Robert D. Orr:
Feeding tubes make the news periodically, and controversies over their use or non-use seem unusually contentious. But feeding tubes are not high technology treatment; they are simple, small-bore catheters made of soft synthetic material. Nor are they new technology; feeding tubes were first used in 1793 by John Hunter to introduce jellies, eggs, sugar, milk, and wine into the stomachs of patients unable to swallow. Why does this old, low-tech treatment generate such controversy today? The important question is not whether a feeding tube can be used, but whether it should be used in a particular situation.
Too often in medicine we use a diagnostic or therapeutic intervention just because it is available. This thoughtless approach is sometimes called the technological imperative, i.e., the impulse to do everything we are trained to do, regardless of the burden or benefit. Kidney failure? Let’s do dialysis. Respiratory failure? Let’s use a ventilator. Unable to eat? Let’s put in a feeding tube. By responding in this way, the physician ignores the maxim “the ability to act does not justify the action.” Just because we know how to artificially breathe for a patient in respiratory failure doesn’t mean that everyone who cannot breathe adequately must be put on a ventilator. Such a response also represents a failure to do the moral work of assessing whether the treatment is appropriate in a particular situation.
The moral debate about the use or non-use of feeding tubes hinges on three important considerations: the distinction between what in the past was called “ordinary” and “extraordinary” treatments; the important social symbolism of feeding; and a distinction between withholding and withdrawing treatments.
It was recognized many years ago that respirators, dialysis machines, and other high-tech modes of treatment are optional. They could be used or not used depending on the circumstances. However, it was commonly accepted in the past that feeding tubes are generally not optional. Part of the reasoning was that feeding tubes are readily available, simple to use, not very burdensome to the patient, and not very expensive. They were “ordinary treatment” and thus morally obligatory.
For over four hundred years, traditional moral theology distinguished between ordinary and extraordinary means of saving life. Ordinary means were those that were not too painful or burdensome for the patient, were not too expensive, and had a reasonable chance of working. These ordinary treatments were deemed morally obligatory. Those treatments that did involve undue burden were extraordinary and thus optional. This distinction was common knowledge in religious and secular circles, and this language and reasoning was commonly applied in Western society.
As medical treatments became more complicated, it was recognized that this distinction was sometimes not helpful. The problem was that the designation appeared to belong to the treatment itself, rather than to the situation. The respirator and dialysis machine were categorized as extraordinary while antibiotics and feeding tubes were classed as ordinary. But real-life situations were not that simple. Thus began a change in moral terminology first officially noted in the Declaration on Euthanasia published in 1980 by the Catholic Church’s Sacred Congregation for the Doctrine of the Faith: “In the past, moralists replied that one is never obligated to use ‘extraordinary’ means. This reply, which as a principle still holds good, is perhaps less clear today, by reason of the imprecision of the term and the rapid progress made in the treatment of sickness. Thus some people prefer to speak of ‘proportionate’ and ‘disproportionate’ means.”
This newer and clearer moral terminology of proportionality was used in secular ethical analysis as early as the 1983 President’s Commission report, Deciding to Forego Life-Sustaining Treatment. The “ordinary/extraordinary” language, however, continues to be seen in the medical literature and heard in the intensive care unit. Reasoning on the basis of proportionality requires us to weigh the burdens and the benefits of a particular treatment for a particular patient. Thus a respirator may be proportionate (and obligatory) for a young person with a severe but survivable chest injury, but it may be disproportionate (and thus optional) for another person who is dying of lung cancer. The same is true for (almost) all medical treatments, including feeding tubes. There are two treatments that always remain obligatory, as I shall explain below.
A second aspect of the discussion about the obligation to provide nutritional support, especially in secular discussions but also in religious debate, was the symbolism of food and water—feeding is caring; nutrition is nurture; food and water are not treatment, and therefore they are never optional. The reasoning commonly went as follows: we provide nutritional support for vulnerable infants because this is an important part of “tender loving care.” Shouldn’t we provide the same for vulnerable adults as well?
Certainly when a patient is temporarily unable to swallow and has the potential to recover, artificially administered fluids and nutrition are obligatory. Does that obligation change if the prognosis is poor?
