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What’s It All About, Terri?
by Lionel E. Deimel

 

Terri Schiavo is dead. The brain-damaged 41-year-old woman lived nearly two weeks without her feeding tube, during which time her parents ran out of legal strategies to restore it. Mercifully, Florida Governor Jeb Bush, who has shamelessly pandered to Schiavo’s parents and their right-to-life supporters, drew an ethical line—or perhaps only a pragmatic one—at actually kidnapping the dying woman in order to “protect” her.

Hardly more than an hour after her passing, the Schiavo and Schindler families were issuing conflicting statements regarding whether or not Michael Schiavo had been in the room when his wife died. Governor Bush issued a written statement in which he offered sympathy to the Schindlers but failed even to mention Michael Schiavo.1 (To his credit, while advocating the building of a “culture of life,” President George Bush offered condolences to “Terri Schiavo’s families.”) Just after Schiavo died, Jesse Jackson observed that the two families disagreed over the disposition of her remains. The Terri Schiavo case threatens to remain a cause célèbre.

Now that this extraordinary national ordeal has reached its inevitable climax, those who avoided hysteria over it should ask what it has really been about and why it received so much attention. What lessons can we learn?

Background

Theresa Marie Schiavo, nee Schindler, fell ill more than 15 years ago. Producing a full account of her illness, treatment, and legal actions resulting from her condition is surely a book-length undertaking, but, if lessons are to be drawn from this history, a few facts, as best as they can be determined, need to be known.

Terri and Michael Schiavo were married in November 1984. Terri had been undergoing fertility treatments for more than a year when, on February 25, 1990, she suffered coronary arrest and collapsed at home. Michael quickly summoned help, but his wife sustained brain damage as a result of being deprived of oxygen for several minutes. Medical intervention saved Terri’s life, but she lapsed into a coma. She emerged from it in about ten weeks, but she never regained consciousness.

Cardiac arrest was apparently the result of an abnormally low potassium level, but the cause of that condition has not been definitively identified. In addition to being treated for infertility, Schiavo had been under physician supervision for weight loss. Her weight, in fact, had been reduced to 110 pounds from a high of about 250 pounds in her teen years. Diet and bulimia may have played a role in the electrolyte imbalance that led to her heart problem.

Terri Schiavo’s medical care following her collapse seems to have been exemplary, and she regularly received rehabilitation therapy once out of her coma, albeit to no avail. Her husband even took her to California to try an experimental treatment. Michael Schiavo and Terri’s parents, Bob and Mary Schindler, seem initially to have worked together very closely in managing Terri’s care. Without objection, Michael was declared his wife’s guardian by the court, due to her incompetence.

Malpractice settlements brought on Terri Schiavo’s behalf in 1992 yielded more than a million dollars, the majority of which was placed in a trust fund for her care. Early in 1993, there was a falling out between Michael and the Schindlers. The nature of Terri’s care seems to have been a factor, but financial concerns were also involved. Michael Schiavo alleges that the Schindlers demanded a portion of the malpractice proceeds. In July, they went to court to remove Michael as guardian, arguing that he was inhibiting proper care for their daughter. Their complaint was eventually dismissed, and Michael remained his wife’s guardian to the end.

By 1994, Michael Schiavo concluded that there was no hope for Terri’s recovery, a notion long urged on him by her doctors. (She had been diagnosed as being in a persistent vegetative state within months of her cardiac arrest.) He first decided not to authorize aggressive treatment of infections and later resolved to remove the now-famous feeding tube that kept Terri alive. He petitioned the court in May 1998 to withdraw artificial life support.

The epic legal contest about which we have heard so much in the past months had begun in earnest. Nearly a decade earlier, the Florida Supreme Court heard a case that dealt with similar issues, and it established clear guidelines for adjudicating them. It was taken as a given that the right of privacy entails the right to make medical decisions for oneself, including the decision to reject treatment. The Florida Supreme Court concluded that one did not lose this right by virtue of being incapacitated. (The case involved someone who, unlike Terri Schiavo, had a living will.) A surrogate exercising the right to refuse medical treatment, however, cannot substitute his or her judgment for that of the patient. Therefore, to make such a choice for the patient, three conditions needed to be satisfied:

  1. The surrogate must be satisfied that any statement of intent by the patient was made knowingly and freely. Evidence of an oral declaration must be reliable.

