Advance care planning and living with dying

353 Pages·2017·3.4 MB·English

by  Richard Russell

Advance care planning and living with dying:
the views of hospice patients

Sarah JF Russell

Submitted to the
University of Hertfordshire
In partial fulfilment of the requirements of the degree
Doctorate in Health Research
May 2016

1
Acknowledgements

This dissertation was made possible by the generosity of time and thoughts of the hospice
participants who took part in the research interviews.

I am most grateful to my supervisors Professor Hilary Thomas and Dr Angela Dickinson from
the Centre for Research in Primary and Community Care at the University of Hertfordshire.
They patiently supported and encouraged me. Thank you also to my friends and colleagues in
the hospices, hospitals, community, care homes, social, health, palliative and education
teams that I have worked with. They consistently motivated me to make a difference to those
we care for. I am also grateful for the many unnamed others who continually provoked my
thinking in publications, education sessions, conferences, discussions and through social
media.

Finally, thank you to my husband and daughter for their constant interest, support and
encouragement.

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Abstract

Advance care planning for adults is a process of consideration, discussion and decisions about
care at the end of life. There is evidence that advance care planning improves outcomes such as
the achievement of preferred place of death and the quality of dying. However, the uptake of
advance care planning is variable. There are calls for more research to understand what influences
people to carry it out to plan services and improve the quality of life of patients and their families.
This dissertation reports on a qualitative, video interview study of 15 adult hospice patients. The
study was interpretative influenced by the narrative approach with data driven thematic analysis
and a video aide memoir . Coding was carried out using the Computer Assisted Qualitative Data
Software programme Transana. The rigour and credibility of the study was viewed through t he
lens of trustworthiness which included the development of a Continuous Conversation
Framework. The aim of the study was to investigate what would influence hospice patients to
discuss their advance care planning to develop future education programmes based upon the
perspectives of people at the end of their life:
1. What influences hospice patients in their advance care planning?
2. What communication skills do hospice patients find helpful when clinicians discuss
advance care planning?
Three findings are reported. These suggest that the influences on advance care planning activity
and conversations is the less reported relationship of the personal context of a person’s life (as
well as services, diagnosis and prognosis considerations). First, the findings highlight the relevance
of how people with an incurable illness live with and talk about their dyingw ithin the individual
context of their daily lives. Secondly, differences are illustrated between how people prepare (for
themselves) and plan (for others) in their dying. Thirdly, clinician communication behaviours such
as empathy (through mutual connection and visible behaviours), tailored conversations (through
accessible and selective honesty) and the design and use of space empower people to carry out
conversations which support them as they live with, prepare and plan for dying. The three findings
contribute to the perspective which supports the complexity of advance care planning that should
focus on the context of person’s life as well as the paperwork, prognosis or diagnosis. A
contribution to person -centred care is suggested through a model of relational advance care
planning.
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Contents