This aspect of the debate continued through the 1970s and ’80s. It appeared to be resolved by the U.S. Supreme Court in its 1990 decision in Cruzan v. Director, Missouri Department of Health when five of the nine Justices agreed that artificially administered fluids and nutrition are medical treatments and are thus optional. Since Cruzan, medical and legal professions have developed a consensus that feeding tubes are not always obligatory. This debate is ongoing, however, and in some minds the symbolism of feeding remains a dominant feature.
A parallel concern to the symbolism entailed in the use of fluids and nutrition is the commonly heard accusation, “But you will be starving him to death!” when discontinuation of a feeding tube is discussed. This is incorrect. Starvation is a slow process that results from lack of calories and takes several weeks or months. When artificially administered fluids and nutrition are not used in a person who is unable to swallow, that person dies from dehydration, not starvation, and death occurs in five to twelve days. Dehydration is very commonly the last physiologic stage of dying, no matter what the cause.
“But that is no comfort! Being dehydrated and thirsty is miserable.” Yes and no. Being thirsty is miserable, but becoming dehydrated need not be. The only place in the body where thirst is perceived is the mouth. There is good empirical evidence that as long as a person’s mouth is kept moist, that person is not uncomfortable, even if it is clear that his or her body is becoming progressively dehydrated.
I said earlier that there are two treatments that are never optional: these are good symptom control and human presence. Therefore, when a person is becoming dehydrated as he or she approaches death, it is obligatory to provide good mouth care, along with other means of demonstrating human caring and presence, such as touching, caressing, gentle massage, hair-brushing, talking, reading, and holding.
A third feature of the debate over feeding tubes is the issue of withholding versus withdrawing therapy. Thirty years ago, it was common teaching in medicine that “it is better to withhold a treatment than to withdraw it.” The thinking was that if you stop a ventilator or dialysis or a feeding tube, and the patient then dies from this lack of life support, you were the agent of death. Therefore, it would be ethically better not to start the treatment in the first place. Then, if the patient dies, death is attributable to the underlying disease and not to your withdrawal of life support.
Slowly, with help from philosophers, theologians, attorneys, and jurists, the medical profession came to accept that there is no moral or legal difference between withholding and withdrawing a treatment. In fact, it may be ethically better to withdraw life-sustaining treatment than it is to withhold it. If there is a treatment with a very small chance of helping the patient, it is better to give it a try. If it becomes clear after a few days or weeks that it is not helping, then you can withdraw the treatment without the original uncertainty that you might be quitting too soon, and now with the comfort that comes from knowing you are not the agent of death.
However, even if there is no professional, moral, or legal difference, it still may be psychologically more difficult to withdraw a treatment that you know is postponing a patient’s death than it would have been not to start it in the first place. Turning down the dials on a ventilator with the expectation that the patient will not survive is more personally unsettling than is merely being present with a patient who is actively dying. Withdrawal of a feeding tube can be even more unsettling, especially if the professional involved has any moral reservations about the distinction between ordinary and extraordinary means, or about the symbolism of artificially administered fluids and nutrition.
Some develop this part of the debate with moral concern about intentionality. They contend that your intention in withdrawing the feeding tube is that the patient will die, and it is morally impermissible to cause death intentionally. In actuality, the intention in withdrawing any therapy that has been proven not to work is to stop postponing death artificially.
With these aspects of the debate more or less settled, where does that leave us in making decisions about the use or non-use of feeding tubes? The short-term use of a feeding tube for a patient who is unable to swallow adequate fluids and nutrition for a few days, because of severe illness or after surgery or trauma, may be lifesaving and is almost always uncontroversial. Such usage may even be morally obligatory when the goal of treatment is patient survival and a feeding tube is the best way to provide needed fluids and nutrition.
A feeding tube is sometimes requested by a loved one as a last-gasp effort to postpone death in a patient who is imminently dying and unable to swallow. This is almost always inappropriate. Good mouth care to maintain patient comfort and hygiene is obligatory, but in such cases maintenance of nutrition is no longer a reasonable goal of treatment. In fact, introduction of fluids may even lead to fluid overload that can cause patient discomfort as the body’s systems are shutting down.
