March 2001

Grant Results

SUMMARY

In 1997 and 1998, staff at Dartmouth College, Hanover, N.H., organized two conferences on physician-assisted suicide and what it means to persons with disabilities, along with two training sessions that focused on developing ways of educating people with disabilities on the subject.

Key Results

  • The first conference — entitled "End of Life Decision Making for People with Disabilities: The Problem of Physician-Assisted Suicide and Active Voluntary Euthanasia" — was held in Chicago, Ill, on June 27–28, 1997.

    Eighteen national leaders from law, medicine, ethics, social policy, and disability research and advocacy attended. Participants identified critical issues regarding people with disabilities and physician-assisted suicide, including:
    • The failure to include persons with disabilities in discussions about physician-assisted suicide taking place in policy making forums and media events.
    • The withdrawal-of-treatment option is presented to families of individuals with disabilities.
    • The unavailability of broad community and home-based support services for people with disabilities.
    • The lack of medical education surrounding palliative care efforts and persons with disabilities.
    • The complex issues surrounding surrogate decision-making for individuals with cognitive disabilities.
  • The second conference, held on March 2, 1998 in Manchester, N.H., brought together some 260 people with disabilities (along with some of their family members), legislators, attorneys, physicians, and professionals working in the field of disability services.
    • Two sponsors of proposed legislation for physician-assisted suicide presented proponents' perspectives, and other speakers addressed the concerns of people with disabilities.
  • A training on disability and legalized assisted suicide was piloted in two one and a half-hour sessions in Chicago, Ill, in the spring of 1998. Twelve people with various disabilities attended the first session; seventeen people with multiple sclerosis attended the second.

Funding
The Robert Wood Johnson Foundation (RWJF) supported the conferences and seminar with a grant of $30,917 that took place between March 1997 and March 1998.

 See Grant Detail & Contact Information
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THE PROBLEM

According to the project director, people with disabilities are likely to suffer unduly and disproportionately from a social policy of legalized physician-assisted suicide and active voluntary euthanasia.

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THE PROJECT

Staff at Dartmouth College, Hanover, N.H. organized two conferences on physician-assisted suicide and what it means to persons with disabilities, along with two training sessions that focused on developing ways of educating people with disabilities on the subject.

One concern that arose among participants from the first conference centered on the feeling that most people, including people with disabilities, are not aware that widely proposed models for physician-assisted suicide include people with non-terminal disabilities as eligible candidates for hastened death.

With money left over from the initial project, the project director conducted two activities designed to focus on this issue:

  • A second conference, entitled "Physician-Assisted Suicide — What It Means to People with Disabilities."
  • A pilot training program for people with disabilities on disability and legalized assisted suicide.

Six other organizations contributed a total of approximately $10,000 to the funding of the second conference:

  • New Hampshire Developmental Disabilities Council.
  • Disabilities Rights Center.
  • Granite State Independent Living Foundation.
  • Institute on Disability/University Affiliated Program - University of New Hampshire.
  • New England ADA Technical Assistance Center.
  • University Affiliated Program at Dartmouth Medical School.

Communications

Project staff produced a report on the project and distributed it through the Institute on Disability/UAP at the University of New Hampshire.

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RESULTS

  • The first conference — entitled "End of Life Decision Making for People with Disabilities: The Problem of Physician-Assisted Suicide and Active Voluntary Euthanasia" — was held in Chicago, Ill, on June 27–28, 1997.

    Eighteen national leaders from law, medicine, ethics, social policy, and disability research and advocacy attended. Participants identified critical issues regarding people with disabilities and physician-assisted suicide, including:
    • The failure to include persons with disabilities in discussions about physician-assisted suicide taking place in policy making forums and media events.
    • The withdrawal-of-treatment option is presented to families of individuals with disabilities.
    • The unavailability of broad community and home-based support services for people with disabilities.
    • The lack of medical education surrounding palliative care efforts and persons with disabilities.
    • The complex issues surrounding surrogate decision-making for individuals with cognitive disabilities.
    Participants also reported on current efforts to mobilize political advocacy around the issue of physician-assisted suicide and developed strategies to ensure that the concerns of people with disabilities would not be excluded. Strategies were organized into five topics:
    • Strengthening coalitions.
    • Public education.
    • State legislative efforts.
    • Education of the medical profession.
    • Research.
  • The second conference, held on March 2, 1998 in Manchester, N.H., was cosponsored by the New Hampshire Governor's Commission on Developmental Disabilities and planned by a conference planning committee (see the Appendix for a complete list of committee members and affiliation).

    It brought together some 260 people with disabilities (along with some of their family members), legislators, attorneys, physicians, and professionals working in the field of disability services.

