Ethical Challenges for Healthcare Practices at the End of Life: Interdisciplinary Perspectives (Philosophy and Medicine Book 141)

This book presents a collection of exclusively selected manuscripts on current ethical controversies related to professional practices from an interprofessional perspective. Insights are provided into the diversity of practices and viewpoints from different countries are merged in a unique way. The book contributes to the debate on social and legal issues regarding end-of-life practices such as organ donation, medically assisted dying and advance care planning. In addition, joint international author groups contributed exclusive chapters about European comparisons on end-of-life topics. The focus on country- and culture-specific aspects broadens the view on key issues and makes the book attractive for an international readership. The variety of approaches and methods used informs and inspires the development of new research and best-practice projects. Preface Part I: Contexts of Professional Practice at the End of Life Part II: Professional Standards at the End of Life Part III: Treatment Preferences and Professional Companionship at the End of Life Part IV: Joint Discussion Paper Acknowledgements Contents Chapter 1: Introduction 1.1 Health-Care Professions and End-of-Life Care 1.2 Professional Ethics at the End of Life References Part I: Contexts of Professional Practice at the End of Life Chapter 2: Palliative Care Between Certainty and Uncertainty. Which Philosophy of Death at the End of Life? 2.1 Introduction 2.2 Why Vladimir Jankélévitch? 2.3 Death Is a Paradox 2.4 Between Knowledge and Awareness, the Relationship to Death: First, Second and Third Person References Chapter 3: An Ethical Discussion of (Un-)Certainty at the End of Life: Exemplification by Means of Continuous Deep Sedation and Advance Directives 3.1 Introduction 3.2 (Un)Certainty at the End of Life: The Examples of Continuous Deep Sedation and Advance Directives 3.2.1 Continuous Deep Sedation 3.2.1.1 United Kingdom 3.2.1.2 France 3.2.1.3 Germany 3.2.2 Advance Directives 3.2.2.1 United Kingdom 3.2.2.2 France 3.2.2.3 Germany 3.3 Results of the International Comparison: A Cluster of (Un)Certainties 3.3.1 Continuous Deep Sedation: Epistemic, Diagnostic and Prognostic (Un)Certainty 3.3.2 Advance Directives: Epistemic, Linguistic, Relational and Existential (Un)Certainty 3.4 Discussion in the Light of Professional Medical Ethics 3.4.1 Dealing with (Un)Certainties in the Realm of Continuous Deep Sedation 3.4.2 Dealing with (Un)Certainties in the Realm of Advance Directives 3.4.3 General Perspectives on Dealing with (Un)Certainty 3.5 Conclusion Appendixes References Chapter 4: Why Me? – The Concept of Physicians’ Spiritual Self-Care: A Contribution to Professional and Organisational Ethics 4.1 Why Me? – An Introduction to Spiritual Self-Care 4.2 The Concept of Spiritual Care 4.2.1 Conceptual Clarifications 4.2.2 Spiritual Care in the Health-Care Professional-Patient Relationship 4.3 The Concept of Spiritual Self-Care 4.3.1 Theoretical and Empirical Underpinning 4.3.2 Practical Implications 4.4 Spiritual Self-Care in the Light of Professional Ethics 4.5 Spiritual Self-Care in the Light of Organisational Ethics 4.6 Why Not Me? – A Call for Spreading the Concept of Spiritual Self-Care References Part II: Professional Standards at the End of Life Chapter 5: The Role of Time in End-of-Life Decision-Making at the Intensive Care Unit in France and Germany: Qualitative-Empirical Data and Ethical Reflection 5.1 Background 5.1.1 The French Framework for EOL Decision-Making 5.1.2 The German Framework for EOL Decision-Making 5.1.3 EOL Practices in the ICU 5.1.4 The Issue of Time in EOL Decision-Making in the ICU: A Comparative Perspective 5.2 The Issue of Time in ICU Decision-Making in France 5.2.1 Design and Methods 5.2.2 Results 5.2.2.1 Determining the “Good Time” for a Decision to WD and/or WH Treatment in the ICU 5.2.2.2 “Modulating” the Timing of Death: Is delaying or Accelerating Acceptable at the Request of Family Members? 5.2.2.3 Terminal Weaning or Terminal Extubation: How Long Does It Take for the Patient to Die? 5.3 The Issue of Time in ICU Decision-Making in Germany 5.3.1 Design and Methods 5.3.2 Results 5.3.2.1 Being in Intensive Care for a Long Time 5.3.2.2 The Timing of Decision-Making 5.4 Discussion 5.5 Conclusions References Chapter 6: Brazilian Medical Professional Ethics in Palliative and End-of-Life Care – Advances and Expectancies 6.1 Introduction 6.2 Background 6.3 End of Life for Brazilians 6.4 Medical Practice and Professional Ethics 6.5 Brazilian Physicians and the End-of-Life Care 6.6 The Euthanasia and Assisted Suicide Discussion 6.7 Conclusion References Chapter 7: Should the Family Be Allowed to Override a Patient’s Decision to Become an Organ Donor after Death? 