In Case You Missed It: March/April 2018

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 March and April?

George and Shirley Brickenden died together on March 27 at their Toronto retirement home, after 73 years of marriage. They are one of the few couples in Canada to receive assisted death together and the first to speak out about it publicly. DWDC CEO Shanaaz Gokool, who was close to the Brickendens, spoke to The Globe and Mail’s Kelly Grant:

“[Dying together] is the final articulation of the love that they’ve had for each other for nearly 73 years.”

You can read George and Shirley’s obituaries here.

In this extraordinary interview on CBC’s The Current, the children of Shirley and George Brickenden speak at length about their parents, the excruciating suffering they both endured, and their decision to “fly away” together.

"We were standing at the foot of the bed, and there was no fear, there was no hesitation. They embraced this process, and they looked at each other.

"The last thing Dad said was, 'I love you all.'"

Listen: DWDC CEO Shanaaz Gokool told Roundhouse Radio's Janice and Cory that stories like Shirley and George Brickenden's give us an opening "to have conversations about the inevitable... with the people we care most about in our lives."

The Brickendens' moving story sparked responses from people all over the country. Devon Hutchinson, of Kitchener, Ont., wrote a letter to The Globe and Mail about his parents who died by suicide together in 2010. In his letter, he wrote about how he wished his parents could have had access to a gentler option:

“I have no doubt that my parents made the right choice. They were both dying of cancer with rapidly deteriorating health. They were so in love, too. I’ve come to realize that if one had had to live without the other for any length of time, it would have been far worse. But the shock of the loss was so terrible for those of us left behind.”

Bob and Noreen Bishop of Haliburton, Ont. accessed medical assistance in dying (MAID) together on the exact same day as the Brickendens, as reported by the Haliburton Echo.

“They held hands, laid back with smiles on their faces, and said goodbye,” said [their son] Steve. “And away they went.”

A group of physicians and assisted-dying proponents are planning to open MAIDHouse, a home dedicated to medical assistance in dying. Shanaaz Gokool, DWDC CEO and member of MAIDHouse’s start-up board of directors, spoke to The Globe and Mail’s Kelly Grant:

“It’s a unique project. It’s the only one of its kind in the country. I think it will really meet the needs of people who – for whatever reason – don’t want to die at home, but want a safe space where their friends and family can gather with them when they’re having an assisted death.”

DWDC CEO Shanaaz Gokool and Richard W. Ivey, chair of DWDC’s Patrons Council, submitted this response to an offensive and incendiary column by National Post columnist Barbara Kay:

“For Dying With Dignity Canada’s part, we will continue to call for more and better palliative care, just as we will continue to serve as the leading defender of the right to medical assistance in dying. Championing one doesn’t mean opposing the other. Canadians want, and deserve, fair access to both.”

DWDC Communications Officer Cory Ruf, wrote a Letter to The Globe and Mail’s Editor on why our organization advocates for better palliative care. (His letter is the fifth from the top.)

“In our view, palliative care and assisted dying are two essential options on a spectrum of care for individuals who are exploring their legal end-of-life choices."

His submission was in response to Ing Wong-Ward’s opinion piece.

Don Kent, from Kemptville, Ont., was diagnosed with terminal cancer in January and decided that he wanted to pursue MAID. In the months leading up to his assisted death on April 20, Don generously chronicled his journey on the DWDC blog. He was approached by CTV Ottawa in March to explain why he wanted to go public with his journey:

“He wants to share what he's experiencing, what he's learning,” says Susan Desjardins, with the Ottawa chapter of Dying with Dignity, “He's putting a human face on the process and helping others to understand why people might make that choice."

You can read Don’s Journey in its entirety by clicking on the following links:

A message from DWDC: We are grateful that our friend Don left this world exactly the way he wanted, held tight by his beloved wife Barb, with his mother and sisters close by, and with Deep Purple’s “Child in Time” playing in the background. In his final months, Don gave us all a raw, intimate glimpse into his life with terminal cancer and his journey towards an assisted death. We know his story will continue to inspire and educate Canadians for many years to come. We will miss him terribly.

