IOM Report Urges Better Care and Support for Dying Children

WASHINGTON—Dying children and their families often fail to get consistent care and effective help to meet spiritual, physical, and emotional needs, according to a new report from the Institute of Medicine. In funding research on dying children and their families, the report concluded, the National Institutes of Health should begin priority studies to improve the treatment of pain and aspects of care affecting families.

The report was prepared by a 14-member committee chaired by Richard E. Behrman, MD, JD, University of California, San Francisco.

Insurance, the report said, is often a problem. Most elderly patients are covered by Medicare, but about 15% of children have no medical insurance. Many others are covered by a hodgepodge of private and public insurers, which puts added pressure on their families.

Moreover, complex and restrictive health insurance rules can interfere with the continuity of a child’s care. The panel recommended revising Medicaid and private insurance rules that bar providing life-prolonging therapies to patients receiving hospice care.

The report also cited frustration as a major problem for parents coordinating their children’s care. It suggested that hospitals, hospices, and others involved in the caregiving process work together to promote the flow of needed information. Procedures and protocols are also needed to establish accountability of care.

Another problem cited in the report was the lack of trained health care professionals knowledgeable about end-of-life care and techniques for dealing with bereavement. Even fewer professionals are ready to deal with the special needs of dying children and their families.