When it comes to Canadian patients in need, there still aren’t enough healthy organs to go around.
There were 4,351 people on waitlists for organ transplants at the end of 2018, according to a new report from the Canadian Institute for Health Information (CIHI). The report says 223 people died while waiting for a transplant.
There has been significant improvement in organ donation supply — a 33 per cent increase in procedures performed in Canada between 2009 and 2018, CIHI said — but there are still many patients across the country for whom help never comes.
The report also outlined the types of donors active in Canada. Last year, there were 555 living donors and 762 deceased donors. The number of deceased donors increased by 56 per cent between 2009 and 2018, while the number of living donors remained relatively stable.
The number of Canadians diagnosed with end-stage kidney disease has gone up 32 per cent since 2009, which could in part be driving the increased need for organ transplantation.
“We know that organ transplants save lives. For most organs, patient survival is greater than 80 per cent after five years,” Greg Webster, CIHI’s director of acute and ambulatory care information services, said in a statement.
READ MORE: Here’s how donor consent works in Canada
The average number of organs from deceased donors used for transplantation is three. For donors age 39 and younger, the average is four.
This data doesn’t surprise Ronnie Gavsie, CEO and president of the Trillium Gift of Life Network, an Ontario organization that advocates for a wide array of solutions to the organ supply problem — above and beyond finding more donors.
“What many people are shocked to hear is that you are five times more likely to need an organ transplant than to become an organ donor,” she said. “Only a small number of people who die are clinically suitable candidates for organ donation. For this reason, other practices must be implemented to meet the need.”
Among other solutions, Gavsie recommends more education for medical staff about donation and advocates for expanding the definition of an “acceptable” organ to include “older donors and increased risk donors.”
Gavsie also said there’s a focus on advancing “ex-vivo” technology to allow for the assessment and repair of organs before transplant, effectively making more organs available.
“There is no silver bullet solution, but extensive public awareness campaigns to develop a culture of organ and tissue donation may positively impact donation rates.”
How organ donation works in Canada
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, Canadian Blood Services director of organ and tissue donation and transplantation Amber Appleby previously told Global News.
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.
Very few people are actually able to donate.
“Only about less than two per cent of people will actually die in a way that enables them to be donors,” said Appleby.
Donation decisions are only made after a person is in the hospital, on life support, the medical team says there is nothing more they can do and every life-saving treatment has been tried, she said. The individual is assessed to see whether their organs can be donated and the decision is made based on 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. The next of kin still has the final say on whether the organs can be donated.
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.”
When a family has evidence of what their loved one wanted – through their registration status – it is much more likely that the family will agree to donation, said Gavsie.
If a family approves 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.
“The recipients are very diligent about keeping their mobile devices with them and charged.”
Organs are usually first allocated within the same province, 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.
How to become an organ donor
The process to become an organ donor is different for each province and territory.
To learn more about how to become an organ donor where you live, visit organtissuedonation.ca/en.
— With files from Leslie Young