Living Life’s End

A good bit of public attention in recent years has been focused on developments at the beginning of life: new reproductive technologies, for instance, and research on embryos. But questions about what we ought to do for those near the end of life may be more enduring and are, at least by my lights, more puzzling.

My aim here is to think through a few of those puzzles”not so much to solve them as simply to seek increased clarity about where and why we are puzzled. To the degree that I have a thesis to assert, it is captured in the words of Edgar in King Lear : “Men must endure/Their going hence, even as their coming hither;/Ripeness is all.”

Let us suppose that we can agree on the following points. (Not everyone will agree, of course, but the most fruitful clarifications and discussions often arise among those who already agree on a good bit. Moreover, these points of agreement have been”and, I think, in considerable measure still are”widely shared in our society.)

• We are not “vitalists,” as that term is sometimes used. A vitalist thinks that preserving life (even, as it is sometimes put, “mere biological life”) is always the most important human good”and, hence, that life must always be preserved if it can be, at whatever cost to other goods. If we thought this, we could not have a category of permissible “allowing to die.”

• We come to our deliberations about end-of-life care with some principles in hand, but we also form judgments about particular cases. There are bound to be instances in which our principles suggest one course of action, while our sense of the particulars of the case inclines us in a different direction. In such instances neither the principles nor our response to the particulars always holds trump in moral reasoning. To be sure, some principles we would be reluctant to change: they are so fundamental to everything we believe that changing them would be akin to a conversion. Likewise, there are some cases about which we can hardly imagine changing our mind. But our deliberations always move back and forth between principle and particular response, and adjustment can take place on either pole.

• Among the principles we want to uphold but must explore in relation to cases is that we should never aim at or intend the death of any of our fellow human beings (recognizing possible exceptions in cases where they are themselves threatening the lives of others). A slightly different but related formulation would be that we want to affirm the equal dignity of every human being. Hence, we should not think of ourselves as possessors of another’s life or judge that another’s life is not worthy of our care. (We might add that there is nothing wrong with wishing, hoping, or desiring that a suffering person die; the wrong would lie in acting in a way aimed to bring about that person’s death.)

• Committed to such a principle of equal respect, we are led quite naturally to a certain way of caring for others who are ill, suffering, or dying. On the one hand, we should not aim at their death (whether by action or omission). We shouldn’t do whatever we do so that they will die. On the other hand, because we do not think that continued life is the only good, or necessarily the greatest good, in every circumstance, we are not obligated to do everything that might be done to keep someone alive. If a possible treatment seems useless or (even if useful) quite burdensome for the patient, we are under no obligation to try it or continue it. And in withholding or withdrawing such a treatment, we do not aim at death. We simply aim at another good: the good of life (even if a shorter life) free of the burdens of the proposed treatment. There is nothing terribly unusual about this. All of us, all the time, choose among various life courses open to us. When we are young, we may have many life choices available. The older we get, the more that range narrows. If we become severely ill, the range may be quite narrow. And if we are irretrievably dying, the narrowing process may have left almost no choices at all. Yet, all along the way, we choose a life from among this range of life choices. We may choose a life that is more daring and heroic (though shorter) than some other possibilities. That is not the same as choosing death. Likewise, one might imagine a severely ill patient deciding to forego a painful round of possibly useful treatment”choosing thereby a predictably shorter life, but a life free of the burdens of that treatment.

It is quite possible that we can agree on these points, yet not agree entirely on what is right to do in certain cases. Two sorts of cases, in particular, are baffling. There are patients who seem to be increasingly, or even entirely, beyond the reach of our care. The patient in a persistent vegetative state would be at the furthest boundary”still clearly a living human being, though seemingly unaware of any care we provide, but able to live indefinitely if given tube feedings. There are also patients to whom care might still be given but who are on a trajectory which can only worsen over time. An example (which I owe to Leon Kass) would be a patient with Alzheimer’s disease who has a Stokes-Adams episode (in which a temporary loss of consciousness due to cardiac arrhythmia occurs). One might implant a pacemaker in such a patient, thereby preventing further such episodes, but thereby also making time for further stages of decline from the Alzheimer’s.

These cases may baffle us, even against the background of agreement I sketched above. In the instance of the patient in a persistent vegetative state, we may”to put it crassly”wonder what the point is of feeding. In the case of the patient with Stokes-Adams syndrome we may wonder whether we should help them now, knowing that by making cardiac arrest less likely we thereby keep them alive for still greater deterioration from dementia.