7.1 Introduction 7.2 Beneficence vs Autonomy 7.3 Relational Autonomy 7.4 Is Consent Valid Posthumously? 7.5 Why Should Families’ Views Be Considered? 7.6 Reasons Families Refuse to Consent 7.7 Removing Barriers to Organ Donation 7.8 Other Strategies 7.9 Families’ Duty Towards Their Loved Ones After Death 7.10 Redefining Death 7.11 Conclusion References Chapter 8: Comparison of Self-Assessed Competencies Regarding End-of-Life Ethics between Physicians and Nursing Staff 8.1 Introduction 8.2 Methods 8.3 Results 8.3.1 Sample, Comprehensibility and Return Rate 8.3.2 Frequency of Ethically Relevant Decision Situations 8.3.3 Ethical Knowledge in the Area of End-of-Life Ethics 8.3.4 Ethical Content in Medical Studies and Vocational Training 8.3.5 Burden of Ethical Decision-Making and Urgency for Further Education 8.4 Discussion References Chapter 9: Blurring Boundaries at the End of Life in Home Care: A Look at Germany, Switzerland and the United Kingdom in the Light of Care Ethics 9.1 Introduction 9.2 Legal and Theoretical Background 9.2.1 Comparison of Support Structures in Germany, Switzerland and the United Kingdom 9.2.2 Care Ethics and Care Work 9.3 The Situation of Informal Caregivers in Germany, Switzerland and the United Kingdom – Two Cases 9.3.1 Informal Caregiving in Dementia: The Blurred Boundaries Between Becoming a Caregiver, Becoming Aware of it and Realising the Necessity of Support 9.3.1.1 Comparison of the German and British National Dementia Strategy in the Context of Informal Caregiving 9.3.1.2 What Does Informal Care Work Mean in the Context of Dementia? 9.3.2 Blurring the Boundaries of Family Caregiving: The Case of Employment of Family Informal Caregivers in Switzerland 9.3.2.1 Is Employment Permissible from a Care Ethics Perspective? 9.3.2.2 Can Employment Be Care? 9.4 Managing Blurred Boundaries: Awareness Promotion, Supportive Structures, and Care Ethical Attitude 9.4.1 Between Care Work for Others and for Oneself 9.4.2 Collaboration and Co-operation, or Taking Advantage of Blurred Boundaries 9.4.3 Trust: The Underlying Care Ethical Attitude 9.5 Blurred Boundaries of Care: A European Perspective 9.6 Conclusion and Outlook References Part III: Treatment Preferences and Professional Companionship at the End of Life Chapter 10: Maltese Perspectives on Breaking Bad News in Cancer: An Assessment of Patients’ Preferences 10.1 Introduction 10.2 Patients and Methods 10.2.1 Aims and Objectives 10.2.2 Participants and Procedures 10.2.3 Outcome Measures 10.2.4 Demographics and Medical Data 10.2.5 Statistical Analysis 10.3 Results 10.3.1 Measure of Patient Preferences (MPP) Questionnaire 10.3.2 Control Preferences Scale (CPS) 10.4 Discussion 10.5 Conclusion References Chapter 11: Socio-economic Position and Access to Specialist Palliative Care: Evidence from the UK 11.1 Introduction 11.2 Background 11.2.1 Socio-economic Inequities in Access to Health Care 11.2.2 Specialist Palliative Care in the UK 11.3 Evidence from the UK 11.3.1 Socio-economic Inequities in Use of Specialist Palliative Care in the UK 11.3.2 Which Factors Influence Access in the UK 11.3.2.1 Patients 11.3.2.2 Professionals 11.3.2.3 Services 11.4 A Theoretical Approach to Access 11.4.1 Conceptualising Access as ‘Candidacy’ 11.4.1.1 The Review of NHS Services 11.4.2 Becoming a ‘Candidate’ for Specialist Palliative Care 11.4.3 Uniting Evidence on Access and Use of Care 11.4.4 Limitations to the ‘Candidacy’ Model 11.5 Conclusion References Chapter 12: Professional Nurses’ Role in End-of-Life Care. Ethical Reflections on Patient-Nurse Interaction and Nurses’ Decision-Making in Breathlessness Situations 12.1 Background 12.1.1 End-of-Life Care – Ethical Assumptions 12.1.2 Nurses’ Professional Role – A Perspective from the Interaction Theory 12.2 Study: Nurses Decision-Making in Breathlessness Situations 12.2.1 Aim and Research Question 12.2.2 Methodology 12.2.3 Results 12.2.3.1 Perspective 1: Patient-Nurse Interaction in Breathlessness Situations Nursing Measures in the Case of Breathlessness 12.2.4 Participating Actors in Respiratory Distress 12.2.5 Prioritisation and Decision-Making 12.2.5.1 Perspective 2: Simultaneity as a Condition of Nursing Care 12.3 Discussion 12.4 Conclusion References Part IV: Joint Discussion Paper Chapter 13: Ethics and (Inter-)Professionalism in Health Care at the End of Life: A Position Paper Index