This private family decision is most often made, not by families and doctors and spiritual advisors, but by insurance companies and hospital accounting offices.
This is the place where I am supposed to insert the obligatory exhortation to get your Living Will, hot, fresh, new, improved!
But I am going to make all the lawyers mad and tell you an unpopular truth.
If you are in the US, unless you are very wealthy, or have an exceptionally good and ridiculously expensive health insurance contract, or a cluster of fans willing to pass the plate and dig deep for you, it is unlikely that your family members will find themselves struggling over the heart-wrenching question of how long you should be tube fed.
The question before the courts was a simple one to which there were no easy answers: What would Terri Schiavo want? Would she want to continue living indefinitely as she was, or would she want to die?
At the time of her accident, Terri was a 20 something, from all accounts an ordinary young woman. With all due respect to those who loved her, who have praised her charm, her friendly nature, and all her excellent qualities, the only truly remarkable thing about her life is that she apparently suffered from bulimia, which in the American culture, is not really that remarkable.
Almost from birth, young girls are conditioned to base their self-esteem on their physical appearance, specifically how closely they are able to conform to the popular western standard of beauty, which is for the most part, tall, thin, and blonde.
Terri was a very pretty woman, but she would never be fashion-model tall, thanks to her Mediterranean heritage, she looked funny as a bottle blonde, and was a naturally plump woman who in order to be thin, had to throw up most of what she ate.
While many women live longer with bulimia than Terri did, none of them enjoy good health, for obvious reasons. Michael Schiavo has said that he and Terri were attempting to conceive a child, and one of the bad things bulimia can do to a woman’s body is interfere with the normal function of her reproductive system.
It appears that Terri sought medical help regarding her failure to conceive a child, and the doctors did not diagnose her bulimia, after her collapse, her husband sued the doctors, and received a settlement.
By all accounts, it was after the settlement that tensions between Michael and Terri’s parents emerged. According to the report of the Guardian ad litem appointed by the courts, it was then that Michael’s view toward Terri’s condition changed.
Was all this because both sides wanted the money? We may never know, and it will never be our business. That was not the question before the courts, though it is worth noting that the judge did appoint the guardian because he acknowledged that the settlement appeared to be a factor clouding the interests of both parties.
To return to that simple question with no easy answers, what the court did have to decide, how likely is it that Terri would have expressed her wishes regarding tube feeing to her husband, or to his relatives?
She was, remember, an ordinary twenty-something, for whom a spat with her husband over the cost of a visit to the hairstylist constituted a large enough trauma for her to cry when she told her friend about it.
Is it reasonable for us to suppose that she spent a lot of time reflecting on medical eventualities?
It is not, and neither Michael nor his relatives have said that she did. They cite remarks she made on a couple of occasions, while watching a TV show where one of the characters had a serious illness. Casual, spontaneous comments of the sort made by lots of people, comments that may or may not indicate the speakers considered and thoughtful position on the subject.
As one critic of the court’s decision put it, these comments were on the order of young people who, on seeing an older person they perceive to be unattractive, declare that they hope they die young. If I ever get that fat, shoot me.
That’s a valid point. And it leaves Michael with the argument that yeah but Terri really meant it, she wouldn’t want this, and his relatives can only say, no she would not want this, not Terri.
And what can her parents say? Oh yes she would. Terri would want to live. And how come she only said this to you and your relatives, huh? Terri just loved life.
Judge Greer was not asked to decide whether Terri’s life was worth living. His role did not include resolving the differences between the Schindlers and Michael Schiavo. He was charged with deciding whether she would want to live as she had lived since 1990. And decide he did, whether you agree with his decision or not.
So did the system work? This question goes beyond the knee-jerk reactions from supporters of both camps. The fact that by this time, there were supporters of both camps would suggest that perhaps the system could be looked at.
This was a family matter. Tragic enough that it should end up in court, beyond indecency that it ended up all over TV screens and monitors and was in the mouths of millions is a big red flag that something is terribly wrong.
We may not be able to opine on Terri Schiavo’s wishes regarding what medical treatment she would want in what circumstance, but it is a reasonable assumption that neither Terri nor anyone else would wish their medical condition to become the subject of a media circus, complete with videos of them in their hospital bed broadcast over the airwaves 24-7 and insinuations of darker suspicions.
More things that are none of our business: If Terri and Michael were “having problems” or not. Terri would certainly not be the first young woman to marry her first beau in haste and repent at leisure, nor would the couple be the first to find that marriage has its rocky patches during that first 50 years or so.
If the Schindlers, however, had even the slightest inkling that Michael might have ever, even once, raised his hand to their daughter, the fact that for two years after her collapse, he lived with them, and cared for her with them as a family team, and from all accounts was for all practical purposes loved as their son, never mentioning these terrible allegations until fifteen years later, when the rift between them has become so heated, so acrimonious that they do not even speak to each other, cannot even be present together in Terri’s room, and court filings are flying like a swarm of gnats in the Florida sun, raises some provocative questions, to say the least.
For his part, since the Schindlers had apparently decided that the whole sad, ugly story was to be played out on the public stage, Michael did not make good choices in his public relations strategy, considering that his “enemy” had now grown beyond Ma & Pa Schindler and the kids, but now included a veritable army of religious “activists,” politicians, all of whom tend to be strongly traditional and socially conservative.
Not that viewers were evenly split along party lines, or even “left” and “right.”
And let us be clear, viewers is the correct term in this case. Even with everything from Terri’s medical records to court documents to up close and personal interviews with all the players, two things never changed: Terri’s condition, and the fact that the entire matter is none of our business.
Yet no one in the US could avoid it. For two weeks, US media covered the story as extensively, as continuously, as it did the death of Princess Diana, who was, at least, a public figure.
Terri Schiavo was not a public figure, on the contrary, regardless of whose “side” they were on, everyone who ever said so much as hello to her (and just about everyone who fell into that category has been interviewed) agrees that Terri was a private person, a shy woman who did not seek the spotlight, who preferred to live a quiet life, spending her time with close friends and family.
And the viewers raged at each other, as angry and as hostile as the two principal enemies. Opportunities to discuss serious questions raised by the situation were discarded in favor of sign-painting, political grandstanding, name calling and hair pulling. And each “side” developed a fan base, which bloomed into full-fledged cults, each of whom believed that their American idol could do no wrong, that the other cult’s idol was Satan incarnate, many of the same people who were accustomed to calm urging of nuance in the matter of the grisliest of American foreign policies now gave no quarter, brooked no questions, while their rivals, who had no problem with for example, the Futile Care law in Texas, and had lots of problems with even the suggestion that the US might consider following the example of every other industrialized nation on earth and providing even basic health care.
All who knew her agree that she was a happy woman, kind, and loving.
We cannot begin to imagine her agony were she aware of the roiling hatred between the people she loved and trusted most, her disgust to be the center of a national mudfight that has turned neighbor against neighbor, brother against brother, with a passion that the invasion and occupation of two countries, all the long laundry list of US atrocities could not do.
Those larger questions, like how to come to grips with the fact that we may not agree with another person’s choice regarding what level of life they would want to live, are questions that the American public is not only not ready to make, they are not even ready to talk about it.
On the day that Terri died, 40 thousand children around the world died of starvation. And a handful of rich Americans made a lot more money.
While there may be a reluctance to discuss questions of life and death as it pertains to affluent Americans with medical problems, when it comes to distributing death to the not-so-affluent in far off lands, that same level of tortured conflict is not evident.
As US news networks talk about legacies and what have we learned, few Americans have even an inkling of the lesson they have imparted to the rest of the world.