In January 2021, Nova Scotia will become the first place in Canada to have “deemed consent” for organ donation. Under this law, it will be assumed that people who don’t document their wishes about organ donation have consented to becoming organ donors. This is sometimes called an “opt-out” system, and is used in some European countries.
This is a significant departure from the usual practices around consent in health care in Canada. As a clinical ethicist with research interests in how we respond to inequity, I have concerns about whether potential negative effects on respect for personal choice can be justified.
The ethics of public health
The principle of using the least restrictive means in public health ethics means selecting the strategy that puts the fewest constraints on individual liberty. Justifying deemed consent under this principle would require evidence that it will increase the supply of donor organs, as well as evidence to prove that there is no way to achieve that increase without using deemed consent.
I argue here that the second requirement has not been met. If there are ways to increase organ donation without the risk of limiting individual rights, then the principle of least restrictive means guides us to pursue those strategies first.
Other strategies to increase organ donation include mandated choice, which requires people to actively opt in or opt out.
There are concerns that personal freedom will be negatively affected by the Nova Scotia law, as well as worries about who will be affected.
Here’s a fictional example: Ash, 37, arrived in Nova Scotia before the new organ donation law came into effect and doesn’t realize that the law changed. Ash has strong beliefs about not wanting to be an organ donor, but Ash has never discussed them with their partner or friends. Ash is involved in a collision and their injuries are serious. Because of deemed consent, they are identified as a candidate for organ donation. After consultation with Ash’s partner, donation proceeds.
The donation harms Ash because it goes against what Ash wanted to happen to their body after their death. This harm only occurred because deemed consent was in place. And individuals who do not have family or friends to speak on their behalf are at greater risk of their wishes not being respected when they have not expressed them directly.
In addition, deemed consent assumes that individuals know that they are living in a jurisdiction where they need to indicate their wish not to be a donor. This is very different from how we approach other health-care decisions, where clear and affirmative consent is required.
Groups that are harder to reach with health messaging — such as newcomers to Canada, those with precarious living situations or people with lower levels of education — will be at greater risk of not knowing how to ensure their organs are not donated against their wishes. And given the ongoing pandemic there are worries about the feasibility of ensuring that decisions around organ donation are informed.
It is not clear that these significant costs are absolutely necessary.
During the COVID-19 pandemic, the principle of least restrictive means has often come up in discussion of travel restrictions and widespread lockdowns. It is equally relevant when assessing policies aimed at increasing rates of organ donation.
In addition to bringing in deemed consent, Nova Scotia’s law increases resources for donation programs and improves efficiency of donation processes. These strategies are more aligned with the principle of least restrictive means than deemed consent is. A move to deemed consent could be more easily supported if attempts to improve processes had already been tried and had failed to increase organ donor registration.
Nudges and vetoes
If we were in a situation where evidence was limited or uncertain, there might be legitimate debate about whether or not the Nova Scotia law is using the least restrictive means. But this is not the case.
Research in Ontario indicates that registration rates can be significantly increased with the use of “nudges.” Putting the question, “How would you feel if you or a loved one needed a transplant and couldn’t get one?” on the top of donation forms affected behaviour. Nudging like this does not affect requirements for explicit consent. Other less restrictive options include mandated choice, which could require people to opt in or opt out whenever they renew their health card.
Less restrictive measures like this should be adopted before moving to deemed consent, especially in the absence of conclusive evidence that deemed consent systems are the only strategy that will adequately increase supply of donor organs.
Another significant barrier to organ donation is families’ ability to “veto” expressed decisions around donation. Concern has been raised that this would be worse under a deemed consent system. The argument is that there will be greater uncertainty about a person’s wishes and so it will be harder to show that vetoing organ donation is going against their wishes.
Respecting family vetoes (even when this goes against legislation) reflects the value of compassion for bereaved families. When deemed consent is being considered, these commitments need to be weighed against harm to respect for individual autonomy. To satisfy the principle of the least restrictive means, organ donation strategies should address family vetoes (and other similar barriers) before moving to options that carry a greater risk of limiting individual autonomy.
It is not evident from the evidence that a deemed consent organ donation system is the least restrictive means available to increase the supply of donor organs. We would first need to demonstrate that improving existing processes, the use of nudges, mandated choice, addressing family vetoes and strategies like advanced commitment or incentives cannot adequately increase rates of organ donation. Then, and only then, would a move to deemed consent be justified. Until such evidence is available the principle of the least restrictive means prompts us to make efforts to increase donation rates in ways that are more respectful of individual choice.
This article originally appeared in The Conversation