‘My life … is hell on Earth’: Parkinson’s patient battles barriers to assisted death
The bubbly is chilling. The lobster flown in from Nova Scotia is unpacked. The sound of jazz and laughter fill the room.
In a small apartment in Toronto, an intimate gathering of family and friends is ready to celebrate a life well lived. And a woman’s triumph in determining when, and on whose terms, her life would come to an end.
The guest of honour is 64-year old Nancy Vickers.
“I’m wearing a brassiere,” she announces to the gathering. “I haven’t worn one for such a long time.”
That’s Nancy, the “free spirit,” says her long-time friend and one-time lover, Dalil Kabbage. “Classic but wild,” he says, “a pure product of the 70s.”
But in recent years, that free spirit has been a prisoner to deteriorating health. Vickers was diagnosed with Parkinson’s disease in 2005.
“Parkinson’s takes away your life. Chisels it away day by day, bit by bit,” she told CBC News.
It’s the reason she summoned this small group to her home on a blustery November day. It’s a final goodbye.
Soon, with the help of a physician, she’ll slip away to her bedroom and get a medically assisted death.
It’s a victory for Vickers. Ending her life on her own terms was always her wish, and she said she was buoyed when assisted dying became law in Canada last year.
“I’ve had such a full life,” she said. “I’m so lucky that I’ve been able to travel and have wonderful friends all over the world. I don’t want to become the drooling vegetable mass that I do sometimes become already.”
Her cousin, Jane Watanabe, supported her decision. “I think she had people saying, ‘Oh Nancy, you don’t mean that. You don’t want to do that.’ But she does. She really, really wants to do it.”
Getting what she wanted, though, proved to be a challenge. There were unexpected roadblocks as she pursued her choice of a medically assisted death — an option more than 2,500 people in Canada have taken since it became legal across the country in June 2016.
With her condition worsening, Vickers needed to find a doctor who could help her die.
The obvious choice was her family physician, Dr. Paul Cramer.
“It was late winter. She called me, asked me what I thought about it,” Dr. Cramer says. “And I said I agree. And I would help her.”
But after consulting with the Canadian Medical Protective Association, a group that provides legal advice to doctors, Dr. Cramer was advised by a lawyer that Vickers’ illness didn’t fit the new law’s eligibility criteria. That is, that a death has to be reasonably foreseeable in order for the patient to qualify for a physician-assisted death.
“It puts a degree of pressure on the doctor to have to predict when a patient is going to die,” Dr. Cramer says.
“Each case is absolutely different,” counters the CMPA’s Dr. Todd Watkins.
“We never tell a physician that they can’t do something, or that they can go ahead and do something,” he adds.
“Our advice is, what is the risk? What’s our interpretation of the patient they have in front of them, that patient’s condition, how it fits within the eligibility criteria? And if we feel that they don’t meet the eligibility criteria based on a reasonably foreseeable (death), we’ll tell the physicians we have concerns in that area.”
Vickers’ family doctor was worried by the CMPA’s response about her case.
“I would need some assurance that I would not be arrested or sent to jail,” he told CBC News.
Without that assurance, Dr. Cramer said, he couldn’t help Vickers.
Down but not defeated, Vickers and her cousin Watanabe struggled to navigate a bureaucratic provincial health care system, and a medical community unclear of what Canada’s law allows them to do.
“I will keep pushing until I get my own way,” Vickers told CBC News as it followed her case. “My life these days is hell on Earth and I don’t want to be here anymore.”
Eventually, Vickers contacted the Ontario Ministry of Health directly. Earlier this year, it had set up a phone service that helps patients access information for people seeking medical assistance in dying.
But this led to more frustration for Vickers.
“There were phone numbers that were given to us that you had to be a medical professional to access,” says her cousin. “There’s supposed to be a register of medical professionals who are able to sign off on (medically assisted dying), and we couldn’t access that.”
It took several attempts to find the right information, but Vickers’ calls finally led her to a Toronto doctor.
“When I first met Nancy I saw someone who was frail, who could hardly walk to her own washroom, who was confined to the spaces of her own apartment,” said the doctor, who asked not to be identified because their family is deeply religious and does not know they are assisting people in death.
The physician agreed to help her.
Why does one doctor say yes and another say no to the same patient? Vickers’ story highlights a dilemma playing out across the country, according to Dying with Dignity CEO Shanaaz Gokool.
“The eligibility criteria creates inconsistent access that’s based upon how a clinician interprets the legislation,” she says. “It’s a problem, because from one end of the country to another, from one hospital to another, there are different directives.”
The doctor helping Vickers understands why some colleagues like Dr. Cramer are reluctant to be involved in helping someone die.
“I think Nancy’s family doctor had the best of intentions when he tried to find out if this is someone who qualified. We’re doctors, we’re not lawyers. We’re not trained to interpret the law, to know how to apply it when it’s vague.”
Gokool points out that confusion interpreting the law is also putting a burden on patients, many of whom are already overwhelmed by the stress of coping with their medical conditions and may not be equipped to navigate the medical and legal systems.
“Nancy’s case illustrates a woman with a very clear conviction,” Gokool says. “She was very determined, (she) could advocate to some extent for herself.”
For its part, the CMPA says it is comfortable with the advice it offers doctors, given the complexity of the issue.
“We’re kind of blazing a trail in this country,” says the CMPA’s Dr. Watkins. “This is very progressive for us as a country. It’s all new. We’re moving ahead in a very measured way, which I think is the right thing to do. It’s not always straightforward and easy.”
Several days before Vickers’ farewell party, her physician checked on her to review the paperwork and make sure everything was in order.
“You know, of course, you can change your mind at any time,” the doctor told her. “It doesn’t affect any of the medical care you get.”
Vickers took the doctor’s hand. “I’m just so happy that you’re going to be there,” she said.
On Nov. 9, after the farewell celebration at her apartment, Nancy Vickers — surrounded by her nephew Ben, cousin Jane and her two closest friends — was given four injections.
“She went just like she wanted to go,” her friend Dalil Kabbage says. “Easy. Peacefully.”