The Trudeau government has agreed with the Senate that Canadians suffering solely from grievous and incurable mental illnesses should be entitled to medical assistance in dying — but not for another two years.
The two-year interlude is six months longer than what was proposed by senators.
The longer wait is one of a number of changes to Bill C-7 proposed by the government in response to amendments approved last week by the Senate.
The government has rejected another Senate amendment that would have allowed people who fear being diagnosed with dementia or other competence-eroding conditions to make advance requests for an assisted death.
It has also rejected one other amendment and modified two others in a motion that is to be debated today in the House of Commons.
If the Commons approves the government’s response, the bill will go back to the Senate, where senators will have to decide whether to accept the verdict of the elected chamber or dig in their heels.
Government proposes expert review
Bill C-7 would expand access to assisted dying to intolerably suffering individuals who are not approaching the natural end of their lives, bringing the law into compliance with a 2019 Quebec Superior Court ruling.
As originally drafted, the bill would have imposed a blanket ban on assisted dying for people suffering solely from mental illnesses.
A strong majority of senators argued that the exclusion was unconstitutional. They said it violated the right to equal treatment under the law, regardless of physical or mental disability, as guaranteed in Canada’s Charter of Rights and Freedoms.
They voted to impose an 18-month time limit on the mental illness exclusion, which the government now wants to extend to two years.
WATCH | Changes to medical assistance in dying bill for dementia, mental illness up for debate
Senate amendments to the medical assistance in dying bill would make it easier for Canadians with mental illness or the prospect of dementia to get help ending their lives. But as those changes are debated there are concerns a sensitive subject will become a political football. 2:19
During that interlude, the government is also proposing to have experts conduct an independent review of the issue and, within one year, recommend the “protocols, guidance and safeguards” that should apply to requests for assisted dying from people with a mental illness.
In the meantime, senators had wanted to clarify that the exclusion of mental illness does not apply to people with neurocognitive disorders like Alzheimer’s disease. However, the government has rejected that amendment.
In rejecting advance requests, the government motion argues that the Senate amendment on that issue “goes beyond the scope of the bill” and requires “significant consultation and study,” including a “careful examination of safeguards.”
It suggests that the issue should be examined during the legally required five-year parliamentary review of the assisted dying law, which was supposed to begin last June but has yet to materialize.
The government has agreed, however, to a modified version of a Senate amendment to finally get that review underway within 30 days of Bill C-7 receiving royal assent.
The government is proposing the creation of a joint Commons-Senate committee to review the assisted dying regime, including issues related to mature minors, advance requests, mental illness, the state of palliative care in Canada and the protection of Canadians with disabilities. The committee would be required to report back, with any recommended changes within one year.
Court-imposed deadline looms
The government has also agreed to a modified version of another Senate amendment to require the collection of race-based data on who is requesting and receiving medical assistance in dying.
It is proposing to expand that to include data on people with disabilities and to specify that the information be used to determine if there is “the presence of any inequality — including systemic inequality — or disadvantage based on race, Indigenous identity, disability or other characteristics.”
That is in response to the strenuous opposition to Bill C-7 from disability rights advocates who maintain the bill sends the message that life with a disability is a fate worse than death. They’ve also argued that Black, racialized and Indigenous people with disabilities — already marginalized and facing systemic discrimination in the health system — could be induced to end their lives prematurely due to poverty and a lack of support services.
Some critics have also raised concerns about unequal access to assisted dying for marginalized people, rural Canadians and Indigenous people in remote communities.
Since the Liberals hold only a minority of seats in the Commons, the government will need the support of at least one of the main opposition parties to pass its response to the Senate amendments.
The Conservatives, who largely opposed expanding access to assisted dying in the original bill, and New Democrats, who are reluctant to accept any changes proposed by unelected senators, have indicated they’re not likely to support the motion.
That leaves the Bloc Québécois as the government’s most likely dance partner. Despite his own contempt for the Senate, which he maintains has no legitimacy, Bloc Leader Yves-François Blanchet, has said senators’ amendments to C-7 are “not without interest and indeed deserve to be looked at.”
The government is hoping to have the bill passed by both parliamentary chambers by Friday to meet the thrice-extended court-imposed deadline for bringing the law into compliance with the 2019 ruling.
But with the Conservatives signalling that they may drag out debate on the Senate amendments, the government will ask the court on Thursday to give it one more month — until March 26.
In mid-January, an unsettling report from Norway suggested 23 frail, elderly patients had all died after receiving a dose of a COVID-19 vaccine.
The finding made headlines around the world.
Meanwhile, here in Canada, there have been instances of coronavirus infections and deaths in the midst of initial vaccination efforts targeting residents of long-term care.
A home in Saskatoon where the vast majority of residents had received their first vaccine dose later reported seven cases of COVID-19. And a facility in Barrie, Ont., is in the grips of a facility-wide outbreak that has caused dozens of deaths due to a fast-spreading virus variant — even as public health officials raced to fully vaccinate all the residents while the outbreak progressed.
But in all these instances of seniors falling ill or dying after receiving at least one dose, dire-sounding headlines don’t tell the whole story, experts say.
“Just because somebody died after receiving the COVID vaccine does not mean the COVID vaccine caused the death,” said Dr. Noni MacDonald, a researcher focused on vaccine safety who is also a professor at Dalhousie University’s department of pediatrics in Halifax.
In the case of outbreaks in long-term care homes, it’s important to remember that while one dose offers some level of protection, it’s not the full amount that results from the two-dose regimen for either of the vaccines currently approved in Canada, said Dr. Samir Sinha, director of geriatrics at Mount Sinai Hospital in Toronto.
That means even if residents get partially vaccinated, it might not be enough to protect them if the virus is spreading where they live.
“There might have been a high level of COVID circulating, and they didn’t have enough protection within days of their very first dose to confer immunity at that point,” he said.
Canadian physicians also stress COVID-19 vaccines are proving overwhelmingly safe and protective for the majority of elderly recipients — a population that’s at the highest risk of dying from the illness.
