Breaking Silence

I suppose it’s not inappropriate to interrupt the silence with what little I can muster to say about Terri Schiavo. 

I suspect that most people who have gone through anything similar in their own families are reticently aghast at the shrieking from the extremes of both sides.  As a family event, it’s something that (you hope, at least) you go through once, and go through stumbling, agonized, and bewildered.  Making decisions on behalf of a loved family member who may, or may not, be in a persistent vegetative state is not something you can get used to or become skilful at.

The uproar on the “pro-Terri” side seems to have erupted out of a perception that it isn’t clear that she is in a PVS.  The one MRI that has gotten out seems to be equivocal.  There was at least one EEG, which has been called “flat-lined.”  Dr. Alice suggests that a PET scan might be conclusive:  I think that the idea is that the radioactive material is bound to glucose, and the glucose gets taken up rapidly by the brain under the “brain gets fed first” rule.  The scan then shows what areas of the brain are active because more positron decay occurs where there's more glucose use.  It seems that no PET scan has been done, and that’s puzzling. 

The videos that must tug at anyone’s heart, some have explained as reflexive behaviors arising the in the brainstem, which everyone agrees was undamaged.  This is real expert territory:  the brain is layer upon layer of development.  It’s true that a lot of functions are routed through the “most primitive” areas.  Geckos can track moving objects and respond to sounds.  Determining whether Terri’s behaviors are reflexive or volitional is not obvious, and that’s why the unperformed PET scan would be so helpful.  Why one hasn’t been done is unknown, and the subject of conjecture.  It’s also interesting that, anent the videos, we get a bit of the “I don’t let facts get in the way of my opinions,” approach. 

Were I the decision maker a case of this kind, I would certainly want all possible studies, interpreted independently by at least three experienced physicians specializing in this kind of case.  But if there was solid consensus of opinion that the patient was in a PVS, I don’t think I would insist on the artificial prolonging of physical life.  As I’ve tried to hint, it’s a grievous decision to make.  In Terri Schiavo’s case, I don’t think there’s quite as much evidence as I would like.

Because the evidence isn’t crystal clear, we’re left with emotional arguments on secondary issues.  Michael Schiavo unfortunately framed his petition to remove the feeding tube as “this is what Terri would have wanted,” and this seems to have been pretty flimsy.  It’s also natural, maybe even necessary under Florida law (I’ll let lawyers be experts on law, but not on neurology).  Some are put off by his behavior, where appearances are against him.  One should be careful there:  however he’s played it, surely Michael Schiavo was dealt a very difficult hand from the beginning of his marriage.  The bulimia that affected Terri is also anguishing to family members as it’s slowly discovered, and in the years that followed Terri’s heart attack, he had unusually heavy burdens for a quite young man.  There’s plenty to question about his actions, but the situation is obscure, like everything else in this case.

It’s also obvious that as the debate has spread, other issues have become attached to Terri’s case, improperly, I think.  This isn’t a states rights issue, not a conservative-liberal issue, not a precedent, not a culture of life vs. culture of death fulcrum.  This is a difficult, cloudy, very nasty family fight that has become public. People who “support” the removal of the feeding tube (or would, if the evidence were clearer) are not vicious thugs, not necessarily, anyway.  Those who want to maintain Terri are not screwball burn-the-heretic fundies.  Other, larger, cultural debates have crystallized around this unfortunate woman, to the point that we hear the shouting and name calling, but not much about her.

Why, why, hasn’t anyone with the authority to do so ordered a PET scan?

Addendum:  This report seems to confirm that the diagnosis of PVS is less certain that it should be.  As I've said, the decision to remove support should become an issue only when the diagnosis is uncontroverted, and that's not where we are.  It looks, alas, that early in the court case both sides agreed that Terri was in a PVS, and that the court has not allowed that question to be revisited.