Project Summary
End of Life Care after a Decade of Reform: What Has Been Accomplished? Where Should We Go from Here?
December 1, 2004 - February 28, 2007
Lead Investigator: Thomas H. Murray, Bruce Jennings, Daniel Callahan, Gregory Kaebnick
Funder: Robert Wood Johnson Foundation
Purpose
Explore the conceptual and systemic flaws in end of life care reform since the mid-1970s and develop new, alternative suggestions for reform
Congressional Luncheon Briefing on End-of-Life Care, the Rayburn House Office Building. November 10, 2005.
“Ethical Dilemmas in Public Policy: Lessons From End-of-Life Care,” a program by T.H. Murray, A. Meisel, and J. Lynn held at the Eagleton Institutes of Politics’ Center for American Women and Politics’ New England Forum for Women State Legislators, November 17-19, 2005.
Selected Bibliography on End of Life Decisionmaking
Key Issues
The framework of principles built by the courts, legislatures, and in the professional and ethical literature over the last quarter century has not been embraced – indeed has been rejected – by increasingly powerful and vocal groups.
Lessons and Findings
The current legal consensus on end of life decisionmaking is based on several profound misconceptions and oversimplifications.
Our systems for decision-making and care delivery near the end of life need to be redesigned.
Our assumptions about litigation – that it provides a resolution to individual and social problems, that this resolution is final and uncontestable, and that there are no other last-resort mechanisms for resolution – are largely unsustainable (A. Meisel, “The Role of Litigation in End of Life Care: A Reappraisal,” in Improving End of Life Care: Why Has It Been So Difficult?).
Promising new models have evolved from practice and research that move us closer to achieving the original intent of advance directives (S.E. Hickman et al., “Hope for the Future: Achieving the Original Intent of Advance Directives,” in Improving End of Life Care: Why Has It Been So Difficult?).
It may be possible to build care arrangements around a few basic, common patterns of decline and dying (J. Lynn, “Living Long in Fragile Health: The New Demographics Shape the End of Life,” in Improving End of Life Care: Why Has It Been So Difficult?).
We should re-evaluate advance directives and surrogate decision-making (T.H. Murray and B. Jennings, “The Quest to Reform End of Life Care: Rethinking Assumptions and Setting New Directions,” in Improving End of Life Care: Why Has It Been So Difficult?):
- Advance directives should be more adequately and routinely factored into information and decision-making systems that physicians are comfortable with.
- The appropriate role of family members in such case should be more easily accommodated
- Surrogates named in advance directives and other family members should be given adequate information, counseling, and support.
When conflicts and disagreements arise within families, independent mediation and conflict resolution services, including pastoral counseling, should be readily available in health care institutions (N.N. Dubler, “Conflict and Consensus at the End of Life,” and T.H. Murray and B. Jennings, “The Quest to Reform End of Life Care: Rethinking Assumptions and Setting New Directions,” in Improving End of Life Care: Why Has It Been So Difficult?
Project Participants
Adrienne Asch, Yeshiva University School of Social Work
Robert A. Burt, Yale University School of Law
Daniel Callahan, The Hastings Center
Nancy Neveloff Dubler, Montefiore Medical Center and Albert Einstein College of Medicine
Kathleen M. Foley, Memorial Sloan-Kettering Cancer Center
Bernard J. Hammes, Gundersen Lutheran Medical Foundation and Medical Center
Susan E. Hickman, School of Nursing and School of Medicine at Oregon Health & Science University
Sandra H. Johnson, School of Law and Center for Health Care Ethics at Saint Louis University
Joanne Lynn, RAND Corporation
Alan Meisel, Center for Bioethics and Health Law at the University of Pittsburgh
Alvin H. Moss, Center for Health Ethics and Law at West Virginia University
Susan W. Tolle, Center for Ethics in Health Care at Oregon Health & Science University
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Last Updated: 22 March 2007