In 2023, Canadians will be able to apply for a medically assisted death, also known in the country as medical assistance in dying (MAID), if they are suffering from mental health problems as their sole condition. Years after assisted dying legislation was first approved, it has been expanded to include those who do not have a “reasonably foreseeable” death. The recent changes have caused concerns for rights groups and mental health advocates in Canada, one of just a few countries where euthanasia is legal. The Take asks what is at stake and looks at the taboos that still remain around conversations about death.
In this episode:
- Bill Kaufmann (@BillKaufmannjrn), Reporter, Calgary Herald and Calgary Sun
- Lori Weber, Children’s book author, “The Ribbon Leaf”
- Cheryl Romaire (@CherylRomaire), healthcare and MAID advocate
- Mark Henick (@markhenick), Author, “So-Called Normal: A Memoir of Family, Depression and Resilience”
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If you or someone you know is at risk of suicide, these organisations may be able to help.
Full episode transcript:
Halla Mohieddeen: Before we get started, this episode has references to death, assisted suicide and suicide.
[THEME MUSIC IN]
Cheryl Romaine: Imagine the worst pain of your life, the moment where you would dial 9-1-1. The moment right before that, and I was left at that pain level and sent home that way.
Halla Mohieddeen: Cheryl Romaire is a Canadian who was diagnosed with a disease that’s kept her homebound for the last three years.
Cheryl Romaine: That’s what started my MAID request. I knew that I couldn’t live like that. My son couldn’t watch me live like that.
Halla Mohieddeen: Canada has some of the most liberal euthanasia laws in the world. And the laws around medical assistance in dying, known in Canada as MAID, have recently been expanded further.
Newsreel: Those who aren’t near their natural death now have the right to seek medical assistance in dying.
Halla Mohieddeen: And although it’s given people like Cheryl more choices, it’s not been welcomed by everyone. We ask what’s changed, and what’s at stake for those facing this decision in Canada.
[THEME MUSIC PLAYING]
Halla Mohieddeen: I’m Halla Mohieddeen and this is The Take.
Halla Mohieddeen: Euthanasia has always been a controversial topic. Talking about death is still taboo to many around the world. But in Canada, one of seven countries where it’s legal, the conversations have been ongoing for quite some time.
Bill Kaufmann: I’m Bill Kaufman. I’m a reporter with the Calgary Herald and Calgary Sun newspapers.
Halla Mohieddeen: We’re talking today about medical assistance in dying or “MAID”, as it’s sometimes referred to in Canada. This isn’t something that’s available in a lot of countries worldwide. Can you just explain to our listeners what exactly is MAID?
Bill Kaufmann: MAID is an acronym for medical assistance in dying and what that consists of is a legislation that allows a process whereby people can choose to end their lives in times of suffering. And they do this by having a physician attend them at a designated time to administer a toxic cocktail of sedatives.
Halla Mohieddeen: What brought it in?
Bill Kaufmann: There was considerable pressure from some people in Canada for a more dignified, compassionate form of dying. There was a lot of concern over the fact that accessing this kind of euthanasia was only available through a court order, and that was seen as very cumbersome and not sensitive to the needs of people who were suffering. It began with some level of controversy. It’s all very new. It’s all very sensitive and emotional.
Halla Mohieddeen: OK. So there was certainly demand for this measure to be brought in. There was a lobby for it, yes?
Bill Kaufmann: Oh, yes. There are a number of groups that are continuously in consultation with the federal government to either maintain this process and to also expand the eligibility for it. Obviously, there’s also opposition to it with pro-life groups with groups representing the disabled, who are concerned that this could be used or is being used inappropriately to end the lives of certain vulnerable people, and vulnerable populations.
Halla Mohieddeen: Now, you’ve covered the story about the recent changes in Canada’s law that makes the assisted dying more widely available. Can you just talk to us a little bit about those changes?
Bill Kaufmann: Now when it was first introduced in 2016 the main criteria for this was that those eligible for it their death had to be foreseeable. After review that has been expanded now to include those who are suffering, but whose death is not foreseeable. It’s still only available under certain criteria and certain conditions, and certain safeguards. It will be further expanded to those suffering from mental illnesses solely.
Halla Mohieddeen: That’s not happening until 2023. But it’s the recent change in the law that helped Cheryl, who you heard from at the beginning of episode. She’s had a number of health issues since 2017, and it took the doctors a while to diagnose her.
