title: End-of-life care for children enrolled in a community-based pediatric palliative care program.
abstract: 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.
authors.affiliation: 1 University of Rochester Medical Center , Rochester, New York.
authors.forename: Lisa M
authors.initials: LM
authors.lastname: Niswander
authors.forename: Philene
authors.initials: P
authors.lastname: Cromwell
authors.forename: Jeanne
authors.initials: J
authors.lastname: Chirico
authors.forename: Alyssa
authors.initials: A
authors.lastname: Gupton
authors.forename: David N
authors.initials: DN
authors.lastname: Korones
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D019058:Community Networks / Q000458:organization & administration* / Q000639:trends; D006699:Home Care Services / Q000458:organization & administration* / Q000639:trends; D006801:Humans; D007223:Infant; D009518:New York; D019982:Organizational Case Studies; D010166:Palliative Care / Q000379:methods / Q000458:organization & administration* / Q000639:trends; D012189:Retrospective Studies; D013727:Terminal Care / Q000379:methods / Q000458:organization & administration* / Q000639:trends; D055815:Young Adult