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Children's Hospital and Regional Medical Center
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, M.D. and Ross Hays, M.D., Children's Hospital and Regional Medical Center researchers in Seattle, WA, worked to turn this situation around. In the project, Pediatric Palliative Care Program, both patients and their families evaluated medical indicators, quality of life, patient preferences and financial and legal considerations soon after the diagnosis of a life-threatening illness. The project utilized 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 incorporated 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 developed procedures for flexible insurance benefits, ensuring that reimbursement was obtained for services that best met the needs of the child and family. The researchers evaluated both clinical and financial outcomes of the project.
After the Grant
Although the project was concluded at then end of the grant period, a palliative care consulting service was established at Children’s Hospital. This hospital-funded service was established to enable the continuation of educational and consulting work begun by the grant team. A commitment to quality in all levels of care led Children’s Hospital to elect funding this service.
Promoting Excellence in End-of-Life Care was 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.