Sandra Demontigny, at her home in Lévis, Quebec, on Oct. 23. Demontigny was diagnosed with Alzheimer's at the age of 39 and has, for the past several years, focused her energy on what she feels she can control: dying on her own terms.Renaud Philippe/The Globe and Mail
At the age of 45, Sandra Demontigny has already spent an inordinate amount of time considering her own death.
Ms. Demontigny watched her father die of Alzheimer’s disease when he was just 53, back in 2007. Before that, she watched her grandmother die of Alzheimer’s. So it wasn’t entirely surprising that, six years ago – when she was just 39 – she too was diagnosed with Alzheimer’s.
She considers her fate inevitable. “I know what is coming,” she said. “It’s in my genes.”
So for the past several years, Ms. Demontigny, who lives in Lévis, Que., has focused her energy on what she feels she can control: dying on her own terms. Ever since she was diagnosed, she’s known that when the time comes, she’ll want medical assistance in dying.
But there was one potential obstacle that stood in her way: the risk that she might lose the mental capacity before she’s eligible for MAID. Key criteria for MAID are mental competency and the ability to give informed consent.
That changes for Ms. Demontigny this week, as Quebec becomes the first province in the country to approve advance MAID requests – for a medically assisted death that could take place months or even years in the future. As of Wednesday, Quebec will begin to authorize advance requests for MAID for those who have a diagnosis of “a serious and incurable illness leading to incapacity to give consent to care.”
From the time Demontigny was diagnosed, she’s known that when the time comes, she’ll want medical assistance in dying.Renaud Philippe/The Globe and Mail
The province is moving ahead with the change even as the federal government urges caution. “We’ve taken very slow, prudent steps when dealing with an issue as sensitive as this,” federal Health Minister Mark Holland said in a press conference Monday.
He said that the government will initiate consultations on the issue of advance requests over the coming months. Until then, he said, “this continues to be illegal in Canada.”
But Quebec, in the meantime, is asking the Crown prosecutor’s office not to charge doctors who follow the new rules.
For Ms. Demontigny, it’s a relief. “It’s less stress for me and for the people around me too.”
When her father, Denys Demontigny, first began experiencing Alzheimer’s symptoms at the age of just 47, Ms. Demontigny said he tried to hide them from the rest of the family. “He didn’t want us to worry about him. He was trying to live his life like usual.”
But after making a number of uncharacteristic errors at work, his managers urged him to visit a doctor. He was diagnosed with Alzheimer’s.
Over just a few years, Ms. Demontigny watched her father’s sharp descent. His body remained strong, but his mind went into rapid decline, she said. He would roam around the house for hours, “as if it was a reflex.” When he tired of walking, he’d crouch on his hands and knees, still roaming.
Toward the end, he spent almost all of his time in bed, she said. He was unable to speak or move. “He was lying, and he had tears here,” she said, pointing to her face.
“I think he was trying to say that he didn’t want that. That he didn’t want anyone to see him like that.”
So years later, when Ms. Demontigny began noticing her own small memory lapses, she knew to quickly see her doctors. She was diagnosed soon after.
She quit her job as a midwife, and, along with spending as much time as she could with her three kids and boyfriend, began advocating on behalf of the Quebec Association for the Right to Die with Dignity.
“It was clear to me that I would not go at the end of this illness,” she said. “I don’t want that for me. I don’t want my family, or my children, my boyfriend, my friends, to see me like that. As a prisoner of my body.”
Quebec’s move is not without controversy. Catherine Ferrier, a family doctor and assistant professor in geriatric medicine at McGill University, argues that advance consent can never be fully informed. “You don’t know how your experience will be,” she said. “You don’t know what the alternatives will be. You don’t know many, many things.”
But in Quebec, there’s wide support for MAID. A survey conducted by Ipsos this year on behalf of Dying With Dignity Canada found that 88 per cent of respondents in Quebec support advance requests for those with a “grievous and irremediable condition eventually leading to decisional incompetence.” The survey found that 83 per cent of Canadians over all are in support of advance requests.
“For people with a diagnosis of Alzheimer’s, it’s a very important relief,” said Georges L’Espérance, a neurosurgeon and president of the Quebec Association for the Right to Die with Dignity.
“They know now that they can keep on with their life, but won’t go to the end of a very disturbing disease that will make them totally dependent on everybody around them.”
Now that the change is imminent, Ms. Demontigny and her loved ones are adjusting to the new reality.
“Before, we were in the theoretical world,” said André Secours, Ms. Demontigny’s boyfriend. But, he added, “she’s very happy. She’s not changing her mind.”
Ms. Demontigny said she’s already spoken with her doctors, to ensure she has all of her eligibility criteria in place. She’ll fill out the forms as soon as they’re available – as early as this week. And then, she said, depending on when she’s ready, she’ll submit the forms.
She’s grateful she’s able to make this choice for herself.
“I have had a great life. I’m happy with my family, my boyfriend, my friends,” she said.
“I’ll be very sad to quit the people that I love. But I’d rather quit with my smile than cry.”