Politics & Policy

Hope Vs. Despair

Remembering Terri Schiavo.

One year ago this week, Terri Schindler Schiavo died. She had been starved and dehydrated–at the request of her husband, and with the connivance of America’s judiciary. The nation watched the tally of her days without food and water rise, and as the count grew higher, the ghoulish speculations began: How many days would she live? In defiance of common sense, we were treated to Orwellian Newspeak–from the husband, Michael Schiavo, and his attorney, George Felos–about the “peaceful,” “quiet” “dying process” Terri was undergoing; she was simply going to “slip away.” Some self-described bioethicists even rhapsodized about the “euphoric” nature of her death.

Terri’s life, no longer worth living in the eyes of her husband and our judiciary, was ended because she no longer fit into any category of humanity that they were willing to recognize. Once she had been labeled a “vegetable,” her life was deemed to be over; she was considered dead not when she drew her final breath, but from the moment when her brain activity no longer met a certain threshold of “normal” functioning. This belief was reflected on the tombstone her husband provided: It reads that she “departed this earth” on February 25, 1990, the date of her brain injury, not the day she actually died, one year ago March 31.

Terri’s death was not the product of some nefarious conspiracy, but it was the result of a tragic confluence of currents within our culture. These currents–in the law, in medicine, and in the organs of popular culture–all came together in Terri’s case, and what happened to her was the newest face of what Pope John Paul II called the Culture of Death. This new face was masked, as the old had always been, by error, half-truths, comfortable fictions, and outright deception. Those fighting to save Terri’s life did not recognize what they were up against and were unprepared for its demands until it was too late. The shift in our culture that made her death possible began long before March 31, 2005, and the elements of that shift need to be identified if we are to learn from what happened.

At bottom, there has been a movement in our culture away from an ethic of “reverence for life” to what might be described as an ethic of “justification for life.” Traditional Western ethics, built on a foundation of Judeo-Christian morality, sees human life as intrinsically valuable: It is to be preserved in so far as reasonably possible because life is worthwhile in and of itself. This has been the controlling presumption in our society for at least the past millennium. This presumption has been overturned in the last few decades. Now, at least among the elites who dominate the academy, the press, the law, and the medical profession, the continuance of human life is dependent on whether the human being in question meets a succession of standards and tests aimed at determining whether or not his life is “worthy of being lived.”

This shift can be seen in the very language used to debate the issue. Over and over on the various cable news programs and in the print media, I saw the issue framed as: Under what circumstances should life be “prolonged”? This word is telling: Generally speaking, the word “prolong” does not have a positive connotation. We do not speak of “prolonging” good things, we speak rather of unpleasant things as being “prolonged.” The implication, reinforced every time the word was used, was that Terri’s life was something bad or unpleasant that ought to be over. The use of this word also signaled a shift in the burden of proof. Amongst the bioethicists and pundits the argument was framed as though those seeking to preserve Terri’s life had to justify its “prolongation.” This language stands traditional ethics on its head, and undermines the whole idea of life as a good in and of itself.

The idea that continued human life now requires justification is also evident in the currents of legal thought dominant among those involved in end-of-life issues. They have borrowed a page from the pro-abortion movement’s handbook and have begun to redefine legal personhood so as to leave the profoundly disabled outside its boundaries. Dr. Ronald Cranford, a leading bioethicist and the chief medical witness appearing on behalf of Michael Schiavo, has testified that patients in a “persistent vegetative state” (PVS), as well as the profoundly disabled, lack “personhood” and consequently have no constitutional rights. He admitted this position on national television last year, when challenged by Sean Hannity on his Fox News program. Cranford bases his position on a redefinition of personhood using “consciousness” as the criterion. Cranford and David Randolph Smith, an attorney, co-authored an article advancing this position in The Journal of the American Society of Law and Medicine, in which they contended that “consciousness” is the “most critical moral, legal, and constitutional” basis for personhood. Smith has argued that the presence of neo-cortical function, which involves the higher faculties of the brain, should be the criterion for personhood. Cranford and Smith themselves recognize the affinity their arguments have with those involving abortion, saying in their article that “the arguments concerning when human personhood ends will have significant impact on when human personhood begins.” Michael Schiavo’s attorney. George Felos, used this argument in one of Terri’s 2001 appellate proceedings, saying that the litmus test for personhood is “whether or not a person can bring a spoon to their mouth.”

The legal thinking advancing this “justification of life” philosophy has been accompanied by a shift in the thinking of bioethicists and doctors. In the past, medicine operated under a presumption that food and water simply constituted the basic minimum of care offered to a patient, as a necessity of sustaining life. Now an alternative presumption applies, one based on a redefinition of the boundaries of what constitutes medical “treatment.” Under the new definition, food and water, because they contribute to the patient’s overall well-being and recovery, now can be considered treatment. Nor does this redefinition apply only to cases like Terri’s, where a feeding tube is used; Dr. Cranford has stated, in his testimony for the Nancy Cruzan case, that even spoon-feeding should be considered “treatment.”

