Updated February 17, 2005
In the United States a number of factors commonly conspire to prevent dying children and their families from receiving the high-quality care they deserve, when and where they need it. Society is reluctant to admit that children can and do die; medical education on end-of-life care for children is deficient; doctors, nurses, hospitals and even hospices encounter dying children relatively infrequently, and insurance benefits are designed to maximize life-saving care.
Under the direction of Russell Geyer, MD and Ross Hays, MD, Children's Hospital and Regional Medical Center researchers in Seattle, WA, are turning this situation around. In the project, "Pediatric Palliative Care Program," both patients and their families evaluate medical indicators, quality of life, patient preferences and financial and legal considerations soon after the diagnosis of a life-threatening illness. The project utilizes a groundbreaking decision-making tool that involves patients and families in care planning for progressive, potentially terminal illnesses among children. To optimize comfort and quality of life when a child has a progressive life-limiting illness, planning for the child's care incorporates pediatric pain and symptom management protocols.
This statewide program represents a unique collaboration among Children's Hospital, local and state hospice organizations, the Washington Department of Health and the area's two largest insurers, Regence Blue Shield and Premera. The joint project developes procedures for flexible insurance benefits, ensuring that reimbursement is obtained for services that best meet the needs of the child and family. The researchers evaluate both clinical and financial outcomes of the project.
Read a detailed profile of the Children's Hospital and Regional Medical Center program. The profile includes a brief synopsis of program characteristics, successes, challenges and more.
Web site: http://www.seattlechildrens.org
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Promoting Excellence in End-of-Life Care is a national program of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.