When Living is a Fate Worse Than Death

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.

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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.

chrysanthemumAlthough 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.

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Letitia Meynell is Associate Professor in the Department of Philosophy, Dalhousie University.

3 comments

  1. I support legalizing aid in dying. But Professor Meynell may be giving short shrift to the currently available legal options. Voluntarily stopping eating and drinking is a comfortable and accepted way to hasten death when one finds living intolerable.

    http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1689049
    http://www.ncbi.nlm.nih.gov/pubmed/24779321
    http://medicalfutility.blogspot.com/2014/05/vsed-tedx-video-not-here-by-choice.html

    1. Letitia Meynell · ·

      Well, it may be accepted, but I can tell you now without a shadow of doubt that in my mother’s case it was far from comfortable. This despite continued excellent palliative care that was focused on making her as pain-free and comfortable as possible. It’s nice this method of suicide works for some people but the implication that it’s “comfortable” for all is simply implausible on the face of it. After all, people continue to suffer from the diseases that make their lives intolerable (despite medical care) in the gap between deciding to stop eating and drinking and actually dying from it. In my mother’s case there were three and a half days that she should not have been forced to live. I know this is not a long time as these things go, but it means that her last conscious experiences were ones of anxiety, confusion, nausea and exhaustion.

      Also, I am deeply disturbed by the euphemism “voluntarily stopping eating and drinking,” which doesn’t even include reference to the desired goal, death. We should use clear, descriptive terms: “starving oneself to death,” “suicide through starvation.” The use of various euphemisms around death functions to stop us thinking about the real embodied processes and experiences that are entailed by getting so very ill that one finds continued life intolerable.

  2. Dave Langlois · · Reply

    I am the author of the piece to which Professor Meynell refers. I have great respect for Professor Meynell, and I have tremendous sympathy for Professor Meynell, Professor Meynell’s mother, and Professor Meynell’s entire family.

    I do hope that readers will also take a moment to read my previous blog piece before forming judgments about my views. Because Professor Meynell only quotes a portion of what I wrote, and attributes to me a position which she thinks is “crazy,” it may give an incomplete picture of what I think.

    Professor Meynell says that, in particular, I am worried that the legalization of assisted dying might make us “a more callous people for whom death seems more mundane.” But here is the larger set of sentences from which that phrase was picked:

    “What will we—as a society—be like once this option is entrenched in our medical system, and once generations of people have witnessed friends and loved ones act on this option? How differently will we think of death, life, and ourselves? Will we become a more callous people for whom death seems more mundane, or might we become more compassionate? Will we grow quicker to see death as a solution to hardship? Could life begin to seem less special to us or, very differently, might we develop a greater appreciation for the significance of human dignity?”

    As one can see, I am not focused narrowly on the idea that legalized assisted dying will make us more callous. But I do understand and am willing to contemplate and discuss that possibility with others, just as I understand and contemplate the possibility that it could make us more compassionate and help us to develop a greater appreciation for the significance of human dignity. My overarching point is that we would benefit from a discussion about how making death a subject of human control will shape us, so that we can play an active role in how it shapes us.

    Professor Meynell says at the end of her piece: “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.” I couldn’t agree more. As I said in my piece: “A medical system that ignores the settled and explicit wishes of the ill is a cold one.”

    I very much like Professor Meynell’s blog post, and I don’t think I disagree with anything of substance in it. So I just thought I would pop in and state my agreement.

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