a systematic literature review

National Institute for Health Research Service Delivery and Organisation Programme

Understanding place of death for patients with non malignant conditions: a systematic literature review Murtagh FEM,1 Bausewein C,1 Petkova H,1 Sleeman KE,1 Dodd RH,1 Gysels M,1 Johnston B,2 Murray S,3 Banerjee S,4 Shipman C,1 Hansford P,5 Wakefield D,1 Gomes B,1 and Higginson IJ 1 1

King’s College London, Cicely Saunders Institute, Dept of Palliative Care, Policy & Rehabilitation 2 School of Nursing and Midwifery, College of Medicine, Dentistry and Nursing, University of Dundee 3 Primary Palliative Care Research Group, Centre for Population Health Sciences, University of Edinburgh 4 King’s College London, Institute of Psychiatry 5 St Christopher’s Hospice, Sydenham, London

Published September 2012

This project is funded by the Service Delivery and Organisation Programme

© Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

Address for correspondence: Dr FEM Murtagh Department of Palliative Care, Policy and Rehabilitation King's College London Cicely Saunders Institute Bessemer Road, London SE5 9PJ Email: [email protected] This report should be referenced as follows: Murtagh FEM, Bausewein C, Petkova H, Sleeman KE, Dodd RH, Gysels M, Johnston B, Murray S, Banerjee S, Shipman C, Hansford P, Wakefield D, Gomes B, and Higginson IJ. Understanding place of death for patients with non malignant conditions: a systematic literature review. Final report. NIHR Service Delivery and Organisation programme; 2012 Relationship statement: This document is an output from a research project that was funded by the NIHR Service Delivery and Organisation (SDO) programme based at the National Institute for Health Research Evaluations, Trials and Studies Coordinating Centre (NETSCC) at the University of Southampton. The management of the project and subsequent editorial review of the final report was undertaken by the NIHR Service Delivery and Organisation (SDO) programme. From January 2012, the NIHR SDO programme merged with the NIHR Health Services Research (NIHR HSR) programme to establish the new NIHR Health Services and Delivery Research (NIHR HS&DR) programme. Should you have any queries please contact [email protected]. Copyright information: This report may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NETSCC, HS&DR. National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre University of Southampton Alpha House, Enterprise Road Southampton SO16 7NS


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Disclaimer: This report presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and not necessarily those of the NHS, the NIHR or the Department of Health. Criteria for inclusion Reports are published if (1) they have resulted from work for the SDO programme including those submitted post the merge to the HS&DR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. The research in this report was commissioned by the SDO programme as project number 09/1005/01. The contractual start date was in January 2010. The final report began editorial review in April 2011 and was accepted for publication in September 2012. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The SDO editorial team have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report documentation. However, they do not accept liability for damages or losses arising from material published in this report.


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Contents Contents ................................................................................................... 4 List of tables .............................................................................................. 9 List of figures ........................................................................................... 10 Glossary of terms/abbreviations ................................................................. 16 Acknowledgements ................................................................................... 18 Executive Summary .................................................................................. 19 Background ............................................................................................. 19 Aim ........................................................................................................ 19 Methods .................................................................................................. 19 Results.................................................................................................... 20 Conclusions ............................................................................................. 22 The Report .............................................................................................. 24 1

2

Background........................................................................................ 24 1.1

Major cost implications .................................................................. 24

1.2

Increasing public priority ................................................................ 24

1.3

Mismatch between preference and reality ......................................... 25

1.4

The evidence in cancer .................................................................. 25

1.5

The evidence in non malignant conditions ........................................ 26

1.6

Why non malignant conditions are different ...................................... 27

1.7

Why this systematic literature review is needed ................................ 27

1.8

Aims and objectives ...................................................................... 28

Theoretical modelling .......................................................................... 29 2.1

A theoretical model in cancer .......................................................... 29

2.2

Developing a theoretical model for non malignant conditions .............. 30

3

Review questions ................................................................................ 33

4

Methods ............................................................................................ 33 4.1

Identifying the evidence ................................................................. 33

4.1.1

Sources of evidence ................................................................. 33

4.1.2

Electronic databases ................................................................ 34


4

4.1.3

Search terms .......................................................................... 34

4.1.4

Outcomes ............................................................................... 36

4.1.5

Refinement of search strategy ................................................... 37

4.1.6

Reference list and cited reference searching ................................ 37

4.1.7

Hand searching ....................................................................... 37

4.2

4.2.1

Study outcomes ...................................................................... 38

4.2.2

Study population ..................................................................... 38

4.2.3

Study design ........................................................................... 39

4.2.4

Country of origin and non English papers .................................... 39

4.2.5

Other non malignant conditions ................................................. 39

4.2.6

Cross checks for inclusion of evidence ........................................ 39

4.2.7

Categorization of included studies .............................................. 40

4.2.8

Exclusions .............................................................................. 40

4.3

5

6

7

Inclusion of evidence in the review .................................................. 38

Study quality assessment ............................................................... 40

4.3.1

Quantitative evidence............................................................... 40

4.3.2

Qualitative evidence ................................................................. 43

4.4

Grading the strength of evidence .................................................... 44

4.5

Data extraction ............................................................................. 45

4.6

Synthesis of evidence .................................................................... 45

4.6.1

Presentation of quantitative evidence ......................................... 45

4.6.2

Questions addressed by the evidence ......................................... 46

Results: overview ............................................................................... 48 5.1

Evidence identified ........................................................................ 48

5.2

Inclusion/exclusion checking ........................................................... 48

5.3

Presentation of results ................................................................... 48

Results: preferences for place of care .................................................... 50 6.1


6.2

Study characteristics and quality of the evidence .............................. 50

6.3

Preferences for place of care and factors influencing this .................... 55

Results: preferences for place of death .................................................. 62


5

7.1


7.2

Study characteristics and quality of the evidence .............................. 62

7.3

Preferences for place of death and factors associated with this ........... 74

8

Results: evidence on place of death ...................................................... 81 8.1

Identified evidence ........................................................................ 81

8.2

Quality of evidence ........................................................................ 81

8.3

Heterogeneity of evidence .............................................................. 87

8.4

Categorization of variables associated with place of death .................. 88

8.5

Disease-specific analyses ............................................................... 88

9

Results: factors associated with home death .......................................... 90 9.1

Factors operating in the general non-cancer population...................... 90

9.2

Personal and demographic factors ................................................... 93

9.3

Disease-related factors .................................................................. 97

9.4

Environmental factors - social support ............................................101

9.5

Environmental factors – health and social care input.........................102

9.6

Environmental factors – macrosocial factors ....................................102

9.7

Symptoms, function, illness burden, and trajectory ..........................103

10

Results: factors associated with hospital death ...................................106

10.1

Factors operating in the general non-cancer population ..................106

10.2

Personal and demographic factors ...............................................109

10.3

Disease-related factors ..............................................................114

10.4

Environmental factors – social support .........................................117

10.5

Environmental factors – health and social care input ......................119

10.6

Environmental factors – macrosocial factors .................................121

10.7

Symptoms, function, illness burden, and trajectory .......................125

10.8

Factors specific to the COPD population ........................................127

11

Results: factors associated with hospice death ....................................134

11.1

Factors operating in the general non cancer population ..................134

11.2

Factors specific to those already referred to palliative care .............134

12

Results: factors associated with nursing home death ...........................139

12.1

Factors operating in the general non-cancer population ..................139


6

12.2

Personal and demographic factors ...............................................141

12.3

Disease-related factors ..............................................................144

12.4

Symptoms, function, illness burden, and trajectory .......................146

12.5

Environmental factors – social support .........................................148

12.6

Environmental factors – health and social care input ......................148

12.7

Environmental factors – macrosocial factors .................................149

12.8

Factors specific to dementia populations.......................................150

12.9

Factors specific to nursing home populations ................................153

13

Results: qualitative evidence ............................................................161

13.1

Chronic heart failure ..................................................................161

13.2

Chronic obstructive pulmonary disease ........................................163

13.3

Long term neurological conditions ...............................................166

13.4

End stage kidney disease ...........................................................168

13.5

Older people, including stroke and dementia .................................169

13.5.1 14

Outcomes: place of care and death, preferences, and transitions 173

Results: transitions in care towards end of life ....................................177

14.1

Transition into hospital ...............................................................190

14.2

Transition into nursing home ......................................................191

14.3

Transition back home .................................................................196

14.4

Transition to palliative care .........................................................197

15

Discussion ......................................................................................200

15.1

What is the prevalence of a home death preference? .....................200

15.2

How does this preference vary by diagnosis? ................................200

15.3

What determines preferences for place of care and place of death? .201

15.4

What factors are associated with actual place of death? .................203

15.5 What are the key transitions in care at the end of life and what influences these transitions ....................................................................209 15.6

The work of the Management Fellow within this review ..................210

15.6.1

Communication, planning ahead and enabling smooth transitions 210

15.6.2

Disease specific issues ..........................................................211


7

15.7

Strengths of this review .............................................................211

15.8

Limitations ...............................................................................213

16

15.8.1

Identifying the evidence .......................................................213

15.8.2

Heterogeneity of evidence.....................................................213

15.8.3

Quality and extent of the evidence .........................................215

Conclusions ....................................................................................216 16.1.1

Practice and policy implications..............................................218

16.1.2

Research implications ...........................................................219

References .............................................................................................220 Appendix 1: Consultation participants ........................................................236 Appendix 2: Final search strategy..............................................................238 Appendix 3: All included studies ................................................................240 Appendix 4: Excluded papers ....................................................................262 Appendix 5: Quality score for qualitative studies .........................................278 Appendix 6: Data extraction for qualitative studies ......................................282


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List of tables Table 1.

Sources of data: electronic databases and journals ...................... 34

Table 2. data

Included papers which report preferred place of care using patient ............................................................................................. 51

Table 3. proxies

Included papers which report preferred place of care as reported by ............................................................................................. 53

Table 4. Included papers which report preferred place of care reported by chart reviews and secondary analysis ......................................................... 54 Table 5.

Conventions used in the ‘bubble’ plots ........................................ 55

Table 6. Evidence on factors associated with preference for home treatment as reported by patients ............................................................................. 58 Table 7. Evidence on factors associated with preference for hospice enrolment as reported by patients ............................................................................. 60 Table 8. Included papers which report preferences for place of death in advanced non malignant conditions reported by patients ............................... 64 Table 9. Included papers which report preferences for place of death as reported by families .................................................................................. 69 Table 10. Included papers which report preferences for place of death as reported by professionals .......................................................................... 71 Table 11. Included papers which report preferences for place of death as reported from records ............................................................................... 73 Table 12.

Conventions used in the ‘bubble’ plots ........................................ 74

Table 13. Evidence on factors associated with GPs awareness of patients’ preferred place of death ............................................................................ 80 Table 14. Included papers reporting multivariate analyses on factors affecting place of death .......................................................................................... 82 Table 15. Evidence on factors associated with home death in the general advanced non-cancer population ................................................................ 91 Table 16.

Conventions used in the graphs ................................................. 93

Table 17. Evidence on factors associated with hospital death in the general non cancer population ....................................................................................107 Table 18. Evidence on factors associated with hospital death in the COPD population ............................................................................................128 Table 19. Evidence on factors associated with nursing home death in the general non-cancer population ..................................................................140 © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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Table 20. Evidence on factors associated with nursing home death in the dementia population ................................................................................150 Table 21. Evidence on factors associated with nursing home death among nursing home residents ............................................................................153 Table 22.

The definition of ‘transition’, as adopted for this review ...............177

Table 23. Included papers on transitions towards end of life in non malignant conditions ............................................................................................178 Table 24.

Participants in the consultation to develop the theoretical model ..236

Table 25. Terms used for the final search strategy (these were refined and adapted to each electronic database) .........................................................238 Table 26. The qualitative studies’ methodological quality scores (according to the method developed by Hawker et al. 2002) ............................................278 Table 27.

Data Extraction Table CHF .......................................................282

Table 28.

Data Extraction Table COPD .....................................................287

Table 29.

Data Extraction Table Long Term Neurological Conditions ............293

Table 30.

Data Extraction Table End Stage Kidney Disease ........................296

Table 31.

Data Extraction Table Older People, including stroke and dementia .... ............................................................................................298

List of figures Figure 1.

Model of the factors affecting place of care and place of death (15) 29

Figure 2. Proposed theoretical model of the factors affecting place of care and death in non malignant conditions .............................................................. 31 Figure 3.

Terms used to derive the search strategy (using PICOS) .............. 35

Figure 4. (68, 69))

Quality scale used for quantitative evidence (adapted from Edwards ............................................................................................. 42

Figure 5.

Quality scale used for qualitative evidence, from Hawker (70) ....... 43

Figure 6.

Algorithm to assess strength of evidence (15) ............................. 45

Figure 7.

PRISMA flowchart for identification of evidence............................ 49

Figure 8.

Preferred place of care as reported by patients themselves ........... 55

Figure 9.

Preferred place of death as reported by renal patients .................. 75

Figure 10.

Preferred place of death as reported by patients with CHF ......... 76

Figure 11.

Preferred place of death as reported by patients (mixed diagnoses) .......................................................................................... 77


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Figure 12.

Preferred place of death as reported by families (mixed diagnoses). .......................................................................................... 78

Figure 13. diagnoses)

Preferred place of death as reported by professionals (mixed .......................................................................................... 79

Figure 14.

Association of age with home death ........................................ 94

Figure 15.

Association of gender with home death .................................... 95

Figure 16.

Association of ethnicity with home death ................................. 95

Figure 17.

Association of marital status with home death .......................... 96

Figure 18.

Association of further education with home death ..................... 97

Figure 19.

Association of CHF with home death ........................................ 98

Figure 20.

Association of COPD with home death ..................................... 98

Figure 21.

Association of dementia with home death ................................ 99

Figure 22.

Association of renal disease with home death ..........................100

Figure 23.

Association of stroke with home death ....................................100

Figure 24.

Association of co-morbidity with home death ...........................101

Figure 25.

Association of no informal carer/living alone with home death ...101

Figure 26.

Association of hospital bed availability with home death ...........102

Figure 27.

Association of income with home death ..................................102

Figure 28. death

Association of activity of daily living (ADL) impairment with home .........................................................................................103

Figure 29.

Association of cognitive impairment with home death ...............104

Figure 30.

Association of ‘expected death’ with home death .....................104

Figure 31.

Association of trajectory of illness with home death..................105

Figure 32.

Association of age with hospital death ....................................109

Figure 33.

Association of gender with hospital death................................109

Figure 34.

Association of ethnicity with hospital death .............................110

Figure 35.

Association of marital status with hospital death ......................111

Figure 36.

Association of education with hospital death ............................112

Figure 37.

Association of preference for place of death with hospital death .113

Figure 38.

Association of personal income with hospital death ..................113

Figure 39.

Association of CHF (including heart disease) with hospital death 114

Figure 40.

Association of COPD with hospital death .................................115


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Figure 41.

Association of dementia with hospital death ............................115

Figure 42.

Association of renal disease with hospital death .......................116

Figure 43.

Association of stroke (cerebrovascular disease) with hospital death. .........................................................................................116

Figure 44.

Association of comorbidity with hospital death .........................117

Figure 45.

Association of living situation with hospital death .....................117

Figure 46.

Association of place of residence with hospital death ................118

Figure 47.

Association of carer situation with hospital death .....................118

Figure 48.

Association of hospital bed availability with hospital death ........119

Figure 49.

Association of health care provision with hospital death ............120

Figure 50.

Association of palliative care provision with hospital death ........121

Figure 51.

Association of population age with hospital death.....................121

Figure 52.

Association of population density with hospital death................122

Figure 53.

Association of population ethnicity with hospital death ..............122

Figure 54.

Association of population education with hospital death ............123

Figure 55.

Association of population religious membership with hospital death 123

Figure 56.

Association of socioeconomic factors with hospital death ...........124

Figure 57.

Association of cognitive impairment with hospital death ............125

Figure 58.

Association of functional status with hospital death ..................125

Figure 59.

Association of prognosis predictor with hospital death ..............126

Figure 60.

Association of illness trajectory with hospital death ..................126

Figure 61.

Association of geographical region with hospital death ..............127

Figure 62.

Association of age with hospital death ....................................129

Figure 63.

Association of albumin level with hospital death .......................129

Figure 64.

Association of sepsis with hospital death .................................130

Figure 65.

Association of comorbidity with hospital death .........................130

Figure 66.

Association of intubation with hospital death ...........................131

Figure 67.

Association of post intubation PH with hospital death................131

Figure 68.

Association of prognosis with hospital death ............................132

Figure 69.

Association of trajectory with hospital death ............................133

Figure 70.

Association of ventilation with hospital death...........................133


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Figure 71.

Association of age with inpatient hospice death .......................135

Figure 72.

Association of gender with inpatient hospice death ...................135

Figure 73.

Association of ethnicity with inpatient hospice death ................136

Figure 74.

Association of diagnosis with inpatient hospice death ...............136

Figure 75.

Association of symptoms (pain) with inpatient hospice death.....137

Figure 76.

Association of living situation with inpatient hospice death ........137

Figure 77.

Association of age with nursing home death ............................141

Figure 78.

Association of gender with nursing home death .......................142

Figure 79.

Association of ethnicity with nursing home death .....................142

Figure 80.

Association of marital status with nursing home death ..............143

Figure 81.

Association of education with nursing home death ...................143

Figure 82.

Association of dementia with nursing home death ....................144

Figure 83.

Association of stroke with nursing home death ........................144

Figure 84.

Association of CHF with nursing home death ...........................145

Figure 85.

Association of COPD with nursing home death .........................145

Figure 86.

Association of ESKD with nursing home death .........................146

Figure 87.

Association of co-morbidity with nursing home death ...............146

Figure 88.

Association of functional limitations with nursing home death ....147

Figure 89.

Association of trajectory with nursing home death ...................147

Figure 90.

Association of living situation with nursing home death.............148

Figure 91.

Association of PC provision with nursing home death ................148

Figure 92.

Association of socioeconomic status with nursing home death ...149

Figure 93. Association of age with nursing home death in those who die with dementia ≥ 65 years ...............................................................................151 Figure 94. Association of gender with nursing home death in those who die with dementia ≥ 65 years ........................................................................151 Figure 95. Association of country of residence with nursing home death in those who die with dementia ≥ 65 years ....................................................152 Figure 96. Association of bed availability with nursing home death in those who die with dementia ≥ 65 years.............................................................152 Figure 97. population

Association of age with nursing home death in the nursing home .........................................................................................154


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Figure 98. population

Association of gender with nursing home death in the nursing home .........................................................................................154

Figure 99. Association of marital status with nursing home death in the nursing home population ..........................................................................155 Figure 100. Association of individual care preferences with nursing home death in the nursing home population .................................................................155 Figure 101. Association of acceptance by home of resident’s choice with nursing home death in the nursing home population ...............................................156 Figure 102. Association of diagnosis with nursing home death in the nursing home population .....................................................................................156 Figure 103. Association of cognitive status with nursing home death in the nursing home population ..........................................................................157 Figure 104. Association of functional status with nursing home death in the nursing home population ..........................................................................157 Figure 105. Association of hospitalisation with nursing home death in the nursing home population ..........................................................................158 Figure 106. Association of length of nursing home stay with nursing home death in the nursing home population ........................................................158 Figure 107. Association of healthcare provision with nursing home death in the nursing home population ..........................................................................159 Figure 108. Association of number of nursing home beds with nursing home death in the nursing home population ........................................................159 Figure 109. Association of nursing home transfer policy with nursing home death in the nursing home population ........................................................160 Figure 110.

Association between age and transition into hospital ................190

Figure 111.

Association between functional status and transition into hospital ... .........................................................................................191

Figure 112.

Association between age and transition into nursing home ........192

Figure 113. Association between dementia or cognitive impairment and transition into nursing home .....................................................................193 Figure 114. Association between pre-admission living situation and transition into nursing home ...................................................................................194 Figure 115. Association between length of hospital stay and transition from hospital into nursing home .......................................................................195 Figure 116. Association between pre-admission social support and transition from hospital into nursing home ................................................................196 Figure 117.

Association between age and transition back to home ..............197


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Figure 118. Association between age and transition into palliative care programmes .........................................................................................198 Figure 119. Association between ethnicity and transition into palliative care programmes .........................................................................................199 Figure 120. Model of the factors affecting place of death in non malignant conditions (high strength evidence only) ....................................................204 Figure 121. Model of the factors affecting place of death in non malignant conditions (high & moderate strength evidence) ..........................................205 Figure 122. Factors with high strength evidence of association with home death in non malignant conditions ......................................................................206 Figure 123. Factors with high strength evidence of association with nursing home death in non malignant conditions ....................................................207


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Glossary of terms/abbreviations Abbreviations:

chronic heart failure - CHF chronic obstructive pulmonary disease - COPD dementia – not abbreviated end-stage kidney disease - ESKD motor neurone disease – MND multiple sclerosis – MS Parkinson’s disease – PD multiple systems atrophy – MSA progressive supranuclear palsy – PSP stroke – not abbreviated long term neurological condition - LTNC

Advanced disease: when treatments and other interventions are predominantly palliative and/or focused on improving quality of life rather than curing the condition. Advanced disease is defined as Class III & IV in the New York Heart Association classification1 for CHF, Stage III & IV disease for COPD2, stage 5 disease GFR 75 ▲NH death

Primary disease: Heart disease (not CHF) ▲ home death CHF no effect on home death COPD ▲ home death dementia ▲ home death dementia ▲ NH death Associated co-morbidities: co-morbidity ▼home death

Environmental factors Health and care input: Service provision:

social

Social support: Living alone ▼ home death

increased hospital bed availability ▼ home death increased hospital bed availability ▲ hospital death palliative care provision ▼ hospital death

Macro-social factors Specific symptoms. illness burden and trajectories: Degree of impaired mobility/disability severe functional impairment ▲ home death functional status - no effect on hospital death

Place of care and place of death

Personal and demographic factors:  

Hospital deaths are more likely among minority ethnic groups Those more likely to live alone (single or widowed) are less likely to die at home, and more likely to die in care homes, while those who are married are more likely to experience home death

Disease-related factors:  



Higher levels of co-morbidity reduce the chance of home death, and increase the chance of hospital death. Illnesses where there is a longer trajectory of functional impairment (even if severe) are associated with increased home death (possibly because of the time available for planning and preparation) Older patients, especially those with dementia, are most likely to die in care homes


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Environmental factors: 



Increased availability of hospital beds is consistently associated with reduced likelihood of home death and greater likelihood of hospital death, although the effect is small Greater palliative care provision (across conditions) reduces the chance of hospital death

Although environmental factors, including health and social care input, are perhaps most amenable to influence, there is relative little evidence as yet in this area. The combined quantitative and qualitative evidence also reveals that: 

Just under half of patients with advanced non malignant conditions report a preference for home death (this is notably lower than among cancer patients).



Among older people, across conditions, preferences for place of care and death are complex, highly dependent on circumstances, and may change over time.



Across all conditions, considerations of carer/family burden (as well as personal considerations) are a major influence on the preferences of those with advanced disease, and this resonates with evidence on the factors which precipitate transition into hospital or nursing home care, and likelihood of death in those places.



For those with chronic heart failure and chronic obstructive pulmonary disease: o the lack of a clearly predictable pattern of illness has a marked impact on awareness of deterioration and subsequent perspectives about place of care and death o preferences may not always be consistent with a desire for ‘open’ awareness of death



Those who prefer hospital care may relate hospital to a sense of safety and/or the perception of better chance of survival.



Those with long term neurological conditions may prefer to plan ahead, with often profound concern about burden on their family carers.



Dementia is associated with greater odds of nursing home death, while co-morbidity is associated with reduced odds of home death.


21



Other factors associated with increased likelihood of home death in non malignant conditions include being married, having further education, and having higher household income.



Living alone, the absence of an informal carer, and cognitive impairment or dementia all reduce the likelihood of home death, increase the likelihood of transition into nursing home care, and increase likelihood of nursing home death.

Conclusions The evidence on the factors influencing place of death in non malignant conditions is complex and inter-related. However, clear implications for practice, policy and research emerge from this synthesis of the evidence. Practice and policy implications: 1. A preference for home death (while still common among non cancer patients) is less prevalent than for cancer patients, so attention should be given to achieving preferred place of care and death in non malignant conditions, wherever that place is. 2. For those with non-cancer conditions, the presence or absence of a family or informal carer is a key component in achieving home death. Effective and sustained carer support, especially in context of longer illnesses trajectories, is likely to increase home death rates. 3. Minority ethnic groups, and those with lower socio-economic status achieve lower rates of home death; best practice initiatives need to target this imbalance, while still taking preferred place into account. 4. For older people, advance care planning is especially important, as their preferences are complex, highly dependent on circumstances, and may well evolve over time. The advance care planning they require therefore needs skilled professionals who can re-visit preferences and planning sensitively and frequently in response to change. 5. In addition, older people are more likely to die in care homes, especially if there is cognitive impairment or dementia. Resources need to be targeted both at improving care home deaths and ensuring the opportunity for home death among older people (especially those who live alone) is adequately supported, when desired and feasible. © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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6. For those with end-stage heart or respiratory disease, the conception of an ‘open’ awareness of approaching death and forward planning of health care to accommodate decline (derived largely from models of care in cancer), is not always appropriate. Again, skilled advance care planning is important, to work across the range of awareness, and to respond to rapidly changing circumstances. 7. In those conditions with longer trajectories, for instance some long term neurological conditions, advance planning may be welcomed and home death can be supported even when there is marked functional impairment. 8. The increase in the ageing population, with correspondingly higher levels of co-morbidity, will likely mitigate against home deaths and in favour of hospital deaths, unless innovative approaches can be developed to support those with complex co-morbidities in the community. 9. Increased resources for the delivery of palliative care early in the illness trajectory across non malignant conditions will likely reduce hospital deaths. Research implications: There are major gaps in the current evidence to inform practice and policy, and research is particularly needed: 10.To provide insights into how preferences for place of care and death among those with advanced non malignant conditions evolve over time and with advancing illness, and what factors shape these preferences. 11.To understand how duration and trajectory of illness affect transitions in place of care, and place of death. 12.To determine how health and social care provision in non cancer conditions can influence place of care and death.


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The Report 1 Background The numbers of UK deaths are predicted to rise by 17% between 2012 and 2030 (3). Planning and providing the health and social services to address this rise is an urgent priority, and will require either substantial increase in provision for institutional end of life care, or considerable expansion of community services to support home deaths, or both. Understanding the factors which influence home deaths in non malignant conditions will play a significant part in informing this planning process.

1.1 Major cost implications Overall, health care towards the end of life places major resource burdens on the NHS. Between 10-20% of healthcare expenditure is spent on care in the last year of life (4-6); in the UK, this is currently between eight and 16 billion pounds per annum (£8,000 – 16,000 million) (7). Much of this cost relates to hospital rather than home care (6, 8). End of life care at home is, in general, less costly than end of life care in hospital (9), and a recent National Audit Office report highlights the considerable cost savings which could be achieved in acute healthcare by reducing hospital admissions and increasing home and community care in the last year of life (8).

1.2 Increasing public priority However cost, while important, is only one consideration. The quality of life, care, and death of patients at the end of life is a growing public priority. Across Europe and the UK, the public have themselves identified quality of life as a top priority towards end of life (10). End of life care is now at the forefront of NHS health policy for England, as highlighted by the End of Life Care Strategy (11). Attention is focused on improving end of life care for all, regardless of diagnosis (11), with the aim of delivering high quality care (12) which is responsive to patient choice (13). In the context of increasing public awareness and demand for choice, to be cared for and to die at home (if this is the preferred option) has become a key NHS objective. The End of Life Care Strategy emphasises choice in place of death, and encourages commissioners to provide the services to support an increased number of


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home deaths (11). The Marie Curie ‘Delivering Choice’ programme3 has also recognised this priority, and seeks to enable local service development to support home deaths. Delivering high quality care in the setting of choice represents best use of the considerable resources expended on care towards the end of life.

1.3 Mismatch between preference and reality A key component of high quality care is the extent to which care is adapted to the preferences, expectations and values of patients and their families (14). Understanding preferences for place of care and death, along with factors influencing place of death, and transitions in place of care is essential to both improve care and ensure it is of the highest quality. Reviews of the evidence on preferences, factors, and influences on place of death for cancer patients have informed the provision and development of generalist and specialist end of life services (15-17). However, less attention has been given to preferences, factors, and influences on place of death for the greater numbers of people dying with non malignant conditions. It is timely therefore to review this evidence in those with non malignant disease, especially given the future changes in mortality in an ageing population, with increasing numbers dying at older ages and with chronic non malignant conditions (18).

1.4 The evidence in cancer Among cancer patients and their families, most (50-70%) prefer to die at home (15, 16), although there is variation across studies, and according to whether the views of patients, or relatives are sought (19). Despite the overall high preference for home death (at least among cancer patients), many do not achieve this preference. Hospital death remains the most common occurrence in developed countries (18). In the UK in 2005, 59% of all deaths occurred in NHS hospitals, but only 18% occurred at home, rising to 35% if care homes are included (20).

3

www.mariecurie.org.uk/en-gb/healthcare-professionals/innovation/Delivering-Choice-Programme/


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1.5 The evidence in non malignant conditions In the UK, most people die from causes other than cancer, with only 27% of deaths from cancer (20). While 23% of cancer deaths are at home, the situation is very different in non malignant conditions. Only 12% of deaths from respiratory causes and neurological causes occur at home, for instance, while in dementia most deaths occur in care home settings (55%) or hospital (39%) (21). The proportion of home deaths is also falling over time, from 31% in 1974 to 18% by 2005, and this fall is most pronounced among those with non malignant disease (3, 20). What proportion of those with non malignant disease prefer home death, and what influences these preferences, has not been systematically appraised. Factors associated with home death have been reviewed in cancer, but not in non malignant conditions. In the latter, symptomatology and dependency may be a more important influence on place of death than, for example, age or disease type (22). There may be clear distinctions between preferences for place of care and place of death (23). Some studies also report somewhat unexpected detail: for instance, Seymour and colleagues report high preference for hospital care and death among Chinese people (24), and Tang et al report considerable discordance between patient and family carers preference for place of death (25). This evidence needs to be understood in order to determine how end of life care can best be delivered.

Understanding the current evidence on preferences for place of care and death, and factors which influence both the preference and the reality of place of death will contribute to developing best models of care, both through the synthesis of evidence and through the identification of gaps in it. Several authors have identified the need for different models of end-oflife care, in end-stage heart failure (26-28) and advanced chronic obstructive pulmonary disease (29-31). Evidence reviews on end-of-life care in dementia raise the challenges of prognostication (and hence achieving appropriate emphasis on and timing in provision of end of life care), of achieving good symptom control, and of high quality communication (32), and again emphasize the need for different models of care (33-35). Some of the evidence is focused on populations in one particular setting (36), or on older people (37, 38), rather than on specific disease groups. Overall, the predominant focus has been on drawing together evidence on symptoms and other needs in the different non malignant conditions, and considering how models might differ from that established for cancer patients, rather than on understanding the current evidence on preferences and factors influencing place of care and death, and transitions in care.


