard this knowledge, simply because it is objectively not true. Respondents can become uncertain, confused, angry and, when not properly understood, even aggressive: There must come an end to this. It has been nice. It has been long enough. I have to get a chance to return to society. [ . . . ] I do not know how long I have to stay here. It is an open book, I do not know, it can be half a year or a year, I do not know. It gives me an uneasy feeling. (Patient [A]) Knowledge about involuntary admission Respondents are not aware that they need long-term care and do not understand the need for an involuntary admission. They still think that they are able to manage a life outside the nursing home; they formulate plans for the future and seek for hope. However, most respondents will not be able to live outside the nursing home ever again; their admission is seldom temporarily: I want to take care of my children again. Half the time. The other half my ex-wife takes care of the children. That is something I really want. I am going to try to find some voluntary work, because I have to do something when I am back home. Maybe in a nursing home for the elderly or in child care. That is that I am thinking about. (Patient [D]) 81

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I had an accident, that is the reason I came here. It had to be. I did not admit myself on a voluntary basis. That is not the issue. (Patient [A])


Respondents do not understand why their freedom is limited. They have very real concerns about their detention. This causes episodes of anger and rebelliousness due to the tension between their personal subjective knowledge about the detention and the responses of healthcare professionals. Respondents feel that nobody is really listening to their point of view: I really feel like I am behind bars. I have always been on the right side of justice, I send people to prison who had done evil. After the first day in prison, I visited them to inquire about their situation and how they felt. I also feel kicked behind a fence, so it feels, but nobody looks at me that way. [ . . . ] I am so angry. I am very upset. I think that’s a nice word. Upset and outraged [ . . . ] nobody ask me anything. (Patient [D]) Knowledge about daily routines Respondents appear to have realistic knowledge about the nursing home rules and are aware that their institutionalization requires a coerced living in a group: I am admitted and I have to keep up to the schedule. It’s very simple. I do not have my own opinion anymore. I have to walk with the group. Doing this at this time, doing that at that time. (Patient [A]) Disadvantage for me is the living in a group, I am not that kind of person actually. Everything is done together. Together breakfast, together diner. That hurts me the most. (Patient [C]) Everyone is interfering with you, you should do this, you should do that and you should do it now. Look, when you live alone, you can decide for yourself. (Patient [F]) Respondents are imprisoned, although they are not classified as criminals. Their autonomy is affected, and they are seen as incompetent individuals. In some institutions, respondents have to wear digital bracelets giving signals when crossing certain lines on the nursing home grounds. This respondent feels treated like a child and reports humiliation: Last week I went walking on the grounds of the institution. I saw a bench with unobstructed view, so I thought I just sit there for a moment and enjoy the view. After 10 minutes two guards ran up to me, and said: ‘You cannot sit here’. I said: ‘I cannot sit here, why not?’ ‘Well you crossed the invisible fence and the beeper in your shoe went off’. As a result I feel very restricted in my freedom here. Damn, I look like a criminal. (Patient [D])

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If healthcare professionals just follow the institutional rules, this can cause pain, frustration and disappointment. These general rules are made to apply to everyone equally and are not attuned to the individual patient’s desires or wishes. Patients are not allowed to live their own way of life anymore, following their own standards and values. This is experienced as infantilization by the patient. Patients are not allowed to decide for themselves, even not on minor issues: Sometimes it is personal arbitrariness. For instance, the food. I always ate three pieces of bread. The cheese and ham is in a package with two slices. The nurses said: ‘Only one slice of cheese is allowed on a piece of bread’. I said: ‘I am sorry, but I am used to have two slices’. They said: ‘Well you are not at home anymore’ [ . . . ] I do not care if the staff has an opinion, but for them it is a law. They coerce me to follow the rules. (Patient [F])

Respondents describe their experiences coping with the healthcare professionals in dayto-day situations. They observe responses of healthcare professionals that are not attuned to their individual vantage point. Respondents do not understand why their questions are ignored. They feel not being seen well and report disappointment in some cases: They are allowed to give advice. Some nurses become angry when I do not shave myself. As a result I become recalcitrant. I will not shave for some weeks! They should look at themselves first. (Patient [F]) It’s just a little thing, I asked if I could have my own coffee machine in my room. I was not allowed to. But it was allowed in the house I lived before. So I thought, it would be okay. It gives me an opportunity to drink coffee without the group, if I can make a cup of coffee in my own room. But these are the rules of the house, I have to adjust myself I think (tears in her eyes [S.H.]). (Patient [C]) Professionals draw assumptions about what they hold to be significant, when listening and interpreting patients’ individual requests. Significant in this situation is that patients suffering from Korsakoff’s syndrome have memory problems. This means that all patients’ requests are interpreted as an element of their brain damage. Respondents experience that their sadness, pain and suffering are not optimally recognized, which hurts: I signed in for the daily activities. I have done that three times. I had to cut paper edges, I had to remove staples that were accidentally spilled in a barcode, remove staple and another staple back in. And another potty activity. I noticed that I came back grumpy. [ . . . ] I said that these are not the right activities for me. I am disappointed in this institution. They do not see the qualities of their patients. [ . . . ] There are many types

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of people here. One was a construction worker, the other was a professor. They both got into trouble. But this construction worker can remove staples, but you should not let a professor do that kind of things. [ . . . ] Every person is different. (Patient [D]) Patients also do have positive experiences when healthcare professionals do listen to them and see them as competent human beings: I like to paint. X, who works here, has ensured that I might get a private room. There are some paintings, made by me, exposed upstairs. They liked them and put them on show. (Patient [E]) To prevent a seizure, I administer 10 drops of my medicine to my cheek, because that is the place of the body where the medicine works the fastest. I can decide by myself whether or not I need that medicine. (Patient [C])

Discussion The findings of this study reveal that patients suffering from Korsakoff’s syndrome can provide a window into their inner world during focused conversations. These conversations improved our understanding of the value of their knowledge. Analysis of the conversations gave insight into their knowledge and vantage point within the healthcare situation and shed light on the way respondents see, interpret and respond to the care they receive. The received care was not always perceived as ‘good care’. Defining care in terms of patient experiences boils down to the following definition of good care: ‘care experienced as good care by the patient’. Therefore, even if healthcare professionals argue that they have provided good care, they can hardly claim that is was indeed good care (Vosman & Baart 2011) if patients experience distress and mental suffering, like our respondents did. Not all of their needs were met. The four themes that emerged from our data address type and content of respondents’ knowledge about their own health condition, the involuntary admission, daily routines and about the caring abilities of healthcare professionals. Starting point for this discussion is that healthcare professionals try to give well-intended care based on their insight and professional knowledge about Korsakoff’s syndrome. However, care provision may also increase the suffering of patients (Dierckx de Casterlé et al. 2011). Our respondents felt derecognized when their personal subjective knowledge about their own health condition and the involuntary admission was not given careful consideration. They felt unheard and treated as a disease (see Table 2). Disease, as opposed to illness, can be described as the healthcare problem seen from the healthcarers’ perspective (Kleinman 1988). It is bounded within the context of diagnosis, treatment and cure and care principles connected to healthcare for any particular ailment. ‘Illness’ on the other hand is a term that goes beyond the confines of healthcare and into the practical world of the lived experience of the disease (Kleinman 1988). If healthcare

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Themes within patient knowledge

Quotes

Is patient knowledge on these issues objectively true or not true?

Patient reactions to the healthcare workers response.

Patients are not aware that they are suffering from Korsakoff’s syndrome. Patients are not aware that they need longterm care.

How do patients interpret the response of healthcare workers on their knowledge? Healthcare workers do not listen to me, ignore my point of view. Healthcare workers limit my freedom without a reason.

Knowledge about my health condition

“I had an accident, that is the reason I came here.”

not true

Knowledge about my admission

“I can manage a life outside the nursing home and will go home soon”

not true

Knowledge about daily routines

“I find it difficult to eat in a group every day.”

True

Patients are aware that they have to obey the nursing home rules. Patients are aware of the depersonalised reactions of professionals.

Healthcare workers treat me as an incompetent human being. Healthcare workers do not always recognize my qualities or grief.

Adjustment Acquiescence Frustration

Knowledge about the caring abilities of healthcare workers

“I would like more empathy. It feels like they are not genuinely listening to me.”

True

Uncertainty Confusion

Anger Rebelliousness

Disappointment Sadness

professionals are able to give more recognition to patients’ lived experiences, they would see them as unique, non-substitutable persons and beings of need (Ferrarese 2014, 145). Then, patients’ needs and suffering can be disclosed, permitting care to be fine-tuned to these needs. A possible explanation for the non-recognition of patients’ experiences could be the existence of a categorizing, medical view of patients, which results in a reductionist communication style (Goossensen 2011). Martinsen (2006) referred to this as the ‘recording eye’ of the healthcare professional, which relates to the putting of one’s self in an outside position and classifying the situation or person. In contrast, healthcare professionals should use a ‘perceiving eye’, which implies striving for participation of the lived experience of the other, where sensations and emotions are included in the understanding. Seeing only with a recording eye can lead to missing particular patients’ needs, especially those that are not easily articulated (Martinsen 2011). This can have a negative impact on patient’s well-being, self-respect and experiences of dignity. In Grypdonck’s (2011) view recognizing patients means ‘accepting them as they are, unconditionally’, and ‘knowing them as persons with hopes for the future and desires for the present’ (pp. 93–94). Till now, the assumption was that the inner world of patients suffering from Korsakoff’s syndrome is difficult to understand; as a result of brain damage, their experiences do not match the professionals’ knowledge – patients and professionals live in two different worlds. However, our respondents were able to talk about their world from their own logic and could express their wishes and desires. By listening to patients’ stories, seeing their pain and interpreting their expressions, healthcare professionals could gain better recognition of this unique, individual perspective of patients. When healthcare professionals disregard or are not responsive to these expressions, trust and care will deteriorate. 85

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Table 2. Patient knowledge Table 2. Patient knowledge


Our respondents were extremely vulnerable; their own knowledge about the world they live in is undervalued. This causes harm during their admission, because their needs and experiences are not recognized or brushed aside as being unimportant. The information respondents’ shared with regard to the nursing home rules and the caring abilities of healthcare professionals contained general justified true knowledge. It can be objectively recognized that patients have to obey nursing home rules and that healthcare professionals have to apply these. Rankin and Campbell (2014) stated in this respect, ‘What happens is rarely an ‘‘unintended consequence’’ but usually the product of an entirely institutional set of practices organizing how nurses are being instructed to respond to patients’ (Rankin & Campbell 2014, 159). Healthcare professionals are tied to specific healthcare legislation, institutional regulations, general nursing home rules and team appointments, which might hinder them to be sensitive to the particularity of situations and patients. However, as the impact of a particular rule can be dehumanizing for a patient due to their particular circumstances and vulnerabilities, deviating from this rule might well contribute to their well-being. Accommodating space for the recognition of patients’ needs, pain, experiences, wishes and desires will enable to trust patients (Nortvedt et al. 2011; Sayer 2011). Putting trust in patients may encourage their sense of dignity. Our respondents reported positive experiences if their dignity was nurtured. Being recognized as a competent, moral, trustworthy person allowed them to act without direct control, even if this concerned only minor issues. As our data point out, recognizing the value of patients’ personal subjective knowledge helps to shed light on patients’ specific suffering. It offers clues to healthcare professionals to better understand the feelings of refusal and neglect of patients suffering from Korsakoff’s syndrome and to respond more accurately to their worries and needs, even if these stem from a lack of insight into the illness. The reason why attentiveness is not always present in day-to-day care to patients suffering from Korsakoff’s syndrome and ways to stimulate more attentiveness deserve to be studied in detail. Improved sensitivity and relational tuning to patients could be part of a solution. Through relational caring, professionals may exhibit a better understanding of their patients’ view, whereby the patients are perceived not as an ‘object to be known’ or an ‘object with a disease’ but as fellow human beings with a full range of emotions, needs and possibilities (Sevenhuijsen 1998; Barnes & Brannelly 2008; Woods 2012). When patients perceive that their view is really seen and heard, then feelings of neglect and humiliation could diminish. To gain more recognition of relational caring, its impact should be recognized at an institutional and political level too. This impact underlines the necessity to rethink the current situation of patients within long-term coerced care. It is the responsibility of society to take care of all its citizens. Patients suffering from Korsakoff’s syndrome are in an extremely vulnerable situation and the necessary financial resources should be made available to accomplish the transition to real good relational caring, which can be achieved through education and research.

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From an ethics of care perspective, patient knowledge is an important source to understand what good care can be in certain situations. Due to memory problems and the impossibility of insight into their own brain damage, patients suffering from Korsakoff’s syndrome shape their understanding of the world. Healthcare professionals are encouraged to discover and affirm the understandings of these patients and not be prepossessed due to the diagnosis or general nursing home rules. Flat interpretation of organizational rules and privileges may lead to reductionist view of patients and their possibilities, leading to care that is humiliating and that neglects patients’ needs. If patients’ requests are rejected, attentiveness can help to see and affirm the pain of not being heard. Understanding patients’ unique knowledge, even if this knowledge is objectively not true, can assist to give a more humane response to individual needs and pain, through appreciation of the complexity and richness of different views on the situation. This may improve humanity in care for this specific group of patients. Professionals within healthcare institutions are encouraged to evaluate the – unintended – effect of rigidly applied home rules, and the government is challenged to rethink its policy about care and provide more resources to accomplish relational care that nurtures the dignity of patients suffering from Korsakoff’s syndrome.

Limitations First, although the interviews were carefully and critically evaluated, interpretation of the interview data depends on individual skills and interpretation of the researchers themselves. Data could be interpreted differently by other researchers. Second, due to the small number of participants and the notion that the study results represent only the specific population sampled, the findings can be used only to shed light on the meaning of the experiences of this specific participant group. However, the reliability of this kind of study lies in the recognition of others. When healthcare professionals recognize the presented data, the knowledge gained from this study may serve as a basis for discussion and raising awareness (Ricoeur 1986; Jakobsen & Sorlie 2010).

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References Aranda, S. (2001). From individual to group:use of narratives in a participatory research process. Journal of Advanced Nursing. 33(6): 791-797. Arts, K. (2004). Het syndroom van Korsakov. Een uitgave van het Landelijk Platform Korsakov [Korsakoff’s syndrome. A publication of Korsakoff Knowledge Center] Nijmegen: F.E. Mac Donald. Barnes, M. & Brannelly, T. (2008). Achieving care and social justice for people with dementia. Nursing Ethics. 15(3): 384-395. Beech, A., Arber, A., & Faithfull, S. (2011). Restoring a Sense of Wellness following Colerectaral Cancer: a Grounded Theory. Journal of Advanced Nursing. 68(5): 1134-1144. Dickson-Swift, V., James, E.L., Kippen, S., & Liamputtong, P. (2006). Blurring Boundaries in Qualitatieve Health Research on Sensitive Topics. Qualitative Health Research. 16(6): 853-871. Dierckx de Casterlé, B., Gastmans, C., Bryon, E., & Denier, Y. (2012). QUAGOL: A guide for qualitative data analysis. International Journal of Nursing Studies. 49(3): 360-371. Dierckx de Casterlé, B., Verhaeghe, S.T.L., Kars, M.C., Coolbrandt, A., Stevens, M., Stubbe, M., Ceweirdt, N., Vincke, J., & Grypdonck, M. (2011). Researching lived experience in health care: significance for care ethics. Nursing Ethics. 18(2): 232-242. Edlund, M. (2002). Menniskans verdighet: ett grunnbegrepp innom vardvetenskapen [The Dignity of Human Beings: a Basic Concept in the Science of Care] Abo: Abo Akademis Forlag. Ferrarese, E. (2014). The shared premised of the ethics of care and theories of recognition: Vulnerability as moral category. In: Care, Compassion and Recognition: An Ethical Discussion, vol.1. Leget, C. Gastmans, & M. Verkerk, eds., Herent: N.V. Peeters S.A., pp. 143-161. Gallagher, A., Li, S., Wainwright, P., Rees Jones, I., & Lee, D. (2008). Dignity in the care of older people- a review of the theoretical and empirical literature. BMC Nursing. 7(11). Gerridzen, I.J. & Goossensen, M.A. (2014). Patients with Korsakoff syndrome in nursing homes: characterististics, comorbidity, and use of psychotropic drugs. International Psychogeriatrics. 26(1): 115-121. Goossensen, A. (2011). Zijn is gezien worden. Presentie en reductie in de zorg. [Being is being seen. Presence and reduction in healthcare]. Tilburg University. Grypdonck, M. (2011). Ethics of care, asymmetry, recognition, pity and self-management. In: Care, Compassion and Recognition: An Ethical Discussion, Leget, C. Gastmans, & M. Verkerk, eds., Herent: N.V. Peeters S.A., pp. 89-100. Jacobson, N. (2007). Dignity and health: a review. Social Science & Medicine. 64(2): 292-302. Jakobsen, R. & Sorlie, V. (2010). Dignity of older people in a nursing home:narratives of care providers. Nursing Ethics. 17(3): 289-300. Kleinman, A. (1988). The illness narratives: Suffering, healing and the human condition. New York: Basic Books. Kolb, B. & Whishaw, I.Q. (1985). Fundamentals of Human Neuropsychology, 2Edn. New York: W.H. Freeman and company. Larsen, I.B. & Terkelsen, T.B. (2014). Coercion in a locked psychiatric ward: Perspectives of patients and staff. Nursing Ethics. 21(4): 426–436. Lees, C. (2011). Measuring the patient experience. Nurse Reseacher. 19(1): 25-28.

