A 44-year-old man, who has had long COVID for more than three years, requested medical assistance in dying (MAID) because he is exhausted, tired of being in pain and he considers himself a burden to his family who are caring for him.
To be eligible for MAiD, the law provides that you must have a serious and incurable illness, experience persistent and unbearable suffering, and make the request in a free and informed manner. In Canada, since 2021, new measures have allowed people whose natural death is not reasonably foreseeable to be eligible.
Emmanuelle Marceau, associate professor at the School of Public Health at the University of Montreal, points out that the aspect of quality of life is subjective to each person. What makes a life worth living? Is a life with a lot of physical suffering and little hope of change no longer worth living?
With the opening of medical assistance in dying, there is a fear that people will feel that they no longer have meaning in their lives, raises Mme Marceau, also an associate researcher at the Center for Research in Ethics (CRÉ).
They no longer have any contribution for their loved ones, for their family; on the contrary, they see that they are preventing them. I think we must question someone who would like care such as medical assistance in dying for these reasons. At that point, we can ask ourselves as a society: “Are we not abandoning the most vulnerable?”
Emmanuelle Marceau, associate professor at the School of Public Health at the University of Montreal
Sébastien Verret’s life was turned upside down when he contracted COVID in December 2020, just days after starting a new job at a CHSLD. Previously working in sales, he had signed up for the “Je contribu” program set up by the provincial government at the start of the health crisis.
Early in his illness, Verret struggled with chronic fatigue and strobe lights would cause him to have seizures and shake. One night, he fell to the floor in a seizure and his smartwatch called for help. “That was my first of many ambulance rides,” he says.
Over time, he had more seizures, fatigue and nausea. “The symptoms built up and instead of getting better, they got worse,” he says.
Home help, the solution
Mr. Verret is the father of two children, the eldest now aged 20 and the youngest 15. With his illness, the household chores were almost insurmountable and he had difficulty caring for his children.
“I had to choose every day whether I would cook, wash, or do some laundry or cleaning. I couldn’t have a routine at home that allowed me to do a bit of everything,” he explains.
Although he received compensation from the CNESST, the bills were piling up. Mr. Verret regularly ordered from restaurants because he lacked the energy to cook. Even doing grocery shopping online requires too much mental capacity. On occasion, he hired a cleaning lady to clean his home, where the dirt was piling up.
By February 2023, he was no longer able to afford his housing. He moved in with his parents, who took care of him. “I was in recovery. I was doing occupational therapy and I had hope – not that I would be cured, because I don’t think I’m ever going to be cured – but I had hope that I would be able to live with the disease, to deal with it,” he says.
There is a RAMQ program to provide domestic help in case of illness. However, Mr. Verret said that his tax return when he was a salesman was too high to be eligible.
His stay with his parents for a few months allowed him to save money. His financial and physical situation improved enough that Mr. Verret decided to rent a multi-generational apartment. His eldest son lived in one apartment and Mr. Verret lived in the other unit with his youngest son, every other week.
“And then the downward spiral began,” he says. Thrombosis, sepsis, cardiac arrest, inflammation, severe diarrhea, back pain and a diagnosis of collagenous colitis.
Things only got worse. By January 2024, Mr. Verret was suffering from incontinence, which meant he had to wash his bed frequently. Housework began to feel like a burden again. “Changing the bed, for me, is an effort like running 10 km,” he illustrates.
His youngest started making him meals the week he was there. “Looking back, it was abnormal that my child, who was 14, would make me meals. It was abnormal that he was my caregiver,” he said.
“I was so weak that for the second time in a year I gave up the accommodation. I asked the children’s mother to take them back. It was very hard for me,” he says with emotion.
Last battle
In June 2024, he found himself in the emergency room again, this time accompanied by his parents who had mentioned to the staff that they wanted their son to be placed in a resource. “As much as it’s abnormal that my son is the one taking care of me, it’s also abnormal that at 44, it’s my mother who comes to change my bed full of shit,” he says indignantly, without taboo.
For now, he is still with his parents.
“I wish the government would wake up and give us help with household chores. […] that he relaxes the rules for the domestic help program. That’s the solution. It’s rest and help around. The six months that I spent with my parents, I got back up and I had hope. I was almost ready to go back to work with a job that corresponded to my new reality,” pleads Mr. Verret.
Mme Marceau highlights the social injustice associated with the disease. In Quebec, the health care system is generally quite generous, but when it comes to home care and housekeeping, there are gaps, she says.
“If as a society we were able to promote greater autonomy, a greater social safety net, it probably wouldn’t be there. This situation should challenge us,” she maintains.
A week ago, when he was told again that nothing could be done for him, Sébastien Verret asked for medical assistance in dying.
After being assessed at the Institut universitaire en santé mentale de Québec, Verret expects to have an appointment for a follow-up on his request for medical assistance in dying by the end of September. “But I’m going to push to have an appointment before then because I won’t continue to live this life. This is my last cry and my last battle,” he says.
“According to my reading, [ma demande] would be admissible, but I know very well that it will be difficult to get it passed,” he acknowledges.
He has no hope that a miracle drug will improve his condition. He believes that even if there were a cure for long COVID, the damage done to his body is irreparable.
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