End-of-life clause in assisted dying law causing undue suffering, says Quebec woman

A year after Bob Blackwood's medically assisted death, Heather Ross feels his presence every place she turns at their homestead in Cookshire, in Quebec's Eastern Townships, where the couple had shared dreams of growing old together.

The wind in the trees, the frogs croaking at their swimming hole, the playful nudges from their horses: it all gives her comfort.

She's taken time to grieve, and now Ross, a veterinarian, is moving on to the next stage of her life: speaking publicly about her quietly intense and athletic husband and about the shortcomings of assisted dying in Quebec.

Ross has filed an official hospital complaint about the circumstances leading up to Blackwood's death in August 2017. She believes his suffering was prolonged unnecessarily by systemic confusion over the application of Quebec's three-year-old assisted dying law, which she calls vague and too restrictive.

"It needs to be clarified," she told CBC News. "We need to see strong leadership in resolving this very, very important, critical issue so that families and their loved ones don't suffer to the degree that my family did."

It began with a tremor

When Blackwood, a Lennoxville lawyer, first noticed a tremor in his left arm in 2010, he thought he'd sprained his shoulder chopping wood. Several doctors' consultations later, he got the first unwelcome diagnosis: Parkinson's disease.

For a while, Blackwood could still do his favourite things: tinkering in his workshop, riding his motorcycle. The bike's vibration helped mitigate the tremor in his arm. On the bike, he felt free.

But the illness progressed rapidly, leading by 2016 to a diagnosis of multiple system atrophy, or MSA, for which there is no cure.

Soon after that diagnosis, Blackwood began suffering from stabbing pain in his leg that came without warning and constant cramping first in his arm, then downthe whole left side of his body, from his jawto his toes.

His hands would lose circulation then regain it quickly, the sudden blood flow making them feel like they were on fire.

"Walking on a bed of coals is how he described it," said Ross.

He felt nauseatedall the time. He would stand and stumble, in a woozy daze. Worse, he couldn't sleep. He was exhausted, in constant pain, and medication wasn't helping.

Within six months, Blackwood was committed to the palliative care unit at the CHUS-Htel-Dieu teaching hospital in Sherbrooke. The cocktail of medications he received there helped him sleep, but after two weeks, medical staff stopped prescribing that mix, afraid they'd make him stop breathing.

The resulting sleep deprivation was torture, Ross recalls. For the first time, her husband started expressing suicidal thoughts, telling her when they were out for a walk he wanted to throw himself in front of a bus.

When is 'end of life?'

With the palliative care no longer providing relief from his suffering, Blackwood applied for a medically assisted death.

It was denied, because one of the two doctors who examined him determined he wasn't close enough to a natural death to be eligible under the Quebec law, which requires patients to be at the "end of life" to qualify.

"I'm just appalled that my husband was denied, based on that one clause that is totally undefined and leaves the doctors in this sort of difficulty in trying to interpret what it means," said Ross.

"It is unjust."

Quebec was a pioneer in 2014, when it became the first jurisdiction in Canada to legislate medically assisted death.

Ushered in by Parti Qubcois MNA Vronique Hivon after lengthy consultative hearings by an all-party committee that travelled the province, the bill passed in National Assembly with overwhelming support.

A short time later, a Supreme Court ruling forced the federal government to amend the Criminal Code in 2016, legalizing assisted dying in the rest of the country.

But because Quebec already had a law on the books, the province's College of Physicianssaid doctors in the province have an obligation to respect the provisions and terminology in the provincial law.

'Not very clearly defined'

The federal law requires that the natural death of a patient who applies for assistance in dying be "reasonably foreseeable."

In Quebec, the law has been interpreted as meaning the patient has less than a year to live. However, a recent court judgment in Ontario Superior Court says that clinicians elsewhere in Canada don't need to estimate the prognosis of a patient before approving the assisted death application.

Dr. Carl Bromwich, a palliative care specialist who spoke to CBC with Heather Ross's permission, is the doctor who approved Blackwood for an assisted death the first time he applied, concluding he had less than a year to live.

Bromwich said Quebec's "end of life" criteria is open to interpretation usually considered to be less than six months or less than a year.

"It's really not very clearly defined," he said.

He knew because of the nature of Blackwood's disease, and because MSA usually progresses more slowly than Blackwood's did, that the case would be considered "borderline," so he wasn't surprised when the second doctor refused Blackwood's request.

But he said there was no doubt that Blackwood was suffering.

Pleadingfor help

After her husband's request for an assisted death was denied, Ross spent her days with him, massaging his body at all hours to try and relieve his pain and trying to talking him out of hurting himself.

In the complaint she filed with the hospital, she describes crying and pleading with medical staff for help in getting an assisted death approved.

At last, a hospital committee agreed to meet her to discuss her husband's case. That's when she learned she could seek an opinion from a third doctor.

I think the only reason I was able to stay standing to be there for my husband, to take it to the next level, is because I am a very strong person.- Heather Ross

He examined Blackwood and said yes, almost immediately.

Before Blackwood'sdeath, he and Ross talked about their options, and he asked her to tell his story publicly when she was ready: he said he wanted her to tell Canadians about the additional suffering he endured.

It was Blackwood's wish to donate his organs, so after Bromwichadministered a lethal dose of anestheticintravenously,Blackwood'skidneys were harvested, saving the lives of two other people.

That was only the second time a patient who had had an assisted death in Quebec donated their organs.

Bob Blackwood died on Aug. 18, 2017.

Ross remembers the day of his death fondly: the medical staff were so kind. The cocktail of drugs Blackwood took prior to being put to sleep to receive his final doseput him in a great mood. The room was quiet, but for her, her husband, the doctors and nurses.

A complex case

Ross took a few months to grieve before filing her complaint with the hospital. In it, she outlines the challenges she had with the hospital bureaucracy and how she felt unsupported by medical staff as she and Bob tried to access assisted dying.

They felt bounced around by all the different doctors assigned to Blackwood's palliative care, as he was in hospital during summer vacation.

Until she pressed for a meeting, Ross hadn't been told it was possible to request a third doctor's opinion.

The whole process took a huge toll, she told CBC.

"I think the only reason I was able to stay standing to be there for my husband, to take it to the next level, is because I am a very strong person," she said.

The hospital responded in a letter addressed to Ross, saying despite difficulties, "the patient received quality care from a very dedicated staff."

It said Blackwood's situation "required more complex care than usual, and the staff tried to meet the needs as best as possible."

In its letter, the hospital does include suggestions, some of which it said are already implemented, including having one member of the team assigned to interact with the family, establishing a support group for families of patients in palliative care, and a training program for staff on the medical aid in dying legislation.

One of the hospital's own suggestions listed in the letter is "changes to the law?" The question mark is verbatim.

A spokesperson for the CHUSHotel Dieu did not respond to a request for additional comment from CBC News.

"We see Heather as a very informed advocate, really doing everything she possibly could to have Bob's suffering relieved," said Shanaaz Gokool, the CEO of the national advocacy group Dying with Dignity.

Gokool said the case underscores how imperative it is that federal and provincial legislation not contradict each other.

"I think their case really illustrates how when those two pieces of legislation buttress up against each other, it leaves clinicians in a very difficult place, and it leaves families in very, very difficult circumstances," she said.

Gokool said she hopes by bringing her husband's story to the public, Ross will influence Quebec's College of Physicians to "direct clinicians to follow the Criminal Code of Canada."

But she also says Canada needs to take its law further and re-examine the "reasonably foreseeable death" clause, saying it excludes people who are suffering terribly but may not be on death's door.