Baby boomers, who have grown up expecting to control their lives, want the same when it comes to their deaths. Is that a basic human right?
Susan Griffiths, a Manitoba 72-year-old with a degenerative neurological disorder, went to Zurich this month to a clinic that practises assisted suicide, because she feared if she delayed, she would not be able to have the peaceful death she wanted in this country.
Meanwhile, for the second time in 20 years, the law against assisted suicide is before the courts, in a challenge that will probably go to the Supreme Court.
But a group of notable Canadians, including actor Gordon Pinsent, actor Sheila McCarthy and Senator Sharon Carstairs, are trying to call attention to this aspect of death and dying: they've collaborated with visual artists to create "legacy blankets" to raise awareness of Advanced Care Planning Day next Wednesday, April 16.
We went to Balfour Mount, who coined the term palliative care, for a perspective on how his influential idea has been implemented and how to think about the end of life.
As a rising urological surgical oncologist in the 1970s, he was persuaded by Elisabeth Kubler-Ross's book, On Death and Dying, to conduct a survey of terminally ill patients at the Royal Victoria Hospital in Montreal. He was shocked by how many were dying in physical and psychic pain.
After studying with Dame Cicely Saunders in England at her London hospice, St. Christopher's House, he opened Canada's first palliative-care ward at the Royal Victoria in 1973.
Dr. Mount, who will be 74 on Sunday, has dealt with his own health problems – including testicular cancer in his 20s, metastasized esophageal cancer in his 60s and a heart attack. Now retired, still in Montreal, he is writing a family and medical memoir.
What was so shocking about the way patients were dying at the Royal Vic in the 1970s?
We found disastrous communications, isolation, abandonment, and very poor control of pain and other symptoms. These were good surgeons, not people with fangs with one eye in the middle of their foreheads, so if their patients were having problems, so were mine.
One of them was Carol, a 20-year-old nursing student who was dying of ovarian cancer. Her kidneys weren't working well and I was asked to consult. I didn't have time to visit the patient, so I read her X-rays, although there was little I could do to improve her medical situation.
When I did go to see her, I asked if she knew about Kubler-Ross and she said, "Yes, she has taken all the fear out of dying." I felt like I had been kicked because Kubler-Ross had been at McGill and I hadn't introduced them.
Another time, Carol's father was in her room and they were talking about anything but what was on everybody's mind. I took him into the hall and told him about a conversation I had had with Carol earlier that day.
She had squeezed my hand and asked, "Do you think there is a life after death?" And then she said, "I sure hope so," with an ironic little smile. When her father went back in, they talked and they were able to support each other.
The time to talk about something with a terminally ill patient is when you think about it. Don't put it off.
How did you come up with the term palliative care?
I visited St. Christopher's hospice and was greatly impressed by the excellence of the care they were giving. I thought hospice would be a great name, but for francophones the word carried the implication of les hospices in France, which had a reputation for mediocre, warehouse care.
Looking for a different term raised the possibility of the word "to palliate," which means to mitigate or improve the quality. Dame Cecily Saunders was not impressed, but we used it anyway. I was delighted when in 1987 the Royal Colleges of Edinburgh and London made it a new specialty called palliative medicine.
I read a survey from the Canadian Hospice Association that says 16 per cent to 30 per cent of Canadians have access to palliative care. Is that good enough?
I'm skeptical of statistics. What it really means is that they have access to something that calls itself palliative care. It is exactly 40 years since we did the study at the Royal Vic, for crying out loud. And given the significance of the findings why haven't we done more, especially since we are on the cusp in Quebec of legalizing euthanasia?
We have gone from the goal of improving the quality of [the end of life] to ending life. I don't call that medically assisted suicide, I call it euthanasia.
Do you believe in an afterlife?
I am a spiritual person, but I have very great problems with organized religion. But that is a broader conversation.
How are you going to die?
I have had a permanent tracheostomy for seven years. With each breath I take I realize that I may not be able to take the next one because it takes a remarkably small amount of secretions to block the tube.
I realize that when I become unable to care for myself, the question gets a lot more interesting. What I would never ask, even if the legislation changes, is for a doctor or anybody else to end my life intentionally.
I would far prefer to be asleep consistently until I die, as I described in my paper When Palliative Care Fails to Control Suffering, 20 years ago. The goal isn't to kill, but to improve quality. It is a palliative goal.
Sandra Martin is a Globe and Mail feature writer. This interview has been condensed and edited.
Editor's Note: A Saturday article on palliative care gave an incorrect name for the organization which surveyed Canadians. It is the Canadian Hospice Palliative Care Association.