Home >> Volume 1, Issue 02

The Secret Life of Terri Schiavo

William Luse

Back in 2003, when the tube was pulled for the second time, and Terri Schiavo was in the course of being dehydrated to death by judicial edict, I believed then, and believe now, that this crime against her was allowed to go forth in defense of a religious dogma. I will elaborate shortly; but with the anniversary of her death so close behind us, I wish to resurrect as well the outrage of those days, gradually transformed into a stunned disbelief - even among many who saw it coming from afar - that it really was going to happen. Upon being informed of what had commenced that very day, one of my students, a girl who hadn’ t followed the news but wanted to write a paper in support of euthanasia, asked in bewilderment, “They’re doing what to her?” Another young lady who had followed the case diligently and written about it often at her website was at last reduced to a one-line, sputtering rant: “Feed the woman, dammit!”

It was quite a shocking thing, really, for it appeared that in the lead-up an innocent woman had been put on trial for her life in the less high-stakes arena of a civil court, where people tend to fight over money, child custody, and workplace discrimination. She was charged with some not very clearly defined, but capital, offense, found guilty and sentenced accordingly. To those of us who had trouble understanding how severe disability could persuade a court to lower a death sentence, it was explained, often with great condescension, that Terri was the plaintiff, not the defendant, in this case, and that it was her humanity and civil rights that were being protected - even though this might be the last she’d ever see of them. She had a right to be free of an unduly burdensome treatment, and to have a say (via surrogate, her husband Michael) in the manner of her demise, that she might take her leave in as dignified a manner as possible. But I wonder how many plaintiffs go to court in defense of their rights motivated by the ironically singular hope that the judge’s verdict will send them to the grave. How many, that is, are allowed (indeed, ordered by the court) to play the part of both accuser and accused – in essence, to prosecute themselves on the testimony of ‘friendly’ witnesses – in the same proceeding? The question was asked more than once: how could we have done to her what we would not do to a prisoner on death row?

Bringing the further objection that her status was in no way like that of the prisoner, for she was not being punished at all. The motive here was love, not hate, nor even a benign indifference, but rather mercy over malice, compassion in lieu of the contempt offered by those who would deny her inalienable right to be “let go”, to die naturally once liberated from the extraordinary and life-prolonging interference provided by a percutaneous endoscopic gastrostomy tube, otherwise known as a PEG tube. This marvel of modern technology was not merely keeping her alive, but preventing the inevitable, her death, and was therefore in the way of destroying her dignity (a word, during the whole affair, that would never go away). No, Terri was not at all a prisoner except to the fanatical religiosity of those who would frustrate detaching the tube, and who seemed to find a perverse satisfaction in, quite literally to revel in, perpetrating a cruel and unusual punishment by forcing her to live. If any doubted that Terri preferred (or would prefer, if she could speak) dying to living, we were advised to put ourselves in her place: “Who among us would want to live like this?” And no doubt to this irrelevancy very few would brave the breach.

As events progressed, Terri was given a reprieve, and thus my outrage as well. The Florida legislature and Governor Jeb Bush, besieged by several hundred thousand citizen emails, swung belatedly into action and passed Terri’s Law, requiring reinsertion of the feeding tube and thereby saving her life. Things seemed to be swinging Terri’s way. The populace appeared to be on her side, but it was only an appearance. Like most reprieves, this one was temporary. The legal death machine arrayed against her would not sleep. Michael, Terri’s ruthlessly devoted husband (in his determination that death would part them), and whose domestic life while Terri languished in hospice was one of protracted adultery, was fortunate to have it on his side. That a court would consider such a man a responsible guardian concerned only with Terri’s well-being struck many of us as bizarre, the mark of a society whose flirtation with moral outlawry had finished in the bedroom.(1) In September 2004, the Florida Supreme Court ruled Terri’s law unconstitutional, on the grounds that it violated separation of powers…and something more: “Our hearts can fully comprehend the grief so fully demonstrated by Theresa’s family members,” said Chief Justice Barbara Pariente, expressing sympathy of a sort for the plight of Terri’s parents over the long years. “But our hearts are not the law. What is in the Constitution always must prevail over emotion.”(2)

Which at the time was a law I couldn’t fathom, for it was indeed heartbreaking to watch her parents’ anguish magnified by a justice system no longer bound by even the most rudimentary of human affections, but by a rule of law that finds them irrelevant, even, in a way, repugnant. With the courts clearing the way, Michael would now honor his wife’s wish - even as he shared the bed of, and had children by, another woman - to be rid of the indignity she now suffered. This final act of love, which could be consummated only in her death, outweighed that of her parents, which would find its crowning glory in merely caring for her, as they had when she was a baby.

After the Supreme Court’s ruling, events began to move with a seemingly remorseless certainty. There was of course a flurry of legal activity, and even the U.S. Congress got involved, issuing subpoenas to Michael and Terri Schiavo, and passing a law requesting that the federal courts review the case de novo to see that Terri’s rights had been truly protected, which request the courts summarily dismissed. Terri’s parents, Bob and Mary Schindler, their avenues for appeal in Florida exhausted, took their desperation up the food chain of the federal court system, casting at the feet of these eminences every motion that could be thought of, probably no longer in the hope that a note of legal logic might arrest someone’s attention, but that a heart might be moved, that a judge’s conscience might stir to life. But here, as during all previous years, almost without exception, they encountered the obduracy of the “rule of law,” which in most instances is desirable, save in those when the machinery of state begins to busy itself with the business of death. Although an engine of enormously stubborn determination and intellectual arrogance, jealous of protecting its turf against legislative and executive encroachments, it also gave the impression of being a barely sentient automaton, dotting all the i’s and crossing all the t’s without ever taking notice of what exactly it was putting its signature to. Pat Anderson, the Schindlers’ attorney, called it The Rule of Terri’s Case: “If following a legal procedure will likely result in Terri dying, it will be adhered to. But if a procedure could make that outcome more difficult to obtain, it will not be followed.” (3)

In obedience to it, the U.S. Supreme Court refused to hear the case, and Terri Schiavo was due-processed right into her grave.