We can take these two sorts of cases in order and think them through. With regard to a patient in a persistent vegetative state, what is the point of providing care that seems to make no difference to the one who receives it? This is a question any of us might ask ourselves. Rather than addressing it directly, I want to trace briefly some reflections”and a change of mind”that Paul Ramsey wrote of years ago. Writing before a clear distinction had been made between comatose and PVS patients, Ramsey discussed patients in what he called “deep and irreversible coma.” We can simplify matters by taking his discussion to refer to PVS patients”which is, I think, more or less the sort of case he had in mind.

In 1970 Ramsey published The Patient as Person . Chapter three, titled “On (Only) Caring for the Dying,” is one of the classic early pieces of bioethical writing in this country. Any reader of the chapter will see that (while he is aware of the possibility of “undertreatment”) Ramsey’s chief concern is “overtreatment.” In the course of his discussion Ramsey argues that one basic imperative”“never abandon care””should govern our treatment decisions. He recognizes that we could effectively abandon proper care for patients by aiming at their death (by action or omission) but also by providing treatments which for them are either useless or excessively burdensome. If we withdraw or withhold treatment, and do so properly, we are not abandoning care for the person; rather, we are caring in what is now the appropriate manner. So we should never aim at a patient’s death, never treat him in a way intended to get him to go away, but we might well give care that provides for him a life free of the burdens of treatment, even if somewhat shorter than possible.

Having worked the argument to this point, Ramsey then considered (in the final section of chapter three) “two possible qualifications of our duty always to care for the dying.” Of the first of these”patients who are “irretrievably inaccessible to human care””Ramsey was not only asking whether it would be permissible to withdraw treatment from such patients. Because he was clear that one might aim at a patient’s death by withholding treatment, the “qualification” he was exploring was whether taking action to kill the patient”to whom it no longer seems to make any difference”might be permissible.

In considering such an exception, Ramsey did not suppose that he was setting aside the principle never to abandon care. On the contrary, his point was that one might argue that care cannot be given to a person who is “beyond” receiving it. And he made the point specifically with reference to feeding:

The proposed justifiable exception depends on the patient’s physiological condition which may have placed him utterly beyond reach. If he feels no suffering, he would feel no hunger if nourishment is withheld. He may be alone, but he can feel no presence. If this is a true account of some comatose patients, then in this sort of case we have correctly located the point at which the crucial moral difference between omission and commission as a guide to faithful actions has utterly vanished. The condition of the patient renders it for him a matter of complete indifference whether humankind’s final act toward him directly or indirectly allows death to come. He already is beyond our love and care.

Less than a decade later Ramsey returned to the question of possible qualifications of the duty never to abandon care. In his 1978 book Ethics at the Edges of Life , he took up again”though with greater care and precision”the question of possible exceptions. He more or less withdrew the earlier exceptions he had proposed, writing that he had ample reason to regret that he had not eliminated them from the manuscript of the earlier book.

Why the change of mind? A full account would draw us into a number of complexities, but a relatively simple answer is that he was no longer certain we can say with confidence when another living human being is beyond the reach of our care. Persuaded in considerable measure by objections Hans Jonas (“a person to me of exemplary moral wisdom”) had raised, Ramsey drew back: “The serious objection to searching for such exceptions is that”even within the stringent limits of indications of a patient’s impenetrable solitude silencing any need on our parts to feel an obligation to continue to extend care”one might still do the deadly deed to someone . . . who while beyond showing response to us may still be within reach of violation at our hands, and so not altogether in God’s keeping.”

That sentence ends a paragraph. The next paragraph begins: “But then the objectors shifted, and the objection changed . . . in support of outlooks in medical ethics I never thought of espousing.” From Ramsey’s attempt to see whether there were any exceptions to the principle which forbade abandoning care (because the agent could no longer give what could not be received), or from the view, “which was never in doubt,” that it would be right to let die those who were clearly dying, others moved to a search for reasons for “letting patients die who are in fact not dying.”

Which brings us back to the case of the patient in a persistent vegetative state. If at any point it seems the patient’s body is shutting down, that he is going to die quite soon regardless of whether he is given high-caloric feedings, surely we can discontinue feeding without abandoning him or aiming at his death.

But suppose a different case, in which a patient might live for a decade if fed. Such a patient is certainly severely disabled, but it would be counterintuitive to call him a “dying” patient. He is not irretrievably dying, perhaps not even terminally ill. And if he is not dying, it will be difficult to characterize a decision to stop feeding as simply “letting” or “allowing” this person to die. As Ramsey wrote, try “withholding the intention to cause the death of a patient” when acting thus. (This makes feeding quite different from decisions about removing a respirator. One does not know for certain that a patient will be unable to breathe on his own, and, unless we intend to suffocate him if he does breathe successfully on his own, it is possible to remove the respirator while withholding an intention to bring about the person’s death.)

