Montrealers argue for right to assisted dying in pivotal court challenge

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During a break in her court proceedings, Nicole Gladu wheeled down a corridor of the Montreal courthouse in the electric wheelchair she was forced to start using last month — a sign, she says, of how quickly her muscles are degenerating.

« I consider myself like a house, where the brick and the mortar are just giving up, » she said.

Gladu, who had polio as a child and later developed post-polio syndrome, says her suffering has intensified, particularly in the past two years, and her body can no longer support her.

« I don’t want to die. I want to stop the suffering, » Gladu told reporters. « The death is not the object, it is the means. »

« For me, living like I am actually, it’s an existence, much more than a life. »

Gladu is one of two Quebecers challenging Quebec’s and Canada’s medical aid in dying laws. They want the right to access a doctor’s help to die, even if they are not yet close to the end of their natural lives.

Closing arguments in the constitutional challenge began Monday before Quebec Superior Court Justice Christine Baudouin.

Gladu, 73, and co-plaintiff Jean Truchon, 51, argue both the provincial and federal laws are too restrictive. 

Canada’s law requires that a person seeking the right to medical aid in dying must be at the point where their death is foreseeable; Quebec’s law is even more restrictive, requiring that a person seeking the right to a medically assisted death be at the « end of life. »

Nicole Gladu, left, and Jean Truchon are challenging the laws restricting access to medically assisted dying. (Charles Contant/CBC)

Gladu believes the concept of « foreseeable death » leaves too much to the interpretation of doctors evaluating each case.

« All my life, it was my … nature to control life as much as I could, » Gladu, a former journalist, told reporters outside the courtroom. « I guess I want to get old the same way. »

Protecting the vulnerable

Lawyers for the federal government have argued that the « foreseeable death » criterion is necessary to protect « vulnerable » people who are suffering from a serious ailment but are not fatally ill from using the law as a way to die by suicide.

But lawyer Jean-Pierre Ménard said during closing arguments Monday the laws don’t define who is a vulnerable person and argued there is a difference between suicide and medical aid in death.

« The action they want to take has nothing to do with suicide, » he said.

It’s « not at all impulsive. »

Ménard said psychological evaluations of his clients have shown that they are able to consent and are not suffering from depression or any other psychological condition that could impair their judgment.

He argues that other provisions in the law already protect those who are vulnerable, as doctors must assess their mental state and determine that they are making an informed choice before granting their approval.

As well, those approved for medical aid in dying must demonstrate their capacity to consent right up until the final moment.

Truchon and Gladu suffer from serious health problems that cause persistent and intolerable suffering, and their conditions have deteriorated significantly, he said.

Truchon, who was not at court today, has cerebral palsy and lost the use of his only functioning limb in 2012. 

Ménard argued that the laws, as written, do not accurately reflect the Supreme Court’s unanimous Carter decision in 2015, which did not include any stipulation that a person must be close to a natural death in order to access a doctor’s help to end their life.

The Supreme Court’s decision said those with a « grievous and irremediable medical condition » should have the right to access medical aid in dying.

The Quebec and federal governments will make their closing arguments in support of the existing laws, once Ménard wraps up his arguments.

That’s expected to take until Feb. 28.

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Halifax woman posthumously calls for fix to Canada’s assisted dying rules

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A Halifax woman who died in November is posthumously calling for an amendment to Canada’s assisted dying laws that would get rid of a requirement for late-stage consent to invoke medical assistance in dying, also known as MAID.

« People like me who have already been assessed and approved are dying earlier than necessary because of this poorly thought-out law, » Audrey Parker said in the video released by Dying with Dignity Canada on Wednesday.

The video was launched Feb. 6, the four-year anniversary of the Supreme Court of Canada ruling in favour of medical assistance in dying. 

But that ruling came with a stipulation: it only applied to competent adults with enduring, intolerable suffering who could clearly consent to ending their lives.

Parker had terminal cancer and chose to die Nov. 1, 2018.

She said she would have liked to have made it to Christmas, but worried that if she became incompetent along the way, she would lose out on her choice of a « beautiful, peaceful and — best of all — pain free death. »

Her amendment to Canada’s assisted dying law would be to allow people who are approved for MAID to continue with their wishes, even if they lose their mental capacity.

« I can assure you that no one chooses death lightly, we just don’t want to suffer anymore, » Parker said.

Parker’s friend, Kim King, said she and other people who were close to Parker have been working with Dying with Dignity Canada to help move the amendment forward. 

They envision an amendment could be something like an additional form or declaration that would clarify what should happen if someone who wants MAID loses mental capacity or becomes unconscious.

King said Parker started thinking about making a video when she found out her cancer was moving to the lining of her brain. It was then they realized Parker could lose her mental capacity and then lose her ability to invoke MAID.

« It was really, really upsetting. It took something that was so comforting to Audrey, you know, to have that control and it took it away. And therefore made her have to take the courageous step to end her life early, » King said.

King said Parker shot the video three days before she died. She said it was Parker’s final message to lawmakers and Canadians.

« It was really having that final poignant message thanking the lawmakers for the fact we even have MAID but clearly pointing out there is a flaw in this law with the late-stage consent. »

King said watching the video is difficult, especially knowing how much pain Parker was in at the time. She said Parker shines in the video because her message was important.

« When you look at the video, Audrey looked beautiful and I think she was really standing in her own power, » King said.

« She never thought she would be an advocate. This was a very unexpected change at the end of her life and she was really, really passionate about it. »

King said she hopes the video will serve as a tool to get Canadians to sign an e-petition on the Dying with Dignity website to send a message to Canada’s justice minister to change the legislation to have Parker’s amendment passed.

She said the e-petition launched Monday and the goal is to get around 15,000 Canadians to add their names to it.

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Hamilton senior in unbearable pain wants assisted dying to save her from nursing home

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At 75, Arleen Reinsborough’s fear of nursing homes has her more determined than ever to seek assisted suicide.

Of course, fear of long-term care doesn’t qualify her for medical assistance in dying.

But Reinsborough is confident her unbearable pain will.

Reinsborough has severe osteoarthritis, asthma, psoriasis so bad that her feet bleed whenever she stands up, and a damaged back and neck that linger from two past car accidents.

But it’s her future that makes her despair the most.

“It isn’t depression that makes me want to die, it’s the fear of living with inhumane, overcrowded conditions, loneliness and lack of hope,” she says, referring to life in a nursing home.

“I’m trying to do all I can to prevent going to long-term care. I believe in quality of life, not quantity of life.”

The homes she says she can afford “are worse than living on the street or living at all.”

Hamilton has 1,717 people on a wait list for a room in a long-term care (LTC) facility, most of them for the cheapest, basic room which costs about $1,848 a month. A private room is $2,640 a month and semi-private runs about $2,228.

The facilities are mandated to provide 24-hour nursing and personal care.

Reinsborough accepts that, as a member of the baby boom generation (born 1945-1965), there will never be enough services because of the size of the aging demographic.

She has a “small, wonderful” family with two adult children who are “stretched to the limit” trying to help care for her, all while working and caring for their own children — two of whom have medical issues, and another has a learning disability.

“How could I ask more of them?”

Reinsborough’s decision to apply for assisted dying was difficult.

“I have chronic illnesses. The only way that ends is very badly,” she says.

“I’m like a prisoner of a war camp I can never escape from, and every day I get a level of pain from four to 10 — every day.

“In other words, it’s torture.”

Her husband of 52 years, John, 82, is not keen on her wish for assisted dying, but he respects it; he understands her suffering.

“The medical profession doesn’t seem to offer too many solutions,” he says. “Either you sit by and watch your wife suffer, or you watch her pass away.”

Their son and daughter, however, are noncommittal, according to John. It is hard for them, because they are younger, to truly know their mother’s pain, he says.

Reinsborough says her children did not want to comment because they wish to remain anonymous.

“This is not an easy route to take but I cannot see any other options and there is a time for all of us,” she said.

Last fall, Reinsborough, fed up with the “torture” she felt, went to the hospital ER and told staff that without more help, she was going to the Jolley Cut to “jump off.”

“I meant it, too … I had even thought to call 911 before I do, so (police) could clear the Jolley Cut and no one else would get hurt,” she says. “I could see no hope in sight.”

She ended up getting three hours of home care per week in order to take a bath and make her bed.

Now, she’s awaiting a referral to a doctor willing to help her die.

“We’ve lost our compassion for seniors,” she says. “We’re not cute. Some people say we also smell. Well, so did they when they were babies.”

Margaret Denton, a gerontologist with the Hamilton Council on Aging, says many seniors feel the way Reinsborough does about long-term care.

“The thought of a nursing home, where they don’t have much control on their life, is threatening …”

Part of the answer lies in more supports for older adults at home, and ensuring quality care in nursing homes, she says.

But Reinsborough feels people no longer see value in seniors, adding, “It’s hard to be human to someone seen as valueless.”

For example, she gives a recent Spectator story about the cancellation of the Seniors Isolation Impact Plan due to a lack of government funding. The program identified seniors “falling through the cracks” and would guide them to community services.

She would like, when there is no other option to a nursing home, to be able to invoke her assisted dying wish.

That could be difficult though because an advance request for assisted death is invalid if she is incapable of making her own decision when the time comes.

“I can’t see myself lying there in a fetal position waiting to die,” she says however.

“There is such a lack of places to die in peace, dignity, and pain-free with gentle care,” she recently wrote the prime minister in a plea to expand assisted dying rules. “All I see ahead of me is poverty, suffering and a lack of caregivers.”

“If assisted suicide is not available to seniors like me, there will be a lot of botched attempts,” which she says will put a strain on hospitals.

Reinsborough cites other serious senior problems — aside from pain and fear of nursing homes — that spur her desire for assisted dying. They include small pensions, medical services that OHIP won’t pay for, and prescriptions not covered by the Ontario Drug Benefit program.

She also says it is impossible to get into senior housing. Reinsborough and her husband live in a small home they can barely afford to rent on the Mountain.

None of those problems will make her eligible for assisted dying, says Dying with Dignity Canada.

CEO Shanaaz Gokool says qualifying is not that simple and that “only a tiny percentage of people will have an assisted death.”

But her organization sees Reinsborough’s type of situation all the time. “Anxiety is amplified by the lack of dignity and the lack of finances,” she says.

People developing dementia, for example, don’t want to end up in a care facility, she says.

But doctors must ensure people meet the eligibility criteria and that their wish for assisted dying “is enduring,” Gokool says.

“At our end of the spectrum (at Dying with Dignity) … our focus is on ensuring the most frail and vulnerable have access to all of their end-of-life options.”

cfragomeni@thespec.com905-526-3392 | @CarmatTheSpec

Photograph by Barry Gray, The Hamilton Spectator

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Democracy is dying. The executioners are our leaders

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If the current state of global democracy is struggling to survive, as new studies indicate, will we feel any better after this weekend’s Group of 20 summit in Argentina?

Not likely. And the reason will be on stark display in Saturday’s closing group photo of the leaders attending the summit.

A balloon depicting U.S. President Donald Trump as a baby was hoisted by protesters outside the Congress building in Buenos Aires, Argentina, ahead of G20 summit of global leaders.
A balloon depicting U.S. President Donald Trump as a baby was hoisted by protesters outside the Congress building in Buenos Aires, Argentina, ahead of G20 summit of global leaders.  (ALBERTO RAGGIO / AFP/GETTY IMAGES)

With despots, dictators and at least one cold-blooded killer among them, it will resemble a rogues’ gallery of pretenders who are working tirelessly — often in the dead of night without us knowing — to undermine democracy in many countries.

Although not a word about this will be uttered at this year’s G20, that is the issue that should be dominating the summit.

In October, a Stockholm-based international institute updated its report on “The Global State of Democracy” — a study of the performance of 158 countries since 1975. It reported an “alarming” decline in the past year in the health of democracy worldwide, warning that “democracy’s global rise has come to a halt.”

According to the study, “the number of countries experiencing democratic decline is now greater than the number experiencing democratic gains,” the first time that’s happened since 1980.

Much of this is due to what it called “modern democratic backsliding,” characterized by political parties or leaders “using legal means to weaken democracy from within.”

Similar conclusions were found in this year’s 12th annual survey of “the state of global democracy” by the U.S. research institute Freedom House.

It concluded that democracy faces “its most serious crisis in decades … as its basic tenets — including guarantees of free and fair elections, the rights of minorities, freedom of the press and the rule of law — came under attack around the world.”

It reported that 71 countries suffered net declines in political rights and civil liberties — including nations such as Turkey and Hungary that “a decade ago seemed like promising success stories.”

The report was also critical of Donald Trump’s America: “The United States retreated from its traditional role as both a champion and an exemplar of democracy amid an accelerating decline in American political rights and civil liberties.”

These are not the issues at this year’s G20 and the reason for this is obvious. The summit is being dominated by the very leaders whose actions in the past year have proved to be such a threat to global democracy.

There is Trump, of course, the leader of the pack. In the two years he has been U.S. president, his efforts to attack America’s key democratic institutions, such as a free press and independent judiciary, have been ceaseless. And they have provided incalculable inspiration and cover for authoritarians and despots in every corner of the globe.

Most of the dominant G20 cast of characters also have blood on their hands. Russia’s Vladimir Putin and China’s Xi Jinping are there, as is Turkey’s Recep Tayyip Erdogan.

But this year’s award for the most notorious leader in attendance surely goes to Saudi Arabia’s Crown Prince Mohammed bin Salman, the alleged mastermind behind the savage killing of Saudi journalist Jamal Khashoggi. Although still willing to accept Saudi money, many leaders will be horrified at the prospect of having to shake his hand.

The fire and fury at this year’s G20 summit will eventually dissipate, but that likely won’t be enough. The underlying malaise threatening the global order will deepen.

A hundred years ago, an exhausted world was celebrating the end of the First World War and was about to begin the Paris 1919 peace conference intended to create a harmonious, modern new world.

Instead, it led to a century of violent and bloody upheaval.

Decades from now, when historians assess the direction of this 21stcentury, will they note that democracy’s fateful death began here in 2018?

Tony Burman, formerly head of CBC News and Al Jazeera English, is a freelance contributor for the Star. He is based in Toronto. Follow him on Twitter: @TonyBurman

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No changes planned to assisted-death law, justice minister says after dying woman’s plea

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Ottawa remains confident in its assisted dying legislation, and doesn’t plan changes despite a Halifax woman’s deathbed plea, federal Justice Minister Jody Wilson-Raybould said Friday.

She said the government feels strongly the two-year-old legislation strikes the appropriate balance between the protection of people’s autonomy and safeguards for vulnerable people.

« We’re not considering changing something in the legislation, » she told reporters.

« We’re confident in the legislation that we brought forward, that it finds the right balance in terms of being able to access medical assistance in dying, protecting the autonomy of individuals to make the appropriate decisions for themselves as well as protecting vulnerable individuals. »

Audrey Parker, a terminally ill Halifax woman, ended her life Thursday with medical assistance, after issuing an impassioned deathbed plea urging lawmakers to change the legislation.

Diagnosed with Stage 4 breast cancer in 2016, the 57-year-old woman had been approved for an assisted death but said the restrictive nature of the law forced her to end her life sooner than she would have liked.

Parker stressed the law had to be changed because anyone approved for a medically assisted death must be conscious and mentally sound at the moment they grant their final consent for a lethal injection.

The issue will be among those considered in a report being drafted by a panel of experts, which is due by the end of the year but is not expected to make recommendations.

« We’re looking forward to receiving those reports back on mature minors, on advance directives, and on mental illness alone as an indicator for medical assistance in dying, and we’ll review those reports when we get them, » said Wilson-Raybould.

She said her heart went out to Parker and her family.

Parker was given a lethal injection and « died peacefully » in her Halifax apartment, surrounded by close friends and family.

« I wanted to make it to Christmas and New Year’s Eve, my favourite time of the year, but I lost that opportunity because of a poorly thought-out federal law, » she wrote in a Facebook post hours before her death.

Audrey Parker, 57, passed away on Nov. 1 at her home in Halifax after advocating for changes to Canada’s assisted dying laws. (CBC News)

She asked people to send emails or texts to their member of Parliament to encourage them to amend the law to help people in her category, which she described as « assessed and approved. »

Meanwhile, Dying With Dignity Canada says it has launched a campaign in Parker’s honour to « restore the rights » of people who have been assessed and approved for an assisted death.

It says she « changed the national conversation » about medically assisted deaths in Canada.

‘An unacceptable burden’

Shanaaz Gokool, CEO of Dying with Dignity Canada, says other Canadians are ending their lives earlier than they would like, or they are refusing adequate pain care to conform with the law.

Gokool says the law places an unacceptable burden on dying people who have been approved for a medically assisted death.

« Our lawmakers have a duty to act to ensure that no one else has to face the same cruel choice that Audrey did at the end of her life, » Gokool said in a statement.

« Unless they act now, many more Canadians will be forced to die earlier than they would like to as a result of this unjust, inhumane rule. »

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