Judge Greer had set a date for removing the tube, and on March 18, 2005, it came out by means of some human hand. Thirteen days later, on March 31st, she passed away, the victim of a judicially sanctioned murder carried out by medical personnel charged with healing the sick and caring for the helpless, the proceedings guarded by officers of the law charged with apprehending the guilty and protecting the innocent, and the nature of the entire transaction given official cover by a medical examiner who wrote in his post-autopsy report:

What was the cause and manner of death?
Mrs. Schiavo suffered a severe anoxic brain injury. The cause of which cannot be determined with reasonable medical certainty. The manner of death will therefore be certified as undetermined. (5)

*

In the aftermath we were assured that all had proceeded with the utmost integrity, that no one’s civil rights had been violated, and patient autonomy protected. Even journals like the Annals of Internal Medicine lent their prestige to the medical and juridical goings-on:

In our opinion, the law did not fail Terri Schiavo. In fact, no end-of-life guardianship case in U.S. history has generated as much high-quality evidence, judicial attention, or legal scrutiny as the Terri Schiavo case. Throughout a lengthy trial and evidentiary hearing, countless motions, oral arguments, and numerous appeals to every available state and federal court, this case shows that the judicial process works at the end of life. The Florida guardianship law was clear, and the law was followed. (6)

It’s not clear who needed to hear this aside from people who already believed it, since it certainly wouldn’t carry much weight with those who thought the outcome a crime, in which event the process leading to it must, by necessity, have been in some measure corrupt. [For the case that the process was indeed corrupt, see Lydia McGrew’s article in this issue of TCR]. It is also interesting that the authors, two medical ethicists and a doctor of neurology, should take satisfaction in the discovery that judges and lawyers still ably ply their trades, rather than in the knowledge that members of their own profession had committed no ethical violations or moral misjudgements, either in their treatment of Terri (up to and including the tube’s removal) or in their evaluation of the treatment she deserved as a living member of the human family.

Such solace as that found in Annals was not restricted to certainly secular and scientifically ‘objective’ publications. (Similar sentiments can be found at the Journal of Palliative Medicine (7) and Critical Care Medicine.) In First Things, attorney Robert Miller, while ceding that Terri had been done an injustice, nevertheless informed that journal’s ecumenical readership that the blame could not be laid to the legal system:

The simple fact is that Terri Schiavo’s legal rights were never once violated…under the Constitution and laws of the United States... (8)

In response to which a reader asks, of the judges involved, “Could they not have followed the voice of conscience that so many other judges claim to hear when they override laws passed by the representatives of the people, as activist judges have been doing for the past thirty years?” (9) Miller’s answer:

The separation of the legislative and judicial functions is essential to protecting the safety and rights of individuals, for if judges go beyond the judicial function, then the outcome of cases will turn on the peculiar moral notions of individual judges, (10) and we will have a government not of laws but of men. In a case like Terri Schiavo’s, the temptation to ignore the law is strong, but we need to keep our heads and remember that the fundamental principles of our system of government serve very large interests, interests larger even than the life or death of a single individual. This, incidentally, is why men have been willing to die for these principles.

One did, a woman at any rate, and which must have put proof to our need for veneration of “large interests”, such as the one finding separation of powers more important in principle than preventing the murder of a single individual.

So (we are asked to believe), the law was followed to the letter, the courts making no missteps in the interpretation thereof. Though I doubt this is true, even if we grant it for the sake of argument, this widely held assertion could not allay the disquiet following upon such a display of judicial rectitude that a good many of us found it worth reviling. The law upon which we were assured that Judge Greer’s wisdom had been so admirably wielded in defense of Terri’s rights was reputedly the one protecting a patient’s prerogative to have a say in the manner of his leaving this world should such be possible. Should it not be, then he may exercise this right by proxy. Someone must be able to make decisions on behalf of the incapacitated, and the court found the evidence convincing –mostly on the basis of Michael Schiavo’s unquestioned veracity – that Terri’s wish was that she not be kept alive in these circumstances. Patient autonomy, a sacred trust of the court, was thus protected against all usurpers, even though it killed the patient.

Since most of us already see the sense in such a law; since most of us understand that those who can’t speak for themselves need someone to speak for them; since it is, in fact, such an eminently obvious necessity that most people don’t need a law to tell them of its wisdom – I don’t believe it was the law driving events, but rather provided cover for a pre-existing predilection, which found its legal sustenance in recent additions to the Florida statutes, and its metaphysical impulse in a culture that, in recent decades, somehow finds itself able to tolerate (indeed, has taken as its own) a new and oxymoronic form of medical treatment called legal murder.

As Miller explains, another law was riding beneath the surface, propping up the proceedings:

The result in the case was so unjust not because the courts ignored the law but because they followed it. The substantive laws of Florda…like the laws of most states, expressly provide that a guardian may starve to death a ward in a persistent vegetative state…

To this latter charge of the recalcitrants, that Terri was in fact murdered, came the rebuttal that, no, she was in fact “allowed to die,” the feeding tube an unnatural and extraordinary means of prolonging life when death was otherwise imminent. To the further question – “Imminent from what cause?” – no answer should have been forthcoming, since the medical examiner has already told us that the cause of Terri’s death was “undetermined.” By ‘cause of death’ he could only have meant the cause of the initial trauma that led to the anoxia which led to PVS, from none of which was she in danger of perishing. In the Florida statutes, a terminal condition “…means a condition caused by injury, disease, or illness from which there is no reasonable medical probability of recovery and which, without treatment, can be expected to cause death.” No one in his right mind, not even medical personnel, was arguing that Terri’s apparent condition of complete unconsciousness (persistent and vegetative, if it will assuage a conscience) was killing her. So, what was?

I figure it goes something like this: Brain anoxia can cause death if it stops the heart. But the medics have to try to restart your heart, because they don’t know you’ve suffered anoxia until after they’ve treated you. Then, after they’ve treated you, they discover you’ve got it and start thinking, “She should have died,” another way of saying, “We shouldn’t have treated her.” Except that they had to. So now they want to pull your feeding tube to finish off what would have happened if they hadn’t treated you, and then say that the cause of death was the thing they treated you for, not the pulling of the tube. Like most attempts to rationalize a contemptible act, it is arrived at by assigning a remote cause to an immediate effect; others of us just see it as getting where we want to go by benefit of the devil’s hindsight.