Acknowledgements ................................................................................................................................. 2
Abstract ................................................................................................................................................... 3
Glossary of terms ................................................................................................................................ 9
Chapter 1: Introduction ........................................................................................................................ 10
Study background ............................................................................................................................. 10
Introduction to advance care planning ............................................................................................. 12
Rationale for the research question ................................................................................................. 15
Organisation of the thesis ................................................................................................................. 15
Chapter 2: Literature Review ................................................................................................................ 17
Introduction ...................................................................................................................................... 17
Overview of the literature searching strategies ............................................................................... 17
When and how the literature was searched..................................................................................... 17
Data bases used to search the literature .......................................................................................... 18
Search timeframe and terms used.................................................................................................... 18
Figure 1: literature key search terms ............................................................................................ 19
Searching the literature .................................................................................................................... 19
The benefits of advance care planning ............................................................................................. 20
How successful is advance care planning? ....................................................................................... 21
Terms, documents, legal and organisation frameworks .................................................................. 22
Hidden and vulnerable populations .................................................................................................. 24
Diagnosis inequity ............................................................................................................................. 25
Demographic factors ......................................................................................................................... 26
Person-centred care .......................................................................................................................... 28
Living with dying ............................................................................................................................... 30
Timing of advance care planning conversations ............................................................................... 30
Living with uncertainty...................................................................................................................... 33
Planning and preparing for dying...................................................................................................... 34
The cost of dying ............................................................................................................................... 36
Home as the preferred place of death .............................................................................................. 38
Decisions made in advance and surrogate decision makers ............................................................ 39
Autonomy ......................................................................................................................................... 44
The good death ................................................................................................................................. 46
Assisted dying ................................................................................................................................... 49
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The communication skills literature ................................................................................................. 51
Barriers and blocks to communication ............................................................................................. 51
Benefits of communication ............................................................................................................... 52
Communication and advance care planning ..................................................................................... 53
Communication and advance care planning education ................................................................... 56
Literature review summary ............................................................................................................... 59
Chapter 3: Methodology ....................................................................................................................... 61
Introduction ...................................................................................................................................... 61
The research questions ..................................................................................................................... 61
Epistemological and methodological approach ................................................................................ 61
Qualitative approach rationale ......................................................................................................... 62
Narrative influence ........................................................................................................................... 64
Reflexivity: the defended subject and examples .............................................................................. 66
Figure 2: example of continuous conversation framework .......................................................... 70
Trustworthiness ................................................................................................................................ 71
Credibility .......................................................................................................................................... 73
Transferability ................................................................................................................................... 74
Dependability .................................................................................................................................... 74
Confirmability.................................................................................................................................... 75
Figure 3: audit and decision trail for transcription, coding and analysis ...................................... 76
The interviews ................................................................................................................................... 76
Video interviews ............................................................................................................................... 80
Examples of data density and video aide memoir ............................................................................ 82
Transana™ Computer Assisted Qualitative Data Analysis Software ................................................. 84
Ethical approval................................................................................................................................. 85
Ethical considerations ....................................................................................................................... 86
Being an ethical palliative care researcher ....................................................................................... 87
Sampling ............................................................................................................................................ 89
The research site ............................................................................................................................... 90
Recruitment ...................................................................................................................................... 91
Figure 4: recruitment, consent and interview process ................................................................. 92
Consent ............................................................................................................................................. 93
Figure 5: participant consent variances ........................................................................................ 93
Conducting the video interviews ...................................................................................................... 94
Figure 6: questions asked in all the interviews ............................................................................. 94
Transana™ and video interviews ...................................................................................................... 95
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Follow up ........................................................................................................................................... 95
Participants’ experience of taking part in the interviews ................................................................. 96
Figure 7: participants’ views on being video interviewed ............................................................ 96
Thematic analysis .............................................................................................................................. 97
Figure 8: phases of thematic analysis ........................................................................................... 98
Participants’ previous advance care planning activity ...................................................................... 99
The participants .............................................................................................................................. 100
Chapter 4 Results: Living with Dying ................................................................................................... 104
Introduction .................................................................................................................................... 104
Living with dying ............................................................................................................................. 105
Unfamiliarity with the term advance care planning ................................................................... 105
Living with the knowledge of their inevitable death .................................................................. 107
A constant companion ................................................................................................................ 107
The personal context .................................................................................................................. 109
Living with the uncertainty of time of death .............................................................................. 112
Emotional resilience .................................................................................................................... 117
Living with dying summary ............................................................................................................. 123
Chapter 5 Results: Preparing and Planning for Dying ......................................................................... 124
Introduction .................................................................................................................................... 124
Preparing for dying ......................................................................................................................... 124
An individual approach ............................................................................................................... 125
Personal mental preparation ...................................................................................................... 127
Friendships .................................................................................................................................. 130
Family responsibilities ................................................................................................................. 134
Planning for dying ........................................................................................................................... 137
Dying at home ............................................................................................................................. 137
Future needs of children ............................................................................................................. 141
Planning for suicide ..................................................................................................................... 144
Preparing and planning for dying summary ................................................................................... 156
Chapter 6 Results: Communication with clinicians ............................................................................. 157
Introduction .................................................................................................................................... 157
Empathy .......................................................................................................................................... 157
Defining empathy and its benefits .............................................................................................. 157
Mutual connection ...................................................................................................................... 159
Visible empathy........................................................................................................................... 169
Tailored conversations .................................................................................................................... 180
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Honesty ....................................................................................................................................... 180
The design and use of the environment ..................................................................................... 187
Communication with clinicians’ summary ...................................................................................... 194
Chapter 7: Discussion .......................................................................................................................... 195
Introduction .................................................................................................................................... 195
Summary of study’s findings ........................................................................................................... 195
Contribution to the evidence base ................................................................................................. 197
Living with, preparing and planning for dying ................................................................................ 198
Person-centred conversations ........................................................................................................ 206
Implications for communication education programmes .............................................................. 218
A model of relational advance care planning ................................................................................. 219
Figure 10: relational advance care planning ............................................................................... 221
Implications for policy, education and practice .............................................................................. 222
Strengths and limitations of carrying out the research .................................................................. 224
Future research recommendations ................................................................................................ 225
Final thoughts ................................................................................................................................. 226
References ...................................................................................................................................... 227
Appendices ...................................................................................................................................... 307
Appendix 1: examples of international terms for advance care planning .................................. 307
Appendix 2: seminal cases in advance care planning history ..................................................... 308
Appendix 3: summary of literature search strategy based upon PRISMA (2009) ...................... 309
Appendix 4: dying and illness trajectories concepts ................................................................... 310
Appendix 5: dying awareness ..................................................................................................... 311
Appendix 6: publication list......................................................................................................... 312
Appendix 7a: summary of participants’ contribution to the study themes: .............................. 317
living with dying .......................................................................................................................... 317
Appendix 7b: summary of participants’ contribution to the study themes: .............................. 318
preparing and planning for dying ................................................................................................ 318
Appendix 7c: summary of participants’ contribution to the study themes: ............................... 319
clinicians’ communication ........................................................................................................... 319
Appendix 7d: examples of data driven thematic analysis p rocess ............................................. 320
Appendix 8: University of Hertfordshire ethics approval ........................................................... 324
Appendix 9: research site ethics approval .................................................................................. 328
Appendix 10: research site research policy ................................................................................ 330
Appendix 11: examples of being an ethical palliative care researcher ...................................... 338
Appendix 12: sample invitation to participate in research flyer ................................................ 341
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Appendix 13: participant information sheet ............................................................................... 343
Appendix 14: staff information sheet ......................................................................................... 347
Appendix 15: consent form one: video and audio ...................................................................... 350
Appendix 16: consent form two: audio only............................................................................... 351
Appendix 17: interview schedule guide/reminder ..................................................................... 352
Appendix 18: sample thank you letter ........................................................................................ 353

