Racial Disparities in Palliative Care at End-of-Life in Children with Advanced Heart Disease in the South

To examine specialty pediatric palliative care (SPPC) and end-of-life care for children with advanced heart disease in Alabama, including rates of and disparities in SPPC involvement.

We performed a retrospective study from electronic health records of children (≤21 years at death) who died with advanced heart disease at a single institution between 2012 and 2019 (n = 128). The main outcome was SPPC consult; we assessed clinical and sociodemographic factors associated with SPPC.

The median age at death was 6 months (IQR = 1-25 months) with 80 (63%) ≤1 year; 46% were Black and 45% non-Hispanic White. Seventy (55%) children had critical congenital heart disease, 45 (35%) non-critical congenital heart disease, and 13 (10%) acquired heart disease. Twenty-nine children (22%) received SPPC. Children ≤1 year at time of death and Black children were less likely to receive SPPC (aOR [95% CI]: 0.2 [0.1-0.6], reference >1 year; 0.2 [0.1-0.7], reference non-Hispanic White). SPPC was associated with death while receiving comfort-focused care (30.6 [4.5-210]), do not resuscitate orders (8.2 [2.1-31.3]), and hospice enrollment (no children without SPPC care were enrolled in hospice) but not medically intense end-of-life care (intensive care unit admission, mechanical ventilation, hemodialysis, or cardiopulmonary resuscitation) or death outside the intensive care unit.

Children dying with advanced heart disease in Alabama did not have routine SPPC involvement; infants and Black children had lower odds of SPPC. SPPC was associated with more comfort-focused care. Disparities in SPPC utilization for children with advanced heart disease need further examination.