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1.6 Why non malignant conditions are different There are several reasons why considerations of place of care and death for those with non malignant conditions may be very different for those with cancer. First, those with non malignant conditions are often older, especially for diseases such as dementia or organ failure (20, 22). Second, the trajectory of illness differs for those with non malignant disease, with, for instance, a more fluctuant course in organ failure (39), and poorer function and protracted decline in dementia (32). This may influence treatment and other preferences (40), affect advance planning (41), and hinder appropriate transitions in care (42). Third, prognostication is more difficult for those with non malignant disease, which makes prediction and anticipation of end of life more challenging (43-45). And fourth, communication with patient and family about this more uncertain prognosis may be particularly difficult (32, 46, 47). Models of end of life care in non malignant disease, where they exist, are largely derived from the cancer model, with limited evaluation of how suitable they might be in advanced non malignant disease (48), and generalist end of life care for those with non malignant conditions remains diffusely conceptualised, with a limited evidence base and little testing or evaluation of interventions (49, 50).

1.7 Why this systematic literature review is needed In the face of these considerations, there is some evidence on the preferences for place of care and death, influences on place of death, and transitions in care for those with non malignant disease. Older patients (51) and those dying of certain non malignant diseases (52) are less likely to die at home. They do experience similar (or even greater) levels of symptoms and distress as those with cancer (27, 47, 53-56). But despite these considerable needs, they access fewer services towards the end of life than cancer patients (57), and their preferences for place of death are often not met (52). Factors that influence place of death, include illness-related factors such as illness trajectory (51), and service-related factors, such as availability of hospital beds (52). But to date this evidence has not been systematically reviewed, and in particular, comparisons between diseases and across ages to inform care as patterns of disease and mortality change have not been made.


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1.8 Aims and objectives In this project, we therefore aim to identify, critically appraise, and synthesize the evidence on preferences regarding place of care and place of death, factors influencing place of death, and key transitions towards end of life, for patients with advanced non malignant conditions.

Specifically, we:

1. Identify the extent to which people with non malignant disease actually want to die at home, describing the proportion with a home preference, the quantity, quality, and strength of the evidence, and identifying gaps in the evidence; 2. Identify what determines preferences for place of care and place of death among those with non malignant conditions and their families, and how preferences change according to different influences and over time; 3. Determine which factors are associated with place of care and death (and hence reasons for variation in place of death) for patients with non malignant disease, with a focus on the influence of health and social care resources at home; 4. Identify key transitions in care at the end of life for patients with non malignant disease, and perceived barriers/facilitators to these transitions. In order to concentrate the review, we focused specifically on six non malignant diseases: chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD), dementia, end-stage kidney disease (ESKD), long-term neurological conditions (as defined for the National Service Framework for Long Term Conditions (2): motor neurone disease (MND), multiple sclerosis (MS), Parkinson’s disease (PD), multiple systems atrophy (MSA), and progressive supranuclear palsy (PSP)), and stroke.


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2 Theoretical modelling 2.1 A theoretical model in cancer An explanatory model for the factors influencing the place of care and death for patients with advanced cancer has already been developed by Gomes and Higginson (15) (see Figure 1). Figure 1. Model of the factors affecting place of care and place of death (15)

This incorporates patient, family, and professional perspectives, but is essentially patient-centred, placing the patient in the heart of the model. It adopts a bio-psychosocial framework, appropriate for the integrative, comprehensive and multidimensional study of the individual, as well as a useful conceptual framework for provision of health services. It is also appropriate to palliative care, as it comprises the holistic principles of care based on the whole person. It can be described as a multi-theoretical model that comprises contributions from an ecological perspective (58) and from crisis theory applied to coping with physical illness (59, 60). Place of care and death are analysed taking into account the physical environment and its relationship to people at individual, interpersonal, organizational and © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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community levels. Crisis theory enables understanding of serious illness as a life crisis or disruption which people have to cope with in order to (re)establish a balance. Adaptive coping with illness has already been conceptualised as depending on the characteristics of the patient, aspects of the illness, and specific features of the physical and social environment (59, 60).

2.2 Developing a theoretical model for non malignant conditions Bearing these perspectives in mind, the model developed by Gomes and Higginson has been used to explain place of care and place of death for cancer patients, based on dynamic interactions between three groups of factors. We have extended this model, using both theoretical and clinical perspectives on the potential factors which influence place of care and death for those with non malignant conditions. This extended model incorporates contributions from the chronic illness literature (61-64), including experiential and societal perspectives pertinent to non malignant disease.

In addition, and because of the limited theoretical context for non malignant end of life care, we conducted a detailed consultation exercise to incorporate those factors considered most relevant for non malignant conditions. In this way, the extended model (see Figure 2 overleaf) was derived from 1) theory, and 2) expert consensus through extensive consultation with the Project Advisory Group and invited experts in the different disease areas (see APPENDIX 1 for details of those who participated in the consultation).

We believe it is important to define and conceptualise this area prior to reviewing the evidence in order to enable a more objective assessment of the review findings, and especially to inform our subsequent consideration of gaps in the evidence.


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Figure 2. Proposed theoretical model of the factors affecting place of care and death in non malignant conditions


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3 Review questions Our review questions are: Among those with non malignant disease and their families: 1. What is the prevalence of a home death preference? 2. How does this preference (and the evidence relating to it) vary by age, type of disease, stage of disease, and co-morbidity? 3. What determines, shapes, or changes preferences for place of care and place of death? 4. What factors are associated with actual place of death? 5. How do health and social care resources influence actual place of death? 6. What are the key transitions in care at the end of life? 7. What influences these transitions? For each question, we report our findings, with details of the quantity, quality, and strength of the evidence. We also identify the gaps in the evidence.

4 Methods 4.1 Identifying the evidence 4.1.1 Sources of evidence A variety of data sources and procedures as itemised below were used to identify relevant evidence:   

six electronic databases (Medline, Embase, Psychinfo, Cinahl, British Nursing Index, and ASSIA) reference lists of relevant primary studies identified in the electronic search cited reference searching of all included studies

Figure 3 provides further details of the electronic databases and journals searched. © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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Table 1. Sources of data: electronic databases and journals

Electronic Databases MEDLINE (OVID Medline ® In-Process & Other Non-Indexed Citations and Ovid Medline ® from 1950 to 30 March 2010) EMBASE (OVID From 1980 to 6 April 2010) PSYCINFO (OVID, from 1806 to 30 March 2010) CINAHL (From 1980 to 7 April 2010) British Nursing Index and Archive (BNI) (OVID from 1985 to 7 April 2010) Applied Social Sciences Index and Abstracts (ASSIA) from 1987 to 13 April 2010

4.1.2 Electronic databases Six electronic databases were selected to ensure a diverse and comprehensive search, including databases with different traditions and backgrounds: medical (MEDLINE); biomedical and pharmacological (EMBASE); psychological (PSYCINFO); nursing and allied health literature (CINAHL); nursing and midwifery (BNI); and social (ASSIA) literature. The search strategy was developed and refined in all six databases according to the terms used in each database, due to differences in subject headings and/or Boolean characters in each database.

4.1.3 Search terms The search strategy was developed by deriving terms from the PICOS (Population, Intervention, Comparator, Outcome, Study Design) approach from the NIHR Centre for Reviews and Dissemination in York (65) as adapted to the aims and objectives of this review. Figure 3below provides a graphical representation of these terms.


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Figure 3. Terms used to derive the search strategy (using PICOS)

Extensive scoping searches were then undertaken to develop and refine the search. We used ‘sentinel’ papers (key papers identified as representing the area of interest for the review) to test the sensitivity and specificity of our search strategies. Given the very large number of studies identified in the preliminary literature scoping, it was decided to use a search strategy with mid range precision, appropriate to the aims and time constraints of the review, and to include reference list and cited reference searching for all included studies. Reference list and cited reference searching proved a more precise way to capture evidence in what was a very wide ranging search.

This systematic review focuses on actual and preferred place of death for patients with non-malignant diseases, as well as preferences and transitions in relation to this. Therefore the search strategy aims to use terms within the following areas (terms in bold type correspond to Figure 3:

(1) Non-malignant diseases (six main examples: Chronic Obstructive Pulmonary Disease (COPD); Chronic Heart Failure (CHF); Dementia; End-stage Chronic Kidney Disease (ESKD); Long Term Neurological Conditions (LTNC) and Stroke)


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(2)

Advanced disease

(3)

Outcomes (place of death; preferences for place of care or death; transitions in care, including place of care)

(4)

Factors and variables influencing the outcomes

(5) Study design (no limitations on design included in the search strategy)

4.1.4 Outcomes For the purpose of this systematic review, we considered the outcomes as the dependent variables. Factors that influenced the outcomes were considered to be the independent variables. Some variables operated both as dependent and independent variables – for example, the review was interested in preferences about place of death as an outcome, but preference for place of death may also operate as a factor influencing actual place of death.

A transition is defined as ‘a change in setting or place of care, a change in focus of care, or a distinct change/movement in the patient’s emotional or psychological journey’ (see GLOSSARY). This definition was agreed after expert consultation. This review was interested mostly in transitions of setting, care, or focus of care i.e. change in focus from active to palliative care, recognizing that most of the published literature concerns changes in the setting of care. A note needs to be made of some country differences in palliative care provision, which can influence the definition of “transitions” and, in consequence, the search. For instance, in a Canadian definition of transition (66), transition is defined as: 1) a change in location of where the patient was cared for; or 2) a change in which service (specialist groupings, primary care) provided care. We have adopted a wider definition:

“a change in setting or place of care, a change in focus of care, or a distinct change / movement in the patient’s emotional or psychological journey”.

because of feedback during our consultation with experts and clinicians on the theoretical model that the transition of a patient in terms of their


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emotional acceptance or denial of their illness can be one of the key determining factors in the outcomes of interest (i.e. place of care or death). We do not include “preferences” in the search terms for the outcome “preferences for place of care or death” because our scoping searches indicated that this did not improve the sensitivity of our searches, while making them less specific.

4.1.5 Refinement of search strategy The disease terms were discussed and refined extensively with experts in the six non malignant conditions, and the final search strategy is available in APPENDIX 2. The MeSH headings for each illness were presented to clinical experts in the six non-malignant disease areas, discussed and refined following discussion. For example, following one expert recommendation (Prof. Turner-Stokes), we introduced Huntington’s disease in the search terms for long term neurological conditions. The severe progression of this illness is typically predictable, which is why it was considered likely that studies of this condition may be informative about patient preferences. We also added the term “advance care planning” following expert consultation.

4.1.6 Reference list and cited reference searching In addition to the above database searches, the reference lists of all included papers were searched. Cited reference searching was undertaken for all included studies, using Scopus and Web of Science. The reference lists of studies which fulfil the inclusion criteria apart from containing original data (i.e. relevant systematic reviews, discussion papers, editorials and commentaries, but not books, letters, guidelines, authors’ response, case reports or case series, were also searched. The decision was taken not to hand-search either palliative or diseasespecific journals, given the inclusion of all relevant journals into the electronic databases, the diversity of conditions and the concentration of disease-specific evidence into more recent years (and hence greater likelihood of electronic indexing of this evidence).

4.1.7 Hand searching We originally intended to include hand-searching of key journals not indexed in the electronic databases, but initial hand searches did not add additional evidence, particularly once reference list and cited reference searching was included, so hand searching was omitted, and our resources focused on detailed reference list and cited reference searching. © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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4.2 Inclusion of evidence in the review This systematic literature review aimed to capture all studies which reported original data on place of death, preferences for place of care/death, and transitions for patients with non-malignant conditions, including transitions in place of care. Of particular interest were studies which reported factors associated with any of these outcomes, and where the factors were analysed using multivariate methods. Studies were included in the systematic review on the basis of the following criteria: 1. Outcomes 2. Population 3. Study design These criteria are modified from the PICOS (Population, Intervention, Comparator, Outcome, Study design) approach laid out in the CRD’s revised ‘Guidance for Undertaking Reviews in Healthcare’, published by the NHS Centre for Reviews and Dissemination in Jan 2009 (67).

4.2.1 Study outcomes Studies were included if they relate to any of these outcomes:  Place of death 

Preferences for place of care or death



Transitions in care4

4.2.2 Study population Studies were included if the study population included or related to participants: 

Over 18 years



With non-malignant disease (≥ 50% of participants with non cancer conditions)



With advanced disease

5

4

Full definition is in GLOSSARY on page 15

5

Full definition is in GLOSSARY on page 15


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If limited information about participants’ diagnosis (or other selection criteria) was given, the authors of the paper were approached in order to clarify this. If no further detail was forthcoming, a decision was made as to whether the study population was likely to include ≥ 50% non cancer conditions on the basis of setting/context. For instance, studies conducted within a whole population or representative sample of a whole population were judged likely to contain ≥ 50% non cancer conditions, as were studies in nursing home populations; these studies were included. For studies conducted within specific palliative care services, a judgement was made on the basis of information about service and setting provided within each paper as to whether the study population was likely to include ≥ 50% non cancer conditions or not.

4.2.3 Study design All studies which reported original data were included. We included studies regardless of study type or publication status, and (as already mentioned) approached the authors where necessary for the full study details. Systematic and non systematic reviews, discussion papers, commentaries or editorials which related to the population and outcomes of interest, but which did not contain original data were excluded, but retained for reference list and cited reference searching.

4.2.4 Country of origin and non English papers Studies containing original data which met the population, outcome and study design criteria above were included regardless of the country in which the research took place. We included both English and non English language papers, and made every effort to incorporate the non-English papers into the review through translation by members of the wider team, and our collaborators (through which we have access to a wide range of language skills); when this was not possible, details are provided.

4.2.5 Other non malignant conditions Although the search concentrates on six conditions as exemplars of nonmalignant conditions, we included studies with focus on other nonmalignant illness. However, our search was not targeted to these other conditions, and conclusions in relation to these conditions are inevitably constrained.

4.2.6 Cross checks for inclusion of evidence Three reviewers were involved in the selection process of studies for inclusion. One reviewer applied the selection criteria to the title and © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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abstract of each identified study, and categorised into: (a) ‘definitely included’, (b) ‘definitely excluded’, (c) ‘uncertain’, and (d) ‘excluded but of interest’ (this category relates to any systematic or non-systematic reviews, discussion papers, commentaries or editorials, which did not contain original data). All papers in the categories (a) ‘definitely included’ and (c) ‘uncertain’ were then reviewed by the second and third reviewers (independent of each other) to assess separately for inclusion/exclusion. In cases of disagreement, inclusion/exclusion was then discussed between the three reviewers to reach consensus. In order to assess the reliability of the inclusion/exclusion decision process, a random sample (10%) of (b) ‘definitely excluded’ were also reviewed for inclusion/exclusion independently, and the agreement reported.

4.2.7 Categorization of included studies Included studies were categorized by three criteria: (1) population or setting, (2) diagnosis, and (3) the outcomes of interest, namely place of care and place of death, preferences, or transitions.

4.2.8 Exclusions We excluded studies with no assessment of an outcome for interest for this review, or with a non-eligible population (e.g. under 18 years of age/paediatric, > 50% cancer diagnosis, or early stage of disease). We also excluded studies without original data, such as reviews, discussion papers, papers reporting duplicate data, editorials, commentaries, case histories, historical overviews.

4.3 Study quality assessment For assessing the quality of individual studies, we sought quality assessment scales which met specific quality criteria relevant for this review:

4.3.1 Quantitative evidence Focusing on observational studies (we anticipated few, if any, interventional studies since observational designs are the most frequently used designs used to test real world associations), the criteria which we considered important included: study design, uniformity or heterogeneity in disease stage, sample and group description, representativeness of sample, explicit inclusion/exclusion criteria, acceptable response rate, adjustment for confounders, and reliability and objectivity in outcome assessment. In reviewing factors, methods to control for confounding, and use of multi© Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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variable analysis, if appropriately conducted, was rated more highly than unadjusted and uni-variate designs. Longitudinal design, especially with regard to preferences, was more highly rated. Using these criteria we therefore assessed whether there were appropriate pre-existing quality scales. One scale met almost all of our criteria; that developed by Edwards (68) and subsequently adapted by Higginson (69) (see Figure 4). We made minor modifications, predominantly around clarifying the language to help ensure consistency of quality scoring. This scale does not address uniformity or heterogeneity in disease stage; however, we found that few studies reported stage of disease, so this was not likely to be a discriminatory criterion. We also decided to consider multi-variate analysis within the grading of evidence rather than the quality assessment.


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Figure 4. Quality scale used for quantitative evidence (adapted from Edwards (68, 69))


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4.3.2 Qualitative evidence For qualitative studies, the quality criteria we sought included: credibility of findings (transparency, coherence, resonance with other knowledge, and corroboration / triangulation), rationale and appropriateness of design, degree of coverage (details of coverage, maximising inclusion, reasons for non-participation, discussion of access), transparency of reporting, rationale/rigor in analysis, and context/interpretation. We identified the scale proposed by Hawker (70) as most appropriate for our review, and adopted it with only one small modification; the original scale assesses ethics and bias together (see item 6, in Figure 5), which we divided into two separate items and assessed individually. Following the original scoring system, each area was rated on a 4-point scale from 1 (very poor) to 4 (good), where the total minimum score equalled 10, and the total maximum score, 40. Figure 5. Quality scale used for qualitative evidence, from Hawker (70)


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4.4 Grading the strength of evidence For the quantitative evidence, we graded studies as high, medium, or low quality in the same way as a similar review of evidence on factors affecting place of death in cancer (see Figure 6). This grading follows a previous system used on risk factors (71), and the patient-centred approach of the SORT taxonomy (72). According to this grading system, studies are high quality if they perform a multi-variate analysis and have an individual quality score ≥ 70%, or medium quality if they perform a multi-variate analysis and have a individual quality score < 70%. A minimum of three high quality studies where ≥ 70% of studies report similar findings constitutes high strength evidence, whereas at least three medium quality studies with >50% agreement constitutes medium strength evidence. Given the extent of confounding in unadjusted and univariate analyses, we focused on multi-variate studies as far as possible, unless there was a complete absence of multi-variate analyses when we report what these lower levels of evidence might suggest.


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Figure 6. Algorithm to assess strength of evidence (15)

With the qualitative evidence, we undertook a narrative synthesis, with integration of quantitative and qualitative findings at the level of the discussion. The heterogeneity of qualitative findings made it too challenging to integrate evidence at the level of the results.

4.5 Data extraction For each included quantitative study, data was extracted by individual team members onto an electronic data extraction form. All data extraction was re-checked by a second member of the team. For reasons of time, qualitative studies were only extracted once, although the final synthesis was reviewed by a second researcher (CS) who was not involved in the original qualitative extractions, and who reflected on consistency and inclusion of findings.

4.6 Synthesis of evidence 4.6.1 Presentation of quantitative evidence For each outcome, we report those factors which are shown to have no association with the outcome of interest, as well as those factors which do have an association with the outcome of interest. This is because it is also important to understand which factors have been studied and found not to be relevant. However, only statistically significant factors with association with the outcome of interest are taken forward into the final models. We have excluded factors which are relevant to a specific local, regional, or national context – for example, payment source of Medicare or Medicaid in the US in relation to place of death – although we have included


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geographical and ecological factors in order to gain insight into the relative importance of these, both independently and in relation to other factors.

4.6.2 Questions addressed by the evidence Findings are summarized descriptively, and conclusions drawn as to the quantity, quality, and strength of the evidence, for each review question in turn. We report: 1. What is the prevalence of a home death preference? Data on prevalence of preference is grouped and mean prevalence weighted by study size and range is reported. 2. How does this preference (and the evidence relating to it) vary by age, and diagnosis? Evidence is broken down by age and type of disease where possible. It was not possible to further analyse according to stage of disease (early or late stage), or co-morbidity because of limitations in the evidence. As far as possible from the available evidence, we make comparisons across the six non malignant diseases. 3. What determines, shapes, or changes preferences for place of care and place of death? This is addressed predominantly by the qualitative evidence. Findings on preferences are integrated in order to summarize the available evidence and also provide new insights from the process of integration itself, while retaining the character and essence of the observations from participants in the studies or made by the authors of the studies. 4. What factors are associated with actual place of death? We group factors according to the theoretical model (Figure 2) and analyse for the direction of effect (for and against home death, and for and against hospital death) and consistency of findings (number of studies reporting the effect out of total studies included). We also compare direction and consistency of factors between diseases. We extract the odds ratios (where available) reported in included studies for those factors supported by sufficiently strong evidence. We also conduct a sensitivity analysis to determine if a different grading threshold alters findings. 5. How do health and social care resources influence actual place of death? We intended to analyse included studies which relate to health and social care resources, again for direction of effect (home or hospital) and consistency (number of findings reporting the same effect out of the total number of studies), but also report the relative impact of different health and social care resources, using odds ratios where sufficiently strong evidence exists. However, there was insufficient detail within studies to make this feasible.


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6. What are the key transitions in care at the end of life? We describe the key transitions identified, and the evidence which supports this, as well as the qualitative evidence on transitions in care. In a final step, we draw conclusions about the extent of the evidence and gaps in it.


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5 Results: overview 5.1 Evidence identified We identified 10,350 articles from the six electronic searches, excluding duplicates. After screening the title and abstract, we excluded 10,112 records, leaving 238 eligible articles which met our inclusion criteria. We then conducted reference list and citation searching of these records, and identified a further 600 studies. Following de-duplication, this generated 559 records, of which 11 were unobtainable; either not available in full text format (n=5), or were in a language for which we could not obtain a translation (n=6). Therefore 548 full-text articles were assessed in detail for eligibility, of which we excluded 258, based on a decision which followed the protocol for exclusion. A record of each excluded study and the reason for exclusion is available in APPENDIX 4. Finally, we included 290 studies, of which 234 used quantitative methods, 55 used qualitative methods, and 1 was mixed (both qualitative and quantitative) methods. Figure 7 overleaf demonstrates the flow of evidence through the review. A complete list of all included studies is available in APPENDIX 3.

5.2 Inclusion/exclusion checking Of the 290 included papers, 11 (3.8%) required consensus discussion to reach agreement on inclusion/exclusion. Seven of these papers had originally been identified as ‘uncertain’ for inclusion. Only two papers were identified as incorrectly excluded in the review of a 10% random sample of excluded papers by a second reviewer.

5.3 Presentation of results We go on to present the review findings according to each review question.


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Figure 7. PRISMA flowchart for identification of evidence

Identification

13,736 records identified through database searching

Screening

10,350 records after duplicates removed

10,350 records screened

Eligibility

10,112 records excluded

238 records included

600 additional records identified (after title and abstract screening) through reference and citation searching of the 238 included studies

559 records included after duplicates removed

11 studies unobtainable (5 studies unobtainable in full text; 6 studies unable to translate: Japanese n=4, Icelandic n=1, Korean n=1)

548 full-text articles assessed for eligibility

258 full-text articles excluded, with reasons

Included

290 included (QUAN and QUAL) 234 quantitative studies 1 mixed method (quantitative and qualitative) study, included in both the quantitative and qualitative analyses 55 qualitative studies


49

6 Results: preferences for place of care 6.1 Evidence identified Just six of the included papers described preferences for place of care among people with advanced non malignant conditions. Two of these papers provided information on preferences for both place of care and place of death (73, 74). Because of the established differences between patient and proxy perspectives regarding preferences, and the marked limitations in using records to capture preferences, we present the evidence according to the data sources used: either i) data derived directly from patients themselves, ii) data derived from proxy sources (families or professionals), and iii) data derived from medical records. As there may be differences in perceptions and preferences on place of care versus place of death, we report preferences for place of care here, and address preferences for place of death subsequently.

6.2 Study characteristics and quality of the evidence Studies describing preferences for place of care reported i) by patients with non malignant conditions themselves included 449 patients, ii) by professional and family caregivers documented information on 327 residents, and iii) by review of medical records provided information on 24,880 patients. (This latter evidence came from medical records of 232 patients, plus secondary analysis from a minimum data set from a further 24,648 patients). Five of the six studies came from the USA and one from the UK. i) Data from patients themselves on preferred place of care Three papers reported patients’ preferences for place of care (73-75) (see Table 2). As data and results from the two studies published by Fried are identical, we treat the two papers as one study. Among these included studies, the study design varied; one study collected cross-sectional data (75, 76) while the other study was a prospective cohort study conducted over 24 months (74). The study populations and settings also differed; one study included community dwelling persons with COPD, CHF and pneumonia two months after hospitalisation (75, 76) while the remaining study described preferences of patients suffering from COPD, CHF and cancer (74).


50

Table 2. Included papers which report preferred place of care using patient data Paper

Country

Design

Data

Study

collection

setting

Participants

Target

Mean age,

Disease

age

yrs (SD)

group

group

(range or

N

Preferences for

Quality

place of care

score

Factors

Home 46% Hospital 54%

50%

6 factors; preference was not associated with age, sex, ethnicity, education, diagnosis, or functional status.

63%

Bi-variate analysis: 6 factors for home treatment: race, education, finances, living with spouse, religiosity, ADL status (all relative risk) White 1.58 (0.80-3.14) College or more 1.42 (1.09-1.86) money left over at end of month 1.20 (0.91-1.58) lives with spouse 1.29 (0.98-1.68) deeply religious 1.32 (1.00-1.74) ≥ 2 ADL dependencies 1.60 (1.18-2.15) also factors on perceptions about treatment at home and in the hospital

75%

20 factors influencing hospice enrolment, bi-variate analysis

proportions if mean and SD not provided)

Fried 1999

Fried 2000

Casarett 2006

USA

crosssectional

quantitative and qualitative telephone interviews

2 months after hospitalizati on

community dwelling persons with CHF, COPD, or pneumonia

≥ 65 y

75.6 (6.8)

COPD 26% CHF 47% Pneumonia 37%

246

USA

crosssectional

telephone interviews

2 months after hospitalizati on

community dwelling persons with CHF, COPD, or pneumonia

≥ 65 y

75.6 (6.8)


246

USA

prosp cohort study (secondary data analysis)

multiple interviews over a period of up to 24 months

ambulatory primary care and specialty clinics, general medicine inpatient units

Ambulatory and inpatient care

≥ 60y

73 (range 6093)

Cancer 32% COPD 30% CHF 38%

203

TOTAL PARTICIPANTS

449

Home 46% Hospital 54%

Hospice enrolment 30%

(Fried 1999 and Fried 2000 relate to the same study)


51

Both studies on patient preferences which collected data directly from patients interviewed the patients directly, Fried over the telephone (75, 76) and Casarett in consecutive personal interviews (74). In the study by Fried et al, patients were asked about their last hospital admission and a hypothetical scenario where they could get similar investigations and treatment, and their preferences in relation to this (75, 76); 46% preferred home care, and 54% preferred hospital care. In the second study by Casarett and colleagues, patients were interviewed to determine whether patient preferences were a barrier to hospice enrolment (74); 30% enrolled in hospice. Both studies by Fried et al were scored as moderate quality and the paper by Casarett as high quality (74). ii) Data about patients preference for place of care as reported by proxies Just one study reported information from after-death interviews with family and staff caregivers of nursing home residents on decisions made about specific life-sustaining treatments (LSTs) among residents in long-term care (LTC) settings (77) (see Table 3). Detailed information on patients’ diagnoses was not reported in this study. This paper was of low quality, however it reported that 32% preferred hospitalisation and 45% preferred not to be hospitalised. iii) Data about patients preference for place of care reported using medical records Three studies presented data from chart reviews (78, 79) or a medical database (80) (see Table 4). One by Anderson reports advance care planning documents from nursing home residents with end stage renal disease on peritoneal dialysis (78); 13% preferred nursing home care (not to be hospitalised). A second study by Triplett analysed advance directives of dementia patients (79); 84% preferred community discharge from the nursing home. In the third study, by Arling et al, reports on the preferences of nursing home residents with mixed diagnoses were analysed from a minimum data set (80); just 2.5% preferred hospice care, although this relates only to those with advance directives, and what was specified in those directives. The study by Anderson (78) was rated of low quality, the other two of moderate quality.


52

Table 3. Included papers which report preferred place of care as reported by proxies

Paper

Biola 2010

Country

England

Design

crosssection al

Data collection

after-death interviews

Study setting or context

27 nursing homes and 85 residential care/assis ted living settings

Participants

both family and staff caregivers

Target age group

not specified

Mean age, yrs (SD) (or proportion s if mean not provided)

decedents 86.6 (9.9)

Disease group

not reported

TOTAL PARTICIPANTS

N

Preferences for place of care

654 (caregivers) 327 LTC residents

Hospitalisation 31.7% No hospitalisation 45.0% Decision depending on situation 23.2%

Quality score

44%

Factors

17 factors (resident, family caregiver, facility) regarding hospitalisation assessed, none associated with decision about hospitalisation; no specific information given on type of analyses

327


53

Table 4. Included papers which report preferred place of care reported by chart reviews and secondary analysis Paper

Ander son 2006

Arling 2010

Triplett 2008

Country

Design

Data collection


Participants

USA

retrospective cohort study

chart review

USA


secondary data from minimum data set

nursing home

nursing home residents

USA

chart review

chart review

nursing home

end-stage dementia

nursing home

ESRD on CAPD

Target age group

Mean age, yrs (SD) (or proportions if mean not provided)

Disease group

N

62.7 (12.8) on admission to NH

ESRD patients on CAPD 100%

not specified

77.3 (12.7)

Cancer 14% Dementia 16% Depression 24% Diabetes 26% End stage disease 3%

not specified

81.5 (7.1)

Dementia 100%

not specified

109

24,648

123

TOTAL PARTICIPANTS:

Preferences for place of care

Quality score

NH 13% (not to be hospitalised)

31%

preference for community discharge (meaning back to home or supported living) 84%

63%

Hospice 2.5%

56%

Factors

4 factors for declining hospitalisation (multivariate analysis): poorer ADL scores (4.3, SD 3.7 v 8.8, SD 4.3) older age (69.0, SD 13.8 v 61.6, SD 12.5) more likely to have dementia (6/14 v 26/94)) less likely to have amputations (0/14 v 26/94)

24,880

Abbreviations: ESRD = end-stage renal disease, CAPD = continuous ambulatory peritoneal dialysis


54


6.3 Preferences for place of care and factors influencing this The study published in two papers reporting preferences for place of care from the patient perspective (see Figure 8) indicated that 46% chose home as the preferred place of care and 54% preferred hospital (75, 76).

Table 5. Conventions used in the ‘bubble’ plots 

X axis represents each option for place of care



Y axis represents the proportion with preference for that place of care



The size of the ‘bubble’ represent the size of the study from which this evidence is drawn



The colour of the bubble is consistent across plots for place of care; for instance light blue represents a home preference, and red a hospital preference

Figure 8. Preferred place of care as reported by patients themselves


52

This study also identified six factors associated with preference for home treatment (see Table 6). White race, higher education, better financial situation, living with spouse, deep religiosity, and higher activities of daily living (ADL) dependencies increased patients’ preference for home treatment. However, this was only confirmed in uni-variate and not multivariate analysis, and constitutes weak evidence. Table 6 groups these factors according to the proposed theoretical model for factors influencing place of care and death in non malignant conditions (see ‘Type of factor in Table 6, and also the theoretical model in Figure 2 on page 28). In the second study, 30% of patients were enrolled in hospice care over a time period of 24 months (74). 20 factors associated with preference for hospice enrolment were assessed. Concern about being kept alive by machines, low-burden treatment that would increase chance of survival, impairment of ADL and IADL, and number of moderate/severe symptoms were all significantly associated with hospice enrolment (see Table 7).

