When Marie-Josée Prévost's father had a massive stroke, it was clear he would not recover.
By the time Prévost reached the hospital, her father was in intensive care and on life support.
Doctors told the family it would be extremely risky to operate. The damage was so extensive, the 81-year-old retired physician would likely remain paralyzed and unable to speak.
"That's exactly what he was scared of," said Prévost.
With surgery ruled out, Prévost said her tired and grieving family didn't know what to say when a doctor first raised the possibility of organ donation.
The doctor didn't walk them through the steps they'd need to go through for her father to become a donor, she said. It was unclear whether he'd remain on life support until the organ removal and if the family would have time to say their goodbyes.
"At what time is it time for someone to give their organs?" asked Prévost. "It's something that remains fuzzy to this day."
Feeling unsupported and unprepared for what to expect, Prévost's family ultimately refused to consent to organ donation.
Nearly 4 out of 10 families say no
According to Transplant Québec, which helps co-ordinate organ donations in the province, 37 per cent of families refuse to proceed with organ donation when a loved one dies — even when, in many cases, the dying person has signed their own consent.
"The families have the last word," said Dr. Prosanto Chaudhury, Transplant Québec's medical director of transplantation.
Prévost said in her father's case, she later learned he had consented to organ donation on the back his health insurance card. But he'd never talked about it with his family.
"If he had told us it was important to him, we would have done everything to make sure his wishes were met," said Prévost.
Many families find it difficult to accept their loved one won't recover, Chaudhury said, and if the question of organ donation hasn't been discussed in advance, it can come as a shock.
"It's an issue of education and letting the people around you know what you want," he said.
Knowing a potential donor had consented to organ donation can change the way the medical team approaches a family.
"Saying your husband had previously indicated that he wanted to be an organ donor is very different than, 'Hi. How do you feel about organ donation?'" said Chaudhury.
Opt out, rather than opt in?
Nova Scotia became the first jurisdiction in North America to pass a presumed consent law for organ donation in April. Over the next year, it will train medical staff and educate the public about the changes.
In Alberta, similar legislation passed first reading last week.
Quebec Liberal MNA André Fortin recently tabled a private member's bill on presumed consent in the National Assembly. If Bill 399 passes, Quebecers will automatically be considered an organ or tissue donor, unless they register to opt out.
When Fortin talked to constituents about the bill, he said one of the first people he spoke to was a man whose mother had died while waiting for a transplant.
"When we know that there are 800 Quebecers currently waiting on lists for organ donation, I don't know how we cannot want to do better," said Fortin.
According to Transplant Québec, there were only 164 donors and 451 recipients in the province in 2018.
Even if the government doesn't go forward with the bill, Fortin said at the very least, he hopes it will encourage families to talk about their wishes.
"If we've helped people have that discussion and it can help one or two people down the road, then that will be something positive," said Fortin.
How to give consent in Quebec
In Quebec, more than 3.2 million Quebecers are registered as potential organ or tissue donors with the province's health insurance board, Régie de l'assurance maladie du Québec (RAMQ).
There are three ways people can consent:
- Sign the organ donor sticker included with your health insurance card at renewal time.
- Register with the organ donor registry set up by the Chambre des notaires du Québec.
Transplant Québec says only 1.4 per cent of people who die in hospital each year are considered good candidates for organ donation. Most have suffered a brain injury due to a traumatic accident, stroke or lack of oxygen.
Presumed consent no 'magic bullet'
Moving to a system of presumed consent needs the proper infrastructure around it to work, said Chaudhury.
"I think we have to be careful believing … presumed consent or automatic consent is the magic bullet that's going to fix everything," he said.
Brazil had to repeal its presumed consent legislation in 1998 — the year after it was adopted — because of public backlash.
Spain, which leads the world in organ donation, has had presumed consent for years. But even there, Chaudhury said, the family refusal rate is about 13 per cent.
For presumed consent to be successful in Quebec, Chaudhury believes a broad public awareness campaign is necessary, and Quebec has to better organize the services it has.
The Quebec government's recent promise to increase the number of donation physicians from 10 to 32 is a good first step, he said. These specialists, located in health-care facilities across Quebec, help educate health-care teams in intensive care units and emergency rooms, where potential organ donors are usually found.
"Their role is to ensure that in their institutions, there is a set way of recognizing organ donors and making sure that organ donation opportunities are not missed," said Chaudhury.
Louis Beaulieu, Transplant Québec's CEO, said he expects to see the extra physicians in place sometime next year.
"It will take a bit of time to see the results," said Beaulieu.
He's seen the value of these experts in Ontario, which hired close to 60 donation physicians several years ago.
"They also get more money for nurses that are on the ground to help the families," said Beaulieu.
Ontario also has a more streamlined system when it comes to mandatory referrals for organ donations, Bealieu said.
Designated hospitals are required by law to call in every imminent patient death to the Trillium Gift of Life Network, Ontario's organ and tissue donation agency.
With a jump on identifying eligible donors, specially trained staff then approach families for consent.
In Ontario, Trillium received more than 5,000 referrals for organ donation last year, while Transplant Québec saw just 755 potential donors referred by hospitals over the same period.
Ontario's system is audited annually, tracking both referral and consent rates and identifying any patients that were missed, Beaulieu said.
The mechanism for referrals in Quebec isn't as straightforward: Beaulieu said the government would need to simplify the law to help drive up the number of referrals Transplant Québec receives.
"The number of absolute donors is very small — we're talking about 1.4 per cent of the people who die in hospital," said Beaulieu. "If you miss one, it may take 100 more people [dying] to be able to get another donor."
By the end of 2021, Beaulieu said Transplant Québec would like to see the number of donors increase to 205, which would potentially provide organs to more than 600 recipients.
He'd also like to see the wait time for an organ transplant go down — a win-win for patients and the medical system.
Two-thirds of the people on Quebec's waiting list need a kidney. Beaulieu said each kidney transplant would save about $50,000 a year in dialysis costs alone.
Prévost never imagined how confusing and emotional it would be to be asked to donate her father's organs. "We were shaken up," she said.
With a well-trained team in place to support families like hers through the process, Prévost said things might have been different.
Despite her family's experience, Prévost strongly believes in organ donation. She has made it clear to her children and her partner that she wants to be a donor, and she wishes her father had done the same.
If he had, she said their family would have made sure his organs went to people who needed them.
"It's a shame, because he could have saved lives," said Prévost.