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Assisted suicide: agency for all?

June 10, 2011

Another mushrooming comment brought over to a post of its own. I’d been meaning to write something about this since reading Rachel Cohen-Rottenberg’s post mentioned, but just haven’t had the energy.

This one was prompted by my using a Terry Pratchett quote for a post title, with his having started campaigning for assisted suicide to be legal in the UK since developing early-onset Alzheimer’s. Someone commented on the irony of the “I aten’t dead” title in this context.

This is a subject I’m deeply conflicted about, given the difference between how things should work and how they too frequently really play out–especially once the medical system and disablist attitudes get involved.

I can’t say that much about Pratchett’s own circumstances, since I am obviously not him. But I do have to question the ideas about dignity and quality of life that make people want to die when they have dementia without, say, serious pain. I’m not dismissing mental and emotional suffering as somehow less important than more clearly physical suffering–anybody who’s been reading a while may have noticed that I think Descartes and the philosophical traditions that went into his work have a lot to answer for!–but I have to wonder where this suffering is actually coming from: the illness itself, or being surrounded by dodgy attitudes. (With another obligatory link back to Culture, how we view human difference, and abuse.)

The relevant bit of that comment:

Yeah. I can certainly understand why, in his situation, he’s become more convinced that people should have access to legal assisted suicide. Which, from my own experience, I have trouble not agreeing with–talk about interference with self-determination! But, there’s all the disablism, power differentials prone to abuse, possibly cost-saving motivations, etc. Rachel Cohen-Rottenberg described those well in Why I Oppose the Vermont “Death with Dignity” Bill. Basically, interfering with people in either way sucks, and should not happen. But it does.

[ETA: Obviously, in no case, should other people be deciding for anyone else whether they should continue to live, or whether their life is worth living. No. /ETA]

If people were not under pressure (including from lousy ideas about “dignity” and being a burden, and other people deciding what an acceptable quality of life is)–and were sure of getting decent palliative care, with adequate pain relief and the like–I would not have a problem with it. Even so, if you’re in intractable severe pain to the point that the hospice people start out suspecting you’re just not getting the morphine–and you’re having mini-strokes from the stress (start yelling and screaming and writhing from pain, have a stroke 😐 ) and begging people to kill you–it should be an option anyway, IMO. It does happen, especially if you’re prone to idiosyncratic medication reactions. Actually, after seeing what can happen when the pain relief available barely works, I made Nigel promise to take me to the Netherlands or something if I ever got in the kind of shape my mother was in and was no longer able to take care of things myself.

[ETA: I reworked this paragraph some here for clarity.] That kind of situation is what comes to mind when I think about dying with dignity. Nobody should have to live or die like that, reduced to begging for the only relief available and unable to get it–especially coming from a background where there is a lot of emphasis placed on maintaining dignity and composure, and being in a state that you have no reasonable choice but to scream and beg is seen as seriously undignified. Besides the levels of physical suffering required to make the begging necessary, when you have been taught to express pain differently, there is the added injured dignity factor there. It distresses me that this is not what a lot of other people mean when they use the term.

Yeah, that probably needed a post of its own instead of clunking up comments, but … 😉

And here it is, mostly because it’s an important topic on its own. Also very relevant here: Amanda’s Mini-feline-ethics post: the power of life and death. Nobody should have that kind of power over other humans. But, again, they do. And I wish I knew how to change this.

There were a lot of lousy attitudes, mismanagement, mistreatment, and IMO criminal-level malpractice over many years leading up to my mother’s being left in that situation with her late-diagnosed terminal cancer. Frankly, in that case, the continuing know-better attitudes and legal approach pissed me off worse. It struck me as a continuation of the same inequality-based clusterfuck, with the same misogynist/racist/classist/etc. people and system getting to decide what was good for other people. Just as bad to deny someone the option of dying when that is the only relief available and they are very clear about wanting that, as to force/coerce/otherwise influence them to die. Their opinion on the matter is given very little weight in either case. It’s their life. And, again, nobody should have that level of power over other people. While this kind of thing doesn’t happen in every case, it can be a real problem for people who are already marginalized–and thus also more prone to all kinds of abuse and, erm, marginalization. Like I say, complicated.

From my perspective, the train of thought that led to my grandfather’s being denied anything resembling adequate pain relief on the grounds that he might get addicted while dying of cancer, has too much in common with blanket assertions that physician-assisted suicide should not be legal under any circumstances because there is a stonkingly huge potential for abuse and denial of agency. Real people who are suffering should be the main priority here. And middle ground–with agency for all!–does exist. In a lot of politicized debates, agency sure does fall prey to manufactured, false scarcity.

Lots of systemic change required, all around. Therein lies the rub.

That touches on what bugs me about the whole debate, really: there frequently seems to be more interest in ideology than anything else. When something gets this politicized, that’s pretty much bound to happen. Widgets, always the widgets substituting for any kind of balance or pragmatism. 😦

I couldn’t find the post I was looking for on the new WordPress Ballastexistenz site; the only cached version I could find requires scrolling to Politics, Ethics, and Mental Widgets. I meant just to link to the post, but am quoting because it’s just that relevant (to so many things, actually):

This is not easy in a world that mostly equates politics and ethics with vast, overarching ideologies, all neatly connected like a giant sculpture in the sky, and no piece possible to be moved because it would bring the rest of the structure down on top of it. Of course, this is also a world that also equates politics with greed, anger, and corruption, and in which many people who do engage in politics all the time (trying to understand various power structures and social systems and how to do something about the bad parts) actually deny that they are political at all because they view politics as something ugly and dirty, something about politicians, rather than about everyday people. So they do politics all the time while denying it to their last breath.

