Out in the wilderness’
Chapman believes it will be a long time before the age threshold will be challenged in the courts. For one, a gravely ill child plaintiff would likely be dead before the matter gets to court. And any parents who choose to do so would be exposing themselves to a firestorm of attention and scorn.
“I assure you that, at some point, someone is going to go to the Netherlands before they go to court. What might have to happen is that a special interest group would lead a court case.”
On the other end of the spectrum, some are concerned that they will be pushed into actions against their conscience. An online survey of 1,407 physicians by the Canadian Medical Association released in August 2015 found that 29 per cent would consider providing medical assistance in dying, and 63 per cent would refuse. This might not draw an accurate picture of what physicians really think, given the sample size. There are about 65,000 doctors in Canada.
On Oct. 1, an umbrella group that represents three faith-based physician groups, filed an application for a judicial review of a College of Physicians and Surgeons of Ontario requirement that physicians directly refer patients who request assisted death to a practitioner who is willing to help. The coalition argues that, in every other province, physicians have a “workaround” for the requirement to directly refer, such as by offering a ministry phone line.
“It’s not just us. Many other doctors don’t want to be morally responsible for this,” says Larry Worthen, a spokesman for the group. “We wouldn’t obstruct patients. We just ask that we not be morally implicated. All doctors want to be there for their patients. For evangelicals, Roman Catholic and Orthodox Jewish doctors, the referral itself is participation in the act. It is morally problematic.”
For some, the unwelcome optics of being associated with helping to to end a life are likewise problematic. Rick Firth, president and CEO of Hospice Palliative Care Ontario, says assisted death is “not a service that is part of the continuum of hospice palliative care.”
About 7,000 people who receive care every year in Ontario hospices. The province announced in its February budget that it was adding another 20 hospices.
Hospices struggle with the idea of assisted death. Firth says 60 to 70 per cent of Ontario’s 43 hospices are adamant that assisted death will not happen on their premises. While about half of hospice funding comes from government, the remainder comes from donors. Many have had family or friends die in hospice care. Any association with assisted death “could alienate the donor base,” he says. “We’re very concerned.”
Still, Firth knows the question will inevitably come up. Hospices have worked with legal advice to come up with a policy and came up with three scenarios: Some hospices are on the grounds of religious orders, and these may opt to decline to allow assisted death on their premises. If there is a rare case where a patient insists, assisted death may have to be performed elsewhere. In the second case, a hospice may object, but will still allow assisted death to be provided by the patient’s doctors rather than abandon the patient. In the third case, some hospices may choose to allow it.
“Our goal is to help people live to the end of their natural lives. When people get good hospice and palliative care, the desire for assisted death disappears,” Firth says. “In other jurisdictions, people will seek assisted death as Plan B. They won’t go there if they get good palliative care.”
Karen Nicole Smith says doctors have told her it’s hard to tell how long she could live with the cardiac cancer. It could be a month, or a year or 10 years. It is the timeconsuming dialysis that she finds draining.
“There is a tediousness,” she says. “It’s like that movie Groundhog Day every day.”
Karen Nicole Smith is living on borrowed time.
Now, she plans to use a loophole as her exit strategy. Sometime in the next few weeks, she plans to simply stop her dialysis treatment and die peacefully at her home in Kingston.
“I don’t have to do anything drastic. I don’t have to break any laws,” she says.
“It is a very loving and closely monitored process. It’s not uncharted territory. I can have a nurse in the room, and I can be in my place, and family and friends can come over.”
Smith’s case is a complicated one. Now 44, she was diagnosed with kidney and heart failure in her late teens and has been living with chronic disease for her entire adult life. A kidney transplant she received in 1996 failed in 2009. She has been on home dialysis since then.
Last December, surgeons discovered angiosarcoma, a rare form of heart cancer, during emergency open-heart surgery.
It was unclear how long Smith would survive with the cancer — it could be a month, a year or 10 years.
The only treatment offered was a round of chemotherapy followed by surgery and more chemo.
“If I have a year left, or 10 years, I don’t want to spend months of it dealing with and recovering from chemo. From my perspective, doing nothing was the right choice,” says Smith, an actor and the community outreach co-ordinator for Queen’s University’s standardized patient program, which uses actors to provide training experiences for medical, nursing and rehabilitation-therapy students.
Smith opted to go with Plan B. Eventually, the cancerous mass in her heart will mean that dialysis is no longer effective.
Before that happens, she plans to stop dialysis.
Over the course of several days or weeks she will become sleepy, eventually slip into a coma, and her heart will stop beating.
Kidney-failure patients can opt for dialysis in hospital or at home. While the process does not cure kidney failure, it does the job of cleansing the blood of waste, excess fluids and toxins. But it can be a time-consuming process.
Smith spends five hours on dialysis every few days, attached to the dialysis machine through a tube inserted into a permanent catheter in her chest.
The Kidney Foundation of Canada advises patients that they have the right to make their own choices about how they are treated for kidney failure.
Opting to withdraw from dialysis or not start it is not considered suicide. A 2008 study of 584 Canadian end-stage renal patients published in the Journal of the American Society of Nephrology found that 61 per cent of patients regretted their decision to start dialysis.
At the time, the annual mortality rate of dialysis patients was 20 to 25 per cent.
Other people reaching their end of life don’t have the same ability to choose the time and circumstances of death, Smith says.
“I’m just hoping that the right people will read this. And they will change their minds or think differently about someone they’re taking care of. I hope it will touch lives, then can makes things better.”
Despite receiving a grim prognosis last December, Smith says she has chosen to live. Since learning she has angiosarcoma, she has competed in her first horse show, taken yoga and skating classes and gone on spa weekends and road trips.
She says she will live only as long as she is happy with her quality of life — and she sees that time coming soon.
Even if she had 12 months or more to live, Smith says, she doesn’t want to spend the rest of it on dialysis.
“Even if I had a year or more to live, I wouldn’t want that time. Those years would be more years on dialysis.”