Findings from a National Survey of Living Donor Advocates

Fig. 8.1

Percentage of ILDAs reporting how they were selected as an ILDA at their transplant center

The definition of the “independent” living donor advocate has been previously debated [6]. The findings of this survey suggested that ILDAs themselves may have many definitions regarding the term “independent” as it refers to their role as an ILDA. Figure 8.2 depicts the responses the ILDAs reported when queried about the definition of “independence” as it refers to their role as the ILDA .

Fig. 8.2

Percentage of ILDAs reporting their definition of “independent”

According to the governing bodies of Center for Medicare and Medicaid services (CMS) and UNOS , the role of the ILDA includes both “advocating” and “protecting” the donor. It is unclear at this time if an ILDA can necessarily perform both of these tasks. With regard to the ILDA advocating and protecting the donor, the ILDAs were queried about how they would proceed with regard to the following scenario:

How would you proceed if you felt that the donor having surgery would be detrimental to their physical or psychological well-being, but (1) this had been explained to the donor in detail and the donor understood the potential consequences; (2) the donor has been approved to proceed with surgery by the medical and psychosocial team members; and (3) the donor wants to proceed with surgery despite the potential risks?

We found that 29 % of ILDAs responded that they would document their concerns but would “approve” the donor for surgery (“advocate” for the donor). However, the majority of ILDAs reported that they would document their concerns and “not approve” the donor for surgery (51 %; “protect” the donor). The remaining ILDAs (20 %) had a variety of responses, including not being aware they were involved in the selection process. Please see chapter 22 for further discussion regarding the dilemma of advocating versus protecting.

Most would agree that the primary responsibilities of the ILDA are to confirm that the donor (1) is willing to donate; (2) is competent to donate; (3) is not under any undue pressure or coercion to donate; (4) is not being compensated to donate; and (5) understands the informed consent process including the medical, psychosocial, and financial risks of donation. Further, the ILDAs were queried about any issues they have had when evaluating the potential donors for competency. The ILDA may not formally assess the donor’s competency but may refer a donor for further neuropsychological or psychiatric evaluation for concerns regarding competency. The ILDAs described several examples in which they may decline a donor for surgery due to issues of competency and understanding of the information consent process (Table 8.1).

Table 8.1

Examples when the ILDA declined a donor for issues concerning competency to donate

A belief that risks did not apply to the donor because of God protecting him absolutely

A donor who had a ninth-grade education, unstable home life, although temporarily living with a girlfriend, wanted to donate to a friend. It was not clear if the donor was just trying to please his friend and if he totally understood informed consent process

Donor with an extensive alcohol abuse history and who had served a prison sentence. Poor historian, her stories did not match up between the team members. She did not seem to understand the process and we excluded her from donation

A donor who stated that he had not read any of the donation education information but he had signed and returned an agreement of understanding. My assessment was that I was not sure he could read and/or he lacked ability to understand the material. Patient was ruled out for medical reasons but I would have recommended neuropsychological assessment if he had been able to proceed with evaluation

We had a donor who was a relative and had suffered traumatic brain injury in a motor vehicle accident. We did the regular evaluation with a complete psychiatric evaluation as to cognition and competency. It was determined that this person was capable of making decision regarding surgery

I had one case where a potential donor was a foreign national visiting the recipient and my initial interview needed to be interpreted by the donor’s wife on the spot due to time being limited. I had no way of knowing if the translation was accurate or not. I did get the sense that the donor truly wanted to help his friend and understood there were some risks always involved with surgery

Donor was donating to his cousin, with whom he resided and who was providing financial support to the donor (who was not working at the time). Donor reported a history of special education courses in school. Donor did not appear to understand any of the medical aspects of surgery or the long-term implications of his decision. He had limited knowledge of his own personal finances (e.g., did not know if he had health insurance) and appeared generally cognitively impaired. Donation was advised against. The cousin later called and yelled at the coordinators, who subsequently requested a reevaluation. A more in-depth psychological and cognitive evaluation was completed, which revealed borderline intellectual functioning of the donor

