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--> Approaching Death IMPROVING CARE AT THE END OF LIFE Committee on Care at the End of Life Marilyn J. Field and Christine K. Cassel, Editors Division of Health Care Services INSTITUTE OF MEDICINE NATIONAL ACADEMY PRESS Washington, D.C. 1997
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--> 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. Additional copies of this report are available for sale from: National Academy Press, Lock Box 285, 2101 Constitution Avenue, N.W., Washington, DC 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP on-line bookstore at http://www.nap.edu/nap/bookstore. Call (202) 334-2352 for more information on the other activities of the Institute of Medicine, or visit the IOM home page at http://www.nas.edu/iom. 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′75′0973—dc21 97-21175 Copyright 1997 by the National Academy of Sciences. All rights reserved. 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.
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--> 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, Institute 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.
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--> 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
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--> 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
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--> 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
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--> 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
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--> 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 Berry 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
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--> 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.
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--> Contents SUMMARY 1 1 INTRODUCTION 14 The Need for Consensus and Action, 17 Initiatives to Improve Care at the End of Life, 18 Overview of Report, 21 Guiding Principles, 22 Concepts and Definitions, 23 Conclusion, 32 2 A PROFILE OF DEATH AND DYING IN AMERICA 33 When People Die: The Aging of America, 34 Why People Die: Causes of Death, 37 Where People Die: Death in Institutions and Residences, 39 How People Die: Symptoms of Impending Death, 42 Attitudes Toward Dying and Death, 44 Conclusion, 46 3 CARING AT THE END OF LIFE 50 Differences in Dying Pathways: Illustrative Cases, 52 Determining and Communicating Diagnosis and Prognosis, 59 Establishing Goals and Plans, 64 Fitting Care to Goals and Circumstances, 72 Conclusion, 86
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--> 4 THE HEALTH CARE SYSTEM AND THE DYING PATIENT 87 Characterizing Care Systems, 88 Illustrative Case Histories, 90 Settings for End-of-Life Care, 95 Coordinating Care Within and Across Settings, 107 Revisiting the Care System at the Community and National Levels, 116 Conclusion, 118 Addendum, 119 5 ACCOUNTABILITY AND QUALITY IN END-OF-LIFE CARE 122 Concepts of Accountability and Quality, 123 Evidence of Quality Problems in End-of-Life Care, 126 Dimensions of Quality in Care at the End of Life, 135 Measurement Instruments and Issues, 139 Guidelines for Clinical Practice, 149 Conclusion, 152 6 FINANCIAL AND ECONOMIC ISSUES IN END-OF-LIFE CARE 154 Who Pays for Care at the End of Life?, 155 What Is Spent for Care at the End of Life?, 156 Do Financing Mechanisms Impede Good End-of-Life Care?, 160 What About Proposals to Reduce the Cost of End-of-Life Care?, 173 Conclusion, 184 Addendum, 185 7 LEGAL ISSUES 188 Prescription Laws and Barriers to Pain Relief, 190 Informed Consent and Advance Care Planning, 198 Physician-Assisted Suicide, 203 Conclusion, 206 8 EDUCATING CLINICIANS AND OTHER PROFESSIONALS 207 Core Components of Professional Preparation for Care at the End of Life, 209 Physician Education, 210 Nursing, Social Work, and Other Professions, 227 Continuing Professional Education, 231 Conclusion, 232
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--> 9 DIRECTIONS FOR RESEARCH TO IMPROVE CARE AT THE END OF LIFE 235 A Symptom-Based Strategy for Biomedical Research, 236 Social, Behavioral, and Health Services Research, 244 Ethical Issues in Research on Dying Patients, 251 Research Leadership, 253 Conclusion, 258 10 CONCLUSIONS AND RECOMMENDATIONS 259 Today and Tomorrow, 260 Findings and Recommendations, 263 Concluding Thoughts, 271 REFERENCES 272 APPENDIXES A Institute of Medicine Feasibility Study on Care at the End of Life August 1993–February 1994 315 B Institute of Medicine Committee on Care at the End of Life Public Meetings 321 C Examples of Initiatives to Improve Care at the End of Life 327 D Prognosis and Clinical Predictive Models for Critically Ill Patients 358 E Cultural Diversity in Decisionmaking About Care at the End of Life 363 F Measuring Care at the End of Life 383 G Excerpts from Medical Guidelines for Determining Prognosis in Selected NonCancer Diseases 400 H American Board of Internal Medicine Clinical Competence in End-of-Life Care 405 I Examples of Medical Education Curricula 407 J Committee Biographies 413 INDEX 419
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--> Tables, Figures, and Boxes Tables 2.1 Infant Mortality Rates for the Ten Leading Causes of Infant Death, by Race: United States, January 1995, 38 2.2 Percentage Distribution for Locations Lived During the Last 90 Days of Life, According to Age and Sex (Survey of the Last Days of Life), 41 3.1 General Suggestions for Age-Appropriate Communication for Dying Children, 65 3.2 Adapting Advance Care Planning to Patient Circumstances: Possible Issues and Actions, 69 3.3 Primary Emphases of Care for Those with Different Goals Related to Life-Threatening Illness or Injury, 83 5.1 Symptoms Reported in 1969 and 1987 for Cancer and Other Deaths in Two English Studies, 130 5.2 Dimensions of Quality in Care of Dying Patients and Related Quality Strategies, 136 5.3 Categories of Patient/Family Outcome Measures for End-of-Life Care, 142 6.1 Medicare Payments Per Person-Year, According to Survival Status and Age, 1976 and 1988, 159 6.2 Medicare Enrollment and Payments, According to Survival Status, in 1976, 1980, 1985, and 1988, 160 Figures 1.1 Prototypical death trajectories, 29 2.1 Crude and age-adjusted death rates: United States, 1940–1990, 35 2.2 Life expectancy at birth by gender, 1900–1990, 36 2.3 Rates of consciousness and ability to communicate, 43 3.1 Alternative models of end-of-life care, 85 4.1 Interdisciplinary team for palliative home care, 110 5.1 Rates of severe symptoms in patients three days before death, as reported by family members, 129 Boxes S.1 A Whole-Community Model for Care at the End of Life, 10 S.2 Professional Preparation for End-of-Life Care, 11 3.1 Communicating a Bad Prognosis to Patients and Families, 62 3.2 Examples of Communicating a Bad Prognosis, 63
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--> 3.3 Values Questionnaire Adapted from the Vermont Ethics Network, 67 3.4 Assessments Needed in Devising Palliative Care Plan, 74 3.5 Major Physical and Psychological Symptoms, 76 3.6 Practical Dimensions of Care for Patients and Families, 81 4.1 A Whole-Community Model for Care at the End of Life, 117 5.1 Guidelines for Improving the Quality of Treatment for Acute Pain and Cancer Pain, 127 5.2 Barriers to Cancer Pain Management, 133 5.3 Quality Domains Suggested by the American Geriatric Society, 140 5.4 Illustrative Examples of Items Proposed to Measure Individual Perceptions or Experiences, 144 5.5 Desirable Attributes of Outcomes Assessment Instruments Based on Criteria Developed by the Medical Outcomes Trust, 146 6.1 Implicit Age-Related Limitation of Care, 182 8.1 Professional Preparation for End-of-Life Care, 211 9.1 Limiting Factors in Research to Improve Care at the End of Life, 254
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