Saskatchewan families, recipients and donors are hopeful a new organ donor registry will help encourage families to honour the wishes of their loved ones when they die.
The province announced Wednesday it will spend $558,00 to create the new registry as part of the provincial budget.
"It's a difficult cold conversation for people to have with their families about their wishes when they die. That's pretty tough," said Errin Willenborg, whose husband donated his kidney to her.
"So if you can make your wishes known on an online registry and your family can truly know what you wanted done with your organs when you pass away, it's an exciting step forward."
Willenborg, who waited more than five years for a kidney transplant, hopes the new system will help reduce the transplant wait list.
Registries successful in other locations: Minister
Currently the system asks Saskatchewan residents to put a red sticker on their health card to indicate if they want to be a donor.
The registry won't change the fact that families can go against those wishes when the person has passed away.
But Health Minister Jim Reiter said there is data from other locations to suggest registries have better success rates when it comes to dealing with families.
"I'm told that registries that are in operation, that in those cases 90 percent of families accept what the wishes were. Those without registries [the number is] less than 50 percent," said Reiter at the legislature on Thursday.
In 2015, Saskatchewan had the lowest rate among all Canadian provinces for organ donation from deceased donors.
Dr. Joanne Kawchuk is a donor physician with the Saskatchewan Health Authority. Her role, which was created in 2018, supports the development of a new organ donation program and offers advice on supporting families through the process.
She said there is evidence that registries help families feel more comfortable in allowing their loved one to become a donor.
"The conversation around the opportunity to discuss with families, that still would be unchanged, I guess, compared to the sticker," said Dr. Kawchuk.
There's something about actually putting your name on something that makes it more meaningful. - Carol Brons, mother of Humboldt Broncos crash victim Dayna Brons
"But it does mean that we would now have a way to integrate that information to help inform families when they're often in a tragic situation near the end of life, or at the end of life, where their loved ones know what their family had wished."
Asked what the difference will be between the organ donor registry and the current sticker system, Kawchuk said there is currently no way for healthcare workers to track or share a person's organ donation information.
The registry is a departure from the province's previous commitment to work towards presumed consent, which requires the public to opt out of being a donor.
The government's current position is that presumed consent has not been ruled out, but that other measures are being tested first.
Not a pilot project
In a written response to questions, the Ministry of Health said its registry would still be needed if it decided to change to a model of presumed consent.
"You still need a formal way to track and record those people who choose to opt out, and ensure that information is available at the point of care where clinical decisions are being made," it said.
It said the registry is not a pilot program.
Minister Reiter said the registry now builds on conversations prompted by the "Logan Boulet effect."
Boulet, a young hockey player killed in the Humboldt Broncos team bus crash in 2018, has been credited for encouraging more people to indicate they want to be donors.
Six people benefited from his organs and nearly 100,000 Canadians signed up to become organ donors after learning he had signed his own card.
Carol Brons, whose daughter Dayna was also killed in the bus tragedy, said she thinks the registry will help improve organ donation rates.
"There's something about actually putting your name on something that makes it more meaningful," said Brons.
Her daughter had wanted to be an organ donor. Her family had discussed organ donation and they always put the red sticker on their healthcare card.
But she said circumstances prevented her daughter from becoming a donor.
Brons said it is important that people discuss their wishes with their families even if they have signed the registry.
"It's something your family needs to know as well and to be willing or able to grant that wish for you," said Brons.
"It's such an emotional time. It's not easy for the hospital staff to bring it up to you. But it's one of the things that you can do to honour your loved one's wishes."