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From the March, 2005
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Let Live or Make Die? by William Luse

Let Live or Make Die?

Terri Schiavo, Christopher Reeve & the Right Not to Be Killed

by William Luse

Not long after a Florida judge granted Michael Schiavo permission to have the feeding tube sustaining his wife, Terri, removed, I went round the room of a night class that I teach trying to find out who among the students had found a topic for their research paper. One young lady had chosen euthanasia. Was she for it or against it? Against it. The passive form, the active, or both? Umm, she hadn’t read about that yet.

It’s remarkable how little they know about subjects on which their opinions are vehement. I gave her a couple of examples to illustrate the difference between active and passive, then asked, out of sheer curiosity, if she or any of the others had heard of the Terri Schiavo case. None had. This struck me as odd, I said, since it was happening right down the road in St. Pete. Oh yes! A couple of them had heard of it, but were not familiar with the details. So I laid those details out.

Should They Kill?

“ They’re going to starve her to death,” said the euthanasia girl, Jennifer, which shows that you need not be well read to have an unerring nose for the truth. And they seemed genuinely aghast when I told them it was written into Florida law that nutrition and hydration were to be considered “extraordinary” and unnatural means of prolonging life.

I suggested to Jennifer that she might want to look up the story of Nancy Cruzan to see how a similar case had played out, and that of Karen Ann Quinlan to see how wrong a medical certainty can be. Her appetite seemed whetted, but you never know. In the end, it’s a lot of work they’d rather not have to do.

In another class afflicted with the same assignment, I repeated the process. When I got to a girl in the back, she too had chosen euthanasia. For or against? “For,” she said emphatically, “active euthanasia.” She had done some reading, so I went straight to the issue, and asked if she was familiar with the Schiavo case. Not real familiar, she admitted, but she’d heard of it. Once again I explained the circumstances, and then asked (her name was Sarah, I think), “So . . . should they kill her?”

Believe it or not, this phrasing, this mere statement of fact, shocks. It shocks my students because they’re not thinking in terms of killing, but of “letting her go,” of doing some mercy. Sarah’s eyes widened a little.

“Is she in the process of dying?” she asked. She had done some reading.

“I don’t think so,” I said. “She appears to be in the process of living, with the help of a feeding tube.” When I added that certain therapists were of the opinion that she could learn to take food from a spoon (a fact I consider irrelevant), but that the judge had denied them the opportunity to teach her, in his apparent determination that the tube be pulled sometime in October, her eyes began darting about, looking for another way.

“But if removing the tube would stop her suffering . . .”

“She’s not suffering,” I said, “as far as I can tell. I’ve never seen anyone suffer less,” adding that, by the term most beloved of those who would speed her on her way—that she existed in a permanent “vegetative state”—her capacity for suffering was far less than ours.

I let her indecision become lost in the noise of remarks offered by others (“Pull the plug—she’s costing too much” was typical), and Sarah seemed glad of the reprieve. I think (and I’m guessing again, but it’s well-educated) she still wanted Mrs. Schiavo “let go,” but would have to work on another way to justify calling it that.

Will She?

In the one class, I sensed much sympathy for Terri; in the other, not so much. This went on for a couple of weeks, the same discussion ensuing with a number of students.

One was a grown woman who works as a nurse, wore her uniform to class, and was all in favor of disconnecting Mrs. Schiavo’s feeding tube. As I questioned and she answered, my thoughts for some reason turned to the case of Christopher Reeve (we were talking before Mr. Reeve’s death from heart failure), and a measure of light came to me in the form of a question: “Suppose tomorrow Mr. Reeve declared himself sick of it all and asked his wife, or a friend, or a doctor, or you, madam nurse, to yank that tube from his neck. What would you do?”

She seemed taken aback. Reeve had not been part of the conversation. Where had he come from? She blinked rapidly, her back stiffened, and she stared past me into some distance where her thoughts could gather.

“Please, ma’am,” I pressed after a moment. “He wants his ventilator turned off. Will you do it or not?”

“No,” she finally replied.

“And why not?”

She couldn’t answer. So I offered assistance. “Because it would be murder?”

“I think so. Yes.”

