Voluntarily Stopping Eating and Drinking

Timothy E. Quill, MD is Professor of Medicine, Psychiatry, Medical Humanities and Nursing at the University of Rochester Medical Center (URMC). He was Past President of the American Academy of Hospice and Palliative Medicine, the Founding Director of the URMC Palliative Care Program, and the initial Director of the URMC Schyve Center for Biomedical Ethics. Dr. Quill is the author of "Death with Dignity: A Case of Individualized Decision Making" (1991) in the New England Journal of Medicine, and he was the lead physician plaintiff in the New York legal case challenging the law prohibiting physician-assisted death heard in 1997 by the U.S. Supreme Court (Quill v. Vacco). He is the author of 8 books and over 150 peer reviewed articles on various aspects of palliative care, hospice, primary care, medical ethics, and end-of-life policy.Paul T. Menzel, PhD is Professor of Philosophy emeritus, Pacific Lutheran University. He has published widely on moral questions in health economics and health policy, including Strong Medicine: The Ethical Rationing of Health Care (OUP, 1990), and (as co-editor) Prevention vs. Treatment: What's the Right Balance? (OUP, 2011). He has been a visiting scholar at Kennedy Institute of Ethics, Rockefeller Center-Bellagio, Brocher Foundation, Chinese University of Hong Kong, and Monash University. He is a member of the Advisory Board of The Completed Life Initiative and serves on The Hastings Center's work group for its project on Dementia and the Ethics of Choosing When to Die.Thaddeus M. Pope, JD, PhD, HEC-C is Professor of Law at Mitchell Hamline School of Law in Saint Paul, Minnesota. A foremost expert on medical law and clinical ethics, he maintains a special focus on patient rights and healthcare decision-making. Ranked among the Top 20 most cited health law scholars in the United States, Professor Pope has over 225 publications in leading medical journals, bioethics journals, and law reviews. He co-authors the definitive treatise The Right to Die: The Law of End-of-Life Decisionmaking (Wolters Kluwer, 2020), and he runs the Medical Futility Blog (with over four million page-views). Prior to joining academia, he practiced at Arnold & Porter and clerked on the U.S. Court of Appeals for the Seventh Circuit.Judith K. Schwarz, PhD, RN is the Clinical Director of End of Life Choices, New York. She has for many years provided end-of-life consultation to New Yorkers and callers from other states who seek information about options and choices that permit personal control of the circumstances and timing of death. In addition to publishing in nursing and ethics journals, she provides frequent lectures about end of life decision making to lay and professional audiences. Working with legal and palliative care colleagues, she developed the End of Life Choices New York Dementia Directive which has been completed by hundreds of New Yorkers.

This book is of high quality and useful in areas of the country where VSED is not common or where demand is increasing. While other books on this topic have been published, this one is most up to date and exhaustive in describing the ethical, legal, and practical considerations.

• Foreword Preface Acknowledgments Contributors IntroductionPart 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 Conflict2. Clinical Issues 2.1 Background IssuesDLPalliative Care and Hospice 2.2. Background IssuesDLUnacceptable Suffering and Deterioration 2.3 Evaluation of Requests for VSED 2.4 VSEDDLKey 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 Cases3. 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 Cases4. 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 FamiliesDLLife Insurance 4.8 Other Issues for CliniciansDLInformed Consent 4.9 Other Issues for CliniciansDLConscience- Based Objections 4.10 Revisiting the Initial Cases5. 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 ConclusionDLInstitutional Care Issues 5.10 Case Comments from an Institutional Perspective6. Best Practices, Enduring Challenges, and Opportunities for VSED 6.1 Best Practices 6.2 Enduring Challenges 6.3 OpportunitiesPart II. Stopping Eating and Drinking by Advance Directive (SED by AD) for Persons Without Decision-Making Capacity7. 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 Feeding8. 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 Cases10. 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 Cases11. 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. ConclusionDLADs for SED in Institutional LTC Settings 11.7. Case Comments from an Institutional Perspective12. Best Practices, Enduring Challenges, and Opportunities for SED by AD 12.1 Best Practices 12.2 Enduring Challenges 12.3 OpportunitiesAppendices 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. GlossaryIndex