Opting out: A single-centre pilot study assessing the reasons for and the psychosocial impact of withdrawing from living kidney donor evaluation

Carrie Thiessen, Zainab Jaji, Michael Joyce, Paula Zimbrean, Peter Reese, Elisa J. Gordon, Sanjay Kulkarni*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

8 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)756-761
Number of pages6
JournalJournal of Medical Ethics
Volume43
Issue number11
DOIs
StatePublished - Nov 1 2017

ASJC Scopus subject areas

  • Health(social science)
  • Issues, ethics and legal aspects
  • Arts and Humanities (miscellaneous)
  • Health Policy

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