In the study that used proxy data to report preferences, family and staff caregivers reported that about a third of decedents made a decision that they want to be hospitalised if indicated and 45% that they didn’t want to be hospitalised (77). About 23% wanted to decide depending on the situation. In studies relying on medical records to report preferences, 13% of patients with end stage renal disease and peritoneal dialysis in a nursing home © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

56

chose not to be hospitalised (78) and 2.5% of nursing home residents with dementia (who had made advance directives) chose hospice as their preference for care (79).


57


Table 6. Evidence on factors associated with preference for home treatment as reported by patients Type of factor

Factor

Strength of evidence *

Consistency

Personal and demographic factors

Ethnicity: White

Low

(1/1)

Financial situation: money left over at end of month

Low

(1/1)

Direction

Preference for home treatment ▲ Preference for home treatment ▲ Preference for home treatment ▲

Education: any College education or more

Low

(1/1)

Religiosity: deeply religious

Low

(1/1)

Environmental factors – social support

Living situation: lives with spouse

Low

(1/1)

Preference for home treatment ▲

Symptoms/ illness burden/ trajectory

ADL impairment: ≥ 2 ADL dependencies

Low

(1/1)




54

* using Figure 6: Algorithm to assess strength of evidence (15)


59


Table 7. Evidence on factors associated with preference for hospice enrolment as reported by patients


55

Type of factor

Factor

Strength of Consistency evidence

Direction


Age

Low

(1/1)

No significant effect

Gender: male

Low

(1/1)


Ethnicity: white

Low

(1/1)


Education: years

Low

(1/1)


Co-morbidity

Low

(1/1)


Concerned about being kept alive by machines

Low

(1/1)

▲ hospice enrolment

Informed by physician that likely to die of illness

Low

(1/1)


Advance directive

Low

(1/1)


Prefers to avoid dying in a hospital

Low

(1/1)


Preferences for life-sustaining treatment

Low

(1/1)


Low-burden treatment that would increase chance of survival

Low

(1/1)


High-burden treatment that would increase chance of survival

Low

(1/1)



Informal caregivers present in the home

Low

(1/1)


Environmental factors – health and social care input

Care from a VA Medical Center

Low

(1/1)


Knowledge of hospice as an option for care

Low

(1/1)


Environmental factors – macrosocial factors

Financial situation at end of month

low

(1/1)



ADL impairment

Low

(1/1)


IADL impairment

Low

(1/1)


Global quality of life

Low

(1/1)


Number of moderate/severe symptoms

Low

(1/1)


Disease-related factors

Note: in the US context that ‘hospice enrolment’ means enrolment onto a program which provides the kind of care provided under the Medicaid/Medicare hospice benefit. See page 126 for further discussion of the differences between countries in this respect.


61

7 Results: preferences for place of death 7.1 Evidence identified Seventeen included studies reported preferences for place of death, and factors influencing these preferences. In total, this represents the preferences of 9,495 participants, across eight countries. Studies which use data derived direct from patients themselves included 1,639 patients, while reports from families represent a further 1,350 participants and reports from professionals another 5,929 participants. Two additional studies represented a further 577 patients using medical records and databases to identify reported preferences. Again, because of the established differences between patient and proxy perspectives, and the marked limitations in using records to capture preferences, we present the evidence on preferences for place of death according to the data sources used: either i) data derived directly from patients themselves, ii) data derived from proxy sources (families or professionals), and iii) data derived from medical records.

7.2 Study characteristics and quality of the evidence i) Data from patients themselves on preferred place of death The seven studies describing preferences for place of death in non-cancer conditions reported by patients come from the following countries: USA (3 studies), Canada (2 studies), Spain and Saudi Arabia (1 study each). Full details are presented in Table 8 overleaf. Most studies had a cross-sectional design, although two studies differed: five studies reported cross-sectional data (73, 81-84), one was a prospective cohort study (74), and one study tested an intervention in a randomised controlled trial (85). The populations and settings also varied. In five studies, participants had a mix of different diagnoses, mainly COPD, CHF and cancer ( 64

79 (8.7)

decompensate d heart failure 100%

≥ 65

75.6 (6.8)


246

Home 43.1% Hospital 48.0% Do not know 8.9%

> 18

median 72 (range 54–95)

Cancer 40.5% CHF 31.2% COPD 22.5% Cirrhosis 5.8%

138

Home 53.6% Hospital 27.5% Other 18.8%

TOTAL PARTICIPANTS:

1639


66


ii) Data about preferences for place of death as reported by proxies Four studies on preferences reported by families were identified, and come from USA (3 studies) and Spain (1 study) (see Table 9 for details). Two of these report cross-sectional data (88, 89) and two are retrospective cohort studies (90, 91). All studies were post-bereavement studies; none included family carers of living patients. Two studies included relatives of mixed populations (89, 90), one study the relatives of renal patients (88) and one did not report the diagnoses of the deceased (91). In three studies (89-91), family caregivers were interviewed, of which one study also used data from death certificates (89). One study used postal questionnaires to receive relatives’ views on patients’ preferences (88). The quality scores for these studies were variable; one study scored very low with 25%, while other studies attained moderate scores of 50%, 56% and 63%. Families reported prevalence of preference for home death which varied from 25-97%, which represents the reported preferences of 1264 participants. Mean weighted prevalence7 of home death preference, as reported by families, was 65.5%. The four studies on preferences for place of death in non-cancer conditions reported by professionals come from Belgium (2 studies), the Netherlands and Japan (1 study each). Details are presented in Table 10. Three studies are retrospective cohort studies (92-94) and one is a cross-sectional study (95). They present data from mixed patient populations (92-94) and again, one study did not report any diagnoses (95). Three studies report data from the Sentinel Networks of General Practitioners in Belgium (93, 94) and the Netherlands (92). One study is distinct in reporting data collected from nursing homes about the last five discharged residents who died (95). The design of studies varied; three were mortality-follow back studies using structured standardized questionnaires about registered non-sudden and expected deaths in GP practices (92-94) and one collected data from nursing homes (95). Study quality ranked between 56% and 69% with two studies scoring 63%. Professionals report a prevalence of patient preferences for home death which varies from 30-69%, which represents the preferences of 5929 participants. Mean weighted prevalence8 of home death preference from these studies is 47.8%.

7

Weighted by size of study.

8

Weighted by size of study.


60

iii) Data about preferences for place of death as derived from medical records Just two studies used records to obtain information about preferences for place of death. Both were retrospective cohort studies based in the US, and one retrieved data from medical records (86) while the other used a medical database (87). They report a prevalence of home death preference for 68% and 81.6% respectively; from the records of 577 patients. Weighted mean prevalence of home death preference is 79.3%.


68


Table 9. Included papers which report preferences for place of death as reported by families

Paper

Cohen 2005

Curtis 2002

Country

USA

USA

Design

crosssectional


Data collection


Participant s

postal questionaires

nephrology clinics

Families of patients who died after receiving dialysis*

interviews for questionaire validation

communitybased research and community engagement organization whose mission is to improve quality at life’s end

family members of patients who died

Target age group

all ages

all ages

Mean age, yrs (SD) (proportions if mean not provided)

Disease group

not mentioned

End stage renal disease

74.9 (15.52)

Cancer ≈26.6% COPD ≈6% Heart disease ≈28.6% Dementia ≈7% cerebrovascular disease 7.5% kidney disease 4% pneumonia 2.8% neurologic 2.8% chronic liver disease 3% other 27%

N

86

205

Preference s for place of death

35.3% died in preferred place of death, 37.6% did not die in preferred place of death

Home ≈25.3%

Quality score

Comments

25%

*spouse 49.4%, adult child 17.6%, sibling 9.4%

50%

validation study of the QODD tool; diagnoses given for 252 decedents but demographics for 205 as further information on them


62

Paper

Country

Ramon 2006

Spain

Tolle 2000

USA

Design


crosssectional

Data collection


Participant s

Target age group


interviews

6 areas in Catalonia/Spain

caregivers

≥ 65

> 18

death certificates and telephone interview

2-5 months after decedents death

family respondents

Disease group

N

81.4 (8) deceased

not reported

584

Family respondents 60 y Decedents 77 y

Cancer 24% Heart disease 23% Cerebrovascular 11% Pneumonia/influenza 6% COPD, Alzheimer etc. 36%

TOTAL PARTICIPANTS:

475

Preference s for place of death

Home 97.3% other2.7%

Home 43.7% Hospital 14% NH 19.7%

Quality score

Comments

63%

56%

1,350


70

Table 10. Paper

Abarshi 2009

Meeussen 2009

ShinodaTagawa 2005

Included papers which report preferences for place of death as reported by professionals

Country

NL

Belgium

Japan

Design



crosssectional

Data collection

mortality follow-back study with structured, standardized questionnaires for each death case mortality follow-back study with structured, standardized questionnaires for each death case

questionnaire


Dutch Sentinel Network of GPs

Participants

Target age group

Mean age, yrs (SD) (proportio ns if mean not provided)

GPs asked to fill in short form on the care the deceased received in the last 3 months of life



> 1> 80 years: y53%, e41-80 ayears 44% r

Belgian Sentinel Network of GPs

GPs; deceased patients

2,000/4,886 randomly selected NH; licensed nurses collected data for the last five recently discharged residents who had died

nurses reporting about NH residents

Disease group

43% cancer 29% cardiovascular

N

637

≥1y

1-64 y: 12.5%; 65-79 y: 34.6; ≥ 85y: 53%

Cancer 45.8% ‘Non-cancer’ 54.2%

798

not specifi ed

not reported

not reported

4175

Preferences for place of death

Home 69% Hospital 2% Hospice 10% Care home 19%

Home 57.6% Hospital 4.7% NH 30.9% Pall Care Unit 6.6%

NH 44.1%

Quality score

Comments

56%

Factors associated with GPs awareness of place of death; logistic regression

63%

study examines factors associated with GPs awareness of patients preferred place of death; information on preferred place of death from 363 patients; only paper with multivariate analysis

63%


71

Paper

Van den Block 2007

Country

Belgium

Design


Data collection

mortality follow-back study with structured, standardized questionnaires for each death case


Belgian Sentinel Network of GPs, all registered non-sudden or expected deaths in GP practice

Participants

GPs; deceased patients

Target age group

≥1y

Mean age, yrs (SD) (proportio ns if mean not provided) 1-64y 13%, 6574 y 23%, 75-84y 34%, +85y 29%

Disease group

N

Cancer 39% Cardiovascular disease 26% Not specified 30%

319

TOTAL PARTICIPANTS:


Home 30.1% Hospital 5.3% NH 11.6%

Quality score

Comments

69%

5,929


72


Table 11. Paper

GrothJuncker 1983

Pritchard 1998

Included papers which report preferences for place of death as reported from records Country

USA

USA

Design



Data collection


Participants

Age grou p

medical records

comparison of home and institutional deaths

elderly home-bound patients

all ages

Pts enrolled in observational phase of SUPPORT, who survived initial hospitalization & subsequently died during 6 month follow up period

administrative database

patients enrolled in observational phase of SUPPORT

≥ 65 y

Mean age, yrs (SD) (proportion s if mean not provided)

Disease group

N


Quality score

not reported

Cancer 41% ‘Non-cancer’ 57%

98

Home 68%

50%

not reported

not reported

479

Home 81.6% Hospital 19.4%

50%

TOTAL PARTICIPANTS

Comments

577


66

7.3 Preferences for place of death and factors associated with this One of the main areas of interest for this review was comparison between different non malignant conditions. For this reason, we present findings for preference for place of death by disease group. We go on to describe factors associated with preference for place of death. Table 12.

Conventions used in the ‘bubble’ plots

 X axis represents each option for place of care  Y axis represents the proportion with preference for that place of care  The size of the ‘bubble’ represent the size of the study from which this evidence is drawn.  The colour of the bubble is consistent across plots for place of care; for instance light blue represents a home preference, and red a hospital preference

There was heterogeneity with regard to options offered when studying preferences for place of death. In studies reporting preferences from patients, options were mainly home, and sometimes also hospital. One Canadian study also named hospice as a preference option (82) and one study named ‘other’ as a category without further specification (84). The only intervention study did not state the specific place but showed that patients in the intervention group died more often within the preferred place of death (85). However, this difference was not significant probably because the numbers who actually died in the preferred place were small.

Preferences in patients with renal disease: (see Figure 9). In AlJahdali’s study, patients on haemodialysis were asked in different scenarios about their preferences on care at the end of life (81). In the case of deterioration to impending death, 73% preferred to die at home. This number increased to 84% if patients were receiving medication at home and to 87% if they also were followed up at home.

Asked if hospitalisation and medical intervention would not improve their condition, 77% would choose home as preferred place of death. However, 70% answered in the same question that they would prefer to be transferred to hospital. In the second study with patients with a range of end stage renal disease, home was the first choice in 36.1%, and hospital © Queen’s Printer and Controller of HMSO 2011. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

67

and hospice were similarly distributed around 27-28% (82). Using this evidence, the weighted mean prevalence of home death preference among ESKD patients is 41.8%.

Figure 9.

Preferred place of death as reported by renal patients


75

Figure 10.

Preferred place of death as reported by patients with CHF

Preferences in patients with chronic heart failure: (see Figure 10) Only one study included patients with heart failure. In this study, 50% chose home and 40% chose hospital as the preferred place of death (83).

Preferences in patients with mixed non malignant conditions: (see Figure 11). Five studies reported views of patients from mixed patients groups (73, 74, 84-86) and one study did not report any specific disease but stated that data were from patients from the SUPPORT study (87). Home was the preferred place of death in about 70% of patients in a prospective study with cancer, COPD and CHF patients (74) and also in a retrospective study in elderly patients with cancer and non-cancer diagnoses (86). It should be noted that both studies did not give any alternative locations for preferred place of death. In one further study with mixed patient groups, home was the top preferred place of death in 43% (73). Patients were interviewed two months after discharge from hospital. In a study with patients interviewed during their hospital stay 53% chose © Queen’s Printer and Controller of HMSO 2011. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

69

home as the preferred place of death (84). This study also named a category ‘place of death does not matter’ as third option, with almost 20% of patients stating this. The fifth study reporting preferences from patients with mixed diagnoses did not state were patients preferred to die but only whether they died in their preferred location (85). Finally, in the study presenting data from the SUPPORT study without specifying diseases, about 80% of patients chose home as preferred place of death and the remaining 20% chose hospital (87). Figure 11.

Preferred place of death as reported by patients (mixed diagnoses)

Preferences for place of death as reported by families The only study reporting views of families of patients who died from renal disease only described that about a third of patients died in the preferred place of death and about 38% did not die in preferred place of death (88). However, place of death was not specified therefore we could not include it in the synthesis of findings. Families of deceased patients with a variety of non-malignant diagnoses reported that patients wanted to die at home in 25 – 44% (89, 90). In a retrospective cohort study from Spain, caregivers reported that 97% of patients wanted to die at home (91). This study did not give any details of patients’ diagnoses, but deceased patients were elderly with an average age of 81 years.


77

Figure 12.

Preferred place of death as reported by families (mixed diagnoses)

Preferences for place of death as reported by professionals (see Figure 13) The data coming from general practitioners in Belgium and Netherlands indicated home as preferred place of death in between 30 69% of patients, hospital as preferred place in 2 – 5 % of patients, and nursing/care home as preferences for place of death in 12 – 31% patients. In the Japanese paper only nursing home was named as preferred place of death, in 44% of patients.


78

Figure 13.

Preferred place of death as reported by professionals (mixed diagnoses)

Factors influencing preferences for place of death The main interest of this review is factors influencing place of death and also preferences for place of death. None of the identified studies described above reported any factors that influenced patients’ preferences. The nearest to this question were data from two studies which evaluated factors that were associated with general practitioners awareness for patients’ preferences for place of death (92, 93). Both papers reported data from general practitioner (GP) sentinel networks in Belgium and The Netherlands. These sentinel networks are pre-existing nationwide health surveillance instruments (92). In both countries, participating GPs were asked to fill in a short registration form within one week of reporting a patient’s death on the care the deceased received in the last three months of life (92, 93). This included questions about patients’ preferences for place of death. Neither paper stated the location of patients` preferences, such as home or hospital but focussed on factors affecting knowledge of the preferences (whatever it was). The two © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

79

papers reported ten different factors associated with GPs awareness of patients’ preferences (see Table 13). There was low strength evidence that all ten factors were associated with GPs awareness of patients’ preferences. The factors are grouped in relation to patients’ characteristics (financial status), to goal of care/treatment domain, place of care, and service provision/ use (informal care, GP contact, specialist palliative care support), following the theoretical model (see Figure 2). Table 13.

Evidence on factors associated with GPs awareness of patients’ preferred place of death

Type of factor

Factor


Overall treatment goal (reference Low curative) life prolonging Palliative Low Main care domain (reference physical) Psychosocial Spiritual

Environmental factors – Location of care social support other than home

Strength evidence

of Consistency

(1/1) ▲ GP awareness for preferred place of death ▲ GP awareness for preferred place of death (1/1)

▲ GP awareness for preferred place of death ▲ GP awareness for preferred place of death

Low

(1/1)

place of care 7 days before death Low (reference hospital) home care home hospice

(1/1)

some/often informal care over last 3 months Low

Direction

▼ GP awareness for preferred place of death

▲ GP awareness for preferred place of death ▲ GP awareness for preferred place of death ▲ GP awareness for preferred place of death (1/1)

▲ GP awareness for preferred place of death

Environmental factors – Not hospitalised in last 3 months of life Low health and social care input >7 GP contacts over last 3 months of life Low No use of specialized palliative care services Low Specialist palliative care initiative delivered over last 3 months of life

(1/1)


(1/1)


(1/1)

▼ GP awareness for preferred place of death

Low

(1/1)


Low

(1/1)

Environmental factors – Financial status macrosocial factors Average Above average

▲ GP awareness for preferred place of death ▲ GP awareness for preferred place of death


80

8 Results: evidence on place of death 8.1 Identified evidence Of the 287 included papers, 110 papers reported quantitative evidence on place of death. Of these 110, there were 35 papers (representing 34 studies) which undertook multivariate analysis on factors affecting place of death (52, 91, 95-127) and we have focused our review on these papers which undertake this more rigorous multi-variate analysis. Table 14 provides full details of these studies. These studies of place of death in non malignant conditions come from the following countries: USA (17 studies) , Japan (6 studies), Canada (3 studies), Australia (2 studies), Belgium (2 studies), the Netherlands (2 studies), England (1 study), Scotland (1 study), Wales (1 study), Singapore (1 study), China (1 study), and Spain (1 study). One study undertook a cross-country comparison between five countries (33). Together, these studies reviewed over 6 million participants (specifically, 6,296,516 people, excluding the two ecological studies).

8.2 Quality of evidence Since we analysed only studies which conducted multi-variate analyses, all studies were either medium or high quality - 27 studies were high quality, and 8 were of medium quality (see Figure 4 for details of how the quality scores were derived). No study scored less than 50%, apart from one of the ecological studies, for whom the generic quality score was not well suited.


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Table 14.

Included papers reporting multivariate analyses on factors affecting place of death

Paper

Country

Design

Data collection


Participants

Target age group

Disease group

N

No of factors

Type of analysis

Quality score

all ages

Mean age, yrs (SD) (or proportions if mean not provided) 63.1 (8.9)

Afessa 2002

USA

prospective cohort study

acute hospital

COPD patients with ICU admission

Ai-Ping 2005

Singapore


hospital admissions and outcome data medical records

COPD

180

4

logistic regressi on

79% high

acute hospital

COPD patients with ICU admission whole regional population

all ages

70.0 (8.3)

COPD

57

6

79% high

70+

not given

455

7

regional

Japanese American men

all ages

84.4

1,352

7

logistic regressi on

64% med

death registration data

regional

whole regional population

all ages

85 - ▲ home death

Gender

Moderate

55%

(5/9)


Moderate Low Low

66%

(2/3) (1/1) (1/1)

Black - ▼home death White - ▲home death Latino - ▲home death

Marital status

Moderate

66%

(4/6)

Married - ▲home death

Education

Moderate

66%

(2/3)

Further education - ▲home death

Diagnosis**: CHF*** heart/circulaty disease***

Moderate High

100% 75%

(2/2) (3/4)

CHF compared to other – no significant effect Heart/circulatory disease compared to other – ▲ home death

High Low

100%

(3/3) (1/1)

COPD compared to other - ▲ home death COPD compared to cancer - ▼home death

Dementia

High

75%

(3/4)

Dementia compared to other/no dementia - ▲ home death

ESKD*****

Low

(1/1)

ESKD compared to cancer - ▼home death

Stroke******

Moderate Low Low

66% 50% 50%

(2/3) (1/2) (1/2)

Stroke compared to other - no significant effect Stroke compared to cancer - ▼home death Stroke compared to cancer - ▲home death

Co-morbidity

High

100%

(3/3*)

Co-morbidity - ▼home death


Living alone

Moderate

66%

(2/3)

Living alone - ▼home death

No informal carer

Low

(1/1)



Hospital bed availability

High

(4/4)

Increased hospital bed availability - ▼home death

Ethnicity: Black White Latino


COPD****

-

-

-

-

100%


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Environmental factors macrosocial factors

Household or area income

Moderate

100%

(2/2)

Increased income - ▲home death

ADL impairment

High

100%

(3/3)

No significant effect (severe ADL impairment may be associated with▲home death – see text)

Cognitive impairment

Low

50% 50%

(1/2) (1/2)

Severe impairment - ▲home death Some impairment – no effect

Expected death

Low

(1/1)

Expected death - ▲home death

Trajectory of illness

Low

–


-

Not comparable since different aspects of trajectory assessed (2/2)

Illness < 1 day - ▲home death Illness 1-28 days - ▼home death Decline over 5 months - ▲home death

*One study (Motiwala, 2006) relates to home death with home care ** Diagnosis only considered as a factor when reference group was either ‘other diseases’ or ‘cancer’ ** Some studies define CHF specifically and others only report heart/circulatory disease (including cardiovascular disease) ****One study reported ‘chronic lung disease’ rather than COPD specifically *****Includes genitourinary disease as well as renal disease ******Two studies define cerebrovascular disease, rather than stroke alone


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9.2 Personal and demographic factors A more detailed breakdown of the evidence on factors affecting place of death elucidates this complex evidence more fully. There was evidence in relation to the personal and demographic factors of age, gender, ethnicity, marital status and education. Table 16 describes the conventions adopted for the subsequent graphs for each factor.

Table 16.

Conventions used in the graphs

 X axis represents the value of the odds ratio; increased odds to right  Y axis represents each study  Where possible, a standard size of X axis is used (from 0.0 – 5.0) – odds ratios above 5.0 are documented on the graph  The colour of the marker for each odds ratio represents study quality (red = high quality, yellow = medium quality)  95% confidence intervals are plotted where available

 Where feasible, odds ratios have been recalculated in line with the most common approach adopted by the included studies reporting that factor, in order to increase comparability between studies; for instance, most studies report the odds ratio of the factor ‘female’ with reference to male. But a few report the odds ratios for ‘male’ reference female - these have been inverted to aid comparison.


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Figure 14.

Association of age with home death

Seven studies report the relationship between age and home death (see Figure 14), and all are high quality (Table 14). Four of these studies reported findings which reach significance at the 95% level (27, 45, 48, 55) (52, 117) (119, 126). Five of the seven studies treat age as a continuous variable, but two (125, 126) categorise into either three or four groups to understand the association of older age, beyond 65 years. There is a lack of consistency in the findings; in a Belgium study (52) older age is associated with reduced likelihood of home death, although the effect is small (OR 0.99). US (117) and Australian (119) studies show increased likelihood of home death with age, although again the effect is small (OR 1.03 and 1.04, respectively). Two further US studies (101, 128) show no significant association between age and home death. Considering age as a continuous variable, and across all groups, there is high strength evidence therefore, that age is not associated with home death in the general non-cancer population. However, the two remaining studies focus specifically on older age groups (125, 126). These studies have categorised age to compare those under 65, with those aged 65-74 years, those aged 75-84 years, and those above 85 years (or some combination of these categories). These two papers are consistent in suggesting that those > 85 are more likely to die at home (OR 1.39 and 3.53, respectively), although the strength of this evidence is weak.


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Figure 15.

Association of gender with home death

Nine studies report the relationship between gender and home death (see Figure 15), and again all are high quality (Table 15). Five of these studies reported findings which reach significance at the 95% level (52, 102, 119, 126, 128), but there is a lack of consistency in the findings. In some studies, for instance in Belgium (52), the US (128), and Japan (126) being female is associated with reduced likelihood of home death (OR 0.93, 0.89, and 0.93). However US (124) and Australian (119) studies show increased likelihood of home death in women, although again the effect is small (OR 1.4 and 1.23, respectively). Four further US studies (101, 117, 124, 125) shows no significant association between gender and home death. There is moderate strength evidence therefore, that gender is not associated with home death in the general non-cancer population.

Figure 16.

Association of ethnicity with home death


95

Evidence on ethnicity comes exclusively from the US, and should be interpreted in this context. Four studies report the relationship between ethnicity and home death (101, 117, 125, 128). All are high quality and all report results significant at the 95% level. There is moderate strength evidence that black ethnicity is associated with reduced likelihood of home death, and low strength evidence that white or Latino ethnicity is associated with increased likelihood of home death. Although findings in relation to a number of other ethnic groups are reported in the studies, interpretation of these additional findings in relation to other ethnic groups is difficult, because of variation in the reference groups used. Figure 17.

Association of marital status with home death

Six studies report the relationship between marital status and home death (Figure 17), and all are high quality except one (100) of medium quality (Table 14). All report significant results, although there is some inconsistency in the findings which may reflect variations in the reference groups used, as well as national variations. Two US studies (124, 125) indicate that being widowed or single rather than married increases likelihood of home death; but this is in relation to home rather than hospital deaths and excludes all nursing home deaths, which may well influence the reference group. Conversely, four other studies (100, 117, 119, 128) indicate that being married increases the likelihood of home death (OR between 1.05 – 1.62). There is moderate evidence therefore that being married (rather than single or widowed) is associated with increased likelihood of home death.


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Figure 18.

Association of further education with home death

Three studies report the relationship between home death and education beyond secondary or high school (52, 117, 125). All are high quality studies, and two (which categorise education into higher or no higher education, rather than each additional year of education) report significant associations between having higher education and dying at home (52, 125). This constitutes moderate evidence that higher education is associated with home death.

9.3 Disease-related factors We have specifically assessed place of death in relation to six conditions (see below). However, not all studies categorised diagnosis or cause of death in the same way as adopted in this review. We have therefore mapped the categories as closely as possible to the six main conditions considered in this review:

     

Chronic Heart Failure (CHF) Chronic Obstructive Pulmonary Disease (COPD) Dementia Stroke End-stage Chronic Kidney Disease (ESKD) Long-term Neurological Conditions (LTNC)

We specify any variation in the definitions both on the graphs and in the text, and will reflect on the impact of this approach in the discussion. Studies used a wide variety of reference groups – to achieve some level of comparability, we report diagnostic categories which were related to cancer and other conditions in general, rather than specific alternative diagnoses. © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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Figure 19.

Association of CHF with home death

For CHF, the evidence is contradictory. Six high quality studies reported findings on this (101, 102, 117, 125, 126, 128), although only two had a specific category for CHF. Of these, both indicate no association between CHF and home death. The remaining four studies indicate that heart or circulatory disease in general is associated with home death, and this may represent in the inclusion of ischaemic heart disease (and consequent sudden death at home) in this category. All studies are from US, with the single exception of one from Japan (126). Figure 20.

Association of COPD with home death

The evidence on COPD is more consistent. Four high quality studies from the US report on this (101, 102, 125, 128), and three specifically classify © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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COPD. They are consistent in reporting that COPD is associated with home death, with the exception of one study which compares COPD with cancer, rather than other conditions (125). There is strong evidence therefore that people with COPD are more likely to die at home in comparison to other diseases, but there is weak evidence that those with COPD are less likely to die at home when they are specifically compared to those who die from cancer. Figure 21.

Association of dementia with home death

Four studies report the association of dementia with home death (101, 102, 116, 119) – all are high quality studies, and three are consistent in demonstrating the association of dementia with home death. The fourth approaches significance. The odds ratios across all three studies which are statistically significant at the 95% level indicate that home death is between 1.51 – 2.28 times more likely among those with dementia, when compared with other conditions.


99

Figure 22.

Association of renal disease with home death

Only one study reports the association between deaths from renal disease and home death (128), and this includes genitourinary disease along with renal disease; this provides weak evidence that those with renal disease are less likely to have a home death. Figure 23.

Association of stroke with home death

Five studies report on the association between stroke and home death (101, 102, 125, 126, 128), although there is variation in how stroke is classified – sometimes including the wider category of cerebrovascular disease. Taking studies which compare stroke to other conditions, the evidence is inconsistent with two studies demonstrating no significant effect and one demonstrating reduced likelihood of home death. Two further studies, comparing stroke to cancer, are inconsistent.


100

Figure 24.

Association of co-morbidity with home death

Three studies review the association of co-morbidity with home death (116, 117, 119). Together, these provide consistent and high evidence that increased co-morbidity is associated with lower odds of home death.

9.4 Environmental factors - social support Figure 25.

Association of no informal carer/living alone with home death

Four studies consider social factors such as availability of informal carers and living alone (52, 102, 117, 125). These provide moderate evidence that living alone or without an informal carer is associated with reduced chance of home death. There is some inconsistency in home these are defined within studies, and the reference groups used, which may account for the low level of consistency. © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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9.5 Environmental factors – health and social care input Figure 26.

Association of hospital bed availability with home death

When considering environmental factors such as health and social care input, we found strong evidence that increased hospital bed availability was associated with reduced likelihood of home death; this was identified in four studies (52, 116, 117, 128). This was very consistent and identified in three different countries - USA, Canada and Belgium – with markedly different health systems.

9.6 Environmental factors – macrosocial factors Figure 27.

Association of income with home death


102

Few studies considered macrosocial factors, such as national or regional policies, health or social systems and strategies. However, two studies did consider the relationship between income and home death (117, 128); both found significant evidence that higher income was associated with home death, though with small increase in odds ratios.

9.7 Symptoms, function, illness burden, and trajectory In our review of the theoretical model to underpin factors influencing place of death in non malignant conditions, we considered that aspects of non malignant conditions such as symptoms, function, illness burden and trajectory which might be very different from cancer (see the proposed theoretical model Figure 2). Some studies did provide some limited evidence on these factors (see Figure 28, Figure 29, Figure 30, Figure 31).

Figure 28.

Association of activity of daily living (ADL) impairment with home death

There was evidence that activities of daily living impairment was not associated with home death (see Figure 28), although one study did suggest that the most severely impaired levels of function were associated with home death (102) - in this study higher ADL scores equated to better function. Note that the study by Muramatsu reported no significance for number of ADL limitations, although actual 95% confidence intervals were not given.


103

Figure 29.

Association of cognitive impairment with home death

Only two studies addressed cognitive impairment (102, 117), and showed conflicting findings, which may reflect their differing approaches to categorisation (detailed in Figure 29).

Figure 30.

Association of ‘expected death’ with home death


104

Figure 31.

