Medical Care at the End of Life

A Catholic Perspective

David F. Kelly

• Publisher: Georgetown University Press
• Year: 2006
• ISBN:
  9781589013674
• Topic: Medicine
• Subtopic: Ethics in Medicine

For over thirty years, David F. Kelly has worked with medical practitioners, students, families, and the sick and dying to confront the difficult and often painful issues that concern medical treatment at the end of life. In this short and practical book, Kelly shares his vast experience, providing a rich resource for thinking about life's most painful decisions.

Kelly outlines eight major issues regarding end-of-life care as seen through the lens of the Catholic medical ethics tradition. He looks at the distinction between ordinary and extraordinary means; the difference between killing and allowing to die; criteria of patient competence; what to do in the case of incompetent patients; the meaning and use of advance directives; the morality of hydration and nutrition; physician-assisted suicide and euthanasia; and medical futility. Kelly's analysis is sprinkled with significant legal decisions and, throughout, elaborations on how the Catholic medical ethics tradition—as well as teachings of bishops and popes—understands each issue. He provides a helpful glossary to supplement his introduction to the terminology used by philosophical health care ethics. Included in Kelly's discussion is his lucid description of why the Catholic tradition supports the discontinuation of medical care in the Terry Schiavo case. He also explores John Paul II's controversial papal allocution concerning hydration and nutrition for unconscious patients, arguing that the Catholic tradition does not require feeding the permanently unconscious.

Medical Care at the End of Life addresses the major issues that inform this last stage of caregiving. It offers a critical guide to understanding the medical ethics and relevant legal cases needed for clear thinking when individuals are faced with those crucial decisions.

Chapter 1

Ordinary and Extraordinary Means

FROM the 1960s to the 1980s, Americans were unable to reach a consensus on the morality of forgoing medical treatment. Scholars disagreed about many of the issues—this continues today, as we will see—the basic stance of U.S. law had not been determined, the medical profession was largely unsure of what to do, and hospital policies varied widely. To the degree that there was a general approach, it was usually that the physician decided what to do in each individual case, and often that decision was to insist on ongoing aggressive treatment even when there was little human benefit. In the 1960s and 1970s, the growing field of bioethics reacted against this approach, against what came to be called “medical paternalism” (Veatch 1973). This criticism and other factors resulted in a radical change, so that by the 1990s it was possible to speak, at least in some sense, of an American consensus. This consensus emerged from bioethical scholarship and showed itself in a number of significant court cases, starting with the Quinlan case in 1976 and continuing through the U.S. Supreme Court cases on physician-assisted suicide (PAS) in 1997; it was also the result of a number of important decisions reached by governmental committees and commissions. It is true, of course, that there has never been universal agreement on the issues, and today what consensus exists is under attack, especially from those who would legalize euthanasia and/or PAS and, to a lesser extent, those who would use “medical futility” to reduce the decision-making authority of patients and surrogates and return it in some degree to physicians. The consensus is also under attack from those who claim that certain treatments, particularly medical nutrition and hydration (feeding tubes), are morally required even when their benefit to patients is slight or nonexistent, as in the case of patients in a persistent vegetative state. I will discuss all of these issues in detail in later chapters. Yet despite these areas of controversy, it is possible to speak of a consensus in U.S. law, medicine, and ethics about the legal and ethical rightness of forgoing life-sustaining treatment.

THE THREE PILLARS OF THE CONSENSUS

The best way to understand the current consensus is to see it as based on three pillars of support. The first pillar is the recognition that not all treatments that prolong biological life are beneficial to the patient. In the Catholic tradition, this concept is expressed in the distinction between ordinary and extraordinary means of preserving life, the topic of this chapter.

The second pillar is the agreement that there is a moral difference—and ought to be a legal difference—between killing (active euthanasia) and allowing to die. This will be the topic of chapters 2 and 7.

In the U.S. legal system, these two ethical bases have been combined with a basis in law, the legal concept of the right to autonomy, privacy, and liberty. This is the third pillar, which will be developed in chapters 3, 4, and 5. Taken together, these three pillars provide the foundation on which the present consensus concerning the moral and legal rightness of forgoing treatment has been built.

