Family Veto in Organ Donation

The aim of this research program is to address multiple aspects critical to successful organ donation, including assessing public attitudes and opinions, establishing recommendations regarding how transplantation issues are framed in the popular press, enhancing public understanding of organ donation, and addressing public misconceptions that may undermine support for donation and transplantation.  The research highlighted below explores new modalities to address the issue of family veto, which are legally- and ethically-acceptable, with the aim of developing policy recommendations and practice guidelines in Canada.

MEDIA ANALYSIS: Family Veto in Organ Donation in Canada – Framing within English-language Newspaper Articles

Co-Investigators: M. Toews, T. Caulfield, L. Wright

Background: Because organ transplantation relies on public support for donation, an analysis of public discourse around organ donation is essential. We investigated the portrayal of family veto — when a family overrides the deceased person’s prior legally executed wishes to donate — in Canadian news media.

Methods: Using the Canadian Newsstream database, we identified articles published in English-language newspapers addressing family veto between 2000 and 2016. Guided by the theoretical perspectives of framing of media effects, we conducted a systematic content analysis of the articles to examine how the Canadian media framed family veto. An initial in-depth analysis of the data set in which themes and patterns were captured and recorded identified coding categories, including primary framing of family veto, prevalence, reasons, ethical or legal concerns and overall tone of the article. Two coders analyzed the data set to ensure intercoder reliability.

Results: A total of 133 relevant articles were identified. Family veto was framed predominantly as something that should not be allowed (81 articles [60.9%]) and as a reality that is little understood outside the transplantation community (45 [33.8%]). One-quarter of the articles (32 [24.1%]) highlighted ethical principles of autonomy and justice associated with family veto. Family veto was represented as a stumbling block in the present organ donation system, with most publications (107 [80.4%]) calling for change. There were differing interpretations of organ donation legislation, with 82 articles (61.6%) erroneously stating or suggesting that existing legislation permits family veto.

Interpretation: Family veto in organ donation was portrayed predominantly negatively. Many publications reflected a misunderstanding of the law concerning this issue. Although the framing of family veto highlighted important ethical and legal concerns as well as practice and policy considerations, research is needed to enhance the understanding of family veto in organ donation.

Understanding the Perspectives and Experiences of Organ and Tissue Donation Coordinators

Co-Investigators: L. Wright, S. Dhanani

Aim: To develop an understanding of the perspectives and experiences of Trillium Gift of Life Network (TGLN) Organ and Tissue Donation Coordinators who work with families/next-of-kin who decided to veto a deceased individual’s consent for organ donation. To accomplish this task, the following questions will guide this research:

  1. What are the experiences of TGLN Organ and Tissue Donation Coordinators who work with individuals who have decided to override a deceased individual’s consent for organ donation as their next-of-kin?
  2. What decision-making processes are associated with the next-of-kin’s decision to override consent for organ donation as understood by TGLN Organ and Tissue Donation Coordinators?

Methods: Semi-structured face-to-face focus groups will be held with 12-16 TGLN organ and tissue donation coordinators, using a phenomenological approach. Exploring the experiences of TGLN Organ and Tissue Donation Coordinators and understanding factors influencing the decision to override organ donation consent by families/next-of-kin will increase understanding of why these decisions are made and what underlying processes influence them.

Results: Pending. Findings will lay the groundwork for future research and policy exploring organ donation consent processes in Canada.