‘I am proud of him, he trusted me completely’

By sharing the lessons of her husband’s final weeks, Heather Ross has ignited a public dialogue on barriers to assisted dying access in Quebec.

Heather Ross made a promise to her husband, Bob Blackwood, in the days before he died. She vowed she would raise her voice about their weeks-long struggle with local health officials over his request for medical assistance in dying (MAID). Confronting staff in the hallways of the Quebec hospital where he was receiving palliative care, demanding second opinions, and handing Bob’s doctors anguished passages of his poetry to reveal the depths of his suffering — these tactics proved effective in motivating his doctors to give the matter of his eligibility for assisted dying another look. “I had to fight like I never had to fight before for anything in my life to help my husband die with dignity,” she said. Neither she nor Bob wanted anyone else to have to go through the same ordeal.

Quebec's Bob Blackwood died with medical assistance on Aug. 18, 2017.

In the more than 14 months since Bob’s death on August 18, 2017, Heather has continued to fight for the rights of individuals and families navigating difficult end-of-life decisions. Her campaign to honour her husband’s last wish has seen her file a formal complaint to the Eastern Townships hospital where Bob died, participate in an exclusive CBC news story on barriers to assisted dying access in Quebec, and foster a dialogue in her local community about choices at end of life. In doing so, Heather has afforded the country a glimpse into the outsized and challenging role family advocates often play in defending a dying loved one’s rights and wishes.

Heather’s campaign began in February 2018 by her fireplace, where she wrote a letter of complaint to the hospital in Sherbrooke where Bob spent the last seven weeks of his life. “I would like to begin by saying that I have a tremendous respect for our medical system and those who work in it,” Heather wrote in her introduction, “but I am very concerned about how policy and rules are severely interfering with [a] patient’s access to proper care and services, in particular, palliative care, palliative sedation and medical aid in dying.” She then explained the chain of events that led up to, and that followed, Bob’s request for assistance in dying.

A former lawyer, Bob was a “generous, compassionate and deeply reflective man” whose life was radically altered when, in 2010, he was diagnosed with Parkinson’s disease. In 2016, Bob’s diagnosis was revised to multiple systems atrophy (MSA). More common in men than women, MSA is associated with Parkinson’s-like symptoms but advances at a more aggressive pace.

By early 2017, Bob was in constant, excruciating pain and his mobility was deteriorating fast. He suffered shooting pains in his leg that would strike without notice. He experienced constant cramping, starting with his arm and later spreading to the entire left side of his body. His hands would go numb one moment and feel like they were on fire the next — a consequence of the havoc the disease was wreaking on his circulation. Making matters worse, the Parkinson’s drugs Bob had been prescribed no longer had any impact on him, beyond their unpleasant side effects.

This is how Bob described his pain in a poem he wrote about a time he was sitting alone in his workshop: “My leg cramped so completely one roaring bite of tension trying to burst open my skin/My feet afire my jaw staccato pulsing teeth grinding I swear to you.” By June 2017, sleep was the only true respite for Bob, but it only came to him — sporadically, in waves — with the help of strong medications.

Bob's wife, Heather Ross, vowed to speak out on the barriers he encountered in his plight to access assisted dying.

Bob entered palliative care at Hotel Dieu, the local teaching hospital in Sherbrooke, on July 7. The original plan was for Bob to “only be there a week or two while the staff tried different medication combinations,” Heather said. But in her estimation, the palliative care protocols in place at Hotel Dieu failed Bob because they were designed with terminal cancer patients in mind. At one point, staff arrived at a formulation of drugs that allowed him to sleep for hours at a time. They quickly became uncomfortable with the slowing effect the combination had on his breathing. “Instead of evaluating Bob as an individual case, they kept to their cancer protocol and decreased the only medications that were actually helping Bob,” Heather wrote in her complaint. “He became more symptomatic and unable to sleep because they were afraid he would stop breathing and die.”

As doctors and nurses fretted about preventing Bob’s death, he was preparing for it. He had already asked about MAID before he was admitted to Hotel Dieu. Dr. Carl Bromwich, the palliative care specialist who had referred Bob to the hospital, said it was an option. Now, in agony and incapable of sleep, Bob came to the conclusion that he was ready. Life had become unbearable, he determined, with little prospect of getting better.

‘No one would help Bob’

Assisted dying became legal in Quebec in December 2015, six months before it was legalized in the rest of Canada and more than 18 months before Bob made his formal request. One might think that Quebec’s head start on the rest of the country would translate into easier access for the province’s residents, but that hasn’t necessarily been the case. Quebec’s eligibility requirements for assisted dying are more restrictive than those laid out in the federal Criminal Code. What’s more, doctors in the province are receiving conflicting directions over which set of rules to follow. Given the lack of clarity, it is hardly surprising that clinicians in Quebec would tread conservatively when it comes to assessing a patient’s eligibility for MAID. Ultimately, it is people like Bob and Heather who must shoulder the heaviest burden.

In order to qualify for assisted dying, a person has to be assessed and approved by two doctors or nurse practitioners. Dr. Bromwich provided Bob’s first eligibility assessment, approving him in the last week of July.  A local neurologist met with Bob and Heather the following week to provide a second assessment. “It was obvious to us that this doctor’s mind was made up before he even came into the room to see Bob,” she told the hospital in her complaint. “He said Bob did not look sick enough and that he should starve himself for a few weeks or go to the Netherlands for the procedure.” A day later, Bob and Heather learned he was also ineligible for palliative sedation because, as a patient with a vicious but mysterious condition and an unclear prognosis, he didn’t fit the hospital’s protocols. Refused an assisted death and the option of deep, medicated sleep, Bob told Heather he was seriously considering suicide.

