Woman with chemical sensitivities chose medically-assisted death after failed bid to get better housing

W5: Death Wish, part one W5's Avis Favaro investigates the practice of medical assistance in dying, how it became legal across Canada, and who is eligible for it.

A 51-year-old Ontario woman with severe sensitivities to chemicals chose medically-assisted death after her desperate search for affordable housing free of cigarette smoke and chemical cleaners failed, advocates say.

The woman’s assisted death appears to be a first in the world for someone diagnosed with multiple chemical sensitivities (MCS), a chronic condition also referred to as an environmental illness or environmental allergies, say patient support groups and doctors familiar with her case.

“The government sees me as expendable trash, a complainer, useless and a pain in the a**," 'Sophia' said in a video filmed on Feb. 14, eight days before her death, and shared with CTV News by one of her friends.

She died after a frantic effort by friends, supporters and even her doctors to get her safe and affordable housing in Toronto. She also left behind letters showing a desperate two-year search for help, in which she begs local, provincial and federal officials for assistance in finding a home away from the smoke and chemicals wafting through her apartment.

Sophia asked a supporter to share her correspondence with the media, but asked that her real name not be used to protect her family. She also did not want media attention prior to her death, say friends, fearing eviction and a delay of her medically-assisted death.

“This person begged for help for years, two years, wrote everywhere, called everywhere, asking for healthy housing,” said Rohini Peris, President of the Environmental Health Association of Québec (ASEQ-EHAQ).

Peris said she spoke to Sophia daily after finding out the woman had applied for and been approved for a medically-assisted death. The Quebec group was assisting Ontario patients with MCS after a similar Ontario organization shut down years ago due to a lack of funding.

“It’s not that she didn’t want to live,” Peris said from her home in Saint Sauveur, Que. “She couldn’t live that way.”

Research shows that many symptoms of MCS dissipate when chemicals are removed from a person’s environment. But, like Canadians across the country, Sophia had to spend a lot of time at home because of the COVID-19 pandemic and related restrictions.

Letters she wrote said that indoor cigarette and pot smoking increased, sending fumes through her Scarborough apartment building’s ventilation system. More chemical cleaners were used in the hallways that worsened her symptoms. She confined herself to her bedroom -- or “dungeon,” as she called it -- for most of the pandemic, sealing the vents to keep cigarette and pot smoke from wafting into her unit.

Sophia’s apartment was run by the Salvation Army of Canada. According to letters Sophia wrote to officials in all levels of government, the apartment was renovated to allow her to live in her bedroom, with the vents sealed to keep smoke from coming in. However, she said the landlord refused other accommodations to supplement the room with heating and air-conditioning.

“My landlord does not believe anything is wrong with me, and refuses to do anything else to help me with regards (to) making this apartment safe for me to live. I have given up hope and have applied for — and now qualify for — MAID,” she wrote.

In an email to CTV News, the Salvation Army said it was “deeply saddened upon hearing of the passing of a former resident at one of our Grace Communities residential apartments. We send our heartfelt condolences and prayers to the family, friends and loved ones at this time.”

When asked about specific allegations Sophia made about her living situation and lack of accommodations, Salvation Army spokesperson Caroline Knight responded: "Thank you for the opportunity to comment – we have nothing further to add."

CTV News also contacted the environmental health clinic at Women’s College Hospital in Toronto, where Sophia was a patient, but the hospital physicians were not available to comment.

Four Toronto doctors were aware of Sophia’s case and they also wrote to federal housing and disability government officials on her behalf. In that letter the doctors confirmed that her symptoms improved in cleaner air environments and asked for help to find or build a chemical-free residence.

“We physicians find it UNCONSCIONABLE that no other solution is proposed to this situation other than medical assistance in dying,” they wrote.

The letter was signed by Dr. Lynn Marshall, an environmental physician, Dr. Chantal Perrot, a family physician and MAID provider, Dr. Justine Dembo, a psychiatrist, and Dr. James Whyte, a family doctor and psychotherapist. The physicians who wrote the letter all either declined to speak to CTV News or did not respond to a request for comment.

“It was an easy fix,” said Dr. Riina Bray, a Toronto physician who treats those with environmental sensitivities. “She just needed to be helped to find a suitable place to live, where there wasn't smoke wafting and through the vents.”

“If people have to go and kill themselves, that would be a very pathetic thing and it will be heard by the rest of the world because it's not acceptable,” said Bray.

The underlying problem is that there is no government agency that is assigned to help people with environmental sensitivities get housing free from chemicals.

Peris said that Sophia’s letters and the one written by the physicians did not generate responses from any of the officials they were addressed to.

