Canada needs more organ donors.
“We have about 250 people who die waiting for an organ transplant every year in Canada,” said Amber Appleby, director of organ and tissue donation and transplantation for Canadian Blood Services.
“We would like that to be zero. We would like no missed opportunities for donation.”
This Sunday, Green Shirt Day, honours the memory of Humboldt Broncos defenceman Logan Boulet, who died April 7, 2018, after he was involved in a bus crash that took the lives of many of his teammates. Six lives were saved because he donated his organs and his story has since inspired others to do the same.
WATCH: Logan Boulet effect inspires generosity across Canada
But how does the organ donation system work in Canada? Here’s how lifesaving organs get from one person to another.
Donor registries
Every province has its own system for registering potential donors. In most provinces, it’s as simple as filling out a form online, though some still have a paper-based process, Appleby said.
The website organtissuedonation.ca has information on how to register in each province.
Donor information isn’t shared between provinces, though, and if you move from one province to another you would have to re-register in your new province’s system, she said.
Organs and tissues that can be donated include the heart, kidneys, liver, lungs, pancreas, small intestine, eyes, bone, skin and heart valves, according to the website beadonor.ca. One donor can save up to eight lives.
A person can still have an open casket at their funeral, even if they donated their organs – including the eyes. It won’t leave visible marks on the body that aren’t covered by clothing, according to the website. In the case of eye donations, while the whole eye is removed, funeral homes use special eye caps to give a normal appearance, which is standard practice whether or not someone donates their eyes.
Transplant registries
If, on the other hand, you’re someone who is ill and needs an organ, your name is added to a different list, like the National Organ Waitlist, which is operated by Canadian Blood Services.
You might be there a while, though – wait times for some organs can be years, depending on your location, said James Breckenridge, president of the Canadian Transplant Society.
In 2016, there were 4,333 people on a waiting list for a kidney, liver, intestine, lung, heart or pancreas across Canada, and 2,979 transplants performed, according to the Canadian Institute for Health Information.
Your position on the list is determined mainly by your condition’s severity, Breckenridge said. So even if you’ve been on a list for a year, someone who was just added might bump ahead of you if they need the organ more urgently than you do.
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Donation day
In Canada, most organs come from deceased donors. And very few people are actually able to donate, said Appleby.
“Only about less than two per cent of people will actually die in a way that enables them to be donors.”
Donation decisions are only made after a person is in the hospital, on life support, every life-saving treatment has been tried and the medical team says that there is nothing more they can do, she said.
The individual is assessed to see whether their organs can be donated and the decision is made based on risk, she said. Having diseases like Hepatitis B, for example, might not exclude someone: “If you’re going to die without an organ, then oftentimes recipients will accept the risk with the treatment that they know will be required as a result of receiving that organ,” she said.
In other words, living with Hepatitis B might be better than dying without it, and some people might choose to take that risk.
“With organ donation, because it’s such a scarce resource, what we ask is that everybody let the medical team and the assessment process either rule them in or rule them out, in terms of their eligibility,” she said.
If doctors determine that the organs are undamaged and suitable for transplants, they will then start a conversation with the family about possible donation.
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And it is a conversation: whether or not someone has registered as a donor, by common practice the next of kin still has the final say on whether their organs can be donated.
“If the family says, ‘We have reason to believe that was no longer their wish,’ we would honour that,” Appleby said.
There are many reasons why a family might not wish to proceed with organ donation, she said.
“And what you don’t want to do is move forward with donation against the family’s wishes because it could lead to quite a bit of mistrust in the system.”
Breckenridge thinks many potential donations are missed this way. Imagine a friend who just learned her husband is in a coma, he said.
“She’s at the hospital in total shock, and then somebody comes up to her and says, ‘Can we have his organs?’”
This is why he thinks it’s important that everyone discuss their decision to donate with their friends and family, so everyone is clear on what their wishes are and these conversations don’t come as a shock.
Even though the medical team will generally listen to the family’s wishes even if they contradict the donor’s, it’s still good to register as a donor, Appleby said.
“It helps health professionals have that conversation with families because it’s a difficult conversation to have. When they know a family is registered, it’s a much easier conversation.
“It also helps families because they don’t want to be making that decision for their loved ones at end-of-life not knowing what it is that they would have wanted.”
After a person has been declared dead and is confirmed as a donor, the clock starts ticking.
The transplant
Someone on the transplant waiting list gets a call and is asked to get to the transplant centre as soon as possible, Appleby said. In B.C., she said, people used to be given a pager so they could get to the hospital and prepped for surgery as quickly as possible.
“They don’t do that anymore because everybody has a cell phone. But the recipients are very diligent about keeping their mobile devices with them and charged.”
Organs are usually first allocated within the same province, she said, and if there is no suitable transplant candidate, they might be offered more broadly. Partly, she said, this is just because Canada is so big and most organs last only a few hours outside the body before they start to degrade.
Meanwhile, a surgical team goes to the organ donor, takes them into an operating room, and removes the organs to be donated, she said, “and then basically they have a process where they will package the organ, label it.”
They then deliver it to the transplant centre, where it’s put into the patient.
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The results can be amazing, Breckenridge said. Someone can start out in a coma with “20 bags of fluids going into their body” and “on a computer, complete life support, ventilated, just an incredible amount of wires and stuff hanging inside and out of them” before a transplant changes everything.
“When you see a person like that go from that to within a week, walking and standing up and being bright pink colour and healthy, it’s an amazing miracle to see.
“And that’s what organ donation does. That person could be easily dead, or the way they are today, alive and doing well.”