Understanding End-Of-Life Admissions

315 Pages·2017·4.53 MB·English

by  Sarah Elizabeth Hoare

Understanding end-of-life admissions: an
interview study of patients admitted to a
large English hospital shortly before death

Sarah Elizabeth Hoare

Trinity Hall
December 2016

This dissertation is submitted for the degree of Doctor of Philosophy
© Sarah Hoare 2018

Preface

“So, you know, I’m not that familiar with people
dying but it seems to me that most people don’t
die like Old King Cole on the television, you know,
with the family around looking sort of sad. They
usually die from something that’s hurting or
affecting them and makes them need specialist
care. So I would think things like hospices and if
necessary hospitals are probably where they ought
to be but, you know, when I die I’ll let you know.”
(33,10)

Preface
Contents
Contents ....................................................................................................................... iii
Figures ........................................................................................................................... xi
Tables ............................................................................................................................ xi
Boxes ............................................................................................................................. xi
Declaration .................................................................................................................. xii
Abstract ...................................................................................................................... xiv
Acknowledgements ................................................................................................... xvi
Chapter 1 Hospital admissions at the end of life ................................................. 2
1 Introduction................................................................................................................................ 2
2 What are end-of-life admissions ............................................................................................ 2
2.1 The problem .......................................................................................................................................... 2
2.2 Defining admissions .............................................................................................................................. 3
3 Why study admissions ............................................................................................................. 3
4 How to study admissions ........................................................................................................ 4
4.1 Sociologically.......................................................................................................................................... 4
The ACE Study ................................................................................................................................................... 6
4.2 Definitions .............................................................................................................................................. 6
Boundaries ........................................................................................................................................................... 7
4.3 Research objectives and questions ................................................................................................... 7
5 Overview of the thesis ............................................................................................................. 8
Chapter 2 Reviewing preferences for home death ............................................ 11
1 Do dying patients want to die at home? ............................................................................ 11
2 Reviewing patient preferences ............................................................................................. 12
2.1 Review history .................................................................................................................................... 13
2.2 Inclusion and exclusion criteria ....................................................................................................... 14
2.3 Selection and evaluation of studies ................................................................................................ 15
2.4 Data Synthesis ..................................................................................................................................... 17
2.5 Reporting data ..................................................................................................................................... 18
3 Results ....................................................................................................................................... 18
3.1 Overview of the study data ............................................................................................................. 18
3.2 Preferences for place of death by participant condition ........................................................... 20
3.3 Preferences for place of death by participant role ..................................................................... 20
3.4 Preferences for place of death by where participants were asked ........................................ 23
3.5 Trends ................................................................................................................................................... 25
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Preface
4 Discussion ................................................................................................................................. 25
4.1 Missing preferences ........................................................................................................................... 25
4.2 Understanding difference in preference for place of death ..................................................... 26
4.3 Limitations ............................................................................................................................................ 27
5 Conclusion ................................................................................................................................ 28
Chapter 3 The not-good place of death: hospital in UK end-of-life care policy
30
1 End-of-life care policy ............................................................................................................ 30
1.1 Pre Strategy: Anywhere but hospital ............................................................................................. 30
1.1.1 The hospital ...................................................................................................................................................... 30
1.1.2 The hospice ...................................................................................................................................................... 32
1.2 End of Life Care Strategy: Home and choices ............................................................................. 34
1.2.1 The End of Life Care Strategy Pathway .................................................................................................... 34
1.2.2 Choosing home ............................................................................................................................................... 35
1.3 Post Strategy: the removal of hospital .......................................................................................... 37
1.3.1 Transforming hospitals .................................................................................................................................. 37
1.3.2 NICE Quality standard for EOLC .............................................................................................................. 37
1.3.3 LCP ‘scandal’ .................................................................................................................................................... 38
1.3.4 Health and Social Care Act 2012 ............................................................................................................... 38
1.3.5 Actions for End of Life Care: 2014-16 ...................................................................................................... 39
1.3.6 Independent review of choice at the end of life ..................................................................................... 39
1.3.7 Ambitions for Palliative and End of Life Care.......................................................................................... 40
1.3.8 NCPC: Getting Serious About Prevention .............................................................................................. 42
1.3.9 NICE guidelines: care in the last few days of life .................................................................................... 42
1.3.10 ‘Our Commitment to you for end of life care’ ....................................................................................... 42
1.4 Care today ........................................................................................................................................... 43
1.4.1 Social care ......................................................................................................................................................... 43
1.4.2 Health care ....................................................................................................................................................... 44
1.4.3 Trends in place of death ............................................................................................................................... 44
2 Hospital admissions ................................................................................................................ 46
2.1 Background trends ............................................................................................................................. 47
2.1.1 More old, dying longer and alone ............................................................................................................... 47
2.1.2 Generally inappropriate: ‘emergency’ hospital admissions .................................................................. 50
2.2 Admissions are ‘inappropriate’, ‘undesirable’, expensive.......................................................... 52
2.2.1 The problem of hospital................................................................................................................................ 52
2.2.2 The popularity of home ................................................................................................................................ 54
2.2.3 The cost of admissions .................................................................................................................................. 54
2.3 ‘Preventable’ and ‘Avoidable’ admissions ..................................................................................... 55
2.3.1 Why admissions occur .................................................................................................................................. 55
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Preface
2.3.2 Resolutions to ‘inappropriate’ hospital admissions................................................................................ 57
2.4 Always ‘inappropriate’? ..................................................................................................................... 58
