Would an opt-out system increase organ donations? Experts say Quebec has work to do first

In 2021, Nova Scotia became the first jurisdiction in North America to introduce a policy automatically designating all adults as organ donors upon death, unless they had opted out of the program when they were alive. 

The idea is called presumed consent, and four years after its implementation in Nova Scotia, the law has led to a significant surge in organ donations.

"It's been incredibly successful," said Dr. Stephen Beed, medical director of Nova Scotia's organ and tissue donation program, in an interview with CBC News.

"We have just about doubled our donation rate and we expect to have somewhere in the 35, maybe even approaching 40 donors per million rate at a time when most of Canada would be in the high teens or the low 20s." 

New Brunswick also moved to adopt a presumed consent policy in 2023, known as Avery's Law, which is expected to be implemented in 2025. 

Despite other provinces moving forward with this policy that has proven successful, Quebec has repeatedly been told it isn't ready to take that step. 

This week, an all-party committee at the National Assembly recommended that Quebec shelve the idea as the province prepares to table a new bill to facilitate the organ donation process.

"There are really base elements that we need to improve [before having] that discussion about presumed consent," said Catherine Blouin, a committee member and the parliamentary assistant to the health minister.

Experts agree.

While presumed consent may seem like a straightforward solution to save more lives, experts say its absence isn't what's hindering Quebec's organ donation efforts. Rather, it's the lack of key measures the province must implement that would make the policy worth adopting.

Success not attributed to consent reform

Beed says while presumed consent is what made headlines, he attributes little of Nova Scotia's success in increasing organ donation rates to the policy itself.

He says often overlooked is the fact that the province's outdated organ donation program was rebuilt "from the bottom up" when the legislation was passed in order to make it effective. 

"It's that system change that has dramatically increased our donation more so than a particular component of the law," Beed said.

He said the revamp included more training for front-line health-care workers, better communication with hospital administrators and a new database to track donor status.

"I don't think that our success has been influenced by the actual consent process very much at all, except that it was a clear message to our population from the government and from the health-care community that donation is a very good thing," Beed said. 

He said a law that changes the consent process but doesn't address those other issues "isn't really addressing the big problem." 

Transplant Québec CEO Martine Bouchard also says presumed consent does not have a direct correlation with an increase in donations because families are still allowed to veto a decision under the policy. 

"The family can still say, 'No, I don't agree with this,' and we wouldn't go forward because we haven't addressed the root causes of why families are saying no," she said. 

Quebec's big problems

Quebec's College of Physicians (CMQ) has maintained the same tune since January when it said that presumed consent "is not a panacea for increasing the number of organ donations and transplants in Quebec." 

It said measures must first be put in place to improve the process in the province, such as staff training, better organization and public information in order to entice people to become donors. 

In 2023, Quebec's donation rate was 23 deceased donors per million people. As of Dec. 31 last year, 853 people were waiting for an organ donation in Quebec.

"Quebec is not where it should be in terms of organ donation," said André Fortin, health care critic for the Official Opposition and member of the health committee at the National Assembly.

"We are not the leaders that we would expect and want our province to be in terms of the number of organ donations, in terms of our way of doing things."

His committee identified several issues with Quebec's organ donation process, including inconsistent procedures for identifying and referring potential donors, insufficient training on organ donation for front-line staff and limited public awareness.

Key recommendations in the committee's Oct. 22 report include creating a centralized register for consent status and implementing a framework law, which would provide for clear protocols for identifying and referring potential donors in all Quebec hospital centres.

The committee is also advising the province to designate a single organization to oversee the organ donation and transplant process in the province.

Transplant Québec is hoping to be tapped for that role.

Introducing presumed consent the right way

Fortin proposed presumed consent be put in place at the end of a two-year period with broad societal discussion and the implementation of all the changes suggested by the committee. 

"I think it's something that can be done if the population is properly informed and consulted, just like Nova Scotia did," he said. 

Should Quebec get to that point, Beed stresses the importance of implementing the policy the right way. For Nova Scotia, that meant pre-emptively addressing criticism by creating an opt-out registry, allowing people to make their choice known. 

"So that potential groundswell of negativity, it never got any traction at all. It was a blip, occasional sort of blog post or something, but the overwhelming perception from the public was absolutely supportive," Beed said. 

He also said the policy ensures family members can still veto an organ donation, saying the obligation is to support families so they can make the best decision on their worst day. 

"Those two things that could have completely torpedoed our program … those are things that we strategically, specifically integrated into the new model," he said.