End-of-Life Care for Children Enrolled in a Community-Based Pediatric Palliative Care Program

Background: Despite recent strides in pediatric palliative care (PPC), there are few published data on community-based care of dying children. Objective: Our aim was to describe end-of-life care during the last 6 months of life for children on a community-based PPC program. Methods: We conducted a retrospective review of children <21 years old who died while enrolled in a community-based PPC program (CompassionNet) from December 2004 through May 2008. Data were extracted on the last 6 months of life from hospital records (University of Rochester) and records of CompassionNet and its home-nursing team. Results: Thirty-six children died while enrolled in the CompassionNet program; diagnoses included cancer 20 (56%), genetic/neurologic disorders 7 (19%), cardiac anomalies 6 (17%), and other 3 (8%). In the last 6 months of life, there were a median of 2 emergency room visits (range 0-12) and 2 unplanned hospitalizations (range 0-6). Home visits by CompassionNet (case manager, physician, nurse) ranged from 1 to 121 (median 24). A goals of care discussion was documented for 29 children (81%), occurring a median of 16 days before death (range 0-118). Sixteen children died at home (44%); 20 died in the hospital (56%). Of the 16 families with a documented preference for location of death, 14 children died in this location (88%). Thirty-two families (89%) had bereavement support through CompassionNet. Conclusions: Children who die of complex chronic conditions spend the majority of their last 6 months of life at home. Community-based PPC can contribute substantially to their care and comfort.