The next frontier in the ‘right to die’: advance requests, minors and the mentally ill

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Canadians are walking into new territory on the right to die, commencing a debate over whether Parliament should allow minors and the mentally ill to end their lives with the help of a doctor.

Just days before breaking for the holidays, the Liberal government received three expert panel reports from the Council of Canadian Academies which looked at the possibility of extending medical assistance in dying (MAID) to ‘mature’ minors — people under age 18 considered by doctors to be capable of directing their own care — people with psychiatric conditions and those making requests in advance.

The reports don’t offer specific recommendations, but are intended to guide discussion around potential legislative changes.

Shanaaz Gokool, chief executive officer of the advocacy group Dying With Dignity, said the restrictive law passed by Parliament two years ago has led to unnecessary suffering, forcing people to end their lives before they’re ready to go.

She said it’s time for the government to ease the rules, especially those around personal consent.

Right now, someone who already has been assessed and approved for MAID must give consent a second time right before undergoing the life-ending procedure. Some Canadians, like Audrey Parker of Halifax, have decided to end their lives early because they fear losing the capacity to consent — a situation Gokool describes as « a bit perverse. »

« The tragic irony is that the law should allow for people to live the longest they can, the best quality of life they can, » she said.

Parker drew national attention to the issue of advance consent, raising public awareness in the final weeks of her life. Breast cancer had spread through her bones and to her brain, and she feared she would lose the cognitive capacity required to carry out her medically assisted death when the time came.

Audrey Parker, 57, ended her life earlier than she wanted to because of restrictions under Canada’s medical assistance in dying laws. (Kayla Hounsell/CBC)

When she died, she left federal lawmakers with a plea to drop the requirement that someone approved for a medically assisted death must be conscious and mentally sound in order to give final consent.

Parliament passed landmark federal legislation allowing Canadian adults to request medical assistance in dying in June 2016, following a Supreme Court of Canada ruling that struck down the longstanding ban as unconstitutional.

‘Grave tragedy’ to expand access

The law was criticized by some who argued it’s too restrictive. Applicants must be at least 18 years old and mentally competent, and natural death must be « reasonably foreseeable. »

Critics, including many religious groups, opposed the law because they believe it diminishes the sanctity of life.

The Conference of Catholic Bishops said the church is against all forms of assisted death and suicide, calling it « contrary to the most profound natural inclination of each human being to live and preserve life. «

« Expanding euthanasia and assisted suicide to include minors, the mentally ill and advance directives would be a grave tragedy for all Canadians, » spokeswoman Lisa Gall said in a statement to CBC.

The Evangelical Fellowship of Canada also rejects MAID and warns that even the most stringent safeguards would not eliminate the « unacceptable risks » if it were extended to mature minors or people with psychiatric conditions.

« Instead, we believe our focus as Canadians must be on extending and improving the availability of high quality palliative care for patients facing terminal illness, or who are nearing the end of life, as well as improving the availability and quality of treatment for individuals suffering from mental illness, » said public policy director Julia Beazley in a statement.

Certainty a challenge

Jennifer Gibson, a bioethics expert who chaired the working group on advance requests, said people might choose to make an advance request if they have dementia or a progressive disease such as Parkinson’s.

She said the critical challenge would be for family members and physicians to determine the right time and circumstances that would satisfy the patient’s wishes regarding the circumstances of death.

« This could be very difficult for individuals when there is that level of uncertainty, » Gibson said. « Correspondingly, it might also be a comfort for family members who have watched their loved one suffer over a period of time. »

The report on advance consent says the person requesting it would have to specify exactly what conditions they would consider intolerable, such as being bedridden, failing to recognize family members, difficulty breathing or pain. But those foreseen circumstances may not reflect the lived experience when the person reaches that point, the report said.

Belgium, Colombia, Luxembourg and the Netherlands all permit some form of advance directives, though their use is rare. There is little scientific evidence on how well advance directives work in practice, the report said.

Small uptake for mature minors

Dawn Davies, a palliative care physician at the Children’s Hospital of Eastern Ontario (CHEO) who led the working group on mature minors, said evidence shows that some minors could capably make the decision to end their own lives, while others could not — a situation common in youth health care across the board.

