‘Descent into hell’: Quebecer with long COVID requests MAID over lack of home support

Tired, in pain and worried about being a burden to his family, a 44-year-old Quebecer suffering from long COVID has requested medical assistance in dying.

To be legally eligible for MAID, one must have a serious and incurable illness, experience persistent and unbearable suffering, and make the request in a free and informed manner. Since 2021, in Canada, people whose natural death is not reasonably foreseeable are eligible.

Emmanuelle Marceau, associate professor at the Université de Montréal’s school of public health, says quality of life is subjective: What is a life worth living? Is a life with lots of physical pain and little hope of change no longer worth it?

With MAID, there’s a fear that people will feel they no longer have any meaning, said Marceau, who is also an associate researcher at the Centre de recherche en éthique.

“They feel that they are holding (their family) back,” she said. “I think we have to question when someone would like medical assistance in dying for these reasons. At this point, we can ask ourselves as a society: ‘Are we not abandoning the most vulnerable?’”

Sébastien Verret’s life was turned upside down when he contracted COVID in December 2020, just a few days after starting a job at a long-term care home. Previously working in sales, Verret registered with the Je Contribue program set up by the Quebec government at the beginning of the pandemic to recruit workers for the beleaguered health sector.

When Verret first contracted the illness, he struggled with chronic fatigue. Strobe lights caused him to have seizures with tremors. One night, he fell to the ground during a seizure and his smartwatch called for help.

“It was my first in a long series of trips in an ambulance,” he said.

Over time, Verret had more seizures, fatigue and nausea.

“The symptoms accumulated and instead of getting better, they got worse,” he said.

Verret has two children, who are now 15 and 20. With his illness, household chores became nearly insurmountable. He struggled to care for his kids.

“I had to decide every day whether I cooked food, took a shower, or did some laundry or cleaning,” he said. “I couldn’t have a routine at home that allowed me to do a little bit of everything.”

Though he received compensation from Quebec’s workplace safety board, Verret’s bills piled up. He regularly ordered takeout since he lacked the energy to cook; even just online grocery shopping required too much mental capacity. He occasionally resorted to hiring a housekeeper to keep his home clean.

In February 2023, he was no longer able to pay for housing. He moved in with his parents, who took care of him.

“I was in recovery,” he said. “I was doing occupational therapy and I had hope — not of being cured, because I don’t think I’ll ever be cured, but I had hope of being able to live with the illness, to cope with it.”

The Régie de l’assurance maladie du Québec has a program to provide domestic help in the event of an illness, but Verret said his tax return from when he was a salesperson means he doesn’t qualify.

Verret’s temporary stay with his parents allowed him to save money. His financial and physical situation improved enough for him to rent a multi-generational apartment, with his eldest living in one unit and his youngest with him in the other unit every other week.

“And there began a descent into hell,” he said: thrombosis, sepsis, cardiac arrest, inflammation, severe diarrhea, back pain and a diagnosis of collagenous colitis.

Things only got worse. In January, Verret had incontinence, meaning that he often had to wash his bed. Household chores started to become a burden again.

“Changing the sheets, for me, is an effort like running 10 kilometres,” he said.

His youngest started making meals for him when he was there.

“Looking back, it’s abnormal that my child, who was 14, made my meals,” Verret said. “It was abnormal that he was my caregiver.”

“I was so weak that for the second time in a year, I abandoned housing. I asked the children’s mother to take them back. It was very hard for me.”

In June, Verret 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 centre with resources.

“As abnormal as it is that my son takes care of me, it’s just as abnormal that at 44 years old, it is my mother who comes to change my bed full of shit,” he said.

For now, Verret is living with his parents.

“I would like the government to wake up and help with domestic tasks … to relax the rules for the domestic help program,” he said. “That’s the solution. It’s rest, and help around me. The six months I spent with my parents? I felt better and I had hope. I was almost ready to return to work with a job that corresponded to my new reality.”

Marceau highlighted the social injustices linked to illnesses. In Quebec, health care is overall rather generous, but when it comes to home care and housekeeping, there are gaps.

“If, as a society, we were capable of promoting greater autonomy, a greater social safety net, they probably wouldn’t be there,” she said.

A week ago, when he was told once again that nothing could be done for him, Verret requested medical assistance in dying.

After being evaluated at the Institut universitaire en santé mentale de Québec, Verret is expecting an appointment for a followup on his request by the end of September.

“But I’m going to push for an appointment first, because I’m not going to continue living this life,” he said. “This is my last cry and my last battle.

“According to what I’ve read, (my request) is admissible, but I know very well that it will be difficult to get it.”

Verret has no hope that a miracle drug will improve his situation. He believes that even if there were a cure for long COVID, the damage done to his body is irreparable.