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The Case of Theresa Schiavo

In fact we do not even know that. The brain remains perhaps the last medical frontier. In the case of Theresa Schiavo, all that seemed clear was that a significant amount of neurological damage had occurred during however many minutes she lacked oxygen to the brain. According to The Merck Manual, any more than four to six minutes of such anoxia can result in irreversible brain damage or death. We do not know how many minutes Theresa Schiavo spent in cardiac arrest. It was later generally reported that this arrest was a “heart attack” caused by a potassium deficiency. The potassium deficiency, it was widely suggested, had been caused by what was sometimes described as “bulimia” and sometimes, more generally, as an “eating disorder.”

This suggestion persisted, carrying with it a hint of the disapproval often expressed toward people in unfortunate circumstances who can be suspected to have had bad habits. The “bad habits” serve in such cases to isolate these unfortunate circumstances from our own. Patricia J. Williams, in The Nation, striking this not uncommon note, spoke of

the bizarre events played out in the name of force-feeding Terri Schiavo, a woman whose bulimic aversion to food was extreme enough to induce a massive systemic crisis that left her in what doctors describe as a “persistent vegetative state.”

Theresa Schiavo, in this construct, had for whatever reason played a role in her own demise, meaning that what happened to her need not happen to us.

However comforting it may have been to believe this, the suggestion (no diagnosis exists) of an “eating disorder” appears to have been entirely assumptive, based on no evidence beyond the unexceptional facts that she had some years before gained weight, gone on a diet, and lost the weight. We do know that on Theresa Schiavo’s initial testing the level of serum potassium was 2.0, not only well below the “normal” range, which is 3.5 to 5.0, but also below the level, 3.0, at which cardiac effects may be expected. Bulimia, or any vomiting at all, can cause potassium deficiency. Since other common causes include kidney disorders, colon polyps, and the ingestion of diuretics, laxatives, asthma medications, certain penicillins, or even large amounts of licorice, the lowered serum potassium level on its own does not tell us what led to the deficiency that is believed to have triggered the cardiac arrest.

What was finally diagnosed as the reason for what happened to her?” Larry King asked Michael Schiavo on CNN on March 21.

They’re speculating that she had bulimia,” Michael Schiavo said. (Who “they” might be was left unexplored.)

Did you have any knowledge of that?” Larry King asked.

No, I did not,” Michael Schiavo said.

Was she concerned about her weight?” Larry King asked.

Believe me,” Michael Schiavo answered, as if he was accustomed to talking to people who might not, “she was always concerned with her weight, yes. She was very heavy when she was younger, before I met her.”

The “heart attack” itself was another such doubtful assumption. Whatever caused Teresa Schiavo’s heart to stop, it seems not to have been what came to be generally described as a “heart attack.” Peter Bambakidis, M.D., a Cleveland neurologist who had been appointed by the Florida state circuit court that covers Pinellas County to review the Schiavo case and testify as an expert medical witness, addressed this point in a 2002 evidentiary hearing before Judge George W. Greer:

Q: You concluded that she did have a heart attack, though, correct?

A: No, I did not.

Q: It’s not in your report?

A: No, I don’t believe it is.

Q: What is your understanding of what happened to her?

A: Well, my understanding is that she did have a cardiac arrest.

Q: Okay.

A: My understanding is further that there seems—it’s still not definite exactly what the cause of the cardiac arrest was.

Q: It was definitely not a heart attack because her enzymes were not elevated, correct?

A: Well, I’m not going to answer that directly. Suffice it to say that the diagnosis of MI was not made or myocardial infarction was not made.

2.

During the period this spring when the spectral presence called “Terri” dominated the national discourse, such areas of confusion between what was known and not known and merely assumed or repeated went largely unremarked upon. Taking a position, which had become the essence of that discourse, demanded impenetrable certainty. There were two entire weeks during which it was possible to hear the Schiavo case debated all day and all night and still not get it straight whether there was, as people were actually shouting at each other on the cable talk shows, “anybody home.” (“You’re wrong, Pat, flat line, nobody home.”) Theresa Schiavo was repeatedly described as “brain dead.” This was inaccurate: those whose brains are dead are unable even to breathe, and can be kept alive only on ventilators. She was repeatedly described as “terminal.” This too was inaccurate. She was “terminal” only in the sense that her husband had obtained a court order authorizing the removal of her feeding tube; her actual physical health was such that she managed to stay alive in a hospice, in which only palliative treatment is given and patients without antibiotics often die of the pneumonia that accompanies immobility or the bacteremia that accompanies urinary catheterization, for five years.

