Reality, not religion, is the reason people need euthanasia-free health care

Gabrielle Peters

May 16, 2024 8 Reactions

But much of the media coverage of MAiD runs counter to the World Health Organization’s guidelines for responsible reporting on suicide. The WHO warns against spreading suicide contagion through prominent placement of stories about suicide, by normalising it or presenting it as a constructive solution to problems, and by explicitly describing the method used.

Perhaps a lot of the coverage of MAiD ignores contagion protocols because MAiD is a euphemism for assisted suicide or euthanasia.

Downie and Gilbert focus on St Paul’s Hospital in Vancouver and offer an anonymous doctor’s fictional scenario of what they imagine a patient might experience while being transferred to another setting to access MAiD. They use the term “forced transfer.”

A former executive director of Dying with Dignity said in a 2019 statement of claim that it was her “creative thinking” that is responsible for the “ground-breaking” term. The statement was part of an Ontario lawsuit in which the public-relations value of the term was highlighted, noting it has been adopted “nationally and internationally by academics, clinicians, lawyers, and others in the right to die movement.”

Patients are transferred every day to access care, equipment or expertise that is not available where they are.

And it is striking that the term “forced transfer” is selectively applied to MAiD and not, for example, patients forced to move to long-term care facilities not of their choosing, on threat of being billed $400/day by the government if they refuse.

Instead of fiction written by a physician imagining what a patient might feel, I have a real story about real events told by the person who really experienced them.

The deterioration of care

In 2009, before MAiD was legalised, I was living in North Vancouver. Since the onset of my rare neuromuscular disease several years prior, I had been seen by an assortment of specialists at three different hospitals. Approximately two years of that time was spent in search of a diagnosis for the multiple and worsening symptoms.

At first, I thought I was just run down following a virus, but a turning point was when I had to be helped out of the community centre pool by a lifeguard because I couldn’t catch my breath a quarter of the way into my first lap.

Over time, I transitioned from trail runner to using a cane, then a walker and eventually a wheelchair. Simultaneously, I transformed from being perceived as normal but sick, to disabled and “unfixable” – and fat because of the corticosteroids.

No longer able to work and unable to access benefits due to eligibility criteria that declared me a dependent of the boyfriend I had been living with, my economic situation deteriorated.

Soon, my care changed, too. Nurses stopped complimenting me on my shoes, asking about my work, and telling me not to give up. The new answer to every question was a shrug and “you’re disabled.” It took three trips to two different hospitals and a tense standoff to finally be diagnosed and treated for deep-vein thrombosis and a pulmonary embolism following an intravenous immunoglobulin treatment (IVIG).

Meanwhile, my condition created a smorgasbord of symptoms, and managing one would sometimes worsen or create another. There were complications, “atypical presentations,” systemic infections, superbugs, and an ever-growing list of prescriptions sometimes accompanied by allergic reactions and serious side effects. I was a “high-cost health-care user.” The term is used to describe the five per cent of healthcare users who are said to account for nearly two-thirds of healthcare costs.

I sensed a growing defeatism among those providing me with care. But I was certain that the danger was at least partially a result of the healthcare system’s siloed and almost exclusive focus on the latest acute crisis made worse by underfunding and embedded bias.

With each hospitalisation, staff would do just enough to be able to send me home to die.

In between hospital stays, home-care aids and nurses would provide care.

One day, I asked one of the visiting nurses if there wasn’t anyone anywhere who would put some effort into trying to prolong my life.

She said that she’d had some other patients like me (who had been given up on). Some had tried St Paul’s and swore the care there was different. She told me it was probably my last hope.

She was right. St Paul’s did save my life when others had given up and left me to die, and by the time I finally found a way to get there, I was dying.

Unfortunately, no place is free of ableism. St Paul’s was not the first place someone in a healthcare setting told me it would be better if I died sooner rather than later, but it was the first time I was asked to indicate my agreement by signing on the dotted line.

A hospital employee carrying a box of tissues and a clipboard came to my room. After closing the door, she put her hand on mine and expressed her “sincere sadness” for my situation. She raised that my abovementioned boyfriend had announced he was leaving me shortly after I had been admitted, and this meant I would be without money or housing.

She told me I had been through so much and deserved to rest. The rest she was offering me was permanent. She urged me to sign a do-not-resuscitate order.

I declined.

We went back and forth as her veneer of concern peeled away. She was angry. She said she could not understand why I would want to go on living. I told her to get out of my room. I can still see the disgust in her eyes. I hope she can still see the rage in mine.

When the specialist came into my room, I grabbed his hand and told him that I wanted a chance to live. I asked him to please do more than patch me up just enough to make it out of the parking lot. The next day, he said he would do everything he could to help me if I agreed to do whatever he told me to do.

We shook on it.

I was at St Paul’s for nine months. It is too long of a story to share all the good that happened – and all that was lost or undone by the policies of the rehabilitation hospital I was sent to afterwards. Not to mention a subsequent denial of treatment.

But 15 years later, I am still alive.

Throughout my long stay at St Paul’s, there was an Indigenous woman down the hall who had been there longer than me. She had decorated her walls with art and blankets from home. There was a man who was a patient for many months. He had been living outside and had developed a skin infection. His whole body was bandaged.

These were people I had not seen in other hospitals. They were marginalised people who needed more time and more care due to the lack of supports available to them in the community and due to the social and political determinants of health that caused or contributed to their health crises. At St Paul’s, no one ever asked me if I was Catholic. I never saw a priest or nun. No one brought up religion.

At a follow-up appointment with the specialist, I showed him a photo of me on a sailboat. He smiled and then his expression became more serious. He explained that a medication I had been prescribed for years had been, in essence, poisoning me. “You were dying when I met you,” he said. “I know,” I said. I thanked him for not giving up on me.

I knew from the nurses that he had fought to keep me in hospital as long as he did.

He ran me through a strength test, in which I raised my arms. He pushed down on them and was surprised to meet any real resistance. He stepped back and shook his head, marvelling. The real change, though, was a number of medications I required: it was declining, not increasing.

Many, if not most, disabled people would prefer the additional option of secular MAiD-free spaces. But Catherine Frazee, whose quote starts this article, has articulated the view of a great many disabled people who fervently want safety from MAiD.

Affirming support for the belief of “better dead than disabled” in healthcare is dangerous and cruel. Canada has made disabled people a killable class, and hardly anyone has considered the impact this would have on us. This country must maintain MAiD-free healthcare spaces.

Does MAiD endanger the lives of the disabled? Leave your thoughts in the comments section below.

This article has been republished under a Creative Commons license from Policy Options.

Gabrielle Peters is a disabled writer, policy analyst and the co-founder of Disability Filibuster.

Image credit: Pexels