Life and Death: A Multicenter Study Evaluating Cardiologists' Approach to Difficult Conversations with Fontan...

Area of Science:

• Cardiology
• Pediatric Cardiology
• Congenital Heart Disease

Background:

• Fontan patients require lifelong outpatient cardiology care.
• Aging Fontan population experiences increasing morbidities.
• Prognosis and goals of care discussions are essential but challenging.

Purpose of the Study:

• To evaluate cardiologists' attitudes towards risk counseling for Fontan patients and caregivers.
• To identify perceived barriers in discussing prognosis and adverse event risks.
• To inform strategies for facilitating difficult conversations in this population.

Main Methods:

• A novel survey was distributed to cardiologists caring for Fontan patients over 10 years old.
• Data collected included physician demographics, timing of risk discussions, and barriers.
• Barriers were thematically analyzed from narrative comments.

Main Results:

• 40 cardiologists surveyed regarding 155 Fontan patients (mean age 21.2 years).
• Most cardiologists felt discussions were timely and patients/families were ready.
• 42% reported significant barriers, predominantly patient-related (cognitive/mental health).
• Cardiologists preferred discussing risk with caregivers earlier (mean patient age 9) than patients (mean age 17).

Conclusions:

• Experienced cardiologists are willing to engage in difficult prognosis discussions.
• Patient-related factors represent the most significant barrier to effective risk counseling.
• Facilitating these conversations is critical for adolescent and young adult Fontan survivors.