Slate’s Saletan wrote a blurb yesterday on a man who “woke” from a nineteen-year “coma”, only to disclose he had remained fully aware throughout the duration of his incapacity. On the fray, he posts the following question and observation:
"Question: Should recent awakenings/discoveries of people previously thought to be comatose or vegetative give us pause about pulling the plug or the feeding tube? Any second thoughts about Schiavo?
My inclination: I still haven't seen a case as grim as Schiavo's in which there's been any kind of awakening. And it was horribly clear from scans of her head that she had nothing left to think with. These cases seem very different. So I don't have misgivings about her, but I'm nervous about where, short of that, to draw the line."
I think this issue is more complicated than it seems.
I remember having a long conversation some years ago with a friend of mine, whose specialty is in health psychology. I was very surprised to learn that he was quite opposed to living wills - frankly, I'd assumed his feelings ran counter to that.
One of his main areas of research was examining the adjustment of patients to significant medical illness, however, and he'd been terribly impressed by the variability in adjustment. When looking at adjustment to kidney disease, for example (including both subjective response and more objectively measured adherence to treatment - dietary compliance in particular), he talked about the many people for whom their illness had proved devastating, and the minority who felt their illness had granted them a "new lease on life."
Some of the latter group were going so far as actually increasing activity level, engaging in more recreational activities and more pro-social behavior. This is fairly striking, given that they were all dialysis patients by that point, and very ill (at the time we had this conversation, the medication that enabled dialysis patients to maintain a higher iron level - can't remember the name - hadn't yet been released; as a group, they were feeling sicker than even dialysis patients today).
His point is that we over-estimate our ability to accurately anticipate the impact such events will have on us, in large part because our subjective experience following such events (we were talking about brain injury, etc., as well) is so radically different. When we anticipate catastrophic events, we automatically (and understandably) focus on what we've lost. After experiencing such events, however, you can't say with any degree of certainty that this will be your focus at all.
Which is why I'm still conflicted about Schiavo. For all we know, she was experiencing a life of samadhi (Oliver Sacks did a case study on a Buddhist acolyte with a brain tumor that raises similar issues, I think). How could we definitively know? Even with our sophisticated measurements, our understanding of the subjective experience of what we observe is inherently limited. If she was in such a sublime state, how could she have possibly anticipated such an outcome, prior to the catastrophic events that put her in that state?
I've thought about that conversation with my friend, from time to time, because issues of self-determination and paternalism come up frequently in my life. I've come to the conclusion, for instance, that suicide is inherently irrational (though admittedly varying significantly on this dimension, I think, due to situational issues). I've always found it ironic and telling that the would-be seminal poster-boy for rational suicide - Arthur Koestler (terminal cancer) - also decided it was somehow appropriate to make his exit from life in tandem with his much-younger, healthy, wife.
We should all know by now that our anticipation of horror is magnified by our inability to accurately predict our response; things turn out to be less horrific far more often than what we anticipated far more often than the reverse. This extends beyond anticipated negative responses, though, and extends into our inability to anticipate positive responses. It only highlights the limits of our ability to anticipate even our own reaction and adjustment to dramatically life-altering events.
But I've never been able to quite get passed the fear of becoming the passive recipient of the tender ministrations of people exerting monumental effort to prolong an existence that is hellish in a way I also could never have anticipated. I took a bioethics class in college, and watched that documentary on Dax Cowart. I remain impressed by his persistent insistence that he should've been allowed to die.
I can't help but wonder, however, how often things fall in the other direction: rather more often, I imagine.