Ethical considerations in access to heart transplant for adults with congenital heart disease.

PURPOSE OF REVIEW: Heart failure is a final common pathway for many patients with adult congenital heart disease (ACHD). As such, ACHD heart transplantation is increasingly being considered and performed. Ethical considerations exist at each step in the transplantation process.

RECENT FINDINGS: ACHD patients face many challenges to successful heart transplantation. A dearth of ACHD cardiologists and many barriers to transplant consideration highlight inequities related to recognition of end-stage disease and timely referral for advanced therapies. Certain vulnerable ACHD sub-groups may more easily elude heart transplant consideration emphasizing injustices for patients such as those transitioning from pediatric to adult care, patients that are under- or uninsured, and those with chronic disabilities. Increased short-term transplant morbidity and mortality requires ACHD cardiologists and heart transplant teams to balance aspects of both beneficence and nonmaleficence when considering who, when, and where to transplant these complex patients.

SUMMARY: Given the rising incidence of ACHD transplantation, centers around the globe are tasked with how to best manage this patient cohort through successful heart transplantation. This review highlights multiple ethical issues in an effort to identify opportunities to provide more accessible, equitable, and standardized advanced cardiac therapies to this unique patient population.