My versions of politics and ethics have to do with taking some really basic, simple values — such as love rather than disconnection — and applying them to situations that I encounter in the real world. The strange thing is, this tends to yield what look like views a lot more complex than you’ll generally see coming out of a complicated string of mental widgets. That’s because of the “real world” part of it — the real world is actually more complicated than any mental widget could ever be, and applying a simple principle or two to the real world yields results a lot more complex-looking (when taken as a whole) than erasing the real world in favor of a complicated (but not as complicated as the real world) mental widget.

But given the circles I tend to run in, I seem to bash into complicated, rigidly-held, abstract mental widgets all the time.

That’s also why I keep not writing much about such politicized subjects–and rarely engage when they come up elsewhere–because I just don’t feel up to dealing with the tortured widget-based discussions which tend to result. And I fully expect, based on experience, to get people who rely more heavily on the widgets basically putting words in my mouth because they assume that I am also relying on familiar widgets. (When what I am doing is, indeed, based on applying principles such as “interfering with other people’s lives against their will is wrong, as is trying to impose your will over theirs and pretend it’s their idea” and hopefully some critical thinking.) Don’t need the aggro. Which does apply to comments here, BTW, at the risk of sounding harsh.

ETA: I also think that a frequently unrecognized and unacknowledged part of this whole debate is cultural baggage around the whole idea of suicide and whether this is ever appropriate. Christian hegemony, anyone? It has not been that long a lot of places since unassisted suicide and attempts were felonies, and that will still get you locked up for forced, legally mandated psychiatric treatment. I think a lot of people have absorbed a certain set of attitudes about when/if suicide might be appropriate, to the point that many or even most don’t even think about what’s influencing their attitudes–much less how appropriate it might be to apply these standards to everyone. Widgets, indeed. 😐

4 Comments leave one →
  1. June 10, 2011 4:05 pm

    If agency for all means a basically pressure-free existence (and I’m inclined to agree that it does) then a whole lot of things about life need a major overhaul. Maybe not overhaul to the point of erasing the real world in favor of a complicated mental widget, but overhaul nevertheless. The cultural pressure not to be a burden (more often stated as an affirmative duty to carry one’s weight) is part of a much larger package deal that includes a decidedly narrow definition of coercion—ideological capitalism’s so-called “non-aggression principle,” and their tired slogan “nobody’s holding a gun to your head.” Vermont, to its credit, is ahead of the curve in de-privileging health care in general. If it is also considering assisted suicide at this time (if so, this is the first I heard of it) that would be, at best, extraordinarily bad timing (in my own humble opinion), as the alleged linkage of these issues is used as powerful ammunition indeed in the hands of those who posit end-of-life cheapskatery as part of the means by which more widespread access to health care is paid for, with the predictable accompanying Euro-bashing.

    • urocyon permalink
      June 10, 2011 6:07 pm

      Agreed on pretty much all points there.

      a whole lot of things about life need a major overhaul

      Indeed. 😦 That would be the problem.

      I don’t pretend to have much in the way of answers, especially since so many people have been trained not to do something like John Mohawk’s version of progressive pragmatism. In a nutshell:

      envisioning a desirable outcome and then negotiating the steps to go from here to the outcome that you want…
      Progressive pragmatism seeks ends that are universal and that have the quality of win-win negotiations. Both idealism–the idea that God is on someone’s side–and vilification–the idea that one side is evil or fundamentally in the wrong–are barred from this process. Instead, this process lays out desirable outcomes that all sides can agree upon, and these must be adhered to through a set of protocols, because it is not possible to create peace by force and because peace requires rules that both sides embrace and honor.

      (Applies to any kind of conflict resolution, really.) Until and unless people are actually interested in taking that kind of approach, I don’t know. And I have no idea how you’d convince people who are heavily invested in the idea of Being Right to even try that.

      Yep, frustrated anarchist here. *wry smile*

  2. June 10, 2011 7:23 pm

    I don’t like “right to die” being presented as an alternative to “fixing society so that there aren’t skeevy attitudes about certain conditions and illnesses that make people want to die to escape them.” But I really want the right to decide when to die. And making it illegal to choose when to die doesn’t fix society’s attitudes.

    I recently watched my mother die of Alzheimers. She had high quality care. The horrible thing for me to watch wasn’t that she couldn’t think as well as she used to. The horrible thing was that she couldn’t stay oriented about where she was and what was going on, and as a result, she was terrified a great deal of the time.

  3. June 11, 2011 12:28 am

    Yeah, I’d like people to be able to choose when and how they die, but I also think it would be a terrible thing for euthanasia to become legal/mainstream with society being as crappy as it is now! It seems like, if society were to be totally unchanged from how it is now, except that people had “the right to die,” we’d have untold numbers of old and disabled people quietly murdered every day.

    To use Stef’s phrasing, I don’t think “right to die” can exist without “fixing society so that there aren’t skeevy attitudes about certain conditions and illnesses that make people want to die to escape them.” (Or skeevy attitudes that make people not value certain people’s lives, and make life-and-death decisions *for* them rather than try to find out what they want).

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