As New Zealand debates over whether it should legalize assisted dying, NOTED, a New Zealand publication, ran a piece on Canada’s experience with MAID. Writer Sam Boyer interviewed DWDC volunteers Liana Brittain and John MacTavish, whose spouses both accessed MAID, as well as DWDC CEO Shanaaz Gokool.

“I think [assisted dying] is the most humane thing we can do as human beings for each other. I think everybody deserves the right. In any country … it’s the right thing to do for individuals who suffer and who just say ‘enough.’”

DWDC Clinicians Advisory Council members, doctors Justine Dembo and Jonathan Reggler, along with bioethicist Udo Schuklenk published a paper in The Canadian Journal of Psychiatry on the topic of MAID for individuals whose sole underlying medical condition is a mental illness.

“It is unjustifiable to exclude psychiatric patients from benefitting from a medical intervention that is designed to preserve autonomy and reduce suffering, without giving due consideration to individual variability.”

A report from professors Jocelyn Downie and Jennifer Chandler found that more clarity is needed in the current assisted dying law, especially concerning eligibility. MAID provider and president of the Canadian Association of MAID Assessors and Providers (CAMAP), Dr. Stefanie Green, spoke to the Vancouver Sun about the confusing eligibility requirements:

“Doctors starting out in this field need to feel confident that they are doing the right thing ethically and legally.”

The Delta Hospice Society, which receives funding from both the private sector and the government, is refusing to offer patients the option of MAID on its premises. This letter to the North Delta Reporter was written in response to the brewing controversy over this harmful policy:

“Hospices are specifically for end-of-life care, so why wouldn’t MAID be one of its options? It’s about choice.”

Writer Kenny Ingram wrote a piece for The Manitoban on why the Supreme Court must uphold the right to medical assistance in dying. His column is a response to the increasing number of publicly funded, faith-based institutions enforcing harmful bans on assisted dying on site.

“The Supreme Court should make clear that the beliefs of a religious hospital board cannot trump the right of an individual to choose a legally permitted procedure.”

The B.C. Transplant agency is looking to develop a strategy to better engage and inform MAID patients about the option of organ donation. While British Columbians have embraced MAID at higher rates than any other province or territory in the country, few people have opted to donate their organs and tissues.

CAMAP President and member of DWDC’s Clinicians Advisory Council, Dr. Stefanie Green, spoke to the Vancouver Sun, about why this might be the case: “I think there is indeed a probably unintentional void in the information we have from B.C. Transplant. I know I’m not well-enough informed.”

Quebec politician Diane Lamarre spoke about her mother’s assisted dying choice in this piece published by Le Journal de Quebec. (Article is in French.)

“This decision gave her a lot of strength.”

Nurse practitioners are not always compensated for the work they do to provide MAID. Willi Kirenko, a nurse practitioner in Chatham-Kent, Ont., spoke to CBC News about the issue:

"Some NPs are providing the service during their regular work hours and their employers are covering the cost associated with that work. Others, like myself, are offering it because we can, and we are passionate about improving access."

The North East LHIN in Ontario is in the initial stages of creating a formal network for MAID referrals. CBC News reported:

"We're getting there. [Medical assistance in dying] is a brand new thing so it's a lot of change in the [health care] system to make it be connected to the system and be sustainable."

Law professor Jocelyn Downie took a closer look at patients who starve and dehydrate themselves in order to meet the eligibility criteria for MAID. In this Policy Options article, Downie asked the question:

“Can patients, by stopping eating and drinking, make themselves meet the criteria for a ‘grievous and irremediable medical condition,’ the requirement to access MAID?”

The Nova Scotia College of Physicians and Surgeons clarified the assisted dying law’s controversial “reasonably foreseeable” requirement. Will other provinces and territories follow suit? Professors Jocelyn Downie and Jennifer Chandler wrote a piece for The Conversation on why the law needs clarifying:

“‘Reasonably foreseeable’ does not have a medical meaning because it is reasonably foreseeable that we will all die.”