In one email to friends, Sophia suggested that her death was, in a way, a show of protest against the lack of response to her and her physicians’ pleas. “If my death helps to show the government that those of us with MCS will keep on having MAID if they don't act soon, then I'm glad I could help someone else not have to suffer the way I have,” she wrote.

WHAT IS MCS?

Environmental allergies are a condition clouded by controversy and disbelief, even in the medical community. MCS can occur either through a single exposure to high levels of chemicals or constant low-level proximity to them. Some people become hypersensitive to common chemicals used in perfumes, cleaners, pesticides and smokes.

A 2014 survey found that about 2.4 per cent of Canadians, or more than 770,000, have been diagnosed by a health-care provider with MCS.

Some people affected have minor symptoms. Others become fully disabled and are unable to work.

MCS is also considered by the Ontario and Canadian Human Rights Commissions to be a disability. However, there is controversy as some researchers think some of the symptoms are linked to anxiety and depression.

Still, there are three dedicated hospital-based clinics in Canada treating MCS, in Vancouver, Toronto and Halifax.

Bonnie Brayton, a disabled rights advocate in Montreal, says she has a sticker with Sophia’s name over her computer, having desperately worked with her to find accommodations and a solution, to no avail.

“She felt desperate to try and do something and she self-advocated harder than anybody I've seen,” Brayton told CTV News.

"She wasn't given choice,” said Brayton, adding that Sophia was living off disability supports and had no means to find a better apartment herself. “Sophia’s death is a tragedy and a shameful mark on this country…It’s less effort to die.”

Friends set up a fundraiser and collected approximately $12,000 to try to help Sophia get better housing, away from chemicals and smoke. But by then Sophia had an appointment to have a medically-assisted death.

“If nothing turns up before FEB 22 please know that it is ok,” wrote Sophia in an email in early 2022. " I already have a way out. I don’t have the energy to fight anymore.”

CASE GETTING INTERNATIONAL ATTENTION

“I find it unbelievable that that happened,” Dr. Claudia Miller, a professor emerita in the department of allergy/immunology and environmental health at the University of Texas, said of Sophie’s death.

Her research is finding biological causes make the immune system overreact in people with environmental sensitivities. The theory is that either one brief exposure to chemicals or repeated low-level contact with them can trigger an allergic reaction that may alter how some immune cells function.

The solutions, she said, are cleaning up the environments to prevent new cases, and making homes and apartments smoke and chemical free. She’s never heard of a patient being granted an assisted death instead of proper housing.

“It's a sad statement. …people are so desperate they do want to die,” Miller said from her home in San Antonio in an interview with CTV News. “I think that's completely an indication of a huge failure…a societal failure. It’s …..such a bad statement about not just Canadian government, but any government that allows that to occur,” she said.

On March 17, 2021, revised MAID legislation came into force that expanded who could ask for assisted death. Before, only those whose natural death was reasonably foreseeable -- called Track One patients -- were considered. These are typically patients with terminal cancer and other fatal diseases. The new law allows those whose natural death “is NOT reasonably foreseeable” to request and be approved for MAID. These are called Track Two cases.

Sophia was in this category. Two doctors must approve the patient’s request and “must consult with a clinician who has such ‘expertise’ in the illness suffered by the patient.”

There is a 90-day waiting period to determine “whether some treatments or services could help to reduce their suffering, such as counselling services, mental health and disability support services, community services.”

"This is a concerning case,” said Trudo Lemmens, a professor of health law at the University of Toronto who is studying MAID expansion in Canada. “I think it highlights the concerns some us have had in expanding medically assisted death.”

These Track Two cases are proving to be very complex for some MAID providers, said Dr. Scott Anderson, an ICU physician in London, Ont., who also provides assisted death. He said he is seeing more patients with chronic conditions asking for assisted death because they can’t get services to live well.

“A lot of times people act out of those things, frustration….despair. They don't know what else to do. So, they take a dramatic step of saying that. What they're really saying is: ‘I need someone to listen to me,” said Anderson. After the required services are provided, he said patients tell him: “let’s put this (assisted death) off for a bit.”

Since word of Sophia’s death has started filtering out to the community of people with chemical sensitivities, more people with MCS are calling Rohini Peris, inquiring about medically-assisted death for themselves. One woman, who is disabled by MCS and is not able to find appropriate housing like Sophia, she says, is in the midst of a MAID application.

“I’m terrified,” said Peris. “I don’t believe this is the answer. I think the answer is to get together and fight the government that they will do the right thing,” said Peris, who is advocating for a national program to build chemical-free homes.

Sophia’s case has prompted Peris’ group to launch a national campaign and fundraiser to get housing for those with multiple chemical sensitivites across Canada.

Edited by CTVNews.ca producer Sonja Puzic