Ethical Challenges in Independent Living Donor Advocacy

Abstract

The Independent Living Donor Advocate, who is required on the transplant team, advocates, promotes, and protects the interests of the donor. Previously described ethical challenges perceived by these advocates and the variability of their responses prompted further inquiry. Research Questions: How are ethical obligations perceived by ILDAs? What ethical principles do ILDAs identify as the basis of their decision making? What are the ethical challenges for ILDAs? Study Design: A descriptive cross-sectional survey was designed and administered via REDCap. Participants were recruited from the National Kidney Foundation Living Donor Advocate email list. Quantitative and qualitative data on their role, ethical decision making, and perceived ethical issues, by seriousness and frequency, were collected. Results: Thirty-four participants responded. Nonmaleficence was ranked as the primary ethical principle used in decision making. Participants rated obligations to protect higher than advocacy. Participants reported experiencing internal ethical conflict to protect over advocate for the donor. The most serious ethical challenge participants perceived for donors was their decisional capacity, followed by their emotional or psychological distress, which was also described as a frequent donor challenge experienced in their role. Discussion: The results of this survey validate previous descriptions that the advocate role is largely perceived as protective. Their independent nature as well as the inherent vulnerabilities of the potential living donor compels the continued mitigation of ethical challenges, to enhance advocacy and protection for the living donor.