As P.E.I. considers presumed consent for organ donation, experts say system support is crucial
Motion on presumed consent for organ donation passed unanimously in legislature
Matt MacFarlane still remembers the moment 24 years ago when he learned he would need a kidney transplant.
"I was 12 when I was diagnosed with kidney disease. I was told at that age that at some point in my life I'd need dialysis or transplant. I managed to get to age 26 under my own steam, and at that age I was told it's time," he told This is P.E.I. podcast host Mitch Cormier
When that time came, all three of his sisters stepped forward to be tested as potential transplant donors. All were good matches, and one of them, Rosie, didn't hesitate.
"I was the one who was in the best position at the time to donate. There was no deliberation. It was just something you do," Rosie said.
MacFarlane, now the Green MLA representing Borden-Kinkora, was recently among those who voted in favour of a motion that aims to improve organ donation rates in P.E.I.
The motion, introduced by Liberal MLA Gord McNeilly, proposes that P.E.I. adopt a presumed-consent model for organ and tissue donation. It passed unanimously in the provincial legislature.
Under this model, individuals who die are assumed to have given consent to donate their organs and tissues unless they have actively opted out.
P.E.I. currently uses an opt-in system, meaning individuals must sign up to become organ and tissue donors in the event of their death.
But as the province considers this change, experts say legislation alone won't be enough; the whole system needs to be ready, too.
Presumed consent model in Nova Scotia
P.E.I. relies on other provinces, including Nova Scotia, for many specialized health-care services, including organ harvesting and transplants.
Nova Scotia became the first jurisdiction in North America to implement presumed consent in 2021. In that province, residents over the age of majority who have lived there for at least 12 months are automatically considered potential donors unless they opt out or have otherwise communicated their wishes.
Dr. Stephen Beed, a professor at Dalhousie University's medical school, was one of those physicians who helped create the presumed-consent model.
"We had about 17 donors per million when we began this journey, and we are now more than double that," he said.
"In an environment where getting a 10 per cent increase per year might be considered a good year, we have more than doubled our donation rate, and our trends are that it's going to get even better than that. We've almost tripled the number of actual transplants that are being done."
It takes more than just a law
Beed noted that legislation alone did not drive Nova Scotia's success.
"We had the chance to completely reboot our entire program, top to bottom, and think about what we could do better in all components of the donation process," he said.
"And collectively that process, under the umbrella of this new law, has dramatically increased donation."
That included training health-care workers to better identify potential donors, something that often didn't happen in the past.
Previously, health-care professionals in emergency departments and ICUs often missed potential donors because they didn't have much education around it, Beed said.
"So a potential donor might be right in front of them, and they didn't recognize them as a donor, so they didn't make the phone call," he said.
Now, Beed said they are asked to call about almost any potential case, which dramatically increased referrals from around 50 per year to more than 400 annually.
The province also provided funding to support this systemic overhaul, which Beed called "very, very modest by health-care standards" but made a significant difference.
"If in the context of bringing a new law on board, you recognize that you need to provide support, to reboot and support the system you're bringing on board, now you have the chance to be successful."
With P.E.I. looking into the presumed-consent model, Beed said building the right infrastructure alongside legislation will be key.
Building the foundation
Angela Carpenter, manager of P.E.I.'s organ and tissue donation program, agrees.
"In order for presumed consent to be successful, we would have to have the foundations of a good organ and tissue donation program here on P.E.I.," Carpenter said.
That includes training health-care providers on when and how to refer donors, what information to gather, and how to communicate with families.
Public education is also critical, Carpenter said. This month, the province is running a campaign to tackle common myths and facts about organ donation.
"A lot of people will rule themselves out. They'll think, you know, 'I can't be a donor because I'm too old or I'm on medication or I have a condition,' and really, we don't know until the time comes what the criteria are going to be. So we do encourage everyone: If you want to be a donor, put your name on the registry, and we'll sort everything out when the time comes."
Carpenter also stressed the importance of having conversations about donation preferences when people are healthy, not during a crisis.
She added that at the end of March, 10 Islanders were waiting for transplant organs including kidneys, liver, heart and lungs, a slight decline from the waiting list in recent years.
'One of the lucky ones'
As for Rosie, she said donating a kidney to her brother more than two decades ago hasn't changed her life much, but she knows people have questions.
"I guess people who are considering it want to know if it's affected me physically, my lifestyle, which it absolutely has not. I have an active job, I have an active lifestyle. I have two healthy children that I had after this transplant," said Rosie, who is a freshwater fish biologist.
"I never think about the transplant, and unless Matt on the anniversary every year — if he doesn't send me a message, I just don't remember it. I feel no different at all."
As for Matt MacFarlane, he said he's always been grateful.
He remembers, after his surgery in Ottawa, seeing another patient whose transplant ultimately failed. That patient died within just two months.
"And here I am with kidney function almost at the same level that it was when I had the donation 24 years ago. So I am one of the lucky ones in so many regards."
With files from This is P.E.I.