“We are now hoping that as soon as we get people vaccinated, especially in these care settings, that we’re really going to see the burden of disease — and the resulting burden of death — stopped,” Sinha said.
No unexpected death increase, WHO concludes
In Norway, the deaths of those 23 elderly vaccine recipients happened during the course of more than 20,000 Pfizer-BioNTech doses being administered over several weeks — not all in one go — and in a country where around 400 deaths normally occur among care home residents on a weekly basis.
Following a review of the deaths, which later totalled more than 30, the World Health Organization concluded there was actually no “unexpected” increase in deaths of frail, elderly individuals or any unusual adverse events following the vaccinations.
WATCH | Dr. Samir Sinha on the safety of COVID-19 vaccines for seniors:
Dr. Samir Sinha, a Toronto geriatrician, says reports of elderly people passing away soon after receiving a COVID-19 vaccination can be misleading. Often these are instances where someone was already nearing the end of their life, not that their death was hastened by a vaccine. 0:44
In fact, the vaccine did not play a “contributory role” in the fatalities at all, the panel found.
It’s a finding that comes as tens of millions of COVID-19 vaccine doses are being administered in countries around the world, including to millions of seniors, with the clear protective benefits against severe infections so far outweighing minor risks such as allergic reactions in rare instances.
“We’re just not seeing the data showing that the vaccine is hastening anybody’s death,” Sinha said.
However, an earlier investigation from the Norwegian Medicines Agency, Norway’s national medical regulatory authority, did note that common adverse reactions of mRNA-based vaccines, such as fever, nausea and diarrhea, may have contributed to some of those deadly outcomes in the Norweigian patients.
Canadian physicians do agree immune system responses to a vaccine could indeed prove dire, but only for the most frail of elderly individuals who are already approaching their death based on their age and pre-existing health issues.
That could mean someone immobile, largely bed-bound and in the end stages of dementia, explained geriatrician Dr. Janet McElhaney, the scientific director of the Health Sciences North Research Institute and a professor at the Northern Ontario School of Medicine in Sudbury, Ont.
“Those are not the people that we want to be vaccinating, as they are unlikely to tolerate that.”
For someone severely frail and dehydrated, even a short bout of diarrhea can be dangerous to their health, she said.
WATCH | Why there’s new urgency for vaccinations in long-term care homes:
Faced with a COVID-19 vaccine shortage, Ontario says it will now vaccinate only long-term care residents and other seniors in at-risk retirement homes and care settings. 2:54
At the same time, it’s a delicate balancing act, since those frail seniors could even more easily die from COVID-19, said Tara Moriarty, an associate professor at the University of Toronto and co-founder of COVID-19 Resources Canada.
“This is something that decision-makers would weigh very, very carefully with the physician or the care provider,” she said.
But both McElhaney and Moriarty stressed those individuals are among a small minority of long-term care residents.
COVID-19 disproportionately deadly for seniors
For the vast majority of Canadian seniors, including those living in long-term care or in the community, medical experts maintain the protective benefits of COVID-19 vaccines far outweigh any minimal risks.
Across Canada, nearly 20,000 people have died of COVID-19 since the pandemic began, the vast majority of whom were over the age of 60 — including 70 per cent aged 80 and older.
That’s why long-term care residents are near the front of the line as public health officials ramp up vaccination efforts, as both their age and congregate living conditions put them at higher risk.
Health complications from COVID-19 a concern for seniors
But as reports of deaths post-vaccine keep causing confusion among some seniors, Moriarty is now among those concerned it might prompt vaccine hesitancy among the very population who would benefit most.
“There have been no deaths that have actually been associated with these vaccines whereas there are a lot of deaths among people who are diagnosed with COVID,” she said.
And as McElhaney points out, death isn’t the only concern with COVID-19. Even if a senior survives the illness, they run the risk of serious complications, be it lingering health issues or life-changing impacts from a stay in intensive care.
“The most compelling reason for older people to get vaccinated is to prevent a loss of independence, their abilities,” she said. “So, it’s a quality of life decision.”
According to MacDonald, wary Canadian seniors need to understand where the highest risk exists — and that’s definitely from falling ill with COVID-19, not getting vaccinated against it.
“So, which door do you want to go through?” she said.
“The door that has a probability of you not getting COVID, and saving your life, however long that may be? Or do you want to go through the COVID door?”
Whether you support it or are against it, one thing is for certain — medical assistance in dying, or MAID, is a complex, multilayered and deeply personal issue.
Canada’s Parliament passed Bill C-14 in 2016, legalizing assisted dying. Since then, more than 13,000 people have chosen to end their lives that way.
However, a Quebec Superior Court decision struck down the “reasonably foreseeable death” clause in Bill C-14 as unconstitutional, forcing the government to amend the law earlier this year.
The amended law, known as Bill C-7, was tabled on Feb. 24. The proposed changes address, among other things, concerns around who is eligible for MAID, the role of palliative care, and the role of consent.
A full review was scheduled to begin this summer, but has been delayed due to COVID-19. The pandemic has also had an impact on the delivery of MAID across Canada as some hospitals temporarily restricted services, and personal protective gear (PPE) and physical distancing requirements added a layer of complexity to the procedures.
Canadians across the country still have many questions about who can access medical assistance in dying, and when. After the government tabled Bill C-7 in February, The National co-host Andrew Chang and members of the public put some of those questions and concerns to experts in a CBC town hall as part of an important yet difficult conversation. The expert panellists included:
David Lametti, Minister of Justice and the government’s lead on the MAID file
Madeline Li, former head of MAID at University Health Network
Trudo Lemmens, professor and Scholl Chair in Health Law and Policy in the Faculty of Law at the Dalla Lana School of Public Health, and the Joint Centre for Bioethics at the University of Toronto
Susan Desjardins, Dying With Dignity Canada
The National Conversation on MAID was recorded on March 5, 2020, but due to the pandemic it was delayed and aired on The National on July 16 and on CBC News Network on July 19. These are some highlights from the town hall.