But, I reminded her, she’d been arguing for Terri Schiavo’s “right to die”—more precisely, for Michael Schiavo to exercise it on her behalf—though Terri herself had expressed no such desire. Mr. Reeve would now like to exercise his. How would it be murder?

She thought some more.

“Is it because he’s conscious and has all his wits about him?”

“Yes,” she admitted, though I’m not sure she would have without the prompt.

“So even though Reeve has asked for it, to accede to his wish would be murder. And even though Terri has asked for nothing, to accede to Michael’s wish for her would not be murder.”

She nodded, but with ebbing enthusiasm. Whatever happened to the freedom of choice, I asked, the principle upon which she’d founded her argument? Reeve is not allowed the use of it, while Terri would have it thrust upon her. She said she’d have to think about it. I then asked her to be honest. Was it not her opinion that Terri Schiavo was, because of the severity of her mental disability, as good as dead, and that to disconnect her feeding tube would be an act of “letting go,” of her natural dying?

And, in saying yes, she was indeed honest.

Though some might say that these are callow college kids, their minds ill-formed, their judgments arrived at through instinct and prejudice, I recount these stories because, after perusing the works of those normally considered “experts” in these affairs, I find that the students end up in the same place as the experts but with less circuitry of thought. They are less sophisticated, less pretentious, and unencumbered by post-graduate letters trailing after their names. They are, even in their vehement certainty, more innocent, and capable of change. I’ve seen it happen.

Quality Deaths

Among the experts, a consensus has formed. Since 1990, when the Supreme Court ruled in the case of Nancy -Cruzan that food and water may be withdrawn from hopelessly “vegetative” patients, our hospitals and nursing homes across the nation have taken a fairly consistent ethical policy with regard to these “end of life” decisions.

Many have died behind the scenes without fanfare or protest. Every state, Wesley Smith wrote in First Things, now lets “profoundly cognitively disabled people to be dehydrated to death by withholding or withdrawing tube-supplied nutrition and hydration, as long as their families consent.” They are allowed to die, he asserted, not “because supplying food and water is medically inappropriate, but because of judgments about the quality of these patients’ lives.”

This policy is embraced by Arthur Caplan, a prominent ethicist with letters after his name from the University of Pennsylvania, who enthused on MSNBC.com that “the good news is that the US Supreme Court looked at these issues a decade ago in the case of Missouri’s Nancy Cruzan and affirmed the right to stop medically supplied food and nutrition to patients in permanent comas. There is every reason to think that the newly enacted Florida law is unconstitutional and will be overturned.” (He was referring to Terri’s Law, enacted to save her life by the Florida legislature in emergency session.)

Two experts, highly educated, thoughtful (we must presume), with two different takes on the same decision that gave birth to the current policy. Mr. Smith believes that those who would “let Terri go” see no value in her continued existence. He believes we have entered “the surreal world of ‘personhood theory,’ under which people diagnosed with permanent loss of consciousness or the ability to meaningfully think and communicate with the world are denigrated as ‘nonpersons.’”

It’s hard not to agree with him when Dr. Caplan, defending the decision to withhold food and water from Terri, describes her as “ almost completely incapable of any thought, feeling or mental activity.” I emphasize his words because Dr. Caplan tends not to. That Terri’s mental life might make her unworthy of “mere” life rides beneath the surface as a supposition, when it is in fact the very question begging an answer. Being unconscious makes her life not worth living, or preserving, although the experts rarely put it that way (unlike some of my students).

Instead, like Dr. Caplan, they tend to frame the matter in terms of patients’ rights, of one’s “right” to die, of the dignity conferred therein on the sick and dying, and of the usurpation of judicial authority by Governor Jeb Bush and the Florida legislature in their “bone-headed” decision to save Terri’s life.

Her Fatal Condition

But what exactly constitutes her “fatal condition,” the thing that is killing her, or would kill her were she not helped? Is it her “vegetative state” or her inability to swallow? Dr. Caplan cannot say the former, or he would be guilty of holding that those suffering a severe mental disability for which there is no hope of remediation become eligible for execution, and I doubt he would concede that execution plays any part in the matter. He must therefore hold to the latter, that her inability to swallow amounts to a fatal condition that, if left to its natural progression and not artificially frustrated by a feeding tube, would result in death.

