RT Journal Article
SR Electronic
T1 Opting out: a single-centre pilot study assessing the reasons for and the psychosocial impact of withdrawing from living kidney donor evaluation
JF Journal of Medical Ethics
JO J Med Ethics
FD BMJ Publishing Group Ltd and Institute of Medical Ethics
SP 756
OP 761
DO 10.1136/medethics-2016-103512
VO 43
IS 11
A1 Carrie Thiessen
A1 Zainab Jaji
A1 Michael Joyce
A1 Paula Zimbrean
A1 Peter Reese
A1 Elisa J Gordon
A1 Sanjay Kulkarni
YR 2017
UL http://jme.bmj.com/content/43/11/756.abstract
AB Understanding why individuals opt out of living donation is crucial to enhancing protections for all living donors and to identify modifiable barriers to donation. We developed an ethical approach to conducting research on individuals who opted out of living kidney donation and applied it in a small-scale qualitative study at one US transplant centre. The seven study participants (64% response rate) had varied reasons for opting out, the most prominent of which was concern about the financial burden from lost wages during the postoperative period. Several reported feeling alone during their decision-making process. Although no participants used an alibi, a centre-provided statement of non-eligibility to donate, all believed that centres should offer alibis to help preserve donor autonomy. Given the complexity of participants' decisions and the emotions they experienced before and after deciding not to donate, we suggest approaches for independent living donor advocates to support this population. This study demonstrates that research on individuals who opt out of donation is feasible and yields valuable insight into methods to improve the evaluation experience for potential living donors.