« That’s where practitioners need to be careful and focus their attention and really scrutinize the young person’s capacity to make a decision, » she said.

Even if MAID were extended to mature minors, Davies predicts uptake would be « quite small. »

The Netherlands and Belgium are the only two countries that allow assisted death for minors, and there have been only 16 reported cases since 2002.

The report said that while giving mature minors control over their deaths might alleviate pain and suffering, it could also have the unintended consequence of making terminally ill minors feel pressure to request MAID in order to protect their families from financial or emotional distress. Another concern raised by the panel is that it might normalize suicide among young people.

Canadian courts have wrestled with cases of minors wishing to withhold or withdraw potentially life-saving or life-prolonging treatment, but there have been no cases of minors requesting MAID to date.

Mental illness and the right to die

Mental illness is another problem area for assisted death policy.

All Canadian adults, including those with mental illnesses, have the legal capacity to make their own medical decisions — unless a formal assessment by a healthcare practitioner shows they lack decision-making capacity.

The working group focusing on this area said the desire to die is a symptom common to several mental disorders, even in cases where a person retains decision-making capacity.

In the Netherlands and Belgium, most requests based on mental illness come from people suffering from depression. Other conditions cited in assisted death cases include personality disorders, schizophrenia and post-traumatic stress disorder, as well as anxiety disorders, eating disorders, autism and prolonged grief disorder.

Kwame McKenzie, a mental health physician who led the working group on MAID and mental illness, cautioned that much more study and research must be done before Parliament makes any change to the law. Information from other jurisdictions can’t be compared to Canada, which is a distinct culture with different health services and its own set of values, he said.

Thousands choose assisted death

While most clinicians have had patients with chronic, untreatable mental illnesses, McKenzie said no one can be completely certain that a mentally ill patient is never going to get better.

« It’s not clear that we have ways of measuring peoples’ capacity to make decisions that are robust enough so that we wouldn’t make mistakes one way or the other, » he said.

Justice Minister Jody Wilson-Raybould is reviewing reports from the Council of Canadian Academies on three sensitive areas regarding medical assistance in dying. (Justin Tang/Canadian Press)

In the first two years since Quebec’s assisted death law and the federal legislation came into force, 3,714 Canadians received medical aid in dying, accounting for just more than one per cent of all deaths in the country.

Cancer is the most common underlying medical condition in reported assisted death cases, cited in about 65 per cent of all medically assisted deaths, according to the most recent report from Health Canada.

A special parliamentary committee recommended that mature minors and mentally ill people should not be excluded from the right to doctor-assisted death. In a 70-page report in 2016 called « Medical Assistance in Dying: A Patient-Centred Approach, » the committee said Canadians should also have the right to make an advance request after being diagnosed with certain debilitating — but not necessarily terminal — conditions.

The Liberal government opted for a more restricted approach initially, vowing to study other categories.

Justice Minister Jody Wilson-Raybould and Health Minister Ginette Petitpas-Taylor are now taking time to review the reports on the areas now excluded in the law, but could not provide a timeline for any possible changes.

« We won’t speculate on next steps, » said Wilson-Raybould’s spokesperson Célia Canon.

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‘I don’t want to die alone in an alley’: Finding sanctuary at the Moss Park Overdose Prevention Site

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« I’ve lost 11 friends this year … most people don’t lose that many in a lifetime. »

Dave Gordon reflects on the toll drugs have taken on the people in his life as he sits at the Moss Park Overdose Prevention Site sketching in his notebook. He’s been on and off opioids himself for decades.

« I don’t want to lose any more friends. »

More than 9,000 people have died from accidental overdoses in Canada since January 2016 — 2,000 of them in the first half of 2018 alone, according to numbers released by the Public Health Agency of Canada.

While Canada struggles with a relentless and deadly opioid crisis, places like the Moss Park site in Toronto offer help. They allow people to bring their drugs inside and safely use them under the supervision of trained staff.

CBC News was granted rare access to spend some time at the government-sanctioned Overdose Prevention Site and meet people who work there, as well as those who use it.

