Approaching Death

Committee on Care at the End of Life

Marilyn J. Field and Christine K. Cassel, Editors

Division of Health Care Services

INSTITUTE OF MEDICINE

Notice

Committee on Care at the End of Life

NATIONAL ACADEMY PRESS
Washington, D.C. 1997

National Academy Press • 2101 Constitution Avenue, N.W. • Washington, D.C. 20418

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.

This report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine.

The Institute of Medicine was chartered in 1970 by the National Academy of Sciences to enlist distinguished members of the appropriate professions in the examination of policy matters pertaining to the health of the public. In this, the Institute acts under both the Academy's 1863 congressional charter responsibility to be an adviser to the federal government and its own initiative in identifying issues of medical care, research, and education. Dr. Kenneth I. Shine is president of the Institute of Medicine.

Support for this project was provided by the Project on Death in America of the Open Society Institute, the Greenwall Foundation, the Health Care Financing Administration, the Culpeper Foundation, and the Robert Wood Johnson Foundation. Additional support was provided by the Commonwealth Fund, the Archstone Foundation, and the Irvine Health Foundation. The views presented are those of the Institute of Medicine Committee on Care at the End of Life and are not necessarily those of the funding organizations.

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Library of Congress Cataloging-in-Publication Data

Approaching death : improving care at the end of life / Committee on
Care at the End of Life, Division of Health Care Services, Institute
of Medicine ; Marilyn J. Field and Christine K. Cassel, editors.
p. cm.
Includes bibliographical references (p. ) and index.
ISBN 0-309-06372-8 (cloth)
1. Terminal care—United States. I. Field, Marilyn J. (Marilyn
Jane) II. Cassel, Christine K. III. Institute of Medicine (U.S.).
Committee on Care at the End of Life.
R726.8.A68 1997
362.1'7'0973—dc21 97-21175

Printed in the United States of America

The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The image adopted as a logotype by the Institute of Medicine is based on a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

Front cover: Original photograph by Charlotte Hebeler; design and photo manipulation by Francesca Moghari.

COMMITTEE ON CARE AT THE END OF LIFE

CHRISTINE CASSEL, M.D.,* Chair, Chair, Department of Geriatrics and Adult Development, Mt. Sinai Medical Center, New York

ROBERT BURT, J.D.,* Professor of Law, Yale Law School, New Haven, Connecticut

MARGARET CAMPBELL, M.S.N., Clinical Nurse Specialist/Nurse Practitioner, Detroit Receiving Hospital and University Health Center, Detroit

ROBERT KLIEGMAN, M.D., Chair, Pediatrics, Medical College of Wisconsin, Milwaukee

MATTHEW LOSCALZO, M.S.W., Research Associate, The Johns Hopkins University School of Medicine, Director, Oncology Social Work, The Johns Hopkins Oncology Center, Baltimore, Maryland

JOANNE LYNN, M.D.,* Director, Center to Improve Care of Dying, George Washington University, Washington, D.C.

NEIL MACDONALD, M.D., Director, Cancer Bioethics Program, Institut de Recherches Cliniques de Montreal, Professor of Oncology, McGill University, Montreal

WILLARD MANNING, Ph.D.,* Professor of Health Services Research and Policy, University of Minnesota, Minneapolis

DONALD PATRICK, Ph.D.* Professor, Department of Health Services, University of Washington, Seattle

RICHARD PAYNE, M.D., Chief, Pain and Symptom Management Section, Professor of Medicine (Neurology), Department of Neuro-Oncology, M.D. Anderson Cancer Center, The University of Texas, Houston

GEORGE THIBAULT, M.D., Chief Medical Officer, Brigham and Women's Hospital, Boston, Massachusetts

THERESA VARNER, M.S.W., M.A., Director of Public Policy, American Association of Retired Persons, Washington, D.C.

Study Staff

MARILYN J. FIELD, Ph.D., Study Director and Deputy Director, Health Care Services

GARY PENN, J.D., Research Associate

KARLA R. SAUNDERS, Administrative Assistant

KATHLEEN N. LOHR, Ph.D., Division Director (through January 1996)

CLYDE J. BEHNEY, Deputy Executive Officer

MONA BRINEGAR, Financial Associate

* Member, Institute of Medicine.

Preface

After years of inattention, American society and American medicine are reexamining how we approach dying and death and how we care for people at the end of their lives. It may seem rather ironic that now, close to the year 2000, we are contemplating a reality as universal and certain as human mortality. Further, this is not the first time in this century that we have tried to rethink attitudes and practices as they relate to care at the end of life. In past years, critics and reformers have argued that medical technology has obscured humanistic compassion for dying people and those close to them. These voices have urged more humility about the reach of medicine and more compassion, empathy, and caring for people approaching death. Even though many important innovations, such as hospice programs and palliative medicine, have improved the care potentially available to dying patients, changes in attitudes and practices have been more limited than urged by reformers. Medical technology, meanwhile, has continued to advance, and the temptation remains great to ignore its limits and to evade the uncomfortable and emotionally challenging demands of facing these limits.

