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Thursday, March 31, 2005

More food for thought on the Terri Shiavo case.

I found this discussion of the lengths to which Terri Schiavo's parents were prepared to go a bit troublesome.

For a long time, I have thought there was a very important insight in Peter Singer's book Rethinking Life and Death as to why, sometimes, it makes sense to prolong the life of a person who cannot have any awareness of her life (and so, can experience neither pleasure nor pain from having the life prolonged), and sometimes, it does not. The key issue, which most people lose sight of in these debates, is that people are not fully compartmentalized entities -- what makes our lives valuable includes our relations to other people. We exist within social webs. And the other people in our social webs can make our lives better even in cases where they may not have self-awareness and so, may not be getting much value out of their own lives. (It's possible I'm putting this insight into Singer's mouth -- in my quick flip through the book after the last time I read it, I haven't located a killer quote that captures this insight. But I know I became aware of this insight when reading his book, and if it's my insight, Peter Singer brought me to it.) Thus, it is not the case (as is sometimes claimed) that Singer argues that the lives of the severely incapacitated or the very young are without value. It's just that the value of their lives seems to have quite a lot to do with our relationships to these individuals.

But along come Terri Schiavo's parents. According to the report of Terri's Guardian Ad Litem, Jay Wolfson, court testimony in 2000 established that

despite the sad and undesirable condition of Theresa, the parents still derived joy from having her alive, even if Theresa might not be at all aware of her environment given the persistent vegetative state. Within the testimony, as part of the hypotheticals presented, Schindler family members stated that even if Theresa had told them of her intention to have artificial nutrition withdrawn, they would not do it.

The relationships in this particular social web scare me. Arguably, the parents found value in maintaining Terri's life. They admitted that this was value coming to them, not necessarily to their daughter. But, in nearly the same breath, they indicate a certain kind of disregard for their daughter's wishes and interests. In some sense, they were arguing to maintain a social relationship (by maintaining the life of their daughter) even if it were the case that Terri herself would choose, if she could, to opt out of this relationship. "Parasitic" may be too strong a word to describe the psychological state of the parents here, but ... do the words, "Mom and Dad, stop trying to live my life!" mean anything here?

Saturday, March 26, 2005

Hobgoblins.

A foolish consistency is the hobgoblin of little minds. -- Ralph Waldo Emerson

I suppose the nature of the Web makes it inevitable. You start in familiar territory. You follow a link, and from there follow another link, and from there to the next, and the you go just one link further ... and suddenly you're in the belly of the beast. Someone you've never heard of is on a rant about "those people" and you realize that in all likelihood you are one of those people. At least, the ranter you have never met will automatically identify you as one of those people. And even though you've never met this person, and probably never will, you suddenly feel the need to explain yourself, to demonstrate that the rant isn't on target.

I'm going to explain myself here, even though the chances of anyone whose rant actually sparked the explanation actually reading the explanation are vanishingly small.

Personally, if I were in Terri Schiavo's position, I would not want to be kept alive. I would want my parents to respect my husband's efforts to look out for my interests. I would want them to try to make their peace with the fact that the part of me that was important -- to me, and I would hope, to them -- was gone. I would want them to figure out how to keep my memory alive in their lives, but I'd want them to let go of the bodily shell.

Does this mean I want the power to "play God" and "kill Terri Schiavo"? No. Indeed, it feels like the combination of modern medical technology and political grandstanding is working the "playing God" angle. We have the technology to keep the bodily shell alive, but that doesn't necessarily mean it's a good thing to do so. (Shouldn't people of faith, who think it's the next life that really matters, be concerned about our ability to "trap" people in this life for over long?)

Is there a basic inconsistency between supporting efforts to let Terri Schiavo go and supporting stem-cell research to explore treatment for Parkinson's disease, Alzheimer's disease, and other illnesses? There might be if stem-cell research were aimed at saving people in Terri Schiavo's condition. But it's not. Rather, I think the hope is that medical application of stem-cell research might help people avoid getting to such desperate states.

Maybe the alleged inconsistency is something like this: Terri Schiavo's feeding tube is an unnatural intervention extending her life; it's bad because it's unnatural. But stem-cell treatments would be an unnatural intervention to extend other people's lives, so we ought to be against them as well. Of course, this would depend on some hard line between the natural and the unnatural that has some moral relevance, and it's just not clear that there is any such line. And I don't know anyone whose argument depends on there being such a line. We watch what we eat. We get vaccinations. We exercise. We cross at the crosswalk. How natural is any of this? Why would it matter anymore?

