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Non-profit struggles to find space for medically assisted death facility

A non-profit organization trying to provide a supportive and home-like setting for medical assistance in dying (MAiD) is struggling to find a permanent location in Toronto.

A first-of-its-kind initiative in Canada, MAiDHouse rented out a room in the city in April and started offering it free of charge to patients, their loved ones and medical staff to congregate for end-of-life procedures.

We have a chair that was donated to us. It is a medical chair, it looks like a lazy boy and it goes full back recline,” executive director Tekla Hendrickson said. “People can bring their own blankets and pillows and flowers and pictures.”

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The group’s current lease runs out at the end of August and they say it’s been difficult to find landlords to work with them.

Many landlords are concerned their property will lose value if they allow people to die in their unit every week. As part of their current agreement, MAiDHouse has had to promise not to make the location of their current room public and they’re only able to use the space one day a week.

“I’ve had to turn people away. I’ve not been able to accommodate them and I’m not sure where those people go,” Hendrickson said.

“We have done everything we can to shake the tree, as we call it, to find a space, so if there’s anyone out there interested in supporting an organization like MAiDHouse and has a space they think is accessible, we’d love to speak to them,” she said. “Can you imagine being told you have a terminal illness or you’re going to die and then you choose MAiD and you still don’t have a place?”

Hospitals are not the solution

This year, Canada expanded access to medical assistance in dying. Now, more Canadians than ever have the right to die on their own terms even if their death isn’t reasonably foreseeable.

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However, most hospitals and palliative care centres with religious affiliations won’t allow for a doctor-assisted death to take place inside their wards.

Also, for some, a hospital is one of the last places they want to die.

Michael Micallef spent much of his adult life travelling from hotel to hotel while on the road for work and didn’t want to spend his final precious moments back in a hotel room.

“If there’s no place to do it, then you have to go to the end of a terrible, terrible death,” his wife Vickie Micallef said.

The Micallefs were married for more than four decades. When Michael was 40, he learned he’d inherited the defective gene associated with Huntington’s disease from his father. The neurodegenerative illness progresses over time, affecting an individual’s motor skills, mood, and even their ability to swallow. Ten years after his diagnosis, Michael began to show symptoms.

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Michael and Vickie Micallef in Prague during happier times. Credit: Vickie Micallef

“I didn’t understand why his personality had changed, that’s the first symptom,” Vickie recalled. “One day his finger started to twitch. Then he tripped and fell off the sidewalk. He was losing his balance. And his posture changed.”

After watching Michael’s father die a slow, debilitating death from the disease in an old age home, the couple discussed options for everything from suicide to euthanasia. They looked at options all over the world, until Canada granted Huntington patients eligibility to receive medical assistance in dying.

“MAiD came just in time,” according to Vickie.

Michael Micallef at his living wake, saying goodbye to friends and family in a friend’s backyard before his MAiD procedure. He was unable to have the procedure at home or the homes of family members. Credit: Vickie Micallef

After consulting with medical experts, Michael was ready to say goodbye. However, their landlord wouldn’t allow for the doctor assisted death to take place in their midtown Toronto condo. They turned to loved ones but Vickie says that didn’t work out.

“My family didn‘t want him to die in any of their homes because they didn‘t agree with MAiD,” she said.

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A friend eventually offered up her backyard for Michael’s procedure.

The couple were also able to hold a living wake for Michael just hours before the 69-year-old passed away. Friends and loved ones came to say goodbye and the couple shared an intimate conversation before letting go.

MAiDHouse says it currently doesn’t receive any government funding. They hope to help as many people as possible by eventually purchasing multiple spaces across the country.