An Ottawa woman who has been trying for years to get approval for physician-assisted dying says the long wait has dramatically reduced her quality of life, and she hopes others won’t face as many hurdles as she prepares to travel at five o’clock for the next procedure in the week.
Margaret (Maggie) Bristow describes her chronic pain as “intolerable” and “crippling”, living with degenerative disc disease, fibromyalgia, spinal stenosis, spinal arthritis as well as bulging discs and bone spurs.
“I feel like people are taking ice picks and shoving them into my chest…I feel like my skin is burning on my body 24/7,” Bristow has since said. her sofa, sitting as still as possible.
She said that for two decades she had slept sitting up because of back pain.
“Lately it feels like my lower spine is going to pop out of my skin,” Bristow said, wincing in pain.
Bristow describes his successful career decades ago in the aerospace industry as “one of the best times of my life.” She was also passionate about fostering shelter dogs and fondly tells stories of falling in love with each one.
But in 1998 the pain started and his health began to decline significantly.
WATCH | Bristow describes his journey:
After seeing a neurologist, neurosurgeons, pain specialists, and trying various opioid therapies and medications for her chronic pain, Bristow said “nothing really worked for me.”
Bristow said she has requested medical assistance in dying, also known as MAID, three times since the procedure was decriminalized in 2016 – twice before and once after recent legislative changes in 2021 expanded the criteria for patient eligibility.
All three times, she says, her Ottawa evaluators declared her ineligible.
“I could have followed another path, instead of [them] dragging me and making me wait, giving me hope. They chose to make my life horrible,” Bristow said.
When asked why she was turned down recently, Bristow said she was told her assessor wasn’t “comfortable” approving her.
“They left me, thrown to the side, like, in pain.”
Forced to turn elsewhere
A patient must have “a grievous and irremediable medical condition” to be eligible for MAID, according to the federal framework – meaning they have a serious and incurable illness, disease or disability; are in an advanced state of irreversible decline in capacity; and endure physical or psychological suffering that is intolerable to them and cannot be relieved under conditions they deem acceptable. As of 2021, patients like Bristow are eligible even if “natural death is not reasonably foreseeable”.
Bristow said her family doctor connected her with MAID assessors in the Toronto area this spring.
Last month, Bristow learned that she had been approved.
“[I’m] just over the moon that I finally, after all these years of fighting, that I finally get what I need,” she said.
His intervention will take place on August 10. She will travel to Brampton, Ont., where her caregiver is – taking strong painkillers to help her get there. She chose to do it in a hospital because she wants to donate her organs.
“I thought Ottawa was the capital of Canada. Why don’t they give me the same? Why did they force me to go over their heads and take me on a trip,” said Bristow, who has been housebound for years.
“Shame on Ottawa.”
Eligibility results may differ by clinician
Toronto family physician and MAID provider Dr. Chantal Perrot said she assessed a few patients in Ottawa who were having difficulty finding an assessor in a timely manner.
“That’s part of the challenge,” she said. “There aren’t that many of us across the country.”
Perrot explained that coordination of MAID is not standardized across the country; for example, while Ottawa has a regional network, there is no such network in Toronto.
It’s not uncommon to hear of patients traveling to get MAID in Ontario, she said, because there may not be healthcare professionals nearby, willing or able to provide MAID in some areas. Some even travel from province to province.
Each evaluator makes a clinical decision about a patient’s eligibility on a case-by-case basis, based on their interpretation of the patient’s legislation, history and conditions, she explained.
“It’s not uncommon for someone to be declared ineligible by one assessor, but deemed eligible by someone else,” Perrot said.
Ottawa WMA Respects Physicians’ Right to Refuse
Champlain Regional MAID Network, which operates through The Ottawa Hospital, declined an interview.
In an email, the network said all medical professionals participate on a voluntary basis.
If a doctor or nurse practitioner is “unavailable or uncomfortable” during the process, the network said it does “every effort” to refer patients to other providers who can support them.
“The right to conscientious objection is a core value and principle of MAID,” the statement said. “If a supplier is unwilling to accept a case, we respect that right.”
The provincial health department also declined an interview. If a regional network refuses a patient, its care coordination service helps connect them with alternative clinicians, he said.
A regional network may have its own capacity, resource or internal policy issues that may prevent it from providing MAID to some patients, the ministry said.
The world is losing ‘a gem’, says friend
Ann Marie Gaudon met Bristow through the Canadian Chronic Pain Association and calls her a good friend.
“I saw an incredibly proud woman, I saw grace, I saw thoughtfulness, generosity, lots of love and even moments of humor despite the situation,” Gaudon said.
She calls Bristow a “survivor, through and through.”
“Maggie is a gem and we’re all going to lose her. The world is going to lose her,” Gaudon said.
Bristow said she wanted to share her story in the hope that others don’t encounter similar obstacles in the future.
For people who have been denied MAID, she recommends seeking help from a family doctor, specialist or advocate, or the province’s care coordination team.
While holding a photo of herself and her late fiancé Brian, Bristow said she was looking forward to reuniting with her “soul mate”.
“He’s the love of my life,” she said.
“Not many people meet their true love. And I have and had it for four and a half years. … And I hope to see it soon.”