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Ethical considerations of the value of patient knowledge Legemaate, J. (1994). De rechtspositie van wilsonbekwame patiënten: stand van zaken [Legal status of mental incompetent patients: state of affairs]. Tijdschrift voor Gezondheidsrecht. 6: 118-127. Leget, C. (2013a). Analyzing dignity: a perspective from the ethics of care. Medicine, Health Care and Philosophy. 16: 945-952. Leget, C. (2013b). Zorg om betekenis. Over de relatie tussen zorgethiek en spirituele zorg, in het bijzonder in de palliatieve zorg Care for meaning. [On the relationship between care ethics and spiritual care, especially in palliative care]. Utrecht: University of Humanistic Studies. Lindwall, L., Boussaid, L., Kulzer, S., & Wigerblad, A. (2012). Patient dignity in psychiatric nursing practice. Journal of Psychiatric and Mental Health Nursing. 19(7): 569-576. Manookian, A., Cheraghi, M.A., & Nasrabadi, A.N. (2014). Factors influencing patients’ dignity: A qualitative study. Nursing Ethics. 21(3): 323-334. Martinsen, E.H. (2011). Care for Nurses Only? Medicine and the Perceiving Eye. Health Care Analysis. 19(1): 15-27. Niven, C.A. & Scott, P.A. (2003). The need for accurate perception and informed judgement in determing the appropriate use of the nursing resource: hearing the patient’s voice. Nursing Philosophy. 4(3): 201-210. Nortvedt, P., Hem, M.H., & Skirbekk, H. (2011). The ethics of care: role obligations and moderate partiality in health care. Nursing Ethics. 18(2): 192-200. Nussbaum, M. C., (2013). Lecture in The Hague on Thursday 28th of June. Kennis & Wetenschap, NoordHollands Dagblad, p.14. Patton, M.Q. (2002). Qualitative Research & Evaluation Methods, 3 ed. Thousand Oaks, London, New Delhi: Sage Publications. Pleschberger, S. (2007). Dignity and the Challenge of Dying in Nursing homes: Residents’ View. Age and Ageing. 36(2): 197-202. Rankin, J. & Campbell, M. (2014). Care and gender in nurses’institutionally organized work. In: Moral Boundaries Redrawn. The Significance of Joan Tronto’s Argument for Political Theory, Professional Ethics, and Care as Practice, vol. 3 G. Olthuis, H. Kohlen, & J. Heier, eds., Herent: N.V. Peeters S.A., pp. 153-173. Ricoeur, P. (1986). Time and narrative Chicago, University of Chicago Press. Sayer, A. (2011). Why Things Matter to People. Social Science, values and ethical life. New York: Cambridge University Press. Sevenhuijsen, S. (1998). Citizenship and the ethics of care: feminist considerations about justice, morality and politics. London: Routledge. Street, A. (1995). Nursing replay. Researching nursing culture together. Melbourne: Churchill Livingstone. Szmukler, G. & Appelbaum, P.S. (2008). Treatment presuures, leverage, coercion, and compulsion in mental health care. Journal of Mental Health. 17(3): 233-244. Tronto, J.C. (2004) What Feminists learn about Marality from Caring?. In: Ethics: The big questions, J. B. Sterba, ed., Oxford: Blackwell Publishing. Vosman, F. & Baart, A. (2011). Relationship based care and recognition. Part two: good care and recognition. In: Care, Compassion and Recognition: An Ethical Discussion, vol.1. Leget, C. Gastmans, & M. Verkerk, eds., Herent: N.V. Peters S.A., pp. 201-227.

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Ethical considerations of the value of patient knowledge Walker, M.U. (2011). Humane dignity. In: Care, Compassion and Recognition: an Ethical Discussion, Leget, C. Gastmans, & M. Verkerk, eds., Herent: N.V. Peeters S.A. Westin, L. & Danielson, E. (2007). Encounters in Swedisch nursing homes:a hermeneutic study of residents’ experiences. Journal of Advanced Nursing. 60(2): 172-180. Woods, M. (2012). Exploring the relevance of social justice within a relational nursing ethics. Nursing Philosophy. 13(1): 56-65.

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Chapter 6 Healthcare professionals’ dilemmas: judging patient’s decision making competence in day-to-day care of patients suffering from Korsakoff’s syndrome.

Published as: van den Hooff, S.L. & Buijsen, M. (2014). Healthcare professionals’ dilemmas: judging patient’s decision making competence in day-to-day care of patients suffering from Korsakoff’s syndrome. Medicine, Health Care and Philosophy. 17(4): 633-640.

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Abstract Patient’s decision making competence (PDMC) is a widely discussed subject. Issues of competence, autonomy, well-being and protection of the patient come up every day. In this article we analyze what role PDMC plays in Dutch legislation and what dilemmas healthcare professionals may experience, notably in patients suffering from Korsakoff’s syndrome. Dilemmas emerge if professionals want to meet the requirements mentioned in Dutch law and the desires of their patients. The autonomy of the patient and the healthcare professionals’ duty to take care of their patient’s best interests, create a tension and lead to uncomfortable situations. Healthcare professionals describe difficulty finding a balance between these issues and assessing the degree of mental competence still present. In long-term care situations, quality of the relationship between healthcare professionals and their patients seems to be of much more importance in decision making on minor issues of competence than simply relying on legal or house rules. In being committed to their cases, professionals will be more sensitive to individuals habits, abilities, welfare and dignity, which will make it easier to decide on issues of competence, and to find creative solutions to their dilemmas.

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A patient’s decision making competence (PDMC) is a widely discussed subject. Literature has been published about the issue of PDMC, assessment of PDMC and its consequences in law and healthcare practice (including Appelbaum & Grisso 1988; Gendreau 1997; Kitamura et al. 1998; Dekkers 2001; Holm 2001; Berghmans et al. 2004; Nys et al. 2004; Struhkamp 2005; Broström 2007; Welie 2008; Doorn 2009; Beauchamp & Childress 2013). In this article we analyze what role PDMC plays in Dutch legislation and what dilemmas healthcare professionals may experience, notably in patients suffering from Korsakoff’s syndrome. Korsakoff’s syndrome is a chronic neuropsychiatric condition, characterized by a severe memory disorder resulting from acute Wernicke’s encephalopathy mostly secondary to chronic alcohol abuse and concomitant thiamine deficiency (Gerridzen & Goossensen 2014). Especially these patients’ lack of insight into their own illness is of importance in the context of PDMC (Doorn 2009, 96). Insight should not only be defined in terms of people’s understanding of their illness, but also in terms of understanding how the illness affects their interactions with the world (Marková & Berrios 1992, 855–856). Patients suffering from Korsakoff’s syndrome generally cannot understand the relevant care information and the impact on daily care of this information. They are reluctant to receive care, which is not the same thing as being incompetent. This reluctance is a symptom of the syndrome: patients are not aware of the memory disorder and therefore reject the care offered. A gap exists between the extensive theoretical reflections about PDMC on the one hand, and unavailability of practical solutions for healthcare professionals of how to deal with PDMC in day-to-day care situations on the other. Issues of competence, autonomy, well-being and protection of the patient will come up every day. Healthcare professionals describe difficulty finding a balance between these issues and assessing the degree of mental competence still present. It seems not easy, it takes time and energy and it requires commitment to find this balance and to assess the remaining degree of competence (Timmermann et al. 2012, 19–21). The main aim of this paper, therefore, is to explore the dilemmas healthcare professionals experience in daily practice when PDMC might be an issue, in the context of long-term care for patients suffering from Korsakoff’s syndrome. In the Netherlands, specialized longterm care facilities cater for patients suffering from Korsakoff’s syndrome. The dilemmas at hand were explored by means of a group discussion with eleven healthcare professionals employed in such nursing homes. This study is part of a larger project in which data were collected through a semi-structured interview approach in order to explore the experiences of family carers, patients, and healthcare professionals during the involuntary admission of patients suffering from Korsakoff’s syndrome. In this article we firstly, reflect on the legal and moral background of PDMC. Secondly, explain relevant Dutch law, and finally elucidate professionals’ dilemmas.

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Introduction


Legal and moral backgrounds Legal questions with regard to PDMC especially concern the protection of persons who lack decision making competence in treatment and research decisions, and the authority of proxy decision makers as well as procedural issues aiming at responsible and just decision making (Berghmans et al. 2004). Philosophical and ethical debates on PDMC primarily concern the concept of mental competence or decision making competence and the values involved. Within moral theory, ‘the ethics of care’ takes obligations to individual persons within relationships to be the cornerstone of its normative framework. Care ethicists first and foremost assert this is grounded in relational ontology (Nortvedt et al. 2011, p. 192). The concept of autonomy is criticized as the ideal of self-sufficiency. The ideal of self sufficiency rests on the idea that a good life is a life in which we do not need the help or support from anyone in meeting our needs (Doorn 2009). Care ethicists stress that in emphasizing the ideal of independency values such as trust, caring and responsibility are neglected in the moral discourse. Moral competency is then not to be seen in isolation from other persons and relationships; autonomy as a moral competency can only be developed in relation to others (Verkerk 2001, 291). The concept of competence in decision making is closely connected to perspectives on autonomy. As Beauchamp and Childress (2013,116) noted, ‘‘Although autonomy and competence differ in meaning, (autonomy meaning self-governance, competence meaning the ability to perform a task or range of tasks) the criteria of the autonomous person and of the competent person are strikingly similar’’. The fundamental moral and medico-legal concept of competence is grounded in the doctrine of informed decision making, which stipulates that patients must be competent in order to make valid and authoritative health related decisions (Secker 1999). The doctrine of informed consent is based on the volenti non fit injuria principle, which states that a person is not harmed by acts of others which he or she has consented to (Feinberg 1986). It is generally accepted that patient’s rights include not only the right to accept treatment but also to refuse or to terminate treatment. The doctrine of informed consent has been widely accepted and the patient’s right to self-determination is highly respected (Kitamura et al. 1998; Berghmans et al. 2004). The doctrine of informed consent is enshrined in international legal documents. The European Convention for the Protection of Human Rights and Fundamental Freedoms (ECHR) plus related case law is perhaps the most developed body of international law dealing with the rights of mentally incompetent patients. In addition there are various recommendations of the Council of Europe, EU directives (Welie et al. 2005) and UN conventions, such as the UN Principles for the Protection of Persons with Mental Illness (MI principles, UN A/RES/46/119, 1991). The MI principles set out 25 principles devoted to the protection of human beings diagnosed as mentally ill and recognized as particularly vulnerable (Gendreau 1997). Principle 11 establishes that no treatment may be carried out without informed consent (Zuckerberg 2007).

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A substantial body of literature has been published regarding the definition of PDMC. Appelbaum & Grisso (1988) were the first to describe elements related to decisional capacity: the ability to communicate a choice, the ability to understand the relevant information, the ability to appreciate a situation and its consequences, and the ability to reason rationally. Others state that a patient or research subject is competent to make a decision if he or she has the capacity to understand the relevant information, to make a judgement about the information in the light of his or her values, to envisage a certain outcome and to freely communicate his or her wish to caregivers or researchers (Beauchamp & Childress 2013, 116). Welie & Welie (2001, 133) described four specific qualities and abilities on which a patient’s decision making about his or her own healthcare should rely on: (1) the ability to acquire and retain cognitive content; (2) the ability to manipulate cognitive content critically; (3) freedom of will; (4) the ability to express oneself. It is not quite clear how these abilities can be assessed. Beauchamp and Childress (2013) think it necessary to take into account patients decision-making and information processing skills, their skills at weighing a particular situation, their insight into their own illness and their self-knowledge during assessment of competence. Patients do need insight into their own norms and values on the basis of which they take a decision (Doorn 2009, 32–34). Contextual considerations should also be taken into account when assessing competence and the decision should be reviewed in the light of the rest of the person’s life (Doorn 2009, 74). The NVVA, a professional association of nursing and social geriatricians in the Netherlands, has issued basic rules for assessing competence (see Textbox 1.). Nevertheless assessing competence remains a discretionary decision of the professionals, dependent on their interpretation and expertise (Welie 2002).

Textbox 1: Basic rules for assessing competence (NVVA professional association of nursing and social geriatricians, 2008) — Assess the relevant mental competence. It needs to be assessed and re-assessed for each new decision (depending on the diagnose). — The presumption of competence needs to be adopt. — A specific diagnosis can never answer the question of competence. — The requirements of an assessment are higher when the decision at issue has more important potential health effects. Greater demands on the decision skill is requested (proportionality principle).

If patients have been found incompetent to decide about healthcare matters or place of residence, this does not necessarily entail that they are totally incompetent or that all their decisions can be overruled without giving any further justification (Holm 2001). Extra protection for the patient is embedded in the so-called presumption of competence: it is not mental competence, but mental incompetence that should be demonstrated and evaluated in each new situation. This presumption also implies that there is no justification for a

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categorical approach of incompetence, such as for a specific group of patients. We will clarify this with an interview fragment. The coffee machine The patient described is an involuntarily admitted woman living on a long stay unit within a nursing home specialized in the care of patients suffering from Korsakoff’s syndrome. She has extensive gaps in her memory, damaged executive functions and is not able to live independently anymore. She had been neglecting herself and her home, hardly had relationships anymore and had serious health problems. Without intervention she would probably have died. Till then she had been avoiding professional care. Nevertheless, her informal caregiver persevered in seeking appropriate professional healthcare, and eventually an involuntary admission could be arranged. Apart from the above-mentioned symptoms, her demeanour is quite normal; she has a normal IQ, is alert and attentive. She related an experience in the nursing home to the interviewer/researcher. This interview was part of the larger study. It’s just a small thing; I asked if I could have my own coffee machine in my room. It was not allowed. But I was allowed to have one in the house I lived in before. So I thought, it would be okay. This way I could drink coffee without the group, because I do not like to be in a group of people. It gives me more freedom having the possibility to make a cup of coffee in my own room and having the choice to invite someone to my room. But these are the rules of the house. I have to adjust I think. [she becomes emotional, cries (SH)]. Does this case deal with the issue of competence? The decision to deny this woman to have her own coffee machine could have been based on general fire prevention house rules. Or alternatively it could have sprung from the generalization that all patients suffering from Korsakoff’s syndrome are incompetent to handle a coffee machine. Staff had never witnessed a negative experience concerning this patient handling a coffee machine. In this particular situation, we do not know the true reasons behind this house rule. Leave it be said that this decision made the woman unhappy; it reduced her enjoyment of life. The decision affects her right to self determination. If the decision was based on the general assumption that all patients are incompetent to handle the machine, then the issue of competence is at stake. The next crucial question is: Is this particular patient, due to her memory problems, incompetent to handle a coffee machine or is she still competent in that regard? Healthcare professionals expressed their dilemmas regarding this topic during a short unstructured group discussion, which we will discuss after explaining relevant Dutch law.

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In the Netherlands two acts are applicable to the legal position of individuals during hospitalization, treatment and care in nursing homes. The Dutch Compulsory Admission Act (BOPZ) is applicable in case of an involuntary admission to general psychiatric hospitals, but also in case of involuntary admission to psychiatric departments of general and teaching hospitals, to nursing homes and to institutions for the intellectually disabled. This act dictates three criteria governing compulsory admission. Firstly, the patient does not agree with admission. Secondly, he presents a danger to himself or others as a consequence of his mental condition. Thirdly, there is no reasonable alternative for the compulsory admission. In the BOPZ mental competence plays only a limited role. Compulsory treatment of both mentally competent and mentally incompetent patients is justified if this is the only way to avert danger. The distinction between competent and incompetent patients is more significant in the Medical Treatment Contract Act (WGBO), which is part of the Dutch Civil Code (CC). As far as care in nursing homes is concerned, the WGBO is applicable, firstly, to patients who are admitted voluntarily into a nursing home, and, secondly, to involuntarily admitted patients in relation to issues that the BOPZ does not deal with. The WGBO focuses on actions in the area of medical treatment, and nursing home care is included in the context of this treatment. The WGBO requires an informed consent to perform actions included in the treatment contract (article 7:450 WGBO) and the BOPZ requires a plan of care (article 38 BOPZ) describing how and to what extent day-to-day care is delivered. Moreover, the plan of care describes a patient’s preferences, potentialities, needs and limitations as well as goals of and agreements on care and welfare for the forthcoming period to ensure the best possible quality of life. The WGBO allows a healthcare professional to act against the will of a patient only if the patient is (temporarily) incompetent and if the professional is convinced that non intervention will lead to ‘‘a severe worsening’’ of the patient’s (medical) condition. The healthcare professional has to inform the patient on the proposed treatment options and clinical policy. He has to try convince him of the benefit thereof in order to receive the patient’s consent or— in case of incompetency—that of his representative. The law holds healthcare professionals liable if they do not comply with these requirements. The WGBO determines who can act as representatives. The first possible representative is a Court-appointed guardian or mentor, the second an agent in writing; this is a person authorised by a competent patient to act on his or her behalf in case of incapacity. Thirdly, the spouse, registered partner or other partner, and lastly, a parent, child, brother or sister can act as such. However, with respect to subsequent treatment decisions, a patient’s incompetency still needs to be established. The fact that the patient is under guardianship or that a mentor has been appointed, does not exclude competence in specific situations (Legemaate 1994). PDMC is described in the WGBO as an open norm: patients, who are not considered to be able to reasonably judge their own interests in respect to the decision or situation that 97

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is at issue, are considered incompetent for that decision or situation (article 7:465 WGBO). This means that PDMC from a legal point of view primarily refers to the way patients achieve their decision. PDMC according to Dutch law is not a feature of patients, but an appreciation by the physician of patients’ choices or decisions in a specific context. From the patients’ perspective, the legal consequence of being considered competent is that they can exercise their patient rights themselves, whereas being considered incompetent entails that someone else should act for them. In the Netherlands, patients suffering from Korsakoff’s syndrome can be admitted into nursing homes both voluntarily and involuntarily. A small sample of four nursing homes indicated that more than half (respectively: 60, 96, 40 and 71 % per institution) of the patients (n = 254) suffering from Korsakoff’s syndrome were voluntarily admitted (van den Hooff and Goossensen 2011). A possible BOPZ-title for involuntary admission does not determine the choice of a particular long-term care unit. Both voluntary and involuntary patients can stay on the same unit. This means that both acts, WGBO and BOPZ, may be applicable to patients of different status at the same unit. Hence, the legal position of the majority of these patients in nursing homes is regulated by the WGBO.