  2. The surrogate must be assured that there is little probability of the patient’s regaining competence to make a decision for him- or herself.

  3. The surrogate must take care to consider any limitations or conditions expressed by the patient.

The court also had to decide if Terri’s guardian, her husband, was actually a trustworthy party to act as a surrogate.

The court found that Michael Schiavo had been unusually attentive in caring for his wife and could find no cause for his removal as guardian. Michael testified to his wife’s speaking to him about not wanting to be kept alive artificially should that prospect ever arise, but two witnesses, including Terri’s mother, reported contrary conversations. The court was unwilling to rely on Michael’s testimony because of a possible conflict of interest. The other testimony was deemed unreliable, however—the witnesses changed the details of their testimony over time—and irrelevant, as the conversations apparently took place when Terri was a pre-teen. On the other hand, the court found the testimony of Michael’s brother and sister-in-law straightforward and credible. They indicated that Terri had said that she would not want to be kept alive unconscious with no hope of improvement. The medical evidence at trial was viewed as clear-cut. The court found that, “beyond all doubt,” Terri was in a persistent vegetative state. It found, further, that the medical evidence conclusively established that she had “no hope of ever regaining consciousness.” Since no evidence suggested that Terri Schiavo qualified her adult declarations about being be kept alive artificially, the court had what it needed to grant Michael Schiavo’s petition to remove the feeding tube, and, in 2000, the court so ordered.

There followed appeals, new causes of action, removals and reattachments of the feeding tube, a law passed by the Florida legislature and later declared unconstitutional, actions by Governor Jeb Bush and by various interest groups, rejected appeals to the Supreme Court of the United States, statements from President George W. Bush, a special law passed by Congress, demonstrations, and much wailing and gnashing of teeth on talk radio. In this five-year drama, the judgment of the Florida Circuit Court was never reversed or seriously questioned. It does not seem an exaggeration to say that every conceivable legal aspect of the Terri Schiavo case was explored and adjudicated ad nauseam.2

Immediate Issues

At its heart, the Schiavo affair was a family dispute over the health care of a family member. In most such disputes, one side withdraws objections, after a time, to what is advocated by the other, due either to a change of heart or to weariness with the fight. That did not happen in this case. Ideally, such disputes remain private. This one did not.

Michael Schiavo concluded that his wife was unconscious and would never recover, and he believed that, under such circumstances, Terri would not want to be kept alive. Terri’s parents, however, even 15 years after her brain injury, were arguing that some recovery was possible and that she should be kept alive at all costs. After his daughter’s death, Bob Schindler referred to Terri’s “murder.”

The videotape of Schiavo that was repeatedly shown on television was disconcerting to most viewers, who are used to thinking of “pulling the plug” only on seemingly inert patients on ventilators. This patient breathed on her own, moved, and appeared to register emotion. The term applied to her condition, “persistent vegetative state,” was, at first, unfamiliar to most of us, but we were reassured by doctors that what we saw on the videotape was typical behavior for someone in Schiavo’s state and was not evidence of consciousness.

Terri’s sister protested that her sister was “not a vegetable.” This was true enough, but the intent seemed to be to suggest that Terri was not in the similar-sounding persistent vegetative state. The persistent vegetative state, a syndrome, not a disease, may result from various underlying pathologies. It has nothing to do with vegetables, and is perhaps unfortunately named. In the case of Terri Schiavo, much of the brain responsible for higher cognitive functions had died, and the former brain structures were replaced by cerebrospinal fluid, as could be seen in brain scans. Her brainstem, which is responsible for heartbeat and respiration, as well as for the sleep-wake cycle and eye blinks, was intact. What this means is that Terri Schiavo could not be conscious, could not react to emotional stimuli, and certainly could not talk, as, in apparent desperation, Mary Schindler suggested she did after her feeding tube was removed.3 No, Terri Schiavo was not a vegetable. She may, however, have been the equivalent of a reptile, as the only part of her brain that seemed to function—and nearly the only part that even existed—was her reptilian brainstem. The uniquely human part of her brain was clearly not going to grow back. It had, in a very real sense, turned to mush.

