图书简介
Many people who are experiencing unacceptable suffering or deterioration in the present, or who fear them in the near future, do not know their full range of options to hasten death. This is particularly true if they live in jurisdictions that do not allow a physician assisted death - over forty jurisdictions in the U.S. and most countries across the world. Though VSED is readily available, and not illegal, most people are unaware of it as an option. The information in this book is vital to those considering their options either hypothetically or in real time, providing an integrated, balanced, and nuanced exploration of VSED with contributions from legal, medical, and ethical experts.
Foreword; Preface; Acknowledgments; Contributors; Introduction ; Part I. Voluntarily Stopping Eating and Drinking (VSED) by People with Decision-Making Capacity ; 1. Illustrative Cases; 1.1 Al (Amyotrophic Lateral Sclerosis): Looking for Options to Hasten Death; 1.2 Bill (Breast Cancer): Preference for Medical Aid in Dying; 1.3 Mrs. H. (Early Alzheimer’s Disease): How Best to Time VSED; 1.4 G.W. (Lung Cancer): Family and Staff Conflict ; 2. Clinical Issues; 2.1 Background Issues-Palliative Care and Hospice; 2.2. Background Issues-Unacceptable Suffering and Deterioration; 2.3 Evaluation of Requests for VSED; 2.4 VSED-Key Practical Matters to Consider in Advance; 2.5 Requirements to Initiate VSED for Patients with Decision-Making Capacity; 2.6 Formal Advance Care Planning; 2.7 Managing Symptoms and Complications Once VSED Is Initiated; 2.8 Impact of Culture on VSED; 2.9 Advantages of VSED as an Option to Achieve a Desired Death; 2.10 Disadvantages and Challenges of VSED as an Option to Achieve a Desired Death; 2.11 Revisiting the Initial Cases ; 3. Ethical Issues; 3.1 Introduction; 3.2 Refusing Lifesaving Treatment; 3.3 Suicide; 3.4 A Different Comparison: Medical Aid in Dying; 3.5 Information, Encouragement, Persuasion; 3.6 Conclusions; 3.7 Ethical Issues Review of Initial Cases ; 4. Legal Issues; 4.1 Introduction; 4.2 VSED Is Widely Perceived to Be Legal; 4.3 A Patient’s Right to VSED Is Settled Law; 4.4 Right to Refuse Includes the Right to VSED; 4.5 Assisted Suicide Laws Generally Do Not Apply; 4.6 Abuse and Neglect Laws Generally Do Not Apply; 4.7 Other Issues for Patients and Families-Life Insurance; 4.8 Other Issues for Clinicians-Informed Consent; 4.9 Other Issues for Clinicians-Conscience- Based Objections; 4.1 Revisiting the Initial Cases ; 5. Institutional Issues; 5.1 Introduction; 5.2 Published Data on Patient Experience of VSED in Institutional Settings; 5.3 Institutional Barriers to VSED; 5.4 Variations in State Laws around Resident Rights; 5.5 Role of Hospice in Buffering Conflicts Between Interests of Resident and LTC Facility; 5.6 Approach to Care of Persons Requesting VSED in Institutional Settings; 5.7 Specific Care Issues for Residents Who VSED in Institutional Settings; 5.8 Moral Distress and Conscience-Based Objections; 5.9 Conclusion-Institutional Care Issues; 5.10 Case Comments from an Institutional Perspective ; 6. Best Practices, Enduring Challenges, and Opportunities for VSED; 6.1 Best Practices; 6.2 Enduring Challenges; 6.3 Opportunities ; Part II. Stopping Eating and Drinking by Advance Directive (SED by AD) for Persons Without Decision-Making Capacity ; 7. Illustrative Cases; 7.1 Mrs. H. (Early Alzheimer’s): Speculation about the Challenge of Waiting; 7.2 Steve (Early Dementia): Patient and Family Challenges; 7.3 Patricia (Moderate Dementia): Hastening Death by SED versus Preemptive Suicide; 7.4 Charles (Severe Dementia): No Assistance with Oral Feeding ; 8. Clinical Issues; 8.1. General Approach When Capacity Is Lost; 8.2. Background Issues; 8.3. Advance Care Planning; 8.4. Practical Aspects of Stopping Eating and Drinking by Advance Directive (SED by AD) and Comfort Feeding Only (CFO); 8.5. Limits of Palliation with Comfort Feeding Only (CFO); 8.6. Advantages of SED by AD; 8.7. Disadvantages of SED by AD; 8.8. Return to the Cases ; 9. Ethical Issues; 9.1 Introduction; 9.2 Change of Mind; 9.3 Is Feeding Fundamentally Different?; 9.4 Burdens of Survival on Family and Family Caregivers; 9.5 Caregiver and Proxy Distress; 9.6 The Odds of Implementation and the Attraction of Preemptive Measures; 9.7 Comparison with Comfort Feeding Only; 9.8 Conclusions; 9.9 Ethical Issues Review of Initial Cases ; 10. Legal Issues; 10.1 Introduction; 10.2 There Is Little On-Point Precedent; 10.3 Draft the Advance Directive Carefully; 10.4 Non-Statutory Advance Directives Potentially Allow SED by AD; 10.5 Some Advance Directive Statutes Permit SED by AD; 10.6 Many Advance Directive Statutes Require Triggering Conditions; 10.7 Circumventing Home State Law with Reciprocity Rules; 10.8 Inadvertent Revocations and Vetoes; 10.9 Ulysses Clauses May Solve the Incapacitated Revocation Problem; 10.10 Appointed Health Care Agents; 10.11 Default Surrogates and Guardians; 10.12 Conscience Based Objection; 10.13 Conclusion; 10.14 Return to the Cases ; 11. Institutional Issues; 11.1. Introduction; 11.2. Dementia Worry Is Common in Older Adults; 11.3. Challenges of SED by AD in Advanced Dementia Are Most Apt to Manifest in Institutional LTC Settings; 11.4. Resistance to Implementation of Dementia Directives Limiting Oral Nutrition and Hydration in LTC Settings; 11.5. Ethical Rationale for Dementia Directives Limiting Oral Nutrition and Hydration in LTC Settings; 11.6. Conclusion-ADs for SED in Institutional LTC Settings; 11.7. Case Comments from an Institutional Perspective ; 12. Best Practices, Enduring Challenges, and Opportunities for SED by AD; 12.1 Best Practices; 12.2 Enduring Challenges; 12.3 Opportunities ; Appendices; A. Recommended Elements of an Advance Directive for Stopping Eating and Drinking (AD for SED); B. Sample Advance Directives for SED; C. Cause of Death on Death Certificates with VSED or SED by AD; D. Position Statements and Clinical Guidance; E. Personal Narratives; F. Glossary ; Index
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