The first two of these pillars are well established within the Roman Catholic tradition, which had already developed, prior to the arrival of so-called American bioethics in the 1960s and 1970s, a detailed and complexly argued system of medical ethics. The only other tradition, religious or secular, to have done this is Jewish medical ethics, and that tradition, for various reasons that need not concern us here, has had a lesser impact on American secular medical ethics and American law than has the Catholic tradition. Indeed, it is probable that the current consensus would have been impossible had these concepts not already been developed in Catholic moral theology.

ORDINARY AND EXTRAORDINARY TREATMENT

The first pillar on which the current consensus is based is the general agreement that not all medical treatment that prolongs biological life is of benefit to the patient. Thus some life-sustaining treatment can be forgone.

The ethical distinction between mandatory and optional treatment has been provided by the Catholic tradition in its centuries-old distinction between “ordinary” and “extraordinary” means of preserving life, terms often used even in secular conversation and policies. The distinction goes back at least to the sixteenth century, was included in the important work of Alphonse Liguori in the eighteenth century, and was emphasized and made popular by the teaching of Pope Pius XII in the 1950s (Paris 1986, 31–32; Pius XII 1958, 395–96). It is essential to recognize that this is a moral distinction, not a medical one, and it relies on theological and philosophical understandings of the meaning of human life of which the practical implications, if not the theological bases, have largely been accepted. It is mostly a question of human benefit versus human burden.

There is no need here to go into detail about the history of the distinction. It is important to note, however, that there have been two different approaches among the moralists who have proposed it (Shannon and Walter 1988, 638). The more restrictive approach looked only to the burdens of the treatment itself. A treatment was said to be extraordinary if it was painful, caused great hardship, or was expensive. But the likely outcome, that is, the state of the patient after treatment, was not taken into consideration. The other approach, most often used today, weighs both the burdens and benefits of treatment. Here, even if the treatment itself may be inexpensive and not cause any great discomfort, it is extraordinary and therefore optional if the benefits it promises are slight or nonexistent when seen in the context of the patient’s overall condition. This second approach is the one used by Gerald Kelly, arguably the most important Catholic medical ethicist prior to the Second Vatican Council of 1962–65 (Kelly 1958, 129). His definition of extraordinary means, quoted by others (McFadden 1961, 227), is given clear approval in the Declaration on Euthanasia, an official document issued by the Vatican in 1980. The declaration states that “a correct judgment can be made regarding means, if the type of treatment, its degree of difficulty and danger, its expense, and the possibility of applying it are weighed against the results that can be expected, all this in the light of the sick person’s condition and resources of body and spirit” (Congregation for the Doctrine of the Faith 1998, 653). Precisely. The latest edition of the Ethical and Religious Directives for Catholic Health Care Services quotes this as its source in adopting the same approach (National Conference of Catholic Bishops 1995, Dirs. 56, 57). The catechism of the Catholic Church says in a similar vein, “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate” (Catechism 1994, 2278, 549).

VITALISM

The distinction between morally ordinary and morally extraordinary means of preserving life proposes a reasonable middle ground between vitalism and subjectivism, two extreme positions that are sometimes advocated. The first of these, an absolute vitalism, permits no cessation of efforts to prolong life. This position claims that life itself is the greatest possible value and it should be sustained at all costs.

A nurse once told me that she finally refused a physician’s fifty-second order for cardiopulmonary resuscitation (CPR) on the same patient within forty-eight hours. Here is vitalism in the worst possible sense of the term. Perhaps it was the doctor’s orders, or perhaps a surrogate was insisting that everything be done to keep the patient alive. Many hospital professionals have encountered situations in which a dying person’s relatives insist that everything be done to keep their loved one alive, perhaps out of guilt, from fear of being left alone, or from a belief that Jesus may perform a miracle. In this last case, I try to suggest, gently, that Jesus—or God—does not need ventilators and defibrillators for miracles, but I have met people who are sure they have an obligation to keep a dying loved one alive as long as possible in order to give God time. No theological explanation that God does not need more time, that the ventilator and the defibrillator have already been shown to be inadequate, and so on seems to help in these cases.