We can, of course, readily understand why someone”any of us”might feel it was useless or made no sense to continue feeding such a person; yet, perhaps this is an impulse we should resist. As Hans Jonas put it, we should not “deny the extracerebral body its essential share in the identify of the person.” Hence, the body of such a human being, which “still breathes, pulses, and functions otherwise, must still be considered a residual continuance of the subject that loved and was loved””and for whom, therefore, we should never abandon care.

We might worry, of course, that we were now committed to any and all medical interventions which the patient in a persistent vegetative state might need in his continuing life. Would we provide all sorts of treatments, even quite invasive ones? And if not, why not? And if we would not provide various invasive treatments, does that mean we should rethink a decision to feed the patient?

The questions and permutations here become endless, of course, and many of them can scarcely be answered in advance. I would be reluctant to withhold antibiotics for treating a simple infection in such a patient, for it seems to me that I would withhold them only so that the patient would die. I’m also confident, however, that I would not think such a patient should have bypass surgery or have a leg amputated. Why the difference?

I think perhaps”trying, as we are, to articulate reasons for what amounts to an intuition”that more invasive treatments seem to make the patient a mere object. I realize, of course, that such persons may seem to be precisely that. Yet, I suspect that when we feed this patient we do not so much treat him as an object as try to honor the way in which his (seemingly now) “extracerebral body” retains “its essential share in the identity of the person.” It would be harder to think that way when we amputated a leg. Moreover, we could withhold the more invasive interventions while simultaneously withholding an intention that the patient die. But it is hard to believe we could withhold feeding while simultaneously withholding the intention that the patient die.

We can, therefore”or, at least, I think we can”develop what it means never to abandon care of such patients without supposing that we are somehow committed to using every intervention made possible by medical advance. And surely we can do so while acknowledging our mortality.

But the fear that medical advance simply keeps us alive to suffer greater and longer deterioration is a strong one, and it is best discussed by turning to the second sort of case”in which intervening to benefit and preserve life means keeping a person alive for what may well be a long period of deterioration and a yet worse death.

Suppose a person suffering from dementia experiences a Stokes-Adams episode. Why would we not implant a pacemaker in order to prevent further episodes? Almost certainly we would provide a pacemaker if the person were not demented, so why exactly would the presence of dementia make us do otherwise?

One reason we might be tempted not to provide a pacemaker for a demented patient has to do with a certain revulsion some may feel for a life (in particular, our own life or that of a loved one) that has descended deeply into dementia. Even if that demented person is actually quite content, as might well be the case, we may still draw back in the presence or at the thought of that “extracerebral” still-living body. But if we experience such revulsion, we should struggle against it, however naturally it comes to us”for if we decide against the pacemaker when moved by such feelings, it becomes hard to deny that we are doing this so that the demented person will die.

One might reject that conclusion, however, or at least argue with it. The argument would go something like this: In withholding the pacemaker we are not aiming at this person’s death. On the contrary, when all of us choose constantly from among the various lives available to us, we are choosing not only a life but also certain possible deaths. We are choosing among the various deaths open to us, making some far more likely than others”but this does not amount to aiming at or intending death. So we might decline the pacemaker for a demented loved one, choosing thereby a likely death from cardiac arrest rather than a death from other causes at the end of a long period of dementia.

This is a serious response, though I do not find it persuasive. Its flaw is that it is grounded less in a desire to benefit the life the patient has than to ask whether continued life would be a benefit. Or we could say that its flaw is that it seeks less to benefit the patient’s life than to manage, shape, and orchestrate the time and circumstances of the patient’s death. This gets the focus somewhat wrong. After all, the patient we have described with Stokes-Adams syndrome is not necessarily going to die at once if we decline the pacemaker for him. He may live on for some time, suffering occasional episodes, increasingly weak and listless. Hence, for as long as he lives on, our decision deprives him of benefits well within our power to provide without burdening him greatly. Thus, our desire to orchestrate the circumstances of death, to see that he dies from cardiac problems rather than as the end result of a decade of dementia, deflects our focus from helping him to live better for as long as he lives.

Moreover, the desire or attempt to manage and orchestrate the timing and circumstances of death may miss something important about what it means to be human and may, in fact, be poor preparation for death (our own or another’s) when it does come. Death means, after all, the defeat of our desire to shape the circumstances of our life. Trying to orchestrate the circumstances of death has the look, therefore, of one last attempt to be what we are not”the author of the story of our life or the life of another.

