(July 8, 2021) A new charity called MAiDHouse has sprung up to help deal with the practical application of the legalization of medically assisted dying.
When the federal government legalized medically assisted dying in 2016, many of the moral questions had been settled by law, but the practical application was left to emerge. One of those questions, the ‘where’ is being answered by MAiDHouse, which incorporated in January 2018 and received its charitable status in January 2019.
“I am a firm believer of medically-assisted dying,” says executive director, Tekla Hendrickson, “and throughout my career I have always taken on issues that have been tough to talk about.”
Hendrickson has extensive experience, locally and internationally, in managing, operating, and advising not-for-profits in the areas of health promotion, homelessness and women’s rights.
She, alongside fundraiser Caitlin Smith who has previously worked with Canadian Lesbian and Gay Archives, the Aga Khan Museum, Casey House, the Canadian Civil Liberties Association, and PEN Canada, have been tasked with getting the organization up and running. The board of directors is chock-a-block with doctors, lawyers, social workers and other professionals with great interest in seeing MAiDHouse succeed.
Two donors from surviving family members who’d had the procedure have made significant donations to get MAiDHouse up and running.
“Currently, there is no dedicated center in Canada for those eligible to receive medical assistance in dying (MAiD),” says Hendrickson.
Concern about a loved one’s association of their home with death and loss, the fact that many faith-based health facilities do not allow MAiD, the marginally housed do not have a suitable space and family members may not be supportive of MAiD are all reasons people may not be able to die at home.
“Of people eligible for MAiD, one-third cannot find a suitable place in which to die. MAiDHouse wants to create a home-like setting where those who are eligible and want MAiD can experience the death of their choosing.”
Slated for Toronto, the MAiDHouse facility will be the first of its kind in Canada, providing equal access to space for anyone eligible for MAiD.
“Toronto needs an independent facility like MAiDHouse that gives Canadians equitable access to a legal procedure where one’s residence is not a realistic choice. MAiDHouse provides that compassionate choice,” says Dr. Sandy Buchman Palliative Care Physician, MAiD provider and president of Canadian Medical Association from 2019 to 2020.
Board chair Dr. Chantal Perrot, a family physician and psychotherapist in Toronto and key advocate for medical assistance in dying, has been active in choice in health care for over four decades and has been providing medical assistance in dying (MAiD) assessments and procedures to patients since the procedure became legal in July 2016.
“The process of providing medical assistance in dying is not a one-minute procedure,” she says. “It more resembles the journey a midwife takes with her patient. There are several assessments that must take place and phone calls with the family. The procedure must be organized. IVs are required and the medication must be picked up. And I don’t want my patients to suffer or be anxious, so I make myself available to them.”
The federal government had a budget provision for what an end of care system might look like but hospice, palliative care and other systems operate as silos.
Meanwhile, a joint committee of MPs and senators began its first review of the laws on May 17. According to iPolitics “The committee will review the MAiD regime set in place by Bill C-14 and Bill C-7."
Specifically, the Special Joint Committee on Medical Assistance in Dying will "review the provisions of the Criminal Code relating to medical assistance in dying and their application, including but not limited to issues relating to mature minors, advance requests, mental illness, the state of palliative care in Canada and the protection of Canadians with disabilities.”
“It's tasked with answering some heavy questions, such as whether mature minors should have access to medical assistance in dying (MAID) and whether patients should be allowed to make advance requests for the procedure before their suffering becomes intolerable,” according to Ryan Patrick Jones at CBC.
“I am here … because of my mother, because of my grandmother, and because of me,” said joint committee member Senator Pamela Wallin said at a June 9 panel organized by MAiDHouse, as reported by Canadian Lawyer magazine.
“I come to this whole debate from deep personal experience,” Wallin said talking about the history of dementia in her family and how she expects to succumb to a similar fate in future years. “And I would like to have this right [to make an advance care directive], not to go through what my mother and grandmother were forced to go through,” describing how her mother had come to the end of her life without the dignity she deserved.
Yet, aspects of the practical application of the law are moving at a snail’s pace.
And the nagging, unanswered questions is what kind of physical space we are, as a society, willing to prepare for the dying. It’s a simple question currently with no easy answer.
“We have been looking for a space,” says Hendrickson, “We have temporary space until August, but landlords are reluctant to lease to us. They are afraid of their property values decreasing. Our vision is to have a furnished home that can incorporate the unique needs of patients receiving MAiD. That kind of set up would also give us a center for research, education, and training. That’s our vision.”
But first we must lease temporary space she says, and then we will undertake a capital campaign to make our vision a reality.
City TV documented the MAiDHouse's struggle in its June 21 piece, Non-profit struggles to find space for medically assisted death facility.
“To our knowledge, there is no one providing this service,” says Perrot. “No free-standing service. MAiDHouse would be the first.”
“Right now, we are talking to foundations, to the federal government,” says Hendrickson. “A significant amount of our donations come from the surviving families of people who’ve received the service.”
According to a recent Health Canada report, 7,595 Canadians received medically assisted deaths in 2020, up 17 per cent from 5,631 assisted deaths in 2019, which was itself a 26 per cent increase over the previous year.
An example of how charities can spring into existence when a committed group of people see a gap in services to vulnerable Canadians, MAiDHouse is providing a unique service. To donate, visit MAiDHouse.