A growing number of patients requesting medical assistance in dying want to donate their organs for transplant, says an international review that found Canada performs the most organ transplants from MAID patients among the four countries surveyed, which offer this practice.
The report is the first overview of the growing use of this new practice worldwide. The review was conducted in 2021 and the results were officially published in December 2022.
“We saw that everyone was working in different directions. And then we said, ‘Okay, okay, let’s start an international (discussion) of all the countries involved,'” said Dr. Johannes Mulder, a physician and MAID provider in Zwolle, Netherlands, in an interview with CTV News.
Data compiled for the article shows that in Canada, Belgium, the Netherlands and Spain combined, 286 assisted dying recipients will provide life-saving organs for transplant to 837 patients in the years up to and including 2021.
Doctors in Canada, where medical assistance in dying (MAID) was decriminalized in 2016, performed almost half of the world’s post-MAID organ transplants during that period (136), according to the publication.
Data from the Canadian Institute for Health Information confirms that this new source of transplant organs will account for six percent of all deceased donor transplants in Canada in 2021. Some transplants, such as kidney and liver transplants, can be performed with patients who who are alive.
“I was quite proud that Canada did so well in terms of organ donation from MAID patients,” said Arthur Shaffer, director of the Center for Professional and Applied Ethics at the University of Manitoba, in an interview with CTV News.
With more than 4,000 Canadians waiting for organ transplants, some of whom are dying, he says Canada’s numbers show a strong move to turn death into a win.
“So I say, ‘Good for us.’ It’s a wonderful opportunity for someone facing death to do something meaningful with the end of their life,” Shaffer said.
A PATIENT-DRIVEN TREND
The international review of this new practice is primarily driven by patients who suffer from irreversible degenerative diseases such as amyotrophic lateral sclerosis (ALS) and Parkinson’s disease.
“If this body has abandoned me, I could do something good,” Mulder says, as patients make their decision.
Canadian ALS patient Sharron Demchuk donated her kidneys and lungs after her medically assisted death in September 2021. Her family says she herself prompted her doctors to think of a way she could help people after her death by became the first in New Brunswick to do so.
“She kept following up, kept pushing, and even though she couldn’t speak, she was taking notes on my dad. “Here’s what I want you to ask them.” That’s what I want you to say,” her daughter Darlene Demchuk told CTV News last year.
One of the goals of the international report, Mulder says, is to openly share information about how countries are managing this controversial and evolving new practice, including the difficult ethical and logistical issues of consent from vulnerable patients.
“What should you do or what should you not do? And how do we keep the whole project completely voluntary,” he said of some of the concerns, noting that patients should never be pressured into choosing MAID to increase the availability of donor organs.
It’s a concern shared by Trudeau Lemmens, a professor of health law and policy at the University of Toronto.
He points to statistics showing that more than 35 percent of Canadians who died of MAID in 2021 felt “a burden to family, friends or caregivers,” according to a Health Canada report.
“I worry that people who struggle with a lack of self-confidence and self-esteem may be forced to see this as an opportunity to mean something,” Lemmens said in an emailed comment to CTV News.
With other countries such as Australia looking to medical aid in dying alongside organ donation, Mulder says public trust in this new medical practice needs to be developed and maintained.
“That’s why guidelines are necessary and should be strict,” the doctor said.
WHY CANADA LEADS THE WORLD IN ORGAN TRANSPLANTS AFTER MAID
“Our guidance is Canadian and (it) works well,” said Dr. Sam Shemmy, an intensive care physician in Montreal and medical adviser to Canadian Blood Services, who helped create the roadmap guiding health care workers in Canada in 2019 .
Like other countries, Canada requires that the decision be voluntary. MAYD donors give informed consent and competence. The guidance says MAID selection and approval should come first. The decision to become an organ donor can only be formalized by a separate transplant team.
“The first thing is, ‘Are you accepted?’ And once you’re accepted, it’s your decision to continue.
“We would never say, ‘Hey, do you want MADE?’ and ‘Hey, do you want to be an organ donor?’ It’s not ethical,” Shemmy told CTV News, adding that patients also have the right to change their minds at any time.
And Canada has other measures that may explain the higher number of MAID donors.
In other countries, the patients themselves must first express the idea that they want to donate. But Quebec and Ontario started notifying patients earlier.
“In our province, actually, if the law says that someone is going to die, you have to offer them organ donation, organ and tissue donation, and we have to apply that to MAID patients as well,” said Shemmy of Quebec politics.
The other difference in Canada is based on the types of patients receiving MAID. In the Netherlands or Belgium, there is a higher proportion of end-stage cancer patients who choose euthanasia. Cancer patients cannot donate because of the risks to organ recipients.
In Canada, statistics show that 65 percent of patients seeking MAID have cancer.
“I think that’s one of the reasons we’re ahead of the game because more patients who seek MAID in Canada are eligible for donation because they have diseases like ALS, amyotrophic lateral sclerosis or multiple sclerosis,” said Shemmy.
ORGANS FUNCTION WELL
The international review also shows that despite concerns that the cocktail of drugs used in assisted dying can damage organs, studies from around the world and here in Canada show they are unharmed and do very well after transplant.
An Ontario study of kidney recipients found that eight out of nine kidneys from MAID donors began to function normally almost immediately after transplant, with patients avoiding the need for even temporary dialysis.
“Some of the functions of these organs were almost as good as organs from living donors,” said Dr Patrick Luke, study author and co-director of the Multi-Organ Transplant Program at London Health Sciences.
“As far as our transplant patients go, everything has been very positive so far,” he told CTV News.
Studies of lung transplants have shown similar success, with scientists now investigating the potential use of other tissues, including islet cells, to treat people with severe diabetes.
HOME TO HOSPITAL
Canada is also at the forefront of another emerging trend.
Until recently, only those who agreed to undergo a medically assisted death in a hospital could donate their organs. It was easier and safer for extraction and transplant surgeons.
According to Health Canada data, 44.2% of MAID services in Canada were at home.
The report shows there are now eight documented cases worldwide of providers offering assisted death in the patient’s home. Five of them were in Canada.
The MAID recipient is given the medication in their home and then transported by ambulance to a nearby hospital to complete the procedure and have the organs harvested.
Dr. Shemmy described the case of a patient in Ontario, saying that “with a lot of help from the paramedics at the fire department … we were able to make it easier.”
But there are differences between countries about how to do this and what drugs to use.
In fact, Canada is currently updating its protocol, now submitted for publication in the Canadian Medical Association Journal, and Dr. Shemmy says it will be shared with other countries considering expanding assisted dying and organ transplantation.
This is the kind of openness and transparency that Dr. Mulder envisions.
“These are all reasons why we wanted to issue this document now, and we hope that every hospital and every jurisdiction will take this as a starting point for writing ethically sound protocols,” he said.
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