Under your skin:

Exploring the facts and myths behind organ donations

By Albert Park, Features Editor -- September 20, 2016

(Justine Touchon / McGill Tribune)

A registered organ donor can save up to eight lives and drastically improve the lives of over 75 people. This statistic—while impressive—does not tell the entire story. It does not reveal the number of hours that a kidney recipient would be able to spend at home with their family instead of on a hospital bed. It cannot measure the amount of happiness that a parent might feel in seeing their child, who has just received new lungs, run for the first time. It cannot illuminate the sense of hope and gratitude that one might experience in holding their partner’s hand after undergoing a successful heart transplant operation. Indeed, it is overwhelming to consider the full implications behind these numbers.

I remember the day when I first heard this statistic; I was in grade ten. I had excitedly stepped into my favourite class in high school—science. Immediately, I noticed the serious expression on my teacher’s face, a countenance that was hard to spot on someone with the reputation of being the most laid back teacher in my school. I recall word for word what he said to the class before his lesson that day.

“We learn a lot of important things in this class: Optics, cells, chemical reactions, the periodic table. These are all very important topics, yes,” he said. “But, I can guarantee that no other piece of information you receive from this class will have a greater impact on your life and society than what you are about to learn in the next few days.”

What followed was a series of lessons about organ donation. It was the first time I was formally educated on the topic. Naturally, we covered some of the science behind it, but my teacher made great effort to emphasize the need for awareness about organ donations. He showed us documentaries, wrote down statistics, and engaged us in conversation about the lives of the people on the waiting list for organs in Canada.

Since then, I’ve tried my best to stay up to date on news about organ donations. Some facts are reassuring; for example, organ transplantation rates have risen by 23 per cent over the last decade in Canada. Yet, this figure cannot change the reality that in 2014, there were 4,573 Canadians on the waiting list for an organ donation. Out of that group, 300 people died while waiting for an organ that year.

The struggle to meet transplant demands in Canada can be accounted for by the insufficient rate of successful organ donations in the country. Quebec is relatively successful when it comes to facilitating organ donation. The province had the highest deceased organ donor conversion rate in Canada in 2014, with 21 per cent of eligible deceased patients donating their organs However, according to Transplant Quebec, barely one per cent of all patients that pass away in the hospital end up donating organs. In 2013, about 15 people out of a million Canadians ultimately became organ donors, which was significantly lower than countries such as the United States, where approximately 26 people out of a million became donors.

Experts in medicine and the humanities has expended significant effort to identify the factors behind Canada’s low organ donation rate. According to Matthew Dankner, an MD-PhD student at McGill, who is a co-founder and co-president of the McGill Students for Organ Donation Awareness (MSODA) group, there are two primary contributing factors to the issue.

“Our group has identified two main reasons [for the low number of organ donations in Canada],” he explained. “Most people aren’t [registered] organ donors, they don’t know about it, [or] they don’t sign the card [....] But what we’ve come to realize over our three years [running MSODA], is that what is arguably even a bigger issue is that health professionals are not adequately trained in [organ transplantation].”

Dankner’s first point about the lack of awareness and preparedness regarding organ donation is an issue that everyday Canadians can do more to alleviate. For Dankner, the decision to become a donor came naturally. Therefore, he believes that awareness is the most effective way to increase organ donation rates.

“To me [organ donation] is sort of a common sense thing [....] Once you are gone you don’t need your [organs] anymore, and there are people that desperately need them to live,” he said. “People with families and their own lives.”

Alissa Rutman, a graduate student in the Department of Experimental Surgery at McGill, co-founder and co-president of MSODA alongside Dankner, echoes similar sentiments regarding the reasons behind why people choose to become organ donors.

“If you can save a life after death, then why wouldn’t you?” she asked. “In my head [it’s like] saving eight lives by signing a [sticker.]”

Matthew Dankner and Alissa Rutman tabling for MSODA. (Brian Tran / MSODA)

In an email to the McGill Tribune, Jeremy Rutman, a second year student in accounting at Concordia's John Molson School of Business, lent his perspective about organ donations, as an individual who has received an organ. In 2012, Rutman received a liver transplant after being diagnosed with Primary Schlerosing Cholangitis.

“Before my transplant, I took a lot for granted,” he wrote. “I think now that I’ve been given a second chance, I know how important it is to cherish the little things in life and make the most of them. [Organ donors] have no idea how many lives [they] can and will be impacting in the long-run. I’ve been [gifted] with a second chance at life because of one person. Think about how much of a difference [an organ donor] can have on not only one person’s life, but so many.”

I think now that I’ve been given a second chance, I know how important it is to cherish the little things in life and make the most of them. [Organ donors] have no idea how many lives [they] can and will be impacting in the long-run. I’ve been [gifted] with a second chance at life because of one person. Think about how much of a difference [an organ donor] can have on not only one person’s life, but so many.

The desire to help others is a great factor behind why people register to become organ donors. According to the Canadian Transplant Society, 90 per cent of Canadians support organ and tissue donation; however, less than 20 per cent have actually made plans to donate. Cementing one’s decision to donate one’s organ requires more than simply registering with the organ donor registry or signing the donor sticker. Dankner stressed the importance of talking about your wishes with family members, recalling the conversations he had with his parents following his decision.