Phyllis Fehr is 60 years old, and a former intensive care nurse. She was diagnosed with Alzheimer’s seven years ago. While the diagnosis was difficult for her to accept initially, she does not let it stop her from living and ending her life her way.
Fehr asks: “How will the medical system ensure that there are enough safety checks in place that I will indeed receive MAID when I am near death, and not too soon before I am ready?”
Madeline Li believes that advanced directives discussed and drawn up with family members, along with guidance from clinicians, can help ensure that patients’ wishes as to the timing of MAID is clear:
Madeline Li discusses safeguards that are in place around medical assistance in dying. (The MAID town hall was recorded March 5, 2020.) 0:52
Minister Lametti added that in addition to current safeguards already in Bill C-14, other safeguards are also under consideration.
“There will have to be safeguards that we look at when we do deal with dementia and Alzheimer’s more specifically … we’re always trying to find the right balance between safeguards and a person’s ability to choose.”
Ron Posno has dementia and is a strong advocate of allowing advance directives for MAID. At present, the law requires a final consent just before MAID is administered — which is a worry for people with dementia, since they lose the ability to do that as their illness worsens.
Posno asks: “Those of us with dementia have so far been left out of the conversation around MAID. Will people with dementia be included in the new amended MAID legislation?”
Minister Lametti says he believes that MAID and dementia is an issue of such complexity that comprehensive further review is needed before a decision of any kind can be made:
Minister of Justice and Attorney General David Lametti explains why dementia and cognitive decline patients are not yet allowed access to medical assistance in dying. (The MAID town hall was recorded March 5, 2020.) 0:56
Trudo Lemmens adds that advanced directives for MAID by dementia patients is globally a hot-button issue. He points out that it is so complicated that, “there is no country in the world except the Netherlands that allows an advanced request for medical aid in dying in the context of severe dementia.”
Power of attorney
Judy Kirby watched her mother die a slow, painful death. She had power of attorney over her mother’s treatment, and although she could have stopped her being given water and oxygen, she says she did not have the legal ability to ask for MAID for her mother.
Kirby asks: “Will or when will MAID be available to a power of attorney to make those decisions?”
Minister Lametti told Kirby that allowing a power of attorney to make decisions around MAID is an “ethically charged issue,” and that the government is going to look at it at a later stage:
Minister of Justice and Attorney General David Lametti explains why someone with a power of attorney can not make a request for medical assistance in dying. (The MAID town hall was recorded March 5, 2020.) 1:00
Susan Desjardins, from Dying With Dignity, shared with Kirby that she had personally gone through a similar experience. She suggests the patient, “identify not necessarily a power of attorney, but an advocate who could speak for them if they can’t speak for themselves at a time at which they would meet certain conditions they had defined, [and] that at which time they would have wanted to have an assisted death.”
Jason LeBlanc posed a question to the panelists on behalf of his girlfriend, Justine Noel, who was too sick to attend the town hall.
Justine is 29 years old and has fibromyalgia. She has submitted three MAID requests and has been denied twice. She’s awaiting official assessment on her third request. LeBlanc says Noel is worried she will be denied access to MAID once again, due to a lack of medical expertise available to assess her specific condition.
Leblanc asks: “Justine’s question is, what do you intend to do when there is no available MAID assessor with expertise in the applicant’s condition?”
According to Minister Lametti, the expert assessment for MAID no longer requires a specialist, but rather a practitioner with “some level of expertise in the condition.” He adds:
Minister of Justice and Attorney General David Lametti explains who can perform an expert assessment for medical assistance in dying. (The MAID town hall was recorded March 5, 2020.) 0:49
Ernest Frederiksen is a 27-year-old who has lived in constant pain for more than 11 years, due to fibromyalgia and arthritis.
He applied for access to MAID in 2016 and was denied, as his death was not considered “reasonably foreseeable.” He plans to apply again in a few months.
Frederiksen asks: ” Why should I, or those like me whose deaths are not reasonably foreseeable, have to continue enduring physical or psychological suffering that is intolerable and that cannot be relieved, through a 90-day waiting period instead of a waiting period of 30 days?”
Susan Desjardins from Dying with Dignity, also questions the rationale behind a 90-day waiting period before MAID can be given. “Do we really need a 90 day period, or is some of your length of period [not] reasonable to achieve the goals that we’re trying to here in terms of balancing things?”
Minister Lametti pointed out that there were waiting periods under the old act. However, in Bill C-7, waiting periods have been eliminated “because we found that they don’t work.” He adds that the 90 days is a “period of assessment”:
Minister of Justice and Attorney General David Lametti explains why the 90-day period mandated by the government for MAID is one of assessment, and not a period of waiting. (The MAID town hall was recorded March 5, 2020.) 0:55
MAID and the marginalized
Sarah Jama is the founder of the Disability Justice Network of Ontario. She’s worried that once the requirement for “foreseeable death” is removed, MAID will be accessed by a disproportionate number of disabled and racialized people, as a result of a failure of the system to help them live full, sustained lives.
Jama asks: “How are we going to make sure that marginalized communities like the Indigenous, racialized people, and those with disabilities, don’t feel pressured to access MAID because they feel like a burden on the state?”
Trudeau Lemmons shares Jama’s concerns. “People with disabilities are now confronted with the choice when they enter the hospital. You can have MAID in 90 days, or you can go through administrative difficulties of applying for a new system of disability support … that’s actually not available.”
Minister Lametti admitted that the government needs to do more for marginalized people and communities. He stressed that the decision for MAID should never be one of compulsion, but rather always be an informed choice:
Minister of Justice and Attorney General David Lametti on the government’s role in building a system of sustainable care for marginalized communities. (The MAID town hall was recorded March 5, 2020.) 0:47
Bob Davies is a pastor at Kanata Baptist Church. As a person of faith, his biggest concern is the impact of MAID on those caregivers, organizations and people whose moral code does not permit it.
Davies asks: “What is being done to protect organizations, health care workers, caregivers and others from facing the emotional and psychological consequences of participating in or being near a medically assisted death that is against their conscience?”
