Organ donation changes dying for those getting medically assisted death

When ALS diminished Brian Wadsworth’s quality of life, he asked for medical assistance in dying. Organ donation was the natural next choice. And while the decision came with logistical challenges and ethical concerns, his loved ones say he never looked back.

People who have chosen to die with medical assistance are often the best candidates for donation

Brian Wadsworth lived life to the limit. When Lou Gehrig’s disease diminished his quality of life, he became one of the first people in Canada to request both medical assistance in dying and organ donation. (Brian Wadsworth's blog, Confusion on the Water)

When ALS diminished Brian Wadsworth's quality of life, he asked for medical assistance in dying. Organ donation was the natural next choice. And while the decision came with logistical challenges and ethical concerns, his loved ones say he never looked back.

"I think it's kind of Brian's character, it was always somebody else needed help, he was going to help. … Even in his dying he was still able to help some people," says Rob Molyneux, a close friend.

"Organ donation became really important to him, because he was very caring and very giving," adds Rob's wife, Sonia Molyneux. "That was just another way for Brian to give. Give life to somebody."

Medical assistance in dying, or MAID, has been legal in Canada since July 1, 2016. Since then, some of those opting for assisted dying have also donated organs and tissues for transplant, but the numbers are small.

In Ontario, there have been fewer than five organ donations and 56 tissue donors as a result of MAID. In British Columbia, the numbers are so low they're not provided, to protect the identity of patients. Wadsworth is the first in Manitoba to donate organs. In his case, it was two kidneys.

So far, MAID donor numbers in Canada haven't affected organ transplant wait times — but that could soon change.

People who have chosen to die with medical assistance are often the best candidates for donation.

"We know exactly what the patient wants, and we have multiple encounters with them, and they have multiple opportunities to change their mind," says Dr. Adrian Robertson, medical director of Transplant Manitoba's Gift of Life program.

"So as far as consent goes, this is probably around the strongest level of consent you can have for anything."

Doctors know which organs are healthy ahead of time and can plan for both the removal procedure and the transplant.

"In donation after cardiac death, regardless of if it's from MAID or from conventional withdrawal of life-sustaining therapy, the more quickly the patient dies, the less stress the organ goes through, and patients with medical assistance in dying tend to die fairly quickly," Robertson says.

Logistical issues

Which is why the medical system is working through logistical issues and ethical concerns that don't come up for non-MAID donors.

For one thing, the dying process becomes more medicalized. Patients need to undergo sometimes uncomfortable and inconvenient medical tests to see if their tissues and organs are viable for transplant.

If someone is getting medical assistance in dying and wants to donate their organs, they have to be in a transplant-capable hospital, close to an operating room.

'We're trying to reduce the impact of organ donation on the last few hours of their life. We want it to be a time they enjoy with their friends and family and leaves everyone with lasting memories, not of a hospital,' says Dr. Adrian Robertson, medical director of Transplant Manitoba’s Gift of Life program. (Lyzaville Sale/CBC)

If someone is donating just tissues, they can die at home. Tissues don't die or become damaged as quickly as organs, so there's more time to get them to the OR.

"Most patients would prefer to die at home," Robertson says. "So this is an extra burden to the patient. That's explained to them, and in some ways signifies their interest in donation that they're willing to forgo that part of the beauty of medical assistance in dying and take on this extra burden of donation."

Part of the burden could be refraining from alcohol and recreational drugs, which would be part of the assessment and consent process.

"What are the things that might hamper a very successful transplant, if that's their desire, to make sure their organ is a gift of life for another person? … There might be compromises or small amounts of things that would be allowable but not in large quantities, but that would be case-specific," said Lori Lamont, acting chief executive of the Winnipeg Regional Health Authority. Part of her responsibilities include MAID and Transplant Manitoba.

Friends and family scatter rose petals in the Gimli Harbour in Wadsworth's honour. He loved to sail and scuba dive before he was diagnosed with ALS. (Brent Driedger )

For now, the MAID procedure rules out a heart transplant.

"The primary damage in MAID is to the heart, so they would not be a candidate to donate their heart for transplantation. As soon as the heart stops, the circulation of those drugs stops as well so there's a very limited risk that those drugs would damage other organs," Lamont says, though research and experience could change that.

The patient chooses the date and time for the procedure, and consent is reconfirmed. Once death is declared, the patient is taken to the operating room. The organs are retrieved within an hour of death and transplanted within 24 to 48 hours.

"We really do need to move quite quickly," Lamont says.

Still, Robertson doesn't foresee a time when the MAID patient is prepped for transplant in the OR before death.

"We're trying to reduce the impact of organ donation on the last few hours of their life. We want it to be a time they enjoy with their friends and family and leaves everyone with lasting memories, not of a hospital," he says.

Ethical questions

Beyond the logistics, there are ethical questions, starting with whether or not a MAID patient should be asked about organ and tissue donation.

Legislation varies from province to province.

Ontario has legislation that mandates doctors to inform the Trillium Gift of Life Network if they know about a death that could result in donation, so they can ask the patient or family about it. That applies to MAID deaths.

In other provinces, including Alberta, Manitoba and Quebec, MAID patients are not asked about organ or tissue donation unless they bring it up.

The concern is whether people will feel pressured to die so they can donate their organs — or feel pressured to donate their organs so they can get MAID. That's why these discussions are supposed to happen with different people from those handling the assisted dying procedure.

Other questions include:

  • Should medical staff opposed to assisted dying be compelled to retrieve the organs or assist in the transplant?
  • Should recipients be told how the organs became available?
  • What happens in the case of directed organ donation — where the donor asks for MAID to give an organ to someone who needs a transplant?
Since 2011, Wadsworth, left, was a crew member on Wild Rover during Gimli Yacht Club’s Wednesday night racing series. (Linda Vermeulen)

"We have to be really mindful of all the potential ethical conflicts that may emerge with that. It's not necessarily a conflict in and of itself but we have to be really vigilant about that," says Kerry Bowman, medical ethicist at the University of Toronto.

"There could be a form of complex cases that we haven't even thought through yet that could emerge from this. But the act of organ donation is, from an ethical point of view, a very deep, pure act of altruism, and I do not think we could ever take that away from people. Again the way that people die is so important to them, as it should be."

'He was steadfast'

Brian Wadsworth's friends say logistics and ethical concerns were never factors in his end-of-life decisions.

And they say he would be proud to know two people successfully received his kidneys.

"He would feel like he died with a purpose and that he helped, he was able to help two people," says Sonia Molyneux. "That's why, I think the more people know this is an option, obviously Brian would want that story to be told. That would be part of his legacy, I guess. Choosing what's going to happen and making a statement at the end and ensuring something good can come of it.

Rob Molyneux adds: "He had the ability to say no. Right up until the final few moments. He was steadfast that he was going to do this."

Wadsworth spent the last eight months of his life living with Rob and Sonia Molyneux. They accompanied him to most of the meetings and appointments associated with MAID and organ donation. (Lyzaville Sale/CBC)

About the Author

Karen Pauls

National Reporter

Karen Pauls is an award-winning journalist who has been a national news reporter in Manitoba since 2004. She has travelled across Canada and around the world to do stories for CBC, including the 2011 Royal Wedding in London. Karen has worked in Washington and was the correspondent in Berlin, Germany, for three months in 2013, covering the selection of Pope Francis in Rome. Twitter @karenpaulscbc

With files from Brett Purdy