Who should get your organs? How assisted death raises hard new questions

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Organ donation recommendations raising new questions on assisted death
WATCH: How assisted death is raising new questions on organ donation – Jul 6, 2023

Should Canadians seeking medical assistance in dying (MAiD) be able to direct that an organ donated after their death goes to someone they choose?

New guidelines aim to provide guidance for the Canadian organizations and transplant programs facing that challenging question, though some experts are raising concerns about how to balance who a donor wants to get the organ with who might need it most.

The guidelines, published in the Canadian Medical Association Journal on June 26, outline the recommendations for how transplant organizations and programs should handle “directed donation”, in which a person still living can designate a recipient for one of their organs.

Typically, this is a loved one or close friend who is on the transplant waitlist.

Prior to the release of the new guidelines, Canadians could only select who could receive an organ through what’s known as “living donation.” That’s when a person donates an organ or part of one for transplantation to another person while both people are still alive. These usually involve organs that the donor can live without, such as part of a liver or one of their kidneys.

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In most cases involving an organ donor who has died, organs are provided to those most in need, rather than someone selected by the donor before death. Now, almost seven years after MAiD was legalized, one of the authors of the guidelines says the idea for directed donation came from questions being raised by MAiD patients.

“They said, ‘Okay, you’re now allowing organ donation after assisted dying, we want to have MAiD at home and still be an organ donor. We want to be able to choose who our organs go to,'” Dr. Kim Wiebe told Global News in an interview.

“Nobody’s done this before, but we want to try to accommodate patients’ dying wishes, essentially.”

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Wiebe and the CMAJ have now laid out guidance for how to approach the question.

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She cautioned it will still be up to organ donation organizations and transplantation programs to develop policies on how to handle directed donation requests for MAiD patients, but that the new recommendations are a “recognition of a need” for guidance.

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A list of “core principles” are laid out in the guidelines to help organizations craft their policies for donation, including the advice that directed donation requests be weighed on a case-by-case basis and for the organ recipient to be someone the MAiD donor has a “long-standing emotional relationship.”

It’s a common standard for living donations as well, as the recipient is often related to the donor.

Also included in the guidance is that both the donor and organ recipient must meet eligibility criteria: being on the current waiting list for a transplant or meet criteria to be put on that list.

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One of the other recommendations is that even if a person asks for their organ to go to a specific person, the person in greatest need on the waitlist should still be prioritized – meaning there’s no guarantee a parent, child or close friend would get that organ from a dying loved one.

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Bioethicist Udo Schuklenk, who also holds the Ontario Research Chair in Bioethics, told Global News the eligibility aspect is understandable as a clinician, but he doesn’t think it should apply.

“You can’t have it both ways,” he said. “You cannot on the one hand, [have] somebody saying, ‘I want my auntie or my son or my daughter or whoever to get this, and this is the only way I would do it.’ And… say, ‘Yeah, absolutely, great,’ and then just grab it and give it to somebody else.”

He said medical officials will need to “just bite the bullet” and say the organ would be given to somebody who may not be in the greatest need.

Schuklenk said overall, the choices of the donor should be respected and would still help cut the waitlist.

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James Breckenridge, president of the Canadian Transplant Society, said a person who planned to donate to a loved one could potentially be dissuaded from donating in the first place on learning their relative or close friend may not be guaranteed the organ.

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“There’s always going to be somebody on top of the list that needs a donor,” he said. “If this person was never going to be a donor anyway, this is a great way to get somebody a transplant and get them off the list.”

Wiebe, who helped write the recommendations, said patients would be told that transplant staff would try to donate to their loved one — but that to become a donor they must agree to the donation being “unconditional.”

Right now, she said the number of MAiD patients asking for directed donation is “really, really small” and likely wouldn’t have a “great impact” on the waitlist.

Wiebe cautioned though that the numbers are based on voluntary reporting.

In a statement to Global News, Canadian Blood Services, which oversees organ donation would not comment on potential questions regarding directed donation and MAiD. But it said CBS assembled a group of MAiD and organ donation experts to review legislative changes and consider updates on initial guidance laid out in 2017.

According to the Canadian Institute for Health Information (CIHI), there were 1,328 people who donated an organ in 2021 – an increase of nine per cent compared to the year prior.

There was also an increase in living donors that year, with 15.5 living donors per one million people – about a 20 per cent increase from the year prior.

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However, federal data suggests less than 25 per cent of Canadians are registered organ donors — even though one donor could save up to eight lives.

Last year, 39 per cent of those removed from the waitlist had died while waiting.

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