Quebec must clear up confusing rules around organ donations, group says

The group in charge of co-ordinating organ donationsin Quebecsays the laws regarding transplants are confusing, and it's up to the provincial government to clarifythem.

As a result of that confusion, Transplant Quebec says family members often get in the way of their deceased relative'swish to donate organs after death, even if that person had alreadyprovided consent.

The group is speaking out and releasingdata from a survey it conducted of 1,201 adult Quebecerslast month in partnership with Lger, which showed that 70 per cent of respondentsare 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 themajority 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'soften a very difficult thing to enforce."

Transplant Quebec wants the province to do two things: organize a public consultation to letQuebecers weigh in onhow they want organ donations to be doneand then, provide clarity to the laws.

WATCH| Quebec doctor explains how to best avoid confusion about organ donations:

Tell others about your wish to donate organs, Quebec doctor urges

2 years ago

Duration 0:53

Dr. Matthew Weiss, who is with Transplant Quebec, says being open about your wish to donate your organs can help prevent family members from refusing a transplant on your behalf after death.

Weisssaid the lack of clarity in the law not only leads to physicians havinguncomfortable conversations withgrieving loved onesbut also contributes to longer wait times for people whoneed atransplant.

CBC News has reached out to both the province's Health Ministry and the office ofQuebec's health minister, Christian Dub. We have not yet heard back.

What does thelaw say?

There are three ways people can consent to organ donationin Quebec: Registering with the organ donor registry set up by the Chambre des notaires du Qubec,registering online with theRgie de l'assurance maladie du Qubec (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.

"Ifthe family were to say that the patient hadchanged 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'Universit Laval in Quebec City.

According to Transplant Qubec, there are about 900 Quebecers waiting for transplants.Weiss says the lack of clarity aroundthe law on organ donations prolongs thatwaiting 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 toabout 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.