Minister Lametti assured Davies that no clause in Bill C-14 will compel anyone to participate in MAID if they choose not too:
Minister of Justice and Attorney General David Lametti discusses the support available for those providing medical assistance in dying services. (The MAID town hall was recorded March 5, 2020.) 0:34
MAID and mental health
Glenn Johnson has been living with PTSD and chronic depression for many years. He also suffers chronic pain from degenerative disc disease. He knows that he will want MAID when conditions for him worsen, and he wants MAID extended to those with mental health issues.
Johnson asks: “Pain is pain. Suffering is suffering. And there is no foreseeable end to either my chronic pain or my mental health issues. I want to know why people like myself, with mental illness,are not able to access MAID?”
Trudo Lemmens admits that MAID and mental health illness is one of the most complex issues to tackle. Determining who will and will not get better is close to impossible, he says:
Trudo Lemmens on why the law excludes those with mental illness from access to MAID. (The MAID town hall was recorded March 5, 2020.) 0:56
Minister Lametti added that, “it is an ongoing challenge to better understand the various kinds of mental health issues that might become the basis for a MAID request down the road. We just kept hearing again and again that we weren’t ready to make it part of the MAID package.”
Palliative care vs. MAID
Dr. Naheed Dosani is a Toronto palliative care physician who works at hospitals and within the community to care for people with life-limiting disease at a variety of stages of illness.
In his view, priority needs to be given to better access and options around palliative care, rather than MAID.
Dr. Dosani asks:“How are we working to build up our health care and social care systems, not just in hospitals but in the community too, so that all Canadians from all walks of life have equitable access to quality of life-based palliative care?”
Minister Lametti agreed that access to quality palliative care is crucial. “As a government we have identified palliative care as critically important, and we’re developing an action plan. We’ll obviously work with our provincial partners and territorial partners to try to make sure that it happens.”
Susan Desjardins adds that she believes that both MAID and palliative care focus on the same thing — the quality of dying:
Susan Desjardins shares her personal experience with family members accessing palliative care and MAID. (The MAID town hall was recorded March 5, 2020.) 1:06
Carmen and Lara Messerlian only have one more sleep to go until they can finally squeeze their dad simultaneously in a giant bear hug.
The two sisters travelled from the United States, where they live with their families, to be with their father, John Messerlian, in New Brunswick.
He has stage four cancer of the kidneys and is dying.
The sisters crossed the Canada-U.S. border almost two weeks ago and have been self-isolating in a tent about nine metres behind their parents’ home in Rothesay.
“We’ll be able to go onto the patio and actually give our dad a proper hug,” said Lara, the younger of the sisters.
Messerlian has renal cell carcinoma and was sent to hospital in an ambulance at the beginning of June when his symptoms worsened.
He spent 10 days at the Saint John Regional Hospital. Because of COVID-19 restrictions, he was allowed one brief visit from his wife, Heleni.Eventually, the medical team suggested their dad stay in palliative care, where he could receive better treatment.
Instead, the family decided to bring him home, so he wouldn’t be in isolation.
Driving to the border ‘no matter what’
This isn’t the first time the sisters received a call like this about their father. His health has been deteriorating for five years.
So the sisters, who are only one year apart, did what they normally do — jumped in a vehicle and headed home to New Brunswick.
Only this time, they had to try to cross the international border that has been closed since the end of March because of COVID-19.
“There was no doubt, no matter what was happening, I would drive to the border,” Lara said.
“And if they turn me away, they’ll turn me away. But I would rather just get there and hope that I’ll be able to see my father.”
Sister recovered from COVID-19
Before they left, Lara travelled from Pennsylvania to her home in New York City. She was in quarantine at her in-laws’ home because she had tested positive for COVID-19 in early April, but has now recovered.
From there, she travelled to pick up Carmen in Boston. Then the duo set out for the border crossing at St. Stephen. They arrived at 2 a.m. on June 13, and were the only ones in line.
The sistershad to give an oath they would follow public health guidelines. If not, they were told, they could be fined up to $ 1 million and possibly face jail time.
The process took a total of 12 minutes.
“It was kind of scary for that moment,” Lara said. “We kind of had a moment of, are we doing the right thing? We don’t want to put anyone at risk and we don’t want to bring anything into the country.
“We certainly don’t want to be patient zero in New Brunswick.”
As a professor of epidemiology at Harvard University, Carmen said she’s a strong believer of mitigation measures to prevent the spread of COVID-19.
“My sister and I took this very seriously.”
Lara, who works in public relations in New York City, said the border scene was intimidating, but she respected the patrol officers because they “had a serious job to do.”
“But we also had a serious situation and a family emergency we needed to tend to,” she said.
Once they arrived in New Brunswick, the sisters began their search for a place to stay in isolation.
Without any luck, they had to choose between spending a night camping for the first time in their lives or sleeping in Carmen’s van.
They chose camping.
“It was easy to choose this as opposed to an Airbnb,” Carmen said. “We could be close to my dad, which was a big factor.”
Camping for the first time
But they had to get some camping supplies. Just before Canadian Tire closed, the sisters were on the phone with a staff member in Rothesay. He was picking out all the supplies they would need. Then the items were picked up by a family friend.
“We [had] never pitched a tent, but we were going to do this even if it’s dark,” said Lara. “There was no light at the time, and there were mosquitos everywhere.”
He’s the perfect package of a person and he’s been unmatched in my life.– Carmen Messerlian
For the next two weeks, the sisters had two large tents, one for sleeping and one for work and leisure. They had lanterns, a makeshift sink, toilet and shower, which offered only cold water in the mornings from a hose. They also had an inflatable bed, which they said allowed them to have the best sleep of their lives.
“Everything, you would need for backyard living,” said Lara.
Throughout their camping experience, they were also checked on by police to make sure they were following the rules.
During their stay, the sisters said they were able to enjoy New Brunswick’s fresh air, eat chips and hang out as they did as teenagers.
“We could be like sisters again, sharing a room,” Carmen said. “It’s a tent, but it’s a room to us.”
But most important, they were able to be near their dad.
