The advocacy organization Dying With Dignity is urging Ottawa to include a provision for advance consent in right-to-die legislation that would allow people diagnosed with dementia to arrange for physician-assisted death while they are still cognitively competent to make the choice.
Shanaaz Gokool, national campaigns director for the Toronto-based group, said the ability to provide advanced consent for assisted death is critical for people who have been told they have a progressive and eventually fatal medical condition such as Alzheimer's disease.
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"Because here's what we know," Gokool told a news conference Thursday. "Without advance consent, people with a diagnosis of dementia have an incredibly cruel choice — to die a horrific death where they may be bedridden and traumatized because they're unable to recognize anybody ... or choose to end their lives too early before dementia robs them of their own ability to die with dignity."
A poll commissioned by Dying With Dignity and released Thursday suggests 80 per cent of Canadians agree that individuals with a terminal medical condition like dementia should be permitted to consent to assisted death in advance.
The Ipsos-Reid poll of more than 2,500 Canadians, conducted online Feb. 2 to 5, comes as the federal government is in the midst of preparing new regulations for physician-assisted dying, which will become legal in June following a Supreme Court of Canada ruling last February.
Full results of the poll, which are considered accurate within plus or minus 2.2 percentage points, 19 times out of 20, are available online.
Competency an issue
In the Carter vs. Canada case, the high court struck down the Criminal Code ban on assisted dying for those who are suffering intolerably from a "grievous and irremediable" illness and who clearly consent to the termination of life.
"Many people interpret the Carter decision as that an individual must be competent not only at the time of the request, but at the time of death," said Wanda Morris, outgoing CEO of Dying With Dignity Canada (DWDC).
"So we are in danger of passing legislation that only recognizes the right to assisted dying if the individual is competent at the time they die."
A special joint parliamentary committee has been holding hearings on the issue of assisted death and is assembling a report aimed at helping the Liberal government to craft new legislation and regulations.
There is no dignity left to my mother - Barb Brzezicki
Gokool, who will take over as DWDC's new CEO next week, said the Supreme Court ruling did not spell out at what point competency that would allow a person to legally qualify for doctor-aided death had to be established.
"In our perspective, that means that the Carter decision is the floor and not the ceiling when it comes to legislating for the issue of competency," she said.
Barb Brzezicki, whose mother was diagnosed with rapidly advancing early-onset Alzheimer's in 2009, said Canadians told they have dementia should have the right to give advance consent for assisted death — a choice her mother didn't have and for which she is enduring untold suffering.
"Since her diagnosis, she has lost so many memories, words and all of her freedom," said Brzezicki, who cared for her mother until she entered a hospice with round-the-clock care last June.
"There is no dignity left to my mother," she said, overcome by emotion as she described how her mother will cry and scream in apparent agony. "She cannot eat on her own, cannot go to the bathroom by herself, cannot speak, cannot communicate to us exactly what hurts when she's in pain."
It's not clear at what point during the disease process that an advanced directive for assisted death would be acted upon, but Morris said her organization envisages a stand-alone consent form that would explicitly detail the conditions under which death should occur, such as when the person is no longer able to care for themselves, recognize loved ones or communicate.
The attending physician — not a loved one — would decide when those criteria had been met and administer the drugs needed to terminate the person's life, as per their prior request, she said.
Brzezicki said she knows that's what her mother, who's just 64, would have wanted.
"My mom said to me when she was still somewhat lucid: 'If I could figure out a way to kill myself, I would,"' she said.
"And that was just in the summer."