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Who Shall Live When Not All Can Live?

2013; Penn State University Press; Volume: 96; Issue: 3 Linguagem: Inglês

10.5325/soundings.96.3.0237

2161-6302

James F. Childress,

Ethics and Legal Issues in Pediatric Healthcare

Who shall live when not all can live? Although this question has been urgently forced upon us by the dramatic use of artificial internal organs and organ transplantations, it is hardly new. George Bernard Shaw dealt with it in "The Doctor's Dilemma": Sir Patrick.Well, Mr. Savior of Lives: which is it to be? That honest decent man Blenkinsop, or that rotten blackguard of an artist, eh?Ridgeon.It's not an easy case to judge, is it? Blenkinsop's an honest decent man; but is he any use? Dubedat's a rotten blackguard; but he's a genuine source of pretty and pleasant and good things.Sir Patrick.What will he be a source of for that poor innocent wife of his, when she finds him out?Ridgeon.That's true. Her life will be a hell.Sir Patrick.And tell me this. Suppose you had this choice put before you: either to go through life and find all the pictures bad but all the men and women good, or go through life and find all the pictures good and all the men and women rotten. Which would you choose?1 A significant example of the distribution of scarce medical resources is seen in the use of penicillin shortly after its discovery. Military officers had to determine which soldiers would be treated—those with venereal disease or those wounded in combat.2 In many respects such decisions have become routine in medical circles. Day after day physicians and others make judgments and decisions "about allocations of medical care to various segments of our population, to various types of hospitalized patients, and to specific individuals,"3 for example, whether mental illness or cancer will receive the higher proportion of available funds. Nevertheless, the dramatic forms of "Scarce Life-Saving Medical Resources" (hereafter abbreviated as SLMR) such as hemodialysis and kidney and heart transplants have compelled us to examine the moral questions that have been concealed in many routine decisions. I do not attempt in this paper to show how a resolution of SLMR cases can help us in the more routine ones which do not involve a conflict of life with life. Rather I develop an argument for a particular method of determining who shall live when not all can live. No conclusions are implied about criteria and procedures for determining who shall receive medical resources that are not directly related to the preservation of life (e.g. corneal transplants) or about standards for allocating money and time for studying and treating certain diseases.Just as current SLMR decisions are not totally discontinuous with other medical decisions, so we must ask whether some other cases might, at least by analogy, help us develop the needed criteria and procedures. Some have looked at the principles at work in our responses to abortion, euthanasia, and artificial insemination.4 Usually they have concluded that these cases do not cast light on the selection of patients for artificial and transplanted organs. The reason is evident: in abortion, euthanasia, and artificial insemination, there is no conflict of life with life for limited but indispensable resources (with the possible exception of therapeutic abortion). In current SLMR decisions, such a conflict is inescapable, and it makes them so morally perplexing and fascinating. If analogous cases are to be found, I think that we shall locate them in moral conflict situations.An especially interesting and pertinent one is U.S. v. Holmes.5 In 1841 an American ship, the William Brown, which was near Newfoundland on a trip from Liverpool to Philadelphia, struck an iceberg. The crew and half the passengers were able to escape in the two available vessels. One of these, a longboat, carrying too many passengers and leaking seriously, began to founder in the turbulent sea after about twenty-four hours. In a desperate attempt to keep it from sinking, the crew threw over board fourteen men. Two sisters of one of the men either jumped overboard to join their brother in death or instructed the crew to throw them over. The criteria for determining who should live were "not to part man and wife, and not to throw over any women." Several hours later the others were rescued. Returning to Philadelphia, most of the crew disappeared, but one, Holmes, who had acted upon orders from the mate, was indicted, tried, and convicted on the charge of "unlawful homicide."We are interested in this case from a moral rather than a legal standpoint, and there are several possible responses to and judgments about it. Without attempting to be exhaustive I shall sketch a few of these. The judge contended that lots should have been cast, for in such conflict situations, there is no other procedure "so consonant both to humanity and to justice." Counsel for Holmes, on the other hand, maintained that the "sailors adopted the only principle of selection which was possible in an emergency like theirs,—a principle more humane than lots."Another version of selection might extend and systematize the maxims of the sailors in the direction of "utility"; those are saved who will contribute to the greatest good for the greatest number. Yet another possible option is defended by Edmond Cahn in The Moral Decision. He argues that in this case we encounter the "morals of the last days." By this phrase he indicates that an apocalyptic crisis renders totally irrelevant the normal differences between individuals. He continues, In a strait of this extremity, all men are reduced—or raised, as one may choose to denominate it—to members of the genus, mere congeners and nothing else. Truly and literally, all were "in the same boat," and thus none could be saved separately from the others. I am driven to conclude that otherwise—that is, if none sacrifice themselves of free will to spare the others—they must all wait and die together. For where all have become congeners, pure and simple, no one can save himself by killing another.6 Cahn's answer to the question "who shall live when not all can live" is "none" unless the voluntary sacrifice by some persons permits it.Few would deny the importance of Cahn's approach although many, including this writer, would suggest that it is relevant mainly as an affirmation of an elevated