Date: July 25, 2002 Contacts: Christine Stencel, Media Relations Officer Andrea Durham, Media Relations Assistant (202) 334-2138; e-mail <email@example.com>
FOR IMMEDIATE RELEASE
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.
INSTITUTE OF MEDICINE 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 Stanford
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 Director 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. Chair Department of Pediatric Hematology/Oncology Cleveland Clinic Foundation, and Co-Chair 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. Professor 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 Milwaukee
Marcia Levetown, M.D. Independent Consultant Pain and Palliative Care Education Houston
Neil L. Schechter, M.D. Professor of Pediatrics, and Head Division of Developmental Behavioral Pediatrics University of Connecticut School of Medicine; and Director Pain Relief Program Connecticut Children's Medical Center, and St. Francis Hospital Hartford
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 Stanford
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.
INSTITUTE OF MEDICINE STAFF
Marilyn Field, Ph.D. Study Director * Member, Institute of Medicine