*

As the reader might suppose, I have little patience for – to be frank, a viscerally intolerant revulsion to – either defense: that lauding the pristine legal performance or the one claiming that Terri had been “allowed to die,” and not merely because I thought the arguments bad, but because I doubt that the people advancing the arguments believed them either.

As to the first, it must have been disheartening for Terri’s defenders to be told by a Christian like Miller that the kind of judge who would stand up to say that a law permitting murder is unjust and therefore no law at all is the same kind of judge as he who invents the permission in the first place. It must have been poor comfort indeed to be told, further, that her rights had been protected at every step along the way, when the result of the protection was the murder in question, and which Miller himself concedes. When he rightly points out that, though the state and federal courts provided the stage on which these procedural hearings were acted out, and that it was the “substantive” law in the Florida statutes that was the root of the evil and rendered the script’s resolution a forgone conclusion, a layman cannot be blamed for his incomprehension that a process so allegedly just could produce so grotesque a caricature of justice itself.

It was able to do so because, as I have characterized it, “the play’s the thing”; because those procedural hearings – ostensibly concerned with discovering Terri’s true wishes – were not about that at all, but about validating, or further cementing into eternal precedence, that evil Florida statute to which Miller refers us. And that statute could not be given its fullest mandate unless Terri were first made dead. Yet, I am not prepared to call it the ‘root’ of the evil until a further question has been answered, one that was never asked: what is that statute doing on the books in the first place? Why is it there?

To which question we shall also be led by examining the second defense, that against the charge of murder, and for the proposition that she had been allowed to die. The proposition’s apologia takes various forms, but can all be boiled down to a single diagnosis: that Terri Schiavo was the victim of a hopeless and irrecoverable anoxic brain injury resulting in the loss of all higher functions, including the sort of minimal consciousness that would allow any awareness, whatsoever, of the world around her or even of her own existence. (11) It is cruel and unnatural to compel anyone to persist in such a state, and a mercy to relieve her of it. And yet she was being forced to remain in it by attachment to an artificial means of life support. (Which brings to mind the riposte given in a website combox by a lawyer not yet seated on a district court: “For what human being who ever existed has food and water not served as life support?”)

Artificiality attends most human activities. In the health field alone, chemotherapeutic cocktails, dialysis machines, and pacemakers all supply artificial means of prolonging life. They supply something our bodies cannot supply for themselves, and are not to be found as free-floating remedies in the natural world. So that the means of sustaining life are artificial cannot be the central difficulty. It can only be that the circumstances under which the means are employed are somehow superfluous, or extraordinary, in the sense that they constitute the weapons in a losing battle against a pathology so pernicious that it is quite literally killing its victim; and not only that, but that this condition is in its end, or terminal, stage, spiraling swiftly towards death, such that the treatment itself can no longer rightly be called by that name, so manifest is its futility. We all recognize (I trust) that every man’s battle to stay alive can only end in his dying, and must bring before it a moment of resignation and dignified surrender, when he chooses to lay down his arms.

The problem in Terri’s case was that PVS is not a terminal illness: the brain injury was not killing her, nor was her inability to swallow as long as we fed her. Everyone admits that she was likely to have lived many more years – unless we stopped feeding her. When I said earlier that I doubted that those defending Terri’s “wishes” believed their own arguments, either legal or moral, I meant it in a very specific sense. I am more skeptical of the former, in that I doubted her wishes meant very much to anyone, but were in fact made subservient to the doctrine that no one in his right mind would or should want to live like this, as embodied in the Florida statute that ungraciously invites us to suppose that PVS patients are at an end stage of life. (12) And if we read that Florida law a little closer we’ll find that it allows, nay encourages, withdrawal of such assistance as nutrition and hydration even in the utter absence of any evidence of the patient’s desires, (13) to which the quite logical upshot shall be that those wishes are going to be made our wishes, what we think they ought to have been.

But I do concede that many who believed that “letting her go” was the right thing to do also believed that she was not murdered. That is, they believed two contradictory things at one and the same time: they know perfectly well that the withdrawal of food and water inflicted death by malnutrition and dehydration, yet do not believe in this instance that it was murder.

But why would anyone believe such a thing? And my contention is that they believed it because they were (and still are) in the grip of a mere opinion that amounted to a metaphysical conviction: that she could not be murdered because she was already dead.

*

The evidence, which will be demanded, came with differing degrees of authority and lucidity, but none, I’d venture, with any degree of sophistication. It’s hard to be sophisticated about that of which you know nothing, which here is the phenomenon of human consciousness, and in particular whether it attaches at all to the condition described as persistent and vegetative. (14)

People had their opinions anyway. Nationally syndicated columnist Suzanne Fields, proving herself either invincibly ignorant or a moral idiot, purred that “by most medical evaluations she is brain dead..,” before inflicting on the reader her biblical babble: “We can only see through a glass darkly, and it’s the glimmer of light behind the glass that makes us human.” (15)

MSNBC talk show host and self-advertised Catholic Chris Matthews barked at a conservative guest that Terri’s cerebrum was missing, that that part of her that constitutes her, and which houses her personality, was gone. (16) To which the guest had not the wit to ask: then where is she? Nor to wonder how a Catholic comes by such a gnostic notion of the bifurcation of body and soul.

