In Case You Missed It: January 2019

In Case You Missed It is a round-up of news articles and commentaries featuring Dying With Dignity Canada speakers and stories. Did you miss these stories in January?

Following the December release of the Council of Canadian Academies’ (CCA) long-awaited reports on medical assistance in dying (MAID), there have been significant discussions about the future of assisted dying in Canada.

DWDC CEO Shanaaz Gokool spoke to CBC News about the next frontier in the ‘right to die’: advance requests for assisted dying, mature minors, and individuals whose sole underlying medical condition is a mental illness.

Shanaaz also spoke to NewsTalk 610 CKTB host Matt Holmes about what the federal government can do now to restore the rights of suffering Canadians trying to access assisted dying.

In this CBC Quebec AM interview, Shanaaz spoke with guest host Allison Van Rassel about granting people with Alzheimer’s and dementia the right to make an advance request for assisted dying.

A tragic case out of Saguenay, Quebec demonstrates why both Quebec’s and Canada’s assisted dying laws need to be amended to respect the end-of-life rights of people with capacity-eroding conditions like dementia and Alzheimer’s.

A Saguenay man told police that his wife of 65 years, who has dementia, asked him in a moment of lucidity to help her die. Both are expected to recover from their apparent suicide pact, but the husband could now face charges.

DWDC CEO Shanaaz Gokool spoke with CBC News about the heartbreaking case and why we need legislation that includes the right to make a request for assisted dying in advance:

“People like the Saguenay woman are ‘completely shut outside of the legislation,’ Gokool said.

‘This is a phenomenon and a troubling issue all across the country, because essentially we're telling people that because of their diagnosis, they're not able to access the same rights as someone who has capacity [to give consent],’ Gokool said.

St. Martha’s Hospital in Antigonish, Nova Scotia is standing firm in its policy against assisted dying. Retired senator Jim Cowan, the chair of DWDC’s board, talked to Global News about potential next steps:

“A court challenge is certainly one of the options that is being looked at.”

Sheilia Sperry, the head of Dying With Dignity Canada’s Nova Scotia chapter, spoke with Halifax Today about St. Martha’s ban on MAID.

“Our contention is that if you receive public funds then you should provide public services.”

It’s been more than 958 days since Canada passed its assisted dying law. But Nova Scotia still lacks a program for medical assistance in dying, as well as MAID policy and regulation. The Coast covered the province’s lack of government regulation, with comments from Dalhousie professor Jocelyn Downie.

“We’ve got a problem here,” she says. “We don’t have the policy, we don’t have the program, we’ve got mistakes and we have the really pressing issue of St. Martha’s, and that’s weighing on the policy—and that matters.”

The Quebec challenge to Canada’s and Quebec’s assisted dying laws began in court on January 7. The case was launched by Jean Truchon and Nicole Gladu, two Montrealers with degenerative medical conditions who are challenging restrictions in both laws. Their requests for medical assistance in dying have been denied because they are not at the end of their lives. This, they argue, is an infringement upon their Charter rights.

Dying With Dignity Canada is participating as an intervenor in the case alongside our sister organization AQDMD.

Early court coverage can be found here:

In this CityNews clip, plaintiff Nicole Gladu shared why she is taking her case to the Quebec Superior Court.

“I make a very great distinction between living and existing, and because I’ve had a very rich life, I cannot satisfy myself with only existing.”

The Canadian Press’ Stephanie Marin covered Jean Truchon’s testimony on the second day of court hearings.

You don’t have to be at the end of life to feel intolerable pain,” he told the court. staff covered the first few days of court proceedings. This piece includes comments from law professor Jocelyn Downie, who called our existing assisted dying laws “paternalistic and patronizing.” (You’ll also find video coverage of the court hearings and Downie’s interview with CTV’s Your Morning at the link.)

“It has to be about your capacity for self-determination. So if you’re capable of making the decision and you're experiencing and enduring intolerable suffering you should be allowed access [to] assisted dying.”

French coverage and commentary can be found here:

Parti Québécois member Véronique Hivon, who helped usher in Quebec’s law on assisted dying, has called for action to ensure that Quebecers have fair access to palliative care and assisted dying.

While Quebec’s health minister was not available for comment, his press secretary told Le Devoir that the ministry is currently waiting for the submission of two reports. One report examining the grounds for the refusal of MAID requests is expected in January. The other report, written by experts on the possibility of allowing patients with dementia to make an advance request for assisted dying, is expected in the spring.

Editor’s note: You can use an online tool like this one to translate the above pieces to the language of your choice.

Quebec Premier François Legault responded by saying his government will look into the possibility of allowing individuals not facing imminent death to access assisted dying.

Legault said he made a campaign promise to look into the issue, but cautioned that it will take time. You can read more about his response in this CBC News article.

Six Quebec professional orders are calling on the province to challenge the constitutionality of the federal assisted dying law. The orders represent physicians, nurses, lawyers, pharmacists, notaries, and social workers.

Read more in this piece by The Canadian Press.

The appointment of David Lametti as Canada’s new justice minister raises hope for a less restrictive assisted dying law. Lametti, who is taking over justice from Jody Wilson-Raybould, was one of just four Liberal MPs who voted against Bill C-14. He expressed concerns that the law was too restrictive.

DWDC CEO Shanaaz Gokool spoke with The Canadian Press’ Joan Bryden about Lametti’s appointment.