The sisters have spent the last two weeks talking with their father about everything, including the weather and childhood stories, and singing old songs he taught them when they were kids.
In his checkered pyjama pants and black T-shirt, he often sits or stands, gripping the deck railing, as Lara and Carmen chat on the lawn.
They’re looking forward to snuggling under the covers with their dad and listening to his heartbeat, which they have been doing during their visits since he was first diagnosed with cancer five years ago.
And although he might be a little slower and 25 pounds slimmer since the last time they saw him, he’s still their dad.
Their father grew up in Lebanonand moved from Europe to Canada in 1969, where he continued to chase his dreams as a musician. He is known by many as the Golden Sax of Spain.
The sisters described him as a feminist, human rights activist and a good cook, who made everything from scratch.
They said he’s also a fighter. And has escaped death more than once.
Carmen and Lara Messerlian returned home from the U.S. and are counting the hours until they can hug their father. Carmen is an epidemiologist at Harvard University. Lara works in public relations in New York City and had COVID-19 this spring. 16:43
Although they’re grateful for the time they’ve had together with him over the past two weeks, time might be running out.
A few years ago, Carmen said, she and her father made a pact that he would live at least until he turned 90.
He turns 87 at the end of August.
“He said to me, ‘I don’t want to break our pact. We made this goal together,’ ” Carmen said, trying to hold back tears.
“I said even if you’re not here at 90, we’re still here. We’re together. Nothing separates us.”
Not even a major border closure in the middle of a pandemic.
And no matter what happens, the two women promised they would throw a 90th birthday bash for their father in three years.
“He’s the perfect package of a person, and he’s been unmatched in my life,” Carmen said.
This column is an opinion by John Scully, a former CBC, CTV and BBC journalist. He suffers from depression, general anxiety disorder and PTSD (from covering 36 wars), and has attempted suicide twice. He wants to see the option of medical assistance in dying (MAID) offered to those with mental illness. For more information about CBC’s Opinion section, please see the FAQ.
It’s a clear case of basic human rights: the mentally ill must be treated as equals to the physically ill.
On Monday, the federal government tabled a proposed amendment to Canada’s medical assistance in dying (MAID) legislation. According to the Department of Justice, “This Bill would retain all existing eligibility criteria, but would remove the requirement for ‘reasonable foreseeability of natural death.’ It would also expressly exclude persons suffering solely from mental illness.”
A statement from the department adds, “eligibility for persons suffering solely from mental illness … could be considered during a broader parliamentary review of MAID legislation expected to begin by June 2020.”
This proposed legislation ignores the fact that some with mental illness suffer terrible pain, even though it’s a different pain, and modern psychiatric medicine has few or no answers. It doesn’t have a pill that’ll stop you from wanting to kill yourself. It struggles to stop the incessant, unrelenting brain pain of severe depression, bipolar disorder, schizophrenia and other life-threatening mental illnesses.
For many of us, pills are a miserable flop, as are shock therapy and its memory annihilation, other electronic interventions, even holistic treatments like acupuncture or Omega 3 supplements. Talk therapy sometimes offers relief. But a cure? Nowhere on the horizon.
So what’s left? For some of us, death. And yet, even in death, those with mental illness in Canada are denied a voice.
A 43-member panel assembled by the Council of Canadian Academies advised the federal government with recommendations on three levels of Medical Assistance in Death, one of which includes the still-illegal MAID for the mentally ill. In an earnest and responsible foreword to the three reports, the Council extolled the breadth of the expertise of the panel members: “The CCA was mindful of the need to gather abundant expertise for this project: we invited specialists with clinical, legal, and regulatory expertise to the table; we sought authoritative scholars and practitioners from the fields of law, medicine, nursing, mental health, bioethics, anthropology, and sociology; and we included input from Indigenous elders.”
Great, inclusive list, eh? But would I cast my fate to this group’s whims? No way. The elitism implicitly demonstrated by the Council is, if I may use what I think is an apposite cliché, another nail in the coffin of progress for the mentally ill.
Take a look at that list again. Notice who’s NOT on this life-or-death panel. Not one person with a mental illness. Not one caregiver. Not one loved-one who has seen the torture endured by their kin.
The federal government has unveiled its plans to expand access to medically assisted dying after public consultations. 2:01
The hubris of many mental health professionals is profound. Frightening. They demonstrate a distressing ignorance not just of those of us who suffer from mental illness, but of mental illness itself.
Many on the panel averred that loss of hope is merely temporary and can be restored over time, which defies reality. Loss of hope when you’re suffering cruelly and there is no cure is a terminal knell. That’s what depression does. That’s why people kill themselves.
I’ve known at least five souls who lost hope. And with hope so went their dignity and their reason to live. Daryl couldn’t get a job, the rejection gutted him. He was bipolar and very sick. No-one could ease his pain. No-one, no treatment, could give him any hope. Daryl took his own life.
If you’re thinking about suicide or are concerned about someone, there are people you can talk to:
Utter loss of hope, dignity, and self-esteem are not clinical aberrations. They cannot, must not, be cavalierly dismissed as “easily treated conditions.”
They’re brutal realities of the viciousness of depression. And they defy the pious assertions of academics and panels and medical journals.
It’s not for their own amusement that psychiatrists sugar-coat incurable refractory depression as “treatment-resistant depression.” No. They do it because it means they’re at the end of the road for their pills, potions, chatter, and zapping. There’s nothing left.
Of course, most refuse to admit this unpalatable and potentially deadly fact, because it exposes their helplessness.
This point is appended by an expert at the National Institutes of Health. In a 2017 panel discussion co-hosted by CAMH, he said that for those with mental illness, with proper treatment, the desire to end one’s life may abate.
May? How very scientific.
Those who oppose MAID for those with mental illness on these grounds are saying that when there’s no hope of relieving the suffering, we’ll pretend just the opposite — duplicity and pretence instead of the incontrovertible truth. This patient has the need and should have the right to die, but we medical gods aren’t gonna do it. Our oath says “Do no harm,” so we can’t unless it’s a terminally ill cancer patient — then it’s okay, that shows compassion.