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Glossary of terms

Advance care planning: Overarching term for thinking and planning about your future death.

Advance care plan: A written summary of your wishes and decisions about end of life care. In
England and Wales this may include an advance statement, advance decision to refuse
treatment, lasting power of attorney or similar.

Advance decision to refuse treatment (ADRT): In England and Wales this is a formal way to
document what treatments you do not want in the future if you cannot say so at the time.
Other international terms used include living wills, advance health directive, advance
directives or similar.

Advance statement: A written or verbal statement of your wishes and preferences for care
at the end of life.

Best interests: A process for clinicians to follow to assess, ascertain and decide what is in the
best interests for care for a person if they cannot say so themselves. Advance care planning
tools such as advance statements, advance decisions to refuse treatment and lasting power
of attorneys may be used to help gain as much information as possible about a person wishes.

DNACPR: Do not attempt cardio-pulmonary resuscitation.

End of life care: An approach to care for when somebody may be in the last years, year,
months, weeks or days of life.

Hospice care: An approach to care (as in palliative care) which includes helping people who
have an incurable illness live well until they die (and into bereavement for those that matter
to them) through person-centred care. Includes inpatient and outpatient care, outreach,
symptom control, conversations, education and research.

Lasting power of attorney (LPA): A term used in England and Wales for a legally appointed
surrogate decision maker. Can distinguish between health and financial decisions. Other
international terms include enduring, durable, health, continuing or similar.

Palliative care: A multi-professional approach to care for those who have an incurable illness
(as in hospice care) with a focus on physical, emotional, psychological, spiritual and social
support. Takes part in any setting and for those with cancer or non-cancer diagnoses.

Patient-centred care: An approach to care which situates the patient as an individual through
their bio-medical experience of ill health and disease.

Person-centred care: An approach to care which situates the person within the context of
their own social relationships, networks and experiences.

Supportive care: An umbrella term sometimes used for hospice, palliative and terminal care.

Terminal care: Often refers to the last weeks or days of life.
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Chapter 1: Introduction

Study background
This study is about adult advance care planning. It is motivated by a desire to understand
more about advance care planning to improve care through nursing research, policy, practice
and education. This is compatible with the observation that professional doctorates are
relevant not only to the knowledge economy but also with the potential to trans form practice
(Rolfe and Davies 2009). Nurse educators are in the business of transforming the view of the
“detached ivory -tower academic into meaningful, productive and mutually bene ficial
connections and collaborations with clinical colleagues and service areas” . (Darbyshire,
2011:724). Transforming health and nursing palliative care practice through achievable and
credible research and adding to the knowledge economy and practice was the motivation for
the research topic and design.

During 20 years’ experience of teaching communication and advance care planning skills to
health and social care professionals (clinicians); I have seen patients, their families and their
experience of incurable illness made into a complex jigsaw of assessment, care , interventions
and achievement of generic end of life goals. However, there seemed to be a mismat ch
between clinician s’ and peoples’ conversations and experiences . As an educator, I noticed
that clinicians found it challenging to identify and discuss the advance care planning needs of
patients and their families. This appeared to cause clinicians personal and professional
distress as they tried to achieve a good death for their patients through a repertoire of
communication skills and documents. Clinicians told stories of how patients did not want to
have the conversations or care choices offered to them. I felt the need to examine more
closely the influences on conversations such as advance care planning. My professional
experience was that there was copious literature about what people wanted or did not want
at the end of their life and fixed measurements of outcomes ( for example. how many people
died in their preferred place of death, had advance statements or advance decisions to refuse
treatment, surrogate decision makers and Do Not Attempt Cardio Pulmonary Resuscitation
(DNACPR) decisions etc.). However, the relationship of the context of people’s lives with the
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