Association of trajectory of illness with home death

It may be that there is a more complex interaction between trajectory of functional decline, physical symptoms, cognitive impairment and trajectory, which is not easily captured, or indeed much measured, in relation to place of death. The two studies which address whether death is ‘expected’ or not, and the trajectory of illness (117, 125) show a rather complex picture; illness between 1 and 30 days duration is associated with reduced chance of home death, while very short illness (< 1 day) and more prolonged decline over 5 months (called ‘rapid’) are associated with increased chance of home death.


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10 Results: factors associated with hospital death Most of the evidence relates to the general advanced non-cancer population, although there was a small amount of evidence specific to the COPD population. We address the general population first, and will discuss the COPD-specific evidence later.

10.1 Factors operating in the general non-cancer population In the general non-cancer population, we found evidence for 25 factors associated with hospital death (see Table 17). Interpretation of this evidence was also complex. There was high strength and consistent evidence for only two factors associated with hospital death: marital status (single/divorced) and gender. Somewhat surprisingly, being single or widowed is associated with decreased likelihood of hospital death. Seven studies reported on the effects of gender, and of these six were high quality. Six studies found gender to have no effect on likelihood of hospital death, with one study showing men to be significantly more likely to die in hospital. Other factors require more detailed interpretation, and will be addressed in turn below.


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Table 17.

Evidence on factors associated with hospital death in the general non cancer population

Type of factor

Factor

Strength of evidence

Consistency

Direction


Age

Moderate

67%

(4/6)

Increasing age ▼hospital death

Gender

High

86%

(6/7)


Ethnicity: Moderate

100%

(3/3)

All non-white ethnic groups ▲hospital death

Marital status: Single Widowed Divorced Having a partner / spouse

High High Moderate Moderate

100% 100% 67% 100%

(3/3) (3/3) (2/3) (2/2)

Single - ▼hospital death Widowed - ▼hospital death Divorced - ▼hospital death No significant effect

Education

Moderate

50% 50%

(2/4) (2/4)

More education - ▼hospital death More education – no significant difference

Preference

Low

-

(1/1)

Strong preference for out of hospital death – no significant effect

Income

Low

-

(1/1)


CHF Heart/circulaty disease

Low Low

-

(1/1) (1/1)

CHF compared to cancer - ▲ hospital death Heart/circulatory disease compared to cancer – ▲ hospital death

COPD

Low Low

-

(1/1) (1/1)

COPD compared to other - ▲ hospital death COPD compared to cancer - ▲hospital death

Dementia

Low Low

-

(1/1) (1/1)

Alzheimers dementia compared to cancer - ▼hospital death Dementia compared to other - ▼hospital death compared to death in a LTC facility

Low

-

(1/1)

Dementia compared to other - ▲hospital death compared to death at home (with or without home care)

Nephritis

Low

-

(1/1)

Nephritis compared to cancer - ▲hospital death

Stroke

Non-white



Diagnosis:

Low

-

(1/1)

Stroke compared to cancer - ▲hospital death

Co-morbidity

Low

-

(1/1)

Increasing co-morbidity – ▲hospital death whether compared to home (with or without home care) or LTC facility

Living situation: Living alone Single or living in a couple

Low Low

-

(1/1) (1/1)

Living alone compared to other – no significant effect Single or living in a couple compared to living with other relatives - no significant effect Living in a residential home - ▼hospital death

Low

-

(1/1)

Low Low Low

-

(1/1) (1/1) (1/1)

Living in a residential home Home care situation: Formal care No formal or informal care Informal care

No significant effect No significant effect Informal care compared to both formal and informal care - ▲hospital death


100


Environmental factors macrosocial factors

Hospital bed availability

Moderate

67%

(2/3)

Increased hospital bed availability - ▲hospital death

Palliative care provision

Moderate

100%

(2/2)

Increased medicare hospice expenditure or increased hospice enrolees per 1000 ▼hospital death

Nursing home bed availability

Low Low Low

33% 33% 33%

(1/3) (1/3) (1/3)

Increased number nursing home beds per 1000 - ▲hospital death Increased number nursing home residents / 1000 - ▼hospital death Increased percentage residing in nursing homes – no significant effect

Primary care physician availability

Low Low

50% 50%

(1/2) (1/2)

Increased number primary care MDs per 100000 – no significant effect Increased percentage primary care physicians - ▲hospital death

Physician availability (not specified whether primary care or specialist) Specialist physician availability

Low

-

(1/1)

Increased number physicians per capita – no significant effect

-

(1/1)

Increased number specialist physicians per 100000 - ▲hospital death

Population age

Low

(1/2) (1/2)

Increasing population age - ▼hospital death Increasing population age – no significant effect

Population density

Low

-

(1/1)


Population ethnicity

Low

-

(1/1)

Increasing % black or Hispanic in population – ▲hospital death

Population education

Low

-

(1/1)

Increasing education - ▼hospital death

Population religious membership

Low

-

(1/1)

Increasing % with religious membership - ▼hospital death

Socioeconomics: % of families in poverty Income ratio Social deprivation % recent immigrants

Low Low Low Low

-

(1/1) (1/1) (1/1) (1/1)

Increasing Increasing Increasing Increasing

Cognitive decline

Low

-

(1/1)


Functional status

Moderate

(3/3)


Prognosis predictor

Low

-

(1/1)

Apache III score – no significant effect

Trajectory of illness

Low

-

(1/1)


Low

–


50% 50%

100%

% families in poverty - ▼hospital death income ratio - ▲hospital death social deprivation - ▲hospital death % recent immigrants - ▲hospital death


108

10.2 Figure 32.

Personal and demographic factors Association of age with hospital death

Six studies report the association of age with hospital death. Of these, five were of high quality (91, 98, 103, 104, 108) and one was of medium quality (87). Four of the six studies reported significant findings at the 95 % level, and indicate that increasing age is associated with decreased likelihood of hospital death (87, 98, 103, 104). The two studies which reported a nonsignificant association between age and likelihood of hospital death showed a similar trend. Figure 33.

Association of gender with hospital death

Seven studies reported the association between gender and hospital death. Of these, six were of high quality, and one was of medium quality. Six of © Queen’s Printer and Controller of HMSO 2011. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

102

seven showed no significant association between gender and likelihood of hospital death (87, 91, 98, 103, 108, 124). No confidence intervals were given for Wachterman, but the data are reported as non significant. One study (104) reported a significant effect, that male gender is associated with death in hospital, but the effect size was small (OR 1.07).

Figure 34.

Association of ethnicity with hospital death

Three studies from the USA reported on the association between ethnicity and death in hospital. All three studies show a significant association between non-white ethnicity and hospital death. In two of the studies (103, 104), several different ethnicities were compared to white. Strikingly, all ethnicities were significantly more likely to die in hospital than white. Although all three of the studies showed non-whites were significantly more likely to die in hospital, because one of the papers (87) is of medium quality, this is classed as a moderate association.


110

Figure 35.

Association of marital status with hospital death

Five studies reported on the association between marital status and hospital death. Three of these, all from the USA, compared being single, divorced or widowed with married. In all three studies being single or widowed was significantly associated with decreased likelihood of hospital death, providing high strength of evidence. For decedents who were divorced, Gruneir and Hansen found a significantly decreased likelihood of dying in hospital (103, 104), whereas Wachterman found a non-significant trend towards decreased likelihood of dying in hospital (no CI given, but data reported as non-significant) (124), therefore providing moderate strength of evidence that being divorced is associated with decreased likelihood of dying in hospital. Two studies reported on the association between the presence of a partner ((108), The Netherlands) or living spouse ((98), Japan) with hospital death. Both studies were of high quality and reported no significant association.


111

Figure 36.

Association of education with hospital death

Four studies reported on the association between education and hospital death. Two high quality studies, both from the USA, showed a significant association between increased education and lower likelihood of hospital death (103, 104). A further USA study (87), which was of medium quality, showed a similar trend although this was non-significant. Klinkenberg compared decedents who had lower vocational education with those who had less education in a high quality study (108). They found no significant difference, although the trend was towards greater education being associated with increased likelihood of hospital death. Taken together, these studies suggest that increased education is associated with decreased likelihood of hospital death, although the inconsistency of their conclusions and variation in the reference groups used, make it difficult to draw definitive conclusions. In addition, one study (104) compared hospital with both home and nursing home, in contrast to a direct comparison between just two settings (hospital and home) in other studies (103, 108).


112

Figure 37.

Association of preference for place of death with hospital death

In a medium quality study from the USA, Pritchard et al found that a strong preference for out of hospital death was not significantly associated with likelihood of dying in hospital (87). However, in this study, patients were asked about their hypothetical rather than actual preferences; the question was related to a possible rather than an actual situation. One study reported the association between personal income and likelihood of dying in hospital (87). This medium quality study found no significant association between income and hospital death. Note that the effect of population income on death in hospital is reported below. Figure 38.

Association of personal income with hospital death


113

10.3


As described above, we have sought evidence for the association of dying in hospital with the following disease categories:

     

Chronic Heart Failure (CHF) Chronic Obstructive Pulmonary Disease (COPD) Dementia Stroke End-stage Chronic Kidney Disease (ESKD) Long-term Neurological Conditions (LTNC)

Studies used a wide variety of reference groups – to achieve some level of comparability, we report diagnostic categories which were related to cancer and other conditions in general, rather than specific alternative diagnoses. Figure 39.

Association of CHF (including heart disease) with hospital death

A study from the USA reported on the association of heart disease with hospital death in the general non cancer population (103). In this study, both CHF and heart disease were associated with significantly higher likelihood of dying in hospital when compared to cancer (OR 1.56 and 2.32 respectively). This single study provides low strength evidence that heart disease is associated with increased likelihood of dying in hospital than cancer.


114

Figure 40.

Association of COPD with hospital death

Two high quality studies reported on the association between a diagnosis of COPD and likelihood of dying in hospital. Ramon et al found that a diagnosis of COPD was significantly associated with increased odds of death in hospital when compared to other diagnoses (OR 1.72) (91). Similarly, Gruneir et al found that a diagnosis of COPD was significantly associated with increased odds of dying in hospital when compared with diagnosis of cancer (OR 2.57) (103).

Figure 41.

Association of dementia with hospital death

Two North American studies reported on the association between diagnosis of dementia and death in hospital. Gruneir et al compared diagnosis of Alzheimers Disease with cancer, and showed that a diagnosis of Alzheimers disease is significantly associated with decreased likelihood of death in hospital compared with death at home, although the effect size was small (OR 0.93) (103). Motiwala et al compared diagnosis of dementia with ‘other’, and looked at the likelihood of dying in hospital compared to several other settings: long term care (LTC) facilities, home with home care, and © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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home without home care (116). They found that patients with dementia were significantly less likely to die in hospital than in a LTC facility (OR 0.35), but significantly more likely to die in hospital than at home, either with or without home care (ORs 1.36 and 2.14 respectively). Figure 42.

Association of renal disease with hospital death

One study reported the impact of renal disease on death in hospital. In this high quality study, a diagnosis of nephritis was significantly and strongly associated with increased likelihood of death in hospital compared to diagnosis of cancer (OR 5.42) (103). Figure 43.

Association of stroke (cerebrovascular disease) with hospital death

One study reported the association of death in hospital with a diagnosis of cerebrovascular disease. In this high quality study, diagnosis of cerebrovascular disease was significantly associated with increased odds of death in hospital compared to diagnosis of cancer, and the effect size was large (OR 5.45) (103).


116

Figure 44.

Association of comorbidity with hospital death

One study examined the association between co-morbidity and death in hospital compared to death in a long term care facility, death at home without home care, and death at home with home care. In this high quality study, increasing number of Charlson co-morbidities was significantly associated with increased likelihood of hospital death irrespective of the comparator setting (116). The effect size was strongest when compared to death at home without home care (OR 1.77).

10.4 Figure 45.

Environmental factors – social support Association of living situation with hospital death

Two studies reported on the effect of living situation on likelihood of hospital death. Pritchard et al found that living alone had no significant effect on odds of hospital death in a medium quality study from the USA (87). A © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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Japanese study from the same year found that decedents who were either single or living in a couple were more likely to die in hospital than those who were living with other family, although again this result was not significant at the 95 % level (98).

Figure 46.

Association of place of residence with hospital death

A Spanish study examined the effect of living in a residential home on likelihood of hospital death. In this high quality study, there was a significantly reduced chance of dying in hospital if the decedent lived in a residential home compared to any other place of residence (91).

Figure 47.

Association of carer situation with hospital death

One study from The Netherlands examined the influence of carer situation on likelihood of hospital death (108). This high quality study compared no formal or informal care, formal care alone, and informal care alone, to both formal and informal care. There was a significant association between decedents who received informal care only and increased likelihood of hospital death (OR 3.68) compared to those who received both formal and informal care. Receipt of formal care alone had a non-significant effect on © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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likelihood of dying at home. Somewhat surprisingly, decedents who received neither formal nor informal care did not have a significantly increased likelihood of dying in hospital.

10.5 input Figure 48.

Environmental factors – health and social care

Association of hospital bed availability with hospital death

Three North American studies examined the impact of hospital bed availability on death in hospital. Two of these showed a significant but modest increase in likelihood of hospital death with increasing hospital bed availability (104, 116), (ORs 1.15, 1.26 respectively). A third study showed no significant effect (OR 1.00)(103). Together these studies provide moderate strength evidence that increased hospital bed availability is associated with increased likelihood of hospital death.


119

Figure 49.

Association of health care provision with hospital death

Three studies reported the effect of nursing home beds / residents on likelihood of hospital death. Hansen et al found that an increasing proportion of nursing home residents in the population was significantly associated with a decreased likelihood of hospital death, although the effect size was small (OR 0.99) (104). Conversely, Gruneir et al found that an increasing number of nursing home beds was significantly associated with increased likelihood of hospital death, albeit with a similarly small effect size (OR 1.01) (103). Both studies demonstrate a small effect size in the context of a very large study size; this should be borne in mind when considering the apparent contradiction between these data. A third study which examined the impact of the proportion of nursing home residents on hospital death found no significant association (87). Two studies considered the effect of primary care physician availability on likelihood of hospital death. Hansen et al found a small but significant increase in the likelihood of hospital death with increasing percentage of primary care physicians (OR 1.02) (104), whilst Pritchard et al found no significant association between the number of primary care physicians per 100000 and likelihood of hospital death (87). In the same study (87) there was a significant positive association between the number of specialist physicians and likelihood of hospital death. Hansen et al reported no significant association between an increasing number of physicians per 100000 and death in hospital (OR 1.00), although it is unclear whether this statistic refers to primary care, specialist, or both) (104).


120

Figure 50.

Association of palliative care provision with hospital death

Two American studies reported the association between palliative care provision and likelihood of hospital death. Hansen et al found a small but significant decreased likelihood of hospital death with increasing numbers of hospice enrolees (OR 0.99) (104). Pritchard et al found a large significant decrease in the likelihood of hospital death with increasing Medicare hospice expenditure per beneficiary (87). Together, these studies provide low strength of evidence that increasing palliative care provision is associated with decreased likelihood of hospital death.

10.6 Figure 51.

Environmental factors – macrosocial factors Association of population age with hospital death

Two papers described the association of population age with hospital death. Hansen et al found a small but significant inverse relationship between the percentage of the population over 65 and likelihood of hospital death (OR 0.97) (104). Gruneir et al examined the same factors and found no significant effect on likelihood of hospital death (103).


121

Figure 52.

Association of population density with hospital death

Hansen et al examined the effect of population density on likelihood of hospital death (104). In this high quality study from the USA, there was no effect of population density on likelihood of dying in hospital (OR 1.00).

Figure 53.

Association of population ethnicity with hospital death

In addition to individual patient ethnicity (reported above), Hansen et al examined the effect of population ethnicity on odds of hospital death. They reported a significantly increased likelihood of hospital death in populations with greater percentages of both black and Hispanic ethnicities (104).


122

Figure 54.

Association of population education with hospital death

Gruneir examined the effect of population education on hospital death. They reported a small but significant increase in likelihood of hospital death in populations with greater percentages of adults without high school education (OR 1.03) (103).

Figure 55.

Association of population religious membership with hospital death

Hansen et al examined the effect of religious membership: they reported little effect of higher proportion of religious membership in the population on the likelihood of hospital death (OR 0.997).


123

Figure 56.

Association of socioeconomic factors with hospital death

Two North American studies reported on the impact of socioeconomic factors on likelihood of hospital death. Gruneir et al found that populations where the income ratio (average household income for top fifth of population / average household income for bottom fifth of population) was greater had significantly higher likelihood of dying in hospital (OR 1.09) (103). Motiwala et al found that populations with higher percentages of recent immigrants had a small but significant increase in the odds of hospital death (OR 1.02) (116). Similarly, greater social deprivation was associated with increased likelihood of dying in hospital than at home, either with or without home care. Conversely, Gruneir et al found that communities with greater percentages of families in poverty had a significant reduction in likelihood of hospital death, although the effect size was small (OR 0.98) (103).


124

10.7 Symptoms, function, illness burden, and trajectory Figure 57.

Association of cognitive impairment with hospital death

One study examined the influence of cognitive decline on likelihood of hospitalisation, and found no significant effect (108).

Figure 58.

Association of functional status with hospital death

Three studies examined the relationship between functional status and hospital death. All three studies showed a trend towards higher levels of disability being associated with reduced odds of dying in hospital, but none were significant at the 95 % level (87, 91, 108). Of the studies, two were of high quality and one was medium quality. Together, these studies provide moderate strength of evidence that poor functional status does not affect likelihood of death in hospital.


125

Figure 59.

Association of prognosis predictor with hospital death

Pritchard et al found no significant association between Apache III score (a prognostic score) and likelihood of hospital death (87).

Figure 60.

Association of illness trajectory with hospital death

Only one study investigated the relationship between duration of illness and death in hospital. Babazono et al found no significant effect of greater duration of illness on likelihood of death in hospital (98).


126

Figure 61.

Association of geographical region with hospital death

Four studies considered the effect of geographical location on hospital death (87, 91, 104, 108). All four studies showed significant effects, with Pritchard et al demonstrating a more than seven-fold difference in the likelihood of hospital death between study sites (87).

10.8

Factors specific to the COPD population

The only disease in which we identified evidence on hospital death specific to a disease population was COPD. Three studies undertook multi-variate analysis on this topic in COPD populations (96, 97, 111), although most relate to COPD patients with intensive care admission, respiratory failure, or needing intubation, so care needs to be taken in relating these to a wider community-based COPD population. We identified 10 factors related to hospital death for the COPD population. These are grouped by type of factor in Table 18.


127

Table 18.

Evidence on factors associated with hospital death in the COPD population

Type of factor

Factor

Strength of evidence

Consistency

Direction


Age

Low

-

(1/1)

Increasing age -▲hospital death


Albumin level

Low

-

(1/1)

Low albumin levels - ▲hospital death

Sepsis

Low

100%

(2/2)

Sepsis - no significant effect

Co-morbidity

Moderate

100%

(2/2)

Increased number of organ failures -▲hospital death Increased number of co-morbid conditions - no significant effect

Low

50%

(1/2) Previous intubation ▲ hospital death Low post intubation pH▲ hospital death

Previous intubation Post intubation PH level

Low Low

Medication (long term oral steroids)

Low

50%

(1/2) Long term steroids - no significant effect -

(1/1) Increased severity of illness (APACHE II) score ▲hospital death

Disease prognosis Moderate

66%

(2/3)

Trajectory

Increased hospital stay ▲hospital death Invasive mechanical ventilation - no significant effect

Low

-

(1/1)

Low

-

(1/1)

Ventilation


121

Figure 62.

Association of age with hospital death

One study from Singapore (97) examines the association between age and hospital death with particular reference to patients with acute respiratory failure attributable to COPD. It is high quality and shows a small but significant association of older age with increased chances of dying in a hospital setting for COPD patients (OR 1.3).

Figure 63.

Association of albumin level with hospital death

The relationship between serum albumin and hospital mortality was explored by one high quality study, which reports a significant association between higher albumin levels (hypoalbuminemia) and reduced likelihood of


122

hospital death (OR 0.8) (97); COPD patients with lower levels of albumin appear more likely to die in hospital (OR 1.25).

Figure 64.

Association of sepsis with hospital death

The association of sepsis with hospital death was analysed by two studies, one high quality (96) and based in the USA, and another medium quality from China (111). Both studies report a small and non-significant effect, which constitutes moderate evidence that there is no association between sepsis and hospital death in COPD patients.

Figure 65.

Association of comorbidity with hospital death

Two studies report an association of co-morbidity with hospital death in COPD patients (96, 111). Note the x-axis has been changed for this graph, from the ‘standard’ in other graphs. One North American study provides high quality evidence that the probability for hospital death increases more than five-fold for patients with a higher number of organ failures when compared to those with none (96). A similar observation in terms of the positive correlation between co-morbidities and increased chances of hospital death is made by another study, from China, which reports medium © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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quality evidence that patients with multi-organ dysfunction syndrome are six times more likely to die in hospital compared to those without the condition (111). The same study reports an inverse relationship between hospital death and co-morbidity, this time measured by the Charlson Comorbidity index, where each increase in unit of severity predicts lower probability of hospital death (111). However, this latter association is of relatively small effect (OR 0.5) and non-significant.

Figure 66.

Association of intubation with hospital death

Only one study, of high quality, investigates the association between previous intubation and hospital death for COPD patients (97). The research group found that a previous history of intubation was a predictor of higher probability for hospital death by a small, but significant effect (OR 1.3, p85 64.8% disease compared with other causes CVA patients 40+ discharged to various locations

70(12)

all diagnoses: 893 CVA 100%, cardiac disease 43%, cognitive impairment 21%, motor deficit 78%

No of Type of factors analysis

Quality score

logistic regression

75% high

logistic regression

86% high

5

logistic regression

86% high

4

logistic regression

71% high

10

logistic regression

86% high


187

Paper

Country

Salive. 1993 USA

Smith and USA Stevens. 2009 Smith. 2001 USA

Tsuchihashi Japan 2001

Design

Data collection

prospective longitudinal cohort study participant data derived from epidemiologic studies retrospective Medical and cohort study billing records

Study setting Participants or context

Target age group


Disease group

regional population dataset

Community dwelling older adults

65+

Not given

Regional

Patients 60+ Not given discharged from hospital (2006) Dementia patients 65+ 80(6.2) and matched cognitively unimpaired persons CHF patients All ages/non 69 (14) discharged from specified hospital

prospective longitudinal Region cohort study participant data from Dementia Patient registry prospective Medical records Regional cohort study hospitals

Wheelock. 2003

USA

retrospective Huntington cohort study Disease Patient database

International Largest population 68.8% from USA longitudinal regional participant data population from clinical dataset assessments

Williams. 2006

USA

prospective longitudinal study

Huntington Disease patients living in nursing facilities and in communities AD and LBD patients assessed for mortality and time to Nursing home

All ages/non 50 specified

All ages/non Not given specified

N


Quality score

all diagnoses: 4074 proportions not given

7

logistic regression

79% high

all diagnoses: 6006 proportions not given

11

logistic regression

79% high

Dementia 100%,

985

6

logistic regression

64% medium

all diagnoses: CHF 100%, Diabetes 25% Stroke 14% Renal failure 11% Hypertension 41% Huntington Disease

230

6

logistic regression

79% high

3070

3

logistic 57% regression medium **HR and CI alone

2

logistic 79% regression high **HR and CI alone

all diagnoses: 315 Alzheimer’s disease 80%, Lewy Body Dementia 20%


188

Paper

Country

Yaffe. 2002 USA

Design

Data collection

Study setting Participants or context

Randomised longitudinal regional control trial participant data population from Medicare dataset records and clinical consultations

Target age group


Dementia patients All ages/non 78.9(7.8) living in the specified community

Disease group

N


Quality score

Dementia

5788

5

85% high

logistic regression

TOTAL PARTICIPANTS:


189

This quantitative evidence should be interpreted in the context of the broader conception of transitions, as defined above (see Table 22), and also bearing in mind a patient-centred perspective on transitions. For instance, some patients (such as people severely affected by MS) experience loss and change which evolves throughout their illness, rather than at a specific transition point (150). Patients also report that they experience transition, not as a linear or clearly defined process, (137) but as a complex and rather iterative process (130).

14.1

Transition into hospital

Six studies report the relationship between age and transition into hospital (113, 183-187). Figure 110. Association between age and transition into hospital

Figure 110 illustrates the evidence on the association between age and transition into hospital from home (185, 187), and nursing home (113, 183, 184). One study assessed whether palliative care provision in a nursing home setting changed hospital admission (184), and a further study from Belgium (186) assessed hospital admission from all settings. Although there is no apparent relationship between age in general and hospital admission (184-187), two studies which compare the odds of hospital admission in younger residents as compared to older age residents, specifically among © Queen’s Printer and Controller of HMSO 2011. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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nursing home residents (113, 183) identify a significant difference; this is pronounced when comparison is made of those < 85 with those > 95 years (183).

Figure 111. Association between functional status and transition into hospital

Three studies report the relationship between functional status and hospital admission (113, 183, 188); one in relation to people with advanced disease recently discharged from hospital and their odds of re-admission (188) and two with respect to the re-admission of long term nursing home residents (113) (183). No significant associations were demonstrated, with the exception of one study (113) which showed association between good functional status (Level 1 care is independent or minimally dependent) and transition into hospital, when compared to likelihood of admission for those with poor functional status and high dependency (level 4 is maximal dependence) (see Figure 111).

14.2

Transition into nursing home

Six studies provide evidence on age and transition into nursing home care (189194). Care needs to be taken in interpreting these findings, since the studies relate to markedly different populations, ranging from a general population (192, 194), a general hospitalised population (190), an older hospitalised population © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

191

(193), and specific disease populations: work by Factor et al relates to with people with severe Parkinson’s disease and psychotic features for instance (189), and Ahmed’s study relates to hospitalised heart failure patients (191).

Figure 112. Association between age and transition into nursing home

There is inconsistency of findings, although in general, age as a continuous variable across all age groups has little association with nursing home admission, while categorisation of age to compare older categories (>65, by Ramdek et al, and > 75 by Lim) with younger ages tend to show a significant effect.

The association of dementia and transition into nursing home has been studied by several authors; we have grouped these studies with those papers which report cognitive impairment without specific diagnosis (see (see Figure 113 overleaf). This evidence relates to transition into nursing home from hospital (190, 193, 194) and from home (192, 195, 196).


192

Figure 113. Association between dementia or cognitive impairment and transition into nursing home

There is high grade evidence that, regardless of whether the transition is from hospital or home, dementia is strongly associated with nursing home admission, with odds ratios between 2.62 and 29.1. The evidence is similar for cognitive impairment, although only two studies report this, with wide confidence intervals (but still significance at the 95% level) (see Figure 113).


193

Figure 114. Association between pre-admission living situation and transition into nursing home

Three studies report association between living alone prior to admission to nursing home, and transition into nursing home care (190, 193, 196). These are consistent in demonstrating significant association between living alone and nursing home admission, although one study reports by ethnic group (196), with no significance for those of white ethnic background, in contrast to those of black ethnic background.


194

Figure 115. Association between length of hospital stay and transition from hospital into nursing home

Two out of three studies demonstrate an association between longer hospital stay and increased likelihood of nursing home admission (191, 194, 197). Again, these studies are consistent in demonstrating that longer hospital stay is associated with nursing home admission, and the size of the odds ratio in part may reflect whether length of stay has been treated as a continuous variable, with small increase in odds per extra day of stay (OR 1.21) (191), or categorised into longer versus shorter stays, and correspondingly larger odds ratios (OR 2.06-2.43) (194, 197).


195

Figure 116. Association between pre-admission social support and transition from hospital into nursing home

Four studies evaluate whether pre-admission social support is related to nursing home transition (192, 193, 195, 198). Three studies are consistent in demonstrating the association of a lack of caregiver at home with greater likelihood of nursing home admission, although with differences in the size of this association (OR varies from 1.3 – 8.3) (192, 195, 198). In the fourth study (193) there is no significant association; this study looked at older people in a specific geriatric hospital ward in Italy.

14.3

Transition back home

There is a limited amount of evidence on the transition back home from nursing home (80) (199), and from hospice (200). These studies provide evidence that age is not associated with increased likelihood of discharge home from these settings (see Figure 117 overleaf), since all have non-significant findings in relation to age for this transition.


196

Figure 117. Association between age and transition back to home

14.4

Transition to palliative care

There is limited evidence on transition into palliative care, with only five studies providing evidence on this (109, 197, 201, 202) (203). All these studies are from the US, and so relate to the US understanding of hospice; i.e. palliative care programmes which are largely, but not exclusively, community based – some have hospice in-patient beds, although this is often distinct from palliative care in a hospital setting. One study relates to palliative care provision in a hospital context, and the effect of this on discharge to hospice programmes (197). One further study also relates specifically to the ESKD population (203). Together, these studies provide information on two factors and their relationship with transition into palliative care programmes; age and ethnicity.


197

Figure 118. Association between age and transition into palliative care programmes

Four studies report age and transition in palliative care. This evidence relates to likelihood of transfer into palliative care programmes while in the community (202, 203), in hospital (201), and nursing home (109). Kwak et al report no effect of age, whereas Givens report a small but significant effect for age, as do Hauptman using ten-year increments to categorise age (201). Murray, in the dialysis population, reports a marked effect of older age (with reference to those 75 ▲NH death

Primary disease: Heart disease (not CHF) ▲ home death CHF no effect on home death COPD ▲ home death dementia ▲ home death dementia ▲ NH death Associated co-morbidities: co-morbidity ▼home death

Environmental factors Health and care input: Service provision:

social

Social support: Living alone ▼ home death

increased hospital bed availability ▼ home death increased hospital bed availability ▲ hospital death palliative care provision ▼ hospital death

Macro-social factors Specific symptoms. illness burden and trajectories: Degree of impaired mobility/disability severe functional impairment ▲ home death functional status - no effect on hospital death

Place of care and place of death


198

As evident from the tables, there are some factors with high strength and consistent quantitative evidence. Most are personal, demographic or disease related factors. With respect to home death, diagnosis and co-morbidity have a major effect; heart disease in general (although not CHF specifically), COPD and dementia are all associated with increased likelihood of home death. (The contrast between heart disease as an overall category and CHF specifically may in part be accounted for by sudden death from ischaemic heart disease, which may often occur at home). Co-morbidity is also associated with reduced likelihood of home death. The odds ratios for these high strength factors in relation to home death are plotted in Figure 122 below.

Figure 122. Factors with high strength evidence of association with home death in non malignant conditions

It is clear from Figure 122 that heart disease in general (not CHF) and dementia are the factors with greatest weight of association with home death. Co-morbidity is consistently associated with reduced home death, and hospital bed availability has a small association. The factors with strong evidence of association with nursing home death are plotted in Figure 123. In the general non-cancer population, being female or having dementia increases likelihood of nursing home death.