I evaluated a donor under 20 years of age developmentally disabled man who wanted to donate a kidney to his sister. His family was in full support, and I believe that he was quite close to his sister. Although he was fairly high functioning in some ways, I did not fully believe that he understood all of the risks and benefits or that he could make a decision without the influence of his very involved family

Younger sibling was to donate to older, more successful sibling. Donor was on a very low developmental level and was not able to articulate or describe the risks that would be faced. This donor just kept repeating again and again, “I am not being pressured, I am not being paid.” The donor was not even able to understand the evaluation or results or the work-up process

A woman once called me and wanted to be a donor for her mother. During the entire telephone interview, the potential donor’s mother was in the background responding to questions. When I asked a question, the mother would answer and she would repeat that answer to me. The donor was on disability, but could not explain to me why donor was disabled. She said that it was from “when I was a little girl” but could not name the disorder. When I asked her who her MD was, she gave me a name and told me she took “little black and yellow pills”

Since the inception of this position in 2007, no formal training for ILDAs has existed. Many of the ILDAs , when queried as a part of this survey, stated that they had received training from a variety of sources and the type and duration of training varied greatly among ILDAs (Fig. 8.3).

Fig. 8.3

Percentage of ILDAs reporting how they were trained as an ILDA. Other ILDAs serve on ethics or selection committee, own research and writing, consult with other health care professionals, learned from patients and families

As the field of living donation and the guidelines and requirements set forth by the DHHS and UNOS continue to evolve, formal training and continuing education are recommended. Because of the diversity of professional backgrounds of ILDAs, it may be a challenge to identify a common forum (e.g., professional meeting) for training and continuing education. The development of written and/or web-based educational materials for ILDAs could be an approach that would facilitate consistency in knowledge and practices of ILDAs.

With regard to ILDA practices, approximately half of the ILDAs combined the ILDA evaluation with other responsibilities (e.g., psychosocial, medical, or nursing evaluation). The advantages of combining the ILDA evaluation include a more comprehensive understanding of the donor and family dynamics, which in turn can facilitate the decision-making process regarding the donors’ suitability for surgery. Disadvantages may include the ILDA’s role becoming diffuse and unable to “advocate” for the donor if she/he believes that there is a psychosocial, financial, or medical contraindication for surgery secondary to their other role.

The educational information the donor receives may be important in his or her decision to proceed with surgery and therefore materials developed by and vetted through health-care professionals should be provided to donors rather than information developed by individuals including ILDAs. The ILDAs who provided educational information to donors reported that only a small percentage (20 %) of materials were developed by UNOS or other national organizations related to transplantation and vetted through health-care professionals working in transplantation.

With regard to the ILDA’s practices , the majority of ILDAs reported attending multidisciplinary selection committee meetings in which donor, and sometimes transplant, candidates were discussed. The consensus statement published in 2000 suggested that the ILDA should have the power to “veto” the surgery [1]. It is clear from the findings of this study that a minority of ILDAs have the power to “veto” the surgery, while some ILDAs were not even aware that this was an option for them. If the ILDA is a part of the selection process, the ILDA may be obligated to disclose to the medical team(s), the reasons for recommending against surgery, both verbally and as part of the donor’s medical record. It is unlikely that the donor candidates are aware that information disclosed to the ILDA will be shared with the transplant team(s) and possibly with other health-care professionals who may have access to their medical records. If ILDAs are involved in the selection process, this should be included in the informed consent process so that the donors are aware that the information disclosed to the ILDA may be shared with other health-care professionals. If members of both the donor and candidate transplant teams are present at the selection committee meetings, and the ILDA discloses information discussed with the donor, there may be an increased risk of the donor’s confidentiality being breached to family members and/or recipients through members of the candidate team.

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