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.