There is some evidence that this accurately renders his line of thought, for in response to some remarks made by the pope in March of last year—that assisted nutrition and hydration are means of treatment to be considered “natural,” not “medical”; “ordinary and proportionate,” not “extraordinary and extreme”—Caplan, somewhat incensed, asserted that “patients refuse life-sustaining treatment all the time in American hospitals. Jehovah’s Witnesses say no to life-saving blood transfusions and their subsequent deaths are not treated as suicides. Dying patients request that ventilators and dialysis machines be turned off and no one considers doctors’ decisions to honor these requests cruel or a form of euthanasia. So why make a special case about receiving chemicals through feeding tubes?”

Why, indeed? Patients on dialysis are suffering from a terminal ailment: kidney failure. Patients on ventilators are suffering from a terminal inability to breathe. (That a Jehovah’s Witness refusing a blood transfusion is not treated as suicide begs the question of whether it ought to be so treated.)

When the dialysis machine or ventilator no longer provides relief to the patient, that is, when its deployment is merely a holding action in a losing battle of attrition against the onset of death, I can assure Dr. Caplan that it is settled Catholic, and hence papal, teaching that the patient has the right to say, “No more.” So he must see Terri’s inability to swallow as a terminal condition akin to kidney failure or the inability to breathe, and her feeding tube as a perfect parallel to such devices as dialysis machines and ventilators.

Which brings us to the question: Is Terri’s inability to swallow in fact a terminal condition? That her “vegetative” state is not this condition can be sworn to by any and all medical experts. They will readily admit that she could live a long time in her present state, as Nancy Cruzan before her might have, had her tube not been taken away. If her condition is not terminal, how, on Dr. Caplan’s grounds, can she be allowed to die?

He Wants to Live

And so I’d like to return to the case of Christopher Reeve, which I find instructive, for I never saw any pained editorials in the press or heard any incredulous chorus of experts bemoaning the fact that he preferred living to dying.

In short, is Terri’s inability to swallow the same thing as Reeve’s inability to breathe? How does each situation differ from, or resemble, the other? The most obvious difference is that one is conscious, the other barely so (or so we are told). The most obvious similarity? One is kept alive by a tube that forced air into his lungs, the other by a tube that forces food into her digestive system. Are they in fact the same?

On the assumption that we already know the other side’s answer, let me give mine: No, they are not. One is the loss of an involuntary function, the other of a voluntary function. One is thus a fatal condition, the other is not. Under normal circumstances, I cannot breathe for you, but I can feed you. Some will not admit this difference, but I don’t see how it can be other than of the essence. If it is not, the argument on Terri’s behalf is lost, and we must delay Michael’s request no longer. Mrs. Schiavo’s feeding tube is no different from a spoon held to her lips, as to a baby’s, and that’s why I believe that the possibility that she might be taught to take food from a spoon is a matter of no relevance.

I think (and many will not like this) that a stronger case can be made for letting Mr. Reeve go than for Mrs. Schiavo. I will elaborate in a moment, but the only thing that gives us pause is Reeve’s awareness. If he were lying in a permanent coma, interested parties would be lining up, and the courts swinging into action, to “relieve” him of his burden, possibly even against his wife’s wishes. Is his life more valuable than Schiavo’s is? Before we answer, we might want to ask her parents.

Some might object that the spoon held to the baby’s lips is impermanent, while the feeding tube is not. But we must remember that Reeve, too, must be fed by an outside agency. Let us then suppose that he could breathe on his own, like Terri, yet needed to be fed by spoon—-permanently. Who among us would take away his spoon? But, come the protests, he would still be able to swallow while Terri cannot. All right, then let us suppose he cannot swallow and must be fed by a tube. Now will you take away his tube?

If the answer is no, then I ask a further question: If Reeve lapses into a state of unconsciousness, a coma, but one medically determined to be not fatal in itself, a state that might persist for years, would you then be otherwise inclined?

