Missed Opportunities: Single-Center Insights into Prenatal Cardiac Palliative Care

To determine whether prenatal palliative care (PC) utilization for patients with critical congenital heart disease (CCHD) at our institution is less than 10%, in spite of improvements in shared decision-making, communication, and family stress afforded by subspecialty PC consultation.

A retrospective study of prenatal CCHD diagnoses at a tertiary center from January 2020 to December 2023. Initial hospitalization characteristics, presence and timing of PC, and survival or mechanism of death were collected. Early PC was defined as occurring prenatally or more than 30 days prior to death. Clinical characteristics were compared between patients with early, late, or no PC consultation.

CCHD was diagnosed prenatally in 506 patients. Only 12% (n = 61) had a PC consultation, with 4 performed prenatally. Compared with those who received late or no PC, early PC consultation occurred more frequently for patients with genetic diagnoses (61% [n = 27] vs 35% [n = 6] vs 26% [n = 117], P < .001) or noncardiac congenital anomalies (61% [n = 27] vs 29% [n = 5] vs 35% [n = 154], P < .001). Of patients undergoing the highest complexity neonatal surgeries, 18% (n = 41) had subspecialty PC consultation. Overall, 12% (n = 60) of these patients died.

Patients with CCHD experience significant morbidity and mortality. Given the underutilization of subspecialty PC upon prenatal diagnosis of CCHD, implementation of routine PC consultation for high-risk patients could enhance PC involvement in this cohort.