Cheryl Romaine: I got sick with what we now know is a couple of autoimmune diseases. I have adhesive arachnoiditis and non-radiographic axial spondyloarthritis, which is a chronic inflammation of the spine, but it’s caused by an autoimmune process. I didn’t get my diagnosis until 2019.
Halla Mohieddeen: And her quality of life has deteriorated dramatically ever since.
Cheryl Romaine: I went from being a single parent, high functioning with a job. I could go out and get groceries all on my own. For about the last three years, I’ve been almost entirely homebound, except for going to appointments and that’s all I do. My world has become so much smaller than it used to be.
Halla Mohieddeen: Her doctors prescribed various treatments. Cheryl says she tried every single one.
Cheryl Romaine: I have done almost every treatment you can possibly think of. Everything, all the injections, corticosteroid injections that people get, the epidurals, nerve root blocks, branch blocks, radio-frequency ablation of the nerves.
Halla Mohieddeen: She applied for MAID in 2019.
Cheryl Romaine: Because I didn’t have a reasonably foreseeable natural death, I was denied.
Halla Mohieddeen: Thanks to the expansion of MAID that widens the programme to those whose death isn’t reasonably foreseeable the outcome was different for Cheryl when she reapplied.
Cheryl Romaine: So that’s when I wrote a senate submission for Bill C-7, that’s the part of the law that removed the reasonably foreseeable natural death requirement. The second time I requested MAID, I was approved.
Halla Mohieddeen: Cheryl’s trying a new treatment that is working for now, but she still has the option for MAID when that changes. Someone who has seen a loved one go through with the entire process is Lori Weber a children’s book author from Quebec. Her husband, Ron passed away a few months ago. He’d faced a long battle to have a medically assisted death.
Lori Weber: He was a retired English teacher. He was a very humble and quiet man. He didn’t like to complain too much even with the incredible amount of pain that he endured.
Halla Mohieddeen: Can you just tell us a little bit about his condition?
Lori Weber: Yes, it’s called ankylosing spondylitis. It’s an autoimmune disease, and its spinal degeneration and a fusion of the lower spine and it leads to inflammations all over the body.
Halla Mohieddeen: And is it treatable?
Lori Weber: He was treated for back pain when he was younger, and in fact, he was wearing a back brace when I first met him. But then his ankylosing spondylitis didn’t progress in a typical fashion. He had a very hard time convincing his GP that he actually had ankylosing spondylitis. And that delayed treatment for another few years.
Halla Mohieddeen: That must have been massively frustrating. Did he get the sense he was being dismissed with just regular back pain that 50 year olds tend to get?
Lori Weber: Bingo, exactly that everybody over 50 has back pain. It was a good five, six years before the doctor finally agreed to send Ron for the test.
Halla Mohieddeen: Lori told me Ron even had trouble convincing his doctors about the severity of his pain. She said he’d progressed onto stronger drugs to cope in his final months. But, he still had difficulty accessing the treatment he needed to make his life bearable.
Lori Weber: He was asked to see a pain doctor at the pain clinic downtown, and was told nine-months-to-a-year waiting list. So yeah, our healthcare system – it’s undergoing a little bit of a crisis at the moment, especially post-COVID. The pain doctor that he did speak to suggested that he read a book called, Eat Dirt, which was about how to control your inflammation through diet. And we just had to laugh at that one. I went and got it for him. He resisted as long as possible, but towards the end, he was using the oxy in particular at night just to be able to sleep and I would say for the last two years he barely was seeing doctors any more. He had just given up.
Lori Weber: And the doctors also didn’t support his application for MAID, which was then the next huge frustration he had to deal with.
Halla Mohieddeen: When did he feel he needed to start thinking about medical assistance in dying?
Lori Weber: When the law changed in 2021 with the new bill, which was for people whose death was not in the foreseeable future. In other words, people with chronic illnesses. It was in, close to, November of 2021 that he told me that he had made the decision that he was gonna start getting the ball rolling with the application process for this. So it wasn’t a total shock to me because it was something he had talked about. There was no other option. There was either MAID or many more years of more suffering and deterioration. I firmly believe that those were the only two options.
Halla Mohieddeen: That was the beginning of Ron’s MAID journey. Lori and her family were able to be with him until the very end.