Dilemmas of professionals As a consequence of the fact that patients with a different legal status stay on the same unit, healthcare professionals working in nursing homes act on the basis of care needs of their patients instead of their legal admission title. This practically means that coercion and involuntary care are used on voluntarily and involuntarily admitted patients alike. As indicated in the introduction, eleven healthcare professionals employed in nursing homes specialized in the care of patients suffering from Korsakoff’s syndrome were asked to express their dilemmas on the subject of competence/incompetence. This took place during a short unstructured group discussion at a conference of the Dutch Korsakov Knowledge Center. This center aims at developing knowledge, practice, and skills in the widest possible sense for patients suffering from Korsakoff’s syndrome. All professionals gave permission to audiotape the discussion. This meeting provided participants with the opportunity to consider their own dilemmas in the context of the views of others (Patton 2002). We will now describe the dilemmas mentioned. Competent to consent to the plan of care? Is a patient suffering from Korsakoff’s syndrome competent to sign the plan of care or provide informed consent? On this issue a healthcare professional said: In my opinion patients suffering from Korsakoff’s syndrome are not incompetent on all issues described in the plan of care. On some issues the patient is able to give consent, on others he is not. How do I decide on which parts the patient is competent and on which parts he is not? If the patient is unwilling to give his written consent to the entire

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As mentioned above, both voluntary and involuntary patients can stay on the same unit. In practice this means that care plans will be drawn up for each of these patients. The starting point for the plan of care is that patients themselves suggest how their quality of life in the nursing home can be supported optimally. This results in individual agreements concerning care and services that are recorded and evaluated. Patients suffering from Korsakoff’s syndrome claim that they are not ill and most of them want to go home. Therefore they tend to be unwilling to compose and consent to the plan of care. The dilemma the above-cited healthcare professional related bears upon the question: ‘How to decide whether the patient is competent to discuss the components of the plan of care, if the patient does not want to co-operate?’. The plan of care describes issues concerning the medical treatment, but also minor details such as smoking or shower agreements. If these patients do not want to co-operate, probably due to their lack of insight into their own illness, does this mean that these patients are totally incompetent and that healthcare professionals can act against the will of these patients on all components of the plan of care? Rarely can a patient be judged incompetent with respect to every sphere of life or more specifically with respect to every item of the plan of care. Competence may vary over time, may be intermittent and may be situation specific (Beauchamp & Childress 2013, 115–117). The big dilemma in the perception of the professional is that as long as patients or representatives have not given their consent the plan of care cannot formally be executed, because the law does not give sufficient room for care and treatment without consent. Competent to decide to smoke? The question if the patient is competent enough to decide to smoke, sheds light on dilemmas professionals are facing when having to choose between favouring a patient’s health related interests and respecting the patient’s own preferences. A healthcare professional shared the following dilemma: Very practical, our smoking policy. Often our patients smoke a lot. I wonder: ‘Do I have the right to intervene there?’ Smoking is harmful to health, but that kind of unhealthy behaviour also suits these patients’ old habits. Patients will be very unhappy when I forbid them to smoke. Do I have the right to intervene here and forbid smoking or are patients competent enough to take their own decision on this subject? Healthcare professionals have questions about the competence of their patients regarding health issues. Is the patient competent enough to decide on living an unhealthy life in the

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plan of care, may I conclude that this patient is totally incompetent? When should I consult family members or other representatives and on which parts of the plan of care? Deciding on the latter could be very time-consuming.


nursing home? Most patients suffering from Korsakoff’s syndrome are serious smokers. It is a remnant of their former way of life and their sensitivity to addiction. Are they incompetent to decide on this issue because they show behavioural symptoms such as disinhibition (Gerridzen & Goossensen 2014) and clearly have a memory disorder? Due to their memory problems they often ask for a cigarette after they have just finished one. Is it the professionals’ duty to protect their patients and provide an environment as healthy as possible, which most probably will prolong their lives? In this case, should they act against the will of patients and coerce them to stop smoking or to smoke less, and thus diminish their joy of life? Or alternatively, should they focus on the patients’ current ‘perceived’ quality of life and allow them to smoke as many cigarettes as they want, with the consequence of a much shorter life perspective? Competent to effectuate certain wishes? Some patients have unrealistic wishes they want to fulfill. For example, a healthcare professional told us: It is very difficult to judge if someone is competent or not. I do not see myself as competent to judge this. I had a patient who wanted to go on a holiday trip to a country he had lived in a couple of years. I thought ‘why not, let him go, he is not happy here’. He was able to talk and write. However in practice he could probably not manage. Should I give him this opportunity or should I protect him and let him feel miserable the rest of his life? Patients still think and hope that they can manage to live a life outside the nursing home. They make plans for the future. However, most of them will not be able to live outside the nursing home ever again, because they will drink themselves to death in the home situation. A professional expressed this dilemma as a choice between, on the one hand, discussing impracticable and unrealistic wishes and, on the other hand, honestly tells that the wishes cannot come true and destroy their hope for a better future. Most patients suffering from Korsakoff’s syndrome have impairments in executive functioning and will forget to care for themselves outside the institution. Should all patients be protected in view of the supposition that none is competent enough to manage life outside the institution?

Discussion The dilemmas described above especially relate to what we would consider minor issues in day-to-day care situations. Some difficulties in dealing with issues of competence in practice may derive from an incorrect interpretation of legal requirements among healthcare professionals. For example, the legal requirement of informed consent for the plan of care is often interpreted, or misinterpreted, as written informed consent, requiring the patient’s signature. However, consent may also be provided verbally or nonverbally. This

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misinterpretation can lead to unnecessary frustration of professionals and patients. Firstly, professionals feel the urge to seek written consent from their patients. Patients suffering from Korsakoff’s syndrome will almost always say they do not wish to give their consent to the nursing or caring agreements. Nevertheless, in day-to-day care situations they often do not reject the offered care. If professionals acknowledge that they can rely on this nonverbal consent, they may feel less inclined to first seek written consent before providing the necessary care. Secondly, if patients do not give their consent, then the patient has to be represented. This requires a decision of incompetence. According to Dutch law this is an appreciation by the physician of patients’ choices or decisions in a specific context. This means that each patient must be individually assessed on whether they are incompetent or not, and—if they are found to be incompetent—on which issues. Only if healthcare professionals conclude that patients are incompetent, they can act against their wishes if these wishes should have immediate negative impact on the medical condition. The act of declaring patients incompetent to deal with certain issues can have a major negative impact on the patients’ self esteem. If patients perceive that their wishes are overruled due to the declaration of incompetence, they feel that they are not being listened to, they experience powerlessness, humiliation, and awareness of not being seen or disrespect (van den Hooff & Goossensen 2014). An example of this dilemma is the smoking policy. It is generally known that a smoking habit can lead to severe physical problems. Patients suffering from Korsakoff’s syndrome feel the urge to smoke all day from long-established habit. When professionals in the nursing home act against the will of their patients, for example by allowing them to smoke only a couple of cigarettes a day, they will probably diminish patients’ well-being. It is a human right to health that professionals be responsive to needs and acknowledge different life-styles. From an ethics of care perspective, a professional’s relationship with a patient has a value greater than caring instrumentally for his or her medical needs. Professionals’ responsibilities also include respect for a patient’s unique otherness as a person (Nortvedt et al. 2011). This could be a reason not to regulate smoking behaviour upon admission to the nursing home. In the case of the patient who would like to have a coffee machine in her room, this wish was overruled although her competence on this matter was not assessed. She lost some of her autonomy, probably owing to nursing home rules or for the sake of the caregivers’ ease of mind. General rules in day-to-day care are convenient, as it saves time not having to check in every room whether a coffee machine is turned off. Still it would seem appropriate to reconsider ingrained house rules: what are the reasons to incorporate them in the first place and what are the unexpected side effects on the patients’ well-being? Isn’t it true that exceptions should be possible, based upon a patient’s particular vulnerability and strengths? In some instances there could be good reason to treat patients unequally (Nortvedt et al. 2011). The woman quoted above should be allowed to have her own coffee machine if she is deemed competent to handle this machine. Then she could leave the group for a moment,

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as is her dearest wish, and manage one aspect of her life herself. Assessing competence always carries the risk that patients will erroneously not be taken seriously and be classified as incompetent, which can be understood as the adding of suffering and disrespecting this patient’s autonomy. If patients are deemed to be incompetent, professionals should look for alternative solutions to meet patients’ wishes. In this example, a thermos in the woman’s room could be one of the easiest solutions. Healthcare professionals should realize that deciding on PDMC is not a process of individual and rational calculation, but part of a more encompassing meaning-giving process (Dekkers 2001). This process requires effort and care, imagination and perceptiveness, which involves an interpretative process in the realm of a dialogue. Professionals have to look at dilemmas in different ways, trying to find new perspectives they have not thought of before. Especially in long-term care, professionals learn within their relationship with their patients in day-to-day care giving. In genuinely making contact, being really connected to others, a sense of safety and coherence can exist (Hem & Pettersen 2011). Needs, interests and abilities of the patients can be better understood. Taking these into account will reduce the risk of erroneously deciding on competence issues, and safeguard patients’ welfare and dignity.

Conclusion In long-term care situations, quality of the relationship between healthcare professionals and their patients seems to be of much more importance in decision making on minor issues of competence in daily care than simply relying on legal or house rules. Some of the dilemmas professionals are faced with might be taken away if they were better educated on the actual meaning of the law in day-to-day care reality. Assessing PDMC remains an individual estimation of professionals. Most probably no single rule will ever be able to relieve professionals from their obligation to personally assess preferences and decisions of the possibly incompetent patient, like Holm concluded in a study of elderly with dementia (Holm 2001). Professionals should be aware that their patients are vulnerable and dependent. In being committed to their cases, professionals will be more sensitive to individual habits, abilities, welfare and dignity, which will make it easier to decide on issues of competence, and to find creative solutions to their dilemmas.

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References Appelbaum, P.S. & Grisso,Y. (1988). Assessing patients’ capacities to consent to treatment. The New England Journal of Medicine. 319(25): 1635–1638. Arts, K. (2004). Het syndroom van Korsakov. Een uitgave van het Landelijk Platform Korsakov [Korsakoff’s syndrome. A publication of Korsakoff Knowledge Center]. Nijmegen: F.E. Mac Donald. Beauchamp, T.L. & Childress, J.F. (2013). Principles of biomedical ethics. 7th ed. New York: Oxford University Press. Berghmans, R., Dickenson, D. & and ten Meulen, R. (2004). Mental capacity: In search of alternative perspectives. Health Care Analysis. 12(4): 251–263. Broström, L.J.M.N.M.K. (2007). What the patient would have decided: A fundamental problem with the substituted judgement standard. Medicine, Health Care and Philosophy. 10(3): 265–278. Dekkers, W.J.M. (2001). Autonomy and dependence: Chronic physical illness and decision-making capacity. Medicine, Health Care and Philosophy. 4(2): 185–192. Diamond, R.J. (1995). Coercion in the community: Issues for mature treatment systems. New Directions for Mental Health Services. 66(Summer): 3–18. Doorn, N. (2009). Wilsbekwaamheid, weldoen, autonomie, identiteit [Mental competence, beneficence, autonomy, identity]. Amsterdam: Boom. Gendreau, C. (1997). The rights of psychiatric patients in the light of the principles announced by the united nations: A recognition of the right to consent to treatment? International Journal of Law and Psychiatry. 20(2): 259–278. Gerridzen, I.J. & Goossensen, M.A. (2014). Patients with Korsakoff syndrome in nursing homes: Characterististics, comorbidity, and use of psychotropic drugs. International Psychogeriatrics. 26(1): 115–121. Gevers, J.K.M. (2010). Gezondheidsrecht: Ontwikkelingen en refelecties [Health Law: Developments and reflections]. Tijdschrift voor Gezondheidsrecht. 5: 363–371. Hem, M.H. & Pettersen, T. (2011). Mature care and nursing in psychiatry: Notions regarding reciprocity in asymmetric professional relationships. Health Care Analysis. 19(1): 65–76. Holm, S. (2001). Autonomy, authenticity or best interest: Everyday decision-making and persons with dementia. Medicine, Health Care and Philosophy. 4(2): 153–159. Kitamura, F., Tomoda, A., Tsukada, K., Tanaka, M., Kawakami, I., Mishima, S. & Kitamura, T. (1998). Method for assessment of competency to consent in the Mentally ill. Rationale, development and comparison with the medically ill. International Journal of Law and Psychiatry. 21(3): 223–244. Kolb, B., and I.Q. Whishaw. (1985). Fundamentals of human neuropsychology. New York: W.H. Freeman and company. Legemaate, J. (1994). De rechtspositie van wilsonbekwame patie¨nten: Stand van zaken [Legal status of mental incompetent patients: State of affairs]. Tijdschrift voor Gezondheidsrecht. 6: 118–127. Marková, I.S. & Berrios, G.E. (1992). The meaning of insight in clinical psychiatry. British Journal of Psychiatry. 160: 850–860. McCubbin, M. & Weisstub, D.N. (1998). Toward a pure best interests model of proxy decision making for incompetent psychiatric patients. International Journal of Law and Psychiatry. 21(1): 1–30.

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Chapter 7 Healthcare professionals under pressure in involuntary admission processes

Published as: van den Hooff, S.L., Leget, C. & Goossensen, A. (2015). Healthcare professionals under pressure in involuntary admission processes. Nursing Philosophy. 16(4): 177-186.

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Healthcare professionals under pressure

Abstract The main objective of this paper is to describe how quality of care may be improved during an involuntary admission process of patients suffering from Korsakoff’s syndrome. It presents an empirically grounded analysis with different perspectives on ‘doing good’ during this process. Family carers’, healthcare professionals’ and legal professionals’ ways of understanding and ordering this problematic situation appear very different. This could prevent patients from getting the proper care they need, with risk of more suffering and quality of life below the minimum acceptable. All this possibly lead to immoral dehumanizing situations. Firstly, the background of our empirical study is sketched. Secondly, the different perspectives on ‘doing good’ are summarized and compared. Thirdly, the tensions arising from the different conceptualizations of autonomy and different types of responsibilities of the actors are clarified. A common ‘doing good’ during involuntary admission necessitates removal of any tensions within the relational network by weighing and balancing the different perspectives on autonomy and the resulting responsibilities. With this in mind we propose a renewed time/action table for involuntary admission, which tends to address all patients’ needs at the right time. The solution presented might help healthcare professionals, who are squeezed in between patients, family carers, legal professionals and overall rules, to create practices in which patients suffering from Korsakoff’s syndrome can maintain their dignity and receive the care they need. Earlier interventions, timely and adequate diagnosis and diminishment of tensions between the different actors by fine-tuning their paradigmatic frameworks are suggested to be part of a solution.

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It is known from literature that many psychiatric admissions are involuntary admissions requiring a formal legal mandate. Nevertheless, many of these admission decisions are coerced or imposed without the necessary legal authority (McCubbin & Weisstub 1998,3; Monahan et al. 1995; Feiring & Ugstad 2014). In the process towards a formal or informal involuntary admission, family carers, healthcare professionals and legal professionals, if necessary, come together in an impermanent network. They provide information, give advice or simply discuss healthcare possibilities. Often they have to decide on admission after having argued with each other the necessity of the involuntary admission in a particular case. Each network partner’s specific ‘mode’ of ordering the world or ‘discourse’ (Foucault 1971), by which is meant specific pattern of ideals, practices and knowledge (Pols 2003), then becomes apparent. They all have their own ideas of ‘doing good’, dependent on their own knowledge and perspective of the situation; the caring and juridical ways of ordering the world seems very different. Together they are challenged to change the situation of this patient for the better, either by resorting to legal measures or by improving care (Pols 2003). In the case of patients suffering from Korsakoff’s syndrome we have found, however, that they do not always get the care they need. This could prevent patients from getting the proper care they need, with risk of more suffering and quality of life below the minimum acceptable. All this could lead to immoral dehumanizing situations (van den Hooff & Goossensen 2015a). Things may go wrong in the ‘doing good’ network in the period between the onset of Korsakoff’s syndrome and actual admission into a long-term care institution. To our knowledge there are no studies that reflect on the different perspectives on ‘doing good’ of family carers, healthcare professionals and legal professionals in the process of involuntary admission of a patient suffering from Korsakoff’s syndrome. This study wants to investigate and disclose tensions that emerge from the different perspectives. How do these tensions affect ‘doing good’ during the admission process of patients suffering from this syndrome? The ultimate objective is to improve the quality of care and quality of life of these patients and possibly other patients without insight into their illness during involuntary admission processes. Before presenting the analysis of the different perspectives, we sketch the background of our empirical study.

Background The current paper is part of a larger project in which data were collected by means of qualitative semi-structured interviews to explore patients’, healthcare professionals’, family carers’ and legal professionals’ perspectives on involuntary admission of patients suffering from Korsakoff’s syndrome. Our responding patients receive group-living residential care in a long-term care facility, because cure of this syndrome is not possible. All other participants were related to one of these patients.

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We used the strategy of typical case sampling for purposefully selecting our information rich cases (Patton 2002). With cooperation of key informants in the Korsakoff Knowledge Center network, we had access to various nursing homes with specialized units for patients suffering from Korsakoff’s syndrome. This syndrome is a degenerative brain disorder caused by the lack of thiamine in the brain mostly secondary to chronic alcohol abuse and concomitant thiamine deficiency (Arts 2004; Kopelman et al. 2009). It can result in deficits in a number of areas of neuropsychological functioning including problem solving, executive dysfunction and ataxia (Wijnia & Nieuwenhuis 2010; Parsons 1998). Patients suffering from Korsakoff’s syndrome lack insight into their own illness and are reluctant to receive care, which are symptoms of the syndrome. The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) refers to Korsakoff’s syndrome as alcohol-induced persisting amnestic disorder, placed under the category of substance-induced persisting amnestic disorders (American Psychiatric Association 2000). However, guiding documents for the diagnosis are lacking (Halverson 2005; van den Hooff & Buijsen 2014a). Extensive diagnostics during inpatient treatment and a 4-6 week period of alcohol abstinence are required to establish whether a person is likely to suffer from Korsakoff’s syndrome (Goossensen et al. 2007; van den Brink and Jansen 2009). This abstinence period is necessary to neutralize the direct influence of excessive alcohol consumption on cognitive function and to support physical recovery (van Beemen et al. 2012). In this situation involuntary admission is essential (de Girolamo et al. 2008) because otherwise the patient is bound to leave the institution against clinical advice. Further details about the design, data analysis and results of our study can be found elsewhere (van den Hooff & Goossensen 2015a).