    Two sponsors of proposed legislation for physician-assisted suicide presented proponents' perspectives, and other speakers addressed the concerns of people with disabilities.
  • The training on disability and legalized assisted suicide was piloted in two one and a half-hour sessions in Chicago, Ill, in the spring of 1998. Twelve people with various disabilities attended the first session; seventeen people with multiple sclerosis attended the second.

    Before the start of the sessions, participants completed questionnaires concerning their beliefs and attitudes toward legalized assisted suicide, and then listened to a panel presentation, including two speakers endorsing legislation for assisted suicide and two opposing it.

    Following the presentation, participants completed the same questionnaire. Comparisons of the two sets of questionnaires suggested that a balanced educational presentation on disability and legalized assisted suicide had a limited effect on the knowledge and attitudes of either group of participants.

    In general, those who came to the presentation with strong views on the subject changed very little compared to those initially expressing neutrality. Among attendees, it appeared that women with disabilities were more likely to be opposed to legalized assisted suicide than men, and persons of color were more likely to be opposed than white persons. African-American and Latina women with disabilities expressed the most opposition to legalized assisted suicide.

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GRANT DETAILS & CONTACT INFORMATION

Project

Conference on End-of-Life Decision Making for People with Chronic Disabling Conditions

Grantee

Dartmouth College (Hanover,  NH)

  • Amount: $ 30,917
    Dates: March 1997 to March 1998
    ID#:  031118

Contact

John B. Moeschler, M.D.
(603) 650-7884
John.Moeschler@hitchcock.org

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APPENDICES


Appendix 1

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Conference Planning Committee - New Hampshire Physician-Assisted Suicide Conference

William Finn
Commission Member
Governor's Commission on Disability
Concord, N.H.

Michael D. Jenkins
Executive Director
Governor's Commission on Disability
Concord, N.H.

John B. Moeschler, M.D.
Dartmouth-Hitchcock Medical Center
Lebanon, N.H.

Jane A. Nisbet, Ph.D.
Institute on Disability
University of New Hampshire
Durham, N.H.

James P. Pilliod, M.D.
New Hampshire Medical Society
Laconia, N.H.

Al Robichaud
Executive Director
Developmental Disabilities Council
Concord, N.H.

Larry Robinson
Executive Director
Granite State Independent Living Foundation
Concord, N.H.

Mitch Simon
Franklin Pierce Law Center
Concord, N.H.

Donna Woodfin
Executive Director
Disabilities Rights Center
Concord, N.H.

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Books and Reports

Moeschler JB. End of Life Decision Making by People with Disabilities: The Problem of Physician-Assisted Suicide and Active Voluntary Euthanasia. From unpublished manuscript distributed by the Institute on Disability/UAP at the University of New Hampshire, Durham, N.H.

Sponsored Conferences

"End of Life Decision Making for People with Disabilities: The Problem of Physician-Assisted Suicide and Active Voluntary Euthanasia," June 27–28, 1997, Chicago, Ill. Eighteen national leaders from law, medicine, ethics, social policy, and disability research and advocacy attended.

"Physician-Assisted Suicide — What It Means to Persons with Disabilities," March 2, 1998, Manchester, N.H. Attended by 260 people, including people with disabilities (along with family members), legislators, attorneys, physicians, and professionals working in the field of disability services.

Presentations

  • O. Alan Thulander, New Hampshire House of Representatives (Concord, N.H.) and Robert H. Guest, New Hampshire House of Representatives (Concord, N.H.), "Physician-Assisted Suicide: A Proponent's Perspective."
  • M. Cathleen Kaveny, Notre Dame Law School (Notre Dame, Ind.), "Managed Care, Ethics and Physician-Assisted Suicide."
  • Diane Coleman and Stephen Drake, author and advocate for persons with disabilities (Chicago Ill.), "The Disability Community and Physician-Assisted Suicide."
  • Wesley Smith, Author and public speaker (Chicago, Ill.)

Panel

  • Mitchell Simon (moderator), Franklin Pierce Law Center (Concord, N.H.); Thomas Cagle, N.H. Affiliate of Not Dead Yet (Concord, N.H.); Donald Emmons, Plymouth State College (Plymouth, N.H.); Marie Kirn, Hospice VNH; John B. Moeschler, Dartmouth College (Hanover, N.H.); and James P. Pilliod, New Hampshire Medical Society (Durham, N.H.),"The New Hampshire Situation (Managed Care, Palliative Care, Supports for Persons with Disabilities, Etc.)"

Sponsored Workshops

"Training on Disability and Legalized Assisted Suicide," December 1, 1997, Chicago, Ill. Attended by 12 people with general disabilities.

"Training on Disability and Legalized Assisted Suicide," December 5, 1997, Chicago, Ill. Attended by 17 people with multiple sclerosis.

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Report prepared by: Robert Crum
Reviewed by: David Kales
Reviewed by: Janet Heroux
Program Officer: Rosemary Gibson

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