“I talked about it with my family, and that’s very important, because technically, signing the sticker [on the back of your provincial Health Insurance Card] is not enough,” he said. “If something were to happen to me, and the doctors [were to] ask my parents if [I wanted to be an organ donor], they would need to say yes. You don’t even need to technically sign your [sticker], you just need your next of kin to know your views [in order to become an organ donor]. Whoever is your surrogate to make decisions can consent for you [....My parents were] supportive of my decisions. Neither of them were organ donors at the time, but over the years, my mom, my dad, and my brother have all signed on to be donors."

This conversation is not so simple for everyone. Following my education about organ donation in high school, I made up my mind to become a donor. Donning a green ribbon, I marched home and announced my intentions to my mother, Meekyung Choi. To my surprise, she shut down the conversation almost immediately, claiming that I was too young to start thinking about such things.

Recently, I approached the topic with her again, and she finally elaborated on her reluctance to discuss it with me six years ago.

“I just felt you were too young to start thinking something about what comes after death,” she said. “I don’t think you should start planning for such negative events ahead of time. No parent wants to talk about their child’s mortality.”

In spite of this, I was surprised to find that she fully supported the concept of donating one’s organs.

“Of course I believe [organ donation] is a good thing,” she said. “If you can give someone else hope, and serve a purpose even after death, I think that is a very positive thing. I fully intend to donate my organs.”

If you can give someone else hope, and serve a purpose even after death, I think that is a very positive thing. I fully intend to donate my organs.

According to Alissa Rutman, my mother’s reason for avoiding the topic—hesitance to talk about mortality—is a common barrier to creating open dialogue about organ donations.

“Honestly, people are sometimes just scared to talk about death,” she said. “They don’t want to think about what comes after [death].”

Another significant reason for people’s reluctance to register as organ donors is because of their mistrust of doctors and the system. A common concern about donations is that registered organ donors will not be given the the best possible care by doctors, or will even be declared dead prematurely due to the high demand for organs. Dankner claims that these fears are only myths.

“As a medical student, I know that doctors are not [going to prematurely declare your death] just because you are an organ donor,” he said. ”Some people think that if you are an organ donor, [doctors] will not treat you as well. But the thing is that those conversations [about donating organs] are only had [after your death] and no one even knows if you signed your card or not prior to that. It all comes down to a lack of education about the [organ donation and allocation] process.”

Steps are being taken to address the shortfall of education on the clinical side as well. This year, Alexandra Fletcher and Bing Yu, two second year students in the Faculty of Medicine at McGilll and members of the International Federation of Medical Student Associations-Quebec, worked to introduce a course on organ donation into the undergraduate medical curriculum across Quebec and Canada. MSODA supported the initiative by attending the group’s meetings, as well as providing feedback on their proposals and plans.

Ultimately, the challenge of increasing the organ donor rate boils down to finding the most effective ways to not only raise awareness on the matter, but to also educate everyday people about the system. Rutman explained that this is one of goals of the MSODA, which is a Students’ Society of McGill University group affiliated with Transplant Quebec.

“We’ve had some educational seminars about organ donations in general, and we’ve set up booths around campus which facilitated distribution of medicare stickers,” she said. “Handing [the stickers] out is very important. A lot of people never end up making plans to donate their organs because it’s hard for them to get access to the correct information.”

In particular, MSODA has made great efforts to collaborate with and support Chaîne de vie, a Quebec-wide program which educates high school students about organ donations through second-language English classes. The organization came to life when Kristopher Knowles, a secondary school student from Ontario who was on the waiting list for a liver transplant, visited an English class in Quebec to give a testimony about the shortage of organs and being on the waiting list. Dankner spoke about Défi Chaîne de vie, an event ran by Chaîne de vie, in which MSODA plays a large part in organizing.

“[This event] is a walk up [Mount Royal] with both organ donors and organ recipients attending,” he explained. “The point [of the climb] is that it symbolizes the hardship that waiting for an organ and ultimately undergoing a transplant operation entails.”

Last year's Défi Chaîne de vie. (Brian Tran / MSODA)

This year, Défi Chaîne de vie will be held on Oct. 15, 2016. The purpose of the event is to spread awareness about organ donations. Jeremy Rutman indicated that he believes thorough education is the best way to encourage more people to register to become organ donors.

“Nowadays, people are scared of the unknown, and rightfully so,” he wrote. “With so much information accessible, why should it be such a question mark? Everyone should be provided with the answers to the hard questions, which could influence them into becoming organ donors.”

While education is one thing, Alissa Rutman believes that having an honest conversation about the subject with others is the most conducive way for everyday people to help support the mandate of groups like MSODA and increase the rate of organ donations in Canada.

“[I would] encourage talking about organ donation with friends and family,” she said. “You don’t have to push anyone to register. Just an open conversation about the topic is helpful to everyone [....] Whether you agree with the idea [of organ donations] or not.”

In his email, Jeremy Rutman also mentioned a similar belief.

“If you’re not willing to become an organ donor, whether it be personal reasons, or any other reasons, I think it’s important to talk about it,” he wrote. “Talk with someone you know who has received an organ donation or with someone whose loved one has received a donation. Understand how they cherish it and understand how much it can impact a group of people."

An earlier version of this article incorrectly named Jeremy Rutman as James Rutman. In addition, the earlier version failed to mention that Matthew Dankner, alongside Alissa Rutman, is a co-founder and current co-president of McGill Students for Organ Donation Awareness. Furthermore, the earlier version was unclear in revealing that MSODA not only supports the Chaîne de vie program, but also actively collaborates with them. Finally, the earlier version inaccurately quoted Alissa Rutman, stating that she thinks many people do not donate organs because they don’t have access to donor stickers. In fact, she said it’s because they do not have access to correct information. The McGill Tribune regrets these errors.