The situation that can generate ethical quandaries, front-page news, and conflicts in court is the long-term use of feeding tubes. And these situations are not as neatly segregated into proportionate or disproportionate usage.
Long-term use of a feeding tube remains ethically obligatory for a patient who is cognitively intact, can and wants to survive, but is permanently unable to swallow, an example being a patient who has been treated for malignancy of the throat or esophagus. Protracted use of a feeding tube is also morally required in most instances when it is uncertain whether a patient will regain awareness or recover the ability to swallow—for instance, immediately after a serious head injury or a disabling stroke.
Long-term use of a feeding tube becomes controversial in patients suffering from progressive deterioration of brain function (e.g., Alzheimer’s dementia), or in patients with little or no likelihood of regaining awareness after illness or injury (e.g., the permanent vegetative state). Thus, the most perplexing feeding-tube questions involve patients who are unable to take in adequate fluids and nutrition by themselves but who have a condition that by itself will not soon lead to death. The reasoning is: the patient has no fatal condition; he or she can be kept alive with the simple use of tube feedings; therefore we are obligated to use a feeding tube to keep this person alive.
Alzheimer’s dementia is the most common type of brain deterioration, afflicting five percent of individuals over sixty-five and perhaps as many as 50 percent of those over eighty-five. It is manifested by progressive cognitive impairment, followed by physical deterioration. This process generally takes several years, often a decade, and is ultimately fatal. In its final stages it almost always interferes with the patient’s ability to swallow. Eventually the individual chokes on even pureed foods or liquids. Continued attempts at feeding by mouth very commonly result in aspiration of food or fluid into the airway, frequently leading to pneumonia. Aspiration pneumonia will sometimes respond to antibiotics, but other times it leads to death. Such respiratory infections are the most common final event in this progressive disease.
Feeding tubes have been commonly used in the later stages of Alzheimer’s. The reasoning has been that this patient is not able to take in adequate fluids and nutrition and he is not imminently dying. Several assumptions then follow: a feeding tube will improve his comfort, will prevent aspiration pneumonia, and will ensure adequate nutrition which will in turn prevent skin breakdown and thus postpone his death. However, empirical evidence, published in the Journal of the American Medical Association in 1999, has shown each of these assumptions to be incorrect: using a feeding tube in a patient with dementia does not prevent these complications, nor does it prolong life.
In addition, there are several negative aspects to using a feeding tube in a person with advanced cognitive impairment. There are rare complications during insertion, some merely uncomfortable, some quite serious. Having a tube in one’s nose is generally uncomfortable; even having one coiled up under a dressing on the abdominal wall can be annoying. Because the demented patient doesn’t understand the intended purpose of the feeding tube, he or she may react by trying to remove it, requiring either repeated re-insertions or the use of hand restraints. In addition, using a feeding tube may deprive the patient of human presence and interaction: hanging a bag of nutritional fluid takes only a few seconds, as opposed to the extended time of human contact involved in feeding a cognitively impaired person.
There is a slowly developing consensus in medicine that feeding tubes are generally not appropriate for use in most patients nearing the end stage of Alzheimer’s disease. This belief can be supported from a moral standpoint in terms of proportionality. And yet feeding tubes are still rather commonly used. A recently published review of all U.S. nursing home patients with cognitive impairment found that an average of 34 percent were being fed with feeding tubes (though there were large state-to-state variations, from nine percent in Maine, New Hampshire, and Vermont to 64 percent in Washington, D.C.).
The cases we read about in the newspaper—in which families are divided and court battles fought—most often involve patients in a permanent vegetative state (PVS). This is a condition of permanent unawareness most often caused by severe head injury or by the brain being deprived of oxygen for several minutes. Such deprivation may be the result of successful cardiopulmonary resuscitation of a patient whose breathing or circulation had stopped from a cardiac arrest, near-drowning, strangulation, etc. In a PVS patient, the heart, lungs, kidneys, and other organs continue to function; given good nursing care and artificially administered fluids and nutrition, a person can live in this permanent vegetative state for many years.
