End of life choices Consensus and Controversy

Palliative care is undergoing a period of rapid change, both in perceptible ways such as legislation, policy, and clinical guidelines, but also in its philosophy and ethics. There is ambiguity surrounding even the definitions used, ranging from palliative care, to supportive care, to end of life care. Randall and Downie propose that the uncertainties in the current thinking on end of life care may change the two ethical (and legal) principles on which modern medical care has been built--that practitioners must obtain the informed consent of the patient for treatment, and that practitioners must seek the best health interests of their patients. They examine a wide range of issues, themes, and contradictions prevalent in modern palliative/end of life care. These include: choice, assisted suicide, roles and values, responsibility, rights, Advance Care Plans, withdrawal and withholding of treatment, advocacy, the Mental Capacity Act, best interests, definitions, and the new Department of Health End of Life Care Strategy. Split into two section, End of Life Choices: Consensus and Controversies provides guidance through the ethical minefield that has developed for doctors and nurses who care for patients towards the end of life. The first section discusses some of the issues of end of life care as they are still widely encountered by GPs, nurses, and hospital clinicians. It presents a mainly consensus view on patient choice, consent, life-prolonging treatment, and symptom relief, including sedation. The second section discusses some current controversies, such as advance care planning, preferred place of care and death, physician assisted suicide, and extended ideas of "best interest," including the idea that there are therapeutic duties to the relative of patients. Additional online resources outline the common ethical theories and the vocabulary used in ethical theory which is useful for readers who are taking part in training courses.

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.

List of abbreviations and acronyms	p. xv
Introduction	p. xvii

Patient choice and consent	p. 3
Choice: the traditional concept	p. 4
Consumer choice, the free market and the health service	p. 6
Some problems with consumerism in end of life care	p. 7
Competition	p. 8
Prevention from harm	p. 10
Alternatives	p. 11
Responsibility	p. 12
Money	p. 13
Implications of a system for end of life care based on consumerism	p. 13
Consent	p. 13
The concept of a profession	p. 14
Motivation	p. 15
The art of dying lost by consumerism	p. 16
The roots of the choice agenda	p. 17
Conclusions	p. 19
References	p. 20
Choice and best interests: clinical decision-making in end of life care	p. 23
Understanding the clinical problem	p. 24
Selecting the treatment options which offer a prospect of net benefit	p. 25
Assessment of capacity	p. 28
Making the final decision with patients who have capacity: consent	p. 32
How much information?	p. 33
The continuing request for what is clinically inappropriate	p. 40
A right to consent or a duty to do so?	p. 41
Making the final decision: patients without capacity	p. 41
Conclusions	p. 46
References	p. 46
Three logical distinctions in decision-making	p. 49
Intended and foreseen consequences: doctrine of double effect	p. 49
Acts and omissions	p. 52
Killing and letting die	p. 54
Conclusions	p. 59
References	p. 59
Choice and best interests: life-prolonging treatments	p. 61
Preliminary issues of ethical importance	p. 62
Understanding the clinical problem	p. 67
Selecting treatment options that offer a prospect of net benefit	p. 67
Making the final decision with patients who have capacity	p. 70
Disclosure of information	p. 70
Patients requesting clinically inappropriate treatments	p. 75
Reviewing the decision	p. 76
Life-prolonging treatments and advance care planning	p. 77
Making the final decision: patients without capacity	p. 77
Special features of decision-making regarding life-prolonging treatment	p. 78
Consulting the patient	p. 79
Consulting those close to the patient	p. 79
The basis of the final decision	p. 80
Reviewing the decision	p. 81
Conclusions	p. 81
References	p. 82
Choice and best interests: symptom control and the maintenance of function	p. 85
The basis of most moral problems in symptom control	p. 85
Moral problems of symptom control in patients with capacity	p. 86
Moral problems of symptom control in patients who lack capacity	p. 90
Moral problems when the patient is imminently dying	p. 90
Moral problems when the patient is not imminently dying	p. 93
Conclusions	p. 96
References	p. 97
Choice and best interests: sedation to relieve otherwise intractable symptoms (terminal sedation)	p. 99
Identifying the problems	p. 99
What makes the analysis difficult	p. 100
Lack of a clear definition of 'terminal sedation'	p. 100
Lack of clarity about the fundamental moral concepts of intention, outcome and causality in decision-making about sedation	p. 102
Artificial hydration	p. 103
Clinical circumstances where there is consensus	p. 103
Clinical circumstances which are controversial	p. 105
Solution to the problems via the doctrine of double effect	p. 112
Solution via professional guidelines	p. 113
Anticipating loss of capacity	p. 114
Conclusions	p. 115
References	p. 115
Conclusions to Part 1	p. 117
Introduction to Part 2: controversies	p. 119
Choice and advance care planning (ACP): definition, professional responsibilities	p. 121
National guidance on ACP	p. 124
Who should have the discussion with the patient?	p. 125
When should ACP be instigated?	p. 126
Information needed by patients for ACP regarding future treatment	p. 128
Professional responsibility for establishing validity and applicability	p. 130
Importance of recording and review	p. 134
Responsibility for taking advance statements into account in best interests judgements	p. 135
Ethically important common misunderstandings	p. 135
Failure to distinguish ACP from other forms of care planning	p. 136
Failure to recognize importance of voluntariness	p. 136
Failure to recognize the patient's right to confidentiality	p. 137
Failure to obtain the patient's permission to record the outcome of the ACP discussion	p. 138
Misunderstandings regarding the function of advance statements, advance care plans in best interests judgements	p. 138
Support for ACP, advance statements	p. 139
ACP: an intervention with a limited UK evidence base	p. 140
Cardiopulmonary resuscitation and ACP	p. 142
Conclusions	p. 143
References	p. 144
Preferred place of care and death	p. 147
The national context	p. 147
Ethical problems arising from the preferred place of care and death policy	p. 149
Voluntariness in ACP and care planning generally	p. 149
Pressure on patients to express achievable preferences	p. 150
Effects on decision-making for patients who lack capacity	p. 152
Audit	p. 153
The role of family members	p. 154
Use of resources	p. 156
ACP and preferred place of care and death: should we be asking a different question?	p. 162
Conclusions	p. 163
References	p. 163
Choice, assisted suicide and euthanasia	p. 165
The argument from 'moral equivalence'	p. 166
The argument from the 'right to die'	p. 169
A 'right to die'?	p. 170
Human rights and the 'right to die'	p. 173
The argument from dignity	p. 176
The analysis of dignity	p. 176
Dignity, assisted suicide and euthanasia	p. 178
A simple argument and a simple reply	p. 179
Conclusions	p. 181
References	p. 182
Best interests: extended senses	p. 185
'Best interests' extended to 'whole person' or 'holistic' care	p. 186
Meaning and dignity at the end of life	p. 195
Best interests and relatives	p. 198
The nature and extent of obligations to relatives	p. 200
Bereavement care: benefit or harm?	p. 202
Cost-effectiveness of benefit to relatives	p. 205
Conclusions	p. 206
References	p. 207
General conclusions	p. 211
Index	p. 215
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End of life choices Consensus and Controversy

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