Abstract 4141265: Single Center Utilization of Prenatal Palliative Care in Patients with Critical Congenital Heart Disease: Missed Opportunities?

Background: Congenital heart disease (CHD) is a common congenital anomaly with lesions requiring intervention before initial hospital discharge defined as critical CHD (CCHD). Advances in prenatal detection, surgical, and post-operative care have improved early survival of patients with CCHD, yet long-term survival is limited. Fetal echocardiography has improved diagnosis and characterization of CCHD, and prenatal palliative care (PC) consult can improve shared decision making, communication, and parental stress of patients with life-limiting conditions. We hypothesized that the utilization of prenatal PC consults for patients with CCHD would be low (<10%). Methods: Descriptive patient series of prenatal CCHD diagnosess at Boston Children’s Hospital from January 2020-December 2023. CHD type, prenatal characteristics, mode of delivery, cardiac interventions, intubations, mechanical circulatory support, timing of PC consult, and survival or mechanism of death were collected and analyzed. Early PC consult was defined as prenatal or occurring more than 30 days prior to death. Mode of death and age at death were compared between early, late, and PC. Results: 603 patients had a prenatal diagnosis of CCHD. 23% (n=141) had single ventricle heart disease. 10% (n=62) had a PC consult, only 4.8% (n=3) were performed prenatally. Median age at PC consult was 143 days [31 wks gestation, 4 yrs]. 8% (n=49) died, with a median age at death of 57 days [IQR 13, 171]. The majority of patients (65%, n=31) died following discontinuation of life-sustaining treatment, 29% (n=14) died following treatment limitation (TL), and 17% (n=8) underwent unsuccessful resuscitation. Of the deceased patients, 63% (n=31) had a PC consult . Early PC consult occurred in 33% (n=15) of deceased patients. Early PC consult was significantly associated with an older age at death (255 +/- 180 days), in comparison to late or no PC consult (69 +/- 77 days, 88 +/- 196 days). Patients with early PC consults were less likely to die following active resuscitation or TL (20%, n=3) than those with late or no PC consult (57%, n=8, 33%, n=6 respectively, p < 0.05). Discussion/Conclusion: Patients with CCHD experience significant morbidity and mortality. Despite the known support that PC provides in decision making, establishing goals of care, and providing an extra layer of longitudinal support for families, early integration of PC upon prenatal diagnosis of CCHD is infrequently utilized at our institution.