One year after Canada's medically assisted dying law, patients face uneven access

"Martha" was stunned when her 78-year-old father told her he wanted a medically assisted death, after battling lung cancer for almost two years. 

"It's something you've never contemplated before in your family," she said. "How do you prepare for this? This date that somebody's going to pass away. It's really hard."

Martha has asked CBC News to use only her middle name, because children in her family don't know that their grandfather's death was medically assisted.  A year after Canada's Medical Assistance in Dying law passed on June 17, 2016, the issue remains highly controversial.   

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But Martha and her sisters supported their father's decision. His cancer had spread to his brain, and he was starting to fall down and lose the ability to use the bathroom on his own. He had always been proud of being a source of strength to his family and couldn't bear what he felt was the loss of his dignity. 

He had also watched both his parents and his former wife die of cancer, and didn't want to risk spending his last couple of weeks in "misery," she said. 

Died 'his way'

Although emotionally painful, the logistical process of receiving medical assistance in dying, or MAiD, was straightforward. Her father was a patient at Toronto's University Health Network, which has developed a comprehensive process for assessing MAiD requests, and then delivering the service for those who qualify through a dedicated intervention team.

"The team that comes in is incredibly compassionate," Martha said. "They were extraordinary."

They gave her father his final injection in March — with his family surrounding him, holding hands. 

"He literally [had] a smile on his face," she said. "He did it exactly his way and on his terms and he had a really beautiful end."

According to data collected by CBC News, more than 1,300 Canadians had ended their lives with medical assistance as of March 31, and that number has continued to climb. Across the country, cancer is the number one underlying condition cited for medically assisted deaths, followed by neurological disorders, such as amyotrophic lateral sclerosis (ALS) and multiple sclerosis.   

'Enormously distressing'

But for other Canadians, access to medically assisted death, even after they've been assessed as eligible to receive it, has not been easy. Some communities don't have enough physicians, nurse practitioners or pharmacists willing to help someone end their life, either in hospital or at home. Under the law, no health-care practitioner can be compelled to participate in a medically assisted death.   

In addition, entire health-care facilities can legally refuse to provide medical assistance in dying, including many faith-based organizations. 

"Catholic health organizations do not provide the medical assistance in dying procedure," said Michael Shea, president and CEO of the Catholic Health Alliance of Canada in an email to CBC News. "They respond respectfully and compassionately to requests for the procedure."

That response can include transferring the patient to another facility that does provide medical assistance in dying. But physicians have expressed concern about the toll that takes on patients who are already critically ill, and not medically fit for transport. 

"[It's] enormously distressing for the patient and horribly distressing for the family," said Dr. Jonathan Reggler, a family doctor in Comox, B.C., who provides medical assistance in death.  

The patient he describes is Horst Saffarek, a Comox resident who had been an active outdoorsman his whole life. Saffarek's lungs started to fail last fall, leaving him unable to breathe without oxygen.  

"Once ... all the tests had been done and his quality of life was not improving and everything like that, Dad made it crystal clear that he wanted to end his life on his terms," his daughter, Lisa Saffarek, told CBC News. "He did not want to go on suffering unbearably." 

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Her father qualified for a medically assisted death. But the only hospital in his community, St. Joseph's General, is a Catholic institution and won't provide it. Saffarek would have to be taken by ambulance to another hospital in Nanaimo, B.C., an hour and a half away, if he wanted to pursue that option.   

"It just broke my heart," said Lisa Saffarek, who is also a registered nurse. "He's comfortable with St. Joseph's. It's been his hospital for you know, like 25 years, right?  Why are we moving him?"

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Last December, on the day of the transfer, Saffarek paced anxiously in the Nanaimo hospital lobby waiting for her father to arrive. 

"I'm thinking, 'is he going to survive it?'" she said. "This dying, elderly man was stuck in the back of an ambulance so he could access his dying wishes."

He did survive, but was "exhausted" when he arrived, Saffarek said. Her father died the next day, before he could access the medically assisted death he had been seeking. Although he still died peacefully, she said, the days leading up to that were chaotic. 

"It was a lot of stress when it should have just been this celebration of my father's life and some peace."

In a statement to CBC News, St. Joseph's General Hospital said it "has a history of moral tradition of compassionate care that neither prolongs dying nor hastens death."

"Should a patient choose to seek MAiD [medical assistance in dying], St. Joseph's staff respectfully, and with compassion, works with the patient, providers and the health authority to provide a safe and timely transfer," the statement said. 

But Dr. Stefanie Green, director of the Canadian Association of MAiD Assessors and Providers, argues that uneven access is a national problem that needs to be addressed.  

"The concept of a publicly funded institution of any sort declaring that they're unwilling to provide a covered medical service, I think is a public health issue. I think every Canadian needs to know that."

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Reggler, who also chairs Dying with Dignity Canada's physicians advisory council, believes the right of faith-based institutions to refuse to offer medically assisted dying will ultimately be tested in court.   

"How can the owners of bricks and mortar have a conscientious objection [to medically assisted dying]?" he said. "Providers — doctors, nurses — of course they should [have that right]. But facilities should not."