In Case You Missed It: July 2017

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

St. Joseph’s Hospital in London, Ont., is not allowing MAID on-site. Dying With Dignity Canada CEO Shanaaz Gokool shared DWDC’s views on public institutions:

"We're against facilities that are publicly funded opting out of what is basic health care," Gokool told CBC London. "Transferring people in and out of those facilities can result in physical harm at the most vulnerable time in their lives."

With the passing of Bill 84 in Ontario, hospitals, long-term care homes and hospices are exempt from freedom of information laws and no longer have to disclose whether they provide medical assistance in dying (MAID).

Ontario’s privacy commissioner, however, is calling for more transparency to help ensure that patients can make informed decisions. Physician Advisory Council member, Dr. Gerald Ashe, comments:

“I’ll be honest with you, I don’t agree that publicly funded institutions should have the right not to offer it. But this is so much beyond that,” he said. Though he understands that individual physicians may find comfort in anonymity, he says he’s faced zero criticism for his involvement. “I don’t think there’s any danger to physicians,” he said. “Individuals who are participating and not putting their name out there are just kind of finding their way.” To him, an institution doesn’t need the same level of protection.

Physicians are not receiving adequate compensation for their MAID cases. Some physicians wonder if the decision to set fees so low was politically motivated. In response, CEO Shanaaz Gokool told Maclean's magazine the following:

“I would hate to think that was the intention,” adds Shanaaz Gokool, CEO of Dying with Dignity, an end-of-life rights organization. “But ultimately it doesn’t matter,” she adds. “Intentionally or not, the outcome is the same: you’re putting up barriers to access, and now that [policy-makers] know, it’s their responsibility to make changes ASAP. If they don’t, then they are intentionally obstructing access with that decisions.”

A number of physicians are speaking out about the billing codes for MAID and how many providers are not being paid adequately for the time and nature of their work. CAMAP President Dr. Stefanie Green comments:

“It’s been a year that my members have been doing this work. It has been done in good faith with the [understanding] that health authorities and provinces will be doing their job and setting adequate fees for this work to go on. That hasn’t happened in some locations.”

London physician Scott Anderson spoke with CBC about barriers to MAID access and why he is a provider:

"I know no one whose witnessed one of these deaths who has thought of it as anything other than a dignified death," he said.

Dr. Jesse Pewarchuk has been very outspoken about the fee structure for MAID in B.C. He told the Victoria Times Colonist that the inadequate fee plan “demonstrates a total lack of knowledge of what goes into this service, a lack of respect for those who are providing it and a blatant disregard for patients.”

More on fee structures in B.C. from Dr. Stefanie Green's conversation with the CBC:

"To tell me that I need to limit my time to 90 minutes, and do it for that kind of fee, is just inadequate.”

Physicians in Nova Scotia have also expressed concern over fees for MAID. Some doctors have not been paid for any of the procedures they've done over the past year. Dr. Tim Holland spoke to CBC about the time needed for MAID cases:

"There's usually a lot more time invested into these procedures, be it the time speaking with the family, the time trying to make sure the assessment is done, collaborating with others — the family physician or palliative care physicians — to make sure the decision is right for the patient."

There is more information on fair compensation for physicians on the DWDC blog: http://www.dyingwithdignity.ca/assisted_dying_fees

In response to access issues in Winnipeg, DWDC submitted an op-ed to the Winnipeg Free Press addressing why public hospitals shouldn’t deny Canadians’ right to MAID.

DWDC's Communications Officer Cory Ruf was also quoted in an unsigned editorial in the Winnipeg Free Press about the lack of transparency over MAID policies at some public institutions.

"How does that protect the public interest?" asked Dying With Dignity’s communications officer, Cory Ruf. "Whose personal health and safety does it actually protect?"

A new care coordination service launched in Ontario in the spring, however, the service does not go far enough. DWDC Physicians Advisory Council member Dr. Chantal Perrot told The Globe and Mail:

I have great concerns about how it’s supposed to operate, and that’s why I didn’t register,” said Chantal Perrot, a Toronto family doctor who has been involved in 20 assisted-death cases. “I am passionately committed to providing MAID, and to these patients, but the care co-ordination service that the province rolled out at the end of May is not a care co-ordination service,” she said. “It’s a matchmaking service that offers no support for physicians and nurse practitioners doing this work.”

DWDC Physicians Advisory Council member Dr. James Downar spoke with CBC’s Metro Morning about why so few doctors in Ontario are providing MAID.

Statistics on who is accessing MAID in Ontario were released in July. Information includes the underlying condition of the patients, where they died and the average age. New stats on MAID deaths on Vancouver Island are also available.