Different perspectives Based on our empirical study and analysis, the different perspectives on ‘doing good’ in the process of involuntary admission of persons suffering from Korsakoff’s syndrome are summarized and compared below. ‘Doing good’ from patients’ perspective The responding patients saw themselves as competent autonomous persons who could decide for themselves how they wanted to live their lives. They did not want a change in their situation. So ‘doing good’ from patients’ perspective meant to be free to take autonomous decisions about one’s own life, regardless of how others might decide. When care was actually offered patients still wanted to manage a life outside the institution and to receive help to execute their plans for the future. They wanted to be listened to and wished that others would recognize their situation (van den Hooff & Goossensen 2015b). One patient (008) said:

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“I want to take care of my children again. Half of the time. During the other half my ex-wife takes care of the children. That is something I really want. I am going to try to find some volunteer work to have something to do when I am back home. Maybe in a nursing home for the elderly or in child care. That is what I am thinking about.” If hopes like these were not realized, patients experienced feelings of injustice, powerlessness, humiliation, not being seen or disrespect (van den Hooff & Goossensen 2014b,8) ‘Doing good’ from family perspective

‘We really had a discussion on what to do next. Are we going to respect his wishes or shall we intervene? And what does this mean? How can we cope? Will we feel terribly guilty if he dies? We really talked about these kinds of things. Often. […] You must go on. Where are we going to? Often, we had that kind of conversation. And when you believe you finally have found care, they send him home, because he wants that. Actually, that was the worst moment for us. At that moment we did withdraw. If this is what you want, then do it. But not always at our expense. I held out for a while, but after one and a half week I was doing his shopping again. Then I thought, I cannot let him down, I just cannot. That was something I said when I was angry, but I just cannot.’ In the fight against the healthcare system, family carers needed to keep faith in achieving their final goal, that is to get access to healthcare resources to get good care for their relative. To accomplish this, family carers needed information about the illness and the healthcare system. The only long lasting solution from family carers’ perspective was to arrange an involuntary admission into a residential home with a specialized unit for patients suffering from Korsakoff’s syndrome. To this end, they must act and encroach upon the relative’s autonomy, by which is meant the relative’s existing idea that he is still competent to decide on how to live his life; he is not aware of any illness and does not want to receive care. Family carers try to convince the general practitioner, social welfare institutions, the hospital, police or other healthcare professionals of the urgent need for specialist care (van den Hooff

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The family carers who participated in our study had enduring relationships with their relative and often long histories of trying to arrange appropriate care. They had been recognizing the physical and mental deterioration of their relative, even fearing he or she would die. In many cases they would find their relative living in filthy conditions at home. ‘Doing good’ from family carers’ perspective appeared to consist of preventing death, further mental and physical deterioration and loss of dignity (van den Hooff & Goossensen 2015a). To act upon this, they had to acknowledge the situation their relative was in and the need of interference. A family carer (010) told:


& Goossensen 2015a,11).Their perseverance was grounded in their true belief that their relative would die without proper care. ‘Doing good’ from healthcare professionals’ perspective ‘Doing-good’ from healthcare professionals’ perspective often implied preventing further damage for patients and obtaining the necessary care. Healthcare professionals saw it as their moral duty to admit patients suffering from Korsakoff’s syndrome to an institution and to act for the patients’ benefit (Risjord 2014). Without care these patients will continue their old lives with alcohol abuse, further deterioration of mental and physical health, dignity loss, and possible death. These patients do not have realistic ideas about their own health or illness. Due to this lack of insight and the fact that they have a severe memory disorder they are not aware that they need long-term care. Without an involuntary admission these patients will physically and mentally deteriorate and finally, literally, drink themselves to death (van den Hooff & Goossensen 2015a, 2). Our healthcare respondents saw it as their moral obligation to do something about the suffering by reaching a diagnosis and try to improve the patients’ quality of life by offering a structured and friendly environment to live in. A healthcare professional (003) told: “At admission to the nursing home, patients are often malnourished and neglected. They cannot walk well or swallow properly. Most of them are in a bad shape due to their self-destructive behaviour. We devise a suitable treatment program for them and give care they actually need. For instance train them to take a shower every day. They get good food, physiotherapy and recuperate from the physical deterioration. For that matter, the brain will never get better”. ‘Doing good’ from legal perspective ‘Doing good’ from a legal perspective is dependent on the legal criteria used for involuntary admissions in national legislation. Within Europe these criteria vary. Often used criteria to regulate the use of involuntary admissions are “serious mental disorder”, “best interest”, “risk of harm”, and “need of treatment and care” (Feiring & Ugstad 2014, 2). In the Netherlands, involuntary admission is mandatory in cases of considerable danger to oneself or others due to a psychiatric illness, and only if no reasonable alternatives are available (Legemaate 1994; Salize et al. 2002). Usually Courts have to decide on this matter, though not in all European countries. For instance, Norwegian mental healthcare legislation does not require a Court verdict (Diseth et al. 2011). From our legal respondents’ perspective ‘doing good’ meant preventing harm to others and to protect individuals from undue interference in their independent life, which is achieved when law is upheld. Legal procedures should be followed, especially in the involuntary admission process. As long as individuals are not officially diagnosed with Korsakoff’s syndrome and do not pose a danger to themselves or others, they cannot be admitted

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involuntarily into an institution. They are seen as autonomous individuals. Competent addicts who refuse care should be left alone, unless the threat they pose to themselves or others is sufficiently grave to allow for coercive intervention (Janssens et al. 2004, 454). A legal professional told: “Sometimes there is an argument in Court, because the patient claims: ‘I just want to drink myself to death, I do not want to be hospitalized’. That is interesting. Is it possible to give this person the opportunity to reach this decision? I think so. I will argue for his right of self-determination and free will” (001, legal professional). From a legal perspective, treating patients as competent when in fact they are incompetent is preferable to treating patients as incompetent when in fact they are competent. The main goal of legal professionals is to protect patients from illegal interference.

Untangling the tensions: two themes

Autonomy Firstly, the conceptualization of autonomy appeared to differ between actors. Legal professionals approached ‘doing good’ from the traditional liberal view of autonomy. They considered patients to be free, self-governing agents who carry final responsibility for their own health. In this perspective, patients’ autonomous preferences should guide interferences. Patients are free to choose for themselves what norms and values they want to pursue, and are free to make decisions that are un-coerced and best express the outcomes of their own deliberative process (Christman 2004). Other persons have to defer to these choices, even when they diverge from the prevailing norms and values in society (Welie 2008, 13). When legal professionals represent patients in Court, they advocate patients’ autonomous preferences as guiding for interference in relation to the medical declaration and possible danger. In contrast, family carers in our study did not hold this traditional liberal view of autonomy. Their view of autonomy suggest a more relational concept of autonomy which removes emphasis from defining objective rules for the application of involuntary admission to moral appraisal of situations. This conceptualization acknowledges that people are

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The analysis of the different perspectives on ‘doing good’ brought to light the existence of tensions between the actors in the process towards an involuntary admission. There were disagreements on different matters: the way to accomplish an involuntary admission (legal mandate or not; tension 1), the required reason for an involuntary admission (preservation of dignity or prevention of danger; tension 2), recognition of the severity of the problem (early in the process or after some time; tension 3) and the degree of interventions (home care or residential long-term care; tension 4). Two themes emerged that might be helpful to clarify these tensions: autonomy and responsibility.


ignorant, vulnerable, interdependent individuals, whose strength and reality is not their autonomy, but their relationships with others (Meyer 2004). The moral theory known as ‘the ethics of care’ focuses on these interdependencies. It promotes a vision of people with mutually interdependent relationships as the norm around which legal and ethical responses should be built (Herring 2007, 66). We agree with care ethicists who question the idea of self-sufficiency and independence as the main value for human living. Respecting patient autonomy is an important value in healthcare but care ethicists, like family carers, do not see autonomy as some kind of ideal. ‘They seek to move away from an atomistic picture of individuals with rights that compete against each other, to a model that emphasizes the responsibilities of people towards each other in mutually supporting relations’, says Clement (1996, 11). As Carol Gilligan explains, ‘The ideal of care is thus an activity of relationships, of seeing and responding to need, taking care of the world by sustaining the web of connection so that no one is left alone’ (Gilligan 1984, 73). Family carers acknowledge that their sick relative, who is hardly aware of illness, is dependent upon them to accomplish care. In arranging care they tend to interpret the relative’s choices such that his or her dignity is valued and enhanced. This attitude may explain some tensions between family carers and legal professionals. To preserve the relative’s dignity, family carers strive for admission as soon as possible, even if this includes the overruling of the relative’s autonomous preferences. On the other hand, legal professionals primarily focus on their clients’ autonomous preferences. This may cause a delay in the actual ‘doing good’ from family carers’ perspective due to regulations based on the traditional liberal view of autonomy, with risk of further mental and physical deterioration of the relative. Healthcare professionals seem to occupy a middle position. Autonomy in clinical contexts is generally understood to refer to an individual patient’s authority over decisions affecting his or her own healthcare and body (Sherwin & Winsby 2010, 183). While patients are entitled to have their autonomous decision making respected, they must be sufficiently competent to make well-founded decisions that reflect their own values. So, coercing patients is unacceptable under normal circumstances. The decisions of properly informed, uncoerced competent patients are to be honoured (Beauchamp & Childress 2013). One of the moral principles in healthcare ethics is the requirement to secure patients’ voluntary and informed consent. Other principles are non-maleficence (a norm of avoiding the causation of harm), beneficence (a group of norms pertaining to relieving, lessening or preventing harm and providing benefits and balancing benefits against risks and costs) and justice (a group of norms for fairly distributing benefits, risks, and costs) (Beauchamp & Childress 2013, 13). For each individual patient, healthcare professionals balance these norms to arrive at the right course of action. For example, it may be necessary to give less weight to autonomy and more to non-maleficence. To conclude: we found that tensions exist between the actors in the involuntary admission process. It seems that these tensions appear to result from different conceptualizations of autonomy. Opponents of the traditional liberal view of autonomy (family carers) argue that

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an overemphasis on autonomy as the right to self-determination and competence of patients can cause harm: patients do not receive the care they need in time, because they seemingly do not pose a danger to themselves or others. On the other hand, opponents of the relational view of autonomy (legal professionals) argue that autonomy can be impeded unnecessarily on account of normative pressure placed on the patient by family carers. Patients should not be coerced regardless of how much they suffer as a consequence of their disease (Wynn et al. 2007). Healthcare professionals are caught in the middle of these tensions. On the one hand they must respond to the need for care, on the other hand prevent undue interferences.

From the conflicting conceptualizations of autonomy different types of responsibility emerge based upon the roles of the actors. The first type is the legal responsibility of legal professionals. They try to protect their clients from unjustified paternalistic interferences. Their responsibilities are upheld by law; law defines their responsibility. They guard over their clients, ensure that their client’s voice is heard and all the necessary legal criteria are met before involuntary admissions are justified. They recognize their clients as individuals with rights, especially the right to be independent and will try to prevent unjustified interferences and promote autonomy. The second type of responsibility is of another nature: personal responsibility. Family carers are personally responsible for their relatives, not because law says so, but because they are connected, feel compassion and suffer with them. From the way they act it is evident they want the suffering to end – preferably without further traumatisation so as to protect the relative’s dignity. Not seldom questions of life and death are at stake. To find solutions for problems encountered, family carers fight the healthcare system to get the necessary care as soon as possible. A third type of responsibility relates to healthcare professionals, who have a professional obligation to care for their patients and to comply with legal criteria and organizational policies. Besides, they have a medical responsibility for people who need care. Having professional knowledge, experience and insight of the actual situation, they are expected to protect patients against self-destructive behaviour and to alleviate suffering. Ignoring suffering would be wrong. Usually healthcare professionals try to keep a ‘sufficient distance, not being overly involved and being objective’ (Martinsen 2006). Their most important task is arriving at the correct diagnosis by means of thorough medical history taking and a clinical examination (Martinsen 2011). Ethical challenges are created when healthcare professionals are in doubt what to do in a given situation (follow the law and organizational policies or follow their responsibility), or when they cannot do what they think is the best thing to do (they want to intervene, but this is against legal criteria) (Hem et al. 2014). Healthcare professionals are supposed to help people or make decisions about them on the basis of individual cases, yet the structure of their jobs tends to make this impossible

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in some situations (Lipsky 2010). Healthcare professionals are tied to specific healthcare legislation, institutional regulations, general nursing home rules, team appointments and culture, routines and habits in the nursing home. In some cases they will then reformulate ways of fulfilling their responsibility: to do what is right for their patients. They create alternatives to circumvent legislation. They try to accomplish a coerced admission via other ways, such as manipulating the patient or not giving the patient all the necessary information (van den Hooff & Goossensen 2011). It is obvious that all actors in the process towards an involuntary admission have valuable responsibilities towards patients and that each of them has patients’ best interest at heart. How to deal with these responsibilities and the caused tensions? Another way to look at these tensions is from a sociological viewpoint. Conflicts can exist between actors when they have to go outside their jurisdictional boundaries, which involves questions of rights besides doing the necessary or desirable (Strauss 1985). For instance, it is a right of healthcare professionals to prevent harm to patients. During their inauguration they promise: “I will use treatment to help the sick according to my ability and judgment, but I will never use it to injure or wrong them (...)” (Hippocratic oath). On the other hand, it is a right of legal professionals to protect patients against unjustified admissions: “In the interest of justice the lawyer carries responsibility for the legal protection of his client” (article 10a Dutch Lawyer Act). Within the practice of involuntary admission or ‘arc of work’ as Strauss (1985) calls it, by which he means the totality of tasks, every actor is responsible for doing their assigned. Each of the actors in the involuntary admission process is trained or experienced in salient activities, characteristic of his or her respective occupational worlds, and brings that training and experience into the process. Whether this process goes smoothly or conflictfully is because the divergent lines of work characteristic of those different social worlds mix harmoniously or only with great tension and discord (Strauss 1985, 11). The greater a discrepancy in social world perspective and activity, the more obviously will there be a need for explicit negotiation among workers to get the joint or collective task accomplished with any efficiency (Strauss 1985, 11). How to accomplish this when the personal responsibility of family carers and the medical responsibility of healthcare professionals seem to require a coerced intervention in the patient’s life and the legal responsibility aims at protecting the patient against these coerced interventions?

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Overcoming tensions

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Our analysis suggests theoretical differences in main themes that explain tensions during the involuntary admission process of patients suffering from Korsakoff’s syndrome. As a result of these theoretical differences healthcare professionals become squeezed in between the patient, family carers, legal professionals and overall rules. Patients may be on the losing side therefore: undue interferences, negligence or harm might occur if no action is taken. From an ethics of care perspective, responsibility entails balancing considerations of care for a particular individual in a specific situation and context. A common ‘doing good’ during involuntary admission necessitates awareness of these tensions among all actors and a recognition of the need for explicit negotiation among them. This requires removal of any tensions within the relational network by weighing and balancing the different perspectives on autonomy and the resulting responsibilities. Each perspective values one ‘slice’ of understanding of the patient. Together they show us complementary perspectives on the whole patient, his situation, possibilities and impossibilities. With this in mind we redesigned the time/action table for an involuntary admission process in which we made the different actors owner of a particular stage in the process with the healthcare professional as the central coordinator (Figure 1). We present this graph as a way to weight and balance the different perspectives and responsibilities during the process and to open the discussion and negotiation between the different actors. This is not meant to be used rigorously, the idea of stepwise responsibilities for different actors can also be applied more flexible. In any case, the objective should be to improve quality of care during coerced admission and to foster humanity to patients who themselves resist care.

Figure 1. Process towardstowards an involuntary admission Figure 1. Process an involuntary

admission

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We suggest that a first necessity to accomplish this is organizing the involuntary admission process by rearranging the responsibilities in the process. The patient perspective is not inserted in Figure 2 because their influence in the decision making process is low due to their lack of insight into their illness. They do not want an admission. However the importance of their perspective is high when we realize that patients want to be heard and acknowledged. As much as possible may be done to avoid feelings of for instance injustice, powerlessness and humiliation, and professionals might always try to take into account the patient’s perspective during the decision making process. At the start of the decision making process, family carers are the key actors. They appear to be the closest to the patient and their depth of concern and moral appraisal of the situation make them the first to recognize and respond to the patient’s need. Family carers’ cry for help should be taken more seriously by healthcare professionals. However, even the closest family members sometimes make unacceptable decisions. As coordinator, a healthcare professional has the opportunity to recognize and help family carers, protect the patient and safeguard the patient’s interests and preferences where known. The authority of the family carer is not final or ultimate. A temporary admission to get the opportunity to diagnose the patient and to prepare a medical declaration might be a solution. The diagnosis of Korsakoff’s syndrome can usually appropriately be made after a 4-6 week period of alcohol abstinence (Goossensen et al., 2007; van den Brink & Jansen 2009). The legal criterion of causality between danger and psychiatric disorder may be loosened up at this point in time. So, we suggest some degree of latitude in organizational policy and legal criteria; by which is meant vagueness or open texture in what is required and possible, so as to allow healthcare professionals some discretion in what they can do (Provis & Stack 2004, 10). At his point in the process, legal professionals are asked to cede some ground and rely on healthcare professionals’ knowledge about the necessity of a temporary involuntary admission. Legal professionals lack medical knowledge and might overestimate the competence of these patients due to the behaviour of these patients. Patients suffering from Korsakoff’s syndrome appear quite normal, have normal IQs, and can be alert, intelligent and attentive, which makes it difficult to judge their competence (van den Hooff & Goossensen 2015a). Despite their intentions to serve the patients’ best interests, it might have a detrimental effect on the patient. These patients will most probably leave the institution against clinical advice without a temporary involuntary admission (Pulford et al. 2009). This form of exit is common in detoxification and substance abuse treatment. If Korsakoff’s syndrome is diagnosed or any other psychiatric disorder, a request for a Court hearing can be made to issue a legal mandate for an official involuntary admission. If not, the patient is free to leave the institution. At this point in the process legal professionals are the key actors; their role is to protect their clients against unjustified admissions. One of their responsibilities is to see to it that the legal criteria are met. Eventually, Court decides

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about the approval of the involuntary admission. While healthcare professionals still are coordinators of the process, it is likely that they behave in an involved way and stay tuned in to the legal professionals. This renewed route towards an involuntary admission tries to pay attention to all patients’ needs at the right time. Trying to fine-tune the paradigms, we hope to balance the different professional perspectives to maximize patients’ wellbeing. Earlier interventions, timely and adequate diagnosis become possible and tensions between the different actors may diminish. Of course this procedural solution is only part of a solution to try to improve the quality of care of patients during this process. Involuntary admissions remain precarious, because of serious restrictions of freedom and patients’ impressions of unjustified or harmful decisionmaking (Katsakou & Priebe 2006). Having said this, patients should always be placed central in this process. Even if their wishes cannot be met at short notice, they need to be listened to. When really difficult decisions have to be made in a situation where views widely diverge, actors should try to go beyond their own perspectives, take into account the patient’s perspective and try to find a solution that fits this particular patient most. The process towards an involuntary admission always will be characterized by a balancing of interests which require sensitivity to the particularity of situations and patients.