Reason magazine, in an article entitled “Is Terri Schiavo Dead?”, demonstrated the perils of its own highest virtue by purporting to give us the scientific lowdown on just what a persistent vegetative state amounts to, and which is, in its subtitle - “Eat, Drink, and Vegetate” - in its undisguised disregard for the value of her existence, and in its ultimate conclusion, that she was in all likelihood not even alive, an exercise in exuberant, self-satisfied cruelty: “Her mother, father, and sister—and now Florida Governor Jeb Bush—want to continue supplying her body with food and water until... what? She wakes up? Dies of pneumonia?” They ask and answer: “So is Terri Schiavo still alive? The odds are way against it. It’s time that her long-suffering parents and the grandstanding politicians let her go in peace.” If we ask how one can die of pneumonia when one is already dead, it becomes clear that Reason doesn’t believe its own words. ‘Dead’ must mean something other than the cessation of all bodily life. (17)

Reputedly more disinterested and objective organs like the Annals of Internal Medicine – who are not quite stupid enough to make claims like those above - deal with the problem of Terri’s personhood - and the murder charge - by simply ignoring them, preferring instead as our highest concern the principle of patient autonomy, in light of the unwieldy variety of competing value systems:

Several commentators argued that the central question of the Terri Schiavo case is a struggle between sanctity of life versus quality of life… Unless one adopts the position that sheer biological existence is what is sacred about human life, considerations of sanctity inevitably involve judgments of quality. More important, this dichotomous rendering…begs the essential question of whose notion of “sanctity” and “quality” counts. By taking the autonomy and liberty interests of patients as the central question, the courts preserved the prerogative of individuals to decide according to their own values, even after they have lost the ability to speak for themselves.

In other words, there are so many different notions of sanctity and quality that there is no point in looking at what was done, at what we intended to do, when we removed Terri’s feeding tube. It is assumed throughout, by virtue of the condition, that a PVS patient cannot be intentionally killed, since the affliction entails (once the diagnosis is secure) “no hope of recovery” and loss of the ability to interact “meaningfully” with others. They even quote approvingly the Florida appellate court’s description of “the ultimate issue,” which is whether

Mrs. Schiavo “would choose to continue the constant nursing care and the supporting tubes . . . or whether she would wish to permit a natural death process to take its course.”

Accordingly, the authors adopt the posture dictated by the American Academy of Neurology’s guidelines, which assert rather than argue that

Though this bears a superficial resemblance to a syllogism, it is one from which the only premise that matters is utterly elided, and the only question of any importance never asked. The guidelines do not propose, but pronounce. The authors do not say (because they cannot) that Terri is dead, but simply assume, along with their stupider compatriots in the commentariat, that she ought to be.

Perhaps the most despicable evidence given in support of my thesis was that slap in the face delivered to Terri’s parents by Michael Schiavo when he had engraved on her headstone the very dogmatic claim that his “Beloved Wife” had been

Born December 3rd, 1963
Departed this Earth – February 25, 1990
At Peace – March 31st, 2005
I Kept My Promise

Indeed. I see no reason to doubt that he believed it. If not, he’d have some explaining to do. What else could have nurtured him through the long years of his crusade? Love? Vindictiveness? Maybe, but that’s not my concern here. In the end, his graveyard sentiment – that it is possible to be both biologically alive and metaphysically dead – was no different in kind than that given by the specialists, his capacity for denying reality no more astounding than that of the medical examiner who wrote on an official form that the cause of Terri’s death was “undetermined.” He (the ME) was saying quite clearly, without equivocation, that Terri died because something happened to her a very long time ago. There is no mention of a feeding tube. If he’d thought that its removal had caused her death, surely he would have said so. So he must not have believed it, but instead that other thing – the same thing Michael believed – that she was no longer alive in any meaningful sense of the term. I know it may seem odd, even contradictory, to consider a person essentially dead, and yet find it necessary to take steps ensuring the fact, but, as with any other religion, it helps to believe. Then, all the rest will come clear.

*

The area of ethical and philosophical endeavor this belief occupies actually goes by a name. It’s come to be known as personhood theory (19), the exercise of the discipline requiring that its more elite practitioners put their higher functions to work passing judgement on those without it. Though it comes in different formulations depending on the source – from Michael Schiavo’s headstone inscription to a reporter’s ignorance, from a medical examiner’s denial to a magazine’ s disdain – the theory’s core doctrine remains the same: if one is to be eligible for personhood, a demonstration of consciousness must be forthcoming. The fact that the doctrine bleeds out over many years in journals of medicine, philosophy and law rather than being hammered out in some kind of secular conclave with priests of the professions all gathered in one place, their collective approval bestowing the seal of infallibility, makes the holding of it no less an article of faith. How does the conviction, in the absence of evidence, that Terri Schiavo was dying, or that she was for all intents and purposes already dead, or that she was no longer fully a person, require any less a leap of faith than that required to believe in the hypostatic union, or that there might be angels among us, or that Terri was possessed of a soul with an immortal destiny, which belonged to her, of which no man may presume possession, or of its disposition to know with certainty anything about? In either case, we are dealing with the operation of invisible faculties, and where the dogmatic Christian defends Terri’s personhood out of humility, the relativist demurs by professing certainty. The Christian will say, “I don’t really know what’s going on ‘in there,’ while the relativist pronounces, “There is no ‘there’ there.” The first will say, “She must be a human being, for I can’t see what else she might be,” to which the relativist objectively counters, “That which makes her human has taken leave; let the rest of her go in peace.” And should the Christian ask, “If her humanity is not ‘here’, then where did it go?” he is told, “That’s a matter of opinion, and yours doesn’t count.” It then becomes a fair question to ask: Who’s the dogmatist?

In my experience it’s been the kind of people who object to what was done to Terri who fall under this peculiar opprobrium. They are those who would obstruct scientific progress and medical beneficence by complaining about embryo-destroying research in the quest for cures, and who to this day indulge an impassioned and obstinate hatred for “a woman’s right to choose.” It is a term of obloquy to those who hurl it, carrying the imputation that those fitting the description are in thrall to a theocratic impulse that would impose on the public the doctrinal tenets of a private faith. Thus, when the authors of the Annals article complain about the multiplicity of “values” abroad in the land, when they ask - “whose sanctity of life, whose quality?” – I suspect they are really complaining about only one. When they rejoice in a broadminded acceptance of the many, they do so out of fear of the one. Everyone wins, they say, because no one is victorious, even as they rise in triumph over the body of Terri Schiavo.

