On the Monday show

“I die when I run out of money”

For some Canadians with disabilities and chronic illnesses, the government has made it easier to access assisted death than the supports they need to live

By now, you’re probably familiar with the concept of medical assistance in dying or “MAID” — the right for people suffering from terminal illness to choose to end their lives with the help of doctors. If you are in pain that cannot be relieved, if your quality of life is unbearable, the law provides you with the choice of death.

But what if your illness isn’t terminal? And what if your pain and suffering could be manageable, if you only had enough money? And what happens if you don’t?

In Canada right now, there are people choosing medically-assisted death, not because their illnesses are killing them or the pain is unbearable, but because they can’t afford the cost of managing that pain and getting the care they need to live with dignity.

Recent changes to Canada’s assisted-death laws now allow people who aren’t terminal to seek MAID.

On this week’s CANADALAND, reporter Cherise Seucharan introduces you to one of them, a woman able to live with her disease until her money runs out, at which point she says she’ll be literally priced out of life.

“Madeline” is in her 50s — “Half a century, baby, and counting” — and when reached at home in Vancouver earlier this month, she says she’s just a few weeks away from dying.

“I am focusing on Halloween,” she says, “because I love Halloween. I get to stay alive through Halloween.”

She goes by a pseudonym when talking publicly about her illness, because she worries the stress of being identified would cause her health to deteriorate further.

When her remaining money to treat her chronic illness runs out, she says she’ll be making a call to a doctor to administer medically-assisted death. She calls this countdown her “death clock,” and by the time you read this, that clock may be nearly out of time.

People choosing to have a medically-assisted death when they would much rather live is not something that is supposed to happen.

But Madeline isn’t the only one. Many have been raising the alarm about how it’s now easier for people with disabilities and chronic illnesses to access assisted death than the support they need to live.

Just this past summer, Dallon Johnstone, a 34-year-old from Victoria, chose MAID after years of suffering from complex regional pain disorder. He documented his journey to over 35,000 followers on TikTok.

@dallonjohnstonedecided to donate my organs July 22nd when I’m laid to rest #hospital #organdonor #canada #family #complexregionalpainsyndrome♬ Mood (feat. iann dior) – 24KGoldn

According to the legislators who put Canada’s original MAID laws in place, the option to die was originally intended for those at the end stages of a terminal illness, to help alleviate suffering. Deaths had to be “reasonably foreseeable.”

But last year, a change was proposed, after two people with severe disabilities, but not near the ends of their lives, won a case at Quebec’s Superior Court granting them the right to die on their own terms.

That led to the federal government’s Bill C-7, An Act to amend the Criminal Code (medical assistance in dying), to allow Canadians to receive MAID even if their deaths aren’t foreseeable.

“This legislation,” Justice Minister David Lametti said last fall, “will prioritize the individual autonomy of Canadians who are suffering to choose a peaceful death if they determine that their situation is no longer tolerable to them, regardless of proximity to death.”

After much debate, the bill became law this past March, with some key safeguards — notably that there should be a minimum 90-day waiting period following the first assessment of a MAID request.

But for many people, tolerance of their conditions involves care that costs money, such as expensive treatments, assistive devices, or access to home care. The bill did not take into consideration the people who would choose death not because their conditions couldn’t be managed through treatments, therapies, or support — but because they can’t afford those supports. In practice, the law now offers these people death as a viable solution to pain and suffering.

Madeline is one.

“There’s such large-scale discrimination built into the lack of support”

She lives with a chronic illness called myalgic encephalomyelitis, or ME, which affects multiple systems in the body and is classified as a type of neurological disorder with symptoms like extreme fatigue, joint pain, cognitive difficulties, and more. It’s a result of post-viral fatigue syndrome, which is sometimes triggered by a serious viral infection. Madeline’s was triggered when she got mono as a child.

Some experts now suggest that long Covid might be the same as ME or have a similar underlying mechanism.

When she was in her 30s, still managing chronic illness but pursuing an acting career in Vancouver, she got mono again. And that led to a domino effect of worsening symptoms and new illnesses that doctors struggled to treat, leaving her unable to get out of bed or even breathe comfortably.

“After that, all the symptoms I had before became amplified dramatically. Colds and flus, I caught them a lot before, but they were usually a couple of weeks long,” she says. “After the second round of mono, they were like three, three and a half months at full force, scaring the hell out of everybody.”

There’s no standard treatment for ME, and no cure. Like many chronic illnesses, research into the disease is underfunded, and so it is not only misunderstood by doctors, but the treatments that are available are largely experimental and not covered by provincial health insurance plans.

Largely left on her own to deal with her health issues, Madeline became unable to work or pursue her acting career, and barely able to leave the house. She relied on the provincial disability benefit, which in BC is a mere $1,358.50 per month, raised only recently from $1,183. Notably, that amount is also less than the $2,000 CERB payments to healthy people, for which she didn’t qualify.

Desperate for solutions, she eventually found a naturopath who took her seriously, and they found that a mix of intravenous vitamins helped her get some of her energy back. The injections give her a couple hours per day when she’s able to be active, what she calls her “energy envelope.”

