End-of-Life Care in Pediatric and Congenital Heart Disease

Marked advances in the diagnosis and treatment of congenital heart disease (CHD) and other pediatric-onset cardiac conditions have significantly increased survival, such that the majority of patients are now expected to reach adulthood. However, childhood mortality will not completely disappear and there continues to be a subgroup of patients with complex heart disease who will die in childhood. In addition, CHD, particularly of moderate to great complexity, remains a chronic medical condition associated with premature mortality in adulthood. Patients with congenital and pediatric heart disease have end-of-life (EOL) care considerations unique from those of adult patients dying of acquired heart disease. Though EOL considerations certainly vary between neonates, children and adolescents, and adults, an emphasis on communication and interdisciplinary care is recommended in order to improve advance care planning and EOL care for this deserving group of patients.