Purpose: 1) To delineate rates of and reasons for opting out of living kidney donation in the US. 2) To determine if and how transplant centers offer alibis to individuals who opt out. 3) To assess transplant professional attitudes regarding policy about offers of alibis.
Methods: We interviewed independent living donor advocates (ILDAs) and medical program directors from US transplant centers with the highest volume living kidney donor (LKD) programs. The semi-structured interviews inquired about rates of withdrawal from donation for non-medical reasons; reasons potential donors report for opting out; personal experiences interacting with individuals who opted out; and attitudes towards alibi policy. The data were analyzed using standard qualitative coding techniques in NVivo.
Results: 38 centers participated in the study (76% response rate). No transplant center systematically tracked rates of opting out. The most commonly reported reasons for LKDs to opt out included: fear of impact on health or surgical risks (50%), pressure or coercion from family or the intended recipient (42%) financial problems (34%), change in life circumstances (32%), increased awareness of donation's complexities (32%), and other care-taking responsibilities (29%). 74% of centers sometimes or always offered alibis to all potential donors while 21% of centers do not and 5% were unsure. Most centers offered non-specific statements of ineligibility to donate, whereas 18% of occasionally provided alibis included false or exaggerated medical information. Few participants had ever personally offered an alibi. Those who had been involved rarely knew if the alibi had been used or how it had been received by the intended recipient. Most centers do not recontact those who opted out, though a few ILDAs had followed up with individuals who they thought were at especially high risk for emotional distress. The majority (78%) of participants were unaware of any UNOS/OPTN policy about alibis; one individual (2%) correctly stated that there was no such UNOS/OPTN policy. Two-thirds (67%) were in favor of introducing either policies or guidelines regarding the use of alibis, while 27% opposed, 2% unsure, and 4% who believed that alibis should be prohibited.
Discussion: We found that most US transplant centers do not know much about the population of individuals who opt out of living kidney donation. Our study reveals a range of practices for use of and attitudes regarding alibis. At present, there is no OPTN/OPTN policy regarding alibi offers for LKDs who opt out. Further work should be done to identify best practices that help preserve potential LKD autonomy and welfare.
Conclusion: Our results highlight the need for further study of individuals who opt out of living kidney donation. They also suggest avenues for transplant centers and policy makers to develop guidance to help improve support for those who opt out.