Deeper Issues

Neither Michael Schiavo nor the Schindlers have offered a detailed explanation of the thinking underpinning their position. The case involves some special circumstances, but, in common with so many others, it raises some obvious questions:

  1. What is the value of human life?

  2. What does it mean to be human?

  3. When is life not worth living?

The right-to-life community, which so conspicuously supported the Schindlers, seems to want us to believe that human life is infinitely valuable, and that no effort should be spared to protect it. Only such an extreme and abstract valuation of life could justify the positions of the most extreme right-to-life proponents, who oppose all methods of birth control other than abstinence and who are absolute in their opposition to abortion, even for rape victims. The right-to-life crowd believes that the value of life trumps any “quality of life” issues, but if we truly believed that life was of infinite value, we would avoid wars, abolish the death penalty, and would assure every citizen adequate health care. We have not done so. However attractive the infinite value notion might be philosophically, holding to that notion is disingenuous, since resources are never infinite. Individuals are free to spend their money as they choose, but, as a public policy issue, we must always ask if money should be spent to maintain the life of someone who cannot and will never enjoy it, when that money could alternatively be spent on people who might actually be able to benefit from it.

Whatever value we place on human life—nearly all of us would assign a high value—we must confront the question of what is human.4 This question is really many questions, all of them interesting, but not all of them relevant. The extreme right-to-life position focuses on what is biologically human, on what can be associated with the species Homo sapiens. In this sense, a fertilized egg is human, biological remains from the World Trade Center collapse are human, and Terri Schiavo was and is human. (She was alive, of course, but is no longer.) A related question is what is human at a more philosophical level. This is more problematic. A fertilized egg, though human in the biological sense, has little in common with a functioning adult. One has to suspect that even those who view all human life as sacred would not be indifferent to a choice made between discarding a fertilized egg or murdering a healthy adult. For most of us, all human life is not equivalent, and that intuition is embedded in our laws and in our personal behavior.

What, then, of Terri Schiavo? When she was alive, did she have more in common with the functioning adult or with the fertilized egg? Terri, in the form of a human adult, gave joy to members of her family, who surely loved her. On the other hand, if her doctors are to be believed, she had the consciousness of the egg, which is to say, none at all. She experienced no self-awareness, no pain, no hunger, no thirst, and no desires—a state very uncharacteristic of humans as we think of them. Whereas the egg has the potential to become fully human and to experience all these things, such experience was in Schiavo’s past, never to be part of her future. As a human being, in the more philosophical sense, Terri Schiavo was dead long before her feeding tube was removed.

The third question, about when life is no longer worth living, is perhaps the one about which there is most disagreement. It raises the issues of suicide, physician-assisted suicide, and euthanasia. Here, the Schiavo case does not present the most troubling issue, namely, what may we do when life simply becomes difficult to bear. Most people believe that there is little reason to keep someone alive artificially who has no consciousness and no hope of recovering it, especially if there is evidence that this is what the patient would have wished. Supporters of keeping Schiavo alive, however, raised another issue, namely, the means by which she was being kept alive. Whereas there is general agreement that, say, a respirator can be ethically removed from a patient sustained by it, some, including Pope John Paul II, suggested that providing liquid and nourishment through a feeding tube is a somehow different, presumably less “artificial,” intervention. The American medical community has never made such a distinction, and, to most of us, a feeding tube, like a respirator, looks like a medical technology, albeit a less sophisticated one. Why should providing nourishment be morally different from providing air to a patient? The lack of either is deadly. If one accepts John Paul II’s distinction, however, removing a feeding tube becomes physician-assisted suicide or, in cases where the patient’s wishes are unclear, murder.

Real Motives

The greatest wonder of the Schiavo affair is that it went on so long. After preliminary skirmishes, the legal battle between Michael Schiavo and the Schindler family lasted nearly seven years. Michael Schiavo had good reason to want to remove Terri’s feeding tube, but his tenacity is perplexing. The Schindlers accused him of wanting to inherit the remains of the malpractice awards, although there is likely nothing left. (The Schindlers themselves would have been next in line to inherit.) He is said to have been willing to forego any inheritance and to have turned down an offer of $1,000,000 from an anonymous donor to transfer guardianship to the Schindlers. Ironically, Michael was accused by his in-laws of not caring about Terri because he has a new family, yet they encouraged him after several years to date other women. The obvious question is why he did not simply divorce Terri, leaving her in the care of her parents, and remarry. The only rational answer to this question seems to be that he was intent on carrying out what he took to be Terri’s wishes. The irony is that Terri Schiavo was beyond caring, one way or the other.

