Describing how children with life threatening complex chronic conditions die

Although many pediatric deaths are attributable to accidents and injuries, health-related mortality remains significant, especially for children with complex chronic conditions (CCCs). How do such children die? While numerous studies delineate patterns of care at end of life (EOL) for cancer and congenital heart disease, scant data exist about EOL care for other children with life threatening (LT)-CCCs. DeCourcey et al surveyed parents of children and young adults with non-cancer, non-cardiac LT-CCCs at Boston Children's Hospital and found the majority died in the hospital (62.7%) with over half (53.3%) dying in the intensive care unit.

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