We are driven back, in short, to one of the central truths about human nature, a truth that complicates matters time and again in bioethics. On the one hand, we fail to do justice to the freedom that characterizes our nature if we suppose that human beings should simply suffer death as the other animals do, untouched by human art. On the other hand, we fail to honor the finitude that (just as much as freedom) characterizes our nature if we try to avoid or escape the trajectory that bodily life takes. must endure / Their going hence, even as their coming hither; / Ripeness is all.” The same desire to honor and respect bodily life that inclines us to hesitate before the possibility of engineering the “coming hither” of the next generation should also incline us to hesitate to engineer our “going hence.”

Euthanasia is the ultimate attempt at managing death (and misses the irony that we are attempting to master the very event that announces our lack of mastery). We are exploring now whether some treatment decisions approach too closely that same managerial attitude, whether they begin to choose death rather than life. Consider another sort of case: Suppose a diabetic and insulin-dependent person is told by his physician that he has a form of cancer which will almost surely kill him within two years. He is terminally ill, though hardly at this point irretrievably dying. We can suppose also that he accepts the broad moral contours I outlined at the beginning and would not, therefore, think it right to take a drug overdose now in order to avoid what lies ahead. But there is another possible route to such avoidance. He could simply stop taking his insulin, drift off into a diabetic coma, and in this manner orchestrate to some extent the manner of his “going hence.”

Why not? Why not shape the circumstances of his dying in this way”seizing upon the fact of his insulin-dependence, just as one might seize upon the fact of a cardiac arrhythmia to avoid years of dementia? Why do we sense, as I certainly do, that giving up his insulin at this point would be choosing death rather than simply choosing a life shorter than some possible lives he might choose?

One thing we might note is that the range of his life choices, though narrowing, remains considerable at this point. He could still decide to run the risks of learning to parachute from an airplane. He could still travel across the country to see a grandchild. He could still go to Florida to watch baseball teams in spring training. Perhaps doing any of these things would sap his body’s energy and result in a somewhat earlier death than would otherwise have occurred, but they would all be choices of life, not death. It is much harder, however, to describe a decision to dispense with his insulin as a choice of a certain kind of life. It would be hard to withhold the insulin at this point while (to use Ramsey’s formulation) simultaneously withholding the intention to bring about death.

I can also imagine, however, that a time might come (say, twenty-two months later) when this same person goes into the hospital for what he, his family, and his doctors know will be the last time. No longer simply terminally ill, he is now irretrievably dying. The range of his life choices has narrowed greatly; indeed, it is almost nil. If now he makes decisions which shape or orchestrate his manner of dying, he does so in a context where he is not choosing or aiming at death”an intention that would, after all, suggest an absurdly inflated sense of the possibilities still open to him. I would think that deciding to say goodbye, to stop taking the insulin, and to drift off into a diabetic coma would no longer amount to aiming at or choosing death. He would be shaping”even, if we wish, engineering”the manner of his dying, but not in what seems an unacceptable way.

This is as far as I can press my own reflections on these matters, but the central question is, I hope, clear. Take any case of a person who no longer seems to have much of a life. (I put it this way to capture not how we ought to think but how we often feel.) And suppose this person may die somewhat sooner if not treated but may live an indefinite period of time, in this less-than-desirable condition, if treated. And suppose, finally, that the treatment itself is not painful, is not unusually costly, does not require great inconvenience for the person being treated, and is not so invasive as to seem to make of the person a mere object. The treatment will benefit the life he has, even though one might be tempted to say that it’s not much of a benefit to have that life. If we withhold treatment in such a case, would we simply be shaping or orchestrating the manner of death in a morally acceptable way? Or would it be more accurate and honest to say that withholding treatment in these circumstances would be not merely shaping the manner of dying but choosing and aiming at death”withholding treatment in the hope that he will die as a result?

Whatever our uncertainties, and however precisely we respond to such cases, we need to do so in a way that attempts to hold on to the truth of our human condition. We should not want to think of ourselves as the author of the story of our own life or that of another”nor, therefore, as one who exercises ultimate authority over life. Indeed, when we think that way, or to the degree we think that way, we will almost certainly be unable to come to terms with the fact of death, and our attempt to deal with it is bound to be distorted. Some shaping and orchestrating of living and dying we all must do. But it is a true depiction of our humanity to say that “Men must endure / their going hence, even as their coming hither.” As Gene Outka put it in a somewhat different context, with respect to every person whose life is given us to care for, we are “enjoined to honor from first to last the space he occupies and the time he has.”

Gibert Meilaender holds the Duesenberg Chair in Christian Ethics at Valparaiso University.