Our analysis suggests that different conceptualizations of autonomy and responsibility explain the existing tensions during involuntary admission processes of patients suffering from Korsakoff’s syndrome. This undermines their functioning as a constructive relational network during this process. A need exists to find ways to avoid undue interferences, negligence or harm. We suggested that this requires awareness of all parties about different focuses on good care. Reduction of tensions will be enabled by fine-tuning and connecting the different paradigms and valuing the responsibilities of the different actors at the right moments. An alternative route for managing good care during the process of involuntary admission of patients suffering from Korsakoff’s syndrome was proposed. This is not meant to be used rigorously, the idea of stepwise responsibilities for different actors can also be applied more flexible. In any case, the objective should be to improve quality of care during coerced admission and to foster humanity to patients who themselves resist care.

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References Arts, K. (2004). Het syndroom van Korsakov. Een uitgave van het Landelijk Platform Korsakov [Korsakoff’s syndrome. A publication of Korsakoff Knowledge Center; in Dutch]. Nijmegen: F.E. Mac Donald. American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders, Revised, 4th edn. Washington, D.C. Beauchamp, T.L. & Childress, J.F. (2013). Principles of biomedical ethics. Seventh edition. New York/ Oxford: Oxford University Press. Christman, J. (2004). Relational autonomy, liberal individualism, and the social constitution of selves. Philosophical Studies: an International Journal for Philosophy in the Analytic Tradition. 117(1/2): 143-164. Clement, G. (1996). Care, Autonomy and Justice: Feminism and the Ethic of Care. Boulder and Oxford: Westview Press. de Girolamo, G., Rucci, P., Gaddini, A., Picardi, A., & Santone, G. (2008). Compulsory Admissions in Italy. International Journal of Mental Health. 37(4): 46-60. Diseth, R.R., Bogwald, K.P., & Hoglend, P.A. (2011). Attitudes among stakeholders towards compuslory mental health care in Norway. International Journal of Law and Psychiatry. 34(1): 1-6. Feiring, E. & Ugstad, K.N. (2014). Interpretations of legal criteria for involuntary psychiatric admission: a qualitative analysis. BMC Health Services Research.14:500. Foucault, M. (1971). L’Ordre du Discourse [The Order of Discourse; in French]. Paris: Gallimard. Gilligan, C. (1984). In a different voice: Psychological Theory and Women’s Development. Cambridge MA: Harvard University Press. Goossensen, A., Arts, N. J., & Beltman, M. (2007). Zorgprogramma Korsakov in het verpleeghuis ‘Mij mankeert niks’ Care Program Korsakov in the Nursing Home: Nothing’s Wrong with Me. Rotterdam: Korsakov Knowledge Center. Halverson,K. (2005). Voluntary admission and treatment of incompentent persons with a mental illness. William Mitchell Law Review. 32(1): 161-187. Hem, M.H., Molewijk, A.C., & Pedersen, R. (2014). Ethical challenges in connection with the use of coercion: a focus group study of health care personnel in mental health care. BMC Medical Ethics. 15(1):82. Herring, J. (2007). Where are the carers in healthcare law and ethics? Legal Studies. 27(1): 51-73. Janssens, M.J.P.A., Rooij van, M.F.A.M., Have ten, H.A.M.J., Kortmann, F.A.M., & Wijmen van, F.C.B. (2004). Pressure and Coercion in the Care for the Addicted: Ethical Perspectives. Journal of Medical Ethics. 30(5): 453-458. Katsakou, C. & Priebe, S. (2006). Outcomes of involuntary hospital admission- a review. Acta Psychiatrica Scandinavica.114(4): 232-241. Kopelman, M.D., Thomson, A., Guerrini, I., & arshall, E.J. (2009). The Korsakoff Syndrome: Clinical Aspects, Psychology and Treatment. Alcohol & Alcoholism. 44(4): 148-154. Legemaate, J. (1994). De BOPZ en de vrijwillige opneming [The law for involuntary admission and voluntary admission; in Dutch]. Maandblad Geestelijke Volksgezondheid. 7: 668-678. Lipsky, M. (2010). The Client-Processing Mentality. In: Street-Level Bureaucracy. Dilemmas of the Individual in Public Services, M. Lipsky, ed., New York: Russell Sage Foundation, pp. 140-156.

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Healthcare professionals under pressure Martinsen, K. (2006). Care and Vulnerability. Oslo: Akribe. Martinsen, E.H. (2011). Care for Nurses Only? Medicine and the Perceiving Eye. Health Care Analysis. 19(1): 15-27. McCubbin, M. & Weisstub, D.N. (1998). Toward a pure best interests model of proxy decision-making for incompetent psychiatric patients. International Journal of Law and Psychiatry. 21(1): 1-30. Meyer, C. (2004). Cruel choices: autonomy and critical care decision-making. Bioethics. 18(2): 104-119. Monahan, J., Hoge, S.K., Lidz, C., Roth, L.H., Bennett, N., Gardner, W., & Mulvey, E. (1995). Coercion and Commitment: Understanding Involuntary Mental Hospital Admission. International Journal of Law and Psychiatry. 18(3): 249-263. Morrison, F. (2011). Neuropsychological Impairment and Relapse following Inpatient Detoxification in Severe Alcohol Dependence. International Journal of Mental Health Addiction. 9(2): 151-161. Parsons, O.A. (1998). Neurocognitive deficits in alcoholics and social drinkers: a continuum? Alcoholism, Clinical and Experimental Research. 22(4): 954-961. Patton, M.Q. (2002). Qualitative Research & Evaluation Methods, 3 ed. Thousand Oaks, London, New Delhi: Sage Publications. Pols, J. (2003). Enforcing patient rights or improving care? The interference of two modes of doing-good in mental health care. Sociology of Health and Illness. 25(4): 320-347. Provis, C. & Stack, S. (2004). Caring Work, Personal Obligation and Collective Responsibility. Nursing Ethics. 11(1): 5-14. Pulford, J., Adams, P., & Sheridan, J. (2009). Client/Clinician Discrepancies in Perceived Problem Improvement and the Potential Influence on Dropout Response. International Journal of Mental Health Addiction. 7(4): 497-505. Salize, H. J., Dressing, H., & Peitz, M. (2002). Compulsory Admission and Involuntary treatment of Mentally ill Patients-Legislation and Practive in EU-Member States, Central Institute of Mental Health, Mannheim, Germany. Sherwin, S. & Winsby, M. (2010). A relational perspective on autonomy for older adults residing in nursing homes. Health Expectations. 14(2):182-190. Strauss, A. 1985. Work and the division of labor. The Sociological Quarterly 26(1): 1-19. van Beemen, L., ten Wolde, M., & Goossensen, A. (2012). Standaard Diagnose Korsakov [Standard Diagnosis Korsakoff’s syndrome; in Dutch]. Rotterdam: Korsakov Kenniscentrum. van den Brink, W. & Jansen, P. L. (2009). Multidisciplinary Guideline ‘Disorders in the use of Alcohol’. Utrecht: Trimbos Institute. van den Hooff, S.L. & Goossensen, A. (2011). Zorgverleners in spagaat bij opname van patienten zonder ziekte-inzicht [The Dilemma’s of Caregivers in the Admission Process of Patients without Disease Understanding; in Dutch], with summary in English. Tijdschrift voor Gezondheidszorg en Ethiek. 21(4): 107-113. van den Hooff, S.L. & Buijsen, M. (2014a). Healthcare professionals’ dilemmas: judging patient’s decision-making competence in day-to-day care of patients suffering from Korsakoff’s syndrome. Medicine, Health Care and Philosophy. 17(4): 633-640. van den Hooff,S.L. & Goossensen, A. (2014b) How to increase quality of care during coercive admission? A review of literature. Scandinavian Journal of Caring Sciences. 28(3): 425-434.

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Risjord, M. (2014). Nursing and human freedom. Nursing Philosophy. 15(1): 35-45.

Healthcare professionals under pressure van den Hooff , S.L. & Goossensen, A. (2015a). Conflicting conceptions of autonomy: Experiences of family carers with involuntary admissions of their relatives. Ethics and Social Welfare. 9(1): 64-81. van den Hooff, S.L. & Goossensen, A. (2015b). Ethical considerations on the value of patient knowledge in long-term care. Nursing Ethics. 22(3): 377-388. Welie, S.P.K. (2008). Criteria for assessment of patient competence. A conceptual analysis from the legal, psychological and ethical perspectives.(dissertation), Maastricht: University of Maastricht. Wijnia, J. & Nieuwenhuis, G. (2010.) Wernick lastig te herkennen [Wernicke difficult to recognize; in Dutch]. Medisch Contact. 65(50): 2704-2705. Wynn, R., Myklebust, L.-H., & Bratlid, T. (2007). Psychologists and coercion: decisions regarding involuntary psychiatric admission and treatment in a group of Norwegian psychologists. Nordic Journal of Psychiatry. 61(6): 433-437.

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Chapter 8 Findings and General Discussion

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Findings and General Discussion

Introduction The focus of this chapter is on answering the research questions, formulating recommendations, and addressing methodological considerations. The central aim of our research was to gain insight into the complexity of involuntary admission processes into longterm care. To achieve this aim, this care practice was explored and described, and theoretical reflections were made. The main question guiding the research for this dissertation reads as follows: What tensions, concepts and challenges play a major role in the formulation of good care in involuntary admission processes for patients suffering from Korsakoff’s syndrome? In order to answer this main question, four sub-questions were formulated: 1. What are the themes reported in scientific literature with respect to good care during involuntary admission processes from the perspectives of healthcare professionals and patients? 2. What tensions and challenges can be deduced from family carers’, patients’ and healthcare professionals’ narratives on good care during involuntary admission? 3. What significant theoretical or conceptual reflections can be made related to the quality of care during involuntary admission processes? 4. What clues or entrances can be formulated with respect to improvement of care in involuntary admission processes for patients suffering from Korsakoff’s syndrome? This chapter is structured around these research questions. Firstly, the main findings of the sub-studies are summarized (answering sub-questions 1 and 2). Secondly, reflections on these findings are made and the suggested idea of ‘transcending responsibility’ is discussed (answering sub-question 3). Thirdly, recommendations are formulated regarding good care (answering sub-question 4). Lastly, research limitations are described.

Main findings By means of reviewing the literature (see chapter 3) we could answer research question 1 on themes that are important for good care. The reviewed articles could be distinguished into those describing themes from patients’ perspective and those describing themes from healthcare professionals’ perspective. Within each perspective, we further distinguished between articles with a focus on the respondents’ inside perspective and articles with a focus on the outside perspective. While the inside perspective shows the experiences of the respondents themselves, the outside perspective is a description of the behaviours and the situation from an external point of view. Both patients and healthcare professionals mentioned positive experiences (patients: being guarded, being seen; professionals: being satisfied, connectedness) and negative

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experiences (patients: being powerless, being humiliated; professionals: being stressed). The following themes in the context of good care were identified: pressure, loss of autonomy, procedural justice, respect, attitudes and admission criteria. These themes gave some clues to improve the quality of care during coercive admissions. Findings show that most patients’ experiences can be traced back to one core experience that makes all the difference: ‘Am I being listened to?’ If patients experience that they are genuinely listened to, they feel more respected as a human being and less emotionally abandoned. The challenge for healthcare professionals is to explicitly pay attention to and acknowledge patients’ struggles while considering whether or not to admit the patient. Quality of care during coercive admission improves when healthcare professionals are able to do justice to both inside and outside perspectives simultaneously. However, detailed descriptions on how healthcare professionals deal with both perspectives and what barriers might stand in the way are lacking. Research question 2 on tensions and challenges could be answered by means of the interview data. The participants perceived both ‘individual’ tensions and tensions due to their relation with the other actors in the process. For instance, the healthcare professionals reported individual tensions due to the legal possibilities and impossibilities to admit a patient. They had to apply law, but also had to achieve good care and prevent damage. They described difficulty finding a balance between issues of competence, autonomy, wellbeing and protection of the patient (chapters 2 and 6). The family carers in our study felt individual tensions when overruling the relative’s autonomy seemed the only option to ensure a coercive admission aimed at preventing further deterioration and dignity loss, and when healthcare professionals did not respond to requests to provide care for their relative (chapter 4). Finally, patients experienced individual tensions mainly when they felt that they were ‘not being listened to’. This caused feelings of powerlessness, humiliation, not being seen or disrespect (chapter 5). In the relations with the other actors in the network, tensions arose from different issues, such as: the way to accomplish an involuntary admission (legal mandate or not), the required reason for an involuntary admission (preservation of dignity or prevention of danger), recognition of the severity of the problem (early in the process or after some time) and the degree of interventions (home care or residential long-term care) (chapter 7). From our findings a couple of challenges for the formulation of good care came to the fore. The first that deserves mention here is the use of patients’ and family carers’ knowledge during involuntary admission processes. Family carers’ knowledge can shed a light on a patient’s situation and history, and possibly make clear that the patient’s decision to reject care is made non-autonomously (chapter 4). Patients’ knowledge shed lights on patients’ their emotional struggles (chapter 5). The fact that our patient group does not have insight into their illness makes the use of patients’ knowledge even harder. However, from literature it is known that if patients are given the opportunity to express their feelings and to participate in the process, they will reflect more positively on involuntary admission

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(O’Donoghue et al. 2010). The challenge for healthcare professionals is to improve the quality of care by acknowledging and explicitly paying attention to patients’ knowledge about their own situation. A second challenge can be found in the particularity of the situation patients suffering from Korsakoff’s syndrome find themselves in. This means that specific healthcare legislation, institutional regulations, general nursing home rules, and team appointments might be reinvented to create possibilities to be sensitive to patients and their knowledge about their situation (chapter 5). This challenge applies as well to day-to-day care situations where an assessment of competence is required (chapter 6). Attempts should be made to bring a balance between the correct interpretation of patients’ possibilities and competences and, on the other hand, institutional rules that impede the practical realization of these possibilities. For instance, a balance between safety regulations and the possibility of making coffee in your own room.

Reflection and discussion The answer to sub-question 3 on theoretical or conceptual reflections requires a further exploration and discussion on the principle of autonomy and the concept of responsibility. Autonomy As explained in chapter 1, this thesis narrows down the focus on the interpretation and the role of the principle of autonomy during the procedure of involuntary admission of patients suffering from Korsakoff’s syndrome in the Netherlands. The principle of respect for patient autonomy has come to be widely recognized in recent decades and is regarded as a fundamental ethical principle governing healthcare decisions (Beauchamp & Childress 2008). However, it still is a contested notion. Nowadays, patient autonomy in the healthcare context is most frequently discussed in terms of informed consent to treatment as well as to procedures to be followed and the legal criteria to be satisfied to ensure this consent (Schermer 2001, 40). In this conception of autonomy, competent patients’ autonomous preferences are the guideline for interference; patients themselves carry final responsibility for their own treatment. This conceptualization of autonomy has been criticized by various care ethicists for a number of reasons. Their critique has primarily been directed against the principle of autonomy understood as an ideal of independence and self-sufficiency. In the perspective of these critics, humans are not fully autonomous, but instead must always be understood in a condition of interdependence (Tronto 1993, 162). People are sometimes autonomous, sometimes dependent, and sometimes provide care for those who are dependent (ibid, 162). Care ethicists do not see autonomy as the cornerstone of our account of the ethical life (Groenhout 2004, 50). Further, critics argue that an interpretation of the autonomy principle should take account of the essential interconnectedness of people and the complexity of the ways in

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which people make healthcare decisions (Callahan 1984; Schneider 1998; O’Neill 2002). Many argue that a broad and more concrete understanding of autonomy is required (McCarthy et al. 2009, 172). For instance, Sherwin (2008) noted: “We are not isolated atoms, or islands, or self-contained entities, but rather products of historical, social, and cultural processes and interactions. The existence of any person is dependent on the existence and social arrangements of many others. Our interests are discovered by and pursued within social environments that help to shape our identities, characters, and opportunities. […] Relational autonomy […] requires us to examine the types of options on offer and ask questions about how these have arisen and also about options that are not available or accessible” (p.12). However, there is no single care view on autonomy. Schermer (2001) distinguished several care-inspired concepts of autonomy that show some degree of conformity. She argued: “The care view understands autonomy as both a condition and an ideal for personal development. It is something one can be to a greater or lesser degree and something one can and should strive to enhance and develop” (p. 159). And: “It is argued that autonomy is something we can only develop and attain through interaction with others who can help us develop and exercise the necessary skills and show us worthwhile values and goals. These relationships with others can also foster and enhance the self-trust and the self-respect that are both part of our autonomous selves and necessary conditions for further development” (p.170). Under Dutch involuntary admission law, treatment or informed consent is not the issue. The Dutch Compulsory Admission Act (BOPZ) sets limits for others to protect individuals from unjustified interferences; it articulates what others are not allowed to do and coercing people is unacceptable under normal circumstances (Ten Have 2001). Healthcare professionals might feel restricted in making admission decisions regarding patients suffering from a possible Korsakoff’s syndrome when no adequate legal solution seems available to admit these patients and patients are still seen as autonomous individuals (see chapter 2 of this thesis). Our data showed that the different actors use different conceptualizations of the principle of autonomy during involuntary admission processes (chapter 7). Legal professionals considered patients to be free, self-governing agents who carry final responsibility for their own health. They advocate patients’ autonomous preferences as guiding for admission in relation to the medical declaration and possible danger. Family carers’ conceptualizations fit a more care inspired relational view of autonomy. Healthcare professionals seemed to be in the middle, they might be using both conceptualizations. Sometimes they seem to use a relational view of autonomy, especially when they realize that care is needed but no legal options seem to be available to admit the patient. The relational approach is open to a consideration of many factors that are present in a particular situation. By using, for instance, a family carer’s relational knowledge and the patient’s history it will probably be easier to obtain a moral appraisal of the situation of a patient. Such profound appraisal of a patient’s situation might lead to the decision to arrange an, involuntary, admission.

