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: (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.

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