Catholic medical ethicists have never considered this kind of prolongation of dying as morally required or even as a particularly good option. Theologically, I believe that Catholics’ faith in the Resurrection has a good deal to do with this. The present life is to be treasured, but it is not all there is. Biological life need not be prolonged by extraordinary means.

SUBJECTIVISM

The other extreme position is a totally lax subjectivism that permits cessation of treatment, and even active killing, based only on the subjective choice of an individual. Here the idea that human life is of intrinsic value is rejected. Life is of value only if the individual gives value to it. I am convinced that there is too much of this in the United States, too much individualism, too much insistence on absolute subjective choice. I do not mean to suggest a preference for a totalitarian or authoritarian system in which government ordains our values, but we are, after all, social beings. We owe help to others precisely because they are of value, even if for some reason they have lost a sense of this themselves. And U.S. law has not moved all the way to the subjectivist extreme. Attempted suicide, for example, though not a crime, is still a reason for insisting on treatment, even involuntary commitment. While this can in some cases be ill advised, even hurtful, it is good for us to maintain the sense that human life is valuable even if an individual rejects that value. Human life, while not of absolute value, is always intrinsically valuable. Indeed, U.S. law recognizes that the state has an interest in preserving life, an interest in avoiding subjectivism.

Roman Catholic tradition has rejected both vitalism and subjectivism. It has recognized both the sanctity of life (life is sacred) and the ethical import of at least some aspects of the quality of life (life need not be prolonged under all circumstances). That is, at some point a lack of the ability to carry out humanly meaningful purposes, which some would term a lack of quality of life, means that life can be let go. This does not mean, however, that a person’s life loses its worth, that it ceases to be of intrinsic value. But it does mean that when, in an individual case, the benefits of continued living truly are outweighed by the burdens of the kind of life that is likely to result from life-sustaining treatment and/or by the burdens of the treatment itself, the treatment may be forgone. And Americans, as well as American law, have come to a consensus on this. There are times when enough is enough.

The distinction between ordinary and extraordinary means of preserving life, as I have noted, goes back several centuries. According to this tradition, one is not obliged to preserve one’s life by using measures that are morally extraordinary. The terms “ordinary” and “extraordinary” are useful, and I am hesitant to abandon them even in the face of some recent criticism. Critics do have a point, however, when they argue that these words are open to misinterpretation if the distinction is understood as a medical one (Congregation for the Doctrine of the Faith 1998, 653). It is, rather, a moral distinction, and there are no simple technical or statistical criteria for determining the difference. Means that are usually thought of as medically ordinary (no longer experimental, normal hospital procedures in some cases, not requiring Institutional Review Board protocol approval) may be morally extraordinary. Thus what would be an ordinary or reasonable means when used in caring for a person whose chance of renewed health is great would become extraordinary in the care of a patient who has little or no chance of recovery.

Other terms have been suggested and are in general use, but there is no pair that exactly replaces the nuances of “ordinary” and “extraordinary.” “Reasonable” and “unreasonable” work in some cases, but not in others. Unreasonable means that the treatment is irrational. This implies that it ought not be given, whereas extraordinary means that the patient may choose to reject the treatment, not that it must be rejected. The treatment is optional, not necessarily wrong. “Proportionate” and “disproportionate” suffer from the same problem, as well as from the difficulty of implying a methodology about which there is considerable disagreement. “Heroic” might work, but “nonheroic” is awkward, and these terms suffer from the same problem as do the more traditional “ordinary” and “extraordinary,” because they might imply that medical criteria determine the difference.

Some wish to avoid pair terms altogether and speak only of the right of autonomy, as this is guaranteed by U.S. law. But this is to restrict the issue to the legal aspects and the ethics of the law, ignoring what the Catholic tradition has properly included and what has been important in the American consensus, the moral rightness and wrongness of the decision itself. It is wrong to forgo ordinary means of preserving our lives, and there is a strong basis for this judgment. Briefly put, the dignity of human life means that we owe it to ourselves, to others, and in a very different way to God not to reject the gift of life. Because we have responsibilities to self, to others, and to God to take basic good care of ourselves, some treatments (morally ordinary) are obligatory whereas others (morally extraordinary) are optional. This is not just a decision that we make up (posit). It is a moral decision we make on the basis of what we discover objectively in the actual clinical situation.

