Donor Family and Recipient Anonymity: Time for Change

Abstract

Purpose Policies and procedures exist in many jurisdictions regarding ‘anonymity’. These prohibit communication between transplant recipients and donor families. Social media may enable identification of donor families/recipients resulting in unsupervised communication and exchange of information. We have previously reported that heart transplant recipients want to connect with their donor families. The purpose of this study was to ask heart donor families what they thought about current practices around anonymity. Methods This was a phenomenologically informed audiovisual qualitative study. Inclusion criteria: ability to provide informed consent, having consented to heart donation, between 1 and 10 years after consent to donation, ability to communicate their experiences with clarity. Semi-structured open ended interviews were conducted in their homes, by an experienced qualitative interviewer. Interviews were audio/video-taped to capture voice and body language and were transcribed verbatim. Data collected also included personal artifacts (e.g. photos, letters) and field notes. Analysis involved coding language, bodily gestures, volume and tone in keeping with our phenomenologically informed visual method. Results Mean time since donation was 61.7 months (± 31.01; range 15-115 months). 22 donor families (40 participants) were interviewed from across Canada (27% Alberta, 32% Ontario & 41% B.C). Mean interview duration was 72 minutes (range 19-149). Four key themes emerged relating to anonymity: 21/22 families wanted to know the recipient(s), 19/22 wanted to meet the recipient(s). 17 had received letters from the recipient(s) and 12 had sent letters. Those who didn't write a letter frequently cited concerns around 3rd party vetting and redaction as a barrier. 21 of 22 donor families wanted to meet their recipients, and wanted to see policy change to enable this. Conclusion Donor families want to know and meet the recipients. This is in keeping with the views of heart transplant recipients who wish to know their donor families. We believe it is time to re-assess current policies on anonymity in transplantation. Donor families raised many possible solutions to how this may be accomplished.