Initially, the Schindlers and their son-in-law were equally aggressive about Terri’s care and equally hopeful about her recovery. When rational hope of recovery evaporated, Michael Schiavo, at length, accepted the inevitable. The Schindlers never did. This, too, is perplexing. We can all understand familial love—and especially parental love—but the Schindlers seem to have been in perpetual denial, refusing to believe the obvious because it was so painful. Their arguments against removal of the feeding tube (and even the details of their testimony) kept changing, as one after another proved ineffective. Perhaps they truly believed that Terri’s soul was endangered by the removal of the feeding tube. Perhaps they did not know how to stop fighting. Perhaps the support of the right-to-life lobby fed their egos and filled them with righteous indignation. We may never know, but most of us, and surely most of the medical community, are unlikely to remember them as heroes.

The Schindler’s particular obsession with keeping their daughter alive raises serious moral questions. At one point, they testified that, if Terri developed diabetes in her persistent vegetative state and had to have a leg amputated, they would sacrifice the leg. They were then asked similar questions, in turn, about the remaining limbs. Yes, the Schindlers were willing to leave Terri an unconscious head and torso if she could be kept alive. They were then asked what they would do if she needed a heart transplant. Unbelievably, they readily admitted that they would seek one. Finally, they said that they would keep their daughter alive even if they knew she would want artificial life support to be removed. Although the Schindlers later repudiated this testimony, suggesting that the attorney had led them into a trap, there was something that compelled them to enter that trap willingly. What can we conclude other than that Terri Schiavo’s parents were willing to use their helpless daughter to satisfy their own emotional needs, totally ignoring hers? Is this love, or is it fetishism? Can it ever be right to keep an unconscious person alive indefinitely solely for the benefit of others?

We must also wonder why the right-to-life people chose to make such a public case for keeping Terri Schiavo alive. Patients are quietly removed from life-support equipment every day without public protest. One answer, of course, is simply that the Schindlers were willing to fight to the end, thus keeping the cause in the public eye. Nonetheless, given that most people have no moral qualms about “pulling the plug” on hopeless cases, why would this movement choose such a hopeless case as a flagship project? The answer is likely that opponents of removing the feeding tube were relying on people’s misunderstanding the facts. This was a high-risk strategy, since a careful analysis of the Schiavo case could easily convince someone that granting Michael Schiavo’s request would be of less moral consequence to the principal party than, say, the typical abortion. On the other hand, the average citizen could be counted on not to learn—or certainly not fully to appreciate—the nature of the persistent vegetative state or the condition of Terri Schiavo’s brain. The videotape of the patient made her look like one of the fetal pictures the anti-abortion lobby loves to use, which we are expected to see as emotionally attractive, yet vulnerable and in need of protection. A win in the Schiavo case would have been a big win indeed. It might have inhibited removal of artificial means of life support even in cases where it is now routine, and it could have strengthened the case against abortion.

Then, there are the politicians. One suspects that, whether or not the Republican memo suggesting that the Schiavo case was good for the party was genuine, Republicans believed that supporting the Schindlers and their supporters would please the Republican base. Suprisingly, this seems to have been a miscalculation; public opinion polls revealed overwhelming opposition to what was seen by most people as Congressional interference in a very private matter. This was actually a reassuring development, and it suggests that the right-to-life lobby likewise made a terrible mistake. Too many people have either had to make a decision like Michael Schiavo’s or can at least imagine being either in his position or in Terri’s.

Finally, there is the question of where the Democrats were when Congress decided to involve itself in the Schiavo case in such unseemly haste. Although a small number of Democrats participated in a press conference that raised privacy and Constitutional issues as members of Congress were scurrying back to Washington, Democrats mostly followed the Republican lead. One reason for this, other than a strong desire to get back to Easter vacation, is that the handicapped-rights movement, generally a Democratic constituency, were supporting the Schindlers. It is hard to know if advocates for the disabled saw Terri Schiavo as disabled or whether they bought into the innocent-victim line of the right-to-lifers. In either case, this, too, was a miscalculation. Terri Schiavo was not disabled or handicapped or “differently-abled,” or any such. She was effectively dead, and suggesting otherwise has likely diminished the credibility of the handicapped-rights lobby.

