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WHEN CHILDREN DIE IMPROVING PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILIES Committee on Palliative and End-of-Life Care for Children and Their Families Board on Health Sciences Policy Marilyn J. Field and Richard E. Behrman, Editors INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W.Washington, DC20001 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. Major support for this project was provided by the National Institute for Nursing Research (NIH Task Order #79), the Greenwall Foundation, the Project on Death in America of the Open Society Institute, and the National Cancer Institute. Additional support was provided by the Health Services and Resources Administration, the Robert Wood Johnson Foundation, the National Heart Lung and Blood Institute, the National Institute of Mental Health, and the National Institute for Child Health and Development. The views presented are those of the Institute of Medicine Committee on Palliative and End-of-Life Care for Children and Their Families and are not necessarily those of the funding organization. Library of Congress Cataloging-in-Publication Data When children die : improving palliative and end-of-life care for children and their families / Committee on Palliative and End-of-Life Care for Children and Their Families, Board on Health Sciences Policy ; Marilyn J. Field and Richard E. Behrman, editors. p. ; cm. Includes bibliographical references and index. ISBN 0-309-08437-7 (hardcover) 1. Terminally ill children—Care. 2. Terminally ill children—Family relationships. 3. Palliative treatment. [DNLM: 1. Terminal Care—Child—United States. 2. Health Policy—United States. 3. Patient Participation—Child—United States. 4. Professional-Family Relations—United States. 5. Terminal Care—economics—United States. 6. Terminal Care—legislation & jurisprudence—United States. WS 200 W567 2002] I. Field, Marilyn J. (Marilyn Jane) II. Behrman, Richard E., 1931- III. Institute of Medicine (U.S.). Committee on Palliative and End-of-Life Care for Children and Their Families. RJ249 .W445 2002 362.1’75’083—dc21 2002014542 Additional copies of this report are available from: The National Academies Press, 500 Fifth Street, N.W., Box 285, Washington, DC20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, www.nap.edu Copyright 2003 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Front cover: Original photograph by Timothy D. Costich, M.D., F.A.A.P.; design and photo manipulation by Francesca Moghari.
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“Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Shaping the Future for Health
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THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org
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COMMITTEE ON PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILIES Richard E. Behrman (Chair), Executive Chair, Federation of Pediatric Organizations, Education Steering Committee, and Clinical Professor of Pediatrics, Stanford University and the University of California Grace H. Christ, Associate Professor, Columbia University School of Social Work Francis Sessions Cole, Park J. White M.D. Professor of Pediatrics and Vice-Chairman, Department of Pediatrics, Washington University School of Medicine; Director, Division of Newborn Medicine, St. Louis Children’s Hospital Harvey R. Colten, Vice President and Senior Associate Dean for Translational Research, Columbia University Health Sciences Joanne Hilden, Chair, Department of Pediatric Hematology/Oncology, The Children’s Hospital at The Cleveland Clinic and Co-Chair, Children’s Oncology Group End-of-Life Care Subcommittee. Pamela Hinds, Director of Nursing Research, St. Jude Children’s Research Hospital, Memphis Angela R. Holder, Professor of the Practice of Medical Ethics, Center for the Study of Medical Ethics and Humanities, Department of Internal Medicine, Duke University Medical Center Haiden A. Huskamp, Assistant Professor of Health Economics, Harvard Medical School, Department of Health Care Policy Robert Kliegman, Professor and Chair, Department of Pediatrics, Medical College of Wisconsin, and Pediatrician in Chief, Pamela and Leslie Muma Chair in Pediatrics, Children’s Hospital of Wisconsin, Medical College of Wisconsin Marcia Levetown, Pain and Palliative Care Education Consultant, Houston Neil L. Schechter, Professor of Pediatrics and Head, Division of Developmental Behavioral Pediatrics, University of Connecticut School of Medicine; Director, Pain Relief Program, Connecticut Children’s Medical Center and St. Francis Hospital, Hartford Barbara M. Sourkes, Kriewall-Haehl Director of Pediatric Palliative Care, Lucile Packard Children’s Hospital, and Associate Professor of Pediatrics and Psychiatry, Stanford University School of Medicine Lizabeth Sumner, Children’s Program Director, San Diego Hospice Corporation Joseph L. Wright, Medical Director, Advocacy and Community Affairs, Children’s National Medical Center and Associate Professor of Pediatrics, Emergency Medicine and Community Health, George Washington University School of Medicine