Bob was an outdoorsman who enjoyed riding motorcycles in his spare time.

Heather found herself in an intractable position, left at once to stop her husband from harming himself and to take on the medical institution that, in her words, had abandoned him. “No one would help Bob while his pain and suffering was intensifying,” she wrote. “I had to start challenging the hospital and staff on these issues, daily, which caused a tremendous amount of stress trying to help my dying, extremely distressed husband.” She resorted to “ranting and raving in the halls many times.”

Her approach succeeded at getting the attention of hospital brass, and they agreed to schedule a meeting with her for the following week. “In the meantime Bob had to suffer through the weekend seriously making plans to kill himself because he could not take it anymore. Fortunately each time this happened, I was able to talk him out of it by giving him hope that maybe this time, they could help him.”

At first, the tenor of the meeting didn’t instill much hope in Heather. “We went around in circles about policies and protocols,” was how she described the scene in her complaint. Finally, when Heather revealed to the group that Bob was strongly considering suicide, one of the doctors present volunteered that a third assessment for MAID could be arranged. Up until that point, Heather had no idea that a third assessment was possible, and she was furious that no one had raised the option earlier. Regardless, it was a breakthrough, and one that would ultimately lead to Bob getting his wish.

‘Motivated to change the world’

That same determination led Heather to contact Dying With Dignity Canada’s national office in May 2018. Awaiting an official response to her complaint, she was searching for other ways to help. “Every once in a while, we receive a call out of the blue that, in a matter of minutes, elevates our understanding of how assisted dying is working in one corner of the country,” said Cory Ruf, DWDC’s communications officer.

“Heather’s call was one of those. Here was someone who not only had overcome long odds in helping her husband access his right to assisted dying, she had clearly done a ton of thinking about what happened and wanted to see the lessons she had learned put to good use.”

Cory and Heather had several conversations over the spring and summer about how she could shine a light on barriers to assisted dying access in Quebec. Then, with Heather’s blessing, Cory approached Kate McKenna, a CBC Montreal reporter with experience covering the impacts of Quebec’s restrictive assisted dying rules.

Kate was immediately interested in the story, and Cory introduced Kate and Heather over email. On August 14, Kate visited Heather at her home near Sherbrooke. During their hours-long conversation, Heather told Kate about Bob, his journey with MSA, the battles at the hospital that followed his request for assisted dying, and his desire to become the first MAID recipient in the Eastern Townships to donate his kidneys.  

“What really stood out to me was Heather’s bravery and openness,” Kate told DWDC in October. “It’s not easy to talk to a journalist about deeply personal issues. I was also really struck by how motivated she was to make the system better for other people. She was motivated to change the world, and I was really touched by that.”

Kate’s 1,500-word article on Heather and Bob’s story went live on the CBC’s website on the night of September 18, in the middle of Quebec’s provincial election campaign. Segments for radio and the evening TV news followed the next day. The story featured powerful quotes from Heather as well as photos of Bob that conveyed his passion for being outdoors and riding motorcycles.

Bob and Heather hiking in New Hampshire in 2013.

Kate’s coverage zeroed in on the confusion created by the province’s dual set of assisted dying rules, and how that confusion led to breakdowns in the handling of Bob’s request. The province’s 2014 law limits assisted dying access to only those people who are terminally ill or “at end of life,” which usually means patients who have no more than six or eight months left to live. The federal law is even vaguer. Rather than imposing an approximate time limit, it requires that a person’s “natural death be reasonably foreseeable.” On one hand, this language in Bill C-14 has beguiled many clinicians, suffering Canadians and their loved ones, and human rights advocates alike; on the other hand, it does afford doctors and nurse practitioners added flexibility when assessing a person’s eligibility for assisted dying.

Referenced in Kate’s reporting was the letter the hospital sent Heather in response to her complaint. In his letter, medical complaints examiner Dr. Tewfik Nawar noted that Quebec’s medical regulator is instructing physicians to follow the provincial rules. Despite being more limited in scope than Bill C-14, the Quebec law still “contains grey areas that leave (small) place for clinical judgment and explain [the] sometimes divergent points of view, even between palliative care experts,” he wrote. “The people involved in Mr. Blackwood’s care all considered that his condition would have justified MAID. The main disagreement was whether or not the end-of-life criterion was met (or should be).”

By going to the press, Heather has lifted the curtain on the human impacts of the unclear and conflicting assisted dying rules in Quebec. The response to her story has been “incredible,” she says. “The most common response is that people are appalled and angered by the fact that Bob suffered so much,” Heather told DWDC in a recent interview. “They were really quite shocked that he didn’t have access. And then when I explain more, in terms of the different laws, they were very concerned about the discrepancies and how Quebecers really don’t have the same access as the rest of Canada, and also that access itself is just so unclear if you don’t have cancer.”

A legacy of giving

Compiling a lengthy complaint and sitting for interviews aside, Heather honours Bob mostly in ways that are smaller and more personal. On a road trip this summer, she found herself in a small-town pub that was holding a poetry open mic. She penned a short poem in French on the legacy of giving that has emerged from the tragedy of Bob’s death. “My husband’s neurologic suffering was replaced by peace,” she told the other patrons when it was her turn at the mic. “While his spirit flew towards God, his kidneys saved the lives of two Quebecers.

“I am proud of him, he trusted me completely,” she said, before concluding with a line borrowed from French-Canadian poet Patrice Desbiens: “L’amour, c’est pas pour les peureux.” Love, it’s not for the faint of heart.

—Cory Ruf

(All photos courtesy of Heather Ross)

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