Purpose: To delineate rates of and reasons for opting out of living kidney donation, to determine if and how transplant centers offer alibis, to assess transplant professional attitudes regarding policy about alibis.

Methods: We interviewed independent living donor advocates and medical directors from US transplant centers with the highest volume living kidney donor (LKD) programs. The semi-structured interviews discussed rates of withdrawal from donation, reported reasons for opting out, and attitudes towards alibi policy. The data were analyzed using standard qualitative coding techniques in NVivo.

Results: 38 centers participated in the study (response rate 76%). No center systematically tracked rates of opting out. The most commonly reported reasons for opting 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 offer alibis to all LKDs while 21% do not and 5% were unsure. Most centers offered non-specific statements of ineligibility, whereas 18% provided alibis that sometimes include false or exaggerated medical information. Few participants personally offered an alibi or if they did, were unsure whether the alibi had been used or how it was received by the intended recipient. Most participants (78%) were unaware of UNOS/OPTN policy about alibis; one correctly stated that there was no such policy. 67% were in favor of introducing guidelines regarding the use of alibis, while 27% opposed, 2% unsure, and 4% believed alibis should be prohibited.

Discussion: Our study reveals a range of practices for use of and attitudes towards alibis. There is currently no UNOS/OPTN policy regarding alibi offers. Further work should identify best practices that help preserve 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 improve support for those who opt out.

CITATION INFORMATION: Iskander R., Kulkarni S., Thiessen C. Opting out and Offers of 'Alibis' for Potential Living Kidney Donors in the US Am J Transplant. 2017;17 (suppl 3).

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