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[Intractable neonatal heart diseases: a controversy].
1Service de cardiologie pédiatrique, hôpital Necker-Enfants malades, 149, rue de Sèvres, 75743 Paris, France. jean.kachaner@nck.ap-hop-paris.fr
Summary
Intractable congenital heart disease presents difficult choices for parents, including heart transplantation, palliative care, or pregnancy termination. Ethical considerations and objective information are crucial for parental decision-making.
Area of Science:
- Pediatric Cardiology
- Medical Ethics
- Fetal Medicine
Context:
- Intractable congenital heart disease necessitates complex interventions like Fontan-type circulation or heart transplantation.
- Prenatal diagnosis often leads to termination due to the severe nature and poor long-term outcomes of these conditions.
- Postnatal management presents a critical ethical dilemma between aggressive treatment and abstention.
Purpose:
- To explore the ethical challenges and decision-making processes for parents of infants with intractable congenital heart disease.
- To highlight the importance of objective information delivery in navigating complex treatment options.
- To examine the influence of socio-cultural factors on parental understanding and acceptance of medical information.
Summary:
- Intractable congenital heart disease involves conditions requiring heart transplantation or palliative Fontan-type circulation, both with significant risks.
- The decision-making process postnatally is ethically complex, involving treatment versus abstention.
- Hypoplastic left heart syndrome serves as a key example of these challenges, underscoring the difficulty in delivering objective information.
Impact:
- Informs ethical guidelines for counseling families with fetuses diagnosed with severe congenital heart defects.
- Emphasizes the need for improved communication strategies in pediatric cardiology.
- Contributes to a better understanding of parental decision-making in the context of life-limiting fetal conditions.