The mentally ill? We’d like to, but it’s not the same.
So no compassion, no relief — unless the sufferer is then forced to die by suicide. This is one of the most undignified ways of dying, with botched attempts, finality by often brutal methods like guns and ties and trains, followed by shock and intolerable pain for unprepared loved ones.
That’s the reality of denying MAID for the mentally ill.
The Liberal government tabled legislation Monday to amend the rules on medical assistance in dying (MAID), repealing the requirement that a person’s natural death be “reasonably foreseeable” and disqualifying those whose sole underlying condition is a mental illness.
The proposed changes also would permit access to MAID to someone whose death is reasonably foreseeable — but who has lost the capacity to consent since deciding to do so through an agreement with a medical or nurse practitioner.
The bill removes the requirement for a 10-day “reflection period” and waives the requirement that a patient provide final consent.
During a news conference in Ottawa, Justice Minister David Lametti said the change to the rules on consent will prevent cases of patients opting to end their lives sooner than they might otherwise because they fear losing their ability to give consent.
“No one should be faced with such an impossible choice,” he said.
The Liberal government tabled legislation Monday to amend the rules on medical assistance in dying (MAID). Justice Minister David Lametti spoke during a press conference Monday. 1:40
Lametti cited the case of Audrey Parker, a Nova Scotia woman who chose a medically assisted death earlier than she wanted because she feared that doctors would deny her the procedure if she lost her mental capacity to consent before the time arrived.
The 57-year-old had stage 4 breast cancer that had spread through her bones and to her brain.
Lametti said that while the legislation widens eligibility, those obtaining MAID must still experience intolerable suffering and be in an advanced state of decline due to an incurable condition.
“We’re talking about people … who are suffering, families going through some of the most difficult times of their lives,” he said.
“So when it comes to these deeply personal and complex issues, we must act responsibly and, most importantly, with compassion.”
In September 2019, a Quebec judge declared parts of the federal and provincial laws on assisted dying unconstitutional, and gave the federal government six months to pass new legislation.
Quebec Superior Court Justice Christine Baudouin said one portion of the federal law — requiring that a patient must face a “reasonably foreseeable” death before seeking medical assistance in dying — violated Canadians’ charter rights.
During the news conference Monday, Lametti said the new legislation responds directly to that ruling, and also reflects consultations with academics, medical professionals and the public.
Since MAID became legal in Canada in June 2016, there have been more than 13,000 medically assisted deaths, according to background material provided by Justice Canada. Cancer is the most frequently cited underlying medical condition, followed by neurological conditions and cardiovascular or respiratory conditions, according to the government document.
The bill arrived after the government launched an online survey on MAID and held roundtables in cities across the country. The survey drew about 300,000 responses.
‘Unreasonable and unjust’
Health Minister Patty Hajdu said ministers heard during those consultations from medical professionals and members of the public who argued that the requirement to give final consent was problematic because patients worried they could lose the capacity to give that consent.
Some, like Audrey Parker, chose to die early, and others — fearing they could lose capacity — refused to take pain medication.
“This is unreasonable and unjust,” Hajdu said.
Canada’s existing MAID law requires a parliamentary review and a study of the state of the palliative care in Canada by June 2020.
That review will also consider whether the law should allow advance requests, access for the so-called “mature minors” doctors consider capable of making their own decisions on medical care, and whether psychiatric conditions should be grounds for assisted death.
The government commissioned three independent reports on those issues, which were submitted to the government more than a year ago by the Council of Canadian Academies, a group that pulls together experts to consider public policy.
Employment, Workforce Development and Disability Inclusion Minister Carla Qualtrough said the government heard concerns that disabled people could be threatened by expanded access to MAID. She said the updated legislation includes safeguards so that people know their options include disability supports, counselling and palliative care.
“That’s what disability rights advocates were calling for, to make sure decisions were informed,” she said. “I think that has been achieved in this law.”
The Canadian Medical Association (CMA) issued a statement calling the proposed changes a “prudent step forward.”
The CMA said it had pushed for a balanced approach, which included ensuring appropriate safeguards and allowing physicians to act according to their “moral commitments.”
“We welcome the government’s staged approach in order to carefully examine more complex issues,” said CMA president Sandy Buchman.
“We look forward to working closely with Parliament during the upcoming legislative proceedings and the legislative review which is expected later this year.”
This column is an opinion by Dr. Andrea Frolic, Dr. William Harper and Dr. Marianne Dees. Dr. Frolic is director of the Office of Ethics and the Medical Assistance in Dying Program at Hamilton Health Sciences. Dr. Harper is an endocrinologist at Hamilton Health Sciences, and an associate professor of medicine at McMaster University. Dr. Dees is a family physician and euthanasia provider, educator and researcher in the Netherlands, and a faculty member at the Radboud University in Nijmegen.For more information about CBC’s Opinion section, please see the FAQ.
However, opening access to MAID for a wider range of patients could have the unintended consequence of diminishing the number of health care professionals who are willing to provide the service, thus worsening access overall.
Removing the foreseeable natural death criterion would represent a radical change for MAID providers.
More than 8,000 people across Canada have received medical assistance in dying since 2016, and most had end-stage cancer, or neurological or cardio-vascular illnesses. According to a recent study of MAID in Ontario, 90 per cent were expected to die a natural death within six months.
This means medical assistance in dying did not alter the course of their lives; it shortened their inevitable dying process. Many providers find solace and meaning in helping to end the unbearable suffering of patients nearing the end of their natural lives.
However, when the federal government changes the law, it may allow patients with other diagnoses to request MAID, including those suffering with illnesses that don’t necessarily have a clear trajectory towards death, such as chronic pain or psychiatric conditions.
Such illnesses are often cyclical — sometimes their physical and psychological effects become terrible, sometimes better. And likewise, with time and new therapies, some may see their situation improve.
Offering MAID to people in these circumstances could shorten their lives by decades and eliminate any possibility of a better future — or release them from years of agony. Determining whether such patients are eligible and working with them to decide whether MAID is the best option will impose a heavy moral, psychological and emotional burden on MAID providers.