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On the other hand, healthcare professionals also apply the traditional Western view of patients’ autonomy11 – in particular to prevent undue interferences. It is not unlikely that family carers will try to intervene in the relative’s self-destructive or harmful alcohol use. This might result in normative pressure placed on the relative to agree with an admission. Healthcare professionals try to recognize these situations and answer the question why family carers would force an admission. Is it because the relative is not able to live on his own anymore or because family carers cannot handle the situation anymore? If healthcare professionals apply the formal rules and recognize the patient as an independent, self-sufficient individual, they might prevent the patient from this kind of undue paternalistic interferences. This double perspective on autonomy can be seen in connection with the care philosophy developed by Kari Martinsen (2006). She highlights the importance of recognizing the need for care at the same time as practical action (Martinsen 2006). Martinsen distinguishes between “perceiving” and “recording”. The latter is understood as putting oneself in an outside position, classifying, systematizing and differentiating within the framework of an already existing conceptual system. “Perceiving”, on the other hand, refers to openness towards the world and other persons, in which sensation and emotions are working together. It allows for ‘a seeing emotion’ by which professionals are touched and emotionally involved and understand the needs of the other (Martinsen 2006). Linking this philosophy to healthcare professionals’ vision of autonomy during involuntary admission processes of patients suffering from Korsakoff’s syndrome could imply they use a recording eye when they stick to the formal legal rules to admit patients and selfdetermination of patients has priority. They might use a perceiving eye in a care inspired relational view of autonomy. Taking into account a patient’s and family carer’s knowledge permits a better understanding of this patient’s needs and his or her actual situation. Then, an admission aiming to protect dignity12 might be easier to achieve. Both perspectives seem necessary when assuming responsibility for improving care during involuntary admission. Responsibility This brings us to a further exploration of the concept of responsibility and the particular responsibilities of the different actors. It is clear that all have valuable but different responsibilities towards patients (chapter 7). All actors look at dilemmas in different ways. 11 12

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In which the patient is seen as an independent and rationally self-sufficient individual. Dignity is used here in the meaning of non-inherent dignity. There is debate within literature as to whether dignity is a value which underlies, and is therefore logically prior to, rights, or whether dignity is a desired end that concrete rights must protect (Michael 2014, 12). Michael clarifies this debate by showing that the concept can be both fundamental to human rights and the desired end of rights (p. 13). So there is a need to specify which category is being used: ‘full inherent human dignity’ or ‘non-inherent human dignity’. Full inherent human dignity is a permanent and unconditional quality, all human beings have full inherent dignity simply for being human, and it is not dependent of any external factors such as race, gender, sexuality, economic or social status, or health (pp.16-17). Non-inherent human dignity is an acquired condition; it is contingent upon a person’s circumstances and behaviour (p. 21). Non-inherent dignity is often signified by its adjective ‘dignified’, which usually refers to a ‘kind of gravity or decorum or composure or self-respect of self-confidence together with various good qualities’ (Gerwith 1992, 12).

The greater the discrepancy between perspectives, the more obvious the occurrence of tensions. Especially when different ‘types’ of responsibility come together at the same time. As an example, the family carers’ and healthcare professionals’ responsibilities both argue for a coerced intervention in the patient’s life even before a medical declaration has been made. However, such a declaration is required under Dutch admission law for the request of a legal mandate for an official involuntary admission. Family carers and healthcare professionals see it as their responsibility to act in the patient’s best interest and to ensure that the patient receives the best possible care. On the other hand, legal professionals’ responsibility aims at protecting their clients against these coerced interventions. Their responsibility is to ensure that their clients’ rights are respected. Healthcare professionals’ responsibilities were further explored to provide clues for improvement of care during the involuntary admission processes. The main finding in all substudies highlight the big responsibility healthcare professionals have to bear to provide good care: they must take the responsibility to impose an admission (chapter 2); they have to pay attention and really listen empathically to patients’ struggles while at the same time make the decision to admit the patient involuntarily (chapter 3); they must be attentive and show openness to family carers’ knowledge about the situation (chapter 4); they must respond more accurately to patients’ worries and needs, even if these stem from a lack of insight into the illness (chapter 5 and 6); and we even suggest that they might set themselves up as the central coordinator during the involuntary admission process, to take a helicopter view allowing them to fine-tune the different paradigms, and to value the responsibilities of the different actors at the right moments (chapter 7). In general, healthcare professionals are supposed to act in their patients’ best medical interest and to ensure that patients receive the best medical treatment (Wyder et al. 2015). They are expected to make decisions about patients on the basis of individual cases, yet this is impossible in some situations (Lipsky 2010) because they are tied to specific healthcare legislation, general nursing home rules, team appointments and culture, routines and habits in the nursing home. They also have to comply with the professional standard, as stated in article 7: 453 of the Dutch Civil Code: “The healthcare provider must give the level of care that might be expected of a conscientious practitioner and must act in accordance with the responsibility to which he is subject and which results from the professional Standard. The Professional Standard involves acting in accordance with the views of medical science and complying with generally accepted Standards.” An often adopted criterion for assessment of healthcare professionals’ conduct is: that care should be provided by a “reasonably competent healthcare professional acting in a reasonable manner”. The sources to consult for a professional standard include regulations, case law, codes of conduct, protocols and guidelines (Stolker and Slabbers 2001, p. 152).

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In this sense, healthcare professionals’ responsibility is considered a primarily legal (not acting contrary to the law) or ‘protocol’ matter (just follow the protocol) (van Heijst 2008, 263). Van Heijst (2011) argues that this is an unfortunate narrowing of the healthcare profession. Healthcare professionals will do nothing that is against the regulations of the workplace or the law (p. 154). A protocol system seems to substantially affect the deliberating character of responsibility. Healthcare professionals will avoid taking responsibility for offering treatment that might be risky but could nevertheless benefit the patient (ibid, 154). Ultimately, responsibility requires some freedom and conscientious self-assessment of the situation (van Heijst 2008, 263). However, the Royal Dutch Medical Association (KNMG13) falls back on protocols to describe healthcare professionals’ freedom. “The freedom of a physician to make his own decisions is important, because it serves the patient’s individual health needs, but is not unqualified. This freedom is, rather, determined by professional standards applicable to him which encompass rules of conduct, standards, guidelines and protocols. (...) The application of standards, guidelines and protocols is not free of obligation. (...) If a doctor deviates from the standard, he must be able to justify such a course of action on the basis of care-related expertise and lines of reasoning. In this sense, medical professional autonomy is also a form of ‘freedom within given constraints’ and forms part of professional responsibility” (KNMG 2007, 11). In admission processes of patients suffering from Korsakoff’s syndrome it seems that these constraints are too dominant. Healthcare professionals do not feel enough freedom to follow their own responsibility: do what is good according to their clinical expertise in this situation. Their power to act seems limited as a result of bureaucracy, rules and a counteracting network. As a result, it may occur that patients suffering from Korsakoff’s syndrome do not receive care in time. At the same time, healthcare professionals bear a responsibility together with the other actors in this network. The KNMG (2007) noted: “This [shared responsibility] requires ensuring that the shared and distributed responsibilities are linked effectively. Clear and balanced agreements must be made, established in concrete terms and complied with in respect of duties, responsibilities and

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The Royal Dutch Medical Association (KNMG) is the professional organization for physicians of the Netherlands. It was established in 1849. Since January 1st 1999 the KNMG has become a federation of medical practitioners’ professional associations. Their main objectives are to improve the quality of medical care and healthcare in general, and to improve public health. This is achieved by proactively responding to developments in healthcare and society, by developing guidelines and policies, by lobbying, and by providing services to our members. Another important task of the KNMG is the regulation of vocational training and registration of specialists. http://knmg.artsennet.nl/Over-KNMG/About-KNMG.htm


Our research suggests that the responsibilities of the different actors are clear, yet maybe are not linked effectively. From a care ethical perspective the network of different actors who are interdependent is extremely important during the process of involuntary admission. As mentioned above, all actors have their own considerations and interpretations of the patient’s care needs (Van Heijst 2008, 307). Responsibility seems to entail the balancing of considerations of care for a particular individual in a specific situation and context. Tronto (1993) suggests that we are better served by focusing on a flexible notion of responsibility than we are by continuing to use obligation as the basis for understanding what people should do for each other (pp. 131-133). With respect to the involuntary admission of patients suffering from Korsakoff’s syndrome, this could mean that the actors in the network may not only need to conform to their own formal obligations, such as legal rules or formal agreements made. On the contrary, they must debate with each other about a shared conception of responsibility in this particular situation and try to achieve the best possible solution for this patient. The ethicist Margaret Urban Walker (2007) especially highlights the importance of context. It is not principles, intentions or ideals that form a starting point for actually taking responsibility, but how people behave, where they stand, and what position they take (in: Van Heijst 2011, 168). Walker pictured responsibility as rooted in webs of relationships and noticed that clashes occur and responsibilities can conflict (ibid, 169). From Walkers theory follows that there is a link between the responsibility that people take and their position in the network (in: Van Heijst 2008, 309). In general, people who are closer to a person (relational or situational) are the first ones to be held responsible and to feel responsible (in: Van Heijst 2011,169). Our data showed that family carers are the first to feel responsible for the patient, which corresponds with the theory of Walker; they are closest to the patient. Legal professionals stand much further away and healthcare professionals find themselves in the middle. The urge to act might be dependent on their position in this network. Awareness of these positions is needed to understand the different responsibilities during the involuntary admission process. Still the problem exists: How to deal with these different responsibilities and tensions between the actors during involuntary admission processes? The actors in the network seem to perceive strict boundaries between the different responsibilities. Elihu Gerson has noted (1983): “The precise manner in which people are assigned to tasks (and vice versa) is itself a task (…) thus a given allocation is never fixed and certain, but is always subject to revision. The revision process takes the form of more-or-less continuous negotiations between people over the allocation of tasks (...)” (in: Strauss 1985, 6). Regarding the research for this dissertation,

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management (Joeloemsingh 2007). In doing so, doctors manifest medical leadership. In the interests of the patient there must be clarity about who is responsible for what and when. It is precisely a lack of organization that can have far-reaching consequences for the quality and continuity of care” (p. 8).


this notion raised the question if it may be necessary to re-allocate responsibilities if tensions arise between actors during involuntary admission processes. ‘Transcending Responsibility’ My suggestion is that it might not be necessary to re-allocate responsibilities, but to transcend responsibilities instead. In other words, the legal and medical responsibilities of the professionals in the network around patients suffering from Korsakoff’s syndrome do not have to change. Actors have their own formal responsibility; no change in content. However, care might improve care if the professionals not only reason from their own perspective but try to transcend their own professional responsibility to connect with the other actors’ perspectives on responsibility. In this sense ‘transcending responsibility’ asks for a reexamination of assumptions and values, critical thinking and new creativity. This kind of re-examination can be linked to the transformative learning theory of Sterling (2010). This theory refers to “a qualitative shift in perception and meaning making on the part of the learner in a particular learning experience such that the learner questions or reframes his/her assumptions or habits of thought”, and this might “take us to the depth of things” (Sterling 2010, 18-19). Mezirow (2000), referring to the process of transformative learning, noted: ‘(..) by which we transform our taken-for-granted frames of reference, meaning perspectives, habits of mind, mind-sets, to make them more inclusive’ (p.7). So, transformative learning involves a “perceptual change and coming to a transpersonal ethical and participative sensibility. In brief, an expansion of consciousness and a more relational way of seeing arises, inspiring different sets of values and practices” (Sterling 2010, 23). Some elements of this transformative learning theory seem to fit to my idea of ‘transcending responsibility’ in situations where conflicts arise between the different professional responsibilities during involuntary admission processes. I like to propose that professionals in these situations dare to make a significant change in thinking about their responsibility by examining their own assumptions, values and perspective. The challenge will be to accept a more flexible notion of their responsibility (Tronto 1993). Responsibility is not a fixed notion; instead professionals need to reflect critically on their own responsibility. Being more open to other views and possibilities, gaining insight into the worldview of the other actors, and understanding their way of handling the situation may possibly result in better care. It will be necessary to work together, not blaming the others for having another worldview and bearing a shared responsibility for the problem. To explain my idea I will once again quote the legal professional cited in chapter 1. He said: “If someone does not want an admission, it is my task to be there for my client. If I see a change to overrule the admission, I will do that, even if it endangers my client’s life. I am the one to make my client’s voice heard” (interview December 2nd 2010). In this situation a conflict has arisen between the legal professional and the healthcare professional. In short, the healthcare professional argued for an involuntary admission, the legal professional argued against the admission. Their arguments were congruent with

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their own professional responsibility. So it was not a matter of one of the professionals putting forward the wrong arguments; the arguments were in line with their professional responsibility. However, they held on to their own views and were unable to look beyond their own perspective, which resulted for instance in negative judgments about one another. There was no dialogue, and in cases like these the patient might be on the losing side: care is not given at all or at a later date. An attempt to ‘transcend responsibility’ might be part of the solution to improve care and enhance patients’ non-inherent dignity. Professionals of one discipline are invited to relate to professionals from the other discipline, to be open to test their own professional conceptualization of responsibility, assumptions and conclusions. The challenge will be to be reflexive, open to criticism, willing to test claims and to accept that together they are responsible for the patient. This requires flexibility and less rigidity of thought. ‘Transcending responsibility’ will not be easy. Actors in the process have to show willingness to acknowledge the others’ understanding of responsibility, reach out to the other and show openness to access another world of professional thinking and modeling.

Recommendations In this section, sub-question 4 on clues or entrances for improvement of care is answered by formulating several recommendations.

‘Transcending responsibility’ requires deliberation between the different actors in the relational network of patients during involuntary admission processes. At present it is uncommon in the Netherlands to discuss the background of the actual situation of patients in organized meetings between healthcare professionals, legal professionals and family carers before their meeting in Court. In general, these actors meet for the first time in Court. I suggest that care provision could improve if these consultations are planned early in the decision making process at the time a thorough diagnostic assessment is deemed necessary (see chapter 7). Currently, the Dutch government is working on new healthcare legislation. The legal criteria and requirements for an involuntary admission will be adjusted. The intended successors of the BOPZ are the ‘Compulsory mental healthcare act’ (WvGGZ14) and the ‘Care and coercion of psycho-geriatric and mentally disabled clients act’15. The first is currently being addressed in the House of Representatives16. The second has been accepted by the House of Representatives (19th of September 2013). However, the Senate (Eerste Kamer) of

14 15 16

In Dutch: Wet verplichte Geestelijke Gezondheidszorg; Parliamentary document 2009/10, 32.399, nr.3. In Dutch: Wet zorg en dwang psychogeriatrische en verstandelijk gehandicapte cliënten; Parliamentary document 2008/09, 31.996, nr.3. http://www.eerstekamer.nl/wetsvoorstel/32399_wet_verplichte_geestelijke

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the Dutch Parliament (the States General) has decided to prolong the decision about this bill, so as to be able to address both at the same time. The original proposal of the WvGGZ included the introduction of a multidisciplinary committee with the task of advising the judge about the necessity of an involuntary admission. This committee should be composed of psychiatrists, medical directors, prosecutors and legal professionals from Court17. It was proposed that this committee should take over the task of the prosecutor as petitioner of an involuntary admission. Recent developments indicate the removal of this committee from the proposal. The most important counter arguments concern the expectation of useless duplication of efforts, delay of the procedure, and unclear division of responsibilities. However, some opponents of the governmental proposal, among others the Royal Dutch Medical Association (KNMG), the Dutch Association of Elderly Care Physicians and Social Geriatricians (Verenso), and the Dutch Association of Psychiatry (NVvP) are in favor of keeping the committee, but in a simpler set-up. They emphasize that the committee should have a decisive role and that patients have the right to appeal against decisions. They argue that in this way the duplication of work will be avoided and the possibility of an appeal to Court is maintained18. This thesis supports this idea. However, I recommend that this committee includes representatives of patients and family carers as well. In chapter 7 of this thesis a renewed route/timetable for involuntary admission processes is proposed, supporting an important role for family carers. It is argued that family carers should be facilitated to stay involved. I also recommend involvement of all actors earlier in the process. The proposed advisory committee will most probably come together when a temporary or permanent admission is requested. However, when family carers recognize a need for care and take responsibility to meet that need and healthcare professionals recognize the urge for a diagnosis, it is time to discuss the situation of the patient with all actors together (see chapter 7, figure 2). Different responsibilities to reach good care will come together and the best possible care can be argued for. If the different actors are willing to transcend their own conceptualizations of responsibility early in the process, this might lead to a reduction of tensions, earlier interventions, timely and adequate diagnosis, and a smoother involuntary admission process. Recommendations for good care during involuntary admission The data presented in chapter 5 suggest that healthcare professionals do not always take a patient’s personal subjective knowledge seriously because objectively it might be wrong. However, a patient’s knowledge can offer clues to better understanding of a patient’s feelings of refusal and neglect, and to respond more accurately to their worries and needs when admitted in the nursing home. In practice this means that a patient’s hopes or wishes will

17 18

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Parliamentary document 2009/10, 32.399, nr. 3, p.7. Letter of KNMG, NVvP en GGZ NL d.d. February 6th 2009 to the Permanent Parliamentary Committee for Health, Welfare and Sport.


have to be discussed over and over again because the patient suffering from Korsakoff’s syndrome might have forgotten the earlier conversation. Further exploration of patients’ experiences is needed to establish whether this is an appropriate method to meet and care for patients. The assumption is that this kind of sensitivity and relational tuning to patients will diminish feelings of neglect and humiliation. Recommendations for policymakers

Recommendations for further research This PhD-study was a first step on the road to explore experiences during involuntary admission processes of patients suffering from Korsakoff’s syndrome and the other actors involved. Because this is a highly complex issue, it would be commendable to do more in depth empirical research with larger numbers of participants. As mentioned above, it might be preferable to use patient knowledge to discover the right way to treat them individually. A proper method to use this knowledge could be developed and examined. Secondly, the idea of transcending responsibility is worth further exploration. Is it really possible and what pitfalls can be found in practice? An in-depth study on this topic is needed to unearth the different notions of responsibility and the conflicting notions on what is good care in the context of involuntary admission processes.