A person in a PVS may still have reflexes from the spinal cord (grasping, withdrawal from pain) or the brain stem (breathing, regulation of blood pressure), including the demonstration of sleep-wake cycles. He may “sleep” for several hours, then “awaken” for a while; the eyes are open and wander about, but do not fix on or follow objects. The person in a PVS is “awake, but unaware” because the areas of the upper brain that allow a person to perceive his or her environment and to act voluntarily are no longer functioning.
Some of the clinical controversy about nutritional support for persons in a PVS is due to uncertainty. After a head injury or resuscitation from a cardiac arrest, it may be several weeks or months before a patient can rightly be declared to be in a PVS—months during which the provision of nutritional support via feeding tubes is often very appropriate. Loved ones usually remain optimistic, hoping for improvement, praying for full recovery. The length of time from brain damage to declaration of a PVS can extend, depending on the cause of the brain injury, from one month to twelve months. And just to muddy the waters even further, there are rare instances of delayed improvement after many months or even a few years, so that the previously unaware patient regains some ability to perceive his or her environment, and may even be able to say a few words. These individuals are now in a “minimally conscious state.” More than minimal delayed improvement is exceedingly rare. (Treatment decisions for persons in a minimally conscious state are perhaps even more controversial than are those for PVS patients, but that discussion must wait for another time.)
The greatest ethical dilemma surrounding the use or non-use of nutritional support for persons in a PVS arises from the fact that they are not clearly dying. With good nursing care and nutrition, individuals in this condition have survived for up to thirty-five years. Those who advocate continued nutritional support argue thus: this person is alive and not actively or imminently dying; it is possible to keep him alive with minimal effort; this human life is sacred; therefore we are obligated to continue to give artificially administered fluids and nutrition.
It is hard to disagree with the various steps in this line of reasoning. (Some utilitarians do disagree, however, claiming that a patient in a PVS is “already dead” or is a “non-person.” Those who believe in the sanctity of life must continue to denounce this line of thought.) Let us stipulate the following: the person in a PVS is alive; he can be kept alive for a long time; his life is sacred. But does the obligation to maintain that severely compromised human life necessarily follow from these premises?
Let’s first address the issue of whether he is dying. One could maintain that his physical condition is such that he will die soon but for the artificial provision of fluids and nutrition. Thus the permanent vegetative state could be construed to be lethal in and of itself. However, that fatal outcome is not inevitable since the saving treatment is simple. How does this differ from the imperative to provide nourishment for a newborn who would die without the provision of fluids and nutrition? There are two differences. Most newborns are able to take in nutrition if it is placed in or near their mouths. PVS patients can’t swallow, so the nutrition must be delivered further down the gastrointestinal tract. As for sick or premature infants, they have a great potential for improvement, growth, and development. The PVS patient has no such potential.
Rather than a newborn, a better analogy for this aspect of the discussion would be a person with kidney failure. The kidney failure itself is life-threatening, but it is fairly easily corrected by dialysis three times a week. If the person has another condition that renders him unaware of his surroundings, or a condition that makes life a continuous difficult struggle, most would agree that the person is ethically permitted to stop the dialysis even if that means he will not survive. The ultimate cause of death was treatable, so that death could have been postponed, possibly for years. However, other mitigating circumstances may make the dialysis disproportionate, and so one should be allowed to discontinue this death-postponing treatment in a person who is not imminently dying.
Someone coming from a mechanistic perspective can easily and comfortably decide that a person in a PVS with no potential for recovery has no inherent value and is even an emotional drain on loved ones and a financial drain on society. But what about a person of faith? Does the sanctity of life, a basic tenet of Christianity, Judaism, and Islam, dictate that life must always be preserved if it is humanly possible to do so? Our moral intuitions tell us the answer is no.
It might be possible to postpone the death of a patient from end-stage heart failure by doing one more resuscitation. It might be possible to postpone the death of someone with end-stage liver disease by doing a liver transplant. It might be possible to postpone the death of someone with painful cancer with a few more blood transfusions or another round of chemotherapy. But these therapies are often not used—because the burden is disproportionate to the benefit. Thus the timing of death is often a matter of choice. In fact, it is commonly accepted that the timing of 80 percent of deaths that occur in a hospital is chosen.
