living with frailty: implications for the practice of advance care planning

302 Pages·2017·6.1 MB·English

by  Christine Middleton

Bramley, Louise (2016) One day at a time: living with
frailty: implications for the practice of advance care
planning: a multiple case study. PhD thesis, University of
Nottingham.
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ONE DAY AT A TIME

Living with frailty: Implications for the
practice of advance care planning

A multiple case study

Louise Bramley
RN (Adult Branch), BSc (Hons), MA (Research Methods)

Thesis submitted to the University of Nottingham for the
degree of Doctor of Philosophy

January 2016
ABSTRACT
Background: Advance care planning (ACP) was originally designed to
promote autonomy and is commonly conceptualised as informing treatment
In the UK,
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healthcare policy has emphasised the potential for ACP to significantly
contribute to improvements in experiences of death and dying for patients
and their significant others. Older people with progressive frailty are at
high risk of mortality, loss of capacity and increasing dependency on carers
and care services, yet uptake of ACP in this group is poor. Little is known
about whether frail older people regard advance care planning as relevant
or what perspectives they have on decision making for the future.
Aim: To explore the expectations, experiences and understandings of frail
older people and their significant others of planning for future care and to
examine the implications of this for the practice of ACP.
Methods: The study adopted an exploratory case study design using serial
qualitative interviews and the responsive interview technique. Frail older
people and their nominated carers were recruited from hospital wards in a
large University Hospital NHS Trust prior to discharge. They took part in up
to two interviews either in hospital or in their homes. Within and cross-case
qualitative analysis was undertaken.
Findings: Sixteen frail older people and eight significant others were
recruited (Seventeen female, seven male, age range 70-96). The study
found that frail older people experience profound uncertainty, associated
with rapid changes to their physical and/or mental state and complex
challenges in everyday life. Consequently, their attention is focused on
day-to-day maintenance of quality of life, rather than on future care or
advance decision making.
Many had difficulty imagining a future; as dependency grew, so did reliance
on care services to support their needs. What once would have been
deemed an unacceptable way of living became routine. For many, the care
system offers a lifeline without which they would not be able to exist at
home. However, it also appeared to offer little individual flexibility,
meaning that frail older people struggled to assert the control over day-to-
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day decisions and choices that others take for granted. This increasing
dependency and reliance on care and care services has the potential to
undermine the decision-making capacity of frail older people. For many,
autonomous choice and decision making gave way to relationships,
partnerships and negotiations that are commensurate with a more
relational model of autonomy.
Conclusion: The end-of-life orientation of current ACP policy and practice
is at odds with the dynamic nature of frailty and does not correspond to
The liberal ideal
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of autonomy as self-determination and self-interest presented by the
legalistic and ideologically driven policy of ACP is out of step with the lived
worlds of frail older people. For those facing increasing dependency on care
and care services, frameworks that acknowledge a more relational
approach when planning future care will be needed in order to engage this
group of frail older people in ACP.
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SCHOLARLY OUTPUTS FROM THIS THESIS
Published abstracts:
Bramley, L., Seymour, J., Cox, K. (2015) Living with frailty: Implications
for the conceptualisation of ACP. BMJ Supportive and Palliative Care, 5
(supplement 2), p. A19.
Conference presentations:
Bramley, L., Seymour, J., Cox, K. (2015). Living with frailty: Implications
for the conceptualisation of ACP. 5th International Conference on Advance
Care Planning and End of Life Care (ACPEL), Munich, Germany.
Bramley, L., (2015). From clinical nurse to nurse researcher: Raising the
importance of reflexivity when merging professional expertise with
research. PhD/MD Student Conference: Research in the field of
supportive/palliative and end-of-life care: developing the next generation
of researchers, University of Nottingham, Nottingham, UK.
Conference posters:
Bramley, L., Seymour, J., Cox, K. (2016) Negotiating care services with
frailty: Implications for advance care planning. 11th Palliative Care
Congress: Rediscovering Holism: the future for Palliative Care, Glasgow,
Scotland, UK.
Invited speaker:
Bramley, L. (2015) Negotiating care services with frailty: Implications for
decision making and advance care planning. ESRC Seminar Series:
Towards a European understanding of advance decision making: a
comparative, interdisciplinary approach. Leeds University Law School,
Leeds, UK.

