End of life choices: Consensus and Controversy

by Fiona Randall, Robin Downie

Overview

A book for nurses, doctors and all who provide end of life care, this essential volume guides readers through the ethical complexities of such care, including current policy initiatives, and encourages debate and discussion on their controversial aspects. Divided into two parts, it introduces and explains clinical decision-making processes about which there is broad consensus, in line with guidance documents issued by WHO, BMA, GMC, and similar bodies. The changing political and social context where 'patient choice' has become a central idea, and the broadened scope of patients' best interests, have added to the complexity of decision-making in end of life care. The authors discuss issues widely encountered by GPs, nurses, and hospital clinicians. These include patient choice, consent, life prolonging treatment, and symptom relief including sedation. Part two explores the more controversial current end of life care initiatives, such as advance care planning, preferred place of care and death, euthanasia and assisted suicide, extended ideas of 'best interests', and the view that there are therapeutic duties to the relatives of patients. Throughout their discussion the authors draw attention to loose ends and contradictions in some of the proposals. Examining the current policy of consumerist choice, they reject its place in the health service, proposing a realistic, fair, humane, and widely adoptable system of end of life care.

As knowledge of ethical theories is required in training courses, and the vocabulary of ethical theory is widespread in current discussions, a substantial appendix on ethical theories and terms is available online.

Written by the same authors as The Philosophy of Palliative Care: Critique and Reconstruction, which won the Medical Journalists' Association Specialist Book Award 2007, this new book for non-specialists is essential reading for all health care professionals involved in providing end of life care.

Product Details

ISBN-13:	9780199547333
Publisher:	Oxford University Press
Publication date:	12/13/2009
Pages:	240
Product dimensions:	6.10(w) x 9.10(h) x 0.60(d)

About the Author

Having trained in palliative medicine at St Christopher's Hospice, London, under the leadership of Dame Cicely Saunders, Fiona Randall has been a consultant in palliative medicine since 1982.
She has a special interest and academic background in health care ethics, and a philosophy PhD. Publications include 'Palliative Care Ethics' and 'The Philosophy of Palliative Care: critique and reconstruction', both Oxford University Press. She has served on the BMA Ethics Committee, and represented the Association for Palliative Medicine in consultations on the Mental Capacity Act and its Code of Practice. She has been involved in producing national guidance on advance care planning, and has given evidence to two House of Lords Select Committees on euthanasia.
She serves on her Acute Hospital Clinical Ethics Committee, and teaches nationally and internationally on ethical issues in end of life care. Robin Downie was educated at the Universities of Glasgow and Oxford. Before moving into university teaching he was a Russian interpreter in the Army. He has been a member of Government and professional committees concerned with ethical issues, such as the BMA Ethics Committee and Government Committees on xenotransplantation and genetics.
In addition to teaching and writing on topics in moral and political philosophy and the philosophy of science he was involved in teaching ethics to undergraduate and postgraduate medical, dental and nursing students and practitioners. Along with Sir Kenneth Calman (formerly Chief Medical Officer, UK) he began the movement now known as the 'medical humanities' i.e. the use of literature and other arts and humanities in the education of health care professionals. In particular, this way of teaching bioethics takes professionals beyond regulations, widens their perceptions of practice, and affects attitudes to patients.