Believers do not like to use the words “choice” and “death” in the same sentence. Doing so recalls acrimonious contests about the “right to life” versus the “right to choose” that are the pivotal point in debates about abortion, assisted suicide, and euthanasia. And certainly belief in the sanctity of human life obligates believers to forgo some choices. But does this belief preclude all choices? No: life is full of difficult choices. This is true for believers and nonbelievers alike. Believers may have more guidance about what choices to make and perhaps some limits on options, but we still are faced with many choices—such as choices about the use or non-use of feeding tubes.
When engaging in moral debate on matters of faith, it is important not to focus exclusively on one tenet of faith to the exclusion of others. In debating the use of feeding tubes—or of any mode of treatment for that matter—one must not ignore the concepts of finitude and stewardship by focusing only on the sanctity of life.
If belief in the sanctity of human life translated automatically into an obligation to preserve each human life at all costs, we would not have to debate proportionate and disproportionate treatments. We would simply be obligated to use all treatments available until they failed to work. However, because of the Fall, human life is finite. All of us will die. Since that is inevitable, God expects us to care wisely for our own bodies and for those of our loved ones, and also for our resources. Healthcare professionals similarly must be wise stewards of their skills and services.
Taking into consideration the scriptural principle of stewardship and the tradition of proportionate treatment, I conclude that there must be some degree of discretion in the use or non-use of feeding tubes. There are clearly situations where a feeding tube must be used. There are other situations where a feeding tube would be morally wrong. But there are many situations where the use of a feeding tube should be optional. And this means that one individual of faith might choose to use a tube when another might choose not to use it.
Because of the patient’s personal values, someone might choose to continue artificially administered fluids and nutrition for a loved one in a permanent vegetative state for many years. Another might choose to continue for one year and then to withdraw it if there was no sign of awareness. Still another might choose to stop after three months or one month.
What might those discretionary personal values include? Such things, among others, as an assessment of how to deal with uncertainty, concern about emotional burden on loved ones, and cost of care. Though beliefs in the sanctity of human life and in the obligation to care for vulnerable individuals are not optional for persons of faith, an assessment of whether or not to use a given technology requires human wisdom and thus entails some discretion.
Robert D. Orr, M.D. is the Director of Ethics for Fletcher Allen Health Care and Professor of Family Medicine at the University of Vermont College of Medicine.
Gilbert Meilaender:
There is much to agree with in Robert D. Orr’s measured discussion of the moral issues surrounding the use of feeding tubes, there are a few things that seem to me doubtful or in need of clarification, and then there is one major issue that requires greater precision.
It may be useful to note first some claims of Dr. Orr that few would dispute:
• Feeding tubes are a rather low-tech form of care.
• Our ability to do something does not mean that we should do it.
• Any distinction between “ordinary” and “extraordinary” care (if we wish to use that language) cannot simply be a feature of treatments but must be understood as patient-relative. What is ordinary treatment for one patient may be extraordinary for another, and what is ordinary treatment for a patient at one point in his life may become extraordinary at another point when his illness has progressed to a new stage.
• There is no crucial moral difference between withholding or withdrawing a treatment. (Dr. Orr actually writes that there is “no moral or legal difference” between these. The issue of legality is, I suspect, sometimes more complicated, but I take him to be correct insofar as a strictly moral judgment is involved.)
• There are circumstances, some noted by Dr. Orr, in which the use of feeding tubes seems clearly required and is relatively uncontroversial.
• Patients in a persistent vegetative state are not dying patients. (I don’t quite know how to combine this with Dr. Orr’s statement a few paragraphs later that the permanent vegetative state “could be construed to be lethal in and of itself.” In general, I don’t think his article ever really achieves clarity and precision on this question, and it will turn out to be a crucial question below.)
• A commitment to the sanctity of human life does not require that we always do everything possible to keep a person alive.
