This Terri Schiavo brouhaha -- absolute insanity. Politicians cackling like a bunch of crazy chickens. The press screeching like a Monty Python choir. Congressmen slip-sliding around in the grease of their own unctiousness. Saturday Night Live couldn't do it better. But it is a sad story. It should be a private story.
The Terri Schiavo affair is, in the end, a troubled family's storm, the endless crashing thunder of a deeply troubled family. The parents, blinded, are incapable of taking "no" for an answer. As in a bitter divorce where one party, enraged, rushes from one lawyer to the next to the next to the next in the hope of getting the impossible, these parents weep and wail and beseech in hope, maybe, of sating their neediness for --what? revenge? love? meaning? Or maybe to save themselves from falling into an abyss -- shattering a brittle reality. So this family goes from lawyer to lawyer, doctor to doctor, court to court, reporter to reporter, to politician after politician. The madness grows helter-skelter, the loonies of our land feeding on it for attention and profit.
Frequently enough in this country, families come to the private decision to disconnect a family member, beloved or not, from life support. Sometimes it is ventilator, sometimes a feeding tube, sometimes both. These situations almost always cause anguish: there is no easy way out. This is, after all, life and death at its starkest. But most cases don't even make the local news. The last thing most families want is to find themselves in the glare of the spotlight as they deal with their grief, their uncertainty, their ambivalence, their guilt, their secret wishes, their fears and longings.
In my experience, the noisier, more hysterical, more agonized, more public the family, the more likely they are to live in a deeply troubled private world. Often they cannot look inside themselves. I suspect that this frantic grasping to keep Terri Schiavo alive has more to do with whether or not her parents can face her death than it does with what Terri might or might not want. What's going on in her parents' hearts? Maybe she has, in her permanent vegetative state, become a fantasy daughter, the perfect child. Maybe they can act out an idyllic family life they never had. Maybe they think they can make up for her past pain. Or maybe they feel, in their secret selves, that if Terri dies their lives will have no meaning. Maybe Terri's dying will mean the parents have to finally let Michael have his way. Maybe he was in fact abusive: now it seems to them he is murdering her. Maybe all the attention comforts them, like an audience comforts a lonely star. Who knows? She was an unhappy, chubby child and apparently a not-too-happy adult. The irony of course in all of this is that eating issues continue to dominate what's left of her life.
This is all guessing, of course. But I wonder if they might find a surprising bit of strength if they tried to put themselves in Terri's shoes, as Terri's shoes are today.
They might ask is it likely that the Terri they knew wouldn't mind being totally at the mercy of others for everything?
That she would not mind having no choice over who visited her and who didn't, who touched her, who cleaned her, who turned her, who changed her clothes? Who cleaned her feeding tube, the sore where it's inserted?
That she would be happy having her mother speak for her, say what she cared about, what she liked, whether she was smiling or not, that she always loved it when they played John Denver music for her? What if she's sick of John Denver?
That she would like to spend twenty three out of twenty four hours a day alone and immobile, unable to choose for herself whether to have the blinds up or down? The sheets tucked under her chin or pulled all the way off? Her door open or shut?
That she would not mind that she could never decide what to eat, what music to listen to? Whether to listen to it? That she wouldn't mind that she could never eat what she chose or go out to eat it?
That she didn't mind that she could express no opinions on anything...ever? That maybe people were attributing a smile to her when in fact she was crying inside? That maybe she didn't like her mother reaching under her gown to straighten it? That maybe she wanted more privacy?
That she wouldn't mind never feeling the wind on her face, never sticking her toes in the sand at the beach, never confiding to her best friend or even her hairdresser?
What would she say about the money that has been spent on courts, on lawyers, on doctors, on the press, for the time of our august congressmen? Our President? If someone told her how much it all added up to it, how would she choose to spend it instead, if she could?
What if she wanted real peace?
These are questions the parents should ask themselves.
Terri's may have been a troubled marriage. Her husband may have been a jerk. Her parents may have been jerks. Terri may have been anorexic. She may or may not have said she never wanted life support, or maybe she said both. That was then, this is now.
All we can do is to try to put ourselves in her shoes, not put her in ours. If, on balance, with honest hearts, her parents can say she is content with the life she has now, that learning to swallow on her own would really fulfill her, that she is fighting to stay alive,, then they should fight to have her live. If they know in their heart of hearts that she would like to be set free, then, if they can shut out the noisy sycophants and parasitic press and hangers on and worst of all the self-righteous religious folks who would rather scream about right-to-life than admit this isn't a natural life, they can, with God's help, let her go. If they cannot decide themselves, as has been suggested below (Peter A. Clark, S.J.) they can in all good conscience let go of the decision. Her husband has the right to make it. If they really fear his motives, they can hand the decision not to her husband but to a guardian ad litem, someone truly outside this ugly, brutal storm, someone bound to make an ethical and compassionate decision.
NOTE: A good article, "Self-Determination and Selfhood" by Peter Suber of Earlham College can be found at www.earlham.edu/~peters/writing/emerson.htm
Peter A. Clark, S.J., a Catholic and an expert on medical ethics including end of life issues comments here: http://www.ascribe.org/cgi-bin/spew4th.pl?ascribeid=20031103.08
ABOUT issues of treating people in a persistent vegetative state:
Hallenbeck, J.ñ WSeissman, D., Fast Fact and Concept #10: Tube Feed or Not Tube Feed?