and, indeed, heroic or saintly morality which one hopes would find expression in the voluntary actions of many persons trapped in "borderline" situations involving a conflict of life with life. It is a maximal demand which some moral principles impose on the individual in the recognition that self-preservation is not a good which is to be defended at all costs. The absence of this saintly or heroic morality should not mean, however, that everyone perishes. Without making survival an absolute value and without justifying all means to achieve it, we can maintain that simply letting everyone die is irresponsible. This charge can be supported from several different standpoints, including society at large as well as the individuals involved. Among a group of self-interested individuals, none of whom volunteers to relinquish his life, there may be better and worse ways of determining who shall survive. One task of social ethics, whether religious or philosophical, is to propose relatively just institutional arrangements—which criteria and procedures of selection is most satisfactory in view of the human condition (man's limited altruism and inclination to seek his own good) and the conflicting values that are to be realized?There are several significant differences between the Holmes and SLMR cases, a major one being that the former involves direct killing of another person, while the latter involve only permitting a person to die when it is not possible to save all. Furthermore, in extreme situations such as Holmes, the restraints of civilization have been stripped away, and something approximating a state of nature prevails, in which life is "solitary, poor, nasty, brutish and short." The state of nature does not mean that moral standards are irrelevant and that might should prevail, but it does suggest that much of the matrix which normally supports morality has been removed. Also the necessary but unfortunate decisions about who shall live and die are made by men who are existentially and personally involved in the outcome. Their survival too is at stake. Even though the institutional role of sailors seems to require greater sacrificial actions, there is obviously no assurance that they will adequately assess the number of sailors required to man the vessel or that they will impartially and objectively weigh the common good at stake. As the judge insisted in his defense of casting lots in the Holmes case: "In no other than this [casting lots] or some like way are those having equal rights put upon an equal footing, and in no other way is it possible to guard against partiality and oppression, violence, and conflict." This difference should not be exaggerated since self-interest, professional pride, and the like obviously affect the outcome of many medical decisions. Nor do the remaining differences cancel Holmes' instructiveness.Which set of arrangements should be adopted for SLMR? Two questions are involved: Which standards and criteria should be used? And, Who should make the decision? The first question is basic, since the debate about implementation, e.g. whether by a lay committee or physician, makes little progress until the criteria are determined.We need two sets of criteria which will be applied at two different stages in the selection of recipients of SLMR. First, medical criteria should be used to exclude those who are not "medically acceptable." Second, from this group of "medically acceptable" applicants, the final selection can be made. Occasionally in current American medical practice, the first stage is omitted, but such an omission is unwarranted. Ethical and social responsibility would seem to require distributing these SLMR only to those who have some reasonable prospect of responding to the treatment. Furthermore, in transplants such medical tests as tissue and blood typing are necessary, although they are hardly fully developed."Medical acceptability" is not as easily determined as many non-physicians assume since there is considerable debate in medical circles about the relevant factors (e.g., age and complicating diseases). Although ethicists can contribute little or nothing to this debate, two proposals may be in order. First, "medical acceptability" should be used only to determine the group from which the final selection will be made, and the attempt to establish fine degrees of prospective response to treatment should be avoided. Medical criteria, then, would exclude some applicants but would not serve as a basis of comparison between those who pass the first stage. For example, if two applicants for dialysis were medically acceptable, the physicians would not choose the one with the better medical prospects. Final selection would be made on other groups. Second, psychological and environmental factors should be kept to an absolute minimum and should be considered only when they are without doubt critically related to medical acceptability (e.g., the inability to cope with the requirements of dialysis which might lead to suicide).7The most significant moral questions emerge when we turn to the final selection. Once the pool of medically acceptable applicants has been defined and still the number is larger than the resources, what other criteria should be used? How should the final selection be made? First, I shall examine some of the difficulties that stem from efforts to make the final selection in terms of social value; these difficulties raise serious doubts about the feasibility and justifiability of the utilitarian approach. Then I shall consider the possible justification for random selection or chance.Occasionally criteria of social worth focus on past contributions but most often they are primarily future oriented. The patient's potential and probable contribution to the society is stressed, although this obviously cannot be abstracted from his present web of relationships (e.g., dependents) and occupational activities (e.g., nuclear physicist). Indeed, the magnitude of his contribution to society (as an abstraction) is measured in terms of these social roles, relations, and functions. Enough has already been said to suggest the tremendous range of factors that affect social value or worth.8 Here we encounter the first major difficulty of this approach: How do we determine the relevant criteria of social value?The difficulties of quantifying various social needs are only too obvious. How does one quantify and compare