Findings from a National Survey of Living Donor Advocates

Abstract

The members of a consensus meeting on living donation recommended that all transplant centers performing living donor surgeries make available an independent living donor advocate (ILDA) whose “only focus should be on the best interest of the donor.” Since 2007, the governing bodies of transplant, the Center for Medicare and Medicaid Services (CMS) and the United Network for Organ Sharing (UNOS) have provided guidelines and bylaws with regard to the qualifications, professional boundaries, and practices of ILDAs. At this time, little is known about the sociodemographic backgrounds, professional boundaries, clinical practices, or ethical challenges faced by ILDAs. In 2012, our team conducted a survey to obtain a better understanding of the sociodemographic characteristics, selection and training, and clinical practices of ILDAs. All the US transplant centers performing living donor surgeries were contacted to identify the ILDA at their center. One hundred and twenty ILDAs (68 %) completed an anonymous survey. The results indicated considerable variability with regard to the sociodemographic characteristics of ILDAs, how the ILDA was selected and trained, and the ILDAs’ clinical practices, particularly ethical challenges encountered. The variability observed may result in differential selection of donors and could have a potential negative impact on the lives of both donors and transplant candidates. The variability in the qualifications and practice of ILDAs suggests a need for practice guidelines to standardize the practices of ILDAs and to increase consistency across transplant centers.