Advocates in Oregon are following our lead and pushing to give patients with degenerative diseases the right to access assisted dying. The Washington Post reported:

“Their efforts are among several throughout North America that highlight a quiet but concerted push to bring the right-to-die debates to a new frontier: people with dementia, Alzheimer’s and other degenerative diseases.”

Dan Duma was unable to die at home and spent the last months of his life advocating for better access to healthcare. Currently, patients new to Ontario are required by OHIP to wait three months before they can access home care or a bed in a hospice home. Under inter-provincial reciprocal billing agreements, new residents can be admitted to hospital for medical care during the waiting period, but this doesn’t apply to home or hospice care. If passed, Dan’s Law will eliminate the wait period for palliative care patients moving to Ontario from another province. The Windsor Star reported:

Duma never got his wish to die at home, surrounded by family.

“We could have taken better care of Dan,” said [Dr. Darren] Cargill, [Dan’s palliative care doctor]. “It was like trying to care for a patient with one hand tied behind your back.””

Various medical and palliative care associations wrote to the Windsor Star to express their support for Dan’s Law.

“Dan’s Law would prevent future patients, families and caregivers from experiencing unnecessary hardship as a result of this lack of access to needed care.”

The Vancouver Island Health Authority put out a Request for Proposals for 120 new residential/complex care beds. The group Equal Access Comox Valley is calling on VIHA to only consider bids from organizations that respect the right to assisted dying.

You can sign the petition by clicking here.

Caren McCracken accessed her right to MAID on March 28. Her friend, TVO’s Steve Paikin, reflected on her decision:

“Caren McCracken was determined to have the final say during a process in which she had no say over her destiny.”

One family shared their assisted dying experience with Hamilton Jewish News. Mark Eisenberg wrote about his dad, Saul, and their final moments together.

“With his partner Sandra and me holding him, and with my wife Shelli and our children surrounding us, our brave warrior calmly laid back, closed his eyes and smiled as the injections did their deed in a gentle manner.”

B.C.-based artist Paula O’Brien shared this stunning account of her husband Dennis’ assisted dying journey. She tells the story of their life, his choice, and their final days together through loving words; vibrant, clever art; and personal photographs.

“We did not have to experience the potential of his falling from his muscle wastage or the noise and drama a week in the hospital at the end would have delivered. Instead he had the peaceful and well-loved surroundings of home. Who could ask for any better way to go[…]?”

Research shows that up to 70 per cent of seriously ill, hospitalized elderly Canadians are receiving end-of-life treatments they don’t want, according to this article on The Conversation.

“Why is this happening? Often, it comes down to a lack of communication. Even though studies have shown that seriously ill patients and families have identified end-of-life communication and decision-making as high priority targets for quality improvement, these conversations are typically ‘too little, too late and not great.’”

For Halifax’s Audrey Parker, who has terminal breast cancer, assisted dying is an opportunity to control the terms of her death. She shared her story and incredibly uplifting spirit in this piece for The Chronicle Herald.

“This is how eager Parker is to share her story: A journalist is supposed to be among the people there with her when she dies. ‘I’ve shared everything,’ as she puts it, ‘why not share the end of my life?’”

At the end of April, friends of Weldon Bona held a MAID information session in his memory. Bona was a Cape Breton man who encountered a number of obstacles on his quest for an assisted death. DWDC board member and retired senator Jim Cowan spoke on the educational panel, along with professor Jocelyn Downie, MAID provider Dr. Robyn MacQuarrie, and lawyer Gail Rudderham Chernin.

More than 50 people attended the session, which was covered by CBC News Nova Scotia and the Cape Breton Post.

“He knew what he wanted and wasn’t afraid to go out and make that happen. I think he would be pleased he inspired a conversation to be started.”

Canadians who are found ineligible under Canada's assisted dying law are taking desperate measures to relieve themselves of their suffering. A Saskatchewan man, who held his wife as she took her own life because she did not qualify for an assisted death under Bill C-14, spoke on The Roy Green Show about their heartbreaking story. The man was arrested and charged for failing to provide the necessities of life, and is waiting to see if the Crown will move forward on these charges.

“He said if his wife had qualified for MAID, it would have taken away the uncertainty and stress of planning it herself and she could have been surrounded by more family members.”

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