Not once, by the way, in that Annals article did the authors trouble themselves to trifle with the definition of a human being, with a consideration of the concept of ‘person’, or of whether such is possessed of a psyche or a soul, or of both or neither, avoiding at all cost that question even Pilate had the temerity to ask: “What is Truth?” – nor wondering if the attempt to answer might be something we owe the afflicted if we are truly to deliver them justice. Instead we are instructed that the only objective position is not to have one; we are asked to set aside our purely private opinions, which may or may not be true, to bow down to another that most certainly is – the principle of personal autonomy – in which we defer to each man as his self’s own sovereign, the demi-god of his bodily domain, with the assurance that this openness to all decisions is less a prescription for moral chaos than adherence to any one.

In the Annals article (and virtually all others encountered), the whole question of personhood is begged into non-existence. The methodology for this is pretty straightforward. First, describe the symptoms accompanying a firm diagnosis of PVS (the description is not pretty), of which two are definitive: the patient shows no awareness of himself or the world around him, and there is no hope of recovery. This condition is then to be understood (even though he’s not dying) as a terminal or end-stage of life because: the patient shows no awareness of himself or the world around him, and there is no hope of recovery. Nutrition and hydration, a sustenance normally considered natural, humane and mandatory, may in this instance be called artificial, burdensome and optional because…the patient is unaware and there is no hope of recovery. Therefore, this means of prolonging life may be withdrawn so that the patient can die “naturally” because…the patient is unaware and, etc.

And that’s all there is to it. The trick is done and the doctrine imposed. Terri’s claim to personhood is voided by evasion, and her autonomy protected by first establishing that she really has none. The fact that the doctrine is remarkable for its lack of definition and its widespread public acceptance makes it no less of one, and there were really only two at stake. Some have framed the conflict in broader terms as a war between the cultures of life and death, and I suppose that’s accurate enough; but I only want it noted here that both require faith in a numinous reality, and that only in the path of one is death sure to follow after.

*

Beliefs, like ideas, have consequences. The whole of my contention has been that an evil statute found a home in Florida law not because we have a doctrinal allegiance to a notion of autonomy, but because the doctrine is a necessary support to a more fundamental belief (call it the deposit of faith) about what we cannot know: the quality of the mental life of people like Terri Schiavo. The law is not there because we doubted a person’s right, within limits, to have a significant say in his own medical care. It’s there because somewhere along the line we decided that people in such a state probably ought not to be alive, and that if we were to facilitate their ending it all, we’d need a way to justify it. Hence, a refinement of guardianship laws granting to a proxy power of life and death over a catastrophically disabled person, all under the guise of fulfilling that person’s wishes, which invariably turn out to be fatal.

Human psychology seems built in such a way as to demand that we justify what we do. This was the function of the autonomy farce played out in courts, medical journals, and the major media. This is the reason Terri was never given a swifter and more merciful lethal injection, for it would have lifted the veil of pretense that she was being allowed to die a natural death, rather than having the event forced upon her. As we have seen, the conscription of language into service of the fraud being perpetrated is essential. One of the more egregiously typical and annoyingly persistent mantras was that voiced by Michael Schiavo’s lawyer, George Felos, upon learning in 2003 that Governor Bush, under authority of a law passed by the legislature, had ordered Terri’s tube reinserted:

It is simply inhumane and barbaric to interrupt her death process. Just because Terri Schiavo is not conscious doesn’t mean she doesn’t have dignity. (20)

That sacred death process, more sacred in our day than life itself. “Death with Dignity” is surely one of the more malign euphemisms to have entered the language, taking its place as a supporting pillar in the edifice of the current death cult right alongside “termination of the products of conception” and its historical predecessor, “life unworthy of life,” the frequency of its incantation attributing to it a magically persuasive power. It is one of the primary rhetorical props to the whole façade of justification, for when the deed being contemplated is genuinely evil, vice will always pay its homage to virtue. While trying to cajole us into a right way of thinking, it must offer a perversion of genuine thought, presuming as it does that the quality in question attaches to an event rather than a person. A closer look at Felos’ statement reveals this. When he says, “She has dignity,” he means that she has it as long as she’s dying. Interrupting that process that she might live is an insult to her dignity. This can only be true if there is something reprehensible, something inherently repugnant, about the state in which she finds herself; that to exist in this fashion is to bear the burden of an unending humiliation.

Now, we will sometimes speak of people as having been “stripped of their dignity,” as when we denote what the torturer does to his victim, or the rapist to his. But the sense in which we mean it is a fleeting one, more an expression of empathy for the victim than a literal assessment of his worth, since we know in truth that we are really referring to the assault on one person by another in an attempt to humiliate, and that the true loss of dignity has been incurred by the torturer and the rapist, not the victim. That is, a man can lose his dignity by virtue of his own acts. Should they be sufficiently depraved, he can strip himself of it, even to the point that society might judge him no longer worthy of life itself. But that more lasting notion of dignity, the one claiming that you possess it by virtue of your very humanity, cannot be taken from you by any external force, be it by man or any of the multitude of calamities that plague our lot on Earth.

That the concept of death with dignity has gained such wide purchase in the popular mind is further remarkable for the very obvious slippery slope it necessitates. For if dignity or its absence is described by the condition in which we find ourselves, its reach cannot be limited to consciousness. If the ability to interact “meaningfully” with others is its measure, then the body must be taken into account as well, if we hold to any remnant of the quaint concept that a human being is an inextricable unity of body and mind. Suppose a man were paralyzed but conscious, unable to do anything but sit in his chair, breathe, and stare straight ahead with open eyes that seem to register nothing. Except that we know, should his wife ask – “Do you love me?” – that he is able to blink once in affirmation. But wouldn’t he interact more “meaningfully” if he could also speak the words? And yet more so if he could raise his arms to embrace her? And then approach the fullness of meaning if we could but return to him full use of his faculties, allowing him to put the physical parallel to his spiritual pledge by consummating this love in the marriage bed? Beginning from this last state of good health and moving backwards toward the first, he is gradually relieved of his physical integrity until left with only his mind. Has he lost his dignity, or some portion thereof? If so, how much? And how much is too much, so that we would feel certain in saying, “He has no more dignity in living”? From this state most of us would recoil – “I would not want to live like that” – being waited on hand and foot, and presenting to all we encounter an object of pity. A man can lose his body and keep his mind, or lose his mind and keep his body. Which is the greater indignity?

