Assisted death, but not on her terms: Audrey Parker is bent on changing Canada’s late-stage consent rule – if only posthumously

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After a decadent breakfast of lobster eggs Benedict prepared by a friend in her modern high-rise kitchen Thursday morning, Audrey Parker plans to tidy up, climb back into her king-sized bed and receive a lethal injection.

Ms. Parker, who lives in Halifax, is three years into a battle with Stage 4 breast cancer she chose to “lean into” rather than resist because of its ravenous spread to her bones and brain. A former ballroom dancer and makeup artist with an affinity for the brand Chanel, Ms. Parker decided immediately after her diagnosis that she wanted to end her life on her own terms. She qualified to do so under Canada’s assisted-dying legislation. That law requires patients to be lucid enough to consent to their own deaths – and Ms. Parker feared she wouldn’t be if she waited too long.

The 57-year-old effervescent divorcee has taken pleasure in scripting what she calls her “dream death,” with the exception of one key element: choosing the actual day she will die. On this, Ms. Parker says her pen was unfairly forced by federal legislation requiring patients to be able to confirm their wish to die moments before a fatal injection is administered.

“All I wanted to do was have a fabulous end-of-life experience on my own terms,” said Ms. Parker, who plans to die Thursday, holding her elderly mother’s hand and surrounded by her best friends, even though she is still full of life. “I would have liked to have really lived until Christmas. But I can’t take the chance of losing my window.”

Ms. Parker’s predicament highlights what some physicians and supporters of assisted dying see as a defect in Canada’s law and it is one Ms. Parker is bent on altering, if only posthumously.

Patients ending their lives are required to give what is known as “late stage consent,” meaning they must be lucid enough to agree to their own death immediately before a doctor or nurse practitioner administers the cocktail of life-ending drugs. If patients cannot give late-stage consent, they cannot, under the law, receive an assisted death.

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Intended as a safeguard, the rule has had unintended consequences. Ms. Parker said it seemed to force early death on her before it really feels like her time is up.

“They’ve literally taken my ability to die on my own terms away from me,” Ms. Parker said of lawmakers. “I have cancer in the lining of my brain. I could wake up tomorrow and I might not be myself. I just don’t know,” she said, adding: “It defies the whole point of the law. People are dying sooner than they need to.”

To avoid that fate, some patients choose to dial back their painkillers before receiving an assisted death to ensure they are fit to consent, a decision that leads to increased suffering, said Jeff Blackmer, the vice-president of medical professionalism for the Canadian Medical Association, which represents doctors across the country.

“That’s obviously a challenge that clinicians are concerned about,” he said. “They don’t want patients to undergo any sort of pain or suffering that could otherwise be avoided.”

Cutting back her cocktail of pain medication – heavy doses of Dilaudid and cannabis – was something Ms. Parker said she could not endure.

“I’m picking to die over going through that pain again,” she said in an interview with The Globe and Mail one afternoon last week between sips of Red Bull, her walls filled with framed art she chose for her funeral, including a depiction of a nearly empty hourglass. "But if they would just let me die on my own terms … I’d figure out the right day.”

Ms. Parker reluctantly but firmly chose Nov. 1. She is haunted by cases of terminally ill patients who were approved for an assisted death but didn’t get one after losing their capacity to consent.

According to Health Canada’s most recent interim report on medically assisted dying, 3,714 legal assisted deaths have been carried out in Canada as of the end of last year. An analysis of why requests for the procedure are turned down in six provinces found that loss of capacity was the reason cited most frequently, followed by the patient’s death not being deemed “reasonably foreseeable,” as the law requires.

Some of the experts who helped to inform Canada’s assisted dying law predicted that prohibiting advance requests would lead to situations such as Ms. Parker’s.

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After the Supreme Court of Canada struck down the Criminal Code prohibition against helping others take their own lives in 2015, a special joint committee of the House and Senate and a provincial-territorial expert advisory group were set up to make recommendations about how the new assisted-dying law should work.

Both groups recommended that the federal legislation allow for advance requests for assisted death in limited circumstances. The panels felt that patients such as Ms. Parker – those whose cases have already been rigorously assessed by two doctors and approved for an assisted death – should be allowed to make advance requests that set out the future terms for their death that wouldn’t be jeopardized as their mental capacity deteriorated.

The panels also recommended that the same permission be extended to people diagnosed with diseases such as dementia, a category of patients that raises difficult ethical concerns.

However, no advance requests of any kind were allowed under the legislation passed by Prime Minister Justin Trudeau’s Liberal government in June of 2016. The legislation included a provision that independent reviewers would be asked to study whether the law should be expanded to cover three types of patients currently excluded: mature patients under the age of 18; patients whose sole reason for seeking an assisted death is mental illness and patients who want to make advance requests to have doctors hasten their deaths.

The Council of Canadian Academies, a federally funded not-for-profit organization, is expected to publish a review of the evidence for all three situations in December. However, the reports won’t make any formal recommendations. They will only summarize the evidence.

Those advocating for changes that would allow advance directives say it is important to distinguish between cases such as Ms. Parker’s and those that involve patients who have been diagnosed with dementia. The latter involve more complex practical and philosophical challenges, including which version of a patient should have the final say, said Hilary Young, a University of New Brunswick law professor with an expertise in health law and informed consent.

“Is it the [predementia] person who didn’t want to be a burden and who valued her cognitive faculties very highly, or the present person who’s quite happy to read the same page of a book every day or watch television?”

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Canada is not the only country grappling with these questions. The Netherlands, Belgium, Luxembourg and Colombia all allow advance requests for assisted death but some have specific rules that limit their use.

However, the complexities wrought by dementia are not a concern in cases such as Ms. Parker’s, which some argue ought to be given more expansive consideration.

“She’s presently suffering and has a good sense of what she’s facing," Prof. Young said. "In that context, it seems almost arbitrary to deny her the ability to make that decision.”

The advocacy group Dying with Dignity Canada agrees. Although the organization also supports advance requests for assisted death for people with dementia, its leaders, along with Ms. Parker’s friends and family, are launching a campaign to change the federal law so that patients who have been approved for an assisted death can get one, even if they aren’t able to consent at the moment of death.

Chief executive Shanaaz Gokool, said they want any amendment to be named Audrey’s Law, in Ms. Parker’s honour.

Ms. Parker would like that too.

“I’m not doing this for me. I’m already out of here. I’m doing this for you guys,” she said. “Let’s all be proactive now. If people just demand this ... we don’t need a debate. Just an amendment to the legislation.”

Ms. Parker said she gave that message to Justice Department officials in a telephone conversation facilitated by Dying with Dignity Canada last week.

“I really pleaded with them. I begged them to lift that late stage consent,” Ms. Parker said. “Life just worked out for me. Everything went my way. It really did. So I want my death to go my way too. I’m not going to rest easy until it’s done."

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