Marika Warren points out some ethically challenging aspects of Nova Scotia’s new presumed consent legislation for organ donation.
Nova Scotia is now the first province in Canada to have an opt-out system for organ donation. There has been surprisingly little concern raised over this, possibly due to short timelines around the passage of the bill. I offer these thoughts in the spirit of providing a note of caution as Nova Scotia proceeds to implement the legislation as well as some arguments to consider as other provinces explore similar legislation. Increasing the number of organs available for transplant is, of course, a laudable goal. The questions that concern me are around the cost of achieving that goal, especially for those who already shoulder more than their fair share of the burdens of social cooperation.
The legislation will switch the default around organ donor status, making all Nova Scotians donors unless they explicitly opt out. As is currently the practice, families will be consulted to confirm patients’ wishes regarding organ donation. Politicians and physicians alike have acknowledged the need for robust public education and dialogue to accompany the legislation in order to ensure that an individual’s decision to remain opted in is an informed choice.
However, information campaigns attempting to correct false beliefs about vaccine safety have been unsuccessful (as reflected in ongoing measles outbreaks). Similarly there remain misconceptions and uncertainties about the MAiD legislation in Canada, even among those who work within health care. The failure of campaigns to achieve widespread public awareness and understanding demonstrates that there are grounds for concern about the ability of public education initiatives to ensure that the action of remaining opted in reflects an informed choice.
If education strategies do not achieve their objectives, it is important to ask who is most likely to be affected by such failures. Groups that are already vulnerable and difficult to reach through conventional channels, including individuals whose living situations are precarious, newcomers, and individuals with lower educational attainment, are more likely to be unaware of the implications of inaction. This in turn increases their risk of becoming organ donors against their wishes.
Moreover, opt-out systems run a risk of increasing the perception, which can be entirely separate from the realities of medical practice, that some people will not receive potentially lifesaving treatment, especially those who are already underserved by the health care system. There is therefore legitimate concern regarding how misinformation about the presumed consent regime might affect the relationship of trust between patients and families and the health care system. Damage to trust in this realm has to count against the anticipated benefit of an increase in organs available for donation.
Another concern relates to those who do not have substitute decision makers, for whom the Public Trustee will presumably step in as the decision maker of last resort. It is unlikely that the Public Trustee will be able to justify refusing consent to donation in an opt-out system. This increases the risk that the safeguard of consultation with a substitute decision maker will fail to protect vulnerable or isolated individuals.
If there is going to be an increased risk of certain harms to vulnerable groups, then these need to be counterbalanced by reasonable expectations of significant benefits for them and for the population as a whole. There are, however, questions about how effective we might expect this law to be. Under the new Nova Scotia law families will still be able to decline on behalf of their loved ones, which is currently a significant barrier to increasing donation rates. This barrier is not addressed by the new legislation; the question regarding donation will be raised with greater frequency but it does not change the ability of families to overrule the patient’s decision, whether in an opt-in or opt-out system. Others have suggested that there are many variables in addition to consent processes that affect donation rates.
This legislation is a form of “nudging”, which helps individuals make choices they would endorse anyhow. Nudging might seem to be especially well suited to Nova Scotia, which already has Canada’s highest rate of opting in for organ donation. There are, however, other nudges that increase opt-in rates without the challenges identified above with an opt-out system, such as including a statement on organ donation forms that asks people to consider how they would feel if they or a loved one needed an organ and couldn’t get one, or contributing to funeral expenses.
Since it seems there are ways to achieve the objective of increased donation rates that do not pose additional threats to vulnerable groups, we have an obligation to pursue them first as the least restrictive means of meeting these goals. For Nova Scotia, it is imperative that the resources dedicated to informing and educating the public ensure that, for vulnerable members of society, the act of remaining opted-in is indeed an informed choice.
Marika Warren is an Assistant Professor in the Dalhousie University Department of Bioethics @marikadwarren