EXAMPLES

Some examples will help clarify my statement that the distinction between ordinary and extraordinary means is a moral, not medical, one. When I give a lecture, I often ask my listeners what they would do if, right then and there, I should happen to grab my chest, groan, and fall over on the floor. The question is usually followed by silence—until someone finally says that she or he would check for a pulse and, if there is none, start CPR. Then someone else volunteers to call 911 (or, if we are in a hospital, to call a code). These, I tell them, are ordinary means of prolonging my life. In my present physical condition, I have a moral obligation to accept this treatment, to go to the emergency room and then the cardiac care unit, to take the thrombolytic agents to dissolve the blood clots, and so on. These are likely to be of real benefit to me, and objectively, this seems to outweigh the burdens. On the other hand, if we were all to come back in fifty years for an anniversary of the lecture, and I, at a very advanced age, with a multitude of diseases and previous insults, were to fall off my stretcher, gasp, and stop breathing, it would be morally right of me to have “DNR” (do not resuscitate) written on my forehead. The treatments for the cardiac arrest would be the same as before (or even more advanced), but humanly my circumstances would have changed. What was morally ordinary treatment for a person with a good chance for recovery has become morally extraordinary for one with little chance. The (human) benefits no longer outweigh the (human) burdens.

Another example concerns the use of antibiotics for pneumonia, surely a medically ordinary treatment. Yet it may be morally extraordinary for a person dying of cancer or some other serious condition. If I have been diagnosed with terminal cancer and have a few weeks to live, I might rightly see pneumonia as “the old man’s friend.” Of course, the medication might be morally ordinary, too—if, for example, I still had work I needed to do, such as preparing a will.

The criteria for distinguishing between morally ordinary and morally extraordinary means of prolonging life are not clean or precise. Though the distinction is an objective one in the sense that it is based on real situations, on real conditions, real prognoses, and so on, subjective elements come into play here—not subjectivism, but subjective elements. For example, a person who truly is terrified of surgery can rightly consider that fear in determining whether or not the burdens outweigh the benefits. Here terror is a real burden.

There is, then, no moral obligation to preserve life at all costs. Many factors must be weighed in this decision: the chance of success, the degree of invasiveness, pain, and patient fear, the likely outcome, the social cost (this can be quite risky, of course, and demands caution, especially in a health care system that refuses to recognize the right of all to basic care), the needs of others, the patient’s readiness for death, and the patient’s likely condition after successful treatment or partial success. And a person may rightly consider financial costs among the burdens. The Catholic tradition is clear about this. The sick need not sacrifice the financial survival of their families to prolong life, certainly not when the treatment is of questionable benefit and perhaps not even when the treatment is almost surely a cure. In earlier centuries, even the sense of shame or modesty a woman might feel when being examined by a male physician was sometimes said to be sufficient reason for calling the treatment extraordinary. Of course, in those days doctors were unlikely to cure, so there was far less likelihood that the treatment would do any good. The point, however, is that the distinction, as developed in Catholic medical ethics, is a flexible one.

DRAWING THE LINE

One can describe various treatments as though they were located along a spectrum. On one end are clearly ordinary means of prolonging life: treatments such as antibiotics for pneumonia in otherwise healthy people, appendectomies, or even behaviors such as good eating habits, sufficient exercise and sleep, and so on. Then come means that most would consider ordinary but that might be extraordinary for some conditions or for some persons. After that come morally extraordinary treatments that people would be likely to consider reasonable but not obligatory—a third round of chemotherapy, for example, that might offer a small but real hope of remission for some months. A person might choose it or reject it; it is morally optional. Then, farther along on the spectrum, there are some treatments most of us would consider not only extraordinary but also unreasonable, even silly or stupid. I put feeding tubes for the irreversibly comatose in this category; yet some people, even some Catholic bishops, claim the tubes are morally required (as they did in the case of Terri Schiavo, the Florida woman said to be in a persistent vegetative state). I will return to this in chapter 6. Finally, at the extreme end of the spectrum come those procedures that are “medically futile” in the strict sense. I will examine these in detail in chapter 8.

With the exception of this last category, medical futility, the lines between the others can not be clearly drawn. There are often conflicts among those involved—patients, families, physicians,...