In the three years since medical assistance in dying became legal, more Manitobans have been choosing to end their lives on their own terms.
Provincewide, the number of medically assisted deaths rose fivefold to 138 in 2018, from 24 in 2016.
"I think one of the reasons the numbers are increasing is that word is spreading," said Cheri Frazer of the Winnipeg chapter of Dying with Dignity Canada.
As many as 40 per cent of patients who choose assisted death, such as Deb Mason’s father, Roy Gwiazda, want to end their lives at home. More than half die in hospital and a small percentage of patients die at a hospice.
"One of the very wonderful things is that when the doctor team, the first team, came out, one of the first questions they asked my dad was where he would like to die, and how he pictured it," Mason said.
"So he did choose to die at home, in his recliner chair in his sunroom."
In December 2017, Gwiazda’s immediate family gathered to say goodbye. The 94-year-old, who had cancer, wore his favourite yellow golf shirt, which was bought during his 90th birthday party/10th wedding anniversary celebration in Hawaii.
Mason said it was a supportive experience, right until the last minutes, when a doctor asked the family to leave the room to make sure, in private, that Gwiazda still wanted an assisted death.
"But because my dad is very hard of hearing, we could hear the questions and the responses," Mason said. The doctor asked if Gwiazda knew what they were going to do, and he replied that he did. Then the doctor asked if he was ready now.
"I was ready an hour ago," Mason heard her father say. "That made us smile," she said.
They toasted him farewell.
"He waved at us, and then — then it happened, he closed his eyes," she said. "It was a good day. He was very happy that it came."
Seventy per cent of medical assistance in dying (MAID) patients have cancer.
End-stage organ disease and neurodegenerative diseases are the other most common afflictions suffered by patients who successfully apply for MAID, Shared Health Manitoba said.
Frazer and other Dying with Dignity volunteers support the process by being independent witnesses for the application form. She says she’s sometimes surprised by the number of people who don’t realize assisted dying is legal.
The federal law passed in June 2016, following a Supreme Court decision. A mandatory review is scheduled for next year.
Frazer said there are still many concerns about the law that they hope to address in the review; to improve access for patients with degenerative, capacity-eroding or mental health conditions.
Last year, about 59 per cent of patients who requested MAID in Manitoba were granted access.
Health Canada data for the first 10 months of the year show 20 patients were denied, five withdrew their request, and 57 died before getting approval.
Frazer said people who have Huntington’s disease or multiple sclerosis, for example, might be rejected because their death isn’t "reasonably foreseeable," a condition to apply for MAID.
"They can suffer for decades," Frazer said.
"The law is also really unfair to people who have capacity-eroding conditions," she said, such as metastatic cancer or Parkinson’s.
She cited the case of Audrey Parker from Halifax, who wanted to experience one more Christmas with her family, but decided to move her MAID date up to November to ensure she didn’t lose the ability to legally consent.
"So it’s either die early, when you feel like you don’t need to die, or wait until you lose capacity and suffer," Frazer said.
MAID cannot be included in advanced-care plans before people get sick, Frazer said. That's another issue they plan to bring up in the 2020 review.
So far, people with mental illness are barred from applying, even though there’s no provision in the Supreme Court decision that says MAID is only for physical illness.
"Nor does having a severe mental illness mean that a person is incapable of making a free and informed decision," Frazer said. "Suffering caused by severe mental illness is no less real than suffering caused by a physical illness."
All health care providers in Manitoba are required to provide information on MAID, but some faith-based care providers, including St. Boniface, Misericordia and Concordia hospitals, will not allow it on site.
In 2017, 10 patients had to be transferred out of Manitoba faith-based facilities to receive an assisted death.
"That means painful transfers from one location to another," Frazer said.
MAID was rare in the Southern Health region for the first years after legalization, but in 2018, 11 patients chose it. Nationally, Health Canada data bear out that trend — while in early years the vast majority of MAID procedures were in urban centres, by 2018, 44 per cent were in towns and cities with a population under 100,000.
Manitoba is the only province with a centralized intake team, which travels to patients to provide access. Frazer said that makes it easier than in other provinces.
Patients who are suffering "unbearably" from an irreversible disease or decline can contact their doctor or the provincial MAID team directly. After two independent physicians review a patient's case and they (or a proxy, for those who can't write on their own) fill out a written application, 10 days must pass between the request and the procedure.
Frazer said that wait can be long and painful for patients who aren’t aware it’s required.
"Please don’t wait until your body begins to die before you apply. As soon as it occurs to you that you might like to have this as an option, please contact the (MAID) team," she said. "I’ve seen some horrendous suffering from people who waited too long."
— with files from Caitlyn Gowriluk
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Tessa Vanderhart is interested in everything, but especially local news, health policy and statistics.
Updated on Thursday, July 11, 2019 at 5:21 PM CDT: Full writethrough