Death and Cardiac Disease in Pediatric Hospitals and the Role of Subspecialty Palliative Care

To characterize end-of-life (EOL) experiences of children and adults with heart disease who die in pediatric hospitals.

This multicenter retrospective study included patients with heart disease who died within 31 US pediatric referral centers from July 1, 2021, to June 30, 2023. Data from terminal admissions were collected. Outcomes included high medical intensity EOL care, which was defined based on therapies used on day of death and active resuscitation (CPR) as the mode of death. Multivariable analyses, accounting for clustering by center, were performed to identify factors associated with outcomes, with adjusted odds ratios (aOR) and 95% CIs presented.

We reviewed 1044 decedents. Median age at admission was 67 days (25%, 75%: 0 d, 3.2 y). Subspecialty palliative care (SPC) followed 696 (68%) patients, with initial consultation a median 20 days before death (25%, 75%: 5, 69). High medical intensity care and CPR occurred at EOL in 654 (63%) and 172 (17%) patients, respectively. In multivariable analyses, greater odds of high medical intensity EOL care were observed for patients with cardiomyopathy or transplant diagnoses (aOR 1.70; 95% CI 1.06, 2.73) or cardiac surgery (aOR 3.33; 95% CI 2.39, 4.63), and lower odds were observed in patients with genetic abnormalities (aOR 0.68; 95% CI 0.51, 0.90) or SPC involvement (aOR 0.44; 95% CI 0.32, 0.60). Odds of CPR at EOL were lower with SPC involvement (aOR 0.34; 95% CI 0.24, 0.50), inversely associated with Child Opportunity Index (per 10-point increase: aOR 0.91; 95% CI 0.85, 0.97), and higher for patients of Black race (aOR 1.94; 95% CI 1.23, 3.06).

Patients with heart disease who die in US pediatric hospitals frequently experience high medical intensity care and CPR at EOL. Odds of these clinical outcomes were significantly lower if SPC is involved.