199

Figure 123. Factors with high strength evidence of association with nursing home death in non malignant conditions

Although in the theoretical conceptualisation of factors affecting home death, a number of specific symptom, illness burden and trajectory-related factors were considered, almost no high strength evidence on these was present in published studies. This may in part reflect the relatively recent introduction of these areas (especially trajectory) into non cancer research streams. It may also reflect the challenges of studying how these impact upon place of death. There was also a dearth of high strength evidence in relation to health and social care input; only hospital bed availability is underpinned by evidence. Increased hospital bed availability reduces the likelihood of home death. This made it impossible to reflect in any detail on how health and social care resources influence actual place of death. When moderate strength evidence is also included in the model (see Figure 121), a number of factors are seen to operate across more than one setting. For instance, the same factor is sometimes associated with increased likelihood of hospital death and reduced likelihood of home death. Age, ethnicity, education, marital status, and hospital bed availability all fall into this category: 

Older age is associated with reduced likelihood of hospital death and increased likelihood of nursing home death


207



  

Non white ethnicity is associated with increased likelihood of hospital death, and decreased likelihood of home and nursing home death. Further education is associated with increased likelihood of home death, and decreased likelihood of hospital death. Being single or widowed is associated with greater likelihood of nursing home death and reduced likelihood of hospital death Hospital bed availability is associated with reduced likelihood of home death and greater likelihood of hospital death

In addition, other factors emerge; living alone lessens the likelihood of home death, and higher household income increases the likelihood of home death. Some factors should be interpreted with caution; the evidence on ethnicity largely comes from the US, and may not be generalisable to other countries. Nevertheless, there is some consistency of effect across settings, with factors tending to operate in similar directions. Type of disease (especially dementia), functional status, marital and educational status, and living situation emerge as important influences on place of death. Age is important above 75 years, and hospital bed availability (although a small effect) is very consistent.

The evidence reports some factors specific to certain populations; in nursing home populations, there are additional moderate strength factors which operate. The effects of increasing age and female gender are lost, in age probably because there is less distinction between ages within this population – most are older. Preference for nursing home as place of death is also a factor, as is the availability of face to face out of hours medical and nursing support.


208

15.5 What are the key transitions in care at the end of life and what influences these transitions The key transitions reported by patients with advanced illness and their carers towards end of life, and largely identified from the qualitative evidence, are:

 

 



Social and psychological decline, alongside physical deterioration (135) Transitions when new or different treatments commenced, or into a more palliative phase when no further active treatments were available (145) Entry into care homes or hospital (173, 182) Other forms of relocation, especially for older people with advanced conditions, including from hospital into nursing home (174), from home into nursing or residential care (165, 169, 177, 182), or into hospice care (172) For ESKD patients, the specific transitions onto or off dialysis (156, 160)

The quantitative evidence also provided evidence on transitions back to home, from hospital or nursing home, and into palliative care programmes. Synthesizing this evidence was challenging, because few of the studies were directly comparable. It is especially difficult to compare evidence on transitions between settings which comes from different countries, because of the differing health systems involved. The type of services and how each is used within a health system varies enormously between countries, and interpretation of evidence should therefore be cautious. However, there is some moderate and low strength evidence existing for different transitions. For instance, the transition into hospital from nursing home is more likely in younger nursing home residents, who are more functionally able. This is consistent with the evidence on place of death; nursing home death is more likely in the older and those more functionally impaired. There is high strength evidence that transition into nursing home is much more likely in those cognitively impaired or with dementia; again, this is a pronounced effect, and consistent with the evidence on place of death. Nursing home admission is also more likely in those who are living alone prior to their admission, or those who lack any informal carer support, and this is consistent with the moderate evidence of association between living alone and reduced likelihood of home death. A new finding is that longer hospital stay is associated with increased odds of transition into nursing home, although this evidence is moderate, rather than strong. © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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In the UK there has recently been some emphasis on transfer out of hospital towards the end of life, sometimes to home to die, but also to care homes in the last weeks or months of life. There was no evidence in the literature which reflects this shift, or reported in detail the duration of stay in the care home prior to death. This may be an important factor in whether a care home is perceived as ‘home’ or not, and it would be particularly valuable to have evidence about this, especially about trends in the duration of care home stay up to death over time.

15.6 The work of the Management Fellow within this review One of the particular strengths of this review was the work of the Management Fellow attached to the project, who made considerable contributions to the project in a number of areas:



 

 

Integration into the research team – introducing a new perspective on undertaking a systematic review which had a more clinical and health service management orientation Major contributions to the proposed theoretical modelling Close liaison with management and policy makers, in order to explore how best to implement findings – this component is still developing, because of the timing of outputs from the project (subsequent dissemination to policy makers and mangers to follow) Critique of the emerging findings, to help increase relevance for management and policy makers Through the case studies, through illumination of evidence (see below for examples of case study integration)

15.6.1 Communication, planning ahead and enabling smooth transitions Our work with the Management Fellow associated with this project, in particular reflecting on the case studies undertaken, helped bring home the reality of the rather abstract evidence in terms of the actual illness pathways experienced by individuals and their families. The resonance was especially apparent in the qualitative evidence. For instance, from the qualitative evidence, communication was identified as a key ingredient for good care, with understanding of prognosis, preferences and priorities early in the disease trajectory between the different people involved, the patient, family and health professionals (175), and ideally before transitions into © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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other settings were made (173). This was also an important element in the case studies, with lack of sufficiently early (or sometimes any) advance care planning, poor communication between different services (especially out of hours providers), and fragmented care reported within all twelve case studies.

15.6.2

Disease specific issues

Although only selected case studies were conducted by the Management Fellow, there was again resonance in the concerns raised, especially in the qualitative evidence, and the case studies. For example, in the evidence on COPD, patients’ concerns included a desire to be with family members (147) and availability of support (140); concerns about being a burden (75), the need for information (139), providing continuity (141); the availability of GP’s (142) and receiving care from one’s own GP. As well as this, communication and information (139), and a desire for a place associated with survival (148) were important. In addition, patients who were afraid of suffocating while dying (149) preferred to be in hospital surrounded by family and friends. Improving assistance and promoting independence were seen as important to prevent additional suffering and reduce exacerbations requiring hospitalisation (147). In the case studies, these issues also emerged as dominant; continuity of care, sufficient information, the availability of health care professionals at home and not feeling a burden to carers were important factors for this group of patients to consider. Breathlessness coupled with anxiety, and the presence of social support, were important factors in determining where the patient wanted to be at the end of their life. As identified in the evidence, the fear of suffocation at the end of life contributed to preference to be in hospital in the case studies of COPD too.

15.7

Strengths of this review

This review makes several key contributions to the existing knowledge on preferences for place of care and death, actual place of death and factors which influence this, and transitions towards end of life. It was a challenging task to identify, critically appraise, and synthesize the rather fragmented evidence on preferences regarding place of care and place of death for noncancer patients, and the factors influencing place of death. Our extended model of factors which influence place of care and death for patients with non-cancer diseases constitutes an original point of contribution to the current body of knowledge and clinical practice. This model was based on an existing model of factors influencing place of death in cancer patients (15), to which important and new elements have been added, underpinned by detailed consultation with clinical experts in key non-cancer disease areas. This yielded an extended model of the potential © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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factors which influence place of care and death for those with non malignant conditions, that incorporates contributions from the chronic illness literature (61-64), including experiential and societal perspectives pertinent to non malignant disease, as well as expert opinion. This approach ensured a more objective assessment of the review findings, and informs consideration of gaps in the evidence. It is worth reflecting on the methods used in this systematic review. We adopted a narrative synthesis approach – this is an approach to synthesis of findings from multiple studies that relies primarily on the use of words and text to summarise and explain the findings of the synthesis. Narrative synthesis is suitable for the synthesis of studies where meta-analysis is not possible or for the integration of findings from both quantitative and qualitative studies (as in this review). It does not rest on an authoritative body of knowledge or on reliable and rigorous techniques developed over time and therefore it has been critiqued as being prone to bias. However, guidance has been developed on the use of narrative synthesis (206) and when it is used within the framework and systematic procedures of systematic reviewing and verified within a team of reviewers this can be a valid approach to addressing the problem of integrating complex and diverse evidence into a useable format for policy makers (206). Narrative synthesis was the approach with which we used to synthesize the qualitative evidence on the level of findings and discussion. This was selected as the most appropriate way to integrate the findings as the focus of the studies were too diverse to be investigated with, for example, the meta-ethnographic approach. The joint working between the review team and the management fellow constitutes an additional point of original contribution. The post was held by a senior member of staff from St. Christopher’s hospice in London, representing the perspective of a key potential setting of care and death for people with advanced illness. The role involved close liaison with management and policy makers, exploring how best to implement findings and share insights from the literature evidence; critique of the emerging results, and highlighted effort to increase awareness about our findings to management and policy makers. The case studies developed by the management fellow helped fortify the evidence that transpired through the literature review. There was notable resonance between the qualitative evidence of the literature review and the case studies particularly in terms of communication between different services (e.g. out of hours providers), identified as a key component of good care; understanding early in the disease trajectory between the different people involved, including the patient, family and health professionals (ideally before transitions into other settings); lack of sufficiently early advance care planning, fragmented care and others. Finally, with its magnitude and span of non-cancer conditions, this review has drawn on extensive joint working between a wide range of experts, and © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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presents both the framework to conceptualise and the evidence to underpin a challenging area both for research and for clinical practice.

15.8 15.8.1

Limitations Identifying the evidence

This review has several limitations. The first one relates to the thoroughness of our literature search, and more concretely to its sensitivity11 (high) and specificity12 (low). In our scoping searches, we found the evidence was very widely disseminated, across a wide range of general medical, palliative, geriatric, and disease specific journals (see for instance the diversity of journals from which our included studies come; APPENDIX 3). This provided a major challenge for our identification of evidence. In our search strategy, we made every effort to capture the maximum number of high quality studies of place of care/death preferences for the six selected non-cancer diseases (high sensitivity), and chose a strategy of mid range precision; but even that led to only 238 included studies out of the 10,350 titles/abstracts screened. We therefore overcame the challenge of identifying evidence through our primary search by introducing detailed citation and reference searching of included studies. This was successful, with 559 further references identified this way, but time-consuming, resource intensive, and this overall approach could militate against identifying those studies less frequently referenced by other authors. Whilst we achieved high disease-specificity in the identified literature, we are aware that we could have omitted some literature on place of care/death preferences which are not specific to any particular disease.

15.8.2

Heterogeneity of evidence

The considerable heterogeneity of the studies identified through this review and the challenges that this involves in terms of synthesis of the results, constitute our second limitation. Studies were heterogeneous in three main areas: study design; study population and setting; and methods of data collection. In terms of study design, the literature spanned the full range of qualitative methodologies, to analysis of death registration data (with or without linkage to other routine health databases), secondary

11

Sensitivity for a given topic is defined as the proportion of high quality studies that are retrieved for that topic 205. Wilczynski NL, Haynes RB. EMBASE search strategies achieved high sensitivity and specificity for retrieving methodologically sound systematic reviews. J Clin Epidemiol. 2007 Jan;60(1):29-33. 12 Specificity is defined as the proportion of low quality articles not retrieved through the search 205. Ibid. © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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analyses of routinely-collected data from provider organisations, post-death interviews with bereaved family members, and surveys. The identified literature ranged widely also in terms of study population and setting. Several studies used complete national or cross-national datasets, while others were conducted in a single hospital, nursing home, or community setting, drawing on small population cohorts. The studies identified in this review also originate from a range of countries and regions across the world, such as the USA, Japan, Canada, Australia, Belgium, the Netherlands, England, Scotland, Wales, Singapore, China, Spain and Arabia (see Table 24 and Table 14). Despite the diversity of countries from which evidence derived, evidence from the USA dominated the review. It is not clear how generalisable evidence from one specific health system is, particularly in relation to models of palliative care, and in terms of ecological and population-based factors. Both the diversity of methods and the diversity of health systems from which evidence derives, presented a major challenge for data synthesis and interpretation of our findings across health policy settings. The diverse range of data sources also constituted a limitation particularly in terms of elucidating patient preferences. There are well documented differences between the views of patients and those of proxies (family and health professionals). It is also debatable as to how reliable (past) medical records are as a method to capture preferences. Another key challenge in this review was in the categorisation of place of death. There was marked heterogeneity in approach, within the included studies, both to the outcome of interest and to the potential factors affecting it. For example, some studies classify place of death into a binary variable (e.g. home deaths v deaths elsewhere, hospital deaths v deaths elsewhere), whereas others categorise it into several variables and sometimes in parallel (e.g. hospice death v nursing home death, compared with hospice death v home death). Our approach towards tackling some of the challenges for synthesis that this heterogeneity brings, was to group papers which treat place of death as a binary variable (e.g. home v all other places) together with papers which categorise place of death into several variables (e.g. home v nursing home, home v hospice). However, because of this approach, it is not possible to assume that an increase in one factor associated with greater likelihood of home death necessarily means that a reduction in that same factor is associated with greater likelihood of hospital deaths. The comparator (reference) may be another setting different to hospital. If a factor, however, operates in both categories (is associated with likelihood of home death and likelihood of hospital death), this adds to the validity of the evidence.


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15.8.3

Quality and extent of the evidence

The quality of the evidence was variable; in particular, the number of studies which undertook multi-variate analysis was relatively small. In addition, few studies reported on aspects of transitions, place of care and place of death which are important in the clinically-driven understanding of these phenomena. Although demographic factors are reasonably well studied, perhaps because they are easy to measure, other factors are rarely studied. Major deficiencies in the evidence have emerged, including on:    

Preferences and how these influence actual place of death Disease related factors such as illness burden, trajectory of illness, and specific symptoms Environmental factors, such as social support, health and social care provision Macro-social factors

Social support, and health and social care provision are particularly important to study, because these may be among the factors which can most readily be modified to improve outcomes, and to make best use of resources. There is some indication from this review, for instance, that geographic factors may have a marked effect on place of death, although the strength of this evidence is weak; this may well be related to variations in provision of health and social care. Evidence from different countries is also very uneven, with relatively few analyses of existing large, linked datasets from countries other than the US. With some notable exceptions, few European countries have undertaken this work.


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16 Conclusions This systematic literature review demonstrates clearly that there are major gaps in the evidence to inform policy and services in relation to end of life care for those with non-cancer conditions. Practice is often extrapolated from models of cancer care, and these may not be optimal. For example, the conception of home as preferred place of end of life care, with ‘open’ awareness of approaching death and planning of health care to accommodate decline, is derived largely from cancer care, and (while very appropriate for some) may not accommodate the preferences of some of those with advanced non-cancer conditions, especially those who have a more unpredictable course of illness. It is also clear that those with advanced non-cancer conditions have complex and variable experiences, and widely differing preferences, which serves to emphasise the need for greater patient- and family- centeredness of care. The studies identified in this review originate from a range of countries and regions across the world, with evidence predominantly from the USA. It is not clear how generalisable evidence from one specific health system is, particularly in relation to models of palliative and end of life care, and in terms of ecological and population-based factors. Both the diversity of methods and the diversity of health systems from which evidence derives, presented a major challenge for data synthesis and interpretation of our findings across health policy settings. Our conclusions should be read with this very much in mind. This complex systematic review of the evidence has identified that, among those with advanced non malignant disease:   



Prevalence of patients’ preference for home death is 42-48%, lower than previously reported among cancer patients. Determinants of preferences for place of care and death differ markedly between individuals and across non malignant conditions. Among older people, preferences for place of care and death are complex, highly dependent on circumstances, and may change over time. Across all conditions, considerations of carer/family burden are a major influence on the preferences of those with advanced disease, and this resonates with evidence on the factors which precipitate transition into hospital or nursing home care, and likelihood of death in those places.


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

  









For those with chronic heart failure and chronic obstructive pulmonary disease: o the lack of a clearly predictable pattern of illness has a marked impact on awareness of deterioration and subsequent perspectives about place of care and death o preferences may not always be consistent with a desire for ‘open’ awareness of death Those who prefer hospital care may relate hospital to a sense of safety and/or the perception of better chance of survival. Those with long term neurological conditions may prefer to plan ahead, amid profound concern about burden on their family carers. Dementia is associated with greater odds of home and nursing home death, while co-morbidity is associated with reduced odds of home death. Other factors associated with increased likelihood of home death in non malignant conditions include being married, having further education, and higher household income. Living alone, the absence of an informal carer, and cognitive impairment or dementia all reduce the likelihood of home death, increase the likelihood of transition into nursing home care, and increase likelihood of nursing home death. Health and social care input are associated with place of death, but the evidence on this is limited; what evidence there is indicates that increased palliative care provision is associated with reduced hospital deaths. Increased hospital bed availability also has a consistent, if small, association with place of death - increased availability of hospital beds is associated with reduced home deaths and increased hospital deaths.

A well founded theoretical model of the factors affecting place of death has been developed, and the evidence relating to place of death conceptualised in this context. This model brings together what evidence exists, but also highlights the pronounced gaps in the evidence. There is generally very limited evidence in all areas, and this is compounded by the limitations of applying evidence from one country to another, where health systems may be very different. Focused and high quality research, using multi-variate analyses, is particularly needed on:

   

Preferences and how these influence actual place of death Disease related factors such as illness burden, trajectory of illness, and specific symptoms Environmental factors, such as social support, health and social care provision Macro-social factors


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Analysis of national or sub-national pre-existing linked datasets to understand these factors, plus targeted original research, including longitudinal qualitative, quantitative and mixed methods, will be crucial to advancing this area of practice and research. Comparative research between countries is also important, especially when health system and service factors are studied.

The demographic changes of an ageing UK population and increased numbers of deaths make this work imperative. In this context, social support, and health and social care provision are particularly important to study, because these may be among the factors which can most readily be modified to improve patient outcomes, and to make best use of resources.

16.1.1

Practice and policy implications

The evidence on the factors influencing place of death in non malignant conditions is complex and inter-related. However, clear implications for practice and policy emerge from this synthesis of the evidence. 1. A preference for home death (while still common among non cancer patients) is less prevalent than for cancer patients, so attention should be given to achieving preferred place of care and death in non malignant conditions, wherever that place is. 2. For those with non-cancer conditions, the presence or absence of a family or informal carer is a key component in achieving home death. Effective and sustained carer support, especially in context of longer illnesses trajectories, is likely to increase home death rates. 3. Minority ethnic groups, and those with lower socio-economic status achieve lower rates of home death; best practice initiatives need to target this imbalance, while still taking preferred place into account. 4. For older people, advance care planning is especially important, as their preferences are complex, highly dependent on circumstances, and may well evolve over time. The advance care planning they require therefore needs skilled professionals who can re-visit preferences and planning sensitively and frequently in response to change. 5. In addition, older people are more likely to die in care homes, especially if there is cognitive impairment or dementia. Resources need to be targeted both at improving care home deaths and © Queen’s Printer and Controller of HMSO 2012. This work was produced by Murtagh et al. under the terms of a commissioning contract issued by the Secretary of State for Health Project 08/1813/257

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ensuring the opportunity for home death among older people (especially those who live alone) is adequately supported, when desired and feasible. 6. For those with end-stage heart or respiratory disease, the conception of an ‘open’ awareness of approaching death and forward planning of health care to accommodate decline (derived largely from models of care in cancer), is not always appropriate. Again, skilled advance care planning is important, to work across the range of awareness, and to respond to rapidly changing circumstances. 7. In those conditions with longer trajectories, for instance some long term neurological conditions, advance planning may be welcomed and home death can be supported even when there is marked functional impairment. 8. The increase in the ageing population, with correspondingly higher levels of co-morbidity, will likely mitigate against home deaths and in favour of hospital deaths, unless innovative approaches can be developed to support those with complex co-morbidities in the community. 9. Increased resources for the delivery of palliative care early in the illness trajectory across non malignant conditions will likely reduce hospital deaths.

16.1.2

Research implications

There are major gaps in the current evidence to inform practice and policy, and research is particularly needed: 10.To provide insights into how preferences for place of care and death among those with advanced non malignant conditions evolve over time and with advancing illness, and what factors shape these preferences. 11.To understand how duration and trajectory of illness affect transitions in place of care, and place of death. 12.To determine how health and social care provision in non cancer conditions can influence place of care and death.


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Appendix 1: Consultation participants Table 24. Title

Participants in the consultation to develop the theoretical model Surname

Name Sube

Position

Prof

Banerjee

Professor of Mental Health and Ageing, Institute of Psychiatry and Clinical Director MHOA, South London and Maudsley NHS Foundation Trust Head, Centre for Innovation and Evaluation in Mental Health

Dr. Mrs

Bausewein Blackwell

Claudia Kara

Dr

Burman

Rachel

Ms

Gomes

Barbara

Cicely Saunders Foundation Research Fellow Head of Nursing for Cancer and Palliative Care, King’s College NHS Trust Consultant in Palliative Care/Hon Senior Lecturer, King’s College NHS Trust Research Associate, KCL

Dr

Gysels

Marjolein

Senior Research Fellow, Associate Research Professor

Mrs.

Hansford

Penny

Prof.

Higginson

Irene J

Dr Dr

Jackson Johnston

Diana Bridget

Prof

Kalra

Lalit

Director of Nursing, St. Christopher’s Hospice; Management Fellow with the project Head of Department, Professor of Palliative Care and Policy, Honorary Consultant King's College Hospital Senior Research Fellow, King’s College London Senior Research Fellow, School of Nursing and Midwifery, College of Medicine, Dentistry and Nursing, University of Dundee Professor of Stroke Medicine, King’s College London

Prof

Murray

Scott

Dr

Murtagh

Fliss

Dr Mrs

Petkova Sam

Hristina Emily

St Columba's Hospice Chair of Primary Palliative Care, Primary Palliative Care Research Group, Centre for Population Health Sciences, University of Edinburgh Consultant and Clinical Senior Lecturer in Palliative Care, Systematic Review Project lead, KCL Research Associate, KCL Deputy Director of Policy Development The National Council for Palliative Care, NCPC

Area of expertise and input into the theoretical model Dementia Breathlessness, COPD Transitions Long Term Neurological Conditions Factors affecting place of death; analysis; research; systematic reviews Qualitative research; Breathlessness; Chronic Obstructive Pulmonary Disease (COPD) Dementia; Various aspects of palliative care All aspects of palliative care Long Term Neurological Conditions Health policy, Palliative care nursing perspective The acute treatment of patients with stroke and their rehabilitation; prevention of stroke and reducing risks All aspects of palliative care, and special interest across all non malignant conditions End Stage Chronic Kidney Disease; All aspects of palliative care Qualitative Research; Health care policy Parkinson’s Disease; Health care policy


228

Mrs

Shipman

Cathy

Senior Research Fellow, KCL

Dr

Simon

Steffen

Research Fellow, King's College London

Mrs Mrs Prof

Shepherd Stacpoole TurnerStokes Williams

Kate Min Lynne

Nurse, King’s College NHS Trust Southwark Primary Care Trust, Herbert Dunhill Chair of Academic Rehabilitation

David

Research Associate, King’s College London

Dr

Palliative care in primary care; patient experiences and preferences; medical sociology, transition to community settings; Qualitative Research; Health care policy Palliative care for non-malignant conditions; Stroke; Chronic Heart Failure, Breathlessness End Stage Kidney Disease Dementia, Palliative care nursing Long Term Neurological Conditions Replacement (respite) care among carers of people with long term neurological condition

In addition the Management Fellow organised two focus groups of relevant clinicians for discussion and feedback.


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Appendix 2: Final search strategy The terms used in the final search strategy are presented in Table 25: Table 25. Terms used for the final search strategy (these were refined and adapted to each electronic database)

CRITERIA APPLICABLE ACROSS CONDITIONS (1) Advanced disease terms and their synonyms

palliative care OR terminal care OR terminally ill OR hospice OR end-of-life OR (advanced adj3 (disease or condition or illness)) OR (progressive adj3 (disease or condition or illness))

(2) Factors influencing the outcomes

demography OR population OR birth OR (stage or phase) of disease OR co-morbidity OR (quality of life) OR (daily activity) OR (functional status) OR prognosis OR (life expectancy) OR (health service) OR facilities OR rehabilitation OR respite OR access OR cost OR (resource allocation) OR compensation OR (social care) OR caregiver OR relative OR family OR support OR spiritual OR ethnicity OR culture OR hospitalization OR (social environment) OR rural OR urban OR attitude OR preference OR choice OR priority Or factor OR determinant OR predictor OR effect OR influence OR cause OR (transition or transfer or change or referral or move) OR (communication or language) OR (minority or group*) OR (advance care plan*) OR ACP OR (living will) OR (clinical pathway)

(3) Outcomes

(place adj3 (care or caring or death or dying)) OR (site adj3 (care or caring or death or dying)) OR (location adj3 (care or caring or death or dying)) OR (setting adj3 (care or caring or death or dying)) OR (change adj3 (care or place or site or location or home or hospital or hospice or setting)) OR (transition adj3 (care or place or site or location or home or hospital or hospice or setting)) OR (admission adj3 (care or place or site or location or home or hospital or hospice or setting)) OR (admission adj3 (care or place or


230

site or location or home or hospital or hospice or setting)) OR (home or house or flat or residence or dwelling) OR (nursing home) OR (care home) OR (day care) OR facility SPECIFIC DISEASE TERMS (4) COPD

(chronic obstructive pulmonary disease) OR chronic obstructive lung disease) OR COPD

(5) CHF

chronic heart failure OR chronic cardiac failure OR congestive heart failure OR CHF OR CCF

(6) Dementia

Dementia OR alzheimer’s disease

(7) ESKD

Chronic kidney failure OR Chronic Kidney Disease OR CKD OR chronic renal failure OR end stage kidney failure OR end stage renal failure

(8) LTNC

amyotrophic lateral sclerosis OR motor neuron disease OR ALS OR MND OR multiple sclerosis OR Parkinson’s disease OR multiple system atrophy OR progressive supranuclear palsy OR Huntington’s chorea OR Huntington$

(9) Stroke

Stroke OR cerebrovascular disease OR brain ischemia OR brain hemorrhage OR brain infarction


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260


253

Appendix 4: Excluded papers Author(s)

Year

Title

Acorn M

2008

Agraharkar M, Patlovany M, Henry S, Bonds B

2003

Ahluwalia SC, Fried TR,

2009

Ahmad S, O'Mahony MS

2005

Akazawa Y, Satoh H, Takiguchi K, Sekizawa K, Yamashita YT Almagro P, Calbo E, Ochoa de Echagen A, Barreiro B, Quintana S, Heredia JL, Garau J Anderson JE, Sturgeon D, Lindsay J, Schiller A

2002

In-home palliative care increased patientEvidence-Based Nursing satisfaction and reduced use and costs of medical services Promoting use of home dialysis Advances in peritoneal dialysis Conference on Peritoneal Dialysis Physician factors associated with outpatient Palliative Medicine palliative care referral Where older people die: A retrospective QJM - Monthly Journal of the population-based study Association of Physicians Nursing discharge summaries of deceased International Journal of patients with respiratory diseases. [References] Nursing Practice Mortality after hospitalization for COPD Chest

Anderson MA, Hanson KS, DeVilder NW, Helms LB Andersson FL, Svensson K, Gerhardsson D Aupperle PM, MacPhee ER, Strozeski JE, Finn M, Heath JM

2002

1990

1996 2006 2004

Aylin P, Majeed FA, Cook DG

1996

Balcells E, Anto JM, Gea J, Gomez FP, Rodr¡guez E, Marin A, Ferrer A, de Batlle J, Farrero E, Benet M, OrozcoLevi M, Ferrer J, Agusto AG, Gíldiz JB, Belda J, Garcia-Aymerich J Balinsky W, Rehman S

2009

Barker WH, Zimmer JG, Hall WJ, Ruff BC, Freundlich CB, Eggert GM

1994

Barnato AE, Labor RE, Freeborne NE, Jayes RL, Campbell DE, Lynn J Barry PP, Crescenzi CA, Radovsky L, Kern DC, Steel K Bartolomeo N, Trerotoli P, Moretti A, Serio G Bass DM, Pestello FP, Garland TN

2005

Behnke M, Taube C, Kirsten D, Lehnigk B, JÂrres RA, Magnussen H

2000

1984

1988 2008 1984

Journal

Issue

Start page

End page

11

1

22

22

163

167

Exclude no outcome of interest

19

Reason for exclusion

Exclude no original data

23

7

608

615


98

12

865

870

Exclude not original study

8

5

282

285


121

5

1441

1448


Kidney

16

2

137

141


Journal of Community Health Nursing Respiratory Medicine

13

1

1

12

100

8

1436

1441

21

6

427

437


British Medical Journal

313

7051

207

210


Respiratory Medicine

103

9

1293

1302

Exclude not advanced disease

services

5

1

45

60


Public

84

10

1615

1620


American

53

1

66

73

American

36

5

419

424

Research

8 8

4

199

222

Exclude not eligible population

94

12

1184

1191


Use of continuous ambulatory peritoneal dialysis in a nursing home: Patient characteristics, technique success, and survival predictors Hospital readmissions during home care: A pilot study Hospital use for COPD patients during the last few years of their life Hospice use for the patient with advanced Alzheimer's disease: The role of the geriatric psychiatrist Home visiting by general practitioners in England and Wales Characteristics of patients admitted for the first time for COPD exacerbation

American Diseases

Home health care: a comparative analysis of hospital-based and community-based agency patients Rates, patterns, causes, and costs of hospitalization of nursing home residents: A population-based study Qualitative analysis of Medicare claims in the last 3 years of life: A pilot study Why elderly patients refuse hospitalization

Home health quarterly

A markov model to evaluate hospital readmission Experiences with home hospice care: Determinants of place of death Home-based exercise is capable of preserving hospital-based improvements in severe chronic obstructive pulmonary disease

Vol

Journal

of

American Journal of Hospice and Palliative Medicine

American Health

care

Journal

of

Journal of the Geriatrics Society Journal of the Geriatrics Society BMC Medical Methodology Death Education Respiratory Medicine

Exclude, not eligible population, not advanced disease Exclude no outcome of interest

Exclude not appropriate population Exclude not advanced disease Exclude no outcome of interest


262

Bell CL, Somogyi-Zalud E, Masaki KH

2010

Bergman H, Clarfield AM

1991

Bixby MB, McKenna CG Black B.

