Janice Findlay wants to die. The 62-year-old has had two strokes in the past seven years, and is now paralyzed on her left side. She uses a wheelchair, has a hard time remembering things and is always uncomfortable.
She’s just completed her application to be considered for medical assistance in dying (MAID). “If they came to me today and said okay, we can do it, I’d roll up my sleeve,” she says, gesturing to her arm. “I just want it to be over with.”
In the meantime, she’s getting everything in order: She’s informed her brother, done her will and even written her eulogy. She’s also made it clear that when she dies, she’d like to donate her organs. “I really want to do it,” she says. “I figure my heart’s good, my kidneys, my liver… I mean, there might be a little girl at Sick Kids, who’s maybe 14, maybe she could use my kidneys. It makes sense to me.”
To Findlay, this feels natural – after all, she says, she has always been a registered organ donor. But the medical community is still figuring out exactly how – and if – organ donation and MAID should be combined.
MAID offers some unique upsides related to organ donation: patients can consent directly beforehand, and MAID donors die quickly, so all their organs are more likely to be suitable for donation. But there are also concerns that having the option of organ donation might make people feel pressured to have MAID. It’s “very complex, ethically,” says Kerry Bowman, a bioethicist at the University of Toronto. “But the alternative is we say we won’t do it because it’s too ethically complex, and I think that would be even more problematic.”
Donating organs after medically assisted death
Many people who have MAID are not good candidates for organ donation. The majority have cancer, which usually excludes them, and others are too old to donate. But some can: A recent analysis of euthanasia patients in Belgium found that number to be around 10 percent.
In Belgium and the Netherlands, more than 40 people have donated their organs after assisted death. In Canada, less than a handful have, although this number will almost certainly increase. Many more have donated tissues, such as eyes, skin and bones, which can be removed hours after death.
Organs are more complicated. Some people who donate organs are “brain dead” which means they have irreversibly lost brain function. They’re kept alive on a ventilator, and their organs are removed just before they’re taken off of the ventilator. All others undergo what is called “donation after cardiac death” which involves taking people off a ventilator and waiting until the heart stops to remove the organs.
MAID patients fall into the second category. But they differ from typical donors, because MAID leads to death in minutes. In donation after cardiac death, the heart can sometimes keep going for a long time after the ventilator is removed – hours, or even days. As that time passes, the organs can become damaged and no longer suitable for donation. A liver needs to be removed within half an hour of life support removal, and even then, may function significantly worse than one taken from someone who is brain dead. The kidney and pancreas last an hour or two. Because people have been on a ventilator, their lungs are often compromised, and can’t be used no matter how quickly they die.
In MAID, on the other hand, because death is fast, nearly all the organs remain usable. “When you look at some of these organs, there’s a potential that this could be a large number for Canada, especially for lungs and kidneys,” says James Downar, a critical care and palliative care physician at the University Health Network.
That’s incredibly important, of course, to patients on the receiving end. In 2014, 278 Canadians died while waiting for a transplant. “One third of people who need a liver will die while waiting,” says Bertus Ecksteen, a clinical associate professor of medicine at the University of Calgary. “It’s a life-saving procedure. And they don’t just survive: they can return to a normal life.”
The people donating their organs also benefit emotionally, says Atul Humar, director of the multi organ transplant program at University Health Network. “It gives some people a much greater sense of well being to know that they can make this contribution at the end of life,” he says.
Plus, since MAID patients are aware of their imminent deaths, they themselves can consent, rather than the family needing to make the final call. “In my mind, there’s nothing better than getting first-person consent,” says Humar. Yet that fact makes others uncomfortable, says Downar, who just co-chaired a conference led by the Canadian Blood Services that discussed guidelines around organ donation from the “conscious, competent” donor. That includes both people on life support who are asking for it to be withdrawn, and those getting MAID.
The main worry in this area is that people might feel pressured to die so they can donate their organs. “There is always concern about vulnerability when talking about MAID,” says Bowman. “People might think that they’re more a service to society by dying than by living, that would worry me…. The purity of the decision could become a bit clouded.”
Directed donation – where patients are donating an organ to a relative or friend, rather than just to the system – would be even more complicated. It hasn’t happened yet, but it would add another layer of pressure, says Jennifer Chandler, a law professor at the University of Ottawa who specializes in biomedical science and technology. On the other hand, she says, “if you’re thinking I’m going to need MAID in the next six months anyway, and why don’t I do it now because I have this family member who’s dying of liver failure – why wouldn’t we let people do that?”
To prevent any pressure, conversations around organ donation happen after the decision to get MAID, and include counselors trained to have neutral discussions. The processes differ by province. In Ontario, legislation mandates that doctors inform the Trillium Gift of Life Network when a death that could result in donation will soon occur, so they can speak to the family or patient about donation. That also applies to MAID deaths. In Alberta and Quebec, on the other hand, MAID patients aren’t approached about donation unless they bring it up.
For patients, there is also a key practical downside: they would have to die in the hospital, instead of at home. Many patients find this “quite an imposition,” says Downar. It’s likely not the death they’d imagined. And it leaves the family with less time with the body: After the person has been dead for a few minutes, they are rushed to the operating suite, because the organs need to be removed as quickly as possible. In Quebec, they sometimes withdraw life support in the operating room itself.
The questions continue there: should doctors who are against MAID be required to remove organs from MAID recipients? There are no national guidelines on this, but at Toronto’s University Health Network, doctors who are conscientious objectors to MAID aren’t required to remove organs from MAID patients, says Humar. Downar says this doesn’t fall into the protected territory of conscientious objection, but that out of respect for colleagues, it would make sense to simply assign a team that didn’t object to do the removal.
Organ donation euthanasia
A more extreme version of organ donation is also being debated by ethicists. It’s one that would break the “dead donor” rule that is held sacrosanct right now. That rule decrees that the person must be “well and truly dead,” as Bowman puts it, before you can remove organs. That translates into a certain amount of minutes after the heart stops – say, five or 10, though that number varies across the country.
In the case of medically assisted death, where death is certain, some wonder if you could wait less time. Others have pushed this idea further: if a person could consent to medically assisted death, could they die on the operating table?
Called organ donation euthanasia, this would involve putting the patient under anesthesia, then getting their organs ready for removal. The doctors would then use potassium chloride to stop the heart. Having this happen on the operating table would mean that doctors could retrieve all the organs, as well as the lungs and heart, which are usually only available from people who are brain dead before death.
Bowman sees organ donation euthanasia as “highly problematic – both ethically and legally,” and Chandler agrees. “It’s so contrary to the ethos in the organ donation community of the dead donor rule that they wouldn’t want to go there,” she says. “The public relations fallout would be catastrophic.” If that causes the public to lose trust in the organ donation system, it could actually result in fewer organs donated overall.
Ethicists have also raised some downstream issues for straightforward organ donation and MAID. Should people receiving a donated organ who oppose MAID be able to be told where these organs are coming from, and to refuse them? Some bioethicists from Quebec have suggested this would be easy enough – patients’ preferences about the organ they receive could simply go on the list, and they would be passed over for a MAID organ. Yet patients aren’t currently told, for example, whether their donor committed suicide or was a criminal. Why should MAID be different?
Some European jurisdictions do tell people that the organs are from MAID, but there is no evidence to suggest that patients are turning organs down for that reason. In fact, Downar says, many of the “fears that we have in the academic and medical community about this are generally restricted to us.”
“The drive for this comes from the donors,” he says. “They want to give. For someone who is suffering or dying, it can help them find some meaning, some positive in that.”