Two days before she died with the help of a physician, Marisa Nini hosted a goodbye party at her apartment in Deux-Montagnes, Quebec. Video footage from her party, including a singalong with family and friends, received more than one million views on FacebookMarisa’s sister, Stephanie, spoke to the CBC about the experience:

"She even said she never thought that she would have so much love," said Stephanie. "She left that way knowing she was that much loved. And that's what makes me happy."

CBC looked at the significance of Advance Care Planning. DWDC Director Sue Hughson spoke about the importance and limits of end-of-life planning:

"I've done the best I can and hopefully this will be honoured. This is also life. You can't plan for everything. That's just part of the natural chaos."

The current law leaves behind many Canadians with intolerable suffering. Twenty-seven-year-old Adam Maier-Clayton was one of those people. Adam asked a lot of tough questions in his efforts to shine a light on how Canada's current legislation discriminates against people on the basis of their diagnoses. CEO Shanaaz Gokool spoke with the BBC about the Supreme Court of Canada's decision decision on assisted dying and how the current legislation doesn't meet the ruling's minimum standards:  

"The Supreme Court justices in that decision could have at any time put 'terminal illness' or 'imminently dying' as part of the decision - they did not," says Shanaaz Gokool, chief executive of Dying with Dignity Canada. "What they looked at was the person, and the level and degree of suffering that they may have, that may be physical or psychological or psychiatric in nature.”

Stuart Hughes of BBC News came to Canada to tell Adam Maier-Clayton’s story. He came to DWDC’s national office in Toronto and interviewed our CEO Shanaaz Gokool. A collection of Hughes' reporting on Adam Maier-Clayton's story can be found here.

Susan Pederson’s best friend, Beverly, accessed MAID following an 18-month battle with cancer. She shares the experience of Beverly’s final days in this Globe and Mail piece.

Toronto’s University Health Network released the story of a 78-year-old patient who accessed MAID at Princess Margaret Cancer Centre. His family and physicians reflected on the experience:

"He had a beautiful end to a wonderful life," says his daughter. "I'm grateful for that."

Stuart Chambers teaches a course on death and dying at the University of Ottawa. In this piece for the Winnipeg Free Press, Chambers maintains that Catholic institutions should not resort to making false justifications in order to avoid providing MAID.

Wayne Chubb of Newfoundland accessed MAID in Toronto earlier this year. Two of the physicians involved in his case reflected on their experience in an article for The Journal of the American Medical Association.

Sally Scales was blocked from accessing medical assistance in dying in her nursing home. She found another way.

Former DWDC CEO and current VP of Advocacy at CARP, Wanda Morris, discusses flaws within the current health-care systems in her National Post column. Life-prolonging technology can keep people alive for months or years, despite not being able to move, feel or communicate, and many surrogates struggle with deciding whether to stop a family member’s medical treatment. This failure to decide can be detrimental to patients, families and healthcare providers.

Noel Conway’s case in the United Kingdom started last month. Conway, a 67-year-old with a motor neurone disease, is fighting for the right to choose an assisted death. The article by the BBC includes a timeline of the right-to-die movement in the UK and the prominent advocates who have moved the issue forward.

More on Noel Conway’s case: https://www.theguardian.com/society/2017/jul/16/terminally-ill-man-challenges-uks-ban-on-assisted-dying-at-high-court

Big-time celebrity Sir Patrick Stewart came out in support of dying with dignity and Noel Conway.

An Ontario woman wrote a letter to federal Justice Minister Jody Wilson-Raybould outlining how the assisted dying law’s mandatory 10-day waiting period prolonged the suffering of her terminally ill father-in-law. We posted her letter to the justice minister on our blog.

Doctors deserve fair compensation for providing medical assistance in dying, writes one B.C. woman whose father received MAID in 2016.

A professor says more provinces should adopt Alberta’s model for MAID implementation.

Dr. David Amies, a member of both our Physicians Advisory Council and our Lethbridge chapter, as well as a former regular contributor to our blog, recently wrote a book on MAID in Canada. Medical Assistance in Dying in Canada, 2017 is available for purchase on Amazon Canada.

A heartbreaking tragedy in Montreal has sparked debates in Quebec over allowing patients with dementia to make advance requests for assisted dying. Health law expert Jocelyn Downie comments:

“It wouldn’t surprise me at all if they said yes to making advance requests for medical aid-in-dying, and then they would have to navigate those constitutional waters.”

Dr. Mike Leckie, a doctor from North Bay, Ont., reflects on being able to help someone access MAID in their final days.

“To be able to assist somebody at that time of their life, when they are suffering and have been told there is nothing more that can be done, is a tremendous privilege.”

For a summary of big news stories from June, please see In Case You Missed It for June 2017.

 


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