Ninety-four-year-old Marion Penner, who lives with a serious heart condition and is confined to a hospital bed after breaking her pelvis six months ago, is ready to die. She, supported by her family, wants a medically assisted death, for which she has been unable to receive approval. Instead, to hasten her death, she has stopped taking her heart medication and antibiotics.
There are two reasons why Marion has been forced to take matters into her own hands. First, her health conditions are chronic and her death is not imminent, which means she needs two professionals rather than one to approve her for MAID. Second, she lives in Manitoba, which denies assisted dying at five times the national rate.
According to Marion’s daughter, Valerie, the family is all comfortable with MAID, but finding a doctor to even provide information to Marion has proven challenging.
“A couple of the physicians that we had at Bethesda [Regional Health Centre in Steinbach], they made it clear that they were not comfortable with MAID.”
Cruelty and trauma
All Marion wants is “a smooth, easy transition” into death. Unfortunately, Manitoba’s Medical Assistance in Dying (Protection for Health Professionals and Others) Act, says that doctors are not required to provide information to patients who ask about MAID. While all provinces and at least one territory have similar legislation, Manitoba is the province with the fewest MAID assessors and providers other than Prince Edward Island (which has a population one-tenth that of Manitoba). Of the mere 20 health care providers who provide MAID-related services, just three work outside Winnipeg.
What this means for Marion is that she spends her days and nights in a hospital that is 55 kilometres away from her home. She can’t get out of bed because she doesn’t have a wheelchair. She has almost no visitors, as the people she knows don’t drive. She can’t play her beloved piano.
Planning ahead
My mother died in April after disappearing into dementia many years before. We knew she would have wanted a medically assisted death, because she had told us so in unequivocal terms many times. I considered her instruction: “Just shoot me if I get like that,” made on numerous occasions when she was fully competent, to be a pretty clear indication of what she wanted, and we couldn’t give that to her.
Instead, we grieved her living death over and over, as she slowly lost her memory, her words, her recognition of us, her ability to enjoy the many activities that had made her one of the most energetic and busy older people any of us had ever known; really, to engage in life in any meaningful way. Her physical death was, in many ways, a mere formality.
People who would like to have a medically assisted death should not be denied because they lose capacity after declaring their wishes. I don’t want my final years or death to mirror my mother’s. But the existing law would leave me in just that situation should I lose my cognitive abilities.
For me to be able to access MAID once I lose my capacity to consent, the federal legislation would have to expand to permit the use of what are often called advance directives. In other words, the law would need to allow me to have MAID based on a directive I write now, while I am competent, even if later I lose that capacity.
This possibility has been up for discussion off and on ever since MAID was first introduced in Canada. However, no progress has been made, except in Quebec, which allows the use of advance directives. The Quebec law is being challenged, and I fear that any positive changes elsewhere in Canada won’t come in my lifetime.
What about mental illness?
Up for debate right now is the question of whether MAID should be available to people whose sole medical condition is mental illness. Currently, it is not. The parliamentary committee with the job of studying this question and proposing recommendations is due to provide its report this month.
“It’s been a frustrating experience, because it has been particularly one-sided in the perspectives that have been shared, and has been far from being sort of balanced or comprehensive.”
Both of the committee’s co-chairs have publicly opposed expanding MAID, which doesn’t strike me as a particularly neutral starting point. A number of potential witnesses who have lived experiences of debilitating mental illness or who are family members of people in that situation and who support the expansion have not been invited to present to the committee. The witness lists show a clear preference for medical professionals who oppose MAID either generally or specifically in situations of mental illness.
One witness, a family physician who is a former member of Ontario’s Medical Assistance in Dying Review Committee, had this to say to the committee:
“I’m very pleased that the federal government is finally starting to recognize that there are major safety issues with MAID.”
While Parliament does not have to follow the committee’s recommendations, the Prime Minister seems inclined to do just that, despite the fact that more than one case claiming that not allowing MAID for people with mental illness is a violation of their Charter rights is making its way through the courts.
What makes a good death is different for each of us. This description, written by a long-time nurse who was present for the deaths of many patients, speaks to much of what matters to me:
“My belief is that a ‘good death’ is one that meets the wishes of the dying and the needs of the living. . . .”
Expanding MAID to include situations where the person has a mental illness or has signed an advance directive would be a big step towards allowing more of us to have that kind of a good death.