The Crucial Difference

Those answering in the affirmative refuse to draw a distinction between the ventilator and the tube. But I maintain that the better parallel is not between the two forms of technology, but between Reeve’s nervous system and Terri’s digestive system, the latter of which works while the former does not. By a fatal condition I mean one that will not suffer amelioration by treatment. Such a circumstance does not describe Terri’s case. The tube indeed treats her condition quite well. Allowed food and hydration, she lives.

But, goes the counter-argument, allowed air, so does Reeve. The ventilator treats his condition quite well. Allowed air, he lives. His tube and hers both force an element necessary to survival into the patient’s system. The accurate parallel is not that between his nervous system and her digestive system, but between the nervous systems of both, for it was damage to her nervous system that caused the inability to swallow.

And so far, I would say, so good, with one crucial difference: Take away Reeve’s tube and he will at once stop breathing; take away Terri’s, and her digestive system will not at once shut down. It will continue working until all the food is gone. In fact, it will begin to digest her own tissues until starvation is complete. Reeve’s lungs would have no such residual activity.

Many will think this distinction too finely wrought, leaving their doubts undisturbed. And yet I wonder if they would have any doubt were Terri Schiavo fully conscious.

Even as I say that a stronger case can be made for letting Reeve go than for Schiavo, I do so with strict qualifications. When Christopher Reeve awoke from his accident, he found himself reborn, so to speak, into a new life, one that he did not ask for, but that we gave him, and though we gave it, it is not ours to take away. It seems to me that once a treatment is initiated, we have entered into a morally binding contract with the patient, and further, that if this patient is capable of making his wishes known, it should now be up to him to decide when enough is enough.

He cannot morally ask you to hurry him along—by requesting, for example, a fatal injection—but I don’t see how his right to be free of a burdensome, life-prolonging treatment, a device that is literally interfering with his dying, can be denied him. Since depression often follows hard upon severe disability, due passage of time may be required, allowing his soundness of mind to be judged by those closest to him, but it is a fact that sometimes people know when it is their time to go to God, and I, for one, would not gainsay them.

Not Dying, But Living

But wouldn’t this apply to Terri as well? Suppose she were fully awake and requested that the tube be removed. Shouldn’t we heed her wish, her right to die?

I say no, basing my answer on the immemorial principle that we may not do evil that good may come. I wish it were a principle we could all agree on, but I don’t think we can anymore. We may not, by act or omission, purposely intend the death of another for whatever reason.

We may allow nature to “take its course” if there is no hope of recovery, rendering the course of treatment excessively burdensome to the patient and merely prolonging his suffering with no hope of improvement. This is not to intend his death. Death is coming on its own and in its own time. We are not committing murder; nature is. Nor are we doing the same by omission because, whatever we do or fail to do, we cannot win.

This does not describe Terri Schiavo’s case. Her case is, in my opinion (and I intend no cruel wordplay), a no-brainer. She is not dying, but living. She needs to be fed and that is all. This is a thing we do for each other.

Her only problem—society’s problem, actually—is that she is severely mentally retarded. She is not participating in the life of the world as others would like. Being alive is not enough. That you are human and in existence no longer grants you an inherent and infinitely precious worth.

Now if Terri’s heart condition kicks up again, things could change. A case could be made for withdrawing the tube if it became part of the treatment in her fight against heart failure that would not relent. But that is not the case at the moment.

But then, if we allowed withdrawal of Reeve’s tube at his request, wouldn’t we be contradicting our prior principle that we may not intend the death of another? I don’t think so. What would we be intending if we acceded to his wish? Would we not be intending that, as the machine went off, his breathing would go on,

that he would live? Of course we would. And in the event he did not go on breathing, we would be allowing the dying process (nature) to finish its course, accompanied by the hope that Mr. Reeve would find rest in the arms of God.

But apart from his request, he remains untouchable. In Terri’s case, we would be embracing an action, with full and complete consent of the will, that we know for a certainty and beyond all doubt will end in her death. We cannot hope that she will go on eating.

As to the manner of death in each case, the difference is that, in the one, the choice belongs to the patient, and in the other it does not. Or perhaps I should say that it’s being taken from her. That her life is hers no matter what others think of it is a guiding principle in rapid decline. I don’t know how it will be retrieved.