Dying, however, is part of life. This report argues that we can do much more to relieve suffering, respect personal dignity, and provide opportunities for people to find meaning in life's conclusion. We are heartened by the small but growing number of activities that are aimed at reaching these goals. Medical societies, health professions schools and certification organizations, charitable foundations, health systems, researchers, patient and community groups, and policymakers are all involved. When this Institute of Medicine (IOM) study was first contemplated more than four years ago, very little of this work had been initiated.

This study itself arose in response to a request that the IOM conduct a project to develop guidelines for identifying and limiting futile treatments. After extensive consultations revealed many concerns that such a focus would not prove successful, the IOM undertook a six-month study of the feasibility and probable contribution of an IOM study on care at the end of life (Appendix A). Following two meetings and a workshop for which several background papers were prepared, the planning committee appointed to consider the question strongly endorsed a full-scale study that would both generally examine issues related to dying, decisionmaking, and appropriate care and selectively focus on several narrower topics. The group concluded that although much is being done to improve the care of critically ill and dying patients, many questions remain to be persuasively answered—or, for that matter, asked—about what constitutes appropriate care for different kinds of patients and how choices about care for dying patients can best be made and implemented.

In response, the IOM embarked on an extended effort to raise funds for a broad study that would make recommendations for improving care at the end of life. In late 1995, sufficient funding had been secured to permit the study to begin. To undertake the study, the IOM appointed a 12-member committee of experts in medical and nursing care for chronically and severely ill patients, ethics, quality of care, health policy, health services research, law, economics, social services, and related fields. The committee's broad tasks were to

• assess the state of knowledge about the clinical, behavioral, legal, economic, and other important aspects of care for patients with life-threatening medical problems;

• evaluate methods for measuring outcomes, predicting survival and functional status, determining patient and family preferences, and assessing quality of care;

• identify factors that impede or promote high-quality care for patients approaching death; and

• propose steps that policymakers, practitioners, and others could take to improve the organization, delivery, financing, assessment, and quality of care for those with terminal illnesses and to increase agreement on what constitutes appropriate care.

Between January 1996 and January 1997 the committee met five times. It also conducted two public meetings, one in Washington, D.C., and another in Irvine, California. Of the nearly 100 groups contacted, thirty-six groups presented statements at these meetings (see the meeting agendas in Appendix B), and another 11 groups submitted written statements. The committee also met with researchers from the National Institutes of Health and other organizations. In addition to learning from the papers commissioned for the planning study, committee and staff reviewed literature (often quite sparse) on the issues identified in its charge. In addition, committee members participated in a workshop organized by the George Washington University Center to Improve Care of the Dying that began a process of developing a "toolkit" of quality and outcomes measures for end-of-life care. The committee also commissioned supplemental work for discussions of the epidemiology of dying and the cost of care at the end of life. This report, thus, reflects a wide-ranging effort to understand what we know about care at the end of life and what we have yet to learn.

The importance of this topic is undeniable. Unlike research about individual diseases, research about dying has the potential to touch every family and every individual in some way. Even those who die suddenly and unexpectedly can expect their survivors to benefit from a better understanding of grief and bereavement. The work of this committee and a growing number of others thus can bring great benefit. That biomedical science is making enormous strides also creates reasons for optimism about opportunities to better understand the pathophysiology of physical and emotional symptoms and to develop new approaches to preventing and ameliorating these symptoms. Increasing understanding of genetics, human biology, and longevity should not lead to dreams of near immortality but, rather, give us greater respect for the cycle of human life.

Medicine and public health should continue to help people live long, healthy lives. When medicine can no longer promise an extension of life, people should not fear that their dying will be marked by neglect, care inconsistent with their wishes, or preventable pain and other distress. They should be able to expect the health care system to assure reliable, effective, and humane caregiving. If we can fulfill that expectation, then public trust will be strengthened. The memorable words of Sir William Osler that we must "care always" will be renewed as a fundamental and abiding value.

Christine K. Cassel, M.D.
Chair

Acknowledgments

Many individuals and groups assisted the study committee and staff in the development of this report. At the start, those who served on the feasibility study committee shaped the direction of the report in major ways, and the authors of several papers commissioned for that activity provided important insights and information. The members of that committee and the paper authors are listed in Appendix A (see also IOM, 1994). Two of the background papers are included in Appendices D and E.

Additional information and insights came from two public meetings, during which the committee heard from many organizations and individuals deeply involved with care of people with advanced progressive illnesses. Many participants made contributions beyond the public meetings to help us understand the difficult issues in end-of-life care. Appendix B includes the meeting agendas and participant lists and also cites the organizations that provided written testimony.

In addition, a workshop coordinated with Joan Teno, M.D. (then of the George Washington University's Center to Improve Care of the Dying, now at Brown University) was tremendously useful in understanding the array of potentially useful tools and instruments for measuring the quality of life and the quality of care for those approaching death. Information about the workshop is included in Appendix F.