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Liaison, IOM Board on Health Sciences Policy Phillip Pizzo, Dean, School of Medicine, Stanford University Committee Consultants Mildred Solomon, Director, Center for Applied Ethics, Education Development Center, Inc., and Associate Clinical Professor of Social Medicine and Anaesthesia, Harvard Medical School Cynda Hylton Rushton, Assistant Professor, Program Director, Harriet Lane Compassionate Care, Johns Hopkins University and Children’s Center Joanne Wolfe, Medical Director, Pediatric Advanced Care Team, Dana-Farber Cancer Institute and Children’s Hospital of Boston Commissioned Paper Authors George A. Bonanno, Clinical Psychology Program, Columbia University Andrew S. Bradlyn, Associate Professor and Director, Health Behavior Research Center, Robert C. Byrd Health Sciences Center, West Virginia University Elizabeth (Betty) Davies, Professor and Chair, Department of Family Health Care Nursing, University of California, San Francisco James P. Donnelly, Assistant Professor, Department of Counseling, School and Educational Psychology, State University of New York at Buffalo Bruce Himelstein, Palliative Care Program Director, Children’s Hospital of Wisconsin Susan M. Huff, Director, The Essential Care Program, Center for Hospice and Palliative Care, Buffalo Christina M. S. Johns, Fellowship Director, Pediatric Emergency Medicine, Children’s National Medical Center, Emergency Medicine and Trauma Center Jill G. Joseph, Director of Center for Health Services and Community Research, Children’s National Medical Center, and Professor of Pediatrics, George Washington University School of Medicine Javier R. Kane, Associate Professor of Pediatrics, The University of Texas Health Science Center; Director, Palliative Medicine Program, CHRISTUS Santa Rosa Children’s Hospital Barbara A. Koenig, Associate Professor of Medicine and Executive Director, Center for Biomedical Ethics, Stanford University Michael L. Lindsey, Data Coordinator, Office of Continuing Care, New York State Department of Health.
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Ruth Malkinson, School of Social Work, Tel Aviv University, Israeli Center for REBT Murray M. Pollack, Executive Director, Center for Hospital-Based Specialties; Chief, Critical Care Medicine, Children’s National Medical Center; Professor of Pediatrics, George Washington University School of Medicine J. Donald Schumacher, President and CEO, The Center for Hospice and Palliative Care, Buffalo Simon Shimshon Rubin, Professor of Psychology, Clinical Psychology Program, University of Haifa, Israel James Walter Varni, Professor of Psychiatry, University of California, San Diego, School of Medicine Study Staff Marilyn J. Field, Study Director Susan Stefanac, Research Assistant (to June 2001) Travis Gayles, Research Assistant (from September 2001) Troy Prince, Senior Project Assistant Board on Health Sciences Policy Staff Andrew Pope, Director, Board on Health Sciences Policy Alden Chang, Board Assistant
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DEDICATION To all the children and families whose lives and whose stories have helped us to learn and to advocate for changes that will benefit other children and families
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CONTENTS PREFACE xv ACKNOWLEDGMENTS xvii REVIEWERS xix SUMMARY 1 Context and Challenges, 3 Working Principles, 7 Providing and Organizing Child- and Family-Centered Care, 8 Financing, 11 Legal and Ethical Issues, 14 Education of Health Professionals, 15 Directions for Research, 17 1 INTRODUCTION 19 Problems and Challenges, 21 Improving Palliative, End-of-Life, and Bereavement Care for Children and Their Families, 24 Study Origins and Report Overview, 26 Guiding Principles, 28 Concepts and Definitions, 32 2 PATTERNS OF CHILDHOOD DEATH IN AMERICA 41 Childhood Death in the Context of Improved Child Health, 41 Infant, Fetal, and Perinatal Deaths, 49 Mortality for Children Aged 1 to 4 and 5 to 9, 56