The Essential Difference

Now let us suppose one further thing: that I am wrong in this comparison of the two cases, most especially in that comparison of the nature of Reeve’s “fatal condition”

with Terri’s, and of his ventilator with her tube. Where would that leave us as regards the essential difference between them?

I say it would leave us back where we started, among certain untutored college students who say that the difference between his awareness and hers makes all the difference in the world as to whether or not one ought to be allowed to live or made to die. We are back with Wesley Smith’s charge that those who choose the latter course do so based on an artificial distinction about one’s worth, one’s personhood, one’s “quality of life.” The witness of those students, and of the degreed Dr. Caplans, only serves to remind us of the effect on our judgment when one patient is fully conscious and of undiminished faculties and the other is not.

It is the same line of thinking that allows so many babies to be aborted: They are undeveloped, their capacity for a properly sensate, fully human experience is not yet present, and so, until they cross some very poorly defined line, they are placed at the mercy of others “in a position to judge.” That they do experience life at an age--appropriate level, that life itself is a continuum along which one must inhabit the earlier stages if he is ever to achieve the later, that, in short, you can’t get here without first having been there, does not seem to sway the opinions of many.

Terri Schiavo has undergone a developmental reversal; she has, in a sense, turned around and crawled back into the womb, and is once again at the mercy of those “in a position to judge.” Her umbilical cord is a feeding tube, and unless the grace of God performs some great work, it will one day be cut. That other womb, the law of our land and the protections it might afford, is no longer one of safety and sustenance. It is her enemy.

Terri’s Execution

Here is something I don’t get. If a murderer on death row were found to be suffering his execution by means of starvation—by our withholding from him food and drink—the ensuing uproar would occupy the national headlines and the shouted outrage of the television news until the injustice had been repaired and the warden and his foot soldiers brought to bar and thrown in prison. What would be cruel and unusual punishment for the murderer will be good enough for Terri.

That’s the world we live in now. We agonize over punishing the guilty, while throwing the innocent into Astarte’s fire. And it’s all legal. Where’s Sister Prejean when we need her? Terri Schiavo, being innocent of any crime save possession of a “life not worth living,” lacks star power. She doesn’t draw the crowds. She has no bad-girl swagger. There’s no glamour here, just a dead woman waking.

The quality-of-life crowd thinks she’s as good as dead, not really there. But I had a student once, a very young man, who had suffered a terrible head injury in a recreational-vehicle accident, one of those three-wheelers, I believe. He spent some time in a coma. He attended my class in a wheelchair. His speech was slurred, his physical movements bordering on the spastic. He had an awful time writing in class, but gutted it out. On first meeting, I imagine many thought him sub-intelligent (I know his classmates did), until they learned to decipher his words and realized quite the opposite. He made an A. A real A, not a gift. We judge so easily and quickly by appearances.

You see, I know Terri Schiavo’s in there. We’ve all heard the philosopher’s words, that the “soul is the form of the body.” The soul is intact, but the body gravely injured. The soul has lost access to the instrument of its expression, but it’s in there. And I think that before a judge or a husband kills her, they ought to have to prove me wrong.

There is one other thing I’d like to see, just once, the very thing so many have given up on even the possibility of, but which has been known to attend our human frailty from time to time: a miracle. I’d like to see God bring a Terri Schiavo out of her persistent vegetative state so that the world would know what’s hiding behind it. But I guess I shouldn’t always be seeking after a sign.

Arthur Caplan’s articles can be found at www.msnbc.msn.com/id/4669899 and www.msnbc.msn.com/id/3226708; the pope’s remarks at www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc_en.html; and Wesley Smith’s article at www.firstthings.com/ftissues/ft0310/opinion/smith.html.

The Diabolical Kingdom

If a man is convicted of murder, he can be sentenced to death by a judge. The governor of the state, for whatever reason he deems sufficient, can later commute that sentence or even grant clemency, and no judge may second-guess him.

Like the murderer, Terri Schiavo went on trial for her life, but not before a jury of her peers and not for having committed any crime. She was the defendant in a bizarre murder trial in which she was both the accused and the victim, but could neither take the stand on her own behalf nor confront her accusers. She was found guilty as charged of . . . what, exactly? I’ll leave to readers the unearthing of the mot juste that would describe her offense. And she was sentenced to death.