19

Parliamentary document 2009/10, 32.399, nr. 3, p.17

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A recommendation for governmental policy can be formulated as well. This study suggests that it is desirable to achieve better alignment of legislation for the group of patients without insight into their own illness, expanding the possibilities of providing care to this group. Perhaps the forthcoming Dutch laws will provide for this. The danger criterion will be replaced by the criterion of significant risk of serious harm, which suits better to the internationally used criteria. This criterion might give more opportunities to admit patients suffering from Korsakoff’s syndrome. Patients who are addicted to alcohol or drugs will fall within the scope of the proposed bill (WvGGZ). However, they can only receive compulsory care if they meet the criteria of the bill. Which means that as long as there is no serious damage to themselves or to others arising from a mental disorder, they do not fall under the scope of the bill19. We recommend the Korsakoff Knowledge Center to keep an eye on these legal developments, as they used to do. Secondly, this study demonstrated the necessity of bringing the correct interpretation of patients’ possibilities and competences in balance with existing nursing home rules. It is recommended that regulations that might impede the practical realization of patients’ possibilities are evaluated and discussed on their effect, main aim and necessity. Opportunities might be created to be sensitive to patients’ particular circumstances and vulnerabilities and their knowledge about their own situation. In some cases, it might be necessary to deviate from the rules and treat patients unequally if there is a good reason (chapter 6).


Limitations In this section, some pitfalls and limitations of this PhD study are addressed. Firstly, the internal validity of this study could have been compromised. Due to the qualitative semi-structured interview approach used, participants were able to describe their experiences extensively, which created lengthy interview transcripts with a lot of information. Separating relevant from less relevant information and focusing too much on details might have been a pitfall. However, during the data analysis process the interview data were continually discussed to diminish this possibility. Secondly, only one researcher collected the interview data. The interviewing technique may have changed during the course of the study due to better interview skills and greater experience. Although the interviews were carefully and critically evaluated, interpretation of the interview data still depends on individual skills, education and interpretation of the researcher. The researcher had a psychological/legal background. It cannot be excluded that researchers with other backgrounds would have interpreted the data differently. Thirdly, the limited sample size may have negatively impacted the study’s quality. The method of purposive sampling was used to focus on patients suffering from Korsakoff’s syndrome who still had a concerned family carer who took care of the patient prior to admission and had still remained in touch. We are aware that the sample is not representative of the whole population of patients suffering from Korsakoff’s syndrome. Overwhelmed by the sheer amount of problems of patients suffering from Korsakoff’s syndrome, many family carers simply let go and severed contact with the relative. However, the family carers in our study had found it necessary to stay in touch. They even decided to interfere in the relative’s private life, which meant a violation of his autonomous choice to live his life this way. Our family carers realized that help was needed in order to prevent serious damage to the life of their relative (see chapter 3). It is likely that this produced an atypical sample of family carers, namely those who were still concerned about their relative. Thus, the findings of this study can be used only to shed light on the experiences of this specific participant group. This limitation of small sample size also pertains to the patient group. They also were purposefully selected with the use of the strategy of typical case sampling. The patients were selected by healthcare professionals on the basis of two predetermined criteria: firstly, availability of an informal carer, kin or non-kin, who was willing to participate in the study; secondly, the patient should be physically and mentally able to conduct a conversation with the researcher. It cannot be excluded that healthcare professionals selected only patients with positive experiences. However, both positive and negative experiences came to the fore. Selection of other patients and carers might have yielded different outcomes. However, the method of case sampling was deliberately chosen to be able to study the experiences of patients’ and their carers simultaneously, which was a particular interest of the researcher. I am aware, nevertheless, that this diminished the possibility to generalize the data to other groups.

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References Beauchamp, T.L. & Childress, J.F. (2013). Principles of biomedical ethics. Seventh edition. New York/ Oxford: Oxford University Press. Callahan, D. (1984). Autonomy: a moral good, not a moral obsession. The Hastings Center Report. 14(5): 40-42. Gerwith, A. (1992). Human Dignity as the Basis of Rights. In: M.J. Meyer and W.A. Parent, eds. The Constituion of Rights: Human Dignity and American Value. Ithaca. London: Cornell University Press. Groenhout, R.E. (2004). Connected Lives: Human Nature and an Ethics of Care. Lanham: Rowman and Littlefield Publishers INC. Joeloemsingh, D. (2007). Heldere afspraken. Verantwoordelijkheidstoedeling voorwaarde voor verantwoorde zorg [Clear agreements. Allocation of Responsibility prerequisite for responsible care]. Medisch Contact. 5: 204-209. KNMG (2007). Medical professionalism. Utrecht: KNMG. Lipsky, M. (2010). “The client-processing Mentality”. In: Street-Level Bureaucracy. Dilemmas of the Individual in Public Services. M. Lipsky, ed., New York: Russell Sage Foundation, pp. 140-156. Martinsen, K. (2006). Care and Vulnerability. Oslo: Akribe. McCarthy, J., Donnelly, M., Dooley, D., Campbell, L., & Smith, D. (2009). “Patient Autonomy in Law and Practice”. In: An Ethical Framework for end-of-life care. J. McCarthy & M. Taylor, eds., Ireland: University College Cork, pp. 161-211. Mezirow, J. (2000). Learning as Transformation: critical perspectives on a theory in progress. San Francisco: Jossey Bass. Michael, L. (2014). Defining Dignity and Its Place in Human Rights. The new Bioethics. 20(1):12-34. O’Donoghue, B., Lyne, J., Hill, M., Larkin, C., Feeney, L., & O’Callaghan, E. (2010). Involuntary admission from the patients’ perspective. Social Psychiatry and Psychiatric Epidemiology. 45(6): 631-638. Schermer, M.H.N. (2001). The different faces of autonomy. A study on patient autonomy in ethical theory and hospital practice (dissertation). Amsterdam: VU University. Schneider, C.E. (1998). The practice of autonomy. Oxford/ New York: Oxford University Press. Sherwin,S. (1998). A relational approach to autonomy in healthcare. In: The politics of women’s health: exploring agency and autonomy, S. Sherwin & The Feminist Health Care Ethics Research Network, eds., Philadelphia: Temple University Press, pp. 19-47. Sterling, S. (2010). Transformative learning and sustainability: sketching the conceptual ground. Learning and Teaching in Higher Education. 11(5): 17-33. Stolker, C. J. J. M. & Slabbers, S. (2001). “The Netherlands”. In: Cases on Medical Malpractice in a Comparative Perspective, M. Faure & H. Koziol, eds., Springer, pp. 146-176. Strauss, A. (1985). Work and the division of labor. The Sociological Quarterly. 26(1): 1-19. Ten Have, H.A.M.J. (2001). Bioethics in a European perspective. Dordrecht: Kluwer Academic Publishers. Tronto, J.C. (1993). Moral Boudaries: A Political Argument for an Ethic of Care. New York/London: Routledge.

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O’Neill, O. (2002). Autonomy and trust in bioethics. Cambridge: Cambridge University Press.

Findings and General Discussion Van Heijst, A. (2008). Menslievende zorg. Een ethische kijk op professionaliteit. Kampen: Klement. Van Heijst, A. (2011). Professional Loving Care. An ethical view of the healthcare sector. Herent: N.V. Peeters S.A. Walker, M.U. (2007). Moral Understandings. A feminist Study in Ethics. New York: Oxford University Press. Wyder, M., Bland, R., Herriot, A., & Crompton, D. (2015). The experiences of the legal processes of involuntary treatment orders: Tensions between the legal and medical frameworks. International Journal of Law and Psychiatry, 38 (january-february), 44-50.

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Summary

Patients suffering from Korsakoff’s syndrome form a special group surrounded with specific healthcare and ethical problems. Problems may especially arise when an involuntary admission seems at issue. In general, the number of involuntary admissions of these patients is still on the rising and this procedure is widely discussed from an ethical point of view (van der Post et al. 2009; van de Wetering 2008). A common ethical dilemma is the tension between individual freedom and the need to protect the patient. In the Netherlands, the Dutch Compulsory Admission Act (BOPZ) is the frame of reference in case of an involuntary admission. According to this act, there are three criteria governing compulsory admission: patients do not agree with admission, they present a danger to themselves and others, and the ‘last resort’ principle applies; in other words, there is no reasonable alternative. If these criteria are met, the Court can issue a legal mandate. The law is clear: it is unlawful to impose a medical treatment or an involuntary admission on competent persons without their consent. The process towards a request for a legal mandate at Court, which rules on the permissibility of involuntary admission, seems problematic when people suffering from (the onset) of Korsakoff’s syndrome are involved. They have not committed any offence, apart perhaps from being repeatedly intoxicated in public, nor are they diagnosed with a mental disorder, but still they are compelled to enter an institution for their own good. In this admission process, different actors play a role. Healthcare professionals, legal professionals, family carers and patients all have their own perspective on the situation. The goal of this thesis was to shed a light on these perspectives in a way that is relevant to theory and practice by investigating the experiences of these actors. In chapter 1 the focus of this thesis is described: to develop scientific knowledge on the dynamic process of involuntary admission into long-term care and to foster improvements. The care practice with regard to patients suffering from Korsakoff’s syndrome is explored and described, and theoretical reflections are made to clarify tensions. The main question guiding

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the research for this dissertation reads as follows: What tensions, concepts and challenges play a major role in the formulation of good care in involuntary admission processes for patients suffering from Korsakoff’s syndrome. To answer this main research question, four sub-questions were formulated. Dutch mental healthcare law is described, which provides a rationale for the concept of involuntary admission and gives procedural context to the focus of this study, as do the theoretical entrances from medical and ethical discourses. Involuntary admission processes seem to cause different dilemmas and tensions for the different actors, which might cause unnecessary delay of care delivery. Patients suffering from Korsakoff’s syndrome lack awareness of their illness and tend to reject care. Consequently, it is likely that their mental and physical health will further deteriorate, which in turn may cause dignity loss. In this chapter the research approach, methodology and used quality procedures are described extensively. The study as a whole is of a qualitative nature. A grounded theory influenced approach was used to collect and analyze the empirical data of patients, family carers, healthcare and legal professionals. A semi-structured interview approach was used to explore these actors’ experiences. The methodology and procedures used for each sub-study are described in articles published in various peer-reviewed journals, now re-published as chapters in this thesis. Chapter 2 presents a case that illustrates the healthcare professionals’ precarious balancing act in the admission process into long-term care of patients suffering from Korsakoff’s syndrome. The most important dilemma of healthcare professionals seems to consist of wanting to respect the autonomy of patients on the one hand, and on the other hand to achieve good care and prevent damage. Especially the legal possibilities and impossibilities to admit patients seem to put great responsibility on healthcare professionals. They still opt for some kind of forced admission, which requires high precision and sensitivity. Patients are depending on these moral judgments of healthcare professionals and the risk these professionals dare to take to admit patients even without a formal legal status. This may cause unwanted variation in decisions surrounding admissions. Healthcare professionals who dare take this risk – and thereby may act contrary to the law – help the patient, albeit with infringing the patient’s autonomy. Chapter 3 presents a review of scientific literature on involuntary admission which aimed to explore themes from patients’ and healthcare professionals’ perspectives. The articles could be distinguished into those describing themes from the patients’ perspective and those describing themes from a healthcare professionals’ perspective. Within each perspective, we further distinguished between articles with a focus on the inside perspective of the respondents and articles with a focus on the outside perspective. The inside perspective shows the experiences of the respondents themselves; the outside perspective is a description from an external point of view of the behaviours and the situation.

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Findings showed that most patients’ experiences could be traced back to one core experience: either being listened to or not listened to. When patients experienced they are genuinely being listened to, they felt more respected as a human being. To avoid harm during involuntary admission processes it might be necessary to see the patient in two different ways, as described by Martinsen (2011). Seeing the patient subjectively as a person with feelings and concerns, and seeing the patient objectively as a person with a diagnosis that calls for involuntary admission. The challenge for healthcare professionals is to explicitly pay attention to patients’ struggles and really listen empathically to them while considering whether or not to admit the patient. Quality of care during coercive admission may improve when healthcare professionals are able to do justice to both inside and outside perspectives simultaneously. Many theoretical concepts underline these conclusions. However, detailed descriptions on how healthcare professionals deal with both perspectives and what barriers might stand in the way are lacking. The challenge for future studies is to explain boundaries and tensions involved during caring in involuntary admission situations from theoretical perspectives, for example in the field of care ethics. Chapter 4 shines light on some important aspects in the care-seeking process towards a coercive admission from family carers’ perspective. Family carers struggle to find appropriate care. Findings revealed that family carers had to impose care to maintain or achieve a dignified way of life for their relative. Family carers had to convince themselves of the need to actually violate the relative’s autonomy and to persuade the healthcare professionals to organize appropriate care. These aspects of the imposition of care illustrated that tensions may arise when overruling the relative’s autonomy seems to be the only option to ensure a coercive admission aimed at preventing further deterioration and dignity loss. Family carers perceived a lack of attentiveness from the side of healthcare professionals; their relatives were not recognized as patients needing care. As a result family carers had to fight the healthcare system. One possible reason for the need to fight the healthcare system is the existence of different conceptualizations of autonomy by the applicable Dutch laws in healthcare, healthcare professionals and family carers. The legal system, which healthcare professional have to comply with, is based on the libertarian Western concept of autonomy which sets limits for others to protect individuals from interference. Family carers seem to use a more care inspired relational view of autonomy in which the goal is to preserve the relative’s dignity and which requires a moral appraisal of the situation. Chapter 5 illuminates the perspectives of six patients suffering from Korsakoff’s syndrome on their stay in a nursing home after involuntary admission. The information given by these patients might be mistaken, invented and even not true. This way to communicate is part of the syndrome. However, this study revealed that our respondents could give a window into their inner perspective that is valuable. Data analysis gave insight into the way patients see, interpret and respond to the care they receive. Four themes emerged from our data that address type and content of patients’ knowledge about their own health condition,

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the involuntary admission, daily routines and about the caring abilities of healthcare professionals. This study deepened our understanding of the value of patient knowledge. Healthcare professionals are encouraged to discover and affirm the understandings of these patients, and not to be prejudiced due to the diagnosis or general nursing home rules, which might increase the suffering of patients. Appreciation of the complexity and richness of different views on the situation and identifying values in their stories can lead to more human responses to individual needs and pain. Chapter 6 reports on a group discussion between healthcare professionals in which they expressed their concerns with respect to patient decision making competence in dayto-day situations. Their experiences revealed difficulties in finding a balance between the autonomy of their patients suffering from Korsakoff’s syndrome and competence issues. The fact that patients are reluctant to receive care does not mean that they are incompetent. The role of decision making competence in Dutch legislation was analyzed and professionals’ dilemmas were elucidated. Findings revealed firstly, that some minor issues in day-to-day situations might derive from an incorrect interpretation of legal requirements, and secondly that assessment of competence still is difficult. There are no rules that relieve healthcare professionals from their obligation to personally assess preferences and decisions of possibly incompetent patients. However, healthcare professionals might try to look at dilemmas in different ways, from new perspectives they have not thought of before. Being more sensitive to individual habits, abilities, welfare and dignity, might make it easier to decide on issues of competence and to find creative solutions to their dilemmas. Chapter 7 reflects on different perspectives on ‘doing good’ of patients, family carers, healthcare and legal professionals in involuntary admission processes of patients suffering from Korsakoff’s syndrome. It is acknowledged that all actors in the process have valuable responsibilities towards the patient. Together they showed us complementary visions and intentions for doing good with respect to the whole patient, his or her situation, possibilities and impossibilities. However, as a result of theoretical differences and tensions among the actors, patients may be on the losing side due to the possibility of undue interferences, negligence or harm. Removal of tensions between the different actors is required on issues such as autonomy and responsibilities. A procedural solution is presented in the shape of a renewed time/action table for an involuntary admission process in which the different actors become owners of a particular stage, with the healthcare professional as the central coordinator. This table is presented as a way to weigh and balance the different perspectives and responsibilities during the process and to open the discussion and negotiation between the different actors. It is not meant to be used rigorously. The renewed route aims to pay attention to all patients’ needs at the right time. Earlier interventions, timely and adequate diagnosis, and reduction of tensions between the different actors by fine-tuning their paradigmatic frameworks might contribute to better practices.

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Summary

Finally, in chapter 8 the main findings of the sub-studies are summarized and recommendations and limitation of the studies are described. It also elaborates further on the principle of autonomy and the concept of responsibility. In short, the different actors in involuntary admission processes used different conceptualizations of the principle of autonomy. Healthcare professionals seemed to be in the middle, using both the Western liberal view and the more care inspired relational view of autonomy. It seemed that both perspectives are necessary to take responsibility and to improve care during involuntary admission. Healthcare professionals’ big responsibility is sometimes difficult to fulfill due to specific healthcare legislation, institutional regulations, general nursing home rules, team appointments, culture, routines and habits in the nursing home, the professional standard applicable, and a counteracting network due to different responsibilities. The idea of ‘transcending responsibility’ is proposed as a means to minimize the negative aspects of this counteracting network. This means that the actors in the process must be critically reflective to their own responsibility and acknowledge the responsibilities of the other actors in the process. Transcending responsibility might also require a significant change in thinking or in what professionals are doing as a result of examining assumptions and values with the sole aim to do what is good for this unique person.

