How Clinicians Prenatally Discuss Management Options and Outcomes for Congenital Heart Disease

A prenatal diagnosis of complex congenital heart disease (cCHD) introduces significant emotional, social, and financial stress for families. Uncertainty about the future is a central source of distress for parents, particularly surrounding management options and anticipated outcomes. Little is known about how fetal cardiologists present management options, address anticipated outcomes, and offer supportive services.

To examine how fetal cardiology clinicians discuss management options, anticipated outcomes, and supportive services with parents following a prenatal diagnosis of complex congenital heart disease (cCHD).

Initial fetal cardiology consultations were audio-recorded, transcribed, and analyzed qualitatively. Deductive coding focused on management options (e.g., invasive intervention, comfort care), anticipated outcomes (e.g., quality of life, mortality risk), and supportive services (e.g., social work, peer support, palliative care).

Five fetal cardiology clinicians from one tertiary care institution participated in 19 initial consultations. Management options discussed included invasive intervention and comfort care. Clinicians frequently described anticipated outcomes involving quality of life and mortality risk but rarely used those terms specifically. Families were most engaged during quality-of-life discussions. Palliative care as a consulting service was selectively introduced, often when the CHD diagnosis carried a higher risk of mortality. The service was frequently described as additional support.

Fetal cardiology consultations offer an important opportunity to support families navigating uncertainty following a prenatal diagnosis of CHD. Clinicians approached these conversations with empathy and a focus on long-term outcomes, though discussions about management options varied. There is an opportunity for increased presentation and integration of palliative care consultants as a longitudinal, family-centered resource, regardless of mortality risk, which may enhance supports available to families during this highly emotional period. Ongoing efforts to improve family-centered counseling and resources, such as access to perinatal palliative care, may help ensure families receive comprehensive, values-aligned information across the spectrum of care pathways.