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

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

Tredway H; Moynihan K; Bloomhardt H; Snaman J; Purol N; Hoganson D; Ronai C

Circulation

2024

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%. <br/>Method(s): Descriptive patient series of prenatal CCHD diagnosess at Boston Children's Hospital from January 2020December 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. <br/>Result(s): 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.

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