By this principle, practically anything a health-care provider does for a patient becomes “treatment.” Yet another redefinition has taken place in the case of the word “futile.” It is a commonplace of medical ethics that one is under no obligation to continue, and may indeed be obliged to withdraw, treatment that is “futile.” Cindy Province, RN, MSN, associate director of the Bioethics Center of St. Louis, has written that a treatment has typically been considered “futile” if it has no benefit or desired effect whatsoever. Food has not been considered treatment because no one expects food to have any “direct curative effect”; feeding is not “futile” merely because it fails to cure a disease. But this kind of commonsense thinking has been rejected by much of the medical community. In Province’s words, “this view has been largely replaced by a more general view of the nature of nutrition as treatment . . . in that it has not enabled the patient to recover from his underlying condition.”

Now, since food and water, redefined as treatment, do not help the patient to recover from his underlying condition, they can be labeled as “futile.” Once it has been decreed, through linguistic sleight-of-hand, that feeding the patient is “futile,” only a short step remains to justifying its withdrawal.

The misdiagnosis of Terri Schiavo as being in a PVS almost seems to have been tailor-made to fit within the legal definitions permitting the withdrawal of her feeding tube. Indeed, some of those legal definitions that permitted a judge to order the removal of Terri’s feeding tube were changed, with the aid of Schiavo attorney George Felos, while Terri’s case was actually pending. That diagnosis of PVS, enshrined as legal “fact” by Judge George Greer, was the foundation of the decision that led to her death.

The Schindlers, aided by pro-life organizations and numerous concerned attorneys and doctors, among whom were prominent and respected neurologists, amassed a considerable body of evidence that Terri’s PVS diagnosis was faulty and should be reconsidered. They also adduced evidence that advances in both diagnostic techniques and treatment of brain injuries justified a fresh look. Even disinterested medical observers such as Dr. Bernadine Healy, a former director of the National Institutes of Health and medical columnist for U.S. News & World Report, decried the diagnostic procedures followed in Terri’s case as simply “not good enough” and urged a reexamination.

But these efforts were too little, too late. The case for Terri’s life was lost that day in court when Judge Greer handed down his ruling that she was in a PVS. The problem, as Bob and Mary Schindler readily admit today, was that early on in the case they were hopelessly outlawyered and out-doctored. They were retirees with little money and less knowledge of what they were up against. The legal help they obtained in those early days was willing and sympathetic, but had no expertise in the issues facing them.

By contrast, whether by design or luck, Michael Schiavo retained George Felos, an attorney who had already won several “right-to-die” cases. Furthermore, Felos was politically well-connected: He was friendly with several prominent politicians and served on the board of Florida’s largest hospice organization. He was a major figure in the “right-to-die” movement. Felos was familiar with the legal issues, and had access to renowned experts who would be sympathetic to his cause.

The foremost of those experts was the aforementioned Dr. Cranford. Cranford has appeared as an expert witness in dozens of end-of-life cases, among them the famous Nancy Cruzan case. He is regarded as perhaps the leading court expert in PVS today. Curiously, he seems to testify only that patients are in a PVS, or otherwise so far incapacitated as to warrant their demise; the courts have apparently overlooked the fact that his diagnoses always seem to come out the same way.

The Schindlers were not able to muster a medical expert on their behalf of anything like the stature of Dr. Cranford. They obtained two competent but relatively unknown doctors, one of whom had been unfortunate enough to have had his treatment methods questioned by the Florida Board of Medicine (he was eventually cleared, but the damage was done). The Schindlers’ inability to present prominent experts who would support their position was not due to the nonexistence of such experts, as later experience would bear out; but at the time, they simply had no idea whom to turn to, and their legal counsel had no more idea. Recall that this was in the mid-to-late 1990s, long before the pro-life community became energized about the case. So Judge Greer, dazzled by the experts Felos presented, and unconvinced by the Schindlers’ attorneys, ruled that Terri was in PVS–and that, I believe, is when Terri’s fate was sealed. The Schindlers were never able to overcome our legal system’s traditional unwillingness to revisit a trial judge’s findings of fact.

The lesson that the Schindlers and others concerned for the dignity of all human life have taken from this defeat is that we cannot afford to wait till someone’s life is threatened by a court order before we act. Bob and Mary Schindler, and the pro-life community, were unprepared for the fight to save Terri. They did not then understand what they were up against. Today, the Schindlers, through their newly reorganized “Terri Schindler Schiavo Foundation” are working to educate people on these issues. They are working with right-to-life organizations to promote and lobby for legislation that would offer greater protection to those whom some in our society would deem unworthy of continued life. They, and many others, are working to create a network of doctors, lawyers, and clergy who are knowledgeable about the legal, medical, and moral issues involved in end-of-life cases and who can be trusted to approach them from a “reverence for life” point of view.

It is clear now that the battle to protect the lives of people like Terri is best won at the very outset–by amassing the best scientific and medical evidence to support the position that even lives that seem profoundly limited are nonetheless worthwhile and human. Ultimately, this is a battle for people’s hearts and minds: Once people understand that there is hope in life, even when that life is limited or entails suffering, they will be unwilling to embrace death as a solution to problems. In the end, the struggle to protect the lives of people like Terri Schiavo is a battle of hope against despair.

Rev. Robert Johansen is a Catholic priest of the Diocese of Kalamazoo, Mich.

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