Even at a young age, Edite Flaums knew where she didn’t want to spend her final days.
The 81-year-old Toronto woman remembers the times she and her sisters would visit relatives in long-term healthcare facilities. “We said, ‘We never want to go to places like that, or be taken care of when you’re not really living.’ We never wanted to be a burden on society.”
But by 2017, Flaums’s younger sister Ieva spent her final months in the last place she wanted to be: a long-term care home north of Toronto.
Two years since medically assisted dying became law in Canada, advocates said significant barriers remain to allowing people to die in the kind of surroundings they want. For some, where they want to die isn’t where they’re compelled to die.
Now, a group of healthcare professionals have launched a fundraising campaign to help purchase a piece of property in the Toronto area to offer patients wanting an assisted death a home-like setting for their final days.
The fundraising efforts came too late for Edite Flaums’s sister. In 2012, Ieva was diagnosed with progressive supranuclear palsy, a rare brain disorder that is often mistaken for Parkinson’s disease because the symptoms are similar.
“She suffered terribly. Her head and her body were not working together. She would get these seizures, these cramps,” said Flaums. “Her biggest fear was ending up like them … moved from wheelchair to bed … and they don’t respond to anything,” she said. “Is that living?”
Flaums believed her sister wanted to die, and mentioned medical assistance in dying. “I said, you know, there is a legal way to do this, and she said, ‘Oh, tell me about it.'”
Medical assistance in dying (MAID) became legal in Canada in 2016. Among the law’s eligibility criteria is that a death has to be reasonably foreseeable.
Flaums said her sister requested MAID and met the criteria. Eventually, two doctors signed off on her wishes. But there were hurdles before she got her final wish. The facility where she was living did not allow MAID to be performed on the premises. So Flaums’s sister had to be transferred to a hospital that allowed the procedure.
“Family doctors, who are MAID providers, are struggling at times to find a suitable location to perform a MAID procedure,” said Tom Foreman, a healthcare ethicist in the Toronto area. The home isn’t always ideal, he said because families of patients may be uncomfortable with the death happening there.
Some healthcare facilities, like the one where Flaums’s sister stayed, don’t allow the procedure, either for cultural or religious reasons. Hospitals can be noisy and busy. “We know doctors and families have rented hotel rooms for the procedure,” he said.
A compassionate place in the final hours
Enter MAIDHouse. Its backers say it’s first of its kind in Canada: a space where patients wanting an assisted death would spend their last hours together with family and friends. Foreman is part of the fundraising group involved in getting the project off the ground. “This really is about how can we expand the choice for people in this situation in a way that is sensitive and compassionate and appropriate.”
Foreman said MAIDHouse won’t be a healthcare facility; instead it will be an access and resource centre. “So a physician who is struggling to find an appropriate place to perform MAID can come with their patient to this space.”
The group approached the Ontario government several months ago to discuss the project hoping for some funding to help cover costs in the first year. So far, said Foreman, “We have not even had a ‘thank you, no thank you’ response from them. They’re just refusing to engage in a conversation with us.” It’s disappointing, he said, especially since the project would meet several of the government’s own stated goals.
A home for patients seeking a medically assisted death would take pressure off the acute-care system, be more patient focused, and help ease overcrowded hospitals, said Foreman. According to recent statistics from the Canadian government, about 40 per cent of all assisted deaths occurred in hospitals.
‘She went quietly to sleep’
For its part, a spokesperson with Ontario’s Ministry of Health and Long-Term Care said the proposal is under review and no decisions have been taken at this time.
“There’s no reason to dance around it,” said Foreman. “The practice of MAID is morally contentious and we accept that not everybody will agree with the practice. We are sensitive to that and are keeping that in mind when looking for a location.” Depending on how fundraising goes, the group hopes to open its doors later this year.
He envisions a franchise, not just in Toronto, but across the country. “We’ve already had expressions of interest from Ottawa, Montreal and Calgary in terms of replicating the model that we are creating here in Toronto.”
Edite Flaums is all in favour for such a project, and knows her sister would have been as well. “She would love it. Because going to the hospital [to die], it was hard for her, physically it was hard.”
On Dec. 5, 2017, Flaums’s sister received a medically assisted death in a Toronto-area hospital. “They gave her the lethal injection and she just quietly went to sleep and that was it.”
This story originally appeared on CBC