Friday, April 01, 2005

The prolonged and all-too-public death of Terri Schiavo has supposedly brought about a boom in living wills. Yes, we should all make them. No, most of us won't get around to it until it's too late. The Schiavo case, at any rate, was more about a public digging in of heels than about the function of the legal system, or about any of the widely spewed claptrap regarding a "culture of life" and its supposed alternatives. At this point, though her husband and parents are supposedly bereaved and have every right to grieve, can anyone sympathize with any of the three of them?

The case has some resonance for me; as some people know from my comments on a friend's blog, my father's death in 1996 caused considerable family turmoil. Briefly: At the time that my father (then in his eighties) was diagnosed with a terminal illness, he made it clear that he didn't want to go through traumatic and futile treatment. He'd been through it all before, in a situation that was not futile. He knew exactly what it entailed. He knew it would not work this time. By the time he was close to death, he had little mental clarity left. Let's say that some of us in the extended family had accepted the situation, while others hadn't. My father had home hospice care during the last months of his life, and was treated only for pain rather than for the underlying disease. This was a relief to not only my father, but to most members of the family. Others were horrified. Nothing in their experience had really prepared any of us, of course, for how things played out.

All of us who survived him get along very well now, and as far as I can tell, we all still love one another. I can't imagine what would have happened to those relationships if we'd fought over this in court. It certainly wouldn't have helped my father one fraction of a fragment of a whit of an iota.

I don't know whether I'll make a living will. I'd like to think that I'll do it, but right now, like most of us, I'm having difficulty finding time to dash out to the bookstore at lunch, never mind draw up properly witnessed legal and medical documents regarding matters of life and death. Maybe it's denial, or maybe it's just inconvenience, but that's how things stand for me and some huge percentage of the rest of the species. So at this point I'll do the next best thing. A lot of my friends read this site. So, I'll make my wishes explicit on my blog.

People in my family tend to live a long time. My mother turned 86 yesterday, and is in better than decent health. I'm finally really enjoying myself as I approach fifty. I hope to live for a long time. If I develop a serious health problem and have any chance of recovery, I'll probably jump at that chance. But, I do not wish to be tortured, displayed in public, or made an example of if I do not have that chance. I especially do not want to be made a public spectacle if I become incapacitated to the point of brain death or a vegetative state.

If I am terminally ill, I want the option of being treated aggressively only for pain and anxiety, even if such treatment leaves me unconscious or "hastens" my death. If I can't communicate my wishes under those circumstances, I want my doctors to treat me aggressively only for pain and anxiety, as the presumed default. (Funny how some of the people who think that allowing natural death while treating pain is "playing God" in an unethical fashion. Think about that the next time you pop an aspirin, or let the ER doctors put a cast on your broken leg. After all, maybe God wants you to have that headache today, or to limp painfully for the rest of your life instead of recovering fully from your injury.)

If I experience brain death, I want life support withdrawn immediately. None of this "keep her alive a few more days for the family" stuff. What's the point?

If I am in a persistent vegetative state and more than one physician states that I have no chance for recovery, I want life support withdrawn immediately. If anyone is concerned that I might be in pain, then pain medication is fine. That's it. Nothing else. Nada.

On the other hand, if I'm ninety-five years old, have a life-threatening illness with little or no chance of recovery, and still ask my physician in a clear and unmistakable manner to treat my underlying condition aggressively, then I want my condition treated aggressively. Period.

What about these basic conditions of human dignity are so hard to understand? Up front, I'm a big booster of medical science. No one wants to go back to the old days when people died of pneumonia or heart attacks while the doctor held their hands. No one wants to see children die of diphtheria or measles, to treat a blind or paralyzed friend as if he no longer matters, or to lose a beloved seventy-year-old grandmother to a stroke when the technology exists to help her get well. On the other hand, if we develop the technology to keep human brains "alive", at some cellular or tissue level, in culture jars for centuries, are some people going to argue that we have the moral responsibility to do such a thing whenever possible?

The story of Terri Schiavo is a sad one, for reasons having to do with her youth, the bullheadedness of her parents and husband, the shock value of her physical deterioration shown close-up in print and on the screen, and the potential lethality of eating disorders in a culture that so torments women -- and, increasingly, men too -- over matters of body image. Her death, like all of ours, is ultimately a done deal. The only consolation is that she was probably aware of none of the long positive feedback loop of misery that her relatives and assorted hangers-on inflicted on one another. I would wish such things on no one, with or without a living will.


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