Table of Contents

List of abbreviations and acronyms xv

Introduction xvii

Part 1

1 Patient choice and consent 3

1.1 Choice: the traditional concept 4

1.2 Consumer choice, the free market and the health service 6

1.3 Some problems with consumerism in end of life care 7

1.3.i Competition 8

1.3.ii Prevention from harm 10

1.3.iii Alternatives 11

1.3.iv Responsibility 12

1.3.v Money 13

1.4 Implications of a system for end of life care based on consumerism 13

1.4.i Consent 13

1.4.ii The concept of a profession 14

1.4.iii Motivation 15

1.4.iv The art of dying lost by consumerism 16

1.5 The roots of the choice agenda 17

1.6 Conclusions 19

References 20

2 Choice and best interests: clinical decision-making in end of life care 23

2.1 Understanding the clinical problem 24

2.2 Selecting the treatment options which offer a prospect of net benefit 25

2.3 Assessment of capacity 28

2.4 Making the final decision with patients who have capacity: consent 32

2.4.i How much information? 33

2.4.ii The continuing request for what is clinically inappropriate 40

2.4.iii A right to consent or a duty to do so? 41

2.5 Making the final decision: patients without capacity 41

2.6 Conclusions 46

References 46

3 Three logical distinctions in decision-making 49

3.1 Intended and foreseen consequences: doctrine of double effect 49

3.2 Acts and omissions 52

3.3 Killing and letting die 54

3.4 Conclusions 59

References 59

4 Choice and best interests: life-prolonging treatments 61

4.1 Preliminary issues of ethical importance 62

4.2 Understanding the clinical problem 67

4.3 Selecting treatment options that offer a prospect of net benefit 67

4.4 Making the final decision with patients who have capacity 70

4.4.i Disclosure of information 70

4.4.ii Patients requesting clinically inappropriate treatments 75

4.4.iii Reviewing the decision 76

4.4.iv Life-prolonging treatments and advance care planning 77

4.5 Making the final decision: patients without capacity 77

4.5.i Special features of decision-making regarding life-prolonging treatment 78

4.5.ii Consulting the patient 79

4.5.iii Consulting those close to the patient 79

4.5.iv The basis of the final decision 80

4.5.v Reviewing the decision 81

4.6 Conclusions 81

References 82

5 Choice and best interests: symptom control and the maintenance of function 85

5.1 The basis of most moral problems in symptom control 85

5.2 Moral problems of symptom control in patients with capacity 86

5.3 Moral problems of symptom control in patients who lack capacity 90

5.3.i Moral problems when the patient is imminently dying 90

5.3.ii Moral problems when the patient is not imminently dying 93

5.4 Conclusions 96

References 97

6 Choice and best interests: sedation to relieve otherwise intractable symptoms (terminal sedation) 99

6.1 Identifying the problems 99

6.2 What makes the analysis difficult 100

6.2.i Lack of a clear definition of 'terminal sedation' 100

6.2.ii Lack of clarity about the fundamental moral concepts of intention, outcome and causality in decision-making about sedation 102

6.2.iii Artificial hydration 103

6.3 Clinical circumstances where there is consensus 103

6.4 Clinical circumstances which are controversial 105

6.5 Solution to the problems via the doctrine of double effect 112

6.6 Solution via professional guidelines 113

6.7 Anticipating loss of capacity 114

6.8 Conclusions 115

References 115

Conclusions to Part 1 117

Part 2 Introduction to Part 2: controversies 119

7 Choice and advance care planning (ACP): definition, professional responsibilities 121

7.1 National guidance on ACP 124

7.2 Who should have the discussion with the patient? 125

7.3 When should ACP be instigated? 126

7.4 Information needed by patients for ACP regarding future treatment 128

7.5 Professional responsibility for establishing validity and applicability 130

7.6 Importance of recording and review 134

7.7 Responsibility for taking advance statements into account in best interests judgements 135

7.8 Ethically important common misunderstandings 135

7.8.i Failure to distinguish ACP from other forms of care planning 136

7.8.ii Failure to recognize importance of voluntariness 136

7.8.iii Failure to recognize the patient's right to confidentiality 137

7.8.iv Failure to obtain the patient's permission to record the outcome of the ACP discussion 138

7.8.v Misunderstandings regarding the function of advance statements, advance care plans in best interests judgements 138

7.9 Support for ACP, advance statements 139

7.10 ACP: an intervention with a limited UK evidence base 140

7.11 Cardiopulmonary resuscitation and ACP 142

7.12 Conclusions 143

References 144

8 Preferred place of care and death 147

8.1 The national context 147

8.2 Ethical problems arising from the preferred place of care and death policy 149

8.2.i Voluntariness in ACP and care planning generally 149

8.2.ii Pressure on patients to express achievable preferences 150

8.2.iii Effects on decision-making for patients who lack capacity 152

8.2.iv Audit 153

8.2.v The role of family members 154

8.2.vi Use of resources 156

8.3 ACP and preferred place of care and death: should we be asking a different question? 162

8.4 Conclusions 163

References 163

9 Choice, assisted suicide and euthanasia 165

9.1 The argument from 'moral equivalence' 166

9.2 The argument from the 'right to die' 169

9.2.i A 'right to die'? 170

9.2.ii Human rights and the 'right to die' 173

9.3 The argument from dignity 176

9.3.i The analysis of dignity 176

9.3.ii Dignity, assisted suicide and euthanasia 178

9.4 A simple argument and a simple reply 179

9.5 Conclusions 181

References 182

10 Best interests: extended senses 185

10.1 'Best interests' extended to 'whole person' or 'holistic' care 186

10.2 Meaning and dignity at the end of life 195

10.3 Best interests and relatives 198

10.3.i The nature and extent of obligations to relatives 200

10.3.ii Bereavement care: benefit or harm? 202

10.3.iii Cost-effectiveness of benefit to relatives 205

10.4 Conclusions 206

References 207

General conclusions 211

Index 215