Gordon knows what’s driving the grim statistics around opioids only too well. He has overdosed, and described it as, « the most horrible feeling in the world. Feeling like my life was slipping away. I had no control. »

Dave Gordon sketches at a table in the Moss Park Overdose Prevention Site. (Evan Mitsui/CBC)

He now spends his time at the Moss Park site — partly to use safely, but also because it’s a place to be with friends and it has allowed him to re-discover his love of drawing.

Gordon is also giving back, handing out harm-reduction safety kits in the neighbourhood to help others in the community.

I’m trying to pay society back for my mistakes.– Dave Gordon

« I’m trying to pay society back for my mistakes. »

The Public Health Agency of Canada says 72 per cent of accidental overdose deaths this year involved fentanyl. And a lot of them happen when people use drugs alone.

« So when people come here they feel safe. They feel supported, » says Sarah Greig, an overdose response worker at Moss Park. « They don’t feel shamed and blamed and stigmatized, as they have been by their family, by some health care providers and by some social service providers. »

Greig says the people who come to Moss Park are more like friends, and they are building a community.

The overdose prevention site began as an unsanctioned, volunteer-run outdoor tent in Toronto’s Moss Park. It had over 9,000 visits and reversed more than 200 overdoses between August 2017 and June 2018.

Medical supplies at Moss Park. The site has been seeing more than 100 visitors a day and reversed more than 50 overdoses since it received provincial funding in July.

After becoming a satellite of the South Riverdale Community Health Centre, the site received provincial funding and an exemption through the provincial OPS program, allowing it to move indoors in July this year.

Since then, it has had thousands more visits — over a hundred a day — and reversed more than 50 overdoses.

The future of these sites remains uncertain, however, as local and provincial governments grapple with their pros and cons and who will fund them.

Moss Park’s government funding is set to expire on Dec. 24. The organizers have re-applied, but the province is imposing stricter regulations on where overdose sites can operate, which could jeopardize the Moss Park operation.

The fact that the site might be shut down worries Akosua Gyan-Mante.

« We need more places like this, » says the 26-year-old, a regular at Moss Park. « I don’t want to die alone in an alley. »

The Moss Park site ‘is giving me a fighting chance,’ says heroin and fentanyl user Akosua Gyan-Mante. (Evan Mitsui/CBC)

Gyan-Mante never thought she would be a drug user — growing up in B.C. in a home with a loving father, she had dreams of being a doctor. She moved to Toronto six years ago, started college and had a son.

Then things fell apart. She began injecting heroin and fentanyl this summer after her boyfriend introduced her to it.

« I’m lonely and depressed, and it makes me feel better, » Gyan-Mante says, explaining that drugs help numb the emotional pain.

She overdosed at the site this past October. Greig was there to reverse it.

We need to nurture people and we need to point out people’s strengths instead of just identifying their weaknesses.– Sarah Greig

« We need to nurture people and we need to point out people’s strengths instead of just identifying their weaknesses, » Greig says, adding that people use drugs for a wide range of things.

« This is my support system right here … [the hope that this] shitty existence will get better, » says Gyan-Mante as she hugs Greig, wiping a tear from her eye.

« It [the site] is giving me a fighting chance. It gave me life. It’s giving me another day, another week, another month of being OK. »

Gyan-Mante, centre, overdosed at the Moss Park site this summer. Front-line response workers Sarah Greig, left, and Tony, right, reversed the overdose. (Evan Mitsui/CBC)

Far from just a place to use drugs, the site also offers a hot meal provided by donations, a warm place to hang out during winter, and information on support services if people want them.

The site operates from noon to 6 p.m. and is closed on Mondays.

« I hate Mondays, » Kevin Drake says as Greig watches him use heroin. « I’ve been to different sites. And this is the best. »

Drake says he has overdosed 15 times in his life. But when he is at Moss Park, he does not feel shame.

Instead, it’s replaced by pride. He is known as a guy who is always cleaning up, mopping floors and organizing the space, making sure it looks its best.