the needs of the spirit (e.g., education, art, religion), political life, economic activity, technological development? Joseph Fletcher suggests that "some day we may learn how to 'quantify' or 'mathematicate' or 'computerize' the value problem in selection, in the same careful and thorough way that diagnosis has been."9 I am not convinced that we can ever quantify values, or that we should attempt to do so. But even if the various social and human needs, in principle, could be quantified, how do we determine how much weight we will give to each one? Which will have priority in case of conflict? Or even more basically, in the light of which values and principles do we recognize social "needs"?One possible way of determining the values which should be emphasized in selection has been proposed by Leo Shatin.10 He insists that our medical decisions about allocating resources are already based on an unconscious scale of values (usually dominated by material worth). Since there is really no way of escaping this, we should be self-conscious and critical about it. How should we proceed? He recommends that we discover the values that most people in our society hold and then use them as criteria for distributing SLMR. These values can be discovered by attitude or opinion surveys. Presumably if fifty-one percent in this testing period put a greater premium on military needs than technological development, military men would have a greater claim on our SLMR than experimental researchers. But valuations of what is significant change, and the student revolutionary who was denied SLMR in 1970 might be celebrated in 1990 as the greatest American hero since George Washington.Shatin presumably is seeking criteria that could be applied nationally, but at the present, regional and local as well as individual prejudices tincture the criteria of social value that are used in selection. Nowhere is this more evident than in the deliberations and decisions of the anonymous selection committee of the Seattle Artificial Kidney Center where such factors as church membership and Scout leadership have been deemed significant for determining who shall live.11 As two critics conclude after examining these criteria and procedures, they rule out "creative nonconformists, who rub the bourgeoisie the wrong way but who historically have contributed so much to the making of America. The Pacific Northwest is no place for a Henry David Thoreau with bad kidneys."12Closely connected to this first problem of determining social values is a second one. Not only is it difficult if not impossible to reach agreement on social values, but it is also rarely easy to predict what our needs will be in a few years and what the consequences of present actions will be. Furthermore it is difficult to predict which persons will fulfill their potential function in society. Admissions committees in colleges and universities experience the frustrations of predicting realization of potential. For these reasons, as someone has indicated, God might be a utilitarian, but we cannot be. We simply lack the capacity to predict very accurately the consequences which we then must evaluate. Our incapacity is never more evident than when we think in societal terms.Other difficulties make us even less confident that such an approach to SLMR is advisable. Many critics raise the specter of abuse, but this should not be overemphasized. The fundamental difficulty appears on another level: the utilitarian approach would in effect reduce the person to his social role, relations, and functions. Ultimately it dulls and perhaps even eliminates the sense of the person's transcendence, his dignity as a person which cannot be reduced to his past or future contribution to society. It is not at all clear that we are willing to live with these implications of utilitarian selection. Wilhelm Kolff, who invented the artificial kidney, has asked: "Do we really subscribe to the principle that social standing should determine selection? Do we allow patients to be treated with dialysis only when they are married, go to church, have children, have a job, a good income, and give to the Community Chest?"13The German theologian Helmut Thielicke contends that any search for "objective criteria" for selection is already a capitulation to the utilitarian point of view which violates man's dignity.14 The solution is not to let all die, but to recognize that SLMR cases are "borderline situations" which inevitably involve guilt. The agent, however, can have courage and freedom (which, for Thielicke, come from justification by faith) and can go ahead anyway and seek for criteria for deciding the question of life or death in the matter of the artificial kidney. Since these criteria are… questionable, necessarily alien to the meaning of human existence, the decision to which they lead can be little more than that arrived at by casting lots.15 The resulting criteria, he suggests, will probably be very similar to those already employed in American medical practice.He is most concerned to preserve a certain attitude or disposition in SLMR—the sense of guilt which arises when man's dignity is violated. With this sense of guilt, the agent remains "sound and healthy where it really counts."16 Thielicke uses man's dignity only as a judgmental, critical, and negative standard. It only tells us how all selection criteria and procedures (and even the refusal to act) implicate us in the ambiguity of the human condition and its metaphysical guilt. This approach is consistent with his view of the task of theological ethics: "to teach us how to understand and endure—not 'solve'—the borderline situation."17 But ethics, I would contend, can help us discern the factors and norms in whose light relative, discriminate judgments can be made. Even if all actions in SLMR should involve guilt, some may preserve human dignity to a greater extent than others. Thielicke recognizes that a decision based on any criteria is "little more than that arrived at by casting lots." But perhaps selection by chance would come the closest to embodying the moral and nonmoral values that we are trying to maintain (including a sense of man's dignity).My proposal is that we use some form of randomness or chance (either natural, such as "first come, first served," or artificial, such as a lottery) to determine who shall be saved. Many reject randomness as a surrender to non-rationality when