Letitia Meynell, writing about her terminally ill mother, suggests that opponents of assisted death must turn their gaze away from abstract issues to the real embodied processes and experiences of dying patients.
In a recent blog post on this site, Dave Langlois considers the case for medical assistance in dying for the terminally ill. Although he defends the practice, he also expresses some misgivings. He fears the consequences that the normalization of assisted dying might have on “our nation’s values and priorities.” In particular, he worries that we might become “a more callous people for whom death seems more mundane.” I think this idea is common, but I also think it’s crazy and I’d like to explain why.
Although my ideas on the subject haven’t changed recently in substance, they have become more urgent. I write this commentary as a person with a terminally ill parent. I write from a place of anger at a legal system that seems to me shockingly callous because it will not allow others (including myself) to legally help my mother with the final process of dying. I balk at the idea that assisted death would make members of our society more callous. Such a view, I suspect, depends on thinking about dying in a sanitized, idealized, or abstract way instead of considering the real embodied processes and experiences that are entailed by getting so very ill that one dies.
Most of us agree that dying is not the worst thing that can happen to a person. That’s why we have a phrase for it – “a fate worse than death.” This is a good thing as we are all going to die and it would be a pretty sad world if the worst thing that could happen to anyone, happened to everyone.
I suppose that there are some who think that there really is no fate worse than death. While this strikes me as displaying an extraordinary lack of imagination, there is, I expect, little I could say to change their minds. I do not see, however, why they should get to impose their value system on my mother for whom death is increasingly desirable and who would be given peace of mind by having the option of assisted death.
Mum is not afraid to die. When she received her terminal diagnosis eight months ago she took it with the attitude “well, that’s that” while I wept beside her. She was diagnosed with inoperable pancreatic cancer and given 6-18 months. After the requisite googling had been done, this prognosis appeared rather optimistic. She decided that she wanted to die in our home in Halifax where she lives with me and my partner. We told her that we would try to make that happen.
My partner took a leave of absence from his job in the US. We got all the documentation in order, went through “the last Christmas” with visits from various family members and old friends, and Mum went back to her home, Calgary, to say her good-byes.
Though Mum has been losing weight since well before her diagnosis, she lost 20 pounds in February, bottoming out at 90 pounds, where she has now stabilized. Eating has been very difficult for her for months, as is elimination, and while the effects have not been too grisly (for the most part), we expect there is worse to come. Recently, bits of her torso have begun to distend, though the rest of her is skin and bones. This may be a sign of fluid building up around her organs. As she said to me last week, “It’s not so much that I’m falling apart. I’m rotting apart.”
Mum began using a walker in February, but by May could only go out in a wheelchair. The pain is ever increasing, but under control. She is often tired and cannot do much, spending most of her time in bed. She has had excellent medical care and is one of the lucky few who receives free (and again excellent) palliative and home support care. So far as I can see, we are incredibly lucky; this is as good as dying with pancreatic cancer gets.
Of course, we don’t really know what’s ahead and whether we’ll be able to keep our commitment to Mum or not. If assisted death were available, there is no doubt that she would be able to die at home. We all hope that she will die quietly in her sleep, but I think that what will likely happen is that her gastrointestinal organs will gradually shut down with various grisly consequences at all attendant orifices, until some organ or other fails sufficiently to kill her.
There may come a time where Mum’s continued life is “a fate worse than death”. This is the time we all dread. At this time, if Mum decides she wants to die her best legal option seems to be to stop eating and starve to death.(At this point, I don’t think that there’s a more direct, reliable means of suicide that she would be capable of administering without assistance.)
If being forced to choose between enduring a fate worse than death or starving oneself to death isn’t callous, I frankly don’t know what is.
Letitia Meynell is Associate Professor in the Department of Philosophy, Dalhousie University.