Law, Palliative Care and Dying: Legal and Ethical Challenges

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Cover Half Title Titla Page Copyright Page Table of Contents Acknowledgements Table of Legislation Table of Cases Introduction: law, palliative care and dying: legal and ethical challenges Introduction to central themes Terminology Palliative care Specialist palliative care End-of-life care Euthanasia Defining the research boundaries Chapter structure 1. The development and practice of palliative care 1.0 Introduction 1.1 The development of hospice and palliative care 1.1.1 The emergence of modern palliative care 1.1.2 Expansion in categories of palliative care patients 1.2 Palliative care providers 1.2.1 Hospice care 1.2.2 Hospitals 1.2.3 The community setting 1.3 Palliative care practices 1.3.1 Sedation in palliative care 1.3.2 Artificial nutrition and hydration 1.4 Conclusion 2. Specialist palliative care and euthanasia: a legitimate distinction? 2.0 Introduction 2.1 Euthanasia: law and practice in the Netherlands Defining ‘lasting and unbearable suffering’ 2.2 Murder: identifying the requisite intention 2.3 The legal and ethical justification of specialist palliative care practices 2.3.1 The doctrine of double effect 2.3.2 Palliative sedation without artificial nutrition and hydration 2.4 Conclusion 3. The human rights framework for palliative care 3.0 Introduction 3.1 Defining the concept of autonomy 3.1.1. The role of autonomy in advancing palliative care goals 3.1.2 The liberal conception of autonomy in palliative care 3.1.3 Patient autonomy and the law 3.1.4 The refusal of medical treatment 3.1.5 A demand for medical treatment 3.1.6 Capacity in Ireland and England and Wales 3.2 The concept of dignity in palliative care 3.2.1 Inadequate palliative care provision as inhuman or degrading treatment? 3.2.2 The right to physical integrity – respect for private and family life 3.3 A right to palliative care? 3.3.1 Advocating for a right to palliative care 3.3.2 The basis of a right to palliative care in international law 3.3.4 The basis of a right to palliative care in domestic law 3.4 Conclusion 4. The legal framework for palliative care in the United Kingdom and Ireland 4.0 Introduction 4.1 The legal framework in England and Wales for palliative care 4.1.1 Shaping palliative care provision and development 4.1.2 The standard setting function of the General Medical Council 4.1.3 The demise of the Liverpool Care Pathway 4.1.4 The planning and commissioning of palliative care services 4.1.5 The contribution of the National Institute for Health and Care Excellence 4.1.6 An emerging legislative response to palliative care provision 4.2 The legal framework for palliative care in Ireland 4.2.1 A framework for palliative care development 4.2.2 The Irish Medical Council 4.2.3 The Nursing and Midwifery Board of Ireland 4.2.4 Diverging standards and practice 4.2.5 The Irish Association of Palliative Care 4.3 The European Association of Palliative Care 4.3.1 EAPC recommended framework for the use of sedation in palliative care 4.4 Palliative care as a legal process 4.5 Conclusion 5. The legal framework for palliative care in the Netherlands 5.0 Introduction 5.1 The development of palliative care in the Netherlands 5.2 Guidelines on specialist palliative care in the Netherlands 5.3 The KNMG Guideline for Palliative Sedation 5.3.1 Defining the practice of palliative sedation 5.3.2 Indications and preconditions for palliative sedation 5.3.3 The decision-making process for palliative sedation 5.3.4 The administration of fluids in palliative care 5.3.5 The administration of palliative sedation 5.3.6 The impact of the KNMG Guideline for Palliative Sedation 5.3.7 Normal medical practice: a sufficient justification? 5.4 Conclusion 6. The legal framework for palliative care in France 6.0 Introduction 6.1 End-of-life care: an evolving social and legal paradigm 6.1.1 The conflict of autonomy and medical paternalism 6.2 The legal framework for palliative care 6.3 Law n° 99-477 of 9 June 1999 6.4 Law n° 2002-303 of 4 March 2002 6.5 Law n° 2005-370 of 22 April 2005 6.5.1 The withholding and withdrawal of medical treatment 6.5.2 Recognition of patient autonomy 6.5.3 Double effect reasoning 6.5.4 Developing palliative care capacity 6.6 Decision-making in practice: pre- and post-Leonetti 6.7 Law n° 2016-87 of 2 February 2016 6.7.1 Penser solidairement la fin de vie 6.7.2 Substance of the Claeys-Leonetti Law 6.7.3 Defining the practice of continuous deep sedation: a practice beyond palliative medicine? 6.7.4 Indications and preconditions for continuous deep sedation 6.7.5 The decision-making process for continuous deep sedation 6.7.6 The administration of artificial nutrition and hydration 6.7.7 The administration of continuous deep sedation 6.7.8 Converging practices at the end-of-life? 6.7.9 The impact of the Claeys-Leonetti law 6.8 Conclusion Conclusion The legitimacy of the distinction between specialist palliative care practices and euthanasia The human rights framework for palliative care A contemporary ars moriendi in law Conclusion: the way forward Bibliography Index