Disparities in inpatient intensity of end-of-life care for complex chronic conditions

Academic Article


  • BACKGROUND: Children with complex chronic conditions (CCCs) require a disproportionate share of health care services and have high mortality rates, but little is known about their end-of-life care. METHODS: We performed a retrospective population-based analysis using a California State administrative database of children aged 1 to 21 years with a CCC who died of disease-related causes between 2000 and 2013. Rates of and sociodemographic and clinical factors associated with previously defined inpatient end-of-life intensity indicators were determined. The intensity indicators included the following: (1) hospital death, (2) receipt of a medically intense intervention within 30 days of death (ICU admission, cardiopulmonary resuscitation, hemodialysis, and/or intubation), and (3) having $2 intensity markers (including hospital death). RESULTS: There were 8654 children in the study population with a mean death age of 11.8 years (SD 6.8). The 3 most common CCC categories were neuromuscular (47%), malignancy (43%), and cardiovascular (42%). Sixty-six percent of the children died in the hospital, 36% had a medically intense intervention in the last 30 days of life, and 35% had $2 intensity markers. Living in a low-income neighborhood was associated with increased odds of hospital death, a medically intense intervention, and $2 intensity markers. Hispanic and “other” race and/or ethnicity were associated with hospital death and $2 intensity markers. Age 15 to 21 years was associated with hospital death, a medically intense intervention, and $2 intensity markers. CONCLUSIONS: Sociodemographic disparities in the intensity of end-of-life care for children with CCCs raise concerns about whether all children are receiving high-quality and goal-concordant end-of-life care.
  • Published In

  • Pediatrics  Journal
  • Digital Object Identifier (doi)

    Author List

  • Johnston EE; Bogetz J; Saynina O; Chamberlain LJ; Bhatia S; Sanders L
  • Volume

  • 143
  • Issue

  • 5