Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death

by Timothy E. Quill (Editor), Paul T. Menzel (Editor), Thaddeus Pope (Editor), Judith K. Schwarz (Editor)

Overview

In the 21st century, people in the developed world are living longer. They hope they will have a healthy longer life and then die relatively quickly and peacefully. But frequently that does not happen. While people are living healthy a little longer, they tend to live sick for a lot longer. And at the end of being sick before dying, they and their families are frequently faced with daunting decisions about whether to continue life prolonging medical treatments or whether to find meaningful and forthright ways to die more easily and quickly.

In this context, some people are searching for more and better options to hasten death. They may be experiencing unacceptable suffering in the present or may fear it in the near future. But they do not know the full range of options legally available to them. Voluntary stopping eating and drinking (VSED), though relatively unknown and poorly understood, is a widely available option for hastening death. VSED is legally permitted in places where medical assistance in dying (MAID) is not. And unlike U.S. jurisdictions where MAID is legally permitted, VSED is not limited to terminal illness or to those with current decision-making capacity.

VSED is a compassionate option that respects patient choice. Despite its strongly misleading image of starvation, death by VSED is typically peaceful and meaningful when accompanied by adequate clinician and/or caregiver support. Moreover, the practice is not limited to avoiding unbearable suffering, but may also be used by those who are determined to avoid living with unacceptable deterioration such as severe dementia. But VSED is "not for everyone."

This volume provides a realistic, appropriately critical, yet supportive assessment of the practice. Eight illustrative, previously unpublished real cases are included, receiving pragmatic analysis in each chapter. The volume's integrated, multi-professional, multi-disciplinary character makes it useful for a wide range of readers: patients considering present or future end-of-life options and their families, clinicians of all kinds, ethicists, lawyers, and institutional administrators. Appendices include recommended elements of an advance directive for stopping eating and drinking in one's future if and when decision making capacity is lost, and what to record as cause of death on the death certificates of those who hasten death by VSED.

Product Details

ISBN-13:	9780190080730
Publisher:	Oxford University Press
Publication date:	08/10/2021
Pages:	312
Sales rank:	830,420
Product dimensions:	9.40(w) x 6.30(h) x 1.00(d)

About the Author

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.

Table of Contents

ForewordPrefaceAcknowledgmentsContributorsIntroduction
Part I. Voluntarily Stopping Eating and Drinking (VSED) by People with Decision-Making Capacity
1. Illustrative Cases1.1 Al (Amyotrophic Lateral Sclerosis): Looking for Options to Hasten Death1.2 Bill (Breast Cancer): Preference for Medical Aid in Dying1.3 Mrs. H. (Early Alzheimer's Disease): How Best to Time VSED1.4 G.W. (Lung Cancer): Family and Staff Conflict
2. Clinical Issues2.1 Background Issues—Palliative Care and Hospice2.2. Background Issues—Unacceptable Suffering and Deterioration2.3 Evaluation of Requests for VSED2.4 VSED—Key Practical Matters to Consider in Advance2.5 Requirements to Initiate VSED for Patients with Decision-Making Capacity2.6 Formal Advance Care Planning2.7 Managing Symptoms and Complications Once VSED Is Initiated2.8 Impact of Culture on VSED2.9 Advantages of VSED as an Option to Achieve a Desired Death2.10 Disadvantages and Challenges of VSED as an Option to Achieve a Desired Death2.11 Revisiting the Initial Cases
3. Ethical Issues3.1 Introduction3.2 Refusing Lifesaving Treatment3.3 Suicide3.4 A Different Comparison: Medical Aid in Dying3.5 Information, Encouragement, Persuasion3.6 Conclusions3.7 Ethical Issues Review of Initial Cases
4. Legal Issues4.1 Introduction4.2 VSED Is Widely Perceived to Be Legal4.3 A Patient's Right to VSED Is Settled Law4.4 Right to Refuse Includes the Right to VSED4.5 Assisted Suicide Laws Generally Do Not Apply4.6 Abuse and Neglect Laws Generally Do Not Apply4.7 Other Issues for Patients and Families—Life Insurance4.8 Other Issues for Clinicians—Informed Consent4.9 Other Issues for Clinicians—Conscience- Based Objections4.10 Revisiting the Initial Cases
5. Institutional Issues5.1 Introduction5.2 Published Data on Patient Experience of VSED in Institutional Settings5.3 Institutional Barriers to VSED5.4 Variations in State Laws around Resident Rights5.5 Role of Hospice in Buffering Conflicts Between Interests of Resident and LTC Facility5.6 Approach to Care of Persons Requesting VSED in Institutional Settings5.7 Specific Care Issues for Residents Who VSED in Institutional Settings5.8 Moral Distress and Conscience-Based Objections5.9 Conclusion—Institutional Care Issues5.10 Case Comments from an Institutional Perspective
6. Best Practices, Enduring Challenges, and Opportunities for VSED6.1 Best Practices6.2 Enduring Challenges6.3 Opportunities
Part II. Stopping Eating and Drinking by Advance Directive (SED by AD) for Persons Without Decision-Making Capacity
7. Illustrative Cases7.1 Mrs. H. (Early Alzheimer's): Speculation about the Challenge of Waiting7.2 Steve (Early Dementia): Patient and Family Challenges7.3 Patricia (Moderate Dementia): Hastening Death by SED versus Preemptive Suicide7.4 Charles (Severe Dementia): No Assistance with Oral Feeding
8. Clinical Issues8.1. General Approach When Capacity Is Lost8.2. Background Issues8.3. Advance Care Planning8.4. 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 AD8.7. Disadvantages of SED by AD8.8. Return to the Cases
9. Ethical Issues9.1 Introduction9.2 Change of Mind9.3 Is Feeding Fundamentally Different? 9.4 Burdens of Survival on Family and Family Caregivers9.5 Caregiver and Proxy Distress9.6 The Odds of Implementation and the Attraction of Preemptive Measures9.7 Comparison with Comfort Feeding Only9.8 Conclusions9.9 Ethical Issues Review of Initial Cases
10. Legal Issues10.1 Introduction10.2 There Is Little On-Point Precedent10.3 Draft the Advance Directive Carefully10.4 Non-Statutory Advance Directives Potentially Allow SED by AD10.5 Some Advance Directive Statutes Permit SED by AD10.6 Many Advance Directive Statutes Require Triggering Conditions10.7 Circumventing Home State Law with Reciprocity Rules10.8 Inadvertent Revocations and Vetoes10.9 Ulysses Clauses May Solve the Incapacitated Revocation Problem10.10 Appointed Health Care Agents10.11 Default Surrogates and Guardians10.12 Conscience Based Objection10.13 Conclusion10.14 Return to the Cases
11. Institutional Issues11.1. Introduction11.2. "Dementia Worry" Is Common in Older Adults11.3. Challenges of SED by AD in Advanced Dementia Are Most Apt to Manifest in Institutional LTC Settings11.4. Resistance to Implementation of Dementia Directives Limiting Oral Nutrition and Hydration in LTC Settings11.5. Ethical Rationale for Dementia Directives Limiting Oral Nutrition and Hydration in LTC Settings11.6. Conclusion—ADs for SED in Institutional LTC Settings11.7. Case Comments from an Institutional Perspective
12. Best Practices, Enduring Challenges, and Opportunities for SED by AD12.1 Best Practices12.2 Enduring Challenges12.3 Opportunities
AppendicesA. Recommended Elements of an Advance Directive for Stopping Eating and Drinking (AD for SED)B. Sample Advance Directives for SEDC. Cause of Death on Death Certificates with VSED or SED by ADD. Position Statements and Clinical GuidanceE. Personal NarrativesF. Glossary
Index