Even after the removal of the feeding tube, she lived thirteen days. The removal of this feeding tube was repeatedly described as “honoring her directive.” This, again, was inaccurate: there was no directive. Any expressed wish in this matter existed only in the belated telling of her husband and two of his relatives (his brother Scott Schiavo and their sister-in-law Joan Schiavo), who testified in a hearing on a 1998 petition that they had heard Theresa express the thought that she would not wish her life to be artificially prolonged. One time she was said to have expressed this thought was when Michael and Scott Schiavo’s grandmother was on life support. “If I ever go like that, just let me go,” Scott Schiavo said that he had heard Theresa say. “Don’t leave me there.” Another expression of the thought, Joan Schiavo testified, occurred when the two women were watching a television movie about a man on a feeding tube: according to Michael Schiavo’s attorney, George J. Felos, what Theresa said was this: “No tubes for me.”

Only in 1997, seven years after the cardiac arrest and a year before he first requested that the feeding tube be removed, did Michael Schiavo first mention these recalled wishes to the Schindlers. In 1992 he had pursued (and finally settled, for approximately $1.1 million after fees) a medical negligence suit against the doctors who had supervised Theresa Schiavo’s infertility treatment, arguing that they had failed to pick up the potassium imbalance. During the course of this 1992 malpractice action Michael Schiavo (who had not yet been videotaped in what seemed to be a legal office explaining that his wife had never wanted to “live on tubes,” never wanted “to be a burden”) was asked how he saw their future:

A: I see myself hopefully finishing school and taking care of my wife.

Q: Where do you want to take care of your wife?

A: I want to bring her home.

Q: If you had the resources available to you, if you had the equipment and the people, would you do that?

A: Yes. I would, in a heartbeat.

Q: How do you feel about being married to Terri now?

A: I feel wonderful. She’s my life and I wouldn’t trade her for the world. I believe in my marriage vows.

Q: You believe in your wedding vows, what do you mean by that?

A: I believe in the vows I took with my wife, through sickness, in health, for richer or poor. I married my wife because I love her and I want to spend the rest of my life with her. I’m going to do that.

Many ordinarily obscured emotions surfaced during those weeks just before and after Theresa Schiavo’s feeding tube was removed. I recall talking one night at dinner to a psychiatric social worker who said that six of her clients were speaking of little else. Among those who did not necessarily see the situation as one that required discussion with a professional therapist, the most common reaction seemed to be what they described as “disgust.” Many people expressed “disgust” with the “carnival.” They expressed “disgust” with the “sideshow,” the “media circus,” the calculated inflammation of anti-abortion sentiment outside the hospice. They expressed “disgust” with the nation’s elected officials, the “self-righteous hypocrites” who were seen as showing an undue eagerness to change the subject, to turn away from those foreign or domestic adventures (“messing around with Social Security” kept getting mentioned) that could seem doubtful to even the most committed supporters. Especially in light of the “Talking Points” memo circulating among Republicans that characterized the Schiavo case as “a great political issue” and “a tough issue for Democrats,” these elected officials were seen, by those polled across the political spectrum, even by evangelical Christians, as “cynical,” “pandering to their base,” trying to reap political benefit by intervening in what was repeatedly described, as if this were a right-to-die case, which it was not, a point that came to be increasingly blurred, as a “personal choice.”

It was perfectly clear that the elected officials in question were in fact trying to reap political benefit. On the other hand there was no novelty in this. Given the ample opportunities for disgust that the same elected officials had offered the country on a range of other issues, this expressed distress with what was essentially a civil rights intervention seemed unusual, excessive, even displaced. There came to seem a considerable investment in keeping this story on the safe ground of political indignation, a refuge seized even by Michael Schiavo. “I think it’s outrageous, and I think that every person in this country should be scared,” he told Larry King about the decision of Congress to ask that a federal court hear the matter:

The government is going to trample all over your private and personal matters. It’s outrageous that these people that we elect are not letting you have your civil liberties to choose what you want when you die. They’re going to tell you, you can’t.

On Nightline, he took this politicized and oddly distanced indignation a step further, offering viewers an action line: “You better call your congressman, because they’re going to run your life.”

There was a good deal of domestic pathology involved here, uncertain personal ground, which may have been one reason people preferred to see it as a political story. There was the understandable but ultimately fatal acrimony between the Schindler and Schiavo families. There was the unassuagable grief of the parents, the fierce parental need to construe any abandonment of hope as a betrayal of their first-born child. There was the puzzlingly histrionic insistence of the husband, who for at least ten years had been involved with the woman he called his “fiancĂŠe” and with whom he now had two children, that the Schindlers could have no reasonable interests in their daughter’s treatment or ultimate fate. There was the continuing bitterness of the Schindlers over Michael Schiavo’s decision, in April 2000, to move his wife from the last in a series of nursing homes to the Woodside Hospice, part of the Hospice of the Florida Suncoast (“the Florida Suncoast” is essentially the west or Gulf coast of central Florida), an institution for which George J. Felos, who was by then Michael Schiavo’s attorney, had served as chairman of the board.

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