What It All Means

Governor Bush has suggested that the Schiavo case may lead to legislation in Florida, and House Majority Leader Tom DeLay has used the case to excoriate the American judiciary generally. These and other politicians and interest groups will surely try to exploit the notoriety of the case to promote their own interests. Public opinion polls suggest that it is unlikely that citizens will take well to attempts to make it harder to remove artificial life support from hopeless patients, however.

Tom DeLay’s anti-judicial diatribe is especially worrisome. Whereas many would see the uniformity of judicial opinion at all levels in both state and Federal courts as a stinging rebuke to the Schindlers, the right-to-life and handicapped-rights advocates, the Florida governor and legislature, Congress, and the President, DeLay has suggested that the judiciary has simply thwarted the will of the people, as represented by their legislatures. We must hope that this view will not be taken seriously. Whereas Americans may well not appreciate that our system of checks and balances has worked exactly as it was meant to, unlike DeLay, they seem satisfied with the ultimate result. It is unlikely that even Tom DeLay will be able to succeed in destroying an entire branch of our government.

What the Schiavo case has done is to make more people think the unthinkable—what would they want if they were to find themselves in Terri Schiavo’s or some similar condition. Many people have executed living wills or durable powers of attorney. Substantially more have at least thought about it. This is likely to be the greatest legacy of this long-running and unfortunate affair. Advances in medical knowledge, practice, and technology may be counted on to continue to present us with difficult moral judgments. This seems a small price to pay for increasingly effective medical care.

In one final irony, the death of Pope John Paul II, who spoke in favor of the Schindlers’ position5, has, for now, knocked Terri Schiavo off the front page. She may never return.

— LED, 4/5/2005

Postscript: The behavior of politicians in this affair has raised several questions. Are there pens in Texas? (President Bush returned to Washington to sign the bill passed in such haste by Congress.) Is Senate Majority Leader Bill Frist used to making diagnoses without examining his patients? (He concluded that Terri Schiavo was not in a persistent vegetative state after watching a 1-hour videotape. He is a cardiac transplant surgeon.) Would Congressman Tom DeLay do away with all courts? (He is apparently unhappy both with Democratic and Republican judges in both Federal and state courts.)
 


1

After an extraordinarily difficult and tragic journey, Terri Schiavo is at rest. Columba and I offer our condolences to Mr. and Mrs. Schindler, Bobby Schindler, Suzanne Vitadamo and to all those who offered their prayers and support to Terri’s family over these past weeks, months and years. These prayers were not in vain.
 
Many across our state and around the world are deeply grieved by the way Terri died. I feel that grief very sharply as well. I remain convinced, however, that Terri’s death is a window through which we can see the many issues left unresolved in our families and in our society. For that, we can be thankful for all that the life of Terri Schiavo has taught us.
 
I still firmly believe that human life is a gift and a mystery, and that its mystery is most evident at its beginning and ending. May all of us whose hearts were moved during the life of Terri Schiavo grow in wisdom at its ending.”
 
Governor Jeb Bush

2

The Web site of the University of Miami Ethics Programs includes an excellent collection of materials about the Terri Schiavo case. Of special note is a detailed timeline of events, which was particularly useful in preparing the background section of this essay, as was the February 11, 2000 court order from Judge George W. Greer and the December 1, 2003, report to Governor Bush from Dr. Jay Wolfson.

3

It is distressing that two doctors came forward in Terri’s final days disputing the diagnosis of persistent vegetative state without actually examining her. One of these was Senator Bill Frist (R-Tenn.). Mary Schindler consistently asserted that her daughter responded to her, but most doctors who tried interacting with Schiavo, and who, presumably, were more objective observers, could find no correlation between stimuli and responses.

4

Even this question has seemed inadequate lately. Some people argue that the intelligence of chimpanzees or whales is such that their lives must be considered morally equivalent to our own. This is a troubling argument for many reasons, but it is one not easily dismissed in light of our growing understanding of higher mammals.

5

The testimony of Fr. Gerard Murphy, a Roman Catholic priest, represented Catholic doctrine as supporting Michael Schiavo’s petition. The Pope’s statement seems to have been aimed at modifying established Roman Catholic teaching. It will be interesting to see if it has any long-term influence.

 

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