I see (mostly by way of this) that the Terri Schiavo case is back in the news, thanks to the trial being finished, and the judge having rendered a decision, with implementation of the decision to begin soon-ish. Everything I want to say about Schiavo I’ve already said before, but there’s at least two things that bear repeating.

First of all, the comment in the Shotgun about death by dehydration is curious. Some quick Googling reveals that the quote by Dr. William Burke comes from a book by Wesley J. Smith entitled Forced Exit: The Slippery Slope from Assisted Suicide to Legalized Murder, and you don’t have to spend any sort of quality time with Google or Amazon to figure out what kind of agenda that book is trying to push. (Indeed, most of the examples of Smith’s writing has struck me as deeply, um, hysterical, and his comments about the “death culture” within medicine leave me scratching my head: How come nobody told me about this?) Dr. Burke is a professor of neurology at Saint Louis University School of Medicine where he spends at least a chunk of his time dealing with Alzheimer’s patients, which means he’s probably got at least some familiarity with palliative and end-of-life issues, so I have to accord his perspective at least some respect.

Unfortunately, his position — that dehydration is a “bad death” — doesn’t seem to be supported by the evidence. Ganzini et al, writing in the New England Journal of Medicine, found that it ain’t necessarily so: “Nurses reported that patients chose to stop eating and drinking because they were ready to die, saw continued existence as pointless, and considered their quality of life poor. The survey showed that 85 percent of patients died within 15 days after stopping food and fluids. On a scale from 0 (a very bad death) to 9 (a very good death), the median score for the quality of these deaths, as rated by the nurses, was 8.” I know a lot of nurses, and I don’t think any of them would rate a death that involved seizures, extensive bleeding from mucosal membranes, and repeated vomiting episodes as a “good death.” It seems odd that the only article I’ve been able to find on the topic very nearly directly refutes Dr. Burke’s position (which has bounced around the echo chamber, almost without citation, since this whole mess resurfaced).

There’s an interesting interview with Dr. Ganzini over at Medscape (I’ve linked to Google’s cache, so you don’t have to register) where she talks about some of the meta-issues involved in her 2003 study. One point she made caught my eye:

[Voluntary dehydration] has been going on long before our study, but it hasn’t really been discussed. I hope this study will put it out on the table to increase discussions about it. The healthcare profession has always allowed terminally ill patients to refuse food or fluids for comfort reasons, such as anorexia or nausea, but now we need to talk about it in those patients who do it to hasten death. It needs to bring about a broader discussion of how we can improve palliative care and meet unmet needs.

Yeah. What she said.

Secondly.. well, I hate quoting myself, and think it’s the height of arrogance, but I already said this once and doubt I could ever put it again so well..

Here’s something to think about: If you believe that a competent adult has the right to decide to die, and to refuse particular forms of medical care to further his goal of dying,

.. meaning that if Terri Schiavo could have made this decision for herself (never mind if she would have, let’s work with the decisions she could have made)…

is it appropriate to prevent a decision-maker for that individual from making the same choice for him in the event he is born incompetent or becomes incompetent at a later point in life? Is there a difference? The activists would have you believe that of course there’s a difference, that the difference is critical, but is it really? The argument is framed in the context of promoting equal protection and equal rights, but it’s really just a special pleading: Equal protection and equal rights would necessarily require a proxy be capable of making those choices for an incompetent individual, because otherwise said individual would not be equal. Options that would be open to them were they competent would be closed solely by virtue of their incompetency, and that’s (say it with me) discrimination.

Even if the [activists] are right, and the criteria we use for basing decisions about life and death for incompetent individuals are biased in favor of the able (they frequently use the awful word “ableist”), so what? We’re in this mess because congenitally incompetent individuals do not possess value systems, and so we must find some system into which we can place these individuals; we look, under these circumstances, to society at large. And we ask the questions that we would ask of ourselves were we in the same place; we use “reasonable person” standards of judgment. For those individuals who become incompetent later in life, we use the values of the society to which the individual was raised and lived and is (arguably) still a part of. If you don’t like this, you need to come up with a system that allows for a different values system to be imposed upon the incompetent that do not place them at a disadvantage compared to the rest of us — unless you’re willing to be inconsistent and argue for accomodation and no special treatment when it suits you, and very special treatment when it doesn’t. …

In the absence of clear, compelling evidence to the contrary, one can only attribute to an incompetent person those values that would be possessed by a reasonable member of the society in which that person lives. This does not mean opinion polls. This does not mean “what the church thinks.” This does not mean 95% of what people think it does when they talk about societal values. It also doesn’t mean “what does society think a proxy decision maker should be able to do.” It does mean “what does society think an individual person should be able to do for themselves” — a very different question, and one that has been repeatedly missed.

This point gets missed, repeatedly. The point is free to be argued or rejected, of course, but it is truly aggravating that it isn’t even considered most of the time.

I think a lot of the heat and light over this issue probably has something to do with the reflex revulsion we have to it. But that’s not a good foundation for public policy, and not a good foundation for medical decision-making. We don’t like thinking about end-of-life issues, and although most of us know we’re going to die, I suspect most of us don’t actually believe it, and that drives a lot of our popular thinking about death and dying. (Personally, I’m not afraid of death. I am, however, very afraid of dying. It’s not the same thing.) We’re not doing ourselves any favors by talking about these issues in hyperbolic terms, throwing the “murder” label around, and arguing in favor of a wholly imaginary conspiracy against incompetent individuals and a culture of death.

There are those who think all deliberate death — whether by an individual’s own hand, or by someone else’s, whatever the circumstances — is a sin, immoral, and an unconscionable act. I can accept that. But I don’t believe that’s true by any objective standard, or that it’s useful as a starting point for discussions about death. And I also believe that there is such a thing as a good death, and that it is not only appropriate by required for physicians, nurses, and other health care providers to say, “That’s enough,” and let nature take its course. These choices were easy when people died at age 40 from disease we laugh at today, and were simpler when we didn’t have ICUs and ventilators and invasive feeding tubes, but people don’t die at age 40, and we do have intensivists who can keep shockingly sick people alive far longer than they ever would have lived at any point in the past. Does this constitute progress? I don’t know — it depends on the person and it depends on the disease. And it also depends on the prognosis, and the expected clinical course.

As I’ve said before, I have no real opinion one way or the other about what should happen to Terri Schiavo. It sounds a lot like I’m arguing in favor of discontinuing her feeding and perhaps I am, but that’s not the position I’ve carved out in my head. The positions I’ve taken in all my writing on the subject are generally in opposition to those held by people who want her kept alive, mostly because they’re using arguments that I find truly repugnant (or stupid, or just plain wrong) to justify their own positions. I’m sure that, if I spent enough time, I could construct equally valid criticisms for the other side, but as they say, this is my Web page, and the other side’s arguments don’t piss me off nearly as much. Even that’s saying something — the fact that this case is seen by many as having sides is highly irritating. It’s not about what side you’re on, or what you believe is morally right or wrong, or what you think the role of the state is, or whether you’re a life-loving conservative or a death-worshipping liberal.

It’s about what’s right for one specific person, and who gets to decide what’s right for that person.

And in their haste to score points in the ever-escalating rhetorical war against the demons of The Other Side, it seems as though politically-oriented commentators forget that a lot.