This summary is based on the Institute of Medicine report When Children Die: Improving Palliative and End-of-Life Care for Children and their Families, Marilyn J. Field and Richard E. Behrman, Editors. The report was prepared by a committee consisting of:
Richard E. Behrman, MD, JD, (Chair) Executive Chair, Federation of Pediatric Organizations, Education Steering Committee; Clinical Professor of Pediatrics, Stanford University and the University of California
Grace H. Christ, DSW, Associate Professor, Columbia University School of Social Work
Francis Sessions Cole, MD, 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, MD, Vice President and Senior Associate Dean for Translational Research, Columbia University Health Sciences
Joanne Hilden, MD, Chair, Department of Pediatric Hematology/Oncology; Director, Pediatric Palliative Care, The Children’s Hospital at The Cleveland Clinic; Co-Chair, Children’s Oncology Group End-of-Life Care Subcommittee
Pamela Hinds, BSN, PhD, Director of Nursing Research, St. Jude Children’s Research Hospital, Memphis
Angela R. Holder, LLM, 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, PhD, Assistant Professor of Health Economics, Harvard Medical School, Department of Health Care Policy
Robert Kliegman, MD, Professor and Chair, Department of Pediatrics, Medical College of Wisconsin; Pediatrician in Chief, Pamela and Leslie Muma Chair in Pediatrics Children’s Hospital of Wisconsin, Medical College of Wisconsin
Marcia Levetown, MD, Pain and Palliative Care Education Consultant, Houston
Neil L. Schechter, MD, 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, PhD, Kriewall-Haehl Director of Pediatric Palliative Care, Lucile Packard Children’s Hospital; Associate Professor of Pediatrics and Psychiatry, Stanford University School of Medicine
Lizabeth Sumner, RN, BSN, Children’s Program Director, San Diego Hospice Corporation
Joseph L. Wright, MD, MPH, 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
IOM Staff
Marilyn J. Field, PhD, Study Director
Susan Stefanac, Research Assistant (to June 2001)
Travis Gayles, Research Assistant (from September 2001)
Troy Prince, Senior Project Assistant
Editing
Donna Bell Sanders, MPH, California Family Health Council
Art Work
Timothy C. Costich, MD, original photograph
Francesca Moghari, initial photoediting
Sue Parkinson, design
Funding
Funding for this summary was provided by the Open Society Institute and the Robert Wood Johnson Foundation.
This summary and the original report can be viewed or purchased at www.nap.edu.
We can improve palliative care for very ill children and their families.
The life-threatening illness or death of a child is overwhelming and hard to face. This booklet outlines ways health care professionals, policy makers, insurers, and family advocates can work together to improve the kind of care very ill or dying children receive.
We can help create a care system that all children and families can rely on and trust. We can:
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Help prevent or relieve pain and suffering.
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Provide children and families with the information they need.
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Give them emotional support.
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Respect families’ choices and values.
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Help families make difficult decisions.
These are some of the ways palliative care supports and comforts children and their families.
THE NATIONAL ACADEMIES™ Advisers to the Nation on Science, Engineering, and Medicine The nation turns to the National Academies—National Academy of Sciences, National Academy of Engineering, Institute of Medicine, and National Research Council—for independent, objective advice on issues that affect people’s lives worldwide. |