Quebec must clear up confusing rules around organ donations, group says
Survey results from Transplant Quebec
The group in charge of co-ordinating organ donations in Quebec says the laws regarding transplants are confusing, and it's up to the provincial government to clarify them.
As a result of that confusion, Transplant Quebec says family members often get in the way of their deceased relative's wish to donate organs after death, even if that person had already provided consent.
The group is speaking out and releasing data from a survey it conducted of 1,201 adult Quebecers last month in partnership with Léger, which showed that 70 per cent of respondents are against the idea of families having final say about a loved one's wish to donate their organs.
It also found that 80 per cent of people believe a family should not go against the wishes of the deceased and the majority of physicians would not go ahead with enforcing a deceased person's wishes if the family objected.
But in many cases, that's exactly what is happening.
"You have to remember that all of these families would be actively going through acute grief of losing a loved one," said Dr. Matthew Weiss, the medical director of organ donations with Transplant Quebec, when describing the state of mind of people who don't want their family member's organs to be donated.
"The law might suggest that I should go ahead [with the transplant procedure], or that the clinician should go ahead, but that's often a very difficult thing to enforce."
Transplant Quebec wants the province to do two things: organize a public consultation to let Quebecers weigh in on how they want organ donations to be done and then, provide clarity to the laws.
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Weiss said the lack of clarity in the law not only leads to physicians having uncomfortable conversations with grieving loved ones but also contributes to longer wait times for people who need a transplant.
CBC News has reached out to both the province's Health Ministry and the office of Quebec's health minister, Christian Dubé. We have not yet heard back.
What does the law say?
There are three ways people can consent to organ donation in Quebec: Registering with the organ donor registry set up by the Chambre des notaires du Québec, registering online with the Régie de l'assurance maladie du Québec (RAMQ) or signing the organ donor sticker included with your health insurance card at renewal time.
According to Quebec's Civil Code, people who are at least 14 years old can authorize the removal of their organs "for medical or scientific purposes."
"The wishes expressed shall be followed," the provincial law states, "unless there is a compelling reason not to do so."
The word "compelling" creates confusion, Weiss said, adding that some compelling reasons are obvious — for example, the person who died had a disease that can be transmitted to an organ recipient — but many others aren't.
"If the family were to say that the patient had changed their minds, that's a much more delicate question in terms of what to do in those situations."" said Weiss, who is also a pediatric and intensive care physician at the Centre hospitalier de l'Université Laval in Quebec City.
According to Transplant Québec, there are about 900 Quebecers waiting for transplants. Weiss says the lack of clarity around the law on organ donations prolongs that waiting time.
In about a quarter of the cases where families refuse to donate their loved one's organs, the person who died had initially agreed to do so, Weiss said. It works out to about 50 families per year.
"Fifty donors per year doesn't sound like an enormous amount, but to put it in perspective, we do about 160 to 180 donors per year," he said.
"And each donor often gives more than one organ so it could be up to 200 more transplants per year in Quebec if in this situation we improved our consent rate."
For people worried about their families overriding their consent, Weiss urges them to be open with those around them about their desire to donate.
That way, if they die, their families will be more prepared to handle that conversation with physicians, he said.