Nova Scotia on Monday became the first jurisdiction in North America to implement a policy of presumed consent for organ donation.
This means all people in the province are considered organ donors unless they opt out. Children under the age of 19 are exempt from the law.
Because it’s a first, Dr. Stephen Beed, the medical director of the Nova Scotia Organ and Tissue Donation Program, said donation programs across Canada will be following the province’s progress very closely.
According to the most recent figures compiled by Canadian Blood Services, 250 Canadians died while waiting for a transplant in 2019 — an increase from 223 in 2018. They also showed that Canada still has a shortage of organs, with 4,419 patients still waiting for transplants at the end of 2019.
The rest of Canada has an opt-in policy for organ donation — meaning individuals must sign up to be organ donors while they are alive. But, whether or not someone has registered as a donor, by common practice the next of kin still may have the final say on whether their organs can be donated.
“I really do think we’re going to be providing better end-of-life care for our potential donors and their families,” Beed said. “We will end up having more organs that can be transplanted for recipients and more tissues for those who are awaiting tissue transplants.”
Beed said the new opt-out system could see donations rise by as much as 30 to 50 per cent within five years.
The legislation isn’t without controversy.
Read more: Here’s how organ donation works in Canada
Previously, the Canadian Civil Liberties Association said the province should not be involved in making decisions on people’s bodies.
“There’s a strong sense that individuals have and should have autonomy over what happens to their body, and that the state or the province shouldn’t be involved,” Cara Zwibel, director of the Canadian Civil Liberties Association’s fundamental freedoms program, said.
Marika Warren, an assistant professor in the department of bioethics in the faculty of medicine at Dalhousie University, said on Sunday that she worries that the legislation will have a negative impact on vulnerable groups.
“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,” she wrote in the Conversation.
Dr. Faisal Siddiqui, a physician with Transplant Manitoba, believes that although Canada as a whole may just not be ready for the opt-out policy, it will be interesting to see how it works in Nova Scotia.
“It’s not new to the world to have an opt-out program, but people here in Canada will be interested to see how it plays out. It’s a choice made by the province, but it does not reflect all of Canada yet,” he said.
Although Nova Scotia is the first province to enact the legislation, other provinces have looked into it.
Manitoba, like other provinces, currently has an opt-in model under which people choose to be organ donors by signing up on a provincial website.
In 2017, former Manitoba MLA Stephen Fletcher put through a private bill that aimed to impose presumed consent for organ donations in the province. Fletcher proposed the idea as a way to cut long waiting lists for organ transplants.
However, Manitoba’s Conservative government voted against the bill, saying the province prefers to promote voluntary registration on the existing donor registry.
“We see the education side as the proper route to take,” Brandon West MLA Reg Helwer said in 2017. “There are implications for particular religions that want to see their loved ones buried whole. There’s all kinds of things that have to be covered off on this.”
At the time, former NDP MLA Andrew Swan said Fletcher’s bill warranted more examination, and suggested it could be passed into law with some changes following consultations with experts.
He said there were problems with presumed consent, because people may be unaware of how to opt out or English may be a second language.
“It may be people … who are not empowered, who may not know or who may not have the ability to truly consider this and make their own choices.”
Global News reached out to the province to see if the government has taken any recent steps towards presumed consent but did not hear back by the time of publication.
Siddiqui said that although Manitoba does not have presumed consent, the province has seen an increased number of people signing up as organ donors since its online registration launched in 2019.
“I personally think that our system in Manitoba has optimized the chance of people getting their wishes honoured at their end-of-life translation or move over to an online registry of intent to donate,” he said.
Siddiqui is not sure if Manitoba should go down the path of presumed consent.
“The biggest drawback is losing faith with people who trust the medical system to do their best for them. I think if we take away choice from people, it may not be what society wants. And so unless society is willing to give up that choice, we shouldn’t push down that path.”
In 2016, then-Saskatchewan premier Brad Wall said he wanted the province to implement presumed consent for organ donation.
Although the initiative was never put through, in 2019, then-health minister Jim Reiter said Saskatchewan may still “re-evaluate” and decide if presumed consent is “a path we want to go down.”
He also said Saskatchewan would be closely watching Nova Scotia and see how the program works for them.
“The intent all along is to move in that direction,” he added.
Reiter said the province needed to take other steps first, such as creating an organ donor registry and getting more doctors to encourage organ donation.
In September 2020, the province launched an online organ and tissue donor registry.
Global News reached out to the province to see if the government has taken any recent steps towards presumed consent.
A spokesperson said, “no decisions regarding the implementation of a deemed consent model have been made at this time.”
Other countries with presumed consent
Spain, Wales, Croatia, Chile, France and Portugal are just a few countries that have presumed consent systems.
Some nations have seen the benefits of the opt-out system, while others have not.
“There is evidence that supports the association between presumed consent and increased donation rates and that countries with opt-out laws have rates 25 to 30 per cent higher than those in countries requiring explicit consent,” according to the World Health Organization (WHO).
However, the WHO added that presumed consent appears to be only one of several influential factors. Other factors include potential donor availability, transplantation infrastructure, health-care spending, public attitudes and donor registries.
Spain has had presumed consent since 1979, although donation rates only started rising 10 years later when the country supplemented the system with more funding for transplant programs and more co-ordination between families of donors and transplant organizations.
The opt-out has also been a success in Wales, where it has been law since 2015.
Chile saw a decrease in donations after implementing its opt-out laws for a variety of reasons, including a lack of education and transplantation infrastructure as well as public attitudes.
Brazil also saw a decrease in organ donations after implementing the opt-out system and ended up reversing its policy.
To address persistently low organ donation rates, in 1998 the Brazilian government passed legislation on presumed consent organ donation. However, experts argued that at the time Brazil lacked the infrastructure for transplant co-ordination, including a national waiting list, and did not have an efficient system for individuals to opt out of being donors.
The policy led to a decrease in organ donations and Brazil eventually repealed the presumed consent legislation within a year and returned to an “opt-in” system.
Whether or not more Canadian provinces will follow Nova Scotia’s lead remains to be seen.
According to Canadian Blood Services, it is “closely” observing the outcomes of Nova Scotia’s organ donor changes.
“Overall, evidence indicates the consent model is only one component of a successful donation system,” the organization said in a statement. “We continue to track public opinion and will support other provinces who express interest in advancing deemed consent.”
How to register as a donor
Organ donation registration is done provincially so interested prospective donors can visit the CTA website or Organ Tissue Donation and select your province to complete the requisite forms. You can also sign up in person. People interested in becoming living donors should contact hospital transplant programs directly.
— With files from Global News’ Rebecca Joseph and The Canadian Press