Racial disparities in palliative care at end-of-life in children with advanced heart disease in the South

Racial disparities in palliative care at end-of-life in children with advanced heart disease in the South
Journal of Pediatrics; by Harrison Turner, Elizabeth S Davis, Isaac Martinez, Shambihavi Anshumani, Santiago Boresino, Susan Buckingham, Caroline Caudill, Chen Dai, Erika Mendoza, Katie M Moynihan, Lucas A Puttock, Raba Tefera, Smita Bhatia, Emily E Johnston; 8/24
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 specialty pediatric palliative care (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... Twenty-nine children (22%) received SPPC. Children ≤1 year at time of death and Black children were less likely to receive SPPC. SPPC was associated with death while receiving comfort-focused care, do not resuscitate orders, and hospice enrollment (no children without SPPC care were enrolled in hospice) but not medically intense EOL care (ICU admission, mechanical ventilation, hemodialysis, or CPR) or death outside the ICU. 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.