Associations of Physician Perspectives, Personal Choices, and Counseling for Severe Congenital Heart Defects

OBJECTIVE: To assess whether physicians' perspectives of outcomes or personal choices are associated with prenatal counseling for termination of pregnancy (TOP) or perinatal hospice for severe congenital heart defects (CHDs). METHOD: Multicenter survey of pediatric cardiologists and congenital heart surgeons in the United States, 2016-2018. The survey measured perspectives of CHD outcomes, personal choices/considerations, and prenatal counseling for TOP or perinatal hospice. Bivariate comparisons estimated associations between outcome perspectives, personal choices, and counseling. RESULTS: Response rate was 77% (135/176); 47% (63/135) believed that single-ventricle portends good long-term quality of life or transplant-free survival. The majority (70%-90% depending on CHD type) would consider perinatal hospice for their own child, but a minority (2%-16% depending on CHD type) would choose perinatal hospice over TOP or postnatal intervention. Physicians who would consider TOP for themselves/their partner were more likely to counsel about TOP than physicians who would not consider TOP for themselves/their partner (99% vs. 67%, p < 0.001). There were no associations between institutional practice, outcome perspectives, personal consideration for hospice, and counseling practices. CONCLUSION: Physician perspectives of single-ventricle outcomes remain guarded but were not associated with counseling. However, personal choices/considerations are associated with counseling practices; therefore, considering personal beliefs is crucial to help families make fully informed decisions.