I ask because it has become very much a habit of the modern mind to see mental or bodily incapacitation as a loss of dignity. The cause is commonly advanced that people in great physical agony ought to be put out of their misery should they so desire; such suffering is another of those humiliations we should not have to endure, and a useless one at that, so that the line drawn at awareness (itself a thing of degrees) begins to seem more arbitrary the more one thinks about it. The conscious man without use of his body is likely to suffer a mental anguish unknown to a Terri Schiavo. He perceives quite keenly the supposed indignity thrust upon him. Is the indignity real, or a creation of his mind, wrought by despair at having been so cruelly deprived? In the event our sufferer is devoid of awareness, like Terri, is the indignity real, or a creation of our minds, wrought by the lens of horrified pity through which we view her?

I must keep to the latter in either case, having laid down the principle that a man can be deprived of his dignity only by an act of his own will, and never by an external agency. Such an act might be provoked from the outside, as when a man commits apostasy on pain of torture or death, or a soldier displays cowardice under fire, but otherwise no mere torment inflicted by a persecutor, or injury by the enemy, or anoxia by circumstance, can diminish that essential light that makes you, you.

I once gave tennis lessons to a fellow, a Vietnam vet, who also happened to be in a wheelchair. He was in it all the time except, I presume, to go the bathroom or to bed. His arms were strong and he could haul himself out of it if need be, but for most of every day it was his constant companion and his second place of residence. He could not have sex with women. By that time I’d had the first of two daughters, and supposed that he would never have any. As I watched him pushing madly against the wheels to chase down the ball I’d hit him, I was very glad not to be like him, to have the full use of my limbs (among other things) so that I could enjoy playing the game as it was meant to be played, and at a much “higher” level. But I must confess that, in spite of the enormous vanity pervading my character in those days (the kind of internal act of will that can diminish one’s dignity), it never once occurred to me that I somehow possessed more dignity than he, or might be found worthier in the sight of God and man for the mere fact that my legs worked. In truth, I’d have felt very bad to have entertained such a thought; even its far approach would have been cause for shame, so hideous a phantasm it is. In further truth, it is at least quite likely that his dignity, conceived as a measure of virtue, far surpassed my own. It is entirely possible that, in light of his limitations, humility was more his friend while an enemy to me. In confronting an adversity I shrank from imagining, he possessed a quality of character that compelled him not to yield to the bitterness engendered by life’s unfairness, to persevere in the face of it, and to think life still good and worth living. In short, to lay down a law on top of a principle: an incapacity does not an indignity make.

Really, this modern messiness of mind that sees in all physical and mental suffering a shroud draped over our humanity, in any kind of deprivation a subtraction of being, in the end becomes quite tiresome. It’s not as though – should I find you in the drooling, vacant-eyed, final stages of Alzheimer’s, helpless of body and bereft of mind – I’m going to whisper to another, “Poor fellow, he’s lost his dignity.” And it really is not the case – should the bite of a wild animal infect you, so that you depart in the screaming agony of a death by rabies – that I will observe to the fellow next to me, “You know, he might have handled that better.”

We know that the dying man in the grip of intractable pain can tell us of the intimacy he now has with a new kind of life, one in which he longs for another without it, sometimes for death itself. And often we see no purpose to it. What possible dignity can there be in drinking such a cup to its last dregs? What is the point in insisting on misery when we might offer mercy instead?

For one thing, he is alive, even in his suffering. True, his mind is concentrated, his focus narrowed. He is lost to pleasure and all the finer enjoyments that make “life worth living.” And yet I don’t think his life to be of less worth only because he is suffering, or that these moments are of less importance to his destiny than any others he holds so dear. They may in fact be the most important of all, the final fire in which he is forged, but of course this last can only be justified – unless I am able, in the absence of Revelation, to intuit something about the necessary place of suffering in the order of the universe, which I am not – by reference to Christ’s own, whose embrace of it clears the path to a world in which it has no place. Beyond that, I cannot justify it. At which point arises the ritual accusation that this is a religious prejudice binding on no man who does not share it. And I agree that it is not binding if it is not true, another area of inquiry not shared by the sceptic. But I would also remind him that his own conviction, that suffering lacks purpose, is likewise an assertion of ultimate belief about the nature, duty and destiny of man, and that in its rejection of suffering’s redemptive possibilities, is quite intentionally and virulently anti-Christian - that in the end he is simply preferring his own religion to mine .

But yours (will come the protest) must be imposed, while mine requires no such thing. Yours is a commandment, while mine is an option. Yours shackles all men to one way, while mine offers every man his own. Can’t you see how much more equitable, tolerant and merciful is the former?

Yes I can. Doubt will always seem more equitable than certainty, because its apparent lack of doctrine makes no demands, and it will always seem more merciful in those cases where it sees no meaning. The doubter recommends no commandment lest he be seen as lacking in compassion, and incurs no obligation save in the proffering of an option. He is the neutral arbiter, enhancing a victim’s dignity by reminding him of his choice, yet bids the protest of faith keep silent, lest it remind him of a purpose. To which my only protest must be that I would never claim it is an easy thing to tell a man in his final agony that he should prefer the option of suffering over a gentle death by suicide or proxy murder, but where the believer sees a great difficulty in his duty, how is that the doubter sees no distinction at all? You can nurture a man on nihilism in his last moments if you wish, but it would be more honest not to say that you were doing him any honor or great good, since it is the determination of good and evil that you have been most fervent to avoid.

The sceptic might further pretend at this point not to know what is meant by the concept of dignity advanced thus far – as a thing of which one cannot be deprived, which manifests itself most fully in its owner’s breadth of virtue, and maintains its integrity even in the midst of great suffering – or how it might apply to someone like Terri Schiavo. Though she probably did not suffer in body, she certainly had no use of it, and those who have not had to endure it should not require the same of others. Suffering is only an alternate humiliation, and that she was spared its ravages was the result of quite literally having lost her mind, of quite obviously being deprived of a mental life and hence of a personality to show it forth. And though she was incapable of doing any wrong, neither could she do any good thing, to whom the concept of virtue meant nothing, requiring in its practice the exercise of will, of which she seems to have been fully devoid. Furthermore we really do have grounds for treating the mind differently than we would the body, for the former is the means by which we know our humanity. It lets in the light of the world and in turn shines out to greet it. Please, what dignity can possibly be found in keeping alive a body in which that light had so clearly gone out?