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Mortality for Children Aged 10 to 14 and 15 to 19, 59 Gender, Socioeconomic, and Other Differences and Disparities in Child Mortality, 61 Where Children Die, 66 Implications, 70 3 PATHWAYS TO A CHILD’S DEATH 72 Trajectories of Dying, 73 Illustrative Stories of Children and Their Families, 76 Pathways of Care, 85 What Do We Know About the Focus and Adequacy of Care for Children Who Die?, 88 Implications, 102 4 COMMUNICATION, GOAL SETTING, AND CARE PLANNING 104 What Is Happening? Determining and Communicating Diagnosis and Prognosis, 106 What Are Our Options? Establishing Goals, 125 What Will Help My Child and My Family? Fitting Care to Goals and Circumstances, 134 5 CARE AND CARING FROM DIAGNOSIS THROUGH DEATH AND BEREAVEMENT 141 The Physical Dimensions of Care, 142 The Emotional and Psychological Dimensions of Care, 153 The Spiritual Dimensions of Care, 162 The Practical Dimensions of Care, 167 Grief and Bereavement Care , 171 6 PROVIDING, ORGANIZING, AND IMPROVING CARE 180 Accountability and Quality, 181 The Challenges of Coordination and Continuity, 187 Health Care Professionals, 195 Organizations and Settings of Care, 203 Community and Regional Systems of Care, 224 Directions for Professionals and Institutions, 227 7 FINANCING OF PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILIES 234 Who Pays for Palliative and End-of-Life Care for Children?, 236 How Physicians, Hospitals, and Other Providers Are Paid, 265 Managed Care and End-of-Life Care, 283 Directions for Policymakers and Insurers, 287
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8 ETHICAL AND LEGAL ISSUES 293 Types of Decisions, 295 Ethical Considerations, 302 Strategies for Preventing or Resolving Parent–Clinician and Other Conflicts About Clinical Care, 308 Legal Considerations, 318 Conclusion, 327 9 EDUCATING HEALTH CARE PROFESSIONALS 328 Basics of Health Professions Education for Pediatric Palliative and End-of-Life Care, 330 Current Status of Professional Preparation in Palliative and End-of-Life Care for Children and Their Families, 334 Initiatives to Improve Education for Pediatric Palliative and End-of-Life Care, 339 Directions for Educators, 348 10 DIRECTIONS FOR RESEARCH 350 Initiatives to Encourage Pediatric Research, 351 Directions for Future Research, 355 Challenges of Research on Palliative and End-of-Life Care for Children and Their Families, 385 Ethical and Legal Issues in Research Involving Children, 386 Conclusion, 391 REFERENCES 392 APPENDICES A Study Origins and Activities 445 B Prognostication Scores 449* C Assessing Health-Related Quality of Life in End-of-Life Care for Children and Adolescents* 476 D Cultural Dimensions of Care At Life’s End for Children and Their Families* 509 E Bereavement Experiences After the Death of a Child 553* F End-of-Life Care in Emergency Medical Services for Children 580* G Education in Pediatric Palliative Care 599* H Progress in Pediatric Palliative Care in New York State– A Demonstration Project* 638 I Committee Biographical Statements 665 INDEX 671 * Appendices B through H are available only online at http://www.nap.edu/catalog/10390.html
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BOXES, FIGURES, AND TABLES Boxes S.1 Working Principles for Pediatric Palliative, End-of-Life, and Bereavement Care, 7 1.1 Working Principles for Pediatric Palliative, End-of-Life, and Bereavement Care, 29 4.1 Presenting Bad News to Families, 116 4.2 Example of Communicating a Grim Diagnosis, 118 4.3 Assessments Needed in Devising and Revising a Palliative Care Plan, 136 5.1 Major Physical Symptoms That May Be Experienced by Children with Life-Threatening Medical Conditions, 146 5.2 Examples of Practical Dimensions of Care for Patients and Families, 169 6.1 Elements of Child- and Family-Centered Health Care, 191 6.2 Ideal Elements of the Medical Home for Children, 192 6.3 Questions About Inpatient Palliative, End-of-Life, and Bereavement Care for Children and Their Families, 212 6.4 Questions About Palliative Home Health and Hospice Care for Children and Their Families, 218 6.5 Objectives of Community Systems of Palliative, End-of-Life, and Bereavement Care, 225 7.1 Scope of Medicaid EPSDT Services for Enrolled Children Required by Federal Statute (42 U.S.C. § 1396d(a)(22)), 252 8.1 Institutional Ethics Committees (IEC): Recommendations of the American Academy of Pediatrics, 313 8.2 Due Process Approach to Disputes About End-of-Life Care, 313 8.3 Conflict Prevention in the ICU: One Cooperative Strategy to Reduce Conflict by Improving Care for the Critically Ill, 315 9.1 Preparing Health Care Professionals to Provide Palliative, End-of-Life, and Bereavement Care to Children and Families, 332 9.2 Program Requirements for Residency Education, 342
