Across Canada, doctors’ views on medical assistance in dying are complex and occur on a spectrum. In our film, we feature two respected Canadian doctors, Louis Roy and Wendy Johnston. Drs. Roy and Johnston perspectives on the new law and its implications on their profession are a window to the sentiments shared by healthcare providers across the country.
In Road to Mercy, we meet Dr. Wendy Johnston, Professor of Neurology, and Medical Director at the University of Alberta’s ALS Clinic.
Dr. Johnston's patient John Tuckwell has ALS (Amyotrophic Lateral Sclerosis), a terminal, neurodegenerative disease. The Alberta court granted him the right to a medically assisted death in May, before the federal government's new legislation was passed.
While at Oregon Health Sciences University (1992-2000), Dr. Johnston established the first ALS clinic in Oregon and conducted a study on the attitudes of ALS patients and their caregivers toward assisted suicide; the study was published in The New England Journal of Medicine. In 2000, Dr. Johnston moved to Edmonton where she re-established the ALS Clinic at University of Alberta, now an interdisciplinary clinic and research program.
Given her extensive experience working with ALS patients and her time in Oregon, Dr. Wendy understands patients’ interest in assisted death, especially when diagnosed with a disease like ALS. However, she doesn’t think that it’s wise to offer it as an option during the early stages of the illness.
“When you’re first diagnosed, you think I can’t be that. I can’t be that guy in the wheelchair, and then you discover that yeah, I’m in a wheelchair but you know, I’m still doing the things that I want, achieving the goals that I want … I hope [medical practitioners] won’t follow through on a request in that time ... My fear is that because ALS has this reputation of the disease that no one wants that people that experience ALS don’t know that life can be good. They don’t see that people with advance disability have quality of life.”
She's not alone. In a survey of 231 Canadian ALS doctors, it was found that:
- 80% of ALS doctors and allied health providers (nurses, social workers) believe those with moderate to severe symptoms should be eligible to seek aid in dying
- Only 9% of physicians agreed that those with early-stage ALS should qualify for medical help to die
- 8% of doctors did not support assisted dying for any stage of the disease
ALS causes the nerves that control your muscles to die. It leads to a loss of mobility, speech, and eventually the ability to breathe. Around 250 Canadians are diagnosed with ALS annually, and an estimated 3000 are living with the disease. ALS patients generally die within 5 years of diagnosis. They are the second highest users (after cancer) of medical aid in dying.
In her research and experience, Dr. Johnston found that it is "the fear of future suffering ... and of losing autonomy" that prompts many ALS patients to request an assisted death.
Studies in Oregon have shown that many patients who opt for an assisted death do not follow through. Since 2011, there have been 724 prescription recipients, and only 466 assisted deaths reported in Oregon.
In Quebec, a reported 253 patients have requested MAiD between December 2015 and July 2016. However, only 166 have received it. Of the 87 who did not receive it, 16 changed their mind.
Dr. Johnston makes her position clear on providing medical aid in dying, “I just can’t do it". However, she is open to having the conversation with her patients, “I’m not compromised personally by talking about it … I’m just not okay with providing it myself … I can’t cause a death intentionally”.
See more of Dr. Johnston and John's story, October 6th at 9pm on the CBC-TV series, Firsthand