RPD303 - Palliative Care and Termination in Fetal Cardiology: Association Between Institutional Services and Counseling

Key Message : Palliative care is considered by fetal cardiologists to be an essential component of counseling critical congenital heart disease, regardless of whether formal institutional services are available. This contrasts termination of pregnancy, which is less likely to be included in counseling as a pregnancy option if not offered at one's institution.

Abstract:

Background: Congenital heart defects (CHD) are the most common congenital anomaly with increasing prevalence and expectation of prenatal diagnosis (1). Fetal cardiologists are tasked with describing diagnoses and delivering comprehensive counseling, which may include interventional management, palliative care, and/or termination of pregnancy (2-4). Recent changes in state and federal laws have altered the availability of termination of pregnancy, potentially affecting counseling content (2,5). We describe the association between access to services and content of counseling discussion when a diagnosis of critical CHD is made.

Methods: An anonymous survey was distributed to fetal cardiologists. Respondents indicated characteristics of their counseling discussion for newly diagnosed hypoplastic left heart syndrome, including postnatal treatment, postnatal palliative care, prenatal palliative care involvement, and termination. Data was assessed using chi-square analysis on whether counseling content differed based on institutional services available.

Results: Of 138 respondents, 134 (97%) reporting palliative care as available at their institution. Among the four providers who reported that palliative care is not available, 3/4 (75%) indicated they would include it in counseling CHD. There was a statistically significant association between institutional access to termination and whether providers included termination as an option in counseling. This association remained significant across several subgroups, including providers practicing in academic or affiliated institutions, private institutions, urban and suburban settings, and both small/medium and large-sized practices. Providers at institutions where termination was not available were consistently less likely to include it in counseling of fetal cardiac anomalies.

Conclusion: Providers at institutions where termination is not available were less likely to include this option in counseling, in contrast with palliative care consultations which were consistently offered regardless of availability of that subspecialty service. This highlights the prioritization of palliative care by fetal cardiologists and how institutional services may alter patients’ access to comprehensive counseling.

References: 1. What are Congenital Heart Defects? NIH National Heart, Lung, and Blood Institute. Updated March 24, 2022. Accessed June 13, 2025. https://www.nhlbi.nih.gov/health/congenital-heart-defects#:~:text=Congenital%20heart%20defects%2C%20or%20diseases,births%20in%20the%20United%20States.

2. Arya B, Donofrio MT, Freud LR, et al. Implications of United States Supreme Court's ruling on Dobbs vs Jackson Women's Health Organization: perspective of physicians caring for critically ill fetuses and newborns. Ultrasound in Obstetrics & Gynecology. 2022;60(6):812-813. doi:https://doi.org/10.1002/uog.26107

3. Donofrio MT, Moon-Grady AJ, Hornberger LK, et al. Diagnosis and Treatment of Fetal Cardiac Disease: A Scientific Statement From the American Heart Association. Circulation. 2014;129(21):2183-2242. doi:doi:10.1161/01.cir.0000437597.44550.5d

4. Perinatal Palliative Care: ACOG COMMITTEE OPINION, Number 786. Obstetrics & Gynecology. 2019;134(3):e84-e89. doi:10.1097/aog.0000000000003425

5. Dobbs v. Jackson Women’s Health Organization (2022). National Constitution Center. Accessed June 13, 2025. https://constitutioncenter.org/the-constitution/supreme-court-case-library/dobbs-v-jackson-womens-health-organization