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Samenvatting (Dutch)

Centraal in deze thesis staat de zorg rondom een onvrijwillige opname in een instelling voor langdurige zorg van patiënten die lijden aan het syndroom van Korsakov20. Een van de kenmerken van dit syndroom is het gebrek aan ziekte-inzicht. Als gevolg hiervan weigeren de meeste patiënten dagelijkse zorg. In zijn algemeenheid kan gesteld worden dat zonder ingrijpen van buitenaf de geestelijke en lichamelijke gezondheid van de patiënt verslechtert met mogelijk de dood van de patiënt als uiteindelijk gevolg. In de Wet bijzondere opnemingen in psychiatrische ziekenhuizen (Wet Bopz) zijn de criteria beschreven waaraan voldaan moet worden om een patiënt onvrijwillig te kunnen opnemen. Deze wet gaat uit van het bereidheidscriterium: opneming zonder ‘de nodige bereidheid’ van de patiënt vereist een machtiging van de rechter of een inbewaringstelling van de burgemeester. De wet Bopz voorziet in een gedwongen opneming ter afwending van gevaar dat voortkomt uit een stoornis van de geestvermogens. Een van de problemen bij het syndroom van Korsakov is dat over het algemeen de diagnose pas gesteld kan worden na een opnameperiode van 4 tot 6 weken met alcoholabstinentie (Goossensen et al., 2007). Daarvóór is het over het algemeen nog niet medisch aantoonbaar dat er sprake is van een stoornis van de geestvermogens. Tevens moet er sprake zijn van een causaal verband tussen de geestesstoornis en het gevaar. Voorwaarde is dat het gevaar door een opname afgewend kan worden. Met andere woorden er is geen alternatief voor de opname (het ultimum remedium beginsel). Verschillende actoren vervullen een belangrijke rol gedurende het onvrijwillige opnameproces: zorgprofessionals, juristen, familieleden/ mantelzorgers en patiënten. 20

Ik hanteer hier de term ‘syndroom van Korsakov’, zoals ook het Korsakov Kennis Centrum gebruikt op haar website http://www.korsakovkenniscentrum.nl/syndroom-van-korsakov. Het is echter ook mogelijk om ‘de ziekte van Korsakov’ te gebruiken. Dit wordt onder andere gebruikt op de website van Dimence: http://www. betrokkenbijdementie.nl/kenniscentrum/Paginas/Ziekte-van-Korsakov.aspx

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Allemaal hebben ze een eigen, andere, kijk op de situatie waarin de patiënt zich bevindt. Wanneer deze verschillende perspectieven samenkomen, kunnen er spanningen ontstaan. Een algemeen en veel voorkomende spanning tijdens onvrijwillige opname is de spanning tussen het recht van individuele vrijheid en de behoefte om de patiënt te beschermen. In dit proefschrift worden aspecten van de onvrijwillige opname van patiënten met het syndroom van Korsakov verkend, beschreven en geanalyseerd vanuit de perspectieven van de diverse actoren. Hoofdstuk 1 beschrijft de achtergrond en doelstellingen van dit proefschrift. Het centrale doel van de studie is het vergroten van wetenschappelijke kennis over het dynamische proces van onvrijwillige opname in de langdurige zorg en het leveren van een bijdrage aan de ontwikkeling van verbeteringen in dit proces. De hoofdvraag luidt: welke spanningen, concepten en uitdagingen spelen een belangrijke rol bij het formuleren van goede zorg tijdens onvrijwillige opname van patiënten die lijden aan het syndroom van Korsakov. Naast bovenstaande worden de juridische, medische en ethische kaders van het onderzoek, de onderzoeksmethode en de kwaliteitsprocedures beschreven. De studie als geheel is kwalitatief van aard. Een op de Grounded Theory benadering gebaseerde methode is gebruikt om de empirische data te verzamelen en te analyseren. De details van de gehanteerde methodologie en procedures zijn voor elke onderdeel van het onderzoek beschreven in de afzonderlijke hoofdstukken van dit proefschrift. De hoofdstukken bevatten een zestal artikelen die zijn gepubliceerd in diverse peer-reviewed tijdschriften. Hoofdstuk 2 beschrijft de wettelijke (on)mogelijkheden van een opname in een instelling van patiënten zonder ziekte-inzicht in het algemeen en met het syndroom van Korsakov in het bijzonder. Aan de hand van een voorbeeld, ‘Mr D.’, worden de keuzen, dilemma’s en consequenties beschreven die de betrokken zorgverleners ervaren bij het zoeken naar wat goede zorg voor deze patiënten is. Zorgverleners verkeren in een spagaat tussen de mogelijkheden die de wettelijke regelgeving hen biedt en de morele verplichting om goede zorg te verlenen. Het voorkomen van schade bij de patiënt speelt hierbij een grote rol. Hoofdstuk 3 presenteert een review van literatuur. Tijdens deze review is gezocht naar artikelen die rapporteerden over studies met betrekking tot onvrijwillige opname vanuit het perspectief van patiënten en zorgprofessionals. Van beide perspectieven werden studies gevonden. Onderzoekers beschreven zowel de data vanuit een binnenperspectief als vanuit een buitenperspectief. Het binnenperspectief beschreef de ervaringen van de respondenten zelf en het buitenperspectief gaf een beschrijving van het gedrag en de situatie waarin de respondent zich bevond. Uit de resultaten van deze studies konden belangrijke thema’s herkend worden die een rol spelen tijdens een onvrijwillige opname. De ervaringen van patiënten konden worden herleid tot één kernervaring: gehoord worden of niet gehoord worden. De bevindingen uit deze review worden in dit hoofdstuk gekoppeld aan de theorie van Kari Martinsen (2006). Tijdens het proces van onvrijwillige opname blijken beide manieren van

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kijken van belang. De uitdaging voor zorgprofessionals is dan ook om aan beide perspectieven recht te doen. Er mist echter onderzoek en gedetailleerde beschrijvingen over hoe zorgprofessionals dienen om te gaan met beide perspectieven en welke hindernissen daarbij in de weg staan. Hierin ligt een uitdaging voor toekomstig onderzoek. Hoofdstuk 4 belicht het perspectief van familieleden (mantelzorgers) gedurende het proces naar een onvrijwillige opname. Uit interviews blijkt dat familieleden worstelen om goede zorg te vinden en te krijgen gedurende dit proces. De onderzoeksresultaten laten zien dat familieleden op diverse manieren (overtuigings-) kracht moeten gebruiken om ervoor te zorgen dat hun zieke familielid een menswaardig bestaan kan leiden. Familieleden moeten ten eerste zichzelf overtuigen dat het noodzakelijk is de autonomie van hun zieke familielid te schenden en ten tweede zorgverleners overtuigen van de noodzaak om zorg te verlenen. Spanningen ontstaan wanneer het schenden van de autonomie van het familielid de enige mogelijkheid lijkt om zich van een gedwongen opname te verzekeren zodat verdere aftakeling vermeden kan worden. Doordat zorgprofessionals, in bijvoorbeeld reguliere ziekenhuizen, patiënten met het syndroom van Korsakov niet altijd als zodanig herkennen (Wynia & Nieuwenhuis, 2011) of het niet noodzakelijk vinden om een onvrijwillige opname te forceren, voelen familieleden zich ongehoord en onbegrepen. Zij voelen zich genoodzaakt strijd te leveren om het zorgsysteem binnen te komen. Een mogelijke verklaring voor het verschil van aanpak tussen familieleden en zorgverleners zou het bestaan van verschillende conceptualisaties van autonomie kunnen zijn. Hoofdstuk 5 belicht het perspectief van zes patiënten met het syndroom van Korsakov gedurende een onvrijwillige opname in een instelling. Een van de kenmerken van het syndroom is confabuleren: patiënten verzinnen verhalen. Daarnaast kunnen ze verward zijn. De studie beschreven in dit hoofdstuk toonde aan dat onze respondenten, ondanks de confabulaties, waardevolle informatie gaven over de door hen waargenomen werkelijkheid. Deze studie vergrootte onze kennis over de waarde van ervaringen van patiënten betreffende hun opname. Zorgprofessionals worden aangemoedigd om deze ervaringen serieus te nemen. Door begrip te tonen voor de complexiteit en rijkheid van de verschillende perspectieven en de waarde van de verhalen te identificeren, zou dit kunnen leiden tot meer humane reacties op individuele behoeften en pijn. Hoofdstuk 6 presenteert de resultaten van een groepsgesprek met zorgprofessionals over dagelijkse problemen rondom de beslissingbevoegdheid /wilsbekwaamheid21 van patiënten in de instelling. Zij gaven daarbij aan dat de beoordeling van de beslissingsbevoegdheid van patiënten mede wordt beïnvloed door de ervaren beperking van de handelingsmogelijkheden binnen de wettelijke kaders en regels die gelden binnen de instelling. De als lastig ervaren situaties bleken vooral te gaan over het vinden van een balans 21

Het gaat hier om de vaardigheid van mensen om verstandelijke afwegingen te maken op basis van geïnformeerde beslissingen.

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tussen de autonomie van de patiënt enerzijds en diens wilsbekwaamheid anderzijds. Er zijn echter geen regels die zorgprofessionals bevrijden van hun verplichting om persoonlijk de voorkeuren en beslissingen van eventueel incompetente patiënten te beoordelen/wegen. Wel zouden zij kunnen proberen om op een andere manier te kijken naar de dilemma’s en trachten creatieve oplossingen voor dilemma’s te vinden. Hoofdstuk 7 reflecteert op de verschillende perspectieven van ‘goed doen’ tijdens het proces van onvrijwillige opname. Daarnaast beschrijft het de spanningen die zichtbaar worden tussen de verschillende actoren. Voorop staat dat alle actoren een waardevolle inbreng in het proces hebben met ieder zijn eigen verantwoordelijkheden ten opzichte van de patiënt. Gezamenlijk schetsen deze actoren een volledig beeld van de patiënt en zijn/haar situatie, mogelijkheden en onmogelijkheden. De theoretische verschillende opvattingen van verantwoordelijkheid tussen de diverse professionals kunnen een negatieve impact hebben op de patiënt. Het gaat zo ver dat als gevolg van deze theoretische verschillen de ene professional pleit voor onvrijwillige opname en de ander juist tegen een opname. Met andere woorden, de patiënt kan aan zijn lot worden overgelaten en verkommeren of juist ten onrechte worden opgenomen. Het verminderen van deze theoretische spanningen tussen professionals op kernpunten in de besluitvorming is noodzakelijk om tot verantwoorde beslissingen rondom opname te kunnen komen. In dit hoofdstuk wordt een procedurele oplossing voorgesteld. Hoofdstuk 8 vat de belangrijkste bevindingen van de deelonderzoeken samen en beschrijft aanbevelingen en beperkingen van de studies. Het hoofdstuk borduurt voort op het principe van autonomie en de verantwoordelijkheid van de verschillende actoren. Voorgesteld wordt om de negatieve gevolgen van de uiteenlopende professionele opvattingen over verantwoordelijkheid te beperken door middel van het toepassen van het idee van ‘overstijgende verantwoordelijkheid’. Dit idee houdt in dat de actoren in het opnameproces proberen kritisch en reflecterend te zijn ten opzichte van hun eigen opvattingen van verantwoordelijkheid en de opvattingen van verantwoordelijkheid van de andere actoren in het proces te erkennen. ‘Overstijgende verantwoordelijkheid’ vereist een significante verandering in het denken van professionals.

Referenties Goossensen, A., Arts, N. J., & Beltman, M. (2007). Zorgprogramma Korsakov in het verpleeghuis ‘Mij mankeert niks’ [Care Program Korsakov in the Nursing Home: Nothing’s Wrong with Me]. Rotterdam: Korsakov Knowledge Center. Martinsen, K. (2006). Care and Vulnerability. Oslo: Akribe. Van den Brink, W. & Jansen, P. L. (2009). Multidisciplinary Guideline ‘Disorders in the use of Alcohol’ (in Dutch). Utrecht: Trimbos Institute. Wynia, J.W. & Nieuwenhuis, K.G.A. (2011). Difficulties in identifying Wernicke-delirium. European Journal of Internal Medicine. 22:e160-e161.

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Dankwoord (Dutch)

“People sometimes sneer at those who run every day, claiming they’ll go to any length to live longer. But don’t think that’s the reason most people run. Most runners run not because they want to live longer, but because they want to live life to the fullest. If you’re going to while away the years, it’s far better to live them with clear goals and fully alive then in a fog, and I believe running helps you to do that. Exerting yourself to the fullest within your individual limits: that’s the essence of running, and a metaphor for life — and for me, for writing as whole. I believe many runners would agree” (Haruki Murakami, What I Talk About When I Talk About Running, 2009). Als hardloper herken ik mij in bovenstaande quote van Haruki Murakami. Gaan tot het uiterste en het beste uit jezelf halen door duidelijke doelen te stellen. Het promotietraject had alles in zich om mijn eigen grenzen verder te verkennen en te verleggen. Alleen was dit echter nooit gelukt. De mensen om mij heen zijn zeer belangrijk geweest om mij het vertrouwen te geven dat ik de finish zou kunnen halen, maar bovenal om er op de juiste momenten voor mij te zijn. Dank aan mijn ouders, familie, vrienden, kennissen en medepromovendi. Een aantal mensen ben ik in het bijzonder dankbaar. Grote dank gaat allereerst uit naar mijn leermeester, begeleider en promotor Anne Goossensen. Anne was degene die mij enthousiast maakte voor het onderwerp en mij veel heeft geleerd over wetenschappelijk onderzoek en zorgethiek. Gedurende het traject is zij in mij blijven geloven en maakte zij altijd ruimte in haar volle agenda voor overleg. Dat de finish nu is bereikt, is ook voor haar bijzonder aangezien zij haar eerste promovenda mag afleveren. Veel dank gaat ook uit naar Martin Buijsen, mijn tweede promotor. Hij zag vanaf het allereerste begin dat de eindstreep haalbaar was. Bedankt voor dit vertrouwen en de gesprekken die wij over de juridische aspecten van dit proefschrift mochten voeren. Hogeschool Inholland ben ik erkentelijk voor de geboden mogelijkheden om een promotieonderzoek te starten. De ruimte en tijd die ik heb gekregen, hebben er mede voor

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Dankwoord (Dutch)

gezorgd dat ik in een gestaag tempo kon doorwerken aan mijn onderzoek. Ondanks de roerige afgelopen jaren heb ik altijd met veel plezier mijn lesgevende activiteiten gecombineerd met het doen van onderzoek. Mijn directe collega’s ben ik dank verschuldigd voor het geduld dat zij met mij hadden als ik weer eens midden in een worsteling zat. Zonder het Korsakov Kenniscentrum had ik dit onderzoek niet kunnen uitvoeren. Het Korsakov Kenniscentrum heeft mij in contact gebracht met de instellingen waar ik terecht kon voor dit promotieonderzoek en gaf mij de gelegenheid mijn deelonderzoeken op diverse momenten te presenteren. Artsen, woonbegeleiders en patiënten ben ik zeer dankbaar voor het feit dat zij openstonden voor het delen van hun ervaringen. Ook familieleden van patiënten met het syndroom van Korsakov ben ik veel dank verschuldigd. Dankzij de vaak emotionele verhalen heb ik veel inzicht gekregen in het traject van de onvrijwillige opname. Heel hartelijk dank aan alle respondenten voor deze openheid. Ook gaat dank uit naar mijn hardloopvrienden van ‘de AMAK’ en ‘de Duinvermakers’ bij wie ik tijdens onze gezamenlijke trainingen heerlijk mijn frustraties kwijt kon door alles eruit te lopen. Daarnaast dank aan mijn paranimfen Rudy Hengeveld en Schelte Beltman. Rudy, studievriend sinds 1984, is gedurende het hele traject geïnteresseerd gebleven in de laatste stand van zaken met betrekking tot mijn promotieonderzoek en was altijd in voor een discussie. Schelte, mijn coach binnen Hogeschool Inholland, wist door vaak kleine opmerkingen mij weer in de juiste gemoedstoestand te krijgen. En natuurlijk de belangrijkste mensen in mijn leven: Kas, Julia, Gijs en Elviera. Jullie hebben al mijn hoogtepunten en dieptepunten tijdens deze lange onderzoeksperiode meegemaakt en hebben mij de ruimte gegeven om door te gaan. Ik hou van jullie.

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Curriculum Vitae

Susanne van den Hooff was born in Roden on August 27th 1965. After completion of secondary education (MAVO & HAVO) she studied one year at the Haarlem Teacher Training College. In 1988, she earned her Master degree in developmental- and neuropsychology at the VU University, Amsterdam. After graduation she held different paid and voluntary positions, including policy advisor at Ministry of Security and Justice, local council clerk in the municipality of Anna Paulowna, and volunteer at Slachtofferhulp Nederland [Victim Support]. In the mean time she became a mother of three children and studied Dutch Law at the School of Law at the Open University, Heerlen, where she obtained her Master of Laws degree in 2002. Since 2006 she is a lecturer at the Inholland University of Applied Sciences, Alkmaar. From 2010 till 2015 she worked part-time on her PhD thesis at the University of Humanistic Studies, Utrecht. Her main area of research is empirical research in the fields of ethics and law.

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List of publications

Articles Van den Hooff, S.L. & Goossensen, A. (2011). Zorgverleners in spagaat bij opname van patienten zonder ziekte-inzicht [Healthcare professionals struggling with Dutch law during admission into long-term care]. Tijdschrift voor Gezondheidszorg en Ethiek. 21(4): 107-113. Van den Hooff, S.L. & Goossensen, A. 2012. Cliënt of patiënt? De betekenis van aanspreektermen [Client or Patient? The meaning of contact terms]. Denkbeeld. 24 (juni 2012): 6-8. Van den Hooff, S.L. & Goossensen, A. (2013). How to increase quality of care during coercive admission? A review of literature. Scandinavian Journal of Caring Sciences. 28(3): 425434. Van den Hooff, S.L. & Buijsen, M. (2014). Healthcare professionals’ dilemmas: judging patient’s decision making competence in day-to-day care of patients suffering from Korsakoff’s syndrome. Medicine, Health Care and Philosophy. 17(4): 633-640. Van den Hooff, S.L. & Goossensen, A. (2015). Ethical considerations of the value of patient knowledge in nursing home care. A qualitative study of patients suffering from Korsakoff’s syndrome. Nursing Ethics. 22(30): 377-388. Van den Hooff, S.L. & Goossensen, A. (2015). Conflicting conceptions of autonomy. Experiences of family carers with involuntary admissions of their relatives. Ethics and Social Welfare. 9(1): 64-81. Van den Hooff, S.L., Leget, C. & Goossensen, A. (2015). Healthcare professionals under pressure in involuntary admission processes. Nursing Philosophy. 16(4): 177-186.

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List of publications

Conference papers and posters Van den Hooff, S.L. (2012, November).The significance of involuntary admission for proper care of patients without awareness of their illness. Poster session presented at the Working conference ‘Ethics of Care as a multidisciplinary enterprise’, Utrecht, the Netherlands. Van den Hooff, S.L. (2013, March). Toekomstige wetgeving: gevolgen voor Korsakov patiënt? [Future legislation: implications for patients suffering from Korsakoff’s syndrome?]. Presentation at an expert meeting of the Korsakoff Knowledge Center, Dordrecht, the Netherlands. Van den Hooff, S.L. (2013, March). Who cares? Struggling to impose care. Paper presentation at the Nordic Conference in Ethics in Health Services, Oslo, Norway. Van den Hooff, S.L. (2013, June). How to provide good care for patients suffering from Korsakoff’s syndrome? Presentation at an expert meeting of the Korsakoff Knowledge Center, Beekbergen, the Netherlands. Van den Hooff, S.L. (2013, October). How to provide good care for patients before and during involuntary admission? Presentation within a discussion circle at ‘Deliberations and Transformation: Challenges through the Ethics of Care. Conference’ at the BadenWuerttemberg Cooperative State University Stuttgart, Germany. Van den Hooff, S.L. (2015, April). Transcending Responsibility. Presentation given at the Philosophisch-Theologische Hochschule Vallendar, Germany.

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