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Introduction¹

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.

Eight U.S. jurisdictions have authorized physician-assisted death through legislation, ballot initiative, or state Supreme Court decisions—

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¹ The planning committee’s role was limited to planning the workshop, and the Proceedings of a Workshop was prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual presenters and participants, and are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus.

Oregon, Washington, Montana,² Vermont, California, Colorado,³ Washington, DC,⁴ and Hawaii⁵ (Emanuel et al., 2016).

To discuss what is known and not known empirically about the practice of physician-assisted death, the Board on Health Sciences Policy of the National Academies of Sciences, Engineering, and Medicine (the National Academies) convened a 2-day workshop in Washington, DC, on February 12–13, 2018 (see Box 1-1 for the Statement of Task). The workshop was sponsored by The Greenwall Foundation.

In his introductory remarks to the workshop, James Childress, an emeritus professor of ethics at the University of Virginia, stated that the primary purpose of the workshop was not to debate the ethical pros and cons of physician-assisted death, but to understand the current landscape and identify areas where more data and research would be helpful to fill knowledge gaps. He noted that the workshop speakers and audience members represented a variety of disciplines and experiences and held diverse views about physician-assisted death, ranging from supportive to skeptical to opposed, with many gray areas and nuance in between. “Even though there are understandably divergent viewpoints,” he said, “we have a shared focus on seeking to understand the practice of physician-assisted death in the United States.” The intended focus of the workshop was to better understand physician-assisted death in the United States from an empirical perspective, including drawing upon experiences in the Netherlands and Canada (see Chapter 4 for international experiences).

WORKSHOP FOCUS AND CONTENT

As stated above, the focus of the workshop was what is known and not known empirically about the practice of physician-assisted death. Throughout the development of the workshop agenda the planning committee kept in mind a number of questions derived from the Statement of Task; for instance: What are the current practices and challenges associated with physician-assisted death in U.S. states where it is legal and not legal? Who is accessing physician-assisted death and how are legal safeguards being observed? How is the practice of physician-assisted death impacting the patient and family experience of death? How are clinicians and health care institutions responding to the legalization of physician-

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² A 2009 Montana Supreme Court decision ruled that state law protects Montana physicians from prosecution for helping terminally ill patients die. See Baxter v. Montana, 224 P.3d 1211 (2009). This information was added after the prepublication release.

³ Colorado End-of-Life Options Act, Colorado Revised Statutes. 25-48 (November 8, 2016).

⁴ Death with Dignity Act of 2016, District of Columbia Official Code, Chapter 6B: Physician Assisted Death, § 7-661 (November 2016).

⁵ Our Care, Our Choice Act, H.B. 2739, 29th Legislature, State of Hawaii (April 2018).

assisted death? What are the gaps in empirical data about physician-assisted death and how could the collection of data to fill those gaps also inform ethical arguments surrounding physician-assisted death? The planning committee designed an agenda and invited speakers who could discuss the potential answers to some of these questions based on their expertise or personal experience with physician-assisted death.

Invited speakers were instructed to focus on the evidence and avoid lengthy discussions of the moral or ethical arguments for or against physician-assisted death. However, an unavoidable connection and a tension exist between the empirical study of the practice of physician-assisted death and the moral or ethical issues surrounding the practice. The workshop discussions were not immune to this tension. Therefore, as a factual summary of the presentations and discussions at the workshop, this proceedings contains the dialogue that took place at the workshop which includes aspects of both the empirical study of physician-assisted death and some of the associated moral and ethical considerations regarding the practice.

TERMINOLOGY

This publication summarizes the workshop’s presentations and discussions. To provide context for the workshop, Childress explained that there are broad and narrow interpretations of physician-assisted death in contemporary discourse. The narrow interpretation, he said, is embodied in laws that have legalized physician-assisted death in several U.S. states. In this context, physician-assisted death—also referred to as physician-aided death, physician aid-in-dying, or physician-assisted suicide—refers to a physician providing a patient who requests aid-in-dying a prescription that the patient can self-administer to end his or her life. Physician-assisted death in this narrow sense is distinct from broader interpretations that include physician-administered death, sometimes called active euthanasia, which is not legal anywhere in the United States (see Chapter 4 for information from the Netherlands and Canada where euthanasia and medical aid-in-dying including physician administration of lethal medication, respectively, are more broadly applied).

As described throughout this proceedings, universally agreed-upon terminology does not exist in this area. The rapporteurs have used the term “physician-assisted death” throughout, except when individual speakers used an alternative term, in which case the speaker-preferred term is used. In their presentations some speakers preferred the term “physician-assisted death” or “physician aid-in-dying,” whereas others used “physician-assisted suicide.” In Canada, “medical aid-in-dying” is the preferred terminology, and this encompasses physician-assisted death

as well as euthanasia (e.g., when a physician administers lethal medication at the explicit request of the patient) (Li et al., 2017).

Also as described later in this proceedings, physician-assisted death could encompass a broader interpretation that includes a number of activities such as withholding or withdrawing life-extending treatment, terminal sedation, or not attempting to feed a patient who has lost interest in eating. Again, the focus of the workshop and the term used throughout this proceedings, in the absence of a speaker-preferred term, is physician-assisted death as applied in some U.S. state laws to mean a physician providing a prescription for a lethal dose of medication to a patient in response to his or her request for the patient to self-administer.

ORGANIZATION OF THE PROCEEDINGS

This Proceedings of a Workshop was prepared by the rapporteurs as a factual summary of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of individual workshop participants and should not imply consensus.

The workshop was webcast live, and online participants were able to contribute to the discussions through the hashtag #PhysicianAssisted Death. The slide presentations and videos are archived on the National Academies website.⁶

The proceedings is organized as follows:

• Chapter 2 discusses conceptual, legal, and ethical considerations in physician-assisted death.
• The next two chapters discuss experiences with physician-assisted death in the United States (Chapter 3) and in other countries (Chapter 4).
• Chapter 5 discusses legal safeguards in the practice of physician-assisted death and, in general, how some health care organizations and individual clinicians have responded to legalization.
• Chapter 6 discusses physician-assisted death in the context of other support systems for patients.
• Chapter 7 concludes the proceedings with a discussion of the evidentiary gaps.

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⁶ For more information, see http://nationalacademies.org/hmd/Activities/HealthServices/PADworkshop/2018-FEB-12.aspx (accessed May 19, 2018).

REFERENCES

Emanuel, E. J., B. D. Onwuteaka-Philipsen, J. W. Urwin, and J. Cohen. 2016. Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada, and Europe. JAMA 316(1):79–90.

Li, M., S. Watt, M. Escaf, M. Gardam, A. Heesters, G. O’Leary, and G. Rodin. 2017. Medical assistance in dying—Implementing a hospital-based program in Canada. New England Journal of Medicine 376(21):2082–2088.