responsible and rational judgments can and must be made. Edmond Cahn criticizes "Holmes' judge" who recommended the casting of lots because, as Cahn puts it, "the crisis involves stakes too high for gambling and responsibilities too deep for destiny."18 Similarly, other critics see randomness as a surrender to "non-human" forces which necessarily vitiates human values. Sometimes these values are identified with the process of decision-making (e.g., it is important to have persons rather than impersonal forces determining who shall live). Sometimes they are identified with the outcome of the process (e.g., the features such as creativity and fullness of being which make human life what it is are to be considered and respected in the decision). Regarding the former, it must be admitted that the use of chance seems cold and impersonal. But presumably the defenders of utilitarian criteria in SLMR want to make their application as objective and impersonal as possible so that subjective bias does not determine who shall live.Such criticisms, however, ignore the moral and nonmoral values which might be supported by selection by randomness or chance. A more important criticism is that the procedure that I develop draws the relevant moral context too narrowly. That context, so the argument might run, includes the society and its future and not merely the individual with his illness and claim upon SLMR. But my contention is that the values and principles at work in the narrower context may well take precedence over those operative in the broader context both because of their weight and significance and because of the weaknesses of selection in terms of social worth. As Paul Freund rightly insists, "The more nearly total is the estimate to be made of an individual, and the more nearly the consequence determines life and death, the more unfit the judgment becomes for human reckoning… Randomness as a moral principle deserves serious study."19 Serious study would, I think, point toward is implementation in certain conflict situations, primarily because it preserves a significant degree of personal dignity by providing equality of opportunity. Thus it cannot be dismissed as a "non-rational" and "non-human" procedure without an inquiry into the reasons, including human values, which might justify it. Paul Ramsey stresses this point about the Holmes case: Instead of fixing our attention upon "gambling" as the solution—with all the frivolous and often corrupt associations the word raises in our minds—we should think rather of equality of opportunity as the ethical substance of the relations of those individuals to one another that might have been guarded and expressed by casting lots.20 The individual's personal and transcendent dignity, which on the utilitarian approach would be submerged in his social role and function, can be protected and witnessed to by a recognition of his equal right to be saved. Such a right is best preserved by procedures which establish equality of opportunity. Thus selection by chance more closely approximates the requirements established by human dignity than does utilitarian calculation. It is not infallibly just, but it is preferable to the alternatives of letting all die or saving only those who have the greatest social responsibilities and potential contribution.This argument can be extended by examining values other than individual dignity and equality of opportunity. Another basic value in the medical sphere is the relationship of trust between physician and patient. Which selection criteria are most in accord with this relationship of trust? Which will maintain, extend, and deepen it? My contention is that selection by randomness or chance is preferable from this standpoint too.Trust, which is inextricably bound to respect for human dignity, is an attitude of expectation about another. It is not simply the expectation that another will perform a particular act, but more specifically that another will act toward him in certain ways—which will respect him as a person. As Charles Fried writes: Although trust has to do with reliance on a disposition of another person, it is reliance on a disposition of a special sort: the disposition to act morally, to deal fairly with others, or live up to one's undertakings, and so on. Thus to trust another is first of all to expect him to accept the principle of morality in his dealings with you, to respect your status as a person, your personality.21 This trust cannot be preserved in life-and-death situations when a person expects decisions about him to be made in terms of his social worth, for such decisions violate his status as a person. An applicant rejected on grounds of inadequacy in social value or virtue would have reason for feeling that his "trust" had been betrayed. Indeed, the sense that one is being viewed not as an end in himself but as a means in medical progress or the achievement of a greater social good is incompatible with attitudes and relationships of trust. We recognize this in the billboard which was erected after the after the first heart transplants: "Drive Carefully. Christian Barnard Is Watching You." The relationship of trust between the physician and patient is not only an instrumental value in the sense of being an important factor in the patient's treatment. It is also to be endorsed because of its intrinsic worth as a relationship.Thus the related values of individual dignity and trust are best maintained in selection by chance. But other factors also buttress the argument for this approach. Which criteria and procedures would men agree upon? We have to suppose a hypothetical situation in which several men are going to determine for themselves and their families the criteria and procedures by which they would want to be admitted to and excluded from SLMR if the need arose.22 We need to assume two restrictions and then ask which set of criteria and procedures would be chosen as the most rational and, indeed, the fairest. The restrictions are these: (1) The men are self-interested. They are interested in their own welfare (and that of members of their families), and this, of course, includes survival. Basically, they are not motivated by altruism. (2) Furthermore, they are ignorant of their own talents, abilities, potential, and probably contribution to the social good. They do not know how they would fare in a competitive situation, e.g., the competition for SLMR in