Lori Weber: It’s not an easy procedure to witness. It takes much longer than you think. It’s about 23 minutes from start to finish.
Halla Mohieddeen: Twenty-three minutes. That’s the time Lori says it took for her husband’s assisted death. But to reach that stage, it took a lot longer. More on that and the concerns around safeguarding after the break.
Halla Mohieddeen: As things stand now in Canada, adults who don’t have a terminal illness can apply for MAID. In 2023, it will become available to people who have no illnesses other than mental health. And that’s raised alarm bells with mental health advocates. While there are safeguarding measures in place, some say it’s not enough.
Halla Mohieddeen: Here’s Bill Kaufmann again, the journalist who’s covered the story in Calgary.
Bill Kaufmann: The request has to be signed by one independent witness. And two independent practitioners have to confirm that the eligibility is met. There’s a minimum 90 days assessment from the after request. And the applicants have to be told of the counselling available supports and alternatives such as palliative care and there has to be the opportunity to withdraw that consent to death right up until the time it’s about to be delivered.
Halla Mohieddeen: So, it’s not just one doctor who makes this decision. It has to get the sign-off by at least two doctors.
Bill Kaufmann: Two doctors and two independent practitioners have to confirm the eligibility.
Halla Mohieddeen: And how does that apply to mental illness because this expansion seems rather unusual. What are the criteria under this expanded programme for accessing MAID?
Bill Kaufmann: The person who is applying for this has to be of sound enough mind to make this application, that has to be signed off on by two independent practitioners and the requests signed by at least one independent witness.
Halla Mohieddeen: But there are concerns these safeguards should be more specific to protect people with mental health issues.
Bill Kaufmann: A lot of this stuff is being overly vague, particularly when it pertains to mental illness that perhaps, how can they consent? How can it be assured that they’re of sound mind?
Halla Mohieddeen: And this is what people who’ve experienced mental health illnesses are worried about.
Mark Henick: My name is Mark Henrick. I’m a mental health advocate based in Toronto.
Mark Henick: I’ve opened up very publicly in Canadian media the fact that it largely ignores the social determinants of health, the reason for which many people request MAID to begin with. So I’m of the view that this legislation actually reverses the burden that it pins it on the individual, that their brain is broken, that it’s their fault that they can’t recover, when really the system isn’t doing enough to actually help them recover. You think you want to die, you think you’re hopeless and helpless. That is the nature of too many mental health problems and illnesses. It’s impossible to tell if somebody is, is requesting MAID for mental illness or if they’re suicidal.
Halla Mohieddeen: Mark told us he thinks there isn’t enough support available for people to make a full recovery.
Mark Henick: People don’t fail treatments, treatments fail people, not the other way around. Recovery is likely when people get the help that they need, where and when they need it. My opposition to extending MAID for mental illness alone, doesn’t discount the fact that the suffering can indeed be grievous. It doesn’t discount the fact that people really want to die. I think both of those things are true. However, I think that we need to take into broader account why they’re suffering in the first place.
Halla Mohieddeen: Critics are also concerned that expanding access to MAID won’t stop with mental health. In fact, conversations are under way to extend medical assistance in dying to children. I asked Bill Kauffman about this possibility
Bill Kaufmann: Yeah, in Canada, it’s not yet being offered, but it’s on it’s in it’s the next debate. It’s under consideration now. The proponents of this say, though young, there are many minors, teens who are of, who are mature enough, who are of sufficient intellect to appropriately request and consent to this. They’re already able to reject some forms of medical intervention. So this would be just a matter of inclusion. Obviously, there’s pushback to this and the opponents are saying, “Hey, this is, you see what we’re saying? This just confirms our worst fears about the undue expansion of this programme.”
Halla Mohieddeen: However, amid all the talk of it getting easier to get medical assistance in dying, getting approval for MAID isn’t as straightforward as you might think. Lori’s late husband Ron struggled to get treatment, but those challenges also extended to accessing the MAID programme.
Lori Weber: You need support from a medical person for this initial application. And that’s where Ron’s GP who had failed him so miserably with the diagnosis at first said he would support Ron’s application and then went, Ron went back to him with the actual paper. This doctor had changed his mind and said that he no longer wanted to support him. He felt that he hadn’t tried everything. So then, when then Ron went to his rheumatologist and the rheumatologist was totally against MAID. The pain doctor, I think, also had turned Ron down and so Ron put in a letter of complaint with the Quebec chapter of Dying With Dignity Canada. They suggested that he go to the local health board, which is what he did.
