Costs of Care and Location of Death in Community-Based Pediatric Palliative Care.

Background: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited. Objective: The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death. Design: A retrospective cohort analysis of administrative and electronic medical record data was employed. Setting/Subjects: Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included (N = 224). Measurements: Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record. Results: Sixty-six (29%) of the children were <1 year old at death; 80 (36%) were 1-9 years old, and 78 (35%) were 10-22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents (n = 89, 56%), whereas neuromuscular conditions (n = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1-9 years, and 46% for children of ages 10-22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050). Conclusions: Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability.

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.