Ever since Camille Betts can remember, her father Norman always donated his blood.
He had the universal blood type of O negative. As a result, Camille says her father felt it was important for him to regularly roll up his sleeve.
But Norman wasn’t only passionate about blood donation. He also believed in organ donation.
“He always talked about organ donation as a thing that should be done. The way he looked at the world was always, ‘How can we help the most people?’” says the Vancouver woman.
So, when her father was diagnosed with amyotrophic lateral sclerosis (ALS), she knew he wanted to donate his organs when he underwent medical assistance in dying, also known as MAID, on May 19, 2021.
“I think especially with ALS, there's no effective treatment. You are on this downward path of losing motor function — knowing that you're not going to find a cure for it, at least at this point in medical time. So, I think it also gave him something that made him feel like there was a purpose to everything that was going on,” says Betts.
The journey to organ donation while on MAID
While her father was preparing for a date with MAID, the option for organ donation wasn’t as widely known by patients, and in some cases, by health-care professionals.
Because she knew her father’s passions, she took it upon herself to find out whether organ donation on MAID was a viable option.
“I actually read a news article in Nova Scotia, where someone had done transplantation with MAID and that was when I thought to myself, ‘OK, they've got to be doing it here.’ And so, then we contacted BC Transplant directly.”
After the initial internet sleuth, Betts’ father asked his community health nurse about organ donation on MAID.
“She wasn't aware that it was something you could do. We had asked about it, I think maybe a few weeks or a month before and had been told no, it's not a possibility,” she recalls.
As a registered nurse, Betts knew the importance of advocating for oneself as a patient. Despite the nurse’s response, Betts continued to research the process, and eventually, “we were able to find out that you could do it," she says.
MAID became law in Canada in 2016, allowing people who suffered from a serious, incurable illness, disease or disability to apply for and receive MAID. Through its infancy, organ donations were only arranged if the patient receiving MAID wanted to pursue it, says Dr. Sean Keenan, the provincial medical director for donation services at BC Transplant.
“We were quite conservative and only people who sort of initiated the process themselves, would we look into arranging this for. However, our general philosophy is that that organ donation is an end-of-life option that should be open to anybody who potentially could be an organ donor.”
In recent years, Keenan says BC Transplant has been working with MAID providers to better communicate that the option of organ donation is a possibility.
“We're still in the process, I would say, of trying to make this a more standard approach. We clearly don't want to push things on anything. We just believe that people should be aware, because if they're not aware, then they don't know.”
A final goodbye, a celebration of life
Leading up to her father’s MAID date, Betts says that final week became a celebration of his life that he could also be a part of.
“We spent our evenings watching old home videos as a family. We listened to his favourite songs and spoke openly about what we mean to each other. It seemed therapeutic for my father to spend these last days with people who were important to him in his life,” she says.
Since 2016, the number of Canadians who have received MAID has increased.
A Statistic Canada report finds that in 2017, Health Canada reported 2,838 medically assisted deaths. In 2018, the number of deaths increased to 4,478. By 2020, there were 7,383.
Although patients may apply for MAID, there is no guarantee that they will receive it. In fact, three-quarters of applicants received MAID in 2019 and 2020, but 6.9 per cent of applicants were denied due to the eligibility criteria.
Knowing her dad qualified for MAID helped alleviate any anxieties he had and put his mind at ease, Betts says.
“He knew he would not have to ride the course of ALS out to the bitter end. He could choose when he had had enough. He had some control over a completely helpless situation.”
And although Betts and her family would have loved to spend more time with Norman, she says that the process of MAID offered her father a peaceful end to his life.
“Death is something we will all face. So many people are taken from life suddenly and are never given a chance for farewells or they are so unwell by the time the end is near that the pain and discomfort overpower everything else. MAID was a gift for my father, given his condition, a gift to have a choice over his ending.”
Some takeaways
As both a health-care practitioner and a family member of a MAID recipient, Betts hopes future recipients and their families will have access to more information about the process of organ donation.
"More communication between the patient and the transplant coordinator could potentially help increase the amount of organs donated. If my father had been told that by waiting a few days or weeks he could have donate more, he likely would have jumped at the opportunity."
According to BC Transplant, it’s difficult to explicitly state what will be donated.
“It’s important to note that we can only tell a patient what is intended to be recovered for transplant. While testing is performed in advance to determine organ suitability for transplant, there is always a chance that when the surgical recovery team actually sees the organ(s) during the surgery, they realize they may not be appropriate for transplant,” the organization said in an email statement.
BC Transplant adds that donation is second to the MAID process, even if the patient wishes to do more.
Betts’ father donated both kidneys, lungs and pancreatic islet cells.
But Betts says that not being able to donate more was her father’s only disappointment — especially his heart.
“To him, whether medical intervention stopped his heart before donation through drugs, which is the current practice, or his heart stopped through the act of acquiring it for donation, made no difference. What he wanted was a chance for his heart to be used.”
In response to why MAID patients can't donate their hearts, BC Transplant said that's “due to the pathway of donation after MAID — donation after circulatory death (DCD) — the heart sustains injury in the dying process and is not possible to be used. There is nowhere in Canada where it is currently possible to donate the heart after MAID.”
While it’s not a donation that is currently possible, Betts hopes that can change soon.
“Each time we get close to the edges of that line [of ethical boundaries], there is great debate and great fear around the unknown. My father was so incredibly thankful to know that MAID and organ donation were an option for him. We’ve come so far in this area of health care, but there is still so much room for growth."
