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

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 Eight illustrative, previously unpublished real cases are included, receiving pragmatic analysis in each chapter.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.

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.

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
4.10 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