Dave Snow challenges “presumed consent” for deceased organ donation.
In late April, Nova Scotia’s Health Minister suggested that the government might hold a public consultation on changing the rules for organ donation following death. Currently, Nova Scotians must ‘opt in’ to the organ donor program by providing written consent, or oral consent in the presence of two witnesses.
The proposed reverse onus provision would presume consent, making organ donation following death the default standard for Nova Scotians. And, “presumably,” there would be provisions for written refusal so that prior to death Nova Scotians could ‘opt out’.
Why implement presumed consent for deceased organ donation? The Nova Scotia government views organ donation as a praiseworthy activity and a greater supply of deceased donors as a laudable goal. However, Nova Scotians are not signing donor cards in numbers sufficient to meet demand, and neither public awareness campaigns nor the creation of a government-sponsored agency have brought these numbers up to desired levels. In 2012, 230 Canadians died waiting for transplantation. Evidence suggests that presumed consent will increase the comparatively low deceased donor rate, which will decrease the number of people dying on wait lists.
Presumed consent “assumes that everyone wants to donate unless they’ve registered their objections otherwise.” In principle, this seems odd. For most issues that concern our bodily integrity, we would scoff at the idea that because we would likely consent to some intervention, there is no need to actually elicit our prior consent (or, for deceased organ donation, to solicit consent from a spouse, adult children, or other legitimate decision-maker). So why is the idea of presumed consent appealing with organ donation?
The answer to this question is that presumed consent easily fits under the rubric of soft paternalism, which is currently trendy in policymaking circles. Popularized by economists Richard Thaler and Cass Sunstein in their book Nudge, soft paternalism relies heavily on reverse onuses and opt-outs. Soft paternalism empowers governments to make initial decisions on our behalf, from which we can subsequently dissent.
Policy prescriptions range from the small and uncontroversial (placing fruit before cake in cafeteria lines) to the more substantial and onerous (default opt-ins for employee retirement and drug plans). In these instances, soft paternalism’s allure is that it preserves the element of choice, but influences those choices in a way that encourages us to be better off. The key assumption is that governments know what is best for us, but we can, if we so choose, act against our best interests and reject the government’s initial choice.
Presumed consent for deceased organ donation, however, is one case where the end does not justify soft-paternalist means. The decision between becoming a deceased organ donor or not is qualitatively different from the decision between eating fruit or sugary desserts. For example, there are significant religious, ethical, and philosophical objections to deceased organ donation, not to mention considerable uncertainty regarding what constitutes death. Moreover, the fact that Canadians have expressed high support for organ donation and transplantation in principle is immaterial. There is a big difference between endorsing deceased organ donation in the abstract and actually signing one’s name on a donor card. Agreeing to become an organ donor following death is intensely personal.
Our government is unwilling to compel organ donation following death and so, instead, has positioned presumed consent—soft paternalism par excellence—as a middle-of-the-road strategy to recruiting more donors. However, deceased organ donation is one of those instances where the middle of the road is a dangerous place to be.
At the end of the day, soft paternalism is still paternalism. The underlying assumption in moving to presumed consent is that people won’t question or contest the status quo. If the government takes the initial decision out of its citizens’ hands, its intention won’t be to “nudge” Nova Scotians into having second thoughts. Instead, its hope will be that Nova Scotians won’t think much about organ donation, and so won’t exercise their choice to opt out, thereby increasing the number of organs available for transplantation.
While there is good reason to want to increase the number of available organs, there is better reason to respect the decision of those who choose not to donate. When it comes to organ donation, the government’s preferences should not come before the preferences of its citizens. If there is a public consultation on presumed consent to organ donation, Nova Scotians should understand what’s at stake.
Dave Snow is a Postdoctoral Fellow at Novel Tech Ethics at Dalhousie University.
I agree wholeheartedly (unless the government has its way; pun intended!) with Dave Snow’s view that the presumed consent proposal is inappropriately paternalistic regarding an overwhelmingly important and personal decision about one’s most precious possession: one’s body. At a time when Canada’s healthcare system long ago accepted the legal requirement for explicit, prior, informed consent as an expression of autonomy in all other healthcare procedures, organ donation stands out as the one procedure where a genuine informing process (regarding risks them as well as benefits to others) is basically absent.
Standing in such sharp contrast to all the information given in all other medical procedures, this failure to inform in organ donation may well make many prospective donors very nervous, thereby contributing to Canada’s observed low organ donation rates. It’s like we’re telling people to jump into a sort of information ‘black hole’ that no-one comes back from to say that it all went just fine, but then we’re wondering why many don’t make that leap.
Presumed consent only exacerbates the picture: effectively commodifying or instrumentalizing citizens as presumptive organ sources for others’ benefit, unless they go to lengths to inform themselves and opt out. This is not the way to go. Dave is right, by taking the decision out of the hands of each individual (even temporarily, until they opt out), the government aims to send a strong message normalizing, and thus encouraging, organ donation. But this semi-dictatorial approach does not address what’s wrong with organ donation and could well backfire, creating resentment. What we actually need is a decisive case in favour of presumed consent, not against it, and at present we don’t have one that stands up to scrutiny.
There are two possible violations of autonomy with respect to opt-in/opt-out posthumous organ donation. One possibility is that an individual wished to be an organ donor, but because she did not (for some reason) opt-in and register that wish, her organs are never harvested and donated. In that case, there is an unintentional disregard of her autonomous desire regarding the disposition of her posthomous remains. Quite possibly, this happens very often, given how many people claim to support organ donation. The other possibility is that some individual did NOT wish his organs donated, but because he neglected to opt-out, upon his death, his organs were harvested and donated. Again, a violation of his autonomuos desires.
Let us assume (safely, I should think) that those who oppose organ donation are in the minority, and have very good, very strong reasons for opposing it, such that, so long as they are informed that they must opt out of donation, they will be very motivated to opt out. Much more motivated than are the many would-be organ donors who neglect to opt-in under the current system. In that scenario, although we will continue to make mistakes (by taking organs from those who did not wish to be posthumous donors), we will make far fewer mistakes than we make under the existing opt-in system. Thus, the opt-out system would result in fewer violations of autonomy than the opt-in system. I see no reason to think that one type of violation is more serious than the other (given that the donors are dead), so the opt-out system turns out to be preferable, all things considered.
Many people are unaware that you can register your wishes to NOT be an organ donor, at least this is true in British Columbia. I do not have a personal opinion on the proposed presumed consent law, but such laws would not be needed if citizens were to take the initiative to register their decision either way. Many people still believe that expressing their wish to be/not be an organ donor in their will or having a sticker on their driver’s license (the old system) will be sufficient, which is not the case. A confidential online system seems to be the best way to record wishes regarding organ donation.
Whatever the other merits of Snow’s argument, I cannot understand why he thinks that a reverse onus is an instance of ‘soft paternalism’. Paternalism requires that agents’ choices be influenced, manipulated, or outright coerced for their own good. Deceased organ donation can hardly be in the interest of the donor. It is an instance of other-regarding, not self-regarding, choice.
Snow is right about two things. First, reversing the onus is less protective of individual autonomy, since it requires that agents do something in order to avoid being posthumous donors. Second, since it involves our own body parts, there is more at stake for us in the decision whether to donate than in the decision whether to choose fruit rather than cake at the cafeteria. But Snow ignores the fact that the stakes are also higher on the other (recipient) side, where it will often literally be a matter of life and death.
Until this factor is given its due weight, we won’t have a decisive case against presumed consent.