Halla Mohieddeen: And it was the local health board that sent two nurse practitioners to Ron. They helped him with the application – that’s the first step. Then he could go on to meet the doctors who’d be making the final decision.
Lori Weber: There was no question in their mind that he was a perfect candidate. So that was a very hard and shocking moment for me, because I think in the back of my mind, I still had my doubts that he qualified for this.
Halla Mohieddeen: I guess you would feel it is better this way when you have control, when you’re able to take control of your destiny. Just talk to us a bit about how important that, that is not just for how it was for your husband, but for you, as a family, to know that you can control something which previously had been controlling you.
Lori Weber: Gosh! It’s everything, isn’t it? To have control over your own life and your own destiny and not be at the mercy of a system, to be able to say this is what we need as a family. Because we were all suffering along with him for many years.
Halla Mohieddeen: Having control over your destiny, or at least the option was also transformative for Cheryl. She’s currently undergoing a new treatment, but being approved for MAID has given her a sense of relief. So that if her treatment doesn’t work, she still has options, she has control and with it a sense of comfort.
Cheryl Romaine: I can just hold onto that approval and carry it in my back pocket. So I know now that I will never be left again in a flare like I was before. I didn’t even realise how much the fear of being left at my crisis pain level was affecting me and then when I got the approval it’s like that just lifted off my chest and I could breathe. That’s really how I felt. And at the same time though, I felt a bit guilty at feeling that relief because I was going to hurt my family. That part is hard.
Halla Mohieddeen: And it is hard to talk about death, but it’s a conversation that’s happening more.
Halla Mohieddeen: I put that to Lori.
Halla Mohieddeen: It’s certainly something that’s being talked a lot about more but death is still really, we’re talking in 2022. It’s still a really taboo subject. Do you think that’s healthy or should we be talking more about this kind of thing?
Lori Weber: After going through this, I’ve come to the conclusion we really need to start talking about death a lot more. I write books for children, and my mission now is gonna be to write, you know, books that help even children. Children need to learn that death is part of life because people don’t even know what to say when someone’s grieving. I think it stems from what you just mentioned, that discomfort with death. That death doesn’t still exist, but I mean, if the last few years have taught us anything, it’s taught us, you know, that death does exist and we do need to learn how to talk about it.
Lori Weber: Ron just saw death as a natural part of his life. He said, “You know, everyone’s gonna die. I’m just getting to choose when I die.” He was hostage, 100 percent hostage to his diseases. So to have this control at the end, I think was so empowering to him. And I’m telling you that he went happy.
Halla Mohieddeen: It’s a conversation journalist Bill Kauffman agrees we have to have.
Halla Mohieddeen: Do you think there’s also a responsibility on, on society itself, in the way that we consider life and death and that we should start talking earlier about how we manage your death. And is that a conversation that, that in Canada, is perhaps more advanced than it is in other parts of the world?
Bill Kaufmann: Absolutely. You know, discussing death is still a difficult thing. There’s still plenty of taboos around that. It needs to be part of the discussion because that’s what drives, that’s ultimately what should drive, the laws governing it. I would say that we need to be open to all voices on this very open because I don’t think there’s really, what I’ve seen, there’s really an incorrect, or wholly incorrect or wrong side on this, I think there are some real valid concerns over the need for safeguards, possibly stronger safeguards, but at the same time, there’s a need for dignity and death.
Halla Mohieddeen: And that’s The Take.
Halla Mohieddeen: This episode was produced by Ruby Zaman with Chloe K Li, Amy Walters, Alexandra Locke, Ashish Malhotra, Negin Owliaei and me, Halla Mohieddeen. Alex Roldan is our sound designer, Aya Elmileik and Adam Abou-Gad are our engagement producers. Ney Alvarez is our head of audio.
This episode was produced by Ruby Zaman with our host, Halla Mohieddeen. It was fact-checked by Chloe K. Li.
Our production team includes Chloe K. Li, Alexandra Locke, Ashish Malhotra, Negin Owliaei, Amy Walters, and Ruby Zaman. Our sound designer is Alex Roldan. Aya Elmileik and Adam Abou-Gad are our engagement producers. Ney Alvarez is Al Jazeera’s head of audio.