Date: July 25, 2002
Contacts: Christine Stencel, Media Relations Officer
Andrea Durham, Media Relations Assistant
(202) 334-2138; e-mail <>

Publication Announcement

Improving Care for Dying Children
Requires Comprehensive Approach

While advances in public health and medical technologies have significantly reduced childhood mortality, tens of thousands of children still die from illnesses and injuries every year in the United States. The care they receive not only affects them, but also has a profound and lasting impact on family members. Parents often must simultaneously cope with the shock of a child's grave illness or injury, make difficult decisions about treatment, and navigate complex organizational, financial, and regulatory systems. Too often, these patients and their families fail to receive effective and consistent care that meets their physical, emotional, and spiritual needs, says a new report from the National Academies' Institute of Medicine. It outlines specific recommendations for a more comprehensive approach to care that could spare dying children and their families from suffering that is preventable.

The report includes fictional stories, based on many real experiences of families with dying children, that illustrate the successes and shortcomings of palliative, end-of-life, and bereavement care today. Palliative care refers to efforts to prevent and alleviate symptoms of a life-threatening illness or injury and enable the patient and family to live as normally as possible.

Many factors unique to dying children can complicate efforts to prevent and relieve a child's suffering and help families cope with a child's death. Physically and emotionally, children are not small adults. Infants, young children, and adolescents each may react differently to drugs and other therapies, and because of differences in children's physiology, doctors may find it more difficult to predict their survival following a serious illness or injury. The legal power to make care decisions rests solely with parents, who may be reluctant to involve their children, even adolescents, in discussions and decisions about their care. Also, unlike elderly adults, almost all of whom are covered by Medicare, about 15 percent of children lack health insurance entirely, and the rest are covered by a multitude of private and public insurers that vary in their coverage of palliative and end-of-life care.

Complex and restrictive health insurance rules can hamper continuity of care, limit access to experts, and discourage use of supportive services, such as grief counseling for surviving family members. Rules set by Medicaid and some private health plans that require families to choose between receiving hospice care and continuing life-prolonging therapy should be revised, said the committee that wrote the report. Even when the likelihood of benefit is remote, parents may be reluctant to halt attempts to save their child's life. Rules that limit hospice benefits to only patients who are not expected to survive longer than six months also should be eased, in part because of the complications involved in determining life expectancy for ill children.

One of the foremost frustrations cited by parents is the difficulty they experience in coordinating their children's care, the committee said. The number and variety of caregivers, institutions, and agencies that may become involved in a patient's care contribute to fragmented delivery of services. The report highlights several local and national initiatives that could serve as models for improving coordination and delivery of care, although more evalution is needed. Hospitals, hospices, and other organizations should collaborate to promote effective symptom management, coordinated and continuous care, and the timely flow of information among caregivers, facilities, and families. They also should develop procedures and protocols to establish accountability for care.

Few health care professionals are trained in palliative, bereavement, and end-of-life care, and even fewer are equipped to handle the specialized needs of pediatric patients with potentially or inevitably fatal conditions, the committee found. All physicians who care for pediatric patients should have a basic level of training in this type of care, and those who routinely care for children with life-threatening conditions should be well prepared to provide this care, the committee said. One problem, however, is the limited scientific research to guide professionals and families. In funding research on life-threatening conditions affecting children, the National Institutes of Health should establish priorities for studies to improve treatment of pain and other aspects of palliative, end-of-life, and bereavement care.

A committee roster follows. The study was sponsored by the National Institutes of Health, Open Society Institute, Greenwall Foundation, and Robert Wood Johnson Foundation. The Institute of Medicine is a private, nonprofit organization that provides advice on health policy issues under a congressional charter to the National Academy of Sciences.

Copies of When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families will be available later this summer from the National Academy Press; tel. (202) 334-3313 or 1-800-624-6242 or on the Internet at Reporters may obtain a pre-publication copy from the Office of News and Public Information (contacts listed above).

Board on Health Sciences Policy

Committee on Palliative and End-of-Life Care for Children
and Their Families

Richard E. Behrman, M.D., J.D. *(chair)
Executive Chair
Federation of Pediatric Organizations
Education Steering Committee, and
Clinical Professor of Pediatrics
University of California
San Francisco, and
Stanford University

Grace H. Christ, D.S.W.
Associate Professor
School of Social Work
Columbia University
New York City

Francis Sessions Cole III, M.D.
Park J. White M.D. Professor of
Pediatrics, and
Vice Chairman
Department of Pediatrics
School of Medicine
Washington University; and
Division of Newborn Medicine
St. Louis Children's Hospital
St. Louis

Harvey R. Colten, M.D. *
Vice President and Senior Associate Dean
for Translational Research
Columbia University Health Sciences
New York City

Joanne Hilden, M.D.
Department of Pediatric Hematology/Oncology
Cleveland Clinic Foundation, and
End-of-Life Care Subcommittee
Children's Oncology Group
St. Paul, Minn.

Pamela Hinds, B.S.N., Ph.D.
Director of Nursing Research
St. Jude's Children's Research Hospital
Memphis, Tenn.

Angela R. Holder, L.L.M.
Center for the Study of Medical Ethics and Humanities, and
Department of Internal Medicine
Duke University Medical Center
Durham, N.C.

Haiden A. Huskamp, Ph.D.
Assistant Professor of Health Economics
Department of Health Care Policy
Harvard Medical School
Cambridge, Mass.

Robert Kliegman, M.D.
Professor and Chair
Department of Pediatrics
Pediatrician in Chief, and
Pamela and Leslie Muma Chair in Pediatrics
Children's Hospital of Wisconsin
Medical College of Wisconsin

Marcia Levetown, M.D.
Independent Consultant
Pain and Palliative Care Education

Neil L. Schechter, M.D.
Professor of Pediatrics, and
Division of Developmental
Behavioral Pediatrics
University of Connecticut School of
Medicine; and
Pain Relief Program
Connecticut Children's Medical Center, and
St. Francis Hospital

Barbara M. Sourkes, Ph.D.
Kriewall-Haehl Director of
Palliative Care
Lucile Packard Children's Hospital, and
Associate Professor
Department of Pediatrics and Psychiatry
School of Medicine
Stanford University

Lizabeth Sumner, R.N., B.S.N.
Children's Program Director
San Diego Hospice Corp.
San Diego

Joseph L. Wright, M.D., M.P.H.
Medical Director
Advocacy and Community Affairs
Children's National Medical Center, and
Associate Professor
Department of Pediatrics, Emergency Medicine, and Community Health
School of Medicine
George Washington University
Washington, D.C.


Marilyn Field, Ph.D.
Study Director

* Member, Institute of Medicine