There are also places where Dr. Orr’s discussion seems to me to be doubtful or, at least, underdeveloped. Among these are the following:
• The idea that the terms “proportionate” and “disproportionate” are more precise than the (admittedly unsatisfactory) language of “ordinary” and “extraordinary” is, at best, doubtful. On what scale one “weighs” benefits and burdens is a question almost impossible to answer. Even more doubtful is whether we can “weigh” them for someone else. My own view is that when we make these decisions for ourselves, we are not in fact “weighing” anything. We are deciding what sort of person we will be and what sort of life will be ours. We are making not a discovery but a decision. And if that is true, then it is obvious that we have not discovered anything that could necessarily be transferred and applied to the life of a different patient. In general, the language of “weighing” sounds good, but it is almost impossible to give it any precise meaning.
• No moral question was resolved by the Supreme Court’s Cruzan decision. It established certain legal boundaries, but it did no more than that.
• I suspect that—despite the growing consensus, which Dr. Orr correctly describes—he is too quick to assume that the “symbolism” issue can be dispensed with, and too quick to assume that feeding tubes are “treatment” rather than standard nursing care. A consensus may be mistaken, after all. It is hard to see why such services as turning a patient regularly and giving alcohol rubs are standard nursing care while feeding is not. To take an example from a different realm of life, soldiers are combatants, but the people who grow the food which soldiers eat are not combatants (even though the soldiers could not continue to fight without nourishment). The reason is simple: they make not what soldiers need to fight but what they need, as we all do, in order merely to live. Likewise, we might want to think twice before endorsing the view that relatively low-tech means of providing nourishment are treatment rather than standard nursing care.
• Dr. Orr’s discussion of the role of “intention” in moral analysis is, putting it charitably, imprecise. Obviously, if a treatment has been shown not to work, in withdrawing it we do not intend or aim at the patient’s death. We aim at caring for that person as best we can, which hardly includes providing treatment that is useless. But the crucial questions will turn on instances in which the treatment is not pointless. If we stop treatment in such cases, it is harder to deny that our aim is that the patient should die.
• Dr. Orr’s seeming willingness to allow the state of a patient’s cognitive capacities to carry weight—or even be determinative—in treatment decisions is troubling. Obviously, certain kinds of higher brain capacities are characteristics that distinguish human beings from other species; however, one need not have or be exercising those capacities in order to be a living human being. Allowing the cognitive ability of a patient to determine whether he or she is treated will inevitably lead to judgments about the comparative worth of human lives.
• If Dr. Orr is correct in arguing that the use of feeding tubes in end-stage Alzheimer’s patients is of no help to those patients and may sometimes be burdensome to them, we would have no moral reason to provide them with tube feeding. This judgment, however, has nothing at all to do with “proportionality.” It has to do, simply, with the two criteria we ought to use in making treatment decisions—usefulness and burdensomeness. If a treatment is useless or excessively burdensome, it may rightly be refused.
This brings us to the most difficult issue, which clearly troubles Dr. Orr himself, and which is surely puzzling for all of us: the patient in a persistent vegetative state. We cannot usefully discuss this difficult case, however, without first getting clear more generally on the morality of withholding or withdrawing treatment. As I noted above, on this issue the language of proportionality is unlikely to be of much use for serious moral reflection.
At least for Christians—though, in truth, also much more generally for our civilization’s received medical tradition—we begin with what is forbidden. We should never aim at the death of a sick or dying person. (Hence, euthanasia, however good the motive, is forbidden.) Still, there are times when treatment may rightly be withheld or withdrawn, even though the patient may then die more quickly than would otherwise have been the case. How can that be? How can it be that, as a result of our decision, the patient dies more quickly, yet we do not aim at his death?
This is quite possible—and permissible—so long as we aim to dispense with the treatment, not the life. No one need live in a way that seeks to ensure the longest possible life. (Were that a moral requirement, think of all the careers that would have to be prohibited.) There may be many circumstances in which we foresee that decisions we make may shorten our life, but we do not suppose that in so deciding we are aiming at death or formulating a plan of action that deliberately embraces death as a good. So in medical treatment decisions the question we need to answer is this: Under what circumstances may we rightly refuse a life-prolonging treatment without supposing that, in making this decision, we are doing the forbidden deed of choosing or aiming at death?