Konick-McMahon

J,

2000 2009

Black BS, Rabins PV, German PS

1999

Bleeker F, Kruschinski C, Breull A, Berndt M, Hummers-Pradier E Borrayo EA, Salmon JR, Polivka L, Dunlop BD Branch LG, Jette AM

2007

Brazil K, Bedard M, Krueger P, Abernathy T, Lohfeld L, Willison K Brodaty H, McGilchrist C, Harris L, Peters KE

2005

Brunker CP

2008

Buchanan JL, Murkofsky RL, O'Malley AJ, Karon SL, Zimmerman D, Caudry DJ, Marcantonio ER

2006

2002 1982

1993

Factors Associated with Congruence Between Preferred and Actual Place of Death Appropriateness of patient transfer from a nursing home to an acute-care hospital: A study of emergency room visits and hospital admissions Applying the transitional care model to elderly patients with heart failure Understanding Dementia Patients’ Prior Wishes for End-of-Life Care Predictors of nursing home placement among elderly public housing residents Characteristics of palliative care patients in general practice. [German] Utilization across the continuum of long-term care services A prospective study of long-term care institutionalization among the aged Service preferences among family caregivers of the terminally ill Time until institutionalization and death in patients with dementia: Role of caregiver training and risk factors Challenges of non cancer patients transitioning to hospice Nursing home capabilities and decisions to hospitalize: A survey of medical directors and directors of nursing

Journal of Pain and Symptom Management Journal of the American Geriatrics Society

39

3

591

604

Exclude not original research

39

12

1164

1168


Journal of Cardiovascular Nursing Southern Online Journal of Nursing Research Gerontologist

14

3

53

63

39

5

559

568


Zeitschrift Allgemeinmedizin Gerontologist

83

12

477

482


42

5

603

612


American Journal of Public Health Journal of Palliative Medicine

72

12

1373

1379


8

1

69

78


Archives of Neurology

50

6

643

650


Home Health Care Management & Practice Journal of the American Geriatrics Society

20

5

400

403

Exclude not original article

54

3

458

465


fur

Exclude not appropriate design only 4 case studies Exclude not appropriate design


263

Buchanan RJ, Wang S, Huang C, Simpson P, Manyam BV Carey EC, Covinsky KE, Lui L, Eng C, Sands LP, Walter LC Carey HB, Chorney W, Pherson K, Finkelstein FO, Kliger AS Carter MW, Porell FW

2002 2008 2001 2005

Casarett D, Crowley R, Stevenson C, Xie S, Teno J

2005

Casarett DJ, Hirschman KB, Henry MR

2001

Catalano C, Goodship THJ, Graham KA, Marino C, Brown AL, Tapson JS, Ward MK, Wilkinson R Chahine LM, Malik B, Davis M

1996

Charlton RC

1991

Chau PH, Kwok T, Woo J, Chan F, Hui E, Chan KC

2010

Chen LK, Peng LN, Lin MH, Lai HY, Hwang SJ, Lan CF

2010

Chen WT, Wang SJ, Lu SR, Fuh JL

2002

Christakis NA

1994

Christakis NA, Escarce JJ

1996

Christakis NA, Iwashyna TJ, Zhang JX

2002

Ciemins EL, Stuart B, Gerber R, Newman J, Bauman M

2006

2008

Analyses of nursing home residents with Parkinson's disease using the minimum data set Prediction of mortality in community-living frail elderly people with long-term care needs Continuous peritoneal dialysis and the extended care facility Vulnerable populations at risk of potentially avoidable hospitalizations: The case of nursing home residents with Alzheimer's disease Making difficult decisions about hospice enrollment: What do patients and families want to know? Does hospice have a role in nursing home care at the end of life? Withdrawal of renal replacement therapy in Newcastle upon Tyne: 1964-1993

Parkinsonism and Related Disorders Journal of the American Geriatrics Society American Journal of Kidney Diseases American Journal of Alzheimer's Disease and other Dementias Journal of the American Geriatrics Society

8

5

369

380


56

1

68

75


37

3

580

587


20

6

349

358


53

2

249

254


American

49

11

1493

1498


Dialysis

11

1

133

139


Palliative care needs of patients with neurologic or neurosurgical conditions Attitudes towards care of the dying: A questionnaire survey of general practice attenders Disagreement in preference for residential care between family caregivers and elders is greater among cognitively impaired elders group than cognitively intact elders group Predicting mortality of older residents in longterm care facilities: Comorbidity or care problems? Which level of care is preferred for end-stage dementia? Survey of Taiwanese caregivers Timing of referral of terminally ill patients to an outpatient hospice Survival of Medicare patients after enrollment in hospice programs Care after the Onset of Serious Illness: A Novel Claims-Based Dataset Exploiting Substantial Cross-Set Linkages to Study End-of-Life Care An evaluation of the Advanced Illness Management (AIM) program: Increasing hospice utilization in the San Francisco Bay area

European Journal of Neurology

15

12

1265

1272


8

4

356

359


of

25

1

46

54


Journal of the American Medical Directors Association

11

8

567

571


Journal of Geriatric Psychiatry & Neurology Journal of General Internal Medicine New England Journal of Medicine Journal of Palliative Medicine

15

1

16

19


9

6

314

320


335

3

172

178


5

4

515

529


9

6

1401

1411

Journal of the Geriatrics Society Nephrology Transplantation

Family Practice

International Journal Geriatric Psychiatry

Journal of Palliative Medicine

Exclude no outcome of interest, no information on diagnosis and population can not be defined


264

Claessens MT, Lynn J, Zhong Z, Desbiens NA, Phillips RS, Wu AW, Harrell FE Jr., Connors AFJ Clarke M, Bratan T, Kulkarni S, Jones R

2000

Dying with lung cancer or chronic obstructive pulmonary disease: Insights from SUPPORT

Journal of the Geriatrics Society

2007

Anadolu Kardiyoloji Dergisi

Coehlo DP, Hooker K, Bowman S

2007

Cogen R, Patterson B, Chavin S, Cogen J, Landsberg L, Posner J

1992

Cohen J, Bilsen J, Miccinesi G, LÂfmark R, Addington-Hall J, Kaasa S, Norup M, Van Der Wal G, Deliens L Colerick EJ, George LK

2007

Collins C, Ogle K

1994

Condelius A, Edberg A, Hallberg IR, Jakobsson U

2010

Connolly S, O'Reilly D,

2009

Davidson PM, Paull G;Introna K, Cockburn J, Davis JM, Rees D, Gorman D, Magann L, Lafferty M, Dracup K Duthie J, Chesson R

2004

The impact of remote patient monitoring in managing silent myocardial infarction in a residential home setting Institutional placement of persons with dementia: What predicts occurrence and timing? Surrogate decision-maker preferences for medical care of severely demented nursing home patients Using death certificate data to study place of death in 9 European countries: Opportunities and weaknesses Predictors of institutionalization among caregivers of patients with Alzheimer's disease Patterns of predeath service use by dementia patients with a family caregiver Utilization of medical healthcare among people receiving long-term care at home or in special accommodation Variation in care home admission across areas of Northern Ireland Integrated, Collaborative Palliative Care in Heart Failure The St. George Heart Failure Service Experience 1999–2002 Physiotherapy in private nursing homes

Eaker ED, Vierkant RA, Mickel SF

2002

admission and/or disease and other to controls: A

Journal of Epidemiology

Ellershaw J

2007

differene an LCP

Palliative Medicine

Emanuel LL, Von Gunten CF, Ferris FD

2000

Predictors of nursing home death in incident Alzheimer's dementia cases compared population-based study Care of the dying: What a makes! Gaps in end-of-life care

Engel SE, Kiely DK, Mitchell SL

2006

Enguidanos S, Chambers J

2008

Finlayson M

2002

1986

1996

Satisfaction with end-of-life care for nursing home residents with advanced dementia In-home palliative care increased patient satisfaction and reduced use and costs of medical services: Commentary Changes predicting long-term care use among the oldest-old

American

Journal of Family Nursing Archives of Internal Medicine

BMC Public Health

48

5 Suppl

S146

S153

7

SUPPL. 1

186

188

Exclude not appropriate design only 3 case studies

13

2

253

277


152

9

1885

1888

7




Journal of the American Geriatrics Society Journal of the American Geriatrics Society Scandinavian Journal of Caring Sciences

34

7

493

498

42

7

719

722

Exclude not appropriate population Exclude no outcome of interest

24

2

404

413


Age and Ageing

38

4

461

465


19

1

68

75

Exclude not appropriate design

82

10

566

572


55

5

462

468


21

5

365

368


9

10

1176

1180


Journal of the American Geriatrics Society Evidence-Based Medicine

54

10

1567

1572


13

1

19

Gerontologist

42

4

443

Journal Nursing

of

Cardiovascular

Physiotherapy Clinical

Archives of Family Medicine


453



265

Finn JC, Flicker L, Mackenzie E, Jacobs IG, Fatovich DM, Drummond S, Harris M, Holman DCDJ, Sprivulis P Forbat L, Service KP

2006

2005

Forma L, Rissanen P, Noro A, Raitanen J, Jylhñ M Formiga F, Espel E, Chivite D, Pujol R

2007

Fox E, Landrum-McNiff K, Zhong Z, Dawson NV, Wu AW, Lynn J

1999

Freeborne N, Lynn J, Desbiens NA, Phillips RS, Hamel MB, Covinsky KE, Lynn J Freedman VA, Berkman LF, Rapp SR, Ostfeld AM Freiman MP, Murtaugh CM, Shine KI

2000

Torres H, Von Strauss E, Viitanen M, Winblad B, Fratiglioni L

2001

Galanos AN, Hays JC, Moore JD, Poppe A Garcia-Garcia G, Briseno-Renteria G, Luquin-Arellan VH, Gao Z, Gill J, Tonelli M Gibson R,

2004

2002

1994 1995

2007

Interface between residential aged care facilities and a teaching hospital emergency department in Western Australia Who cares? Contextual layers in end-of-life care for people with intellectual disability and dementia Health and social service use among old people in the last 2 years of life Dying from heart failure in hospital: Palliative decision making analysis Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart, or liver disease Insights about dying from the SUPPORT project

Medical Journal of Australia

184

9

432

435


Dementia

4

3

413

431


European Journal of Ageing

4

3

145

154


88

2

187

282

17

1638

American

48

5 SUPPL.

Family networks: Predictors of nursing home entry Interactions: Between hospital and nursing home use Institutionalization in the elderly: The role of chronic diseases and dementia. Cross-sectional and longitudinal data from a population-based study Where do continuing care retirement community residents die? [1] Survival among patients with kidney failure in Jalisco, Mexico

American Journal of Public Health Public Health Reports

84

5

843

845

110

5

546

554


Clinical

54

8

795

801


Journal of the American Geriatrics Society Journal of the American Society of Nephrology

52

8

1401

1402

18

6

1922

1927

Heart Journal of the American Medical Association Journal of the Geriatrics Society

Journal of Epidemiology

1973

Supporting the patient in the home


Gilmartin M, Celli BR, Bach JR, Hill NS, Sortor- Leger, Hoffman, Fletcher, Make B, Stoller JK Gonsalkorale M

1994

Transition from the intensive care unit to home: Patient selection and discharge planning

Respiratory Care

2005

Palliative care in Parkinson's disease

CME Journal Geriatric Medicine

Goodman C, Evans C, Wilcock J, Froggatt K, Drennan V, Sampson E, Blanchard M, Bissett M, Iliffe S Gott M, Seymour J, Bellamy G, Clark D, Ahmedzai S

2010

End of life care for community dwelling older people with dementia: An integrated review

International Journal Geriatric Psychiatry

2004

Older people's views about home as a place of care at the end of life

Palliative Medicine

of

Exclude no outcome of interest 1645



Exclude not original study, letter to editor Exclude no outcome of interest

1

5844

35

36

39

5

456

480


7

1

22

28

25

4

329

337

Exclude no outcome of interest, context paper

18

5

460

467





266

Goy ER, Carter J, Ganzini L

2008

Goy ER, Carter JH, Ganzini L

2008 Jun 1999

Grande GE, Todd CJ, Barclay SIG, Farquhar MC Greene VL, Ondrich JI

1990

Gruneir A, Mor V, Weitzen S, Truchil R, Teno J, Roy J

2007

Gruneir A, Mor V, Weitzen S, Truchil R, Teno J, Roy J

2007

Grunfeld E, Glossop R, McDowell I, Danbrook C Hain D

1997

Han B, Remsburg RE, Iwashyna TJ

2006

Han B, Tiggle RB, Remsburg RE

2008

Hanratty B, Jacoby A, Whitehead M

2008

Hansen-Flaschen J

2004

Happ MB, Naylor MD, Roe-Prior P.

1997

Haupt BJ

2003

Hernandez C, Casas A, Escarrabill J, et al Heyman A, Peterson B, Fillenbaum G, Pieper C

2003

2010

1997

Neurologic disease at the end of life: caregiver descriptions of Parkinson disease and amyotrophic lateral sclerosis Needs and experiences of care-givers for family members dying with Parkinson disease Does hospital at home for palliative care facilitate death at home? Randomised controlled trial Risk factors for nursing home admissions and exits: A discrete-time hazard function approach Where people die: A multilevel approach to understanding influences on site of death in America Where people die: A multilevel approach to understanding influences on site of death in America Caring for elderly people at home: The consequences to caregivers Place of Death by PCT by month


11

4

548

554


Journal of Palliative Care

24

2

69

75



319

7223

1472

1475


Journals of Gerontology

45

6

Medical Care Research and Review

64

4

351

378


Medical Care Research and Review

64

4

351

378

Exclude not original research

157

8

1101

1105

Differences in hospice use between black and white patients during the period 1992 through 2000 Characteristics of patients receiving hospice care at home versus in nursing homes: Results from the National Home and Hospice Care Survey and the National Nursing Home Survey Socioeconomic differences in service use, payment and receipt of illness-related benefits in the last year of life: Findings from the British Household Panel Survey Chronic obstructive pulmonary disease: the last year of life Factors contributing to rehospitalization of elderly patients with heart failure Characteristics of hospice care discharges and their length of service: United States, 2000 Home hospitalisation of exacerbated chronic obstructive pulmonary disease patients Predictors of time to institutionalization of patients with Alzheimer's disease: The CERAD experience, Part XVII

Medical Care

44

8

731

737


American Journal of Hospice and Palliative Medicine

24

6

479

486


Palliative Medicine

22

3

248

255


Respiratory care

49

1

90

97


The Journal of Cardiovascular 11 Nursing Vital and health statistics Series 13, Data from the National Health Survey European Respiratory Journal 21

4

75

84


154

1

36


1

58

67


5

1304

1309

CMAJ


Eastern Region Public Health Observatory

Neurology

48

Exclude no outcome of interest Exclude not eligible population



267

Hicks F, Corcoran G

1993

Hirahara S

2004

Hirakawa Y, Masuda Y, Kuzuya M, Iguchi A, Asahi T, Uemura K

2006

Hirakawa Y, Masuda Y, Kuzuya M, Iguchi A, Uemura K, Hirakawa Y, Masuda Y, Kuzuya M, Kimata T, Iguchi A, Uemura K

2006

Hirakawa Y, Masuda Y, Kuzuya M, Kimata T, Iguchi A, Uemura K Hirakawa Y, Masuda Y, Uemura K, Kuzuya M, Kimata T, Iguchi A

2006

2006

2006

Hoenig H, Sloane R, Horner RD, Zolkewitz M, Reker D

2001

Howarth G, Willison KB

1995

Hu WY, Chiu TY, Cheng YR, Chuang RB, Chen CY

2004

Huang YC, Huang SJ, Ko WJ

2009

Huber DL, McClelland E

2003

Hunt RW, Bond MJ, Groth RK, King PM

1991

Husebo BS, Husebo S

2005

Iecovich E, Carmel S, Bachner YG

2009

Inglis SC, Pearson S, Treen S, Gallasch T, Horowitz JD, Stewart S

2006

Iwashyna TJ, Chang VW, Zhang JX, Christakis NA

2002

Should hospices offer respite admissions to patients with motor neurone disease? [The present state and subject of home hospice for patients with non-cancer disorders]. [Japanese] Home end-of-life care for advanced dementia vs advanced cancer elderly patients: Dying elderly at home project How elderly people die of nonmalignant pulmonary disease at home Symptom experience and patterns of end-of-life - Home care for elderly patients with cancer vs. those without cancer in Japan End-of-life experience of demented elderly patients at home: Findings from DEATH project End-of-life care at group homes for patients with dementia in Japan: findings from an analysis of policy-related differences Differences in rehabilitation services and outcomes among stroke patients cared for in Veterans Hospitals Preventing crises in palliative care in the home. Role of family physicians and nurses Why Taiwanese hospice patients want to stay in hospital: Health-care professionals' beliefs and solutions Going home to die from surgical intensive care units Patient preferences and discharge planning transitions Place of death in South Australia. Patterns from 1910 to 1987 Nursing homes as arenas of terminal care: Practical aspects. [Norwegian] Where they want to die: Correlates of elderly persons' preferences for death site Extending the horizon in chronic heart failure: Effects of multidisciplinary, home-based intervention relative to usual care The lack of effect of market structure on hospice use

Palliative Medicine

7

2

145

150


Suppl

8


Gan to Kagaku Ryoho [Japanese Journal of Cancer & Chemotherapy] Japanese Journal of Geriatrics

31

43

3

355

360


Japan Medical Journal Japan Medical Journal

Association

49

3

106

111


Association

49

07-Aug

243

250


6

2

60

67


Archives of Gerontology & Geriatrics

42

3

233

245


Health Services Research

35

6

1293

1318


Canadian Family Physician

41

439

445


Supportive Care in Cancer

12

5

285

292

Exclude not eligible population (cancer)

Intensive Care Medicine

35

5

810

815


Journal of Professional Nursing

19

4

204

210


Medical Journal of Australia

155

8

549

553

Tidsskrift for den Norske Laegeforening Social Work in Public Health

125

10

1352

1354

Exclude not eligible population (cancer) Exclude no original data

24

6

527

542


Circulation

114

23

2466

2473


37

6

1531

1551


Psychogeriatrics

Health Services Research


268

Johnson KS, Kuchibhatla M, Tulsky JA

2008

Jordhoy MS, Fayers P, Saltnes T, hlnerElmqvist M, Jannert M, Kaasa Joshi K, Guthmann R, Kishman C

2000

Kohnlein P, Kobler A, Raubold S, Worrell M, Kurt A, Gdynia HJ, Sperfeld AD, Ludolph AC Kao HFS, Travis SS, Acton GJ, Talerico KA,

2008

Kapo J, Harrold J, Carroll JT, Rickerson E, Casarett D Kapo J, Macmoran H, Casarett D

2005

Kavanagh S, Knapp M

1998

Kind AJH, Smith MA, Liou JI, Pandhi N, Frytak JR, Finch MD

2010

Kite S, Jones K, Tookman A

1999

Kovach CR

1998

Kralik D, Anderson B

2008

Krivickas LS, Shockley L, Mitsumoto H

1997

Lagman RL, Walsh D, Kunkle C, LeGrand SB, Davis MP Lagoe RJ, Noetscher CM, Murphy MP Landi F, Lattanzio F, Gambassi G, Zuccal+á G, Sgadari A, Panfilo M, Ruffilli MP, Bernabei R


2006

What explains racial differences in the use of advance directives and attitudes toward hospice care? A palliative-care intervention and death at home: A cluster randomised trial How do we decide when a patient with nonmalignant disease is eligible for hospice care? Palliative care and circumstances of dying in German ALS patients using non-invasive ventilation Relocation to a long-term care facility: Working with patients and families before, during, and after Are we referring patients to hospice too late? Patients' and families' opinions 'Lost to follow-up': Ethnic disparities in continuity of hospice care at the end of life The impact on general practitioners of the changing balance of care for elderly people living in institutions Discharge Destination's Effect on Bounce-Back Risk in Black, White, and Hispanic Acute Ischemic Stroke Patients Specialist palliative care and patients with noncancer diagnoses: The experience of a service Nursing home dementia care units. Providing a continuum of care rather than aging in place Differences in home-based palliative care service utilisation of people with cancer and non-cancer conditions Home care of patients with amyotrophic lateral sclerosis (ALS) Deaths in an Academic Medical Center

2001 1999

2006

2004

2005

American

56

10

1953

1958

356

9233

888

893


55

6

525

529


9

2

91

98


42

3

10

16



8

3

521

527



8

3

603

608

317

7154

322

327

Exclude not appropriate population Exclude not advanced disease

Archives of Physical Medicine and Rehabilitation

91

2

189

195


Palliative Medicine

13

6

477

484


Journal of Gerontological Nursing Journal of Clinical Nursing

24

4

30

36


17

11C

429

435


Journal of the Neurological Sciences Journal of Palliative Medicine

152 9

SUPPL. 1 6

Hospital readmission: predicting the risk

Journal of Nursing Care Quality

15

4

69

83

A model for integrated home care of frail older patients: The Silver Network project

Aging Clinical Experimental Research

11

4

262

272

Lancet Journal of Family Practice

Amyotrophic Lateral Sclerosis

Journal of Psychosocial Nursing and Mental Health Services


and

Exclude not population

appropriate

Exclude no outcome of interest 1260

1263

Exclude no population of interest Exclude no outcome of interest Exclude not advanced disease


269

Landi F, Onder G, Cesari M, Zamboni V, Russo A, Barillaro C, Bernabei R Leovi-ì M

2006

Lee T, Kovner CT, Mezey MD, Ko IS

2001

Leff B, Burton L, Mader SL, Naughton B, Burl J, Inouye SK, Greenough III WB, Guido S, Langston C, Frick KD, Steinwachs D, Burton JR Levenson JW, McCarthy EP, Lynn J, Davis RB, Phillips RS Lewis BE, O'Mara P, Pezzella S

2005

1999

Lewis L

1988

Lezovic M

2009

Liu LF, Tinker A

2001

London MR, McSkimming S, Drew N, Quinn C, Carney B

2005

Louis ED, Henchcliffe C, Bateman BT, Schumacher C

2007

Lubin S

1992

Luchins DJ, Hanrahan P

1993

Luchins DJ, Hanrahan P, Murphy K

1997

Ludke RL, Smucker DR

2007

Lunney JR, Lynn J, Hogan C

2002

2009

2000

Functional decline in frail community-dwelling stroke patients Analysis of long term care in the context of social and health services in social institutional facilities in Slovakia Factors influencing long-term home care utilization by the older population: Implications for targeting Hospital at home: Feasibility and outcomes of a program to provide hospital-level care at home for acutely III older patients


13

1

17

23


Central European Journal of Public Health

17

3

128

132


Public Health Nursing

18

6

443

449


143

11

The last six months of life for patients with congestive heart failure The development and implementation of a disease management program in a managed care setting Housing people with HIV dementia

Journal of the American Geriatrics Society Annals of Long Term Care

48

5 SUPPL. 6

Analysis of the structure of services provided in the healthcare facilities in long term care in Slovakia Factors associated with nursing home entry for older people in Taiwan, Republic of China Evaluation of a comprehensive, adaptable, lifeaffirming, longitudinal (CALL) palliative care project Young-onset Parkinson's disease: Hospital utilization and medical comorbidity in a nationwide survey Palliative care--could your patient have been managed at home? What is appropriate health care for end-stage dementia? Criteria for enrolling dementia patients in hospice Racial differences in the willingness to use hospice services Profiles of older medicare decedents

Bratislava Medical Journal

Annals of Internal Medicine

AIDS Patient Care

7


S101

S109


226

231


Exclude non original research

2

3

35

37

110

11

701

704


Journal of Interprofessional Care Journal of Palliative Medicine

15

3

245

255


8

6

1214

1225


Neuroepidemiology

29

01-Feb

39

43


8

2

18

22


Journal of the American Geriatrics Society Journal of the American Geriatrics Society Journal of Palliative Medicine

41

1

25

30


45

9

1054

1059


10

6

1329

1337



50

6

1108

1112


Journal of palliative care

American


270

Lynn J, Harrell F, Cohn F, Wagner D, Connors AF

1997

Prognoses of seriously ill hospitalized patients on the days before death: Implications for patient care and public policy Home haemodialysis - International trends and variation People with heart failure and home health care resource use and outcomes Trends and determinants of end-of-life practices in ALS in the Netherlands

New Horizons: Science and Practice of Acute Medicine

5

1

56

61


MacGregor MS, Agar JWM, Blagg CR

2006

Nephrology Dialysis Transplantation Journal of Clinical Nursing

21

7

1934

1945


Madigan E

2008

17

7B

253

259


Maessen M, Veldink JH, OnwuteakaPhilipsen BD, de Vries JM, Wokke JH, G, LH Marek KD, Rantz MJ

2009

Neurology

73

12

954

961


2000

Aging in place: a new model for long-term care

24

3

1

11

Martikainen P, Nihtil+ñ E, Moustgaard H

2008

63

2

Exclude no outcome of interest, context paper Exclude no outcome of interest

Mazzocato C, Michel-Nemitz J, Anwar D, Michel P

2010


17

1

73

77


McCarthy EP, Pencina MJ, Kelly-Hayes M, Evans JC, Oberacker EJ, D'Agostino S, Burns RB, Murabito JM McCarthy M, ddington-Hall J, Altmann D McCluskey L, Houseman G

2008

Journals of Gerontology Series A Biological Sciences and Medical Sciences International Journal of Geriatric Psychiatry Journal of Palliative Medicine

63

9

951

959


12

3

404

409


7

1

47

53


McDonald GJ

1981

2

259

273


2008

Nursing Clinics America Medical Care

16

McGhee SM, Schooling CM, Wong LC, Leung GM, Ho LM, Thomas GN, Ho DS, Lam TH, Hedley AJ McKeown A, Agar R, Gambles M, Ellershaw JE, Hugel H McWhinney IR, Bass MJ, Orr V

The effects of socioeconomic status and health on transitions in living arrangements and mortality: A longitudinal analysis of elderly finnish men and women from 1997 to 2002 The last days of dying stroke patients referred to a palliative care consult team in an acute hospital Advance care planning and health care preferences of community-dwelling elders: The Framingham heart study The experience of dying with dementia: A retrospective study Medicare Hospice Referral Criteria for Patients with Amyotrophic Lateral Sclerosis: A Need for Improvement A home care program for patients with chronic lung disease Does smoking affect hospital use before death? A comparison of ever- and never-smokers in the last years of life Renal failure and specialist palliative care: an assessment of current referral practice Factors associated with location of death (home or hospital) of patients referred to a palliative care team

Nursing administration quarterly Journals of Gerontology Series B Psychological Sciences and Social Sciences

46

6

614

619


14

9

454

458


152

3

361

367

Medici V, Rossaro L, Wegelin JA, Kamboj A, Nakai J, Fisher K, Meyers FJ

2008

14

8

1100

1106

Exclude not appropriate population, < 10% non-cancer patients, only relevant group is MND with 2.3% Exclude no outcome of interest

1997 2004

2008 1995

The utility of the model for end-stage liver disease score: A reliable guide for liver transplant candidacy and, for select patients, simultaneous hospice referral

of

North

International Journal Palliative Nursing CMAJ

of

Liver Transplantation

appropriate


271

Meehan T, Robertson S, Vermeer C

2001

The impact of relocation on elderly patients with mental illness

The Australian and New Zealand journal of mental health nursing Revue de Geriatrie

10

4

236

242


Menecier P, Debacker J, Ravier A, Arezes C, Menecier-Ossia L, Lenoir C, Guillermet M Miller EA, Rosenheck RA

2002

Death in medical facilities for elders

27

8

629

634

Excluded no outcome of interest

2006

Medical Care

44

4

343

351


American

52

8

1331

1336


American

52

8

1284

1292


6

5

725

736


Alzheimer Disease and Associated Disorders Journal of the American Geriatrics Society Geriatric Nursing

20

3

166

175


55

3

432

438


2004

Risk of nursing home admission in association with mental illness nationally in the Department of Veterans Affairs Hospice care in nursing homes: Is site of care associated with visit volume? Government expenditures at the end of life for short- and long-stay nursing home residents: Differences by hospice enrollment status Factors Associated with the High Prevalence of Short Hospice Stays Advanced dementia research in the nursing home: The CASCADE study Decisions to forgo hospitalization in advanced dementia: A nationwide study Assisted living: Aging in place and palliative care

Miller SC

2004

Miller SC, Intrator O, Gozalo P, Roy J, Barber J, Mor V

2004

Miller SC, Weitzen S, Kinzbrunner B

2003

Mitchell SL, Kiely DK, Jones RN, Prigerson H, Volicer L, Teno JM Mitchell SL, Teno JM, Intrator O, Feng Z, Mor V Mitty EL,

2006

25

3

149


Moinpour CM, Polissar L, Conrad DA

1990

Factors associated with length of stay in hospice

Medical Care

28

4

363

156+16 3 368

Montgomery RJV, Kosloski K

1994

Journals of Gerontology

49

2

Moss AH

2001

Journal of Clinical Ethics

12

4

406

414


Munday D, Dale J, Murray S

2007

100

5

211

215

Exclude not appropriate design, a case study

Munroe CA, Sirdofsky MD, Kuru T, Anderson ED Murray LM, Laditka SB

2007

Respiratory Care

52

8

996

999


Journal of the American Medical Directors Association

11

4

231

238


Nakanishi M, Honda T

2009

A longitudinal analysis of nursing home placement for dependent elders cared for by spouses vs adult children Shared decision making in dialysis: A new clinical practice guideline to assist with dialysis-related ethics consultations Choice and place of death: Individual preferences, uncertainty, and the availability of care End-of-life decision making in 42 patients with amyotrophic lateral sclerosis Care transitions by older adults from nursing homes to hospitals: Implications for long-term care practice, geriatrics education, and research Processes of decision making and end-of-life care for patients with dementia in group homes in Japan

Archives of Gerontology and Geriatrics

48

3

296

299


2007

2010

Journal of the Geriatrics Society Journal of the Geriatrics Society


Journal of the Royal Society of Medicine

Exclude no outcome of interest Exclude not advanced disease


272

Namba R

2006

[Palliative care at the end of life for intractable neurological diseases]. [Japanese]

Nihtila E, Martikainen P

2007

O'Brien T, Kelly M, Saunders C

1992

Household income and other socio-economic determinants of long-term institutional care among older adults in Finland Motor neurone disease: A hospice perspective

Owen JE, Goode KT, Haley WE

2001

Partridge MR, Khatri A, Sutton L, Welham S, Ahmedzai SH Patil SP, Krishnan JA, Lechtzin N, Diette GB

2009

Patti P, Amble K, Flory M

2010

Polissar L, Severson RK, Brown NK

1987

Pooler J, Yates A, Ellison S

2007

Porock D, Oliver DP, Zweig S, Rantz M, Mehr D, Madsen R, Petroski G

2005

Porter B, Henry SR, Gray WK, Walker RW Ratner E, Norlander L, McSteen K

2010

Reddy NC, Korbet SM, Wozniak JA, Floramo SL, Lewis EJ Reilly RB, Teasdale TA, McCullough LB

2007

Rhodes RL, Teno JM, Connor SR

2007

Rhodes RL, Teno JM, Welch LC

2006

2003

2001

1994

End of life care and reactions to death in AfricanAmerican and white family caregivers of relatives with Alzheimer's disease Palliative care services for those with chronic lung disease In-hospital mortality following acute exacerbations of chronic obstructive pulmonary disease Placement, relocation and end of life issues in aging adults with and without Down's syndrome: A retrospective study Factors affecting place of death in Washington State, 1968-1981 Caring for patients dying at home from heart failure: a new way of working Predicting death in the nursing home: development and validation of the 6-month Minimum Data Set mortality risk index Care requirements of a prevalent population of people with idiopathic Parkinson's disease Death at home following a targeted advancecare planning process at home: The kitchen table discussion Staff-assisted nursing home haemodialysis: patient characteristics and outcomes Projecting patients' preferences from living wills: An invalid strategy for management of dementia with life-threatening illness African American Bereaved Family Members' Perceptions of the Quality of Hospice Care: Lessened Disparities, But Opportunities to Improve Remain Access to hospice for African Americans: Are they informed about the option of hospice?