Another version of the alleged inconsistency: We need stem-cell research because, potentially, it will work medical miracles for people who are otherwise doomed to horrible suffering and agonizing death. But, Terri Schiavo is in a state where she is beyond the reach of miracles, so there's no point in keeping her around just in case. The inconsistency, I guess, is predicting miracles for one set of patients but not another. But here, I think there's a conflating of "medical miracles" and divine miracles. If divine miracles are going to happen, can humans thwart them? If so, why wouldn't we think that medical miracles might also be thwarting the will of the divine?

(For the record, I'm rather less sanguine about stem-cell research than a lot of people. I think the potential benefits have been oversold, as often happens when scientists are looking for funding.)

My worry about the whole shouting match is the idea that consistency depends on drawing sharp lines that are supposed to fit every situation. My experience of life is that these sharp lines really don't serve us very well (and it's not like they're pre-drawn for us to read unambiguously off the world). Life is complicated. Humans have to make tough choices. And, from my understanding of theology, that's part of the deal. Humans have rational powers because they need them. Moral agency often involves navigating through complex territory and making the best choices you can. Sometimes this involves reflecting on what is really valuable. And maybe sometimes the real value is not from achieving a particular outcome so much as coming to a better understanding of what makes our lives good.

I'm sad about polarization, and our inability to really engage each other on the hard stuff. Maybe that's because I don't have a political base I need to pander to.

Tuesday, March 22, 2005

Life as a political football

I suppose I have no choice but to blog about the case of Terri Schiavo. It has managed to squeeze even a high-body count school shooting nearly out of the headlines (although I suspect there's some interesting link between these two phenomena in early 21st century American culture ...).

Even just looking at what NPR has posted today is pretty overwhelming. (I must say, however, this commentary makes me love Daniel Schorr more than I did already.)

Certainly this is a very sad situation: Terri Schiavo has been in what doctors have identified as a persistent vegetative state for 15 years. Her husband says that Terri told him (after family funerals of relatives who had been kept alive through extraordinary medical measures) that she never wanted to be kept alive in that condition. Her parents hold out hope that the doctors are wrong and she'll come out of it. Given my dad's medical travails, I'm not unsympathetic to her parents' position ... but 15 years is an awfully long time. And ultimately, I think their position ignores the possibility that some things may be worse for us than death.

Let's say Terri held a firm conviction that being kept alive indefinitely in a permanent vegetative state was a bad thing -- no help to the person being kept alive, a source of anguish for that person's loved ones, a waste of resources on a futile end. In this case, her parents' actions (and the intervention of the U.S. House of Representatives) actually go against Terri's values. Arguably, such actions then hurt her more than they help her.

(How could it hurt her to keep her alive? If a permanent vegetative state means that she's not conscious of any pain, neither being kept alive nor being allowed to die could literally hurt her. On the other hand, if, as a person, she was serious about her values and took them as being at least partly definitive of the person she was, then anything that acted against these values would be acting against her.)

It's possible, of course, that Terri might (given the chance) have changed her mind and said, "Give me the best medical treatment money can buy and don't give up no matter how grim it seems." Even in this instance, it seems there would be a point after which it would be appropriate to listen to the medical judgment that there's nothing more to do. Otherwise, modern medicine may find itself saddled with the obligation to keep all of us alive indefinitely, and, for that matter, to come up with the technology to make us immortal.

Whenever I contemplate whether immortality would be good for me, I start by assuming I'd be conscious. I know of very few people who would opt for immortality in a permanent vegetative state.

Indeed, the issue at hand is not shutting off a respirator but withdrawing a feeding tube. It's been pointed out that death by withdrawal of nutrition and hydration can take a while. (Is it painful? Maybe to the family, but not to Terri if she's not conscious of pain. Of course, a lethal dose of morphine might ease the exit, but that's not part of the life-is-more-important-than-anything-else agenda.) Some have argued that society has a fundamental responsibility to provide Terri with nutrition and hydration (since she is unable to provide them for herself). Yet wouldn't this obligate society to provide nutrition and hydration for everyone unable to secure them himself or herself, whether for physical or economic reasons? It's not like people don't starve in these parts.

If Terri Schiavo were to come out of the persistent vegetative state, I wonder what kind of life she would have -- dealing with parents who made disagreement with her husband so nasty and who showed so little regard for their adult daughter's stated position, living in a society where people cared about her as an object of political discourse but probably care very little about her actual well-being (and certainly don't act consistently to treat all the living with such "high regard". It might be enough to make her want to go back down.

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