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Updated: Sep 16, 2025
Implantation of Total Artificial Heart in Congenital Heart Disease
Published on: July 18, 2014
Ethical considerations in access to heart transplant for adults with congenital heart disease
Ryan D Byrne1,2, David W Bearl2
1Vanderbilt Heart and Vascular Institute, Division of Cardiology, Department of Medicine, Vanderbilt University Medical Center.
Insights
Adult congenital heart disease (ACHD) patients face transplant challenges. Addressing ethical issues is crucial for equitable heart transplantation access in this growing population.
Area of Science:
- Cardiology
- Transplantation Medicine
- Medical Ethics
Background:
- Heart failure is a common outcome for adult congenital heart disease (ACHD) patients.
- Heart transplantation is an increasingly utilized advanced therapy for end-stage ACHD.
- Ethical considerations are integral throughout the ACHD heart transplantation process.
Purpose of the Study:
- To review the ethical considerations in heart transplantation for adult congenital heart disease (ACHD) patients.
- To identify challenges and inequities in the ACHD heart transplant pathway.
- To explore opportunities for more equitable and standardized advanced cardiac therapies.
Main Methods:
- Literature review of ethical issues in ACHD heart transplantation.
- Analysis of barriers to transplant consideration and referral.
- Examination of short-term transplant morbidity and mortality in ACHD.
Main Results:
- Significant barriers exist for ACHD patients, including a shortage of ACHD cardiologists and inequities in recognizing end-stage disease.
- Vulnerable ACHD subgroups (e.g., those transitioning care, uninsured, with disabilities) face unique injustices.
- Increased short-term transplant risks necessitate careful ethical balancing of beneficence and nonmaleficence.
Conclusions:
- Global centers must optimize management of the rising ACHD transplantation cohort.
- Addressing ethical dilemmas can enhance accessibility, equity, and standardization of advanced cardiac therapies.
- A focus on ethical considerations is vital for improving outcomes in ACHD heart transplantation.
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.
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