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Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Appendixes

Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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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.

 

Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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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

Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

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

Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

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.

Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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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

Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×

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

Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 313
Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 314
Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 315
Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 316
Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 317
Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 318
Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 319
Suggested Citation:"Appendix A." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 320
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When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening.

Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care.

This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life:

  • Determining diagnosis and prognosis and communicating these to patient and family.
  • Establishing clinical and personal goals.
  • Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."
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