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ACKNOWLEDGEMENTS
I am greatly indebted to the study participants and their significant others
who welcomed me into their lives and shared their stories with me.
Listening to you has been a privilege and one of the greatest learning
experiences of my life. You have taught me a lot about the human spirit
and have greatly influenced the way I now approach my nursing practice.
Sincere thanks to my supervisors Professor Jane Seymour and Professor
Karen Cox for guiding me throughout my PhD journey. Your unending
support and encouragement have been instrumental in enabling me to
broaden my thinking and challenge myself. I have enjoyed working with
you and hope to do so again in the future. Thanks must also go to Dr
Joanne Cooper who inspired me to take this opportunity when it came
along. Funding for this doctoral study was provided by the University of
Nottingham Life Cycle campaign. I am indebted to those (especially Karen)
who took part in such an amazing accomplishment and the donors who
gave support.
I would also like to thank my friends and colleagues Andrew Dainty, Dr
Joseph Manning, Dr Sara Borrelli, Laura Iannuzzi, Dr Hamilton Inbadas,
Rocio Fernandez, M(cid:243)rna , Deborah Oliveira, Dr Oonagh Meade,
(cid:0)✁✂✄☎☎✄✆
Emma Popejoy and the B33 community who have been such a rich source
of knowledge and support. Without you this journey would have been far
less enjoyable, and I look forward to friendships that will last well beyond
our time together. Thanks also to Tim Gibson for his proofreading and
support.
Without my amazing family, I would never have been able to get to this
point. It is only right that my husband, Paul, my daughters Hannah (12)
and Betty (9), and my mum and dad, Alan and Glenis Bramley, take a
central place in my PhD story. You have celebrated the highs and kept me
going throughout the difficult times. I thank you with all my heart.

This thesis is dedicated to the frail older people who took part in the study
and have since died. May you rest in peace.
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TABLE OF CONTENTS

ABSTRACT ...................................................................................... II

SCHOLARLY OUTPUTS FROM THIS THESIS .................................... IV

ACKNOWLEDGEMENTS .................................................................... V

TABLE OF CONTENTS..................................................................... VI

LIST OF TABLES ......................................................................... XIII

LIST OF FIGURES ........................................................................ XIV

LIST OF BOXES ............................................................................. XV

APPENDICES ............................................................................... XVI

LIST OF ABBREVIATIONS ........................................................... XVII

CHAPTER 1. INTRODUCTION AND OVERVIEW OF STUDY ......... 18

1.1. INTRODUCTION ....................................................................18

1.2. PERSONAL REFLECTIONS/MOTIVATIONS .................................18

1.3. SITUATING THE STUDY .........................................................20

1.4. STRUCTURE OF THE THESIS ..................................................24

CHAPTER 2. LITERATURE REVIEW ........................................... 25

2.1. INTRODUCTION ....................................................................25

2.2. AGEING, FRAILTY, SOCIETY AND DEATH .................................25

2.2.1. Ageing and frailty .................................................................26

2.2.2. The challenges of frailty in healthcare .....................................27

2.2.3. Preferred place of death ........................................................29

2.2.4. Talking about death and dying ...............................................30

2.3. ADVANCE CARE PLANNING: AN OVERVIEW ..............................31

2.3.1. The history and origins of ACP ................................................33

2.3.2. Philosophical and cultural challenges .......................................34

2.3.3. Advance care planning and end of life .....................................35

2.4. ASSESSING THE EVIDENCE: OUTCOMES OF ACP ......................37

2.5. BARRIERS TO ADVANCE CARE PLANNING ................................39
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2.5.1. Healthcare professionals and ACP ...........................................39

