Man who considered assisted death after bedsore tells coroner's inquiry 'you have to fight' for care

Among the dozens of people who testified at a coroner's inquiry into the death of Normand Meunier, Claude Labelle may be the only one who really understands what he went through.

Meunier, a 66-year-old quadriplegic Quebec man, requested medical assistance in dying after developing a severe bedsore during a four-day stay in the ER at Saint-Jérôme Hospital last year.

The inquiry has heard over the last several weeks about the unbearable pain he suffered, and how the system failed him before he died in March 2024.

"In my opinion, it was the right thing to do," Labelle said of Meunier's decision in an interview with CBC News after his testimony Tuesday.

"It was very, very, very hard for him — a big, severe wound."

Like Meunier, Labelle is quadriplegic, uses a wheelchair and is prone to severe bedsores on his buttocks.

"As soon as you have pressure or redness, it's the beginning of a possible sore, so what you have to do is relieve the pressure on that red spot," Labelle said. "I have to be on my side — one side or the other, never on my back."

That can mean days or even weeks of being bedridden in uncomfortable positions while waiting for a sore to heal.

The key to preventing such sores is to change positions every two hours, and to use a special pressure mattress for sleeping or resting.

Meunier was unable to get access to such a mattress during his stay in the ER, the inquiry has heard.

Like Meunier, Labelle is frequently in hospital, and he's also had difficulty accessing those mattresses. He said each time, he has to re-explain to hospital staff the care he needs to prevent bedsores.

Labelle said when he does that, he's often dismissed by hospital staff.

"You have to fight to get care. That's nonsense," Labelle said.

Labelle told the inquiry how he hit his own breaking point during his most recent hospital stay in January, when he developed a sore and his discharge was delayed several times.

"When the doctor told me I had to stay even longer, I said no, that's it," he said.

Labelle asked his doctor that day if he could request medical assistance in dying.

"I was at the end of my rope," he said.

The doctor asked him if he had a date in mind.

"I said 'as soon as possible'. I said 'if you can do it today, let's do it today, I can't deal with it,'" he said.

Labelle said at the time, he feared he might be bedridden for the rest of his life.

"I had made my peace with being disabled, with being in a wheelchair the rest of my life, but not in a hospital bed," he said.

His doctor suggested he take time to discuss his request for assisted death with his family before making a final decision.

He ultimately decided not to go ahead with it.

"It's still in my head. I don't have any sores right now. I don't have any signs of a sore, which encourages me," he said.

"But it's fragile."

An advocacy group representing people with spinal cord injuries told the inquiry cases like Labelle's and Meunier's are "the tip of the iceberg."

Walter Zelaya, president of Moëlle Épinière et Motricité Québec (MEMO Quebec) also testified Tuesday at the inquiry, which in its final week heard recommendations from experts about how to prevent such incidents from happening again.

"At least 12 members of our association have requested medical assistance in dying due to health problems and a health-care system that doesn't take care of them," Zelaya told CBC in an interview after his testimony.

Zelaya said all the requests came since the province loosened the criteria for receiving medically assisted death in 2023.

He said in most cases, the patients were frustrated that hospitals and CLSCs weren't doing enough to help them prevent and treat bedsores.

"People are caught between the undue suffering they experience, and ultimately deciding to leave. And they ultimately choose to leave," Zelaya said.

"We understand this decision very well, but it's extremely painful to see that these people deep down did not want to die."

During his testimony Zelaya showed the inquiry several photos of painful bedsores submitted by members of the group, similar to the one that Meunier developed in hospital.

His group keeps a registry of members who have bedsores, and there are currently dozens.

Zelaya said things became harder for members of the group in 2015 following the health-care reforms of the previous Liberal government.

He said the centralization of administration and decision-making at the time meant many local institutions — individual hospitals and rehab centres — lost their governance structures.

It became harder for patients with specialized needs to request care and services, and harder for them to complain when things went wrong, he said.

Zelaya said that's led to an increase in patients developing serious bedsores.

MEMO Quebec made several recommendations to the inquiry, including:

• Creating dedicated wound clinics to care for patients with pressure sores.
• Improving communications between home-care services and hospitals so patients' care plans automatically follow them when they're hospitalized.
• Making sure all hospitals and care homes have an appropriate supply of easily accessible pressure mattresses.
• Training on prevention and care of bedsores for all health-care workers.
• Recognizing and valuing the expertise of patients with pressure wounds.
• Ensuring each patient who suffers from chronic bedsores is followed by a family doctor.

Other groups also made recommendations to the inquiry this week, including health-care institutions and professional orders.

Coroner Dave Kimpton will now take time to consider all the testimony before delivering a final report with recommendations, which is expected in three months.

Labelle said when MEMO Quebec first asked him to testify at the inquiry, he was skeptical.

"I wondered if it was a waste of time, if after all this, no one is going to do anything," he said.

But he says watching the process unfold, and watching how Kimpton handled witnesses, made him more optimistic.

"He's really on his game, really attentive to details, and taking the time to listen," Labelle said.

"I really have faith that this will lead to something, and if it doesn't, MEMO Quebec will keep knocking on doors," he said.

"Maybe I'll be there too," he said, then pausing for a moment, a slight smile curling onto his face.

"Not maybe, I'm going to be there," he said.