Comparing pediatric deaths with and without hospice support

Although pediatric hospice care is commonly accepted as a beneficial intervention, the incremental advantage over end-of-life care delivered without engaging hospice remains unknown. The primary objective of this study was to describe differences in pediatric end-of-life care when delivered with and without hospice support, as perceived by the medical provider.

A retrospective survey of medical providers was conducted in 2005 over a 2-month period at a single institution, the Helen DeVos Children's Hospital (HDVCH). Medical providers with self-determined experience in pediatric end-of-life care were asked to separately provide positive and negative comments about their experience with hospice. Additionally they were asked to describe differences between children under their supervision who died with and without hospice care. Medical provider comments and comparisons of experiences in caring for children dying with and without hospice involvement are described.

Out of 157 responders, 43 reported positive comments about the hospice intervention. Non-medical support and location of death were the most frequently cited benefits. Nineteen responders provided negative comments about hospice; all involving feelings of lost hope, intrusion, or distrust. When asked to directly compare deaths with and without hospice support, 44 of 51 (86%) responders favored hospice. The most cited reason for preferring hospice involvement was better provision of non-medical services.

The majority of pediatric providers in this survey observed an advantage to utilizing hospice care for dying children as compared to providing end-of-life care without hospice involvement.