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Pediatric Hospice Care: Not the Care of Small Adults

Hospice care is rarely considered for children with terminal illnesses in the United States, often with the devastating consequence of invasive interventions being used until death. The profound survivor guilt is often unaddressed in standard care. Hospice, however, helps families communicate better with the dying child and enables them to care for him or her, lessening their guilt. Yet hospice is often withheld from children. The reasons for this are explored. One solution is The Butterfly Program. The sole admission requirement is an expectation that the child will not live to adulthood. The program is described and compared to standard hospice in the United States, a pediatric inpatient hospice in Canada, and the English model of pediatric hospice.