After she chose doctor-assisted death because she was in agony with no end in sight, the family of a Quebec woman with Lyme disease is calling for change on how the medical system handles cases of the infectious illness.
Stéphanie Lavoie was only 30 years old when she died on May 17. She spent most of her adult life fighting a barrage of escalating symptoms that left her bedridden and barely able to eat by the end of her life.
“The pain was unmanageable,” Cathy Lavoie said about her sister’s deteriorating health in an interview.
Health Canada says symptoms of Lyme disease range from rashes and headaches to severe joint pain and memory loss. In rare cases, the tick-borne illness can cause death due to heart infections.
Lyme disease is becoming more prevalent in Canada as the warming climate pushes the boundaries of a range of pathogens and risk factors northward. A federal report noted there were 3,147 reported cases of the disease across the country in 2021, up from 266 in 2011.
Lavoie was bitten by a tick in Quebec’s Saguenay region eight years ago, but diagnosis and treatment in Canada proved difficult. Her sister said the Lyme disease diagnosis was confirmed in the United States, Mexico and Germany — but never in their home province since Lavoie’s condition didn’t meet all the markers.
The illness tore into her body. At first, aches crept into Lavoie’s feet and then spread to her knees and joints. Four years ago, she started using a wheelchair.
The pain became so excruciating she was confined to her bed for the last two years of her life. Her hands and feet curved from the disease.
Her condition worsened last August to the point where she could only stomach bananas. Lavoie weighed only 59 pounds when she died.
“She could not tolerate anything else,” Cathy Lavoie said. “And even at the end, bananas were giving her a hard time.”
As Lavoie faced mounting pain, her sister said she began considering medical assistance in dying as a last resort.
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“She still tried some things to see if it could improve her situation,” Cathy Lavoie said. “And she only wanted to have a Plan B if the pain got so bad and her condition got so bad that she could put an end to it.
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“And that’s what happened.”
‘Finally free’ from years of suffering
Cathy Lavoie said her sister fought to live. But as her weight dipped dangerously low and she had trouble eating, their request for at-home medical care for intravenous nutrition was denied. Her family alleges she didn’t meet the Quebec health system’s criteria.
In a message recorded for a journalist shortly before she died and shared with Global News, Lavoie herself asked, “Is it ethical to let someone die because they do not fit into one of the famous checkboxes?”
Lavoie chose a doctor-assisted death as the pain became intolerable. She described feeling her body nearing the end.
“After eight years of fighting, of being strong with fantastic people around me, I am at peace with laying down my arms,” she said.
Dr. Georges L’Espérance, a retired neurosurgeon and president of the pro-MAID advocacy group Association québécoise pour le droit de mourir dans la dignité, said the law is strict. An assisted death is a choice that isn’t made lightly.
“We have to listen to that patient who is suffering,” L’Espérance said.
Canadians must meet several criteria to be eligible for MAID, including suffering from a serious and incurable disease. They must also be an adult, able to make the request themselves and in an advanced state of irreversible decline, among other factors.
L’Espérance noted it’s rare that patients as young as Lavoie receive a medically assisted death. The majority are seniors.
“In fact, the majority are patients over 65 or 70 years old,” he said.
Lara Simard was close with Lavoie and they spoke nearly every day. They came from the same town and shared their struggles with Lyme disease.
Her friend will be remembered for the “resilience and courage she was showing every day,” she said.
“A part of me is broken from her loss and from the promise. The promise that we made ourselves to finally one day find the healing. We were looking for it together,” said Simard, who is also a co-ordinator with the Association québecoise de la maladie de Lyme.
“And another part of me is relieved to know that she’s finally free from all those years of suffering.”
Lyme disease patients need ‘to be believed’
While Lavoie’s decision was supported by her family and friends, those who knew her want an overhaul in how Lyme disease is diagnosed and treated in Quebec.
“She was a fighter,” Cathy Lavoie said. “When one door was shutting, she knocked another one and tried something else.”
Cathy Lavoie feels the medical system let her sister down, as her symptoms were often treated separately rather than as a whole. At times, Lavoie was dismissed by medical professionals even as her health spiralled.
“That makes the fight even harder because she faced a lot of people not believing what she was going through,” Cathy Lavoie said, adding that nobody “stops walking and using their hands” for attention.
Simard competed in triathlons and was an avid athlete before she “reached the bottom” with Lyme disease.
Her symptoms became so severe she became bedbound, lost 35 pounds and questioned how anyone could live like this. Simard also considered a doctor-assisted death.
“I was abandoned by the health-care system, just like Stéphanie,” Simard said.
While her latest treatment seems to have helped, Simard is still dealing with symptoms every day. More needs to be done to help patients with the tick-borne illness, she said.
“We have thousands of people suffering from Lyme and they don’t have any clinical diagnosis,” Simard said. “And they don’t get any treatment or they don’t get recognized at all in the health-care system.”
Since her sister’s death, Cathy Lavoie has heard from others who are facing similar struggles. “It’s crazy” to know so many people are going through the same thing, she said.
“(Stéphanie) wanted things to be different,” she said. “She wanted people to be believed and people to be to receive the help they need.”
Quebec Health Minister Christian Dubé was asked about a lack of resources for Lyme disease patients in the wake of Lavoie’s death.
“We’ve put 15 clinics in the last few years to sure we have those diseases being treated,” he said.
“Lyme is a very complex sickness. And I feel very bad for that, but I think we’re putting the clinics with the expertise that will be able to solve that.”
In her final message, Lavoie encouraged anyone suffering from the disease or other illnesses that are often not widely recognized to keep fighting.
“I wish you good luck, have courage and don’t give up. Continue to believe in yourselves,” she said.
— with files from Global News’ Gloria Henriquez and Anne Leclair and The Canadian Press