. "Summary." When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press, 2003.
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In addition, children and young families are disproportionately represented among immigrants and thus are especially vulnerable to misunderstandings related to differences in language, cultural experiences, and values about life, illness, death, and medical or nonmedical therapies. Millions of children, both immigrants and native born, live with their families in unsafe environments that put them at high risk of injury. Such environments can also make it a challenge to get a child to the doctor, pick up a prescription, or persuade a home care provider to come into the neighborhood. These broader problems are not the subject of this report, but their contribution to deficits in care for children and their families should be recognized in strategies to improve pediatric palliative, end-of-life, and bereavement care.
WORKING PRINCIPLES
In general, the basic working principles and starting points set forth in the 1997 IOM report apply to children as well as adults. Some details differ, however, and certain additional values apply either uniquely or with special emphasis to children. Of the principles adopted by this committee (Box S.1), the first three are specific to children; the other four restate earlier principles from the 1997 report in terms of children.
Box S.1 Working Principles for Pediatric Palliative, End-of-Life, and Bereavement Care
Appropriate care for children with life-threatening medical conditions and their families is designed to fit each child’s physical, cognitive, emotional, and spiritual level of development.
Good care involves and respects both the child and the family.
Families are part of the care team.
Effective and compassionate care for children with life-threatening conditions and for their families is an integral and important part of care from diagnosis through death and bereavement.
Professionals caring for children have special responsibilities for educating themselves and others about the identification, management, and discussion of the last phase of a child’s fatal medical problem.
Both individual change and organizational change are needed to provide consistently excellent palliative, end-of-life, and bereavement care for children and their families.
More and better research is needed to increase our understanding of clinical, cultural, organizational, and other practices or perspectives that can improve palliative, end-of-life, and bereavement care for children and families.
