Context. End-of-life care is an important yet underdeveloped component of pediatric hospital services.
Objectives. We sought 1) to describe the demographics of children who die in children’s hospitals, 2) to describe the prevalence of complex chronic conditions (CCCs) among these cases, and 3) to test the hypotheses that cases with a greater number of CCC diagnoses experience longer periods both of mechanical ventilation and of hospitalization before death.
Design and Methods. We identified all deaths of patients 0 to 24 years old that occurred in the 60 hospitals contributing discharge data to the National Association of Children’s Hospitals and Related Institutions data consortium for the years 1991, 1994, and 1997. We classified discharge diagnoses into 9 major categories of CCCs (cardiovascular, neuromuscular, malignancy, respiratory, renal, metabolic, gastrointestinal, hematologic/immunologic, and other congenital/genetic).
Results. Of the 13 761 deaths identified, 42% had been admitted between 0 and 28 days of life, 18% between 1 and 12 months, 25% between 1 and 9 years, and 15% between 10 and 24 years. Fifty-three percent were white, 20% were black, and 9% were Hispanic. The principal payer was listed as a governmental source for 42% and a private insurance company for 35%. Based on all the discharge diagnoses recorded for each case, 40% had no CCC diagnosis, 44% had diagnoses representing 1 major CCC category, 13% had diagnoses representing 2 CCC categories, and 4% had diagnoses representing 3 or more CCC categories. Among cases that had no CCC diagnoses, the principal diagnoses were related to prematurity and newborn disorders for 32% of these cases, injuries and poisoning for 26%, and an assortment of acute and infectious processes for the remaining 42%. Mechanical ventilation was provided to 66% of neonates, 40% of infants, 36% of children, and 36% of adolescents. Cases with CCCs were more likely than non-CCC cases to have been mechanically ventilated (52% vs 46%), and to have been ventilated longer (mean: 11.7 days for CCC cases vs 4.8 days for non-CCC cases). The median duration of hospitalization was 4 days, while the mean was 16.4 days. After adjustment for age, sex, year, and principal payer, compared with patients with no CCC diagnoses, those with 1 major CCC category had a significantly lower hazard of dying soon after admission (hazard ratio [HR]: 0.60; 95% confidence interval [CI]: 0.57–0.62), those with 2 CCC categories even lower (HR: 0.53; 95% CI: 0.50–0.57), and those with 3 or more CCC categories the lowest hazard of rapid death (HR: 0.51; 95% CI: 0.46–0.57). This trend of diminishing hazard of rapid death was significant across the 3 groups of children with 1 or more CCCs.
Conclusions. Children’s hospitals care for a substantial number of dying patients, who differ widely by age and medical conditions. Children who die in the hospital with CCCs are more likely to experience longer periods of mechanical ventilation and hospitalization before death.