Gan to Kagaku Ryoho [Japanese Journal of Cancer & Chemotherapy] Population Studies

33

Suppl

42

Exclude not appropriate study design case studies

61

3

299

314


304

6825

471

473


43

4

349

361


6

1

13

17


163

10

1180

1186


Journal of Intellectual Disability Research

54

6

538

546


Journal of Community Health

12

1

40

55


International Journal of Palliative Nursing Journals of Gerontology Series A-Biological Sciences & Medical Sciences Age and Ageing

13

6

266

271

60

4

491

498

39

1

57

61



American

49

6

778

781


Nephrology Transplantation Journal of the Geriatrics Society

Dialysis

22

5

1399

1406


American

42

9

997

1003


Journal of Pain and Symptom Management

34

5

472

479


9

2

268

272


British Medical Journal Omega: Journal of Death & Dying Chronic Respiratory Disease Archives of Internal Medicine


Exclude not appropriate design, a case study Exclude no outcome of interest


273

Rich A, Ellershaw J, Ahmad R

2001

Riesenberg D

2000

Roberts JC, Kjellstrand CM

1988

Roberts SE, Goldacre MJ

2003

Robertson C, Warrington J, Eagles JM

1993

Rocker GM, Dodek PM, Heyland DK

2008

Rosenfeld K, Rasmussen J

2003

Sampson WI

1977

Choosing death. Withdrawal from chronic dialysis without medical reason Case fatality rates after admission to hospital with stroke: Linked database study Relocation mortality in dementia: The effects of a new hospital Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: Insights from a multicentre study Palliative Care Management: A Veterans Administration Demonstration Project Dying at home

Saphir A

1999

Hospice lengths of stay dwindling

Schrag D, Xu F, Hanger M, Elkin E, Bickell NA, Bach PB Schwarz KA, Elman CS

2006

Scocco P, Rapattonoi M, Fantoni G

2006

Scott S, Pace V

2009

Seamark DA, Ryan M, Smallwood N, Gilbert J Seneff MG, Wagner DP, Wagner RP, Zimmerman JE, Knaus WA

2002

Sergi-Swinehart P

1985

Shah SH, Gambles M, Jack B, Ellershaw J

2005

Shega JW, Levin A, Hougham GW, CoxHayley D, Luchins D, Hanrahan P, Stocking C, Sachs GA

2003

Fragmentation of care for frequently hospitalized urban residents Identification of factors predictive of hospital readmissions for patients with heart failure Nursing home institutionalization: A source of eustress or distress for the elderly? The first 50 patients: a brief report on the initial findings from the Palliative Care in Dementia Project Deaths from heart failure in general practice: implications for palliative care Hospital and 1-year survival of patients admitted to intensive care units with acute exacerbation of chronic obstructive pulmonary disease Hospice home care: How to get patients home and help them stay there The Liverpool Care Pathway: Its impact on improving the care of the dying (multiple letters) [8] Palliative Excellence in Alzheimer Care Efforts (PEACE): A program description

2003

1995

Palliative care involvement in patients stopping haemodialysis Hospital care of patients with dementia

Palliative Medicine

15

6

513

514

Journal of the American Medical Association Acta Medica Scandinavica

284

1

87

89

223

2

181

186



326

7382

193

194


8

6

521

525


15

5

249

254


6

5

831

839


238

22

2405

2406

International Journal of Geriatric Psychiatry Canadian Respiratory Journal

Journal of Palliative Medicine Journal of the American Medical Association Modern healthcare

Exclude no outcome of interest Exclude no original data


29

12

40

Medical Care

44

6

560

567


Heart and Lung: Journal of Acute and Critical Care International Journal of Geriatric Psychiatry Dementia

32

2

88

99


21

3

281

287


8

3

435

441


Palliative Medicine

16

6

495

498


274

23

1852

1857


Seminars in Oncology

12

4

461

465

Age and Ageing

34

2

197

199

Exclude not appropriate study design descriptive study Exclude no original data

6

2

315

320


Journal of the American Medical Association




274

Shepperd S, Harwood D, Jenkinson C, Gray A, Vessey M, Morgan P

1998

Shyu YIL, Lee HC

2002

Silver MI

1999

Simard J

1999

Singer Y, Bachner YG, Shvartzman P, Carmel S Sit JWH, Wong TKS, Clinton M, Li LSW, Fong YM

2005

Sloane PD, Zimmerman S, Hanson L, Mitchell CM, Riedel-Leo C, Custis-Buie V Smith GE, Kokmen E, O'Brien PC

2003

Smith LN, Craig LE, Weir CJ, McAlpine CH Smith MA, Frytak JR, Liou JI, Finch MD

2008

Soler JJ, Sínchez L, Latorre M, Alamar J, Romín P, Perpií M

2001

Spitznagel MB, Tremont G, Davis JD, Foster SM

2006

Steele LL, Mills B, Hardin SR, Hussey LC

2005

Steinbach U

1992

Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA Strahan GW

2000

2004

2000

2005

1994

Randomised controlled trial comparing hospital at home care with inpatient hospital care. I: Three month follow up of health outcomes Predictors of nursing home placement and home nursing services utilization by elderly patients after hospital discharge in Taiwan Providing dialysis services for patients in a skilled nursing facility Making a positive difference in the lives of nursing home residents with Alzheimer disease: the lifestyle approach Home death - The caregivers' experiences Stroke care in the home: The impact of social support on the general health of family caregivers End-of-Life Care in Assisted Living and Related Residential Care Settings: Comparison with Nursing Homes Risk factors for nursing home placement in a population-based dementia cohort The evidence-base for stroke education in care homes Rehospitalization and survival for stroke patients in managed care and traditional medicare plans The impact of COPD on hospital resources: The specific burden of COPD patients with high rates of hospitalization Psychosocial predictors of dementia caregiver desire to institutionalize: Caregiver, care recipient, and family relationship factors The quality of life of hospice patients: Patient and provider perceptions. [References] Social networks, institutionalization, and mortality among elderly people in the United States In search of a good death: Observations of patients, families, and providers An overview of home health and hospice care patients: preliminary data from the 1993 National Home and Hospice Care Survey


316

7147

1786

1791


Journal of Advanced Nursing

38

4

398

406


Nephrology news & issues

13

10

14

19


Suppl

72



Alzheimer Disease Associated Disorders

&

13

Journal of Pain and Symptom Management Journal of Clinical Nursing

30

1

70

74

13

7

816

824


American

51

11

1587

1594

Journal of the American Geriatrics Society Nurse Education Today

48

5

519

525


28

7

829

840


Medical Care

43

9

902

910


Archivos de Bronconeumologia

37

9

375

381


Journal of Geriatric Psychiatry and Neurology

19

1

16

20

American Journal of Hospice & Palliative Medicine Journals of Gerontology

22

2

95

110

47

4

132

10

825

832


256

1

12


Annals of Internal Medicine Advance data


Exclude not advanced disease and not appropriate population (caregivers) Exclude no outcome of interest Exclude not advanced disease


275

Stuart P, Knott D

2008

Communication in end-of-life cardiac care 1: difficult issues Communication in end-of-life cardiac care 2: skills Timing of Referral to Hospice and Quality of Care: Length of Stay and Bereaved Family Members' Perceptions of the Timing of Hospice Referral Dying trajectory in the last year of life: does cancer trajectory fit other diseases? A prospective study of preferred versus actual place of death among patients referred to a palliative care home-care service Dependency in Parkinson's disease: A population-based survey in nondemented elderly subjects Factors associated with nursing-home entry for elders in Manitoba, Canada

Nursing Times

104

10

26

27


Stuart P, Knott D

2008

Nursing Times

104

11

26

27


Teno JM, Shu JE, Casarett D, Spence C, Rhodes R, Connor S

2007

34

2

120

125


Teno JM, Weitzen S, Fennell ML, Mor V

2001

4

4

457

464


Tiernan E, O'Connor M, O'Siorain L, Kearney M

2002

Irish Medical Journal

95

8

232

235


Tison F, Barberger-Gateau P, Dubroca B, Henry P, Dartigues JF

1997

Movement Disorders

12

6

910

915


Tomiak M, Berthelot JM, Guimond E, Mustard CA

2000

Journals of Gerontology Series A Biological Sciences and Medical Sciences Seminars in Dialysis

55

5

Tong EM, Nissenson AR,

2002

Dialysis in nursing homes

Trerotoli P, Bartolomeo N, Moretti AM, Serio G

2008

15

2

103

106


Monaldi Archives for Chest Disease - Pulmonary Series

69

3

94

106


Journal of the Geriatrics Society Family Practice

43

7

761

766


22

6

644

646


Zeitschrift fur Gerontologie

27

4

260

269


Gerontology

52

6

359

365


Clinical Nephrology

60

5

373

374


2002

Hospitalisation for COPD in Puglia: The role of hospital discharge database to estimate prevalence and incidence Predictors of nursing home placement in community-based long-term care Receiving care at home at end of life: Characteristics of patients receiving Hospice at Home care Medical and social care in elderly Parkinsonian patients Mobility limitations and cognitive deficits as predictors of institutionalization among community-dwelling older people Peritoneal dialysis in a nursing home: Limited survival expectations [2] Peritoneal dialysis in the nursing home

Tsuji I, Whalen S, Finucane TE

1995

Tyrer F, Exley C

2005

Vieregge P, Kortke D, Meyer-Bornsen C

1994

Von Bonsdorff M, Rantanen T, Laukkanen P, Suutama T, Heikkinen E

2006

Wang T, Izatt S, Dalglish C, Bargman J, Jassal S, Vas S, Oreopoulos D Wang T, Izatt S, Dalglish C, Jassal SV, Bargman J, Vas S, Tziviskou E, Oreopoulos D Wellard SJ, Street AF

2003

and

34

3

405

408


1999

Family issues in home-based care

International journal of nursing practice

5

3

132

136


Journal of Pain and Symptom Management


International Nephrology

American

Urology


appropriate


276

Wijkstra PJ, Van Altena R, Kraan J, Otten V, Postma DS, Koeter GH

1994

Wilkes E

1973

Williams A

2002

Williams BC, Phillips EK, Torner JC, Irvine AA

1990

Wilson DM

2000

Wilson DM, Truman CD, Thomas R, Fainsinger R, Kovacs-Burns K, Froggatt K, Justice C Wimo A, R+Ânnb+ñck E, Larsson B, Eriksson T, Eriksson IB, Thorslund M Windisch W, Petermann F, LaierGroeneveld G, Fischer S, Criee CP Winn P

2009

1999 1997 2004

Wolff JL, Kasper JD, Shore AD

2008

Wolinsky FD, Callahan CM, Fitzgerald JF, Johnson RJ Woo J, Ho SC, Lau J, Yuen YK

1992

Woodford H, Walker R

2005

Yang S, Tan KL, Devanand A, FookChong S, Eng P Zambroski CH, Moser DK, Roser LP, Heo S, Chung ML Zerzan J, Stearns S, Hanson L

2004

1994

2005 2000

Quality of life in patients with chronic obstructive pulmonary disease improves after rehabilitation at home Where to die

European Respiratory Journal

7

2

Changing geographies of care: Employing the concept of therapeutic landscapes as a framework in examining home space Predicting utilization of home health resources. Important data from routinely collected information End-of-life care preferences of Canadian senior citizens with caregiving experience The rapidly changing location of death in Canada, 1994-2004

Social Science and Medicine

1

5844

32

33

55

1

141

154


Medical care

28

5

379

391


Journal of Advanced Nursing

31

6

1416

1421


Social Science and Medicine

68

10

1752

1758


'Misplacement' of elderly people in the caring organisation: Reasons and alternatives [Quality of life in home ventilation]. [German]

Archives of Gerontology and Geriatrics Medizinische Klinik

28

3

227

237


Suppl

100


Hospice and palliative care: The last year in review Long-term care preferences among older adults: A moving target? The risk of nursing home placement and subsequent death among older adults Age and marital status are major factors associated with institutionalisation in elderly Hong Kong Chinese Emergency hospital admissions in idiopathic Parkinson's disease Acute exacerbation of COPD requiring admission to the intensive care unit Patients with heart failure who die in hospice

Annals of Long-Term Care

12

12

17

23

Journal of Aging and Social Policy Journals of Gerontology

20

2

182

200

47

4

Exclude not appropriate population Exclude not eligible population

Journal of Epidemiology and Community Health

48

3

306

309


Movement Disorders

20

9

1104

1108


9

4

543

549


American Heart Journal

149

3

558

564


Access to palliative care and hospice in nursing homes

Journal of the American Medical Association

284

19

2489

2494


Respirology

92

269

273




Exclude not original research, overview article


277

Appendix 5: Quality score for qualitative studies Table 26. 2002)

The qualitative studies’ methodological quality scores (according to the method developed by Hawker et al.

Study

Abstract

Introduction and aims

Method Sampling and data

Analysis

Ethics

Bias

Results

Transferability, generalisability

Implications and usefulness

TOTAL

Berzoff 2008 Black 2009 Boeije 2002 Bolmsjo 2001 Borgsteede 2006 Brannstrom 2006 Brown 1997 Caldwell 2007 Cassarett 2004 Chung 2009 Decourtney 2003

3

4

4

3

4

1

2

4

3

4

32

4

4

4

4

4

3

2

4

4

4

37

4

4

4

4

4

1

3

4

3

3

34

4

4

4

4

4

4

2

4

2

2

34

4

4

3

4

3

1

2

3

3

2

29

4

4

2

4

2

3

2

4

3

2

33

4

4

4

4

4

1

1

4

4

4

34

4

4

4

4

4

1

1

4

4

4

37

4

4

4

4

4

1

4

4

4

4

37

3

4

4

4

3

2

3

4

4

4

35

3

3

3

3

1

1

1

1

3

3

22


270

Study

Abstract



Analysis

Ethics

Bias

Results



TOTAL

Desharnais 2007 Edmonds 2007 Evans 2006 Evans 2006 Exley 2005 Forbes 2000 Fried 1998 Fried 1999 Frogatt 2006 Gessert 2006 Goodridge 2009 Gott 2008 Gysels 2009 Hattori 2005 Holley 2009

4

4

4

4

4

4

3

3

3

3

36

4

4

4

4

4

3

4

3

3

4

37

4

4

4

3

4

2

2

4

4

4

35

4

4

4

3

4

2

2

4

4

4

31

4

4

3

4

3

4

3

4

3

3

35

4

4

4

4

4

4

4

4

4

4

40

4

4

4

4

4

4

2

3

4

4

37

4

4

3

4

3

2

1

4

4

4

33

4

4

3

4

2

1

1

4

3

4

30

4

4

4

4

4

3

3

4

4

4

38

4

4

4

3

2

2

2

2

2

2

27

4

4

4

3

4

4

3

4

4

3

37

4

4

4

4

4

4

4

4

2

4

38

4

4

4

4

4

4

3

4

4

3

38

3

3

3

4

4

4

4

4

4

4

37


279

Study

Abstract



Analysis

Ethics

Bias

Results



TOTAL

Hughes 2005 Lee 1997 Liu 2003 McCarty 2009 McLennon 2010 Murray 2007 Namiki 2009 Nolan 2008 Parker 1999 Payne 2010 Polaschek 2002 Polaschek 2007 Polaschek 2007 Reinke 2008 Shipman 2009

4

4

4

4

4

4

4

4

3

4

39

3

3

4

4

3

2

1

4

4

4

32

2

4

3

4

2

1

1

3

4

4

28

2

3

2

3

2

1

1

2

2

3

21

3

4

4

4

2

3

1

4

4

4

33

4

4

3

3

3

2

2

4

3

4

30

4

4

4

4

4

2

1

4

4

4

35

4

4

4

4

4

4

3

3

3

3

36

4

4

3

3

3

4

2

4

3

3

33

3

4

4

4

4

2

2

4

3

4

34

2

4

3

3

2

1

3

4

3

3

28

3

2

2

2

1

1

1

3

2

2

19

3

4

3

2

3

4

1

4

2

4

30

4

4

3

4

4

4

2

2

2

4

33

4

4

4

4

3

4

3

4

3

4

37


280

Study

Abstract



Analysis

Ethics

Bias

Results



TOTAL

Small 2009 Stadjuhar 2005 Treloar 2010 Vig 2002 Waldrop 2009 Waldrop 2010 Wakunami 2009 Waterworth 2009 Wilson 2008

4

4

4

3

4

3

4

3

4

4

37

3

4

4

4

4

1

4

4

4

3

35

2

3

2

4

2

1

1

4

4

4

27

4

4

4

4

4

3

4

4

4

3

38

2

4

4

4

4

3

3

4

4

3

35

3

4

4

4

4

1

1

4

4

4

33

4

3

4

3

4

2

1

2

2

2

27

4

4

4

4

4

4

4

3

3

3

37

4

4

4

4

4

4

2

4

2

2

34

Each area was rated on a 4 point scale from 1 (very poor) to 4 (good). Minimum total score = 10; maximum total score = 40.


281

Appendix 6: Data extraction for qualitative studies Table 27.

Data Extraction Table CHF

Author/ Year/ country Brannstrom et al 2006 Sweden (130)

Theoretical perspective/ methods Phenomenologyhermeneutic Narrative interviews

Study aim

Participants

Setting

Main concepts/themes

Recommendations

The aim of the study was to illuminate the meaning of living with severe CHF in palliative advanced home care through patients’ narratives

4 patients

Home

4 main themes Being aware that one’s life hangs by a fine thread Struggling to cope with one’s unpredictable deteriorated body Struggling with isolation Being positively dependent on receiving care that facilitates life at home

Caldwell et al 2007 Canada (131)

Grounded theory qualitative study

To identify the preferences of patients with advanced HF regarding communication about their prognosis and its implications

20 patients

Heart function clinic

The following four main themes about patient preferences were identified: level of wellness – patients wanted to learn about their prognosis and its implications at a time of optimal cognitive function, and not when their capacity for EOL decision making was diminished; opportunity to be informed – patients preferred physicians to initiate discussions about prognosis at the time of diagnosis; tell the truth – there was a strong preference for physicians to disclose prognostic possibilities, treatments and outcomes associated with HF, including the possibilities of deterioration and death; and maintain hope – there was a need for truth to be balanced with hope. Hope for quality of life, symptom control and control over EOL decisions were important to participants.

Meaning of living with severe CHF in palliative advanced home care is on one hand, being aware of one’s imminent death, on the other hand, making it through the downs i.e. surviving life-threatening conditions, breed confidence in also surviving the current down. Being constructively dependent on palliative advanced home care facilitates everyday life at home The findings suggested that communication about prognosis between patients and physicians may be difficult and deferred. Preferences identified by patients offer guidance to physicians in planning and initiating dialogue about prognosis.


282

Desharnais et al 2007 USA (132)

interviews Pilot study quantitatively analysed – multivariate analysis

Gott et al 2008 UK (181)

Qualitative design Semi structured interviews

Horne and Payne 2004 UK (133)

Qualitative design Semi structured interviews

To study the effectiveness of patient physician communications regarding health care choices at the end of life. We studied communications occurring between physicians and their patients who had either terminal cancer or congestive heart failure, with less than 6 months to live. This study aimed to explore the palliative needs of older people with heart failure, including how these were consistent with the model of a ‘good death’ which underpins palliative care delivery

22 physicians and 71 of their (matched) patients

Home patientsOffice physicians

Subjects provided paired responses to questions regarding their conversations related to end-of-life care, including resources, attitudes, and preferences. We calculated the concordance of patient and physician reports about these discussions. We examined the physicians' and the patients' agreement on the patient's diagnosis, and on whether a variety of care options were discussed. Both bivariate and multivariate models were used. Results: As a whole, the concordance scores were poor; however, concordance varied across domains of issues discussed. Patients with less education had significantly lower concordance score

We have identified domains in which the physicians and patients may be least effective in discussing endof-life care options. Findings may help in designing interventions to improve communication, especially for patients with less education.

40 patients

Home

Patients reported varied preferences in relation to home death. Home death preference was regarded as an opportunity for ‘sudden’ death more than a deliberate and planned choice, while others considered it as a more pleasant place than hospital. Preferences were linked to type of death; a sudden, unaware death was preferred by some, and an ‘aware’ death more important for others. Family stress and burden was a consideration, while being with family at the end was important – some specifically feared being alone to die.

This study aimed to explore the experiences of patients with severe heart failure and identify their needs for palliative care

20 patients

Home

Patients reported difficulties in walking, extreme fatigue and problems managing daily activities. Having to rely on family, friends and neighbours was common, causing feelings of being a burden, loneliness and isolation. Patients talked about dying as well as their fears and frustrations in living with heart failure. Barriers to accessing information and social services were identified. None of these patients had been referred to specialist palliative care services.

“Open” awareness of death is problematic for this population, and concepts of autonomy in this respect were also alien to most. For many, family concerns are at least as important as personal preferences, and this needs consideration; the ‘cancer’ model should not dominate. Patients' experiences were similar to those of patients living with advanced cancer and yet they received little support. Comprehensive routine assessment of the palliative care needs of patients living with severe heart failure is recommended


283

Johnson et al 2007 USA (135)

Case study Interviews

The purpose of this case study was to explore that concern in-depth in three persons with different terminal illnesses

3 people 1 cancer 1 ALS 1 heart failure

Murray et al 2002 UK (134)

Qualitative interviews Focus groups

Aim: To compare the illness trajectories, needs, and service use of patients with cancer and those with advanced nonmalignant disease.

20 patients with inoperable lung cancer and 20 patients with advanced cardiac failure and their main informal and professional carers

Content analysis of their interviews resulted in four themes: managing the burden, spirituality, supportive relationships, and planning for the future. Themes contained specific categories of thoughts, feelings, and actions related to fear of being a burden. These themes should be explored in greater depth in future larger studies of persons with terminal illness.

Home

219 qualitative interviews were carried out. Patients with cardiac failure had a different illness trajectory from the more linear and predictable course of patients with lung cancer. Patients with cardiac failure also had less information about and poorer understanding of their condition and prognosis and were less involved in decision making. The prime concern of patients with lung cancer and their carers was facing death. Frustration, progressive losses, social isolation, and the stress of balancing and monitoring a complex medication regimen dominated the lives of patients with cardiac failure. More health and social services including financial benefits were available to those with lung cancer, although they were not always used effectively. Cardiac patients received less health, social, and palliative care services, and care was often poorly coordinated.

Patients who have terminal illness with a rapid, gradual, or unpredictable rate of decline share common concerns about being a burden on their families. Nurses and other healthcare providers should assess terminally ill patients to determine how they manage the transition from being independent to relying on family for their care. Findings from this study have suggested that patients use various strategies to make this transition easier and manage the fear of burdening their families. Strategies included accepting the support of friends and willing caregivers, maintaining spiritual beliefs, and making plans for their future care needs. Conclusions: Care for people with advanced progressive illnesses is currently prioritised by diagnosis rather than need. End of life care for patients with advanced cardiac failure and other nonmalignant diseases should be proactive and designed to meet their specific needs


284

Murray et al 2007 UK (138)

Qualitative Longitudinal interviews

Small et al 2009 UK (136)

Longitudinal qualitative

Aim to identify and compare changes in the psychological, social, and spiritual needs of people with end-stage disease during their last year of life by synthesizing data from two longitudinal, qualitative, in-depth interview studies investigating the experiences and needs of people with advanced illnesses The aim:to assess carers' views on end of life care, the circumstances of the death and bereavement experiences.

48 patients with advanced lung cancer (n = 24) and heart failure (n = 24) who gave a total of 112 in-depth interviews

Home

In lung cancer, the social trajectory mirrored physical decline, while psychological and spiritual well-being decreased together at four key transitions: diagnosis, discharge after treatment, disease progression, and the terminal stage. In advanced heart failure, social and psychological decline both tended to track the physical decline, while spiritual distress exhibited background fluctuations.

Holistic end-of-life care needs to encompass all these dimensions. An appreciation of common patterns of social, psychological, and spiritual well-being may assist clinicians as they discuss the likely course of events with patients and carers and try to minimize distress as the disease progresses.

20 interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death

Home

Findings were grouped into three time periods: prior to death; the death itself and bereavement. Most carers found discussions about end of life with their family member prior to death difficult. Dissatisfaction with the manner of the death was focused around hospital care, particularly what they believed to be futile treatments. In contrast deaths in the home were considered 'good'. Carers adopted a range of coping strategies to deal with grief including 'using their faith' and 'busying themselves' with practicalities. There was some satisfaction with services accessed during the bereavement period although only a small number had taken up counselling

The findings suggest that an absence of discussion about end of life care wishes with family members or health professionals is a barrier to advance care planning. Carers' perceptions about prioritising making the dying person comfortable can be in conflict with doctors' decisions to treat. Whilst carers report a range of strategies adopted in response to bereavement there is a need for continued support for vulnerable carers after the death of the person with HF.


285

Waterworth and Jorgensen 2009 New Zealand (137)

Longitudinal qualitative study using General Inductive approach was used. Participants were interviewed every 3 months for a 12-month period

The aims were to explore the experiences of older people living with heart failure and their transitions from independence to dependence and for some death

25 patients

Home or Residential care

The findings showed that transition was not a simple linear process with the older person moving from one phase to another; instead their experiences illustrated the complexity of transitions they faced and what helped them to manage these. The older people in this study illustrated the importance of trust in health professionals and believed they would receive good care. Their fears revealed concerns about being a burden as they deteriorate and becoming more dependent

Understanding the complex issues related to transition to dependence can provide health professionals with a framework for assessment and approaches to providing the support required.


286

Table 28. Author/ Year/ country Back et 2009 USA (141)

al

Data Extraction Table COPD Theoretical perspective/ methods Longitudinal qualitative study Semisstructured interviews

Study aim

Participants

Setting


Recommendations

Data for this analysis were drawn from a qualitative study that examined how patients, family caregivers, physicians, and nurses talk about hope in the context of providing or receiving information about a life-limiting illness

31 physicians who identified 55 patients with incurable cancer or advanced chronic obstructive pulmonary disease, 36 family caregivers, and 25 nurses

Not stated

2 themes describing abandonment of patients and their families: before death, abandonment worries related to loss of continuity between patient and physician; at the time of death or after, abandonment experiences related to lack of closure for patients and families.

The professional value of non abandonment at the end of life consists of 2 different elements: (1) providing continuity, of both expertise and the patient-physician relationship; and (2) facilitating closure of an important therapeutic relationship. Framing this professional value as continuity and closure could promote the development of interventions to improve this aspect of end-of-life care


287

Borgsteede et al 2006 Netherlands (142)

Qualitative Semi structured interviews 20 GPs 30 Patients

To explore the aspects valued by both patients and GPs in end-of-life care at home, and to reflect upon the results in the context of future developments in primary care.

20 GPs 30 Patients .

Patients’ home

4 main themes Availability of the GP for home visits and after office hours; medical competence and cooperation with other professional;, attention, and continuity of care. The aspect of attention was more prominent in the patient interviews. There was no indication of any differences in the aspects that were mentioned by (patients of) GPs who were trained in end-of-life care and their counterparts who were not trained.

The study s raises some questions about the quality of future end-oflife care at home. Developments such as out of hours services not provided by local GP’s are a challenge for general practice to find a way to both organise a modern primary care system, and to continue to provide good end-of-life care at home according to the valued aspects: availability of the GP for home visits and after office hours, medical competence, attention, and continuity of care.

Elkington et al 2004 UK (143)

Qualitative depth interviews framework analysis

To assess the symptoms experienced and their impact on patients’ lives in the last year of life of COPD, and to assess patients’ access to and contact with health services

25 Bereaved carers

19 Home 6 Research Dept

The average age of death was 77.4 years. The majority of patients died in hospital. The major symptom reported by the carers was breathlessness which impaired the deceased's mobility and contributed to their being housebound. Anxiety and panic were also associated with breathlessness. Depression was reported. Oxygen, though beneficial, was seen to impose lifestyle restrictions due to increasing dependence on it. Some patients only health care contact was through repeat prescriptions from their GP whereas three had regular follow up by a respiratory nurse specialist who linked community and secondary care. Overall, follow-up, systematic review or structured care were uncommon.

Breathlessness causes major disability to patients with COPD in the last year of life. The expertise of palliative care in treating breathlessness may be valuable in these patients many of whom lacked regular health service contact in the year before death. Patients who are housebound with high levels of morbidity require community health services. Respiratory nurse specialists were rarely involved in the patients’ care and may provide a link between the GP, the chest physician and the palliative care team.

in-


288

Exley et al 2005 UK (139)

Qualitative semi structured interviews

This study explored the views of health professionals, patients and their carers about care provided at the end of life.

Fried et al. 1998 USA (148)

Qualitative In-depth interviews Constant comparative analysis

To explore how older persons form preferences for site of medical care by investigating their perceptions of home and hospital care


Mixed methods

To describe older persons’ preferences for home or hospital as the site of terminal care and to explore potential reasons for their preferences.

Cross-sectional quantitative and qualitative interviews

50 interviews relating to 29 patients and carers – usually dyads and bereaved carers (7) 11 patients and 5 bereaved carers (cancer) and 16 patients and 2 bereaved carers 29 persons who had been hospitalized with CHF, COPD and pneumonia and receiving home care services

Communitydwelling persons, 65 years or older, recently hospitalized with CHF, COPD, or pneumonia and not selected according to life expectancy; 246 patients participated in quantitative and 29 in qualitative interviews.

Home

Differences between the care of people with cancer and those with endstage cardiorespiratory disease were found in four main areas: management and progression of disease, communication and information, health care in the community and awareness of dying. The research shows that even in PHCTs (primary health care teams) committed to the delivery of palliative care, people dying with end-stage cardiorespiratory disease are less likely than those with cancer to receive full, and easily understood, information, to be aware that they are dying or to receive district nursing care

Home and hospital

Respondents who initially thought of home care as low-intensity and frequency care were skeptical of expanded home care to treat acute illness. Regardless of their opinions of home or and hospital, all respondents preferred the site associated with greatest survival. If the sites provided equal survival, preferred the home because of freedom from constraints of the hospital and the comfort of home. Those preferring hos pital found home a lonely and frightening place to be sick. Views were shaped by social support, self-reliance, religion, past illness experiences. In quantitative interviews, 118 patients (48%) preferred terminal care in the hospital, 106 (43%) preferred home, and 22 (9%) did not know. One third changed their preference when asked about their preference in the event of a non-terminal illness. Reasons for preference identified during qualitative interviews included the desire to be with family members and concerns about burden to family and their ability to provide necessary care. Concern about long-term care needs resulted in preference for a nursing home when choice was not constrained to home and hospital.

Home, hospital, Nusing home

There is an increasing call for palliative care to be extended to all, but further work is needed to develop appropriate packages of care for those dying with conditions other than cancer.


289

Goodridge et al 2009 Canada (144)

Mixed Methods Qualitative focus groups

The aims of this study were (a) to examine critical care clinician perspectives on the quality of dying of patients with COPD and (b) to compare nurse ratings of the quality of dying and death between patients with COPD with those who died from other illnesses in critical care settings.

Three focus groups provided data describing the EOL care provided to patients with COPD dying in the intensive care unit (ICU). Patients Total sample 103 patients

Hospital

Three primary themes emerged from the qualitative data are as follows: managing difficult symptoms, questioning the appropriateness of care and establishing care priorities

Attention to the management of dyspnoea, anxiety and treatment decision-making are priority concerns when providing EOL care in the ICU to patients with COPD

Gysels & Higginson 2009 (140)

In depth interviews Analysis grounded Theory

The objective was to investigate the caring experience of carers for patients with an advanced progressive illness (chronic obstructive pulmonary disease [COPD], heart failure, cancer, or motor neuron diseases [MND]), who suffer from breathlessness.

15 carers

Home

Several key issues affected caring in a positive or a negative way. The threats to caring were uncertainty, carers' own health problems, an imploded world, negative reactions from outside, person loss, and acute exacerbations. Resources that carers drew on were acceptance, self-care, availability of support, feeling that caring is a shared responsibility with the patient, and "getting on with" caring in case of emergencies. Breathlessness was particularly challenging, and carers did not have any strategies to relieve the symptom. They were ill prepared for acute exacerbations.