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10.1 Directions for Research on Quality-of-Life Measures for Children and Families, 359 10.2 Directions for Research on Assessment and Management of Symptoms, 362 10.3 Directions for Research on Perinatal Death and Bereavement, 366 10.4 Directions for Research on Sudden and Unexpected Death, 368 10.5 Directions for Research on Bereavement Care, 371 10.6 Directions for Research on Models of Care Delivery, 374 10.7 Directions for Research on Financing of Palliative, End-of-Life, and Bereavement Care, 380 10.8 Directions for Research on Educating Health Care Professionals, 383 10.9 Categories of Research Involving Children That May Be Approved for Federal Funding, 388 Figures S.1 Percentage of total childhood deaths by age group (1999), 4 S.2 Percentage of total childhood deaths by major causes (1999), 5 2.1 Percentage of total childhood deaths by major causes (1999), 46 2.2 Percentage of total childhood deaths by age group (1999), 52 2.3 Percentage distribution of childhood cancer mortality by type and age group, age <20 (1995), 58 3.1 Prototypical trajectories of child death, 74 3.2 Sequential versus integrated models of care for advanced illness, 86 7.1 Source of health insurance coverage for children ages 0 to 18, 237 Tables 2.1 Top Ten Causes of Death, Numbers of Deaths by Cause and Total, and Total Death Rates, by Age Group (1999), 44 2.2 Percentage of All Deaths Due to Top Five Leading Causes, by Age (1999), 48 2.3 Terminology Relating to Infants and Fetuses, 50 2.4 Infant, Fetal, and Perinatal Mortality Rates, Selected Years 1950–1999, 51 2.5 Top Five Causes of Infant, Neonatal, and Postneonatal Mortality and Total Deaths (1999), 53
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2.6 Top Five Causes of Death in Children Aged 1–4 and 5–9 Years, Death Rates and Total Deaths (1999), 56 2.7 Top Five Causes of Death for Adolescents (1999), 60 2.8 Death Rates for Selected Causes by Geographic Region (1999), 63 2.9 Deaths Due to Injury Compared to Other Conditions, by Age and Race (1999), 67 3.1 Discordance Between the Reports of Parents and Physicians Regarding Children’s Symptoms in the Last Month of Life, 93 4.1 Common Goals and Examples of Supportive Care, 128 7.1 2002 Hospice Coverage Benefits for Blue Cross Blue Shield Federal Employees Health Insurance Plan, 242 8.1 Structuring Discussions to Reach Consensus About Care for Patients Who Lack Decision-Making Capacity, 311
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PREFACE When a child dies, it is always out of season. When a child dies, dreams die and we are all diminished by the loss of human potential. Although dying is a part of life, a child’s death, in a very real sense, is unnatural and has a devastating and enduring impact. Over the past century such deaths have been significantly reduced by socioeconomic, public health, and medical advances in developed countries such as the United States. Although with our current knowledge, we could do much more to decrease mortality among children and youth, even our best efforts will not prevent some children from dying. Nevertheless, we all have a mandate to ensure that their young lives do not end in preventable fear, pain and distress and that grieving families are comforted. This report argues that we can and should do more than we are currently doing to prevent and relieve the physical and emotional suffering of dying children and the psychic pain of their families, to respect the personal dignity of the dying child and grieving family, and to allow all who are affected by a child’s death the opportunity to address their feelings and concerns. Although there are many unanswered questions about optimal care in these tragic situations, a great deal is known about what should be done now to improve the care of dying children and their families. We can and must reduce the number of those who fail to receive consistent, competent care that meets not only their physical needs, but their emotional, spiritual, and cultural ones as well. The report also emphasizes the need to improve the professional education of a broad spectrum of groups, develop appropriate supporting public health policies, and provide high quality end-of-life and bereavement services for children and their families. Addressing these needs will require more scientific knowledge and data about the care of children with life-
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threatening medical conditions, including those of sudden unexpected onset. Behavioral changes by health providers and administrators, government officials, religious leaders, police and others will be required. Changes in policies at the federal, state, and local level are also critical if systems change in health care is to occur. By definition, children cannot advocate for themselves. When they are dying, an attuned listener can learn from them, but they are essentially voiceless in the public domain. Add to this the fact that in an end-of-life situation, their families, their most natural advocates, are often paralyzed by grief, and we can perhaps see why their plight has received so little attention. Although the number of children who die is, thankfully, relatively small, the event can devastate a family. While we cannot relieve all suffering, we can help prepare these children and families for what comes. It is hard to imagine a situation that has a greater imperative for humane caregiving, yet, far too often today, it is not provided. It is time to correct this situation. We hope this report will serve as a call to action. Richard E. Behrman, M.D., J.D. Committee Chair
