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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Page xiii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Physician-Assisted Death: Scanning the Landscape: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25131.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Physician-Assisted Death: Scanning the Landscape PROCEEDINGS OF A WORKSHOP Rebecca A. English, Catharyn T. Liverman, Caroline M. Cilio, and Joe Alper, Rapporteurs Board on Health Sciences Policy Health and Medicine Division PREPUBLICATION COPY: UNCORRECTED PROOFS

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by The Greenwall Foundation. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25131 Additional copies of this publication are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2018 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2018. Physician-assisted death: Scanning the landscape: Proceedings of a workshop. Washington, DC: The National Academies Press. doi:#https://doi.org/10.17226/25131. PREPUBLICATION COPY: UNCORRECTED PROOFS

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY: UNCORRECTED PROOFS

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY: UNCORRECTED PROOFS

PLANNING COMMITTEE FOR A WORKSHOP ON PHYSICIAN-ASSISTED DEATH: SCANNING THE LANDSCAPE AND POTENTIAL APPROACHES1 JAMES CHILDRESS (Chair), University of Virginia ANTHONY BACK, University of Washington NANCY BERLINGER, The Hastings Center LINDA GANZINI, Oregon Health and Science University SCOTT HALPERN, University of Pennsylvania BARBARA JONES, The University of Texas at Austin JOANNE LYNN, Altarum Institute DAVID MAGNUS, Stanford University DAVID ORENTLICHER, University of Nevada, Las Vegas RICHARD PAYNE, Duke Divinity School JAMES TULSKY, Dana-Farber Cancer Institute NEIL WENGER, University of California, Los Angeles Health and Medicine Division Staff REBECCA A. ENGLISH, Program Officer CATHARYN T. LIVERMAN, Senior Program Officer ANNE CLAIBORNE, Senior Program Officer (until February 2018) CAROLINE M. CILIO, Senior Program Assistant DANIEL CESNALIS, Financial Associate ANDREW M. POPE, Director, Board on Health Sciences Policy Consultant JOE ALPER, Consulting Writer 1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the rapporteurs and the institution. PREPUBLICATION COPY: UNCORRECTED PROOFS v

REVIEWERS This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We thank the following individuals for their review of this proceedings: ALEXANDER M. CAPRON, University of Southern California MARK A. HALL, Wake Forest University STEPHANIE HARMAN, Stanford Health Care JEFFREY KAHN, Johns Hopkins University LEIF SOLBERG, Health Partners Institute MATTHEW K. WYNIA, University of Colorado Anschutz Medical Center Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by HUDA AKIL, University of Michigan, and DONALD STEINWACHS, Johns Hopkins University. They were responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. PREPUBLICATION COPY: UNCORRECTED PROOFS vii

Contents 1 INTRODUCTION 1-1 Workshop Focus and Content, 1-2 Terminology, 1-4 Organization of the Proceedings, 1-4 References, 1-5 2 CONCEPTUAL, LEGAL, AND ETHICAL CONSIDERATIONS IN 2-1 PHYSICIAN-ASSISTED DEATH Concepts and Terms in Physician-Assisted Death, 2-3 Legal Frameworks, 2-7 Slippery Slope, 2-11 Reflections on the Ethics of Physician-Assisted Death, 2-15 Discussion, 2-24 References, 2-27 3 EXPERIENCES WITH AND REFLECTIONS ON 3-1 PHYSICIAN-ASSISTED DEATH IN THE UNITED STATES The Oregon Experience, 3-2 Other U.S. Experiences, 3-10 References, 3-14 4 EXPERIENCES WITH AND REFLECTIONS ON 4-1 PHYSICIAN-ASSISTED DEATH INTERNATIONALLY Euthanasia in the Netherlands, 4-2 The Canadian Experience, 4-7 References, 4-9 5 IMPLEMENTATION AND PRACTICE OF 5-1 PHYSICIAN-ASSISTED DEATH Safeguards, 5-2 Access, 5-4 Physician Perspectives, 5-6 Reflections on Preparing for and Responding to Legalization in California, 5-11 Data Collection and Public Reporting, 5-14 References, 5-17 6 PHYSICIAN-ASSISTED DEATH IN THE CONTEXT OF LONG-TERM 6-1 SERVICES AND SUPPORTS, PALLIATIVE CARE, AND HOSPICE Long-Term Services and Supports, 6-2 Hospice and Palliative Care, 6-6 Discussion, 6-14 References, 6-16 PREPUBLICATION COPY: UNCORRECTED PROOFS ix

7 REFLECTIONS ON THE WORKSHOP AND EVIDENTIARY GAPS 7-1 Session One Reflections: Evidence and Terms of Discussion, 7-1 Session Two Reflections: Provider Experiences and Approaches, 7-2 Session Three Reflections: Physician-Assisted Death in the Broader Context, 7-3 Session Four Reflections: Data Collection in the United States and Other Countries, 7-5 Data Collection, 7-5 Research and Further Discussions, 7-6 APPENDIXES A Workshop Agenda A-1 B Biographical Sketches of Workshop Speakers and Planning Committee Members B-1 PREPUBLICATION COPY: UNCORRECTED PROOFS x

Boxes, Figures, and Tables BOXES 1-1 Statement of Task, 1-3 3-1 Brittany Maynard and Dan Diaz, 3-9 FIGURES 4-1 Frequency of euthanasia, physician-assisted suicide, and other end-of-life decisions in the Netherlands, 4-3 4-2 Number of cases of euthanasia and physician-assisted suicide, reported and total, in the Netherlands, 4-4 4-3 Source of suffering in explicit euthanasia requests and euthanasia cases in 2016 in the Netherlands, 4-5 4-4 Estimates of requests and granted requests from psychiatric patients in the Netherlands, 4-5 5-1 Potential patient navigator system for physician-assisted death, 5-5 5-2 Google searches in the United States related to end of life, 2012–2017, 5-7 6-1 Federal funding for the Older Americans Act (OAA), Medicare expenditures, and the population of Americans age 65 and older, 6-4 6-2 Primary values of hospice physician-assisted death policies, 6-13 TABLES 3-1 Oregon Health Care Practitioners’ Attitudes Toward Oregon Death with Dignity Act (ODDA) or Physician-Assisted Death, 3-7 5-1 Physician-Sourced Data in the Six Jurisdictions Where Physician-Assisted Death is Legal, 5-14 5-2 Patient-Sourced Data in the Six Jurisdictions Where Physician-Assisted Death is Legal, 5-15 5-3 Pharmacist-Sourced Data in the Six Jurisdictions Where Physician-Assisted Death is Legal, 5-15 PREPUBLICATION COPY: UNCORRECTED PROOFS xi

Acronyms and Abbreviations ALS amyotrophic lateral sclerosis DSM Diagnostic and Statistical Manual EOLOA California’s End of Life Option Act MRI magnetic resonance imaging ODDA Oregon Death with Dignity Act OECD Organisation for Economic Co-operation and Development POLST Physician Order for Life-Sustaining Treatment PREPUBLICATION COPY: UNCORRECTED PROOFS xiii

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The question of whether and under what circumstances terminally ill patients should be able to access life-ending medications with the aid of a physician is receiving increasing attention as a matter of public opinion and of public policy. Ethicists, clinicians, patients, and their families debate whether physician-assisted death ought to be a legal option for patients. While public opinion is divided and public policy debates include moral, ethical, and policy considerations, a demand for physician-assisted death persists among some patients, and the inconsistent legal terrain leaves a number of questions and challenges for health care providers to navigate when presented with patients considering or requesting physician-assisted death.

To discuss what is known and not known empirically about the practice of physician-assisted death, the National Academies of Sciences, Engineering, and Medicine convened a 2-day workshop in Washington, DC, on February 12–13, 2018. This publication summarizes the presentations and discussions from the workshop.

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