The answer of our medical-moral tradition has been the following: we may refuse treatments that are either useless or excessively burdensome. In doing so, we choose not death, but one among several possible lives open to us. We do not choose to die, but, rather, how to live, even if while dying, even if a shorter life than some other lives that are still available for our choosing. What we take aim at then, what we refuse, is not life but treatment—treatment that is either useless for a particular patient or excessively burdensome for that patient. Especially for patients who are irretrievably into the dying process, almost all treatments will have become useless. In refusing them, one is not choosing death but choosing life without a now useless form of treatment. But even for patients who are not near death, who might live for a considerably longer time, excessively burdensome treatments may also be refused. Here again, one takes aim at the burdensome treatment, not at life. One person may choose a life that is longer but carries with it considerable burden of treatment. Another may choose a life that is shorter but carries with it less burden of treatment. Each, however, chooses life. Neither aims at death.
It is essential to emphasize that these criteria refer to treatments, not to lives. We may rightly reject a treatment that is useless. But if I decide not to treat because I think a person’s life is useless, then I am taking aim not at the treatment but at the life. Rather than asking, “What if anything can I do that will benefit the life this patient has?” I am asking, “Is it a benefit to have such a life?” If the latter is my question, and if I decide not to treat, it should be clear that it is the life at which I take aim. Likewise, we may reject a treatment on grounds of excessive burden. But if I decide not to treat because it seems a burden just to have the life this person has, then I am taking aim not at the burdensome treatment but at the life. Hence, in deciding whether it is appropriate and permissible to withhold or withdraw treatment—whether, even if life is thereby shortened, we are aiming only at the treatment and not at the life—we have to ask ourselves whether the treatment under consideration is, for this patient, either useless or excessively burdensome.
Against that background, we can consider the use of feeding tubes for patients in a persistent vegetative state. (I set aside here the point I noted above—that we might want to regard feeding simply as standard nursing care rather than as medical treatment. Now we are asking whether, even on the grounds that govern treatment decisions, we have good moral reason not to feed patients in a persistent vegetative state.)
Is the treatment useless? Not, let us be clear, is the life a useless one to have, but is the treatment useless? As Dr. Orr notes—quite rightly, I think—patients “can live in this permanent vegetative state for many years.” So feeding may preserve for years the life of this living human being. Are we certain we want to call that useless? We are, of course, tempted to say that, in deciding not to feed, we are simply withdrawing treatment and letting these patients die. Yet, as Dr. Orr also notes, these patients “are not clearly dying.” And, despite the sloppy way we sometimes talk about these matters, you cannot “let die” a person who is not dying. It is hard, therefore, to make the case for treatment withdrawal in these cases on the ground of uselessness. We may use those words, but it is more likely that our target is a (supposed) useless life and not a useless treatment. And if that is our aim, we had better rethink it promptly.
Is the treatment excessively burdensome? Alas, if these patients could experience the feeding as a burden, they would not be diagnosed as being in a persistent vegetative state. We may wonder, of course, whether having such a life is itself a burden, but, again, if that is our reasoning, it will be clear that we take aim not at a burdensome treatment but at a (presumed) burdensome life. And, once more, if that is our aim, we had better rethink it promptly.
Hence, although these are troubling cases, Dr. Orr has not given us good or sufficient arguments to make the case for withdrawing feeding tubes from patients in a persistent vegetative state. I have not suggested that we have an obligation always and at any cost to preserve life. I have simply avoided all comparative judgments of the worth of human lives and have turned aside from any decisions which, when analyzed carefully, look as if they take aim not at a dispensable treatment but at a life. “Choosing life” does not mean doing whatever is needed to stay alive as long as possible. But choosing life clearly means never aiming at another’s death—even if only by withholding treatment. I am not persuaded that Dr. Orr has fully grasped or delineated what it means to choose life in the difficult circumstances he discusses.
Gilbert Meilaender is a member of the President’s Council on Bioethics. The views expressed here are his own and do not represent the Council.
Les Trois Miracles de Sainte-Cécile: Fragments She is a gentle virgin— She is a pure virgin— She is a pensive maiden, She is a noble virgin She is Cecile, the boundary Henri Ghéon |