What evades understanding is why Governor Bush has authority to grant clemency in the former case but not the latter. It must be some subtlety of the law that we servants of the servile state can’t grasp. What kind of society, some of us would like to know, allows clemency for the guilty but not for the innocent? What kind of society brings an innocent person to trial in the first place? What diabolical kingdom compels a woman to be tried, not for crimes against her fellows or against the crown, but for her very humanity?

As in the case of abortion, Terri’s murder will

be perpetrated beyond public view, yet there might seem to be a defining difference between them. Unlike the baby in the womb, whose dependence and invisibility incur a fatal anonymity, this fellow human being is fully in the open and utterly independent of the person who will do the killing. Our black-robed vicars of moral clarity are permitting her execution anyway.

But I don’t think it’s really a difference at all. We’ve simply expanded beyond the womb the place where judges, like Justice Blackmun in Roe v. Wade, sometimes have trouble telling who is human and who is not, and, faithful to the logic of previous ruminations, end up erring on the side of not. If you don’t know what it is, you can kill it. We pretend not to see what is before our eyes. We live in an age when the denial of the obvious has become a virtue. We’ve finally found an area where even men can exercise their “freedom of choice,” men like Michael Schiavo.

William Luse

 

 

Diagnosing Unawares

The case of Terri Schiavo has focused national attention on one of the bioethical problems of our day: the “persistent vegetative state” (PVS). The unfortunate term was coined in 1972, when two neurologists declared that they had identified a condition of “wakefulness without awareness” in which a patient, due to head injury, lack of oxygen, or degenerative disease, has lost all upper brain functions.

Since 1972, confusion in diagnosis, treatment, and making ethical decisions about these patients has been the order of the day. The term has come to be applied to people who do show signs of awareness, and it is often confused with “brain death,” the irreversible loss of all functions of the brain. “Right-to-die” advocates have used the term to rally people to their cause, to the point that some state laws now classify giving such patients food and water as medical treatment that can be withheld from them.

The state is not easily diagnosed. Although accepted signs include the absence of awareness of oneself or one’s environment, we cannot measure thought or awareness—we can only measure behavior and movement. Today’s medical tests are not specific enough to make a certain diagnosis of PVS. As a result, the rate of misdiagnosis appears to be very high, approximately 40 percent, according to some studies.

Physical disabilities suffered by many of these patients, such as blindness and paralysis, can keep them from exhibiting behaviors that could make their awareness known. Video footage of Schiavo smiling and appearing to respond to her surroundings leads many to question whether she is actually in this state.

In reality, the 1972 definition and more recent attempts to define PVS are not nuanced enough to describe the true state of many patients who have suffered severe brain injury. Consciousness is a continuum, not an all-or-nothing phenomenon. Human brains are not like light bulbs that are either on or off. They are more like irons, which, while turned on, may be anywhere from warm to hot. Unfortunately, medical treatment and ethical decision-making have not always taken into account that many things are still unknown about severe brain injury.

Some of the most promising work with severely brain-injured patients is taking place outside the United States. (In the United States, low insurance reimbursement for intensive, long-term rehabilitation discourages the development of specialized centers for the treatment of PVS patients.)

One diagnostic tool, developed at the Royal Hospital for Neurodisability in London, has enabled doctors to identify awareness in patients previously diagnosed as unaware, some for as long as seven years. Some of these patients have begun to communicate, regain some physical function, and express their wish to live.

Cindy Province

This story appeared in the Baptist Press (www.bpnews.net). Cindy Province is the associate director of the St. Louis Center for Bioethics and Culture (www.thecbc.org).


William Luse is an adjunct professor of English at Valencia Community College in Orlando, Florida, and host of the Catholic website Apologia.

Letters Welcome: One of the reasons Touchstone exists is to encourage conversation among Christians, so we welcome letters responding to articles or raising matters of interest to our readers. However, because the space is limited, please keep your letters under 400 words. All letters may be edited for space and clarity when necessary. letters@touchstonemag.com

 

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