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ACKNOWLEDGMENTS In developing its report, the committee benefited greatly from the assistance of many individuals and groups. Important information and insights came from a public meeting during which the committee heard from many organizations and from individuals with personal experiences that added an invaluable human dimension to our understanding. The committee also learned much from a smaller meeting with families and gives its special thanks to Rosario and Salvador Avila, Gary and Rose Conlan, Deborah Dokken, Winona Kittiko, Tina Heyl-Martineau, and Les Weil for their willingness to discuss their experiences and perspectives. Appendix A includes the meeting agendas and participant lists and also cites the organizations that provided written statements to the committee. The consultants to the committee, Mildred Solomon, Joanne Wolfe, and Cynda Rushton, provided valuable guidance at many points during the course of the committee’s work. The committee appreciates the contributions of the authors of background papers included in the appendixes to the report; Bruce Himelstein often provided help beyond his role as background paper author. Our project officer at the National Institute of Nursing Research, Anne Knebel, was unfailingly helpful in answering questions about the palliative care research agenda at the National Institutes of Health. Donna Hoyert, Joyce Martini, and others at the National Center for Health Statistics provided guidance on government mortality data. Melissa Harris, Theresa Pratt, and Tammi Levy-Cantor at the Center for Medicare and Medicaid Services helped with the intricacies of Medicaid policies, including those governing demonstration projects. Nancy Contro, Harvey Cohen, and others at the Lucile Packard Children’s Hospital at Stanford University generously shared the knowledge and insights they gained in developing their pediatric palliative care
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program, and Murray Pollack and his colleagues in the Pediatric Intensive Care Unit at Children’s National Medical Center in Washington, D.C., also provided insights into the day-to-day reality of caring for seriously ill children. Joan Teno and Sherry Weitzen of Brown University analyzed and provided data on the site of death for children. Anne-Armstrong Dailey, Kay Scanlon, and others at Children’s Hospice International were helpful on many matters and provided extensive information about the Medicaid hospice demonstration projects to test new models of all-inclusive care for children and their families. Among many others who provided information and answered questions are Stephen Connor at the National Hospice and Palliative Care Organization; Elaine Vining and Janis Guerney at the American Academy of Pediatrics; Susan Dull at the National Association of Children’s Hospitals and Related Institutions; Stacy Orloff at the Hospice of the Florida Suncoast; and Susan Huff at the Center for Hospice and Palliative Care in Buffalo, New York. Many within the Institute of Medicine were, as usual, helpful to the study staff. We would especially like to thank Alden Chang, Carlos Gabriel, Francesca Moghari, Sally Stanfield, Christine Stencel, and Bronwyn Schrecker.
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REVIEWERS This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’s (NRC) Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published reports as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: KEVIN BERGER, Hospice of the Valley, Phoenix DEBORAH L. DOKKEN, Consultant/Parent Advocate, Chevy Chase, Maryland CHRIS FEUDTNER, Child Health Institute, University of Washington KARIN T. KIRCHHOFF, School of Nursing, University of Wisconsin-Madison TIFFANY LEVINSON, Palliative Care Consultant, Wilmette, Illinois STEPHEN LIBEN, The Montreal Children’s Hospital JOANNE LYNN, Center to Improve Care of the Dying, The RAND Corporation STACY ORLOFF, Hospice of the Florida Suncoast, Largo JANE TILLY, Urban Institute, Washington, D.C. ROBERT TRUOG, The Children’s Hospital, Boston GARY WALCO, Center for Tomorrows Children, Hackensack University Medical Center
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Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by R. DON BLIM, appointed by the Institute of Medicine, and ELAINE L. LARSON, Professor of Pharmaceutical and Therapeutic Research, Columbia University School of Nursing, New York, NY. Appointed by the NRC Report Review Committee, these individuals were responsible for making certain that an independent examination of this report was carried out in accordance with the institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.
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WHEN CHILDREN DIE
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