But because these are naturopathic treatments, and she’s needed more advanced ones over time, the costs have added up and now work out to over $100,000 per year.

While there is debate over whether naturopathic medicine should be covered by provincial healthcare, there simply aren’t many other treatment options for Madeline’s condition, and none that have been effective at managing pain and preventing further decline.

“I’m at a place of extreme deterioration, and they’re having to work some of these things in very unusual ways in an attempt to not have me die,” she says.

She’s asked for meetings with her representatives in the provincial and federal governments, anyone she could talk to about the impossibility of living with her illness on so little money. But nothing much has changed.

“I look at GoFundMes for cats getting fulfilled. It’s like, I’ll put ears and a tail on. I’ll do it.”

“The system is acting like you can live on a thousand dollars less than a healthy person. And I’ve now come to the conclusion that this is the amount of money that a healthy person becomes disabled on,” she says.

“There’s been just such a large-scale discrimination built into the lack of support.”

Recently, Madeline’s condition deteriorated to the point that her friends made a GoFundMe for her, and over the past few months, it’s been crucial in helping her afford the intravenous treatments. She was also the subject of a podcast series, I Am Madeline, putting a spotlight on her and her condition.

But the funds are going to run out soon.

And when they do run out, she says she’ll make a call to her MAID doctor to set up a time to die. Her fear is that if she waits too long, she will deteriorate to a point where she is no longer able to consent to medical care.

“I don’t have a choice if help doesn’t come, if the government doesn’t start giving me supports that I need,” she says.

“And you’ll have to forgive me, because I love cats, but I look at GoFundMes for cats getting fulfilled. It’s like, I’ll put ears and a tail on. I’ll do it.”

When Parliament was debating Bill C-7 in the fall of 2020, the government was warned that situations like this would happen. Doctors, palliative care specialists, disability experts, and individuals living with disabilities all testified to the parliamentary committee, saying that given the limited financial resources and access to care that many people with disabilities have, the bill would effectively expand the grounds for euthanasia.

Over one third of disabled people in Canada are living below the poverty line, according to recent statistics, and BC’s disability benefit happens to be among Canada’s most generous.

Ramona Coelho, an Ontario-based physician, advised Parliament’s Justice committee last November that she takes care of marginalized patients who are “constantly fighting for things like housing, resources in the home, social support, pain control, access to meds that they can’t afford.”

As such, “There are many barriers that lead patients to have death wishes every day.” ​​

The following week, Roger Foley, 45-year-old man living with a severe neurodegenerative disease, told the committee he had been “coerced into assisted death by abuse, neglect, lack of care, and threats. For example, at a time when I was advocating for assistance to live and self-directed home care, the hospital ethicist and nurses were trying to coerce me into an assisted death, by threatening to charge me $1,800 per day or force-discharge me without the care I need to live.”

A Zoom-based “Disability Filibuster” in protest of the bill was held last March, just days before the final votes on the legislation. The virtual filibuster went on for over eight hours, featuring disabled people and allies arguing that the bill would encourage and hasten the deaths of a large segment of people with disabilities in Canada.

Despite the resistance, the bill did pass, with an amendment requiring the government to address some concerns by collecting race-based data about who requests and receives assisted dying in the first year following. Parliament also resolved to review the impact of the bill soon after it became law, to find out if disabled and ill people would in fact feel forced to take the MAID route instead of receiving real support and resources.

“That I’m facing death for something that can be managed is bloody ridiculous”

While there is no current data available on how many Canadians have sought MAID due to poverty or lack of access to care, Dr. Sonu Gaind, chief of psychiatry and medical director of mental health at Humber River Hospital in Toronto, said that he has significant concerns.

Gaind, who has consulted on MAID legislation, says that he has seen MAID being requested by people other than those the changes were intended for.

“For marginalized populations — who are struggling with poverty, with loneliness, with access to proper medical care — for those marginalized populations, we’re saying we will provide you death that’s easier, we’ll provide you death with dignity. But society has never given them a chance to live with dignity,” he says.

Gaind says that, while it was likely unintentional, the MAID legislation also ends up costing the government less than actually providing social and medical supports for people with disabilities and chronic illnesses.

He’s also concerned about another pending change, which would further expand access to MAID in 2023 to people whose only condition is a mental illness, such as depression. He fears that we’ll see two different populations requesting it: “One, the more privileged population, who does now receive greater autonomy to die on their terms. But that also will come with a high cost, and that will be of more marginalized populations seeking assisted-dying for social suffering, because society couldn’t or wouldn’t help them in other ways.”

Which brings us back to Madeline.

“I’m trying really hard not to freak out,” she says. “Because, I mean, I’m grateful that MAID exists; it beats the hell out of a prolonged, slow death. But that I’m facing death for something that can be managed is bloody ridiculous, and it makes me so angry.”

“I die when I run out of money.”

Latest Stories
Dear Taliban (Extended)
Announcing Our 2024 Podcast Slate
Introducing CanadaLabs