"Our hope is for the country that the new justice minister will follow through on what he's already said and what he already knows: that (the law) doesn't do enough for the most vulnerable people."

Not long after his appointment, Justice Minister David Lametti said that he was “interested” in hearing Dying With Dignity Canada’s and others’ proposals on how to protect the rights and choices of people who’ve been assessed and approved for medical assistance in dying.

Lametti told The Canadian Press’ Joan Bryden that he’s open to hearing DWDC’s suggestions so other Canadians won’t suffer the same fate as Halifax’s Audrey Parker, who chose to die with MAID weeks earlier than she would have liked because of the law’s late-stage consent requirement.

“I’m interested,” Lametti said in a brief interview outside his first cabinet meeting, when asked about Dying With dignity Canada’s idea [for Audrey’s Amendment]. “I’m interested in watching what happens and what is proposed but I won’t commit the government to doing anything more than that.”

In response to Lametti’s appointment, New Democrat candidate Sven Robinson called for changes to the federal assisted dying law. You can read more in this iPolitics article.

On January 21 and 22, Dying With Dignity Canada went back to court to help defend an Ontario regulation that protects a person’s right to access medical assistance in dying.

The College of Physicians and Surgeons of Ontario’s (CPSO) policy on effective referral had already survived a court challenge launched by the Christian Medical and Dental Society of Canada (CMDS). But the CMDS decided to take their case to the next level. The Court of the Appeal for Ontario, the highest court in the province, agreed to hear the challenge.

DWDC acted as an intervenor in the case at the divisional court level, and our lawyers presented arguments yet again at the appeal level. Both times, we made the case that the CPSO’s policy is essential to preserving fair access to assisted dying for the most frail and vulnerable people in the health care system.

Read our official press release here.

You can read The Canadian Press’ coverage here.

The outcome of this appeal is expected in the first half of 2019. The decision could set an influential precedent all across Canada.

Alberta Health Services will begin surveying families to find ways to ease what can be a difficult process for some. Listening to the voices of patients and their loved ones is vital to providing patient-centred care. We applaud AHS for taking this important step.

Read more about this in the Calgary Herald.

Sandra Demontigny is 39 years old and she has Alzheimer’s disease. She wants medical help to die — but not right now.

In this La Presse article, Sandra explained how the ban on advance requests for assisted dying threatens her right to choice. She hopes, she said, that her Alzheimer’s disease will evolve less quickly than the federal and Quebec’s assisted dying laws. (Article is in French.)

Dr. Matt Kutcher was profiled as a “Physician Changemaker” by the Canadian Medical Association for his work as a MAID provider on Prince Edward Island. In 2017, Dr. Kutcher became the first doctor on PEI to provide MAID when he assisted Paul Couvrette, the husband of Liana Brittain.

Dr. Kutcher spoke about why he provides MAID — and why he’s no longer avoiding the media spotlight.

“Our job is not always to heal, it’s not always to cure disease and to fix illness. It’s often to be supportive and to provide comfort and to relieve suffering, and MAID allows you to do that.”

Dr. Tobias Gelber, a doctor in southern Alberta, spoke to Alberta Health Services about his role in providing medical assistance in dying.

“I’m very certain that MAID helps both families and the patients themselves on the journey and spares them the indignity of a tortuous death. […] I feel it’s an honour to be part of this, and I want to make sure that people are aware it’s available.”

Dr. Susan MacDonald, a palliative care doctor in St. John’s, offered a profound and honest reflection on the issue of whether physicians can — and should — raise the issue of MAID with their patients. After a patient, “Leo,” died by suicide, Dr. MacDonald was left wondering “what if?” and whether she should have told him about MAID.

She spoke with CBC News:

“It was a very distressing clinical case for me because I felt, at the end of the day, I hadn’t done the best I could for this particular patient. It was a reflective exercise for me to look back and say, ‘What could I have done better? Where are the problems? And what do we need to do about it?”

In an interview with CMAJ Podcasts, Dr. MacDonald candidly spoke about the blame she places on herself after Leo’s suicide.

Victoria’s Will Pegg was diagnosed with metastatic bone cancer in 2017. Faced with a terminal diagnosis and unbearable pain, Will chose to have a medically assisted death.

In this powerful WebMD documentary — “Dying on Your Own Terms” — Will and his physician, our friend and CAMAP President Dr. Stefanie Green, shared their perspectives on life and death in the days leading up to his medically assisted death.

Legal columnist Celia Chandler wrote a three-part series on medical assistance in dying in Canada for In part one, Chandler takes a look at the legal history of assisted dying in the country, and in the final two parts, she shares her own personal experience with MAID, in the wake of her partner’s terminal cancer diagnosis.

Here is the entire series:

This Le Reflet du Lac piece tells the stories of two Quebecers who chose medical assistance in dying. (Article is in French.)

In international news: Dutch patients with dementia are asking for medical assistance in dying earlier than they would like, before losing capacity.

This BBC News piece takes a look at the complexities of allowing individuals with capacity-eroding conditions to die with medical assistance.

Halifax’s Audrey Parker continues to inspire and empower Canadians across the country. Jessica Leeder, The Globe and Mail’s Atlantic Bureau Chief, wrote about the important lessons she learned from her interview with Audrey in her final days of life.

“I have been replaying our interview in my mind for months now, not because of how much it drained me but because of how much it filled me up.”

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