Access to medical assistance in dying cannot be facilitated by legislation alone, it requires willing and capable providers, and many regions across Canada already face shortages. Access to MAID is already challenging for patients with diagnoses other than cancer. According to reports on MAID statistics provided by the Office of the Chief Coroner of Ontario, MAID deaths increased 71 per cent in the past year, but the pool of providers only increased by 25 per cent.
Some providers are already stepping away from this work after a few years due to exhaustion and burnout, compounded by the unrelenting demand for the other health care services they provide. Faced with the stress of navigating more complex cases, it is likely that more may stop offering MAID services altogether.
We can learn a lot from the experience of The Netherlands, as we’ve tried to do at Hamilton Health Sciences in designing a sustainable, high-quality MAID program that accounts for both the needs of patients and providers.
Dutch providers receive standardized education in MAID in medical school, ongoing mentoring, peer support and retrospective case review. These supports mitigate the risks of harm to both patients and providers, and enable continuous learning and patient-centred care.
The Dutch legal system allows for MAID without a foreseeable death. But according to a recent national report, over 90 per cent of Dutch people with psychiatric disorders who request MAID outside the context of a terminal illness change their minds and decide they want to live.
In The Netherlands, these patients are closely followed by their family physicians and have access to psychiatric and palliative care. Physicians often take months to explore the patient’s motivation for MAID to determine whether there are other ways to alleviate their suffering.
In Canada, the situation is different.
Rarely is MAID provided by the patient’s regular treating physician; usually the provider is a stranger. Most providers have other full-time jobs. Many work in isolation, without meaningful mentorship or peer support, according to the Listserv shared by MAID providers across Canada. And providers face potentially harsh sanctions, such as jail time, for errors in the administrative and assessment processes.
Whatever changes in the Canadian law are implemented, it is time to stop treating patients’ “right” to MAID as a legal abstraction.
This right relies on the goodwill, courage and skill of physicians and nurse practitioners who voluntarily take on the legal, moral and psychological risks and burdens of this practice to alleviate unbearable suffering and support patient choice. The only way to enhance access to MAID as the law evolves is by enhancing supports for these providers.
Adapting the Dutch experience to the Canadian context, such supports for MAID providers should include:
Best practice guidelines
Ongoing mentorship and peer support
Scientific evaluation of cases
Care-coordination services to reduce the administrative burden for providers and support timely access for patients
Enhanced access to medical specialists, especially psychiatry and palliative care, willing to consult and explore options with patients requesting medical assistance in dying
While rewriting the law, government and professional regulatory bodies must also recognize that developing safe and sustainable working conditions for MAID providers is the key to enhancing access for patients.
Government air strikes have hit hospitals and refugee camps in northwest Syria and killed about 300 civilians as President Bashar al-Assad’s forces press an assault against the last rebel stronghold, the United Nations said on Tuesday.
UN officials said relief agencies were overwhelmed by the humanitarian crisis as nearly one million civilians, most of them women and children, had fled toward the Turkish border in bitter winter conditions to escape the onslaught.
“Civilians fleeing the fighting are being squeezed into areas without safe shelter that are shrinking in size by the hour. And still they are bombed. They simply have nowhere to go,” UN human rights chief Michelle Bachelet said.
Syrian and Russian warplanes meanwhile kept up raids on the town of Darat Izza in Aleppo province on Tuesday, witnesses said, a day after two hospitals there were badly damaged.
At Al Kinana Hospital, blown-out walls and dust-covered medical cables and supplies were strewn about the hospital after two staff were wounded on Monday, witnesses said.
Ankara said talks with Moscow on Idlib were “not satisfactory” and Turkey would deploy more troops to the region.
Turkish and Russian officials held a second day of talks in Moscow with no apparent agreement on Idlib, where the latest push by Russian-backed Syrian government forces has killed several Turkish troops.
Russia said both sides restated their commitment to existing agreements aimed at reducing tension in Idlib. A statement did not mention Turkey’s demand for Syrian government forces to pull back.
Turkey says it cannot cope with a new refugee influx in addition to the 3.6 million Syrian refugees already stranded inside its borders.
Appearing on national television on Monday, Assad said the rapid military gains presaged the eventual defeat of the nine-year-old insurgency against him although it could still take time. The rebel factions include Turkish-backed rebels and jihadist militants.
Possible war crimes being committed
UN human rights spokesperson Rupert Colville, asked if Syria and Russia were deliberately targeting civilians and protected buildings, said: “The sheer quantity of attacks on hospitals, medical facilities and schools would suggest they cannot all be accidental.”
The attacks could constitute war crimes, Colville told a briefing in Geneva.
The UN human rights office said it had recorded 299 civilian deaths since Jan. 1, about 93 per cent caused by the Syrian government and its allies.
The swift advance of government troops, backed by Russian air strikes, through northwest Syria has caused the biggest displacement of the war as people flee toward a shrinking pocket near the Turkish frontier where insurgents hold their last strongholds.
7 children dead
A UN spokesperson, David Swanson, said close to 900,000 people have fled conflict zones in Idlib province and western Aleppo since December, more than 80 per cent of them women and children.
Many have been unable to find shelter and are sleeping outside in freezing temperatures, burning plastic to stay warm and at risk of disease and death.
“Only half of all the health facilities in the northwest are still functioning now,” Swanson said.
Hurras Network, a Save the Children partner in Idlib, said seven children, including a seven-month-old baby, had died from freezing temperatures and bleak conditions in displaced persons camps.
About 525,000 children are among those trapped, the UN Children’s Fund (UNICEF) said.
Syrian army claims full control in Aleppo countryside
The Syrian army said on Monday it had taken full control of dozens of towns in the Aleppo countryside.
The M5 highway linking Damascus to Aleppo, the focus of recent fighting, was re-opened to civilian traffic on Tuesday after government forces recaptured it last week, the Syrian Observatory war monitoring group reported.
The opposition said air strikes in southern areas of Idlib province had left dozens of towns and villages in ruins in what it called a “scorched earth policy.”
