Practice guidelines , including uniform training of ILDAs , would greatly improve the consistency of practice across transplant centers, which is of particular importance if the ILDAs are involved in the selection process and/or have the ability to “veto” the surgery [2, 5]. The impact of a donor being “vetoed” from surgery would likely affect the life of the donor and recipient significantly, possibly resulting in the candidate’s death.

Practice guidelines may be defined as generally accepted, informal or formal, standardized or evidence-based techniques, methods, or processes [6]. The goals of developing practice guidelines for ILDAs are to set standards, delineate the division of labor, create boundaries, and educate patients and health care professionals regarding the practices of ILDA. Regardless of these benefits, practice guidelines also have disadvantages . For example, those spearheading the guidelines may bring biases from their own disciplines, and recommendations may not reflect the local or regional needs or circumstances of the center. Practice guidelines may also limit innovation and advances in the field and standardize practice based on the “average,” rather than “best” practice. Furthermore, practice guidelines can result in a more cumbersome and/or restrictive process and if not developed appropriately, may have legal implications. Table 24.1 provides a list of the areas that warrant further discussion and consensus by the transplant community to improve consistency across ILDA practices and to ensure appropriate service delivery.

At this time, the only qualifications to serve as an ILDA is “being knowledgeable about living organ donation, transplantation, medical ethics , and the informed consent process” [3, 4]. The definition of “knowledgeable” in areas can range from an individual who has no formal training in these areas (e.g., volunteer who has donated an organ) to a transplant surgeon who has years of specialized training in the area of transplantation. The ILDA training should include a basic foundation of knowledge in transplantation, organ donation, bioethics , and the guidelines of governing bodies such as UNOS and DHHS, and the informed consent process is recommended.

Both UNOS and DHHS have made recommendations with regard to professional boundaries. The recommendation is that the ILDA cannot be routinely involved in transplant candidate activities, so as to reduce potential bias while evaluating the living donor for surgery. However, only 54 % of the ILDAs at the time of the survey interpreted “independent” with reference to this professional boundary.

Furthermore, more than half of the ILDAs reported a dual role (e.g., social worker, nurse, or physician and ILDA). The advantages of a dual role may include that the ILDA may have greater breadth and depth of knowledge of the donor by performing a full psychosocial or medical evaluation and/or have more frequent contact with the donor, as with a nurse coordinator. As reflected in the findings of the survey, disadvantages may be the lack of differentiation between the two roles, particularly if the ILDA is involved in the selection process. It was apparent that some ILDAs may make recommendations for the donors’ suitability for surgery based on their non-ILDA role. Further clarification is recommended regarding the role of the ILDA in the selection process as well as the separation of roles when dual roles exist.

The lack of formal training of ILDAs was evidenced by the national survey of living donor advocates. The majority of ILDAs reported that they were trained by a member of the transplant team (48.5 %), which may be considered a conflict of interest but potentially the most relevant training with regard to the region and/or center practices. The remaining ILDAs reported various other methods of being trained, which included training themselves, or receiving little or no training [5]. This lack of consistent training translates to the significant variability in practices observed across centers. Ideally, a separate organization or subcommittee within an organization (e.g., UNOS and American Society Transplant Sugeons (ASTS) that is not connected to the ILDA’s own transplant center would provide training to ILDAs . The standards of training may include a certain number of hours and/or an examination and certification process to provide evidence of at least a minimum knowledge base. The content and duration of training as well as fiscal issues associated with training should be carefully considered. Web-based training may be optimal as the wide range of ILDA disciplines (e.g., nursing and clergy) makes annual meetings a potential venue for training and continuing education challenging. Continuing education for ILDAs is also recommended as the field of living donation evolves, as do the guidelines and requirements set forth by the DHHS and the UNOS. Similar to other professions, a certain number of continuing education credit hours could be required every 2 years to facilitate the ongoing education of ILDAs.