Carers need to be included in opportunities for support provision in advanced illness. Negotiated involvement of a health professional could buffer the heavy responsibilities related to home care. They could provide problem-solving skills and build on the resources that carers draw on in response to what they experience as most threatening to their caring role


290

Hall et 2010 Canada (149)

al

Descriptive exploratory study

The purpose of this research was to describe the perceptions of people living with severe chronic obstructive pulmonary disease (COPD) with respect to the end of life.

6 patients

Hospital

The analysis yielded four themes that reflect the perceptions of participants with respect to the end of life, namely: living and seeing oneself decline, living and preparing to die, dying of COPD means suffocating, and dying in hospital surrounded by family and friends. What emerges from the study is that persons living with severe COPD wish to die without suffocating, in hospital, surrounded by family and friends, all the while hoping to go on living.

This study contributes to a more comprehensive understanding of the endof-life experience. It shows the importance of accompanying these persons properly towards the end of life and at the moment of dying. The study proposes a series of avenues for future research and makes recommendations for practice.

Reinke et al 2008 USA (145)

Qualitative Grounded theory

31 Physicians 55 patients 36 family members 25 Nurses

Not stated

Six themes were identified regarding participants' experiences with transitions. Themes that defined transitions among both patients with COPD and those with cancer included: new or different treatments and no more treatments available. Themes unique to patients with COPD were activity limitations due to functional decline and initiation of oxygen therapy. One theme unique to clinicians was acute exacerbation of illness or hospitalization.

Shipman 2009 UK (146)

Exploratory qualitative In-depth interviews

This study explored transitions, defined as experiences that patients and family members viewed as milestones in the evolution of their illnesses and therapies, and compare these perceptions with the perspectives of the patient's physician and nurse to provide insights about communication concerning EOL care. To explore factors that influence the use of general practice services by people with advanced COPD.

16 Patients

Home

All patients reported severe breathlessness. They contacted general practices for routine, urgent and emergency care. Contact was influenced by perceptions of ease of access; quality of relationship with their general practitioner (GP), and perceived disease severity and threat. Some patients wanted to avoid bothering the doctor or found travelling to the surgery too difficult.

This study identified differences in the meaning of transitions for patients versus clinicians and for patients with COPD versus those with cancer. These findings may offer clinicians the opportunity to provide a more patientcentred approach to communication about endof-life care by acknowledging and addressing transitions in palliative care from the perspective of the patient and family. Factors other than need influenced patterns of health service use. Expectations of difficulty in access, and poor relationships with their GP, may have delayed help-seeking in severe acute exacerbations.


291

Wilson et al 2008 Canada (147)

Ethnographic qualitative study Longitudinal indepth interviews

This study was undertaken to determine the care needs of Canadian seniors living at home with advanced chronic obstructive pulmonary disease (COPD).

12 community-dwelling seniors interviewed 3 times in their homes over an eight-month period in 2006.

Home

3 themes emerged, each with concrete care needs: (a) self-reliance and independence through adaptation, (b) stable health through maintenance, and (c) living with constraints. The predominant theme was that all participants wanted to maintain their independence. This required considerable adaptation, as well as assistance from others. Ensuring and improving assistance is important to prevent additional suffering and reduce exacerbations requiring hospitalization, a particularly important aim given the high and rising incidence of advanced COPD.

A number of other insightful findings reveal the significance of learning directly from the persons who live with chronic illnesses about their lives.


292

Table 29. Author/ Year/ country Boeije et al 2002 Netherlands (154)

Data Extraction Table Long Term Neurological Conditions Theoretical perspective/ methods Qualitative Semi structured interviews Biographical constructionconstant comparative analysis

Study aim

Participants

Setting


Recommendations

The aim of this study is to ascertain how people in the advanced stages of MS accommodate to their illness. It examines how MS induces biographical work in terms of body biographical time and conceptions of self (BBC). It then goes on to describe what this biographical work involves in terms of the four different types of work and touches on the differences between patients.

22 people with MS and 21 family caregi vers

Home

The continuity of biography is at risk since body and performance failures lead to the loss of salient aspects of self. Participants interpret MS as an allencompassing illness and emphasize the process of having to give up everything. Four case stories are described to demonstrate the complex intertwining of the biographical processes and to show the range in biographical accommodation. Some patients are capable of putting their lives back together again, while others retreat or do not consider MS a part of their lives. The unpredictable course of MS makes it impossible to give new direction to the life.

This study offers insights into the way people with advanced MS accommodate to their illness. The body of data as a whole confirms MS as a physically exhausting disease with far-reaching psychosocial consequences for patients and family members alike. A variety of examples of serious bodily failure and accompanying performance failures were reported. The loss of salient aspects of self was also illustrated. The empirical data presented illustrate some of the general and already known features of progressive illnesses, and some of the more specific points that relate to MS. As bodily failure increases, performances have to be eliminated altogether and it appears to be hard and sometimes even impossible to find new, fulfilling activities.


293

Bolmsjo et al 2001 Sweden (153)

Qualitative Interviews Descriptive analysis Kvale 1996

This study challenges the assumption that people with amyotrophic lateral sclerosis (ALS) and those who care for them at home have a similar view the disease.

8 patients 8 carers

Home and neurology clinic

By interviewing ALS patients and close relatives to ALS patients, and by comparing the quotes from the interviews, some differences between these two groups are revealed. The results of the .present study show that ALS patients and close relatives of ALS patients differ in at least five respects: they perceive their needs, and they view, judge, and evaluate the disease, as well as the process of the disease, in different ways

Furthermore, the study suggests that the patients and their close relatives should be viewed as individuals with their own preferences. Moreover, close relatives need someone in whom to confide, and caregivers have specific needs for support and information.

Edmonds et al 2007 UK (150)

Qualitative semi structured interviews

This study aimed to explore important issues for people severely affected by multiple sclerosis (MS)

23 people with MS and 17 informal carers

Home

Personal issues in relation to loss and change, particularly in terms of losses of or changes in physical abilities, including maintaining mobility, independence, relationships and social role were raised commonly in response to an open-ended question about what issues were important in living with MS. Coping with MS requires individuals to deal with the losses and changes brought about by their illness. Our study suggests that even patients who have had MS for many years and are now severely affected continue to experience loss and change.

We recommend that attention be given to emotional support which specifically addresses three main areas of dealing with loss and change for people that are severely affected physical issues, independence and relationships. Palliative care providers may have expertise in managing loss that could be useful for these patients in partnership with neurological services.

Hughes et al 2005 UK (151)

Qualitative Semi structured interviews

Aim: to understand peoples experiences and to generate ideas for developing practice and policy in MND health social and palliative care

9 people with MND and 5 carers 15 professionals

Home

The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals’ attitudes and approaches, and professionals’ knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring)

This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs


294

Nolan et al 2008 UK (152)

Mixed methods A descriptive correlational design with 16 patient–family member dyads was used. Quantitative findings and in-depth interviews with a subset of five family members following the patient's death. ( (Telephone interviews)

This study compared the preferences of patients with ALS for involving family in health care decisions at the end of life with the actual involvement reported by the family after death.

5 carers

Not stated

Eighty-seven percent of patients had issued an advance directive. Patients who would opt to make health care decisions independently (i.e., according to the patient's preferences alone) were most likely to have their families report that decisions were made in the style that the patient preferred. Those who preferred shared decision making with family or decision making that relied upon the family were more likely to have their families report that decisions were made in a style that was more independent than preferred. When interviewed in depth, some family members described shared decision making although they had reported on the survey that the patient made independent decisions.

Parker et al 1999 Australia (155)

Semi structured interviews Descriptive analysis

This study examines the potential role for palliative care services in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families

9 bereaved 4 current family members of people with advanced muscular dystropy

Home

Significant issues identified included: (i) a lack of coordination of care and access to skilled, competent carers; (ii) a lack of support for siblings; (iii) inadequate bereavement care; and (iv) limited discussion of options of ventilatory support and advance directives.

The structure of advance directives may suggest to families that independent decision making is the ideal, causing them to avoid or underreport shared decision making. Fear of family recriminations may also cause family members to avoid or underreport shared decision making. Findings from this study might be used to guide clinicians in their discussions of treatments and health care decision making with persons with ALS and their families The terminal care for individuals with muscular dystrophy and spinal muscular atrophy and their families requires improvement. Although many individuals with these conditions will die following an acute event, palliative care services may be appropriate for those who require a period of terminal care at home.


295

Table 30.

Data Extraction Table End Stage Kidney Disease

Author/ Year/ country Berzoff et al. 2007 USA (156)

Theoretical perspective/ methods Qualitative 6 focus group discussions Grounded theory

Study aim

Participants

Setting


Recommendations

To explore experiences and views of participants thoughts about the development of Renal Supportive Care Team (RSCT)—a multidisciplinary team designed to provide education and support to severely ill dialysis patients and their families. To understand daily life activities and challenges of older people living with home haemodialysis.

Patients, carers, bereaved carers and staff. 36 participants in total.

Dialysis clinics and medical facilities

Education: patients and families that both wanted more education from health care providers than they thought they had received. Support: More support was needed from staff, or peer led, and telephonic possibilities were seen as useful. Communication:There needs to be one key person for ongoing communication. This needs to be culturally competent. Continuity: the team should act as a buddy system. Advance care planning: patients and carers don’t always want to hear about EoL issues at the same time. This info needs to be repeated and written documents are not sufficient.

It is crucial that doctors, nurses, social workers, and chaplains begin to attend systematically to the care of patients and families with renal disease, as this is a population that has not received the attention that they deserve.

Namiki et al. 2009 Australia (157)

Qualitative Interviews. Thematic analysis

4 older patients,(3 men, 1 woman) with end stage kidney disease.

Home

3 themes: Accommodating haemodialysis at home Partnership (spousal and professional) Sense of self: In the present – living with ups and downs, the future – hopes and uncertainty

Qualitative. Critical interpretative methodology

To delineate the concerns of one particular group of Caucasian men living on home haemodialysis.

6 Caucasian men on self-care dialysis

Home

Patients concerns: Suffering from continuing symptoms Limitations resulting from negotiating dialysis into their lifestyle. Ongoingness and uncertainty of life on dialysis Aletered relationship between autonomy and dependency.


To describe characteristic attitudes towards their treatment regimen among a group living on home dialysis.

20 people using haemodialysis or peritoneal dialysis.

Home

Renal patients managing their condition at home is always a process of negotiation. Optimising the prescription may affect their usual activities in ways that reduce their QoL. Modifying some aspects of the treatment regimen within the limits they know, are possible, may enable them to maintain their normal lifestyle.

A positive outlook on life in the present enabled participants to look to their future with purpose and hope. Outstanding systems of partnership significantly facilitated this view. Experience of other ethnicities and women living on dialysis may be significantly different. The nursing role should include attention to the patients experience of living on dialysis, alongside their technical tasks. Nurses can support clients as they manage their treatment themselves.

Polaschek 2003 New Zealand (158)



296



To describe characteristic attitudes towards their treatment regimen among a group living on home dialysis.

20 people using haemodialysis or peritoneal dialysis.

Home

During the initial period of adjustment to treatment many participants learned their need for treatment by experimenting with the therapeutic prescription. They then used their knowledge of the therapy to alter their treatment regime to maintain their normal lifestyle. Having modified their therapeutic prescription, participants’ motivation to continue meeting the demands of treatment was influenced by their individual life situation, including relationships, work and personal attitudes towards life.

Understanding client attitudes towards therapy enables nurses to support people living on dialysis better. Through enhancing their relationships with clients, nurses can assume a key role in service to people living with chronic conditions.


297

Table 31.

Data Extraction Table Older People, including stroke and dementia

Author/ Theoretical Year/ perspective/ country methods PLACE OF CARE

Study aim

Participants

Setting


Recommendations

Brown et al. 1997 Canada (159)

Qualitative 7 focus groups

43 seniors with chronic health problems, carers (most spouses), health professionals

3 primary care areas: medical, home-based, public health

Four main themes characterized the barriers and facilitators to seniors' independence: attitudes and attributes, service accessibility, communication and coordination, and continuity of care.

Health providers need to communicate better, to foster more positive attitudes toward aging, and to participate in refining service access, coordination of services, and continuity of care.

Evans et al. 2006 USA (164)

Qualitative Semi-structured interviews

Patients transferred because of an acute medical event, an uncontrolled symptom, imminent death, or inability to provide needed care safely at home. Although all caregivers expressed a strong preference for care at home, other concerns such as pain and symptom control, safety, and quality and quantity of life became more important with time. We found significant variation in specific preferences regarding care and site of death. Satisfaction with care at the transfer facilities was determined by clarifying goals of care, following treatment preferences, providing personalized care, and the patient’s environment. Managers held diverse understandings regarding the meaning of EoL care. The features of the residents’ conditions and the dying that they experience requires a different way to conceptualise EoL care.

Experiences can be improved by treating patients and carers as individuals, exploring and respecting treatment preferences and creating a pleasant physical environment.

Postal survey of care home managers in one English county. Content analysis of open questions on managers’ understanding of EoL care, priorities for future

Caregivers of deceased hospice patients who transferred to an acute care hospital, a freestanding inpatient hospice facility, or a nursing home while enrolled in hospice and died Managers of 261 care homes

Home hospice to inpatient hospice, hospital or nursing home

Frogatt & Payne 2006 UK (173)

This study aimed to identify barriers and facilitators to independence as experienced by seniors with chronic health problems as they interacted with medical, home-based, and public health services. (1) the reasons for hospitalization, (2) preferences for site of care of patients who are hospitalized, and (3) patients’ and caregivers’ experiences in facilities upon transfer. To describe the provision of EoL care for older people residing in care homes from the perspective of care home managers.

Care homes

A longer term perspective is required. Also ways to involve residents, relatives, and staff in the development of care at EoL. There is the need for advance care planning, even before entry.


298

developments Gessert al. 2006 USA (166)

et

Holley et al. 2009 USA (167)

Qualitative 8 focus groups

Mixed-methods Chart review of 74 patients, telephone (22 carers) and face to face (13 carers) interviews, Quantitative analyses between patients who died in 1st year and those who did not., between patients with dementia and without, who died in the 1st year.

To explore the goals, beliefs, and values used by family members in making decisions on behalf of cognitively impaired, institutionalized elders near the end of life and to identify commonalties and differences between the values invoked by families in rural and urban counties in Minnesota. To assess carers´ expectations of and satisfaction with an urban, home-based geriatrics PC programme (PATCH)

38 family members of nursing home residents with severe cognitive impairment

Nursing home

Most rural participants: acceptance of death and few conditions on death, beyond their hope that it would be quick and peaceful. Urban respondents: a wider range of attitudes toward death, from unambiguous acceptance of immediate death to evident discomfort with welcoming death under any circumstances. These rural-urban differences had practical implications. Rural respondents were much less likely to endorse interventions that would impede death. Rural respondents tended to express confidence in natural forces; death was seen as neutral or beneficient. Urban respondents: resistance to the approach of death. Some insisted on aggressive medical care in advanced dementia. Uncertainty in decision making

Rural views might be useful in our broad cultural efforts to improve care at the end of life. These may be the result of shared life experiences.

Carers of patients >65, enrolled in Medicare Part B, homebound, limited life expectancy.

Home-based geriatrics PC programme

Patients average age: 85. 86% female, 82% African American. The majority had between 2 and 4 secondary diagnoses. 55% of caregivers were daughters. Carers providing care for patient with dementia was longer than for patients without (80 vs 18 mths), were less likely to work outside the home (35%vs 36 %). More than 2/3 died at home or in in-patient hospice. Amount of care needed and satisfaction was high.

Early referral to home care programmes so that transitions are made smooth and continuity of care is improved. Continuation of relationship between between PATCH and patients admitted to long term care. Ensure programme sustainability.

Themes: Preferences about care setting, access to practitioner with expertise in PC, challenges with multiple transitions in care, to EoL care and anticipating death.

Qualitative: content analysis.


299

McCarty & Volicer 2009 USA (168)

Mixed methods: Questionnaire hospice characteristics, criteria for admission, Services provided, sources of referrals, and outreach used. Open interviews Content analysis

To investigate what promotes and prevents involvement of individuals with dementia in a hospice program.

Convenience sample of hospice organizations 3nurses, 6 social workers, 4 hospice directors

Hospice

Facilitators for utilization of hospice for Alzheimers patients: In-patient or residential hospice facility. Services for patients not eligible by Medicare criteria (Bridge, Transitions, PC programs) Barriers: Physician prognosis, lack of recognition of dementia as terminal illness, finances, communication difficulties, institutional barriers, eg when patients are transferred to hospitals, nursing staff may be resistant. Due to misunderstanding of hospice purpose.

Adverse effect of Medicare regulations may be decreased and hospice access improved by: different eligibility criteria. Alternative programs for patients not eligible for Medicare, more intensive education.

Payne al.2010 UK (175)


To identify patients’ and family members’ experiences of acute stroke and their preferences for endof-life care, and identify barriers and opportunities to improve care.

28 patients stroke

2 general hospitals

The findings demonstrate the importance of improving communication between patient, family and health professionals for patients with stroke in UK hospitals.

Exploratory retrospective study. Mixed methods: Free interview and semistructured questionnaire. Analysis: descriptive statistics and identification of themes. PREFERENCES FOR CARE

To identify the major factors which make care for dementia patients at home feasible.

Carers of 14 patients interviewed post death

Home

Communication between patients, family and health professionals was central to a positive experience of stroke care. Honesty and clarity of information was required, even where prognoses were bleak or uncertain. Patients and family attached as much importance to the style of communication as to the substance. Where the focus had shifted from active to passive support, both wished to be included in dialogue with professionals. Where patients were thought to be dying, family was keen to ensure death was peaceful and dignified. Families reported few opportunities for engagement in any form of choice over place or style of EoL care. No family reported being offered the possibility of the patient dying at home. Factors for success: Right equipment Expertise about medication, food, social care needs. Understanding and support for funding care commissioning and informal care.

Black et al. 2009

1. To determine how surrogate decision

34 surrogate decision makers for

Nursing homes.

Most surrogates reported that patients had previously completed an advance directive (59%), discussed preferences for EoL care (56%), or done

Health care providers may be able to assist patients and

et

Treloar et al. 2010 UK (176)

Qualitative Semistructured

with

A specialist team is required. Skilled support in a wide range of support methods to be coordinated by someone who understands the issues. Hospital death could be averted by specialist out-ofhours advice.


300

USA (161)

interviews. Content analysis.

makers for nursing home patients with advanced dementia developed understanding of patients’ treatment preferences, what those preferences were, and how confidently the surrogates held their beliefs about patients’ wishes for EOL care. 2. To identify surrogatereported factors that either impeded or motivated individuals to express their treatment preferences.

hospice-eligible nursing home patients with dementia.


Qualitative In-depth interviews Constant comparative analysis

To explore how older persons form preferences for site of medical care by investigating their perceptions of home and hospital care

29 persons who had been hospitalized with CHF, COPD and pneumonia and receiving home care services

both (38%). Catalysts for and barriers to completing an advance directive or having EoL care discussions included factors that were both intrinsic and extrinsic to the patient. The most commonly reported wish for EoL care was to not be kept alive by “machines” or “extraordinary measures.”

Home and hospital

Respondents who initially thought of home care as low-intensity and frequency care were skeptical of expanded home care to treat acute illness. Regardless of their opinions of home or and hospital, all respondents preferred the site associated with greatest survival. If the sites provided equal survival, preferred the home because of freedom from constraints of the hospital and the comfort of home. Those preferring hos pital found home a lonely and frightening place to be sick. Views were shaped by social support, self-reliance, religion, past illness experiences.

families by normalizing discussions of dying, encouraging advance care planning, helping them identify goals for EOL care, and providing information to support treatment decisions consistent with patients’ wishes. Finding opportune moments to raise EoL issues early on. Future efforts to improve expression of EoL preferences for EoL care might first examine how patients would like to communicate them (AD,/discussion). Educational interventions can increase discussions. Those tailored to individual is more successful than one general approach. Respect for those who do not wish to discuss preferences. Because survival appears to be the most important determinant of preference, home treatment of acute illness is a viable alternative only if it provides outcomes equivalent to those of hospitalisation. Perceptions that home care only can be a low-intensity service may limit preferences for home treatment. When expected outcomes at the 2 sites are similar, the challenge to the health care system will be incorporating pt preference into decisions about the


301

appropriate site of care. Fried et al. 1999 USA (76)

Mixed methods

Hattori et al. 2005 Japan (177)

Qualitative Descriptive study. Semi-structured interviews

To understand the wishes of the elderly in Japan concerning their EoL care: Wishes for care Preferences for information about their illness Meaning of death

Vig et 2002 USA (170)

Descriptive qualitative study. Semi-structured interviews

To explore the attitudes of older adults with medical illness about the end of life, and to investigate whether current values could be extended to endof-life preferences.

16 older men and women with non terminal heart disease and cancer.


To describe hospice enrolment from the perspective of bereaved family members and to identify information

100 family members of 100 patients who died in hospice

al.

Cross-sectional quantitative and qualitative interviews

To describe older persons’ preferences for home or hospital as the site of terminal care and to explore potential reasons for their preferences.

Communitydwelling persons, 65 years or older, recently hospitalized with CHF, COPD, or pneumonia and not selected according to life expectancy; 246 patients participated in quantitative and 29 in qualitative interviews. Elderly patients

Home, hospital, Nusing home

In quantitative interviews, 118 patients (48%) preferred terminal care in the hospital, 106 (43%) preferred home, and 22 (9%) did not know. One third changed their preference when asked about their preference in the event of a non-terminal illness. Reasons for preference identified during qualitative interviews included the desire to be with family members and concerns about burden to family and their ability to provide necessary care. Concern about long-term care needs resulted in preference for a nursing home when choice was not constrained to home and hospital.

The current debate about home versus hospital as the ideal site for end-of-life care may ignore an important issue to older persons—namely, the care of disabilities that precede death.

17 elderly patients hospitalized in a university hospital, and 13 from a university affiliated outpatient facility . Patients (all men) attending two universityaffiliated geriatric clinics

Wishes for care were influenced by a variety of factors: Family, health condition, personal experience, relationship with physician, concept of life and death. Wishes varied during the interview. The wish to die in comfort remained stable.

PC providers need to understand: Patients wishes for EoL care may be dependent on their ability to make decisions, that wishes change and family considerations are a strong influence.

Patients with heart disease and cancer provided similar responses. Participants’ views about good deaths, bad deaths, and EoL scenarios were heterogeneous. Each participant voiced a unique combination of themes in describing good and bad deaths. Participants provided differing explanations for why given themes contributed to good deaths. Currently valued aspects of life were not easily translated into end-of-life preferences.

Communication is important about EoL care preferences. Not only questions about general values need to be asked, also about EoL choices and the reasons for these.

Hospice

Almost all family members (n592) and patients (n571) knew about hospice before the patient’s illness. Almost half the patients (n544) were not involved at all in the hospice enrolment decision. The patient’s physician (n551) or the patient or family (n534) initiated most hospice discussions, but patients and families usually obtained

By providing more information about hospice earlier in the illness course, clinicians may be able to facilitate more-informed and more-timely decisions about

TRANSITIONS Cassarett et al. 2004 USA (162)


302

about hospice that would encourage patients and families to enroll sooner.

Chung et al. 2009 (163) USA

Qualitative study Semi-structured interviews: 1 with patient 10 with family 9 with patient and family

Forbes et al. 2000 USA (165)

Descriptive qualitative study Four focus group discussions. Content analysis.

Lee et 1997 UK (174)

Pre-relocation questionnaires to seek the views of carers and staff. Questionnaires sent out 3 months after relocation. Meetings with carers and staff.

al.

(1) To assess the level of hospice knowledge on the part of patients and/or family members; (2) investigating the decision process of hospice enrollment, range of services used, and transitions in the place of hospice care by patients’/family members’ level of knowledge. To describe families’ decision-making processes, both cognitive and affective, regarding EoL treatments for nursing home residents with moderately severe to very severe dementia. To minimize the negative effects in the process of relocation and, to review care procedures, identifying and implementing good practice in the new accommodation.

20 minority elderly hospice patients

Urban nonprofit Medicarecertified hospice.

28 family members of residents with moderately severe to severe dementia

4 nursing homes in a Midwestern American city selected on the basis of their racial and economic diversity of residents Relocation of a group of confused elderly people from a long stay psychiatric ward and a similar client group attending a day

20 relatives of severe dementia patients, 17 staff.

information about hospice from a hospice representative (n575) rather than from the patient’s physician (n522). Family members identified several kinds of information about hospice that were particularly helpful in deciding whether to enrol and described several aspects of hospice that they wished they had known about sooner. Patients were not involved in decisions due to cognitive impairment. Half the sample had no/little knowledge of hospice at the time of hospice enrollment decision. The remaining half of the sample had some knowledge or insider knowledge. Those with no prior knowledge fit the profile of the traditional hospice population: cancer and kidney-failure and likely to forgo treatment. Those with some prior knowledge: did not fit the profile: conditions with less clear prognoses and time until death. The highest level of knowledge (through carers’ health care occupations) influences hospice care after enrollment.

hospice enrolment.

Emotional effect, insult-to-life story, two faces of death, values and goals regarding end-of-life treatments,and the unrecognized trajectory of dying. Family members made decisions in an emotional climate of overwhelming burden and guilt, because their loved one’s life had been robbed of personhood, the changes associated with decline from a dementia-related illness were unrecognized as part of a trajectory of dying, death was both a tragedy and a blessing.

Family members need assistance in processing difficult and painful emotions, understanding the trajectory of disease, what decisions might impede a natural death, and comfort or palliative care options.

Relocation of services affects not only patients and staff, it also has implications for the education of staff and managers. Without appropriate preparation for relocation, the potential negative effects for older patients could be life threatening.

Planners involved with hospital closure programmes must involve professionals. Re-provision of services should mean an opportunity to evaluate practice and to make changes to improve the service. Staff professionalism needs to be supported by an inservice training agenda for those nursing staff who are

The policy of a mixed economy of welfare also implies working in a different culture with different values to which nursing staff would need to adapt.

To focus future research on how to achieve an optimal knowledge-building strategy about hospice care.


303

hospital, to a purpose built nursing home

going to be working in a very different culture of health care. Inclusion of budgetary and health care funding elements in nurse education.

Liu & Tinker 2003 Taiwan (182)

Questionnaires on issues about institutional placement. Open questions descriptively presented

To explore the decision-making process of elderly people who entered nursing homes and that of their carers/key families in Taiwan. It traces the admission process, factors influencing perceptions of alternatives and extent of involvement of the carers/key families and the elderly people.

235 elderly people in nursing homes 265 primary carers/ key families providing assistance to older relatives

Transition from home to long term care nursing homes

Most elderly people in Taiwan are cared for in their own homes by their families but, in some circumstances, entry to a nursing home seemed inevitable. The decisions were taken mainly within a family context. The adult children of the elderly people, carers/key families’ preferences and the availability of carers influenced the decision. Apart from the important need factors of elders, families’ views about alternatives to nursing homes were significantly influenced by their preferences. There was anxiety about the care provided and QoL in nursing homes. Some people were told their permanent admission was only temporary.

There needs to be greater opportunities for trainee nurses to undertake practice placements in the independent sectors of health care. A mandatory policy to provide `preparatory programme' for relocation prior to relocation plans is needed. The family setting needs to be a target for intervention (eg carer allowance). Governments should pay more attention to community care. There should be development of new care environments encouraging independence.

• What were the patients’ and carers’/key families’ role in the decision making process? Who was the


304

McLennon et al. 2010 USA (169)

Mixed methods Semi-structured interviews with open-ended questions and content analysis. Descriptive statistics

Stadjuhar et al. 2005 Canada (180)

Ethnographic study Participant observation, interviews, focus group discussions Analysis: constant comparative Qualitative Focus group discussions. Semi-structured interviews with

Wakunami et al. 2009 Japan (178)

most influential person? • What were the factors which influenced their perceptions of alternatives to nursing home entry? 1. To identify common themes from interviews with caregivers who participated in an intervention study to assist caregivers of relatives with Alzheimers and Parkinsons who withdrew because they decided to institutionalize their relative and 2. to describe the characteristics of the sample that withdrew, including any acute event data about crisis events. To describe, from the perspectives of family caregivers and health care providers, the variations in and factors influencing family members' decisions for palliative home care. To develop an understanding of the process by which families accept the elderly with severe

11 carers of 9 patients with Alzheimers and 2 with Parkinsons disease

Transition from home to institution in 10 cases, from home to other carer at home in 1 case.

3-4 months before institutionalization carers knew that they were not able to continue caring for their relatives at home. The most frequent reason was serious health events. There were more institutionalizations for the Alzheimers group, indicating that caring for Alzheimers is more difficult than for Parkinsons Disease.

When carers express the need for change in place of care, it may be a signal for immediate assessment and referral to appropriate resources for assistance.

13 family members providing care, 47 bereaved family members, 25 health professionals

Home-based palliative care

Decision making process was unique for each family member, but commonalities: Some caregivers made uninformed decisions, giving little consideration to the implications of their decisions. Others made indifferent decisions, reluctantly agreeing to provide care at home, and still others negotiated decisions for home care with the dying person. Decisions were influenced by: 1. fulfilling a promise to the patient to be cared for at home, 2.desiring to maintain a 'normal family life', 3.previous negative encounters with institutional care.

Better preparation of caregivers for their role, enhance their choice in the decision-making process, improve care for the dying in hospital, and consider the development of alternate options for care.

23 family members interested in caring for frail relatives in two sets of male and female focus

Focus groups in community centers. Interviews in homes.

Categories: (i) family affection with wishes for continued survival; (ii) vacillation of desire for death with dignity; (iii) family members’ hierarchy; (iv) awareness that others may make different decisions; (v) family members’ discussion overcoming discordance; (vi) satisfaction with physicians’ explanations; (vii) impressions of life-sustaining measures; (viii) entrusting

Collaborative surrogate decision making by families and physicians.


305

family members who had made important medical decisions.

brain damage as near death

Waldrop & Kirkendall 2010 USA (171)

Qualitative Descriptive study In-depth interviews with and focus groups

Waldrop Rinfrette 2009 USA (172)

Mixed methods Ethnography of team meetings informed the development of questions for focus groups and written follow-up surveys

To explore the interrelationship between location (rural or urban) and the type of agency (hospice or CHHAhospice) and to describe how it influences the experiences of older persons and their carers at the EoL. Hospice professionals views on the appropriate timing for and communication about hospice.

&

groups 10participants (5 men and 5 women) who made important medical decisions were interviewed separately. 3 were bereaved. the directors of CCHA and hospice agencies, key staff constituents (nurses, social workers)

53 hospice professionals.

important decisions to hospital physicians; (ix) significance of family members’ previous experiences; (x) patient’s age; and (xi) duration of medical treatment.

Home-based care

Themes: Rural-Urban Differences (geographic challenges, market forces, and programming issues) and EoL Care Issues (macrosocial, mezzosocial, and microsocial factors). Implications for social work practice.

Importance of: policy-guided practice environmental factors interdisciplinary and interagency collaboration Advance Care Planning

Hospice

Timely admissions are situation-specific and involve a terminal prognosis, terminal decline, and a mutual understanding.

Hospice needs to be available earlier in the illness trajectory, this will ease transition. Additional education for health professionals about how and when to address EoL issues. Training for health professionals is also important in family dynamics.


306


299

a systematic literature review - NIHR

a systematic literature review - NIHR

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