The Russian and Turkish delegations meeting in Moscow were trying to reconcile their differences over Idlib, which have raised questions over the durability of their co-operation.
Turkey has sent thousands of troops and convoys of military equipment to reinforce its observation posts in Idlib, established under a 2018 de-escalation agreement with Russia.
Moscow has accused Turkey of flouting their agreements and failing to rein in militants it said were attacking Syrian and Russian forces.
In one positive note, Turkish and Russian troops have restarted joint patrols near the border that had been halted since October, a Russian defence ministry official said.
Tedros Adhanom Ghebreyesus, director-general of the World Health Organization, said WHO was sending essential medicines and supplies across the border, including trauma kits for Idlib.
The federal government is asking for an extension on a looming court deadline requiring it to update the country’s medical assistance in dying law.
Attorney General David Lametti filed a motion asking for a four-month extension of the Superior Court of Quebec’s September 2019 Truchon ruling, which said the current law is too restrictive.
The ruling gave the federal government six months to pass new legislation.
Lametti said the government intends to introduce new legislation, but that the additional time would allow parliamentarians to review and amend proposed changes.
“We recognize that medical assistance in dying is a complex and deeply personal issue,” said Lametti in a joint statement with Health Minister Patty Hajdu. “We remain committed to responding to the Court’s ruling as quickly as possible.”
Online consultation sees 300,000 submissions
The law passed by the Liberal government in 2016 required that a person’s death must be “reasonably foreseeable” in order for them to be eligible for a medically assisted death.
In the Truchon case, Justice Christine Baudouin ruled it was unconstitutional to restrict assisted death to those nearing the end of their life.
The ruling, which only applied in Quebec, meant the “reasonably foreseeable” provision in the law would be suspended in the province if no new legislation is passed by March 11.
Lametti said previously that the government is using the opportunity to update the legislation across the country.
It launched a two-week consultation period last month that saw over 300,000 submissions.
Canadians were asked for their input on questions such as whether to change the standard 10-day “reflection period” patients are supposed to wait, whether to make psychiatric evaluations mandatory for all patients and whether the doctor or nurse practitioner should be obligated to consult the patient’s family or loved ones.
The federal government has been flooded with messages from Canadians who want to weigh in on medical aid in dying. As of Wednesday evening, 229,281 Canadians had responded to the government’s survey, which has been online for just a week and a half.
It’s an enormous figure — the largest number of responses the Department of Justice has ever seen for any public consultation. Even hot topics like cannabis and prostitution only netted about 30,000 responses each.
CBC News asked Justice Canada whether it was aware of any organized campaign that might be pushing the numbers up.
“We will continue to monitor for any potential evidence of abuse, but to date no major issues have been identified,” said a ministry spokesperson.
One factor that could be driving the numbers is experience: more Canadians may now know someone who obtained a legal doctor-assisted death, said Susan Desjardins of the advocacy group Dying with Dignity.
“I believe that people want to have this choice,” she said.
In her own volunteer work with the group, Desjardins said, she’s seen an increase in the number of requests for information about assisted dying. Her group is encouraging its members to participate in the online consultations.
“I would say there aren’t very many people who want to die, but they want to die well and they want to die as much as possible on their terms,” said Desjardins.
The federal government said more than 6,700 Canadians have obtained medically-assisted deaths — but that figure only covers the period up to November 2018. CBC News has requested newer numbers.
Leaders in the Catholic Church also have been urging their members to weigh in.
The Canadian Conference of Catholic Bishops provides a link to the survey on its website.
“We weren’t necessarily directing them or telling them how to fill it out,” said Calgary Bishop William McGrattan. “But [we’re] giving them the proper understanding and context and knowledge so they might express their views with their faith in mind.”
Bishop McGrattan said he worries that any expansion of access to medical aid in dying would affect the vulnerable, such as those with dementia or mental illnesses.
He said he’s also concerned about the tight timeline for public consultations. The survey will close on Jan. 27 at 11:59 PM PST.
“A two-week consultation I don’t think gives it the importance that it should,” he said, adding that a deeper discussion is needed before the law can be changed.
The federal government is doing more than just the online survey. Cabinet ministers have been holding closed-door roundtable meetings across the country on the topic as well.
Officials are working quickly to meet a court-imposed timeline. A Quebec judge struck down a portion of the federal law in the fall. The portion of the law requiring that a patient’s death be “reasonably foreseeable” to qualify for medical assistance will be suspended as of March 11.
Justice Minister David Lametti has said he hopes to put forward new legislation next month.
Poll finds increased support
In 2016, a poll by the Angus Reid Institute found that 73 per cent of respondents believed it should be easier for Canadians to make their own end-of-life decisions. New data seen by CBC News that will be released by Angus Reid later this week shows that number has risen.
It shows a “hardening” of opinion on the issue, said the polling firm’s executive director Shachi Kurl.
“When you see consensus that is that strong on an issue, you know people are passionately engaged on it. They’re paying attention. And in many cases, it’s going to be something that has touched their [lives],” said Kurl.
An ‘evolution’ in thinking?
Lametti has said Canadians’ views on medically assisted death have evolved since the legislation was passed in 2016.
Not everyone agrees. Grace Pastine of the B.C. Civil Liberties Association, which advocates for fewer restrictions on medically assisted death, said that Canadian politicians are simply waking up to what the public already believed.
“The federal government has, in some ways, caught up to where the Canadian public is, and really where the courts have been for years now,” said Pastine.
She describes the current laws as providing “layers and layers of safeguards” on the procedure. People with diseases such as Parkinson’s, multiple sclerosis and Huntington’s have a right to a doctor’s help to die, she argued, and the new legislation should reflect that.
Larry Worthen, executive director of the Christian Medical and Dental Association of Canada, staunchly opposes the 2016 legislation. He said he fears some will choose a medically assisted death because they worry about being a burden to their loved ones, or because they feel lonely or isolated.
“We have to as Canadians come to grips with the fact that once we’ve opened Pandora’s box in this way, there are going to be some unintentional repercussions,” he said.