Editorial Reviews

"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." — Leah D Ward, Doody

"This is an extremely well-organized, practical guide to the available options for self-determination with respect to experiencing a peaceful death." — E.R. Paterson, CHOICE Connect, Vol. 59 No. 8

"This book is an essential resource for those exploring their options for palliative care. It provides authoritative advice and wisdom about whether and how to voluntarily stop eating and drinking, a path that that may be the best choice for some who are approaching the end of their lives." — Robert Truog, Director, Harvard Center for Bioethics

"Much attention has been directed to Medical Assistance in Dying (MAiD) as a means of hastening death for persons with serious and debilitating medical conditions, yet other methods such as Voluntarily Stopping Eating and Drinking (VSED) have flown under the radar. This volume is an important and timely remedy for that neglect. Many who do not qualify for MAiD or find it unacceptable may wish to consider VSED as an alternative means of hastening their death. VSED also raises a number of important clinical ethical and legal issues, especially when stipulated through an advance directive. These issues are thoroughly explored in this excellent volume. For anyone interested in end-of-life options, this is a must read." — Wayne Sumner, University Professor Emeritus, University of Toronto

From the Publisher

Reviewer: Leah D Ward, MSN, MA, A-GNP-C, ACHPN (Aspire Health)
Description: This book covers the ethics, prevalence, legal aspects, and institutional constraints of Voluntarily Stopping Eating and Drinking (VSED). Each chapter ends with bulleted bottom line points to assist readers in summarizing takeaway points to consider. A table is included to summarize the FAST stages of dementia, physiological changes in each stage, and how long each stage may last to help readers understand the progression of dementia, a diagnosis for which a patient may choose VSED.
Purpose: The book's purpose is to discuss VSED cases throughout the world, how courts in various nations have ruled when VSED was in question, applicable case studies and difficulties that have arisen, how VSED can be arranged and limitations of institutions to uphold patient wishes, how advance directives can assist in expressing one's wishes regarding VSED, and how to explore the option in enough depth to assist clinicians, ethicists, administrators, and policymakers in making a decision about VSED from an ethical and practical perspective. The book meets the objectives well with chapters dedicated to the many considerations.
Audience: According to the preface, this book is written to assist clinicians, ethicists, administrators, and policymakers in their decisions when reviewing VSED cases or requests for VSED. The book is also important for patients and families interested in learning more about the option. It is also a critical and often little-known subject matter in the field of palliative care that should be added to certificate programs in palliative care. This book will be helpful in expanding the curriculums of such programs.
Features: The book reviews multiple case studies, court cases, and legislation examples around the world to explore the major issues and the procedure for how one is permitted to carry through with their wishes after psychiatric and palliative care evaluations. Rulings in nations throughout the world are described, including the "anchoring principles" of these cases, which cite that patients have the right to refuse medical and personal care, making VSED ethical in terms of what is already permitted and considered to be irrefutable. Appendices include examples of advanced directives and the second half of the book explores how advanced directives can permit VSED or comfort feeding only, where the patient eats only when and what they want without regard to the medical consequences that may cause others to force feed a patient who would not want to prolong their life when complex chronic disease has caused severe debilitation. Additional articles and books are listed and a table includes the FAST stages of dementia, what occurs in each stage, and how long it may last. While alternatives such as medical assistance in dying and palliative sedation are listed and discussed, more attention should have been given to simply forgoing antibiotics, a viable alternative that is sometimes easier for families and healthcare personnel to accept. As many with chronic disease live to the latest stages of the disease through the continual use of antibiotics, this is an option that should have been explored in more depth.
Assessment: 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.

Doody's Review Service