In Canada, the demand for human organs for transplant far exceeds the available supply. In 2012, more than 4600 Canadians were waiting for organ transplants but only 540 people became deceased donors. As the population ages, there are growing calls for legal reform in this area.
One particularly thorny aspect of donation involves consent. Despite a chronic shortage of organs, doctors and donor groups rarely push back when families override the wishes of deceased loved ones who have consented to donate. Most Canadians believe such consent should take precedence over the wishes of next of kin and yet, in practice, that's not what happens.
According to Maeghan Toews, this is even more surprising when one examines the law surrounding consent. Toews is a Research Associate with the Health Law Institute. She's researching legal issues surrounding organ donation as part of the James Kreppner Fellowship, sponsored by Canadian Blood Services.
Q: What exactly is the status of law across Canada regarding consent for organ donation?
Almost every piece of organ donation legislation across Canada is clear that when an individual consents to organ donation, that consent is binding and full authority to proceed with organ procurement…. And yet in practice, a big problem is that families are given the opportunity - and routinely approached - to give consent for organ donation on behalf of their loved one, even in situations where that person has already consented.
Q: Meanwhile, we have doctors who often put the wishes of family, who are against donation, over the wishes of the deceased who consented before death. If the law is clear, why does that happen?
I think there may be some confusion amongst the medical community as to what exactly the law says… also I think a fear of liability, or litigation, might be a factor in some physicians' opinions or approaches to organ donation.
Q: Are doctors actually liable if they go against the family's wishes?
Doctors' exposure to liability would likely be very limited, as most pieces of organ donation legislation across the country provide protection against liability in civil actions for anything done in good faith. So as long as a doctor is acting under an honest belief that the donor provided valid consent, it is unlikely that the donor's family would succeed in bringing an action against the doctor.
Q: So is it then simply that the deceased is not in a position to sue, while the family is, and doctors are afraid of being sued?
I think that's definitely part of it. There is, in the case of organ donation, really no one to bring a claim on behalf of the deceased person. When it's their family that's opposed to organ donation they're unlikely to take up that cause, and the deceased obviously can't do it themselves.
Q: How, then, do you address the problem of doctors' standard practice being contrary to the wishes of the deceased-and to the law?
There's a need for education and training. Often times doctors aren't trained specifically as to how to have these conversations with families. One big strategy in the United States that has been successful, is reframing the conversations that happen with families. Instead of asking for permission, it's more about informing families of what their loved one wanted, and (saying) that this is what's going to happen.
Q: Does the law, in any way, back the position of families who veto consent given by the deceased?
Generally speaking, the only valid way for a family to override the consent of an individual is to show some sort of evidence of the individual having withdrawn their consent, or changed their mind. So if the family has actual information showing that this person changed their mind about being an organ donor prior to their death, that's a legally valid reason to override their consent. But that's the only valid legal means through which an individual's consent can be overridden.
Q: Is that why families who withdraw consent tend to make that decision? Or do they withdraw consent because they don't want to go through the pain of donation?
I'm not sure how often one comes up over the other. But this issue has been discussed as a sort of wedge issue, in that families can use it to advocate for their own beliefs rather than necessarily thinking about what the individual would have wanted.
The other thing to note is that although that is the only legally valid reason, as a matter of policy, the different organ procurement organizations…actually approach families to get their consent for donation. So in some respects, it doesn't even matter what the motivation is, when the policy is essentially contrary to what the law says.
Q: Why on earth would organ procurement organizations do that, given that they know better than anyone how important donor organs are?
I think there are a few different concerns. One of the primary ones is the idea that they don't want to add to the family's distress… There's also a concern that it would create publicity and reputational problems for the organ donation process in general if it were made known that organs were procured against the wishes of the family.
Q: Is there any evidence that either of these concerns is warranted?
Family distress is something that is difficult to measure, however, there are some studies indicating that families are more likely in the long run to regret decisions not to donate their loved one's organs. So this needs to be balanced against the immediate distress they might feel at having their wishes disregarded.
Also, survey evidence shows the vast majority of the Canadian public believes that an individual's consent to donate should be enforced regardless of his or her family's wishes. This provides reason to question the level of public outrage that would actually ensue if a story came out in which a donor's consent was enforced over the objections of family.