A
Institute of Medicine
Feasibility Study on Care at the
End of Life1
August 1993—February 1994
IOM STUDY COMMITTEE
Christine K. Cassel, M.D.,* Chair, Professor of Medicine and Professor of Public Policy Studies, The University of Chicago Medical Center, Chicago, Illinois
Henry J. Aaron, Ph.D.,* Senior Fellow, The Brookings Institution, Washington, D.C.
Robert A. Burt, J.D.,* Alexander M. Bickel Professor of Law, Yale Law School, New Haven, Connecticut
Kathleen M. Foley, M.D.,* The Society of Memorial Sloan-Kettering Cancer Center Chair, Memorial Sloan-Kettering Cancer Center, New York, New York
Robert M. Kliegman, M.D., Professor and Chair of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin
Joanne Lynn,* M.D., Professor of Community and Family Medicine, Dartmouth Medical School, Hanover, New Hampshire
Lawrence Schneiderman, M.D., Professor of Medicine, University of California at San Diego, San Diego, California
George E. Thibault, M.D., Chief of Medicine, Brockton-West
Roxbury V.A. Medical Center, W. Roxbury, Massachusetts
STUDY STAFF
DIVISION OF HEALTH CARE SERVICES
Marilyn J. Field, Ph.D., Study Director
Kathleen N. Lohr, Ph.D., Division Director, Health Care Services
Richard D. Rettig, Ph.D., Senior Program Officer
Donna D. Thompson, Project Assistant
WORKSHOP
DYING, DECISIONMAKING, AND APPROPRIATE CARE
National Academy of Sciences • Washington, D.C.
December 2—3, 1993
AGENDA
December 2
1:00 WELCOME, INTRODUCTIONS, AND REVIEW OF WORKSHOP GOALS
1:15 IMPROVING OUR KNOWLEDGE BASE
2:45 UNDERSTANDING THE LEGAL AND SOCIAL CONTEXT
4:15 IMPROVING DECISIONMAKING
6:00 Presentation on SUPPORT Program
December 3
8:00 ROUNDTABLE DISCUSSION OF PRIORITIES
10:30 ADJOURN WORKSHOP
COMMISSIONED AND COMMITTEE BACKGROUND PAPERS
1. Apparent Impact of Laws Affecting Dying, Decisionmaking
and Appropriate Care
Robert A. Burt, J.D.
2. Attitudes of Physicians Toward Caring for the Dying Patient
Christine Cassel, M.D.
3. Difficult Deliberations about Care at the End of Life
Edwin Cassem, M.D.
4. Epidemiology of Death: The How, Why, Where and Symptoms of Dying
Kathleen M. Foley, M.D.
5. Narratives of Dying
Kathryn Montgomery Hunter, Ph.D.
6. Bioethical Perspectives for Pediatric Patients
Robert M. Kliegman, M.D.
7. Cultural Diversity in Decision-Making about Care at the End of Life
Barbara A. Koenig, Ph.D. (See Appendix E of this report)
8. Educational Strategies for Improving Physician Care of Dying Patients
Neil MacDonald, M.D.
9. Available Data for Studying Dying in America
Vincent Mor, Ph.D.
10. Pediatric End-of-Life Decision Making and the Role for Objective Risk Assessment
Murray M. Pollack, M.D., Kantilal M. Patel, Ph.D., and Urs E. Ruttimann, Ph.D.
11. Should the Institute of Medicine Develop Guidelines for Medical Treatment Decisions in Critically Ill and Dying Patients?
Lawrence J. Schneiderman, M.D.
12. The Treatment of Seriously Disabled Newborns
James E. Strain, M.D.
13. The Use of Clinical Models for "End of Life" Decision-Making in Critically Ill ICU Patients
George E. Thibault, M.D. (See Appendix D of this report)
WORKSHOP PARTICIPANTS
Henry J. Aaron, Ph.D.
Senior Fellow
The Brookings Institution
Washington, DC
Linda Blank
Vice President
American Board of Internal Medicine
Philadelphia, PA
Robert A. Burt, J.D.
Alexander M. Bickel Professor of Law
Yale Law School
New Haven, CT
Christine K. Cassel, M.D.
Professor of Medicine
Professor of Public Policy Studies
The University of Chicago Medical Center
Chicago, IL
Edwin H. Cassem, M.D.
Psychiatrist
Massachusetts General Hospital
Boston, MA
Nathan I. Cherny, M.B.B.S.
Pain Fellow
Pain Services, Department of Neurology
Memorial Sloan-Kettering Cancer Center
New York, NY
Marilyn J. Field, Ph.D.
Senior Program Officer
Institute of Medicine
Washington, DC
Kathleen M. Foley, M.D.
Chief, Pain Services
Department of Neurology
Memorial Sloan-Kettering Cancer Center
New York, NY
Carlos Gomez, M.D.
Resident
University of Virginia
Charlottesville, VA
Patrick Hill
Director of Education
Choice in Dying, Inc.
New York, NY
Kathryn Hunter, Ph.D.
Professor of Medicine
Northwestern University
Chicago, IL
Mo Katz
Senior Program Advisor
The Commonwealth Fund
New York, NY
Robert M. Kliegman, M.D.
Professor and Chair of Pediatrics
Medical College of Wisconsin
Milwaukee, WI
Barbara Koenig, Ph.D.
Executive Director
Stanford University Center for Biomedical Ethics
Palo Alto, CA
Kathleen Lohr, Ph.D.
Director, Division of Health Care Services
Institute of Medicine
Washington, DC
Joanne Lynn, M.D.
Professor of Community and Family Medicine
Dartmouth Medical School
Hanover, NH
Neil MacDonald, M.D.
Alberta Council Forum Professor of Palliative Medicine
University of Alberta
Edmonton, CANADA
Murray Pollack, M.D.
Associate Director, Pediatric ICU
Children's National Medical Center
Washington, DC
Richard Rettig, Ph.D.
Senior Program Officer
Institute of Medicine
Washington, DC
Lawrence Schneiderman, M.D.
Professor of Medicine
University of California at San Diego
La Jolla, CA
Anne A. Scitovsky, M.A.
Senior Staff Scientist, Health Economics Department
Palo Alto Medical Foundation
Palo Alto, CA
James E. Strain, M.D.
Denver, CO
William Stubing
President
The Greenwall Foundation
New York, NY
Joan Teno, M.D.
Assistant Professor, Department of Community and
Family Medicine
Dartmouth-Hitchcock Medical Center
Hanover, NH
George E. Thibault, M.D.
Chief of Medicine
Brockton-West Roxbury V.A. Medical Center
W. Roxbury, MA
Donna D. Thompson
Administrative Assistant
Institute of Medicine
Washington, DC
1The conclusions of this study were reported in Summary of Committee Views and Workshop Examining the Feasibility of an Institute of Medicine Study of Dying, Decisionmaking, and Appropriate Care (Washington, D.C.: Division of Health Care Services, February, 1994). Support for this planning study was provided by The Commonwealth Fund.
*Member, Institute of Medicine.