Understanding Public Perspectives on Opt-Out Deceased Donor Transplant Policy

Dire scarcity of donor organs available for transplant means people with kidney failure in the United States and Canada may wait for years to receive a deceased donor kidney transplant, and many will be removed from the waitlist because of deteriorating health, or will die before having the opportunity to receive a transplant (1). The quandary of how to effectively and fairly distribute a scarce supply of deceased donor organs to thousands of people in need has generated decades of deliberation among ethicists, transplant clinicians, and the public. Many others have focused on strategies to bypass these ethically thorny issues of distributive justice by directly addressing the gap in supply and demand. In the 1960s, pressure to reduce the shortfall of deceased donor organs prompted a new definition of death by neurologic criteria (or brain death) (2). This shift in policy did succeed in increasing access to lifesaving transplants, but it also provoked a new set of complex ethical questions about personal and cultural understandings of what constitutes death (2). More recently, policy makers in multiple countries have promoted a shift from an affirmative consent–based system for deceased organ donation to a presumed consent or “opt-out” default to donate. This policy similarly promises to increase organ availability, but as of 2015, the Canadian Medical Association suggested caution in instituting such a policy “due to the absence of a societal debate on the policies of ‘presumed consent’” (3), and more recent policy statements cite ongoing controversy. Eliciting and understanding public perceptions and values around an opt-out policy for deceased donation will be critical to ethical and effective procedures.

In 2021, a presumed consent, or opt-out, policy went into effect in the Canadian province of Nova Scotia, and similar legislation is anticipated in Alberta. In this issue of CJASN, Fox and colleagues performed a qualitative content analysis of public comments in response to news articles about this new policy from January 2019 to July 2020, with a goal to understand comment writers’ perceptions of these policy changes (4). Specifically, the authors were interested in elucidating the perspective of comment writers on positive and negative implications of a presumed consent policy and key considerations in policy implementation. The authors searched four major Canadian national news outlets with key terms including “presumed consent,” “opt-in organ,” and “opt-out organ” and identified 35 relevant articles. From these articles, they extracted a total of 4357 public comments (1168 primary comments and 3189 subcomments). Of note, approximately half of the included articles (54%) expressed a positive opinion on a presumed consent policy and only two (6%) expressed negative opinions. About half of articles (19 [54%]) and the majority of individual comments (3538 [81%]) originated from Canadian Broadcasting Corporation (CBC) News outlets.

Three themes described what comment writers perceived to be positive implications of policy change, including that the new policy aligned with majority opinion, the policy would save lives and health care costs, and the presumed consent approach was an effective way to improve awareness and engage citizens. Comment writers also expressed concerns about the new bills. Some felt an opt-out policy removed the opportunity for donors to act altruistically and might violate rights, might influence how health care providers cared for people at the end of life or promote medical abuse or errors, and might trigger a slippery slope of loss of rights in other health care domains. Commenters highlighted the need to reinforce government transparency and communication about policies, clarify the process of how these policies would be implemented, and offer further empirical evidence for effectiveness. The work underlines the complexity of developing and implementing a deceased donor policy that extends far beyond the dichotomous decision of opt in or opt out.

This recent work by Fox and colleagues spotlights the value of qualitative methodology for investigating complex social processes and represents a creative application of publicly available data. Investigation into comments written in response to online news articles about presumed consent likely captures a large number of individual perspectives across the country. The work also reinforces the importance of reporting the context and surrounding factors that may shape the primary qualitative data—including the valence and content of the news articles to which commenters are responding—and integrating this into the interpretation of the findings. Further, those individuals who submit comments in response to online news articles likely represent a select subset of the Canadian population. Ultimately, no single set of qualitative findings will represent the breadth of factors shaping a complex personal or social issue. However, we may begin to develop a more comprehensive understanding through triangulation of these new findings with past and future qualitative work exploring this topic through other approaches, including individual interviews, focus groups, and field observation. Findings from qualitative work are, by the nature of the method, embedded in the specific context of the source data, and some results of this work by Fox and colleagues are likely specific to the Canadian cultural context. However, although these may manifest differently in different countries, broad insights such as the relevance of trust, altruism, and respect for end of life in a deceased donor policy may yet be helpful in beginning to understand experiences in other parts of the world.

The ethicist Norman Daniels describes a “fair process” of managing a scarce societal resource as including transparency about reasoning, rationale that stakeholders accept as relevant, and a procedure for appeals and revisions (5). The second stipulation is an empirical one. Stakeholders, including citizens, patients, family members, and communities, must agree with a societal policy around organ donation and accept that the underlying reasoning for this policy is appropriate. Perhaps consistent with clinical training focused on improving health outcomes and maximizing longevity, physicians and other clinicians tend to prioritize a goal to maximize aggregate population benefit of health care practices and processes. However, when developing policy with complex ethical implications, such as deceased donor organ procurement, it should not be assumed that values held within the health care profession reflect the complex views of the broader population. Lingering uncertainties about the deemed consent policy exposed by the work of Fox and colleagues signal a need for better elaboration of the process through public engagement.

Social scientists Renée Fox and Judith Swazey explored the central importance of framing organ donation as a freely given gift, to counterbalance strong cultural beliefs around bodily integrity (6). The opportunity for family members to associate the memory of their loved one with a profound act of generosity may also give some meaning to the otherwise incomprehensible loss of a young and healthy person. However, the conception of organ donation as a “supererogatory gift…beyond duty and claim” (7) may be undercut by a shift in policy and public perception of organ donation as a default. An intention to respect the values of a range of stakeholders—not only the majority—also prompts concerns for equity in an approach to deceased donation. The legitimacy of a presumed consent policy is grounded in an assumption that all members of the public are aware of and understand the policy and can opt out if preferred. Prior work suggests that members of minoritized racial groups and socioeconomically disadvantaged people may be more likely to decline deceased donation, but may also encounter greater barriers to education about the deceased donor system and options to opt out (8).

Public engagement in developing fair organ procurement and allocation processes is not only ethically obligatory but is also practically necessary to ensure continued buy-in for a system that ultimately depends on public participation. Although an opt-out policy may initially seem like a logical opportunity to increase rates of organ donation, evidence of efficacy is equivocal (9). Several European countries with opt-out policies boast some of the highest rates of donation, but this success may be more directly attributed to improved infrastructure and public education around donation (8). Indeed, opt-out policies risk negatively affecting rates of organ donation if the public perceives this process to threaten rights or if the public does not trust the health care community to ensure appropriate end-of-life care for organ donors. For example, organ donation rates dropped in the year after implementation of an opt-out system in Chile, and, in Brazil, similar legislation was repealed because of deteriorating public support (8,10). As Fox and colleagues emphasize, understanding public perspectives around deceased donation, applying these to shape policy, and ensuring ongoing transparency and responsiveness to the public is critical to effective implementation.

Ethical analysis in isolation may help us to grapple with whether it is more important to save lives through increased access to transplant versus respect individual autonomy of those who prefer not to participate in deceased donation but have not registered a refusal. In contrast, empirical research into public perspectives and needs holds the potential of directly addressing and minimizing the tension between these two priorities by identifying ways to improve transparency and education around the consent process and implementing accessible systems that make it easier to register refusal for those who prefer to opt out. Understanding public values beyond a simple preference for opt in or opt out offers opportunities to develop a more ethical and effective system of deceased donation (10).

Disclosures

The author has nothing to disclose.

Funding

This work is supported by the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health under award K23DK129777.

Author Contributions

C.R. Butler conceptualized the study, wrote the original draft, and reviewed and edited the manuscript.