Alberta could become the second province to create a system that puts the onus on its citizens to opt out of organ donation, as part of a shift aimed at increasing the number of life-saving transplants.
But experts warn such a system could backfire if the government does not expand the plan to include widespread education and beef up parts of the health-care system.
Matt Jones, a backbench member of the United Conservative Party, tabled a private member’s bill earlier this month that would usher in the opt-out program. The bill passed through a committee but is still winding its way through the legislative process.
Legislators in Prince Edward Island and Quebec are also considering opt-out programs. Nova Scotia earlier this year passed legislation that would make all residents potential donors unless they register their wishes with the province.
The need for organ and tissue transplants outpaces availability in Canada and around the globe. The vast majority of Canadians support organ donation, but the rate of donation is significantly lower. While it seems logical that opt-out systems, also referred to as presumed consent, would address this gap, advocates argue it must be accompanied by a culture shift. The public, for example, must trust that medical teams will not cease treatment to harvest organs. Further, it is not clear whether presumed consent will, indeed, boost donation rates.
Toby and Bernie Boulet became advocates of organ donation after their son was killed in the Humboldt Broncos bus crash in 2018. Their son, Logan, had previously told his dad he wanted to be an organ donor, and his decision saved the lives of others. The elder Mr. Boulet believes people need to think about organ donations the way his son did.
“That conversation has to be about living, not about death,” Mr. Boulet said. “He was talking about living when he was telling me he wanted to donate his organs.”
Stephen Beed, the medical director for Nova Scotia’s organ and tissue donation program, was in Saskatoon’s Royal University Hospital at the time of the Broncos collision. He worked with the Boulet family to respect Logan Boulet’s wishes. Dr. Beed helped design Nova Scotia’s presumed-consent system, but only after rejecting the idea when the government initially brought it to him in 2014.
“If all you do is change the law and nothing else, it is unlikely to change anything,” he said. Instead, presumed-consent legislation must be part of a broader overhaul of donation programs, Dr. Beed said.
Doctors and nurses need to be better trained to identify potential donors; the number of donor co-ordinators, the professionals who work with families as someone nears death, must increase; and the public needs to be comfortable with idea of organ and tissue donations, Dr. Beed said. Governments must also invest in research, such as how to improve transplants and extend the amount of time organs are viable after retrieval.
Nova Scotia, he said, has not proclaimed its presumed-consent law because it needs more time to fill in these gaps. Dr. Beed expects Nova Scotia’s opt-out program to kick in next October.
Mr. Jones, the UCP member of the legislature who proposed Alberta adopt presumed consent, did not return requests for comment. The government will be “monitoring developments” in Nova Scotia after that province enacts its presumed-consent legislation, according to Tyler Shandro, Alberta’s Health Minister.
“There are currently no plans to introduce it here but I’m open to considering any approach that could make more donor organs available to people waiting for them,” Mr. Shandro said in a statement.
Opt-out consent programs will not result in a plethora of available organs because the opportunity to donate is rare. Eligible donors must die under specific circumstances, usually owing to a severe brain injury – without a chance of recovery – and the patient must die after being taken off life support.
There were about 762 deceased organ donors in Canada in 2018, according to the Canadian Institute for Health Information (CIHI). In total, the organs retrieved from these donors resulted in roughly 2,271 transplants. By way of comparison, there were roughly 555 transplants in 2018 tied to living donors, the CIHI said.
Meanwhile, there were 4,492 people waiting for single or combination transplants; and another 643 people in Canada died while waiting for a transplant or withdrew from the waiting list, the CIHI said.
Timothy Caulfield, a professor in the University of Alberta’s law department and its School of Public Health, said he believes Albertans would accept an opt-out system, so long as it was well understood. Alberta, for example, must make it clear to people that, in some circumstances, they may be able to stop a family member’s organs from being donated. However, Prof. Caulfield worries that jurisdictions that adopt presumed consent will not solve the organ shortage problem.
“I don’t want policy-makers to think that way, I don’t want health-care workers to think that way,” he said. “It has to be part of a broader system approach.”
It is unclear whether opt-out programs will translate into more people donating organs, according to Andreas Kramer, who is medical director of the southern Alberta organ and tissue donation agency. Canada, he said, should steer away from comparing its donation rates with other countries.
Spain is frequently cited as a success story for presumed consent, but cultural and ethical differences affect the data. Health-care practitioners in Spain, for example, are permitted to put patients on life support so their organs would be eligible for donation, rather than because life support improves the quality of the person’s end-of-life care. This would be uncommon in Canada because it would be perceived as inconsistent with good end-of-life care, he said.
Dr. Kramer, who noted he is not speaking on behalf of Alberta Health Services, said the key to increasing organ donations – whether through presumed consent or otherwise – is ensuring health-care workers identify eligible donors when they are in the emergency room or intensive care unit.
“If we adopt an opt-out system tomorrow, I would expect if it has an effect at all, it will be a very small one,” he said. “A very small one might be important [but] I think other things need to be coupled with that.“
Alberta’s bill, which receiving support from both sides of the aisle, is still in the preliminary stages of the legislative process.
“I don’t think we’re ready for it tomorrow,” Dr. Kramer said. "If it is introduced badly, without the engagement of the public, there are some risks to it.”
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