Well, I’ll be happy to give an answer, though it will not satisfy, and to make explicit what seems so inaccessible - even though everyone used to know it - before the understanding of it disappears from public practice and perception. As I have accused the other side of presuming much - everything, in fact, of any importance – about that which they cannot know, I will confess to a presumption of my own. For I have assumed all along a merely opposite premise, that Terri Schiavo was a person, that her life was a good in virtue of that fact, and because it was good she had intrinsic worth. If you are human, it is good that you exist. To have life is to have dignity. Would we say of a newborn child that its life was not good, or that it lacked a dignity before which our consciences should stand in awe, and at the ready to protect against all harm? It will not do to point out that Terri had gone backwards in time and would have remained perpetually a baby, if not something even less, while an actual newborn is only temporarily so before moving on to his full potential; that Terri, in fact, resembled more the anencephalic infant who lives insensate a while before dying.

So then we must believe that a baby’s life is not a good in itself, unless it will become something else later on? And that he cannot possess the dignity of personhood, imposing on us the obligation to protect, unless his life meets some immeasurable standard of quality (which is another way of saying that he will not become something else later), even as you know that any us of could die tomorrow?

The people who would have us think like this really need to get their stories straight. We have George Felos, for example, praising the preservation of Terri’s dignity in the process of her dying, while the Annals article assesses her in malevolent derision as a specimen of “sheer biological life,” granting her a moral status about equivalent to that of an earthworm’s. If that’s all she was, an organism of merely instinctive functions, of reflexive movements no more purposeful than those of an amoeba, then how could there possibly have been any dignity in her dying? If you want to kill a woman because you no longer see the point of her living, or think that she’s somehow less than human, or already dead, or no longer a person because she’s lost her mind, just say so. But stop the inhuman pretense that you’re “allowing her to die” when you know perfectly well that dead people don’t die and only the living must be killed; or that you’re doing her a mercy or conferring a dignity on someone for whom they have no meaning, because you can offer these things only to a person. Neither should you care whether she’s given a decent burial, thrown in a ditch, or fed to the vultures, because the respect owed the body as a former instrument of the soul derives from an antiquated religious notion that the two were once united in a person.

Or perhaps some prefer the truly bizarre religious faith implied in Michael Schiavo’s inscription on Terri’s headstone, that the soul can depart for other realms while the body remains alive on earth, compelling our hospitals to treat, and our courts to dispose of, a new kind of human patient heretofore unheard of outside the precincts of Hollywood horror: the zombie.

*

Terri Schiavo was alive. Because she was alive, she was a person, and because of this she had dignity. Her personhood was her dignity, and in both was her reviled “sanctity of life.” It could not be measured by others, but only acknowledged. It did not reside in what others thought of her, but in what it was, and that was inviolable. That the spark of humanity is sufficient to dignity is true only because it is given from above. As we are finite beings, our worth cannot originate from within, cannot be of any worth at all, unless conferred by the love of an infinite Other, “from whom all good things flow.” If it begins with our coming into being, and vanishes with our going out of it, then it was never there at all. Immortality is its mark. If virtue makes it more manifest, it is as the light of a flame that burns. First there must be the flame. And in Terri’s last state, her flame was the impassible innocence to which circumstance had delivered her, susceptible to corruption no more.

Back in 2005, about five days into Terri’s dehydration, a lady wrote at a website: “I am sick at heart, and having trouble understanding why God is allowing this to happen.” But He always does, doesn’t He? In the moment, it hardly quells grief to be reminded that, whatever they did to her, they couldn’t touch the only thing that mattered, the only thing her killers were convinced did not exist. And it probably offered little comfort when another gentleman reminded us, through the words of Thomas Moore, of a kind of love that seems to be vanishing from our common life, and might not be coming back for awhile:

Believe me, if all those endearing young charms
Which I gaze on so fondly today,
Were to change by tomorrow and fleet in my arms
Like fairy gifts fading away,
Thou wouldst still be adored as this moment thou art,
Let thy loveliness fade as it will,
And around the dear ruin each wish of my heart
Would entwine itself verdantly still.

The truth is that no one knew the truth of Terri Schiavo. It was her secret, and God’s. Some thought they saw proof in her physical presence of a mental absence (as if it were any of their business), but none were immune to wondering. After it was all over, and our love of mercy had put her down for good, I wondered as well, with equal credibility but less certitude than was claimed by those who announced her utter absence, the disappearance of her soul and personhood in those last years after the world was taken from her, whether she still had friends, and recognized them as such. Maybe they were only the shapes of shadows defined by light. Even if, by the end, she was blind (as we are told she must have been) and the shadows gone, they came to her daily and kissed her on the cheek, stroked her hair, and spoke to her, and maybe she heard them from afar, as a baby in the womb hears mother’s voice, and knew they were her friends because we all know when a thing intends good to us. There was no agony of waiting because time meant nothing. Time was her friend, too, the fluid in which she swam, as do we in our dreams. The soul, no matter the state of its temple, needs love, which is its life. I like to think that God reached down into the womb of her unawareness and fed her daily, bathed her in it every night, while you and I pursued the things of this world, wrung our hands over her pitiable fate, and, glorying in our own ‘awareness’, wondered if she should really be here.

Some have said she was only an “issue” to us, another pro-life outpost in the culture war against the righteous forces of “choice”, and against whom we seem compelled by a purely private, otherworldly, and fanatical delusion to take up arms. But to me she was just a girl, a woman, who could have been my daughter, my sister, my friend; who was once as ‘normal’ and beautiful as you, and who wanted the same things in life, but whom misfortune befell, and we abandoned her to it

I asked then of this child of God – who now knows more than all the defenders of her autonomy put together – that in her innocence she would pray for me, and I have never stopped asking, and never will.