Two very informative meetings were held with the following staff from the National Institutes of Health: Patricia Bryant, Ph.D., and Mitchell Max, M.D., of the National Institute of Dental Research; Bill Foster, M.D., Senior Staff Physician at NIH; Jack Killen, M.D., of the Division of AIDS in the National Institute of Allergy and Infectious Disease; June Lunney, Ph.D., R.N., of the National Institute of Nursing Research; Mary Schwarz McCabe, B.A., B.S.N., and Claudette Varricchio, D.S.N., of the National Cancer Institute; Emanuel Stadlan, M.D., of the National Institute on Neurological Disorders and Stroke; and Alan Trachtenberg, M.D., of the National Institute on Drug Abuse. In addition to these meetings, Drs. Max and Killen provided very helpful ideas about important biomedical research issues. Other valuable assistance in understanding research questions and priorities was provided by Kathryn Foley, M.D. and William Breitbart, M.D., of Memorial Sloan-Kettering Cancer Center, and Gary Bennett, Ph.D., of Allegheny University of the Health Sciences.

The staff of the George Washington University's Center to Improve Care for the Dying provided much assistance, including work in developing Appendix C. Anne Wilkinson, Ph.D., Elise Ayers, Ann Bolin, and Kristen Landrum made particular contributions. At Mt. Sinai Medical Center, the patience and cooperation of Helen Blakes and Sylvia Giamarino is very much appreciated.

Susan Tolle, M.D., Director of the Center for Ethics in Health Care at the Oregon Health Sciences University, and Betty Ward provided an opportunity to meet with many people participating in a series of Oregon initiatives to improve care at the end of life. A day-long conference involving clinicians and managers in long-term care offered insights into the challenges and opportunities to improve care in these settings. Among others sharing their experience and knowledge were Marian Hodges, M.D., of Sisters of Providence Hospitals; Paul Bascom, M.D., chair of OHSU University Hospitals' comfort care team, and several other team members: Michael Garland, D.Sc.Rel., Miles Edwards, M.D., and Ralph Crawshaw, M.D.

At the University of Virginia, Carlos Gomez, M.D., arranged a similarly useful visit that included opportunities to meet with community hospice, hospital, medical school, and other people involved in developing an inpatient hospice unit and in expanding the education of students and residents in end-of-life care. Among the many who were helpful to us were Victoria Todd, M.B.A., and Mary Jane Griffith, R.N., of the Hospice of the Piedmont; Elizabeth McGovern and John Herrmann from the Center for Hospice and Palliative Care; Carolyn Englehard, M.A.P.A., of the Virginia Health Policy Center; James Childress, Ph.D., and Marcia Finney, Ph.D.; and members of the Division of General Medicine including Drs. Daniel Becker, Munsey Wheby, Robert Carey, Margaret Reitmeyer, and Scott Robertson.

Linda Blank, Vice President, American Board of Internal Medicine, was helpful in innumerable ways based on her experience with the Board's work to improve residency education. David Joranson, M.S.S.W., and Aaron Gilson, M.S., M.S.S.W., of the Pain and Policy Studies Group at the University of Wisconsin's Comprehensive Cancer Center, offered much guidance in understanding the legislative and policy barriers to good pain treatment. Chris Cody and John Mahoney of the National Hospice Organization responded time and again to requests for demographic and policy clarification. The committee also wishes to thank Knight Steel, M.D., Hackensack University; Susan Bloch, M.D., and J. Andrew Billings, M.D., Harvard University; Tom W. Smith, Ph.D., of the National Opinion Research Council; Ira Byock, M.D., Academy of Hospice and Palliative Care Physicians; Kathleen Lohr, Ph.D., Research Triangle Institute; Diane Meier, M.D., Mt. Sinai Medical Center (NYC); Daniel Sulmasy, M.D., Georgetown University; and James Lubitz, Ph.D., and Gerald Riley, Ph.D., of the Health Care Financing Administration.

The study's sponsors and project officers provided information and assistance on several occasions. We particularly thank William Stubing of the Greenwall Foundation, Mary Calloway of the Open Society Institute, Rosemarie Hakim of the Health Care Financing Administration, Linda Jacobs and Mary Ellen Bucci of the Culpeper Foundation, and Rosemary Gibson of the Robert Wood Johnson Foundation.

As usual, a number of people within the Institute of Medicine provided assistance to the study committee and study staff in many different ways. We would especially like to thank Molla Donaldson, Claudia Carl, Francesca Moghari, Sally Stanfield, Constance Pechura, Ph.D., Mike Edington, Mary Lee Schneiders, Luis Nuñez, and Dan Quinn.

Contents

SUMMARY

1 INTRODUCTION

The Need for Consensus and Action
Initiatives to Improve Care at the End of Life
Overview of Report
Guiding Principles
Concepts and Definitions
Conclusion

2 A PROFILE OF DEATH AND DYING IN AMERICA

When People Die: The Aging of America
Why People Die: Causes of Death
Where People Die: Death in Institutions and Residences
How People Die: Symptoms of Impending Death
Attitudes Toward Dying and Death
Conclusion