2.5.2. Documentation of advance care planning .................................41

2.5.3. Prognostication and timing of conversations .............................41

2.5.4. Willingness of patients to engage in ACP conversations .............44

2.5.5. Legal, moral and ethical issues with ACP .................................45

2.6. FRAILTY AND ADVANCE CARE PLANNING.................................46

2.6.1. Policy and practice guidance, ACP and frailty ............................47

2.6.2. Frailty and ACP: Existing research ..........................................49

2.6.3. Justification for the study ......................................................51

2.7. CHAPTER SUMMARY ..............................................................52

CHAPTER 3. METHODS AND METHODOLOGY ............................ 53

3.1. INTRODUCTION ....................................................................53

3.2. STUDY AIM ..........................................................................53

3.3. STUDY OBJECTIVES ..............................................................53

3.4. METHODOLOGY UNDERSTANDING THE APPROACH ................54
(cid:0)

3.4.1. Defining the inclusion criteria .................................................55

3.5. THE QUALITATIVE RESEARCH PARADIGM ................................58

3.5.1. Interpretive constructivist theory ............................................60

3.5.2. The insider/outsider debate: Reflexivity and reflection ...............62

3.6. SELECTING A STUDY DESIGN ................................................64

3.6.1. Multiple case study ...............................................................65

3.6.2. The serial interview technique ................................................67

3.6.3. Responsive interview technique ..............................................69

3.6.4. Establishing rigour in qualitative case study design ...................70

3.7. STUDY PROCEDURES ............................................................72

3.7.1. Ethical approval process ........................................................72

3.7.2. Patient and public involvement ...............................................72

3.7.3. Study setting and sampling ....................................................72
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3.7.4. Characteristics of the cases ....................................................73

3.7.5. Recruitment and selection......................................................78

3.7.6. Access to participants ...........................................................80

3.7.7. The reality of recruitment and gatekeeping ..............................81

3.8. ETHICAL CONSIDERATIONS AND ISSUES ................................83

3.8.1. Ensuring informed consent.....................................................84

3.8.2. Confidentiality and anonymity ................................................86

3.8.3. End-of-life care: A sensitive topic area ....................................86

3.8.4. Safeguarding vulnerable frail older adults ................................87

3.8.5. Maintaining professional boundaries ........................................88

3.9. ANALYSIS ............................................................................88

3.9.1. Data transformation and management ....................................88

3.9.2. Individual case analysis .........................................................90

3.9.3. Cross-case analysis ...............................................................91

3.10. CHAPTER SUMMARY ..............................................................92

CHAPTER 4. INTRODUCING THE PARTICIPANTS ...................... 93

4.1. INTRODUCTION ....................................................................93

4.2. CLARA .................................................................................94

4.3. JOSIE ..................................................................................96

4.4. ALAN ..................................................................................98

4.5. ELSIE ................................................................................ 100

4.6. WILFRED ........................................................................... 102

4.7. PAMELA ............................................................................. 104

4.8. HARRY .............................................................................. 106

4.9. ROSE ................................................................................ 108

4.10. MARY ................................................................................ 110

4.11. BERT ................................................................................. 112

4.12. STANLEY ........................................................................... 114
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4.13. JIM ................................................................................... 116

4.14. ANNIE ............................................................................... 118

4.15. NANCY .............................................................................. 120

4.16. BRENDA ............................................................................ 122

4.17. MAUD................................................................................ 124

4.18. CHAPTER SUMMARY ............................................................ 125

FOREWORD TO THE INTERPRETIVE CHAPTERS ........................... 126

CHAPTER 5. LIVING WITH FRAILTY: DEVELOPING AN

UNDERSTANDING ....................................................................... 129

5.1. INTRODUCTION .................................................................. 129

5.2. IDENTIFYING WITH FRAILTY ................................................ 130

5.3. BECOMING FRAIL ............................................................... 131

5.3.1. Extremes of frailty: Small changes, protracted consequences ... 134

5.3.2. The changing faces of frailty ................................................ 136

5.3.3. Establishing new routines: Adapting to change ....................... 137

5.3.4. Living and coping with uncertainty ........................................ 138

5.4. THE EFFECT OF FRAILTY ...................................................... 140

5.4.1. Loss of independence and fear of becoming a burden .............. 141

5.4.2. Maintaining independence .................................................... 143

5.4.3. Losing confidence and living with fear ................................... 144

5.4.4. Living with loneliness and isolation: The loss of freedom .......... 146

5.5. ADAPTING TO FRAILTY ........................................................ 147

5.5.1. Managing adversity to remain independent ............................ 147

5.6. ACCEPTANCE, POSITIVITY AND GAINING CONTROL ................ 148

5.6.1. The importance of motivation, purpose and hope.................... 150

5.7. LOST AND CHANGING IDENTITIES ....................................... 152

5.7.1. Loss of significant others ..................................................... 153

5.8. MAKE DO AND MEND: A LIFETIME OF SOCIETAL CHANGE ....... 154
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