Cover Image

Not for Sale



View/Hide Left Panel

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.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 13
When Children Die: Improving Palliative and End-of-Life Care For Children and Their Families 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.

OCR for page 13
When Children Die: Improving Palliative and End-of-Life Care For Children and Their Families 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: Help prevent or relieve pain and suffering. Provide children and families with the information they need. Give them emotional support. Respect families’ choices and values. 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. www.national-academies.org