Challenges to the global issue of end of life care : training and implementing change

This book addresses the problems faced by people and hospitals dedicated to providing optimal end-of-life care and asks whether ethicists can function as experts on this subject. Though ethics consultation is a growing practice in medical contexts, difficult questions surrounding the role of ethicists in professional decision-making remain. The chapters in this book examine the nature and plausibility of moral expertise, the relationship between character and expertise, the nature and limits of moral authority, the question of how one might become a moral expert, and the trustworthiness of moral testimony. This volume not only engages with the growing literature in the debate on end-of-life care but also offers new perspectives from both academics and practitioners. Such perspectives include ways on how to get together to optimize end-of-life care. This book is of particular interest to bioethicists, clinicians, ethics committees, students of social epistemology, patient groups, and institutions, especially religious, who may not be sufficiently imparting the social teachings of end-of-life care. It also shows how they are indeed stakeholders for what is today called ‘a good death’. These new essays advance discussions and provide practical information on dying as well as acting as a guide to those interested in actively effecting change. Preface Acknowledgements Contents About the Contributors Part I: Ethical and Social Issues Chapter 1: Introduction: Harmonising End of Life Care – A Global Public Health Issue References Chapter 2: The Liverpool Care Pathway: Lessons in Care of the Dying 2.1 At the End of Life 2.2 The Pathway 2.3 The Controversy 2.4 The Response 2.5 Further Considerations 2.6 The Neuberger Inquiry A Postscript to the LCP Controversy Chapter 3: Spirituality, Religion, and Psychology 3.1 Introduction 3.2 Spirituality Vs. Religion: A Debate with Many Connotations 3.3 Psychology Vs Spirituality: A Sharp Divide? 3.4 Religion Vs. Psychology: Room for Dialogue 3.5 Religion and Health 3.6 Religious Beliefs About Major End-of-Life Issues 3.7 Spirituality at the End of Life 3.8 Spiritual Distress 3.9 Regarding a Spiritual Dimension 3.10 Helping and Assisting Until the End 3.11 Conclusion References Chapter 4: Global Systems: Palliative Care and Hospices at the End of Life 4.1 Prologue 4.2 Palliative Care Definition – New Features 4.3 Palliative Care as an Integrated Service 4.4 Complex Deaths: A New Global Challenge 4.5 Conclusion References Chapter 5: What Makes a Good Death? Acknowledging the Global Cultural and Social Issues 5.1 The Problem of Mortality 5.2 Global Bioethics 5.3 Global Quality End of Life Care 5.4 The Evolution and Future of Dying – Towards Global Good Death References Part II: Professional Issues Chapter 6: Medical Decision-Making at the End of Life 6.1 Objectives for the Chapter 6.2 Structure of the Chapter 6.3 Ethical Decision Making in a Global Context 6.4 Our Reactions to the Thought of Death and How This Affects Decision Making 6.5 Designing Containers of Care That Best Help the Patient and Those Close to Them 6.6 The Moral Challenges We Face at the End of Life 6.7 Withholding and Withdrawing Interventions 6.8 Comfort at the End of Life: Requests to End Life and Treatments that May Hasten Death 6.9 Decision Making When Faced with Uncertainty 6.10 Futility and How to Apply in Clinical Care 6.11 Planning Ahead: Is Advance Care Planning the Answer? 6.12 How to Have Important Discussions When There Is Disagreement or Uncertainty 6.13 How to Grow and Develop Practice in End of Life Care 6.14 In Conclusion References Chapter 7: General Practice and Care at the End of Life: How Family Practice Changes According to Country 7.1 Introduction 7.2 Core Competencies at End of Life 7.3 The Global Challenge 7.4 Advanced Care Planning and the General Practitioner 7.4.1 Patient Advocacy 7.4.2 Quality Framework 7.4.3 Multidisciplinary Teams 7.5 Knowledge and Skills Required of GPs at the End of Life References Chapter 8: Team Approaches – How They Can Be Made to Work 8.1 Introduction 8.2 Experiencing a Team Culture 8.3 Ownership and Mission Statements 8.4 Recruiting the Right Members 8.5 The Team Conference 8.6 Team Problems at End of Life 8.7 Conclusions References Chapter 9: Communication and Conflict Resolution – Managing Conversations. A Culturally Sensitive Model 9.1 Introduction 9.2 Conclusion References Part III: Medico-Legal Proposals Chapter 10: Advance Care Planning 10.1 What Is Advance Care Planning? 10.2 Advance Care Planning Conversations 10.3 Outputs of ACP 10.3.1 Patient-Driven Decision Making 10.3.2 Professionally Driven Decision Making 10.3.3 Clinical Management/Care Plans 10.3.4 Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) Documents 10.3.5 Emergency Healthcare Plans 10.3.6 Treatment Escalation Plans (TEPs) 10.4 ACP- an International Perspective 10.5 Ethical Issues in Advance Care Planning 10.5.1 Treatments and Interventions 10.5.2 Life Prolonging Treatments 10.5.3 Capacity 10.6 Does ACP Work? 10.7 Final Thoughts References Chapter 11: Importance of Training 11.1 Introduction 11.2 Training in Bein- Involved 11.3 Training in Developing Competency in Moral Judgement 11.4 Training in Communication 11.5 Training in Early Identification of Palliative Care Needs 11.6 Training for Inter-Professional Work and Civic Engagement References Chapter 12: Palliative Sedation – Is It a Real Dilemma? 12.1 Introduction 12.2 Palliative Sedation: What Is It That We Are Talking About? 12.3 Ethics and Palliative Sedation 12.4 Palliative Sedation, Nutrition and Hydration 12.5 Conclusion Bibliography Part IV: Implementing-Change Pathways Chapter 13: Engaging Patient Groups in End-of-Life 13.1 Patient Organisations 13.2 Patient Empowerment 13.3 Conclusion References Chapter 14: Developing Pathways Towards Improving End of Life Care and Advanced Planning 14.1 Introduction 14.2 Case Presentation: Developing Pathways for End of Life 14.3 Historical Context 14.4 Towards the EndCare Pathway 14.5 Defining Steps 14.5.1 Step 1 – Identifying the Problem 14.5.2 Step 2 – Organising the Retreat 14.5.3 Step 3: Organising a Path (Way) 14.6 Periodic Review Proposal 14.7 Results 14.8 Systems Approach 14.9 Quality Framework 14.10 Conclusion References Chapter 15: Conclusions Appendix: A Curriculum for the Harmonisation of End of Life Care Within Micro or Macro Systems EndCare, ERASMUS+ Project A Curriculum for Improving End of Life Care: An EndCare Erasmus+ Outcome Introduction Module 1 Module 2 Module 3 Module 4 Module 5 Module 6 Module 7