A 44-year-old man, living with long COVID for more than three years, has requested medical assistance in dying (MAID) because he says he is exhausted, tired of being in pain and considers himself a burden to his family who are caring for him.
To be eligible for MAID, the law states that you must have a serious and incurable illness, experience persistent and unbearable suffering, and must make the request in a free and informed manner.
Since 2021 in Canada, new measures have allowed people whose natural death is not reasonably foreseeable to be eligible.
Emmanuelle Marceau, associate professor at the Université de Montréal’s (UdeM) School of Public Health pointed out that quality of life is subjective to each person.
“What is a life worth living? Is a life with a lot of physical suffering and little hope of change no longer worth it,” said Marceau, who’s also an associate researcher at the Centre for Research in Ethics (CRÉ). “With the opening of medical assistance in dying, there is a fear that people will feel that they no longer have a meaning. They no longer have a 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 MAID for these reasons. At that point, we can ask ourselves as a society: aren’t we abandoning the most vulnerable?”
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 pandemic.
When he first contracted the virus, Verret struggled with chronic fatigue and strobe lights caused him to have seizures and tremble. One night, he fell to the floor in a seizure and his smart watch called for help. “That was my first of many ambulance rides,” he said.
Over time, he had more seizures, fatigue, and nausea.
“The symptoms built up and instead of getting better, they got worse,” he noted.
Home help, the solution
Verret is a father of two children, aged 20 and 15.
With his illness, household chores became difficult, and he had trouble caring for his children.
“I had to choose every day whether I would cook, shower, or do some laundry or clean. I couldn’t have a routine at home that allowed me to do a bit of everything,” Verret explained.
Although he received compensation from the CNESST, the bills were piling up.
Verret regularly ordered from restaurants because he lacked the energy to cook. Even doing grocery shopping online required too much mental capacity.
Verret also hired a maid to clean his home, after the dirt started piling up.
In 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 said.
There is a RAMQ program to provide help in case of an illness. However, Verret said that his tax return was too high as a salesman to be eligible.
Staying with his parents for a few months allowed him to save up. His financial and physical situation improved enough that Verret decided to rent a multi-generational apartment.
His older son lived in one apartment and Verret lived in the other unit with his youngest child, every other week.
“And then the downward spiral began,” he said. “Thrombosis, sepsis, cardiac arrest, inflammation, severe diarrhea, back pain and a diagnosis of collagenous colitis.”
From there, things only got worse.
Since January 2024, Verret has been suffering from urinary incontinence, which meant he had trouble controlling his bladder and had to wash his bed frequently. Housework became a burden again.
“Changing the bed, for me, feels like running 10 km,” he said.
His youngest son started making him meals while he was there.
“Looking back, it’s 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 explained.
Last battle
In June 2024, he found himself in the emergency room again, this time accompanied by his parents who had mentioned to staff that they wanted their son to be placed with special resources.
“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 (feces),” said Verret.
For now, he is still living with his parents.
“I would like the government to wake up and give us help with domestic tasks (…) to relax the rules for the program. That’s the solution. The six months I spent with my parents, I got back on my feet, and I had hope. I was almost ready to go back to work with a job that corresponded to my new reality,” he explained.
Marceau highlighted the social injustices related to the disease. She says the health care system is generous in Quebec, but when it comes to home care and housekeeping, there are gaps.
“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 said.
Last week, when told that nothing could be done for him, Verret asked for medical assistance in dying.
After being assessed at the Institut universitaire en santé mentale de Québec, Verret wants a follow-up appointment for MAID 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 said. “According to my reading, (my request) is admissible, but I know very well that it will be difficult to get it through.”
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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–This report by La Presse Canadienne was translated by CityNews