Appendixes



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--> 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 1   The 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.  

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--> 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

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--> 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   Circumstances of Death   Kathleen Foley, M.D., Memorial Sloan-Kettering Cancer Center Vincent Mor, M.D. (paper only), Brown University   Prognosis   Murray Pollack, M.D., Children's National Medical Center George Thibault, M.D., Brockton-West Roxbury V.A. Medical Center   Practitioner Attitudes and Behavior   Christine Cassel, M.D., University of Chicago Medical Center   Discussion 2:45 UNDERSTANDING THE LEGAL AND SOCIAL CONTEXT   Legal Considerations   Robert Burt, J.D., Yale University James Strain, M.D., Denver, Colorado   Cultural Perspectives   Barbara Koenig, Ph.D., Stanford University Center for Biomedical Ethics Kathryn Hunter, Ph.D., Northwestern University   Discussion 4:15 IMPROVING DECISIONMAKING   Educating Physicians   Neil MacDonald, M.D., University of Alberta   Informing Patients and Families   Edwin Cassem, M.D., Massachusetts General Hospital   Developing Practice Guidelines   Lawrence Schneiderman, M.D., University of California at San Diego   Discussion

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--> 6:00 Presentation on SUPPORT Program   Joan Teno, M.D., and Joanne Lynn, M.D., Dartmouth-Hitchcock Medical Center December 3 8:00 ROUNDTABLE DISCUSSION OF PRIORITIES   Productive topics and strategies Research agenda 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 DecisionMaking 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.

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--> 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

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--> 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