(1.) Although M. Schiavo is referred to in several court documents as Terri’s surrogate, and though he had right of say to the very end over who could visit his wife and for how long, I am not using the terms “surrogate”, “proxy”, or “guardian” in reference to Michael Schiavo in a strictly legal sense. As Lydia McGrew points out in correspondence, “The popular perception that Michael had the legal right or was given the legal right to make the decision for her was incorrect. People thought that and said it all over blogs and elsewhere, but it just wasn’t correct. The legal machine you describe took the process over even beyond that - into a realm where family relationships didn’t even matter at all.” What she means is that, though M. Schiavo was the original petitioner for the removal of Terri’s nutrition and hydration, at some point Judge Greer became Terri’s de facto guardian, solely empowered with deciding her fate. My use of the above terms acknowledges the public perception that Michael was indeed pursuing an end with which Greer was in perfect sympathy, and in whose testimony in the case he put great credence, and at whose standing as Terri’s ‘husband’ he never once raised a judicial eyebrow. If the public perceived them as two heads of the same creature, they saw what I saw.

(2.) “What would Terri do? Family locked in struggle over brain-damaged woman’s fate.” Current Events. BNET. <http://findarticles.com/p/articles/mi_m0EPF/is_7_104/ai_n6256748>

(3.) Smith, Wesley J. “The Rule of Terri’s Case Strikes Again.” The Weekly Standard. 30 Jan 2004. <http://www.weeklystandard.com/Content/Public/Articles/000/000/003/669hvjvj.asp>

(4.) Pfeiffer, Eric. “Odd Felos.” National Review Online. 30 March 2005. <http://www.nationalreview.com/comment/pfeiffer200503301030.asp>

(5.) “Terri Schiavo Autopsy Released.” The Smoking Gun. <http://www.thesmokinggun.com/archive/0615051terri9.html>

(6.) Joshua E. Perry, JD, MTS; Larry R. Churchill, PhD; and Howard S. Kirshner, MD. “The Terri Schiavo Case: Legal, Ethical, and Medical Perspectives.” Annals of Internal Medicine. 143 (2005): 744-748. <http://www.annals.org/cgi/reprint/143/10/744.pdf>

(7.) Kollas, Chad D., and Beth Boyer-Kollas. Journal of Palliative Medicine. 9.5 (2006): 1145-1163. <http://www.liebertonline.com/doi/abs/10.1089/jpm.2006.9.1145?prevSearch=allfield%3A%28Terri+Schiavo%29&searchHistoryKey=>

(8.) Miller, Robert T. “The Legal Death of Terri Schiavo.” First Things. May 2005. <http://www.firstthings.com/article.php3?id_article=191>

(9.) “Schiavo Under the Law.” Correspondence. First Things. Oct 2005. <http://www.firstthings.com/article.php3?id_article=236>

(10.) That this case did turn on the “peculiar moral notion” of an individual judge, George Greer, see again, Lydia’s article as regards the court ignoring its own “clear and convincing” evidence standard, and also re the original Browning case (quoting Lydia) “that pushed the statutory law in the direction it went…[which] was clearly a matter of the court’s using its own ‘moral notions’ to find something new in the Florida Constitution.”

(11.) The Multi-Society Task Force on PVS. “Medical Aspects of the Persistent Vegetative State— First of Two Parts.” The New England Journal of Medicine. 26 May 1994: 1499-1508.

<http://content.nejm.org/cgi/content/abstract/330/21/1499>

(12.) The 2008 Florida Statutes. Civil Rights. Health Care Advance Directives. 765.306 <http://www.flsenate.gov/Statutes/index.cfm?App_mode=Display_Statute&Search_String=&URL=Ch0765/SEC306.HTM&Title=->2008->Ch0765->Section%20306#0765.306>

(13.) The 2008 Florida Statutes. Civil Rights. Health Care Advance Directives. <http://www.flsenate.gov/Statutes/index.cfm?App_mode=Display_Statute&Search_String=&URL=Ch0765/SEC404.HTM&Title=->2008->Ch0765->Section%20404#0765.404>

(14.) “…said Dr. Peter B. Dunne, chairman of the department of neurology at the University of South Florida, who has not examined Schiavo: ‘Oh, my gosh, they may smile, they may frown, they may cry, but it’s not related to any particular stimulus,’ Dunne said. If someone is in a persistent vegetative state, Dunne said, ‘it looks as though the person knows what’s going on, but they’re really not... they can smile, frown, etc., but it’s really not related to any kind of stimulus. It may just be a reflex.’

“This is what makes persistent vegetative state so agonizing for family members, said Cranford, the Minnesota neurologist. ‘All persistent vegetative state patients have the appearance of interaction with their environment,’ he said. ‘It’s a scary, scary, scary syndrome.’ “

May be? Scary? They went to medical school for this.

Krueger, Curtis. “Understanding Terri Schiavo.” St. Petersburg Times Online. 28 Oct 2003. <http://www.sptimes.com/2003/10/28/news_pf/Tampabay/Understanding_Terri_S.shtml>

(15.) Fields, Suzanne. “A Right to Live, A Right to Die.” Townhall.com. 27 Oct 2003. <http://townhall.com/columnists/SuzanneFields/2003/10/27/a_right_to_live,_a_right_to_die?page=2>

(16.) “Hardball With Chris Matthews for March 23rd.” MSNBC. Transcript. 24 Mar 2005. <http://www.msnbc.msn.com/id/7286474/>

(17.) Bailey, Ronald. “Is Terri Schiavo Dead?” ReasonOnline. 23 Oct 2003. <http://www.reason.com/links/links102303.shtml>

(18.) I have dealt with this analogy at length elsewhere:
Luse, William. “Let Live or Make Die: Terri Schiavo, Christopher Reeve & the
Right Not to Be Killed.” Touchtone: A Journal of Mere Christianity. March

2005. <http://touchstonemag.com/archives/article.php?id=18-02-040-f>

(19.) Smith, Wesley J. “Waking From the Dead.” First Things. Oct. 2003. <http://www.firstthings.com/article.php3?id_article=528>

(20.) Mohler, Albert. “A Victory for Life in Florida: Will it Stand?” AlbertMohler.com. 24 Oct 2003. <http://www.albertmohler.com/commentary_read.php?cdate=2003-10-24>