Why none of these resolutions are enough ................................................................................... 59
3 Conclusion ................................................................................................................................ 59
Chapter 4 The ACE Study: methodological and theoretical reflections ........ 61
1 The hospital Admissions Close to the End of life (ACE) study .................................... 61
1.1 Study aims ............................................................................................................................................ 61
1.1.1 The history of ACE ........................................................................................................................................ 62
1.2 The Use of ACE .................................................................................................................................. 62
1.3 The design of the ACE study ........................................................................................................... 63
1.3.1 Case study ........................................................................................................................................................ 63
1.3.2 Retrospective .................................................................................................................................................. 63
1.3.3 Meadowbridge hospital and the surrounding area................................................................................. 64
1.4 Patients .................................................................................................................................................. 64
1.4.1 Three days ........................................................................................................................................................ 64
1.4.2 Age ..................................................................................................................................................................... 65
1.4.3 The disease focus ........................................................................................................................................... 65
Cancer ...................................................................................................................................................... 66
Dementia ................................................................................................................................................. 66
COPD ...................................................................................................................................................... 67
1.5 Data collection .................................................................................................................................... 67
1.5.1 Case-patients ................................................................................................................................................... 67
1.5.2 Participants ....................................................................................................................................................... 70
Recruitment strategy ............................................................................................................................ 71
Missing voices ......................................................................................................................................... 72
1.6 Interviews ............................................................................................................................................. 73
1.6.1 Telephone interviews .................................................................................................................................... 74
1.6.2 Recording ......................................................................................................................................................... 74
1.6.3 After the interview ......................................................................................................................................... 75
1.6.4 Myself as interviewer ..................................................................................................................................... 75
1.6.5 Transcription ................................................................................................................................................... 76
1.7 Ethical issues ........................................................................................................................................ 77
1.7.1 Approvals .......................................................................................................................................................... 77
1.7.2 Consent ............................................................................................................................................................. 77
1.7.3 Anonymity ........................................................................................................................................................ 77
1.7.4 Participant codes ............................................................................................................................................ 78
1.7.5 End-of-life memories ..................................................................................................................................... 79
1.8 Summary ............................................................................................................................................... 79
2 Analysing the ACE dataset .................................................................................................... 79
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Preface
2.1 Reading.................................................................................................................................................. 79
2.2 Theorising interviews ........................................................................................................................ 81
2.3 Structuration theory .......................................................................................................................... 82
2.3.1 Everyday sociologists ..................................................................................................................................... 82
Making it up: Recall ............................................................................................................................... 83
Justifying behaviour: post-hoc rationalisation ................................................................................. 84
Motivated talk: Interview inaccuracies ............................................................................................. 85
Accounting for admissions .................................................................................................................. 86
2.4 Analysis ................................................................................................................................................. 87
2.4.1 ‘Secondary’ analysis ........................................................................................................................................ 87
2.4.2 The analytic process ...................................................................................................................................... 88
2.5 Coding ................................................................................................................................................... 89
2.5.1 Subjectivity ........................................................................................................................................................ 90
2.5.2 Speech................................................................................................................................................................ 90
2.5.3 Mapping ............................................................................................................................................................. 91
2.7 Paper-clipping ...................................................................................................................................... 92
2.8 Writing .................................................................................................................................................. 92
2.8.1 Quotations ....................................................................................................................................................... 93
2.8.2 Sociological themes ........................................................................................................................................ 95
2.8.3 Summary ........................................................................................................................................................... 96
3 Conclusion ................................................................................................................................ 96
Chapter 5 Inappropriately admitted? The role of the hospital ....................... 98
1 Accepting patients .................................................................................................................. 98
1.1 Discharge not admission................................................................................................................... 99
1.2 Hospital responsibility ..................................................................................................................... 100
2 The undesirability of dying in hospital .............................................................................. 102
2.1 End-of life care patients should not be in hospital ................................................................... 103
2.2 Hospital costs .................................................................................................................................... 105
2.3 Hospital: A miserably lonely place to die ................................................................................... 107
2.4 Conclusion: Inevitable admissions, treatment and a poor site of death ............................ 108
3 Welcome patients ................................................................................................................. 108
3.1 Acute needs ....................................................................................................................................... 108
3.2 ‘Survivable’ ......................................................................................................................................... 110
4 Hospital as a place of safety ................................................................................................ 112
4.1 An obligation to provide care ....................................................................................................... 112
4.2 An emergency resource ................................................................................................................. 113
5 The benefit of dying in hospital .......................................................................................... 114
5.1 For the patient .................................................................................................................................. 114
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5.2 Benefits to the family ....................................................................................................................... 115
5.3 Carer support ................................................................................................................................... 115
5.4 Messy body and memories ............................................................................................................. 116
5.5 Being poorly: the desirability of home and hospital ................................................................. 117
6 A place for acute care and safety: reframing ‘inappropriate’....................................... 119
6.1 Appropriate or inappropriate admissions? ................................................................................. 120
7 Conclusion .............................................................................................................................. 121
Chapter 6 Community dying: home, carers, and conversations ................... 124
1 Being cared for at home ...................................................................................................... 124
1.1 Home is nice ...................................................................................................................................... 125
1.2 Dying at home can be difficult ....................................................................................................... 126
1.2.1 ‘An unsuitable environment’: space, equipment and care .................................................................. 126
1.2.2 Care ................................................................................................................................................................. 128
1.3 Family carers at home ..................................................................................................................... 129
1.3.1 Physically caring ............................................................................................................................................. 129
1.3.2 Symptoms and intimate care: the difficulty of home care .................................................................. 130
1.4 Dying at home was possible .......................................................................................................... 131
1.4.1 Feeling at home, at home ........................................................................................................................... 132
1.4.2 The desirability of home ............................................................................................................................. 134
1.4.3 Revisiting preferences ................................................................................................................................. 134
2 Caring for the case-patients ............................................................................................... 136
2.1 Comprehensive family care ............................................................................................................ 136
2.2 The capability of family carers ....................................................................................................... 140
2.2.1 The case of Mrs Thompson: when caring fails ...................................................................................... 140
2.2.2 Knowledgeable carers ................................................................................................................................. 142
2.2.3 Conclusion ..................................................................................................................................................... 144
3 Preventing an admission ...................................................................................................... 144
3.1 Talking about dying .......................................................................................................................... 144
3.1.1 Timing talk ...................................................................................................................................................... 145
3.1.2 Involving others in talk ................................................................................................................................ 146
3.1.3 Talk of blame ................................................................................................................................................. 147
3.1.4 Conclusion ........................................................................................... Error! Bookmark not defined.
3.2 Planning and dying ............................................................................................................................ 148
3.2.1 The plan in practice ..................................................................................................................................... 149
3.2.2 Plans and acute needs .................................................................................................................................. 150
3.2.3 Superseded plans .......................................................................................................................................... 151
3.2.4 Sharing plans .................................................................................................................................................. 151
3.2.5 Services and plans ......................................................................................................................................... 152
3.2.6 When planning would not work ............................................................................................................... 153
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Preface
3.2.7 Conclusion ......................................................................................................................................................154
3.3 Putting the plan into place .............................................................................................................. 155
3.3.1 Nursing care ...................................................................................................................................................155
3.3.2 Arranging services ........................................................................................................................................157
3.3.3 Viability of planning.......................................................................................................................................157
4 Conclusion .............................................................................................................................. 158
Chapter 7 Gatekeepers to hospital: the ambulance service .......................... 162
1 Limited autonomy ................................................................................................................. 162
1.1 The control room ............................................................................................................................ 165
1.2 Recorded decision-making ............................................................................................................. 166
1.3 Seeking support ................................................................................................................................ 168
1.4 Solving the problem – more rules ................................................................................................ 170
1.5 Conclusion ......................................................................................................................................... 170
2 Just a ‘transfer medium’ ....................................................................................................... 171
2.1 ‘Not dead yet’ ................................................................................................................................... 171
2.1.1 Treatable .........................................................................................................................................................171
2.1.2 Time-critical ...................................................................................................................................................173
2.2 Abandoning patients ........................................................................................................................ 174
2.2.1 Ambulance service history .........................................................................................................................176
2.2.2 End-of-life care education ...........................................................................................................................177
2.2.3 Conclusion ......................................................................................................................................................178
3 The ambulance environment .............................................................................................. 179
3.1 Patient information .......................................................................................................................... 179
3.2 Reversible illness .............................................................................................................................. 180
4 Community provision .......................................................................................................... 181
4.1 Working out-of-hours..................................................................................................................... 181
4.2 Arranging alternative care .............................................................................................................. 182
4.3 Community back up ........................................................................................................................ 182
5 Calling for help ...................................................................................................................... 183
5.1 Out of hours...................................................................................................................................... 183
5.1.1 Seeking hospital care....................................................................................................................................185
6 Conclusion .............................................................................................................................. 186
Chapter 8 A sociological perspective on end-of-life admissions .................... 190
1 Empirical problems ............................................................................................................... 191
1.1 Planning for end-of-life care ........................................................................................................... 191
1.1.1 Mechanical model care ................................................................................................................................191
1.1.2 Problems in planning ....................................................................................................................................193
1.1.3 Organic organisation ....................................................................................................................................194
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