Appendix A

Workshop Agenda

Physician-Assisted Death: Scanning the Landscape and Potential Approaches: A Workshop

February 12–13, 2018

National Academy of Sciences Building
2101 Constitution Avenue, NW, Washington, DC

This National Academies of Sciences, Engineering, and Medicine workshop will explore the evidence base and research gaps relating to the implementation of the clinical practice of allowing terminally ill patients to access life-ending medications with the aid of a physician. The workshop is sponsored by The Greenwall Foundation. The workshop will examine what is known, and unknown, about how physician-assisted death is practiced and accessed in the United States; it will not be a focus of the workshop to discuss at length the moral or ethical arguments for or against the practice of physician-assisted death. The workshop will serve as a neutral space to facilitate dialogue in order to help inform ongoing discussions between patients, their providers, and other health care stakeholders.

STATEMENT OF TASK

• What is known empirically about the access to and practice of physician-assisted death in the United States and in other countries?
  • In states where it is legal:
    • What is known about who accesses it and the impact the practice has on the patient and family experience of death?
    • What is known about whether legal safeguards are observed?
    • What is known about whether concerns about vulnerable populations have been realized when it is practiced?
  • In states where it is not legal:
    • What is known about the current practice of physician-assisted death and what patients are accessing it?
    • Is its practice accompanied by safeguards, if any, and how do such safeguards compare with safeguards enacted in states where it is legalized?
  • What are the gaps in empirical data about the practice of physician-assisted death in the United States?
    • How do the data collected in the United States compare with the data collection in countries like the Netherlands, which have more extensive reporting and data collection?
• What are potential approaches for physicians:
  • Who practice in a state where it is legal but are personally opposed to physician-assisted death.
  • Who receive a request for access but the situation does not adhere to the applicable state’s legal framework.
  • Who receive a request for access when the practice is legal in nearby states but not in the state of practice.
• What is known about how palliative care and hospice services have incorporated the practice of physician-assisted death in states where it is legal?

DAY 1: February 12
Lecture Room

Welcome and Introductory Remarks
Jim Childress, University of Virginia (Workshop Chair)

Session Objectives:

• Discuss an overview of the evidentiary landscape.
  • What is known about current practice? What are the limitations of current evidence about practices?
  • Is the evidence base adequate to inform ethical debates about the practice? Which ethical arguments about physician-assisted death could be examined and informed by scientific evidence, and which cannot?
• Discuss an overview of the regulatory landscape: Where is this legal, what is legal, and what may be on the horizon?
• Highlight terminology, including gaps or ambiguity in key definitions.

Session Chair: Linda Ganzini

Session Objectives:

• Outline current provider practices when a request is made. Discuss the experiences and approaches of health care providers across different jurisdictions.
• Outline the statutory safeguard requirements and implications of them—how they are implemented and experienced. Discuss potential approaches for different case scenarios: cases that do not fit the applicable legal definitions; cases in jurisdictions where the practice is not legal; and cases in jurisdictions where the practice is legal but has been refused by a provider.

Session Co-Chairs: David Magnus and Neil Wenger

DAY 2: February 13
Lecture Room

Recap Day One and Discussion with Workshop Participants
Jim Childress, University of Virginia (Workshop Chair)

Session Objectives:

• Discuss what is known about how palliative care and hospice have incorporated the practice of physician-assisted death in states where it is legal.
• Discuss perspectives and practices of long-term care provider systems.

Session Co-Chairs: James Tulsky, Richard Payne, and Joanne Lynn

Session Objective:

• Consider what we can learn from other countries, focusing on how data collected in the United States compare with the data collection in other countries with legal aid-in-dying frameworks.

Session Chair: Nancy Berlinger, The Hastings Center

Session Objectives:

• Reflect on key takeaways from the panel presentations and discussions.
• Highlight evidentiary gaps that, if filled, would help inform potential approaches for health care providers, and discuss potential approaches to address identified evidentiary gaps.
• Explore what is next in the conversation—including potential related issues that remain undeveloped but linger on the horizon.

Session Chair: Jim Childress

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