Sarah Greig watches Kevin Drake as he prepares a dose of heroin, to make sure he doesn’t overdose – and so she can take immediate action if he does. (Evan Mitsui/CBC)

« I do worry, but I use Fentanyl … that’s why I come here. That’s why I choose not to do it by myself. Because here — you’re guaranteed to leave here alive. »

The site offers safety, and it also harbours stories of hope.

Drake got a job shortly after CBC’s visit. Gordon is being asked to speak at universities about his experiences, to help find solutions to community drug issues. Gyan-Mante is hoping to reunite with her son permanently.

And that hope is exactly the point of these sites, Greig says.

« When I reflect and I think about what I’ve been doing for the past decade, a lot of it is actually nurturing people and pointing out their worth. Convincing people that they are worthy of love and affection, and that they can do anything that they want to do. »



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10 people die from illicit drug overdoses every day in Canada, study suggests

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An average of 10 people died from an illicit drug overdose every day in Canada in the two years leading up to March 2018, according to a federal analysis aimed at giving a better picture of those at greatest risk from the burgeoning overdose crisis.

The Public Health Agency of Canada study shows those who died ranged from employed people who never had contact with the justice, social assistance or hospital systems to those with little work history and long-term legal and social issues.

The new analysis, released Tuesday, examines the social and economic backgrounds of those who died from drug overdoses in B.C., where the agency says the national overdose crisis is most acute.

Sarah Blyth, who pioneered the model for many overdose prevention sites in Vancouver, said many overdose deaths come down to a loss of hope.

« The more bad experiences a person has in their life, the more hopeless they feel and the less likely they might be to care, » said Blyth, who co-founded the Overdose Prevention Society in 2016.

« If you’re living in an alley and everything’s going wrong, your life continues to spiral in a way where there’s nothing positive. »

Sarah Blyth co-founded the Overdose Prevention Society and, along with a group of volunteers, has set up unsanctioned, pop-up supervised injection sites. (Rafferty Baker/CBC)

Deaths have doubled 

The analysis showed that in B.C., the number of people who died of an illicit drug overdose more than doubled over five years — from 293 in 2011 to 639 in 2016.

Nearly 75 per cent of those who died were men between the ages of 25 and 54, and most overdoses happen when people are using alone indoors, the study showed.

Paramedics respond to an overdose in Vancouver’s Downtown Eastside in 2016. (Natalie Clancy/CBC)

Almost a quarter of those who died visited an emergency room in the year before their death. Around 17 per cent of those hospitalizations were for opioid poisoning or mental health issues.

Blyth said it’s common for users who seek treatment to be back on the street within a week.

Mental health disorders

The B.C. Coroners Service has previously said more than half of those who died from drug overdoses in B.C. in 2016 and 2017 had been diagnosed with a mental health disorder or had evidence of being mentally ill.

In September, chief coroner Lisa Lapointe said it’s clear only a « hodgepodge » of services are available when it comes to mental health in B.C.

« We know from speaking with families of those who died that many times families are beside themselves trying to find help for their loved ones and trying to find help perhaps in that window of opportunity where the individual is looking for help or willing to accept help, » Lapointe said.

B.C.’s chief coroner Lisa Lapointe has said ‘we wouldn’t be seeing the deaths we’re seeing … if not for fentanyl.’ (CBC)

Employment status

The analysis found only a quarter of people who died from drug overdoses were employed in their last five years of life. Those who did have a job made a little more than $28,400 — less than half the B.C. average.

About a fifth of those workers had jobs in construction, with 13 per cent working in building maintenance, waste management and other support service industries. 

Around 40 per cent of those who died of an overdose didn’t receive any social assistance benefits in their last five years.

Police contact up

The majority of people who died of an illicit drug overdose didn’t have any contact with police in their last two years of life.

Those who were accused of a crime in their last two years were most often accused of shoplifting. One-third of those died within three months of that police contact.

Blyth said drug users’ interactions with police and other officials need to be less about criminalization and more about getting help.

« They need help. You can do that by not having police arresting drug users all the time and sending them on to be treated in a health-based way, » Blyth said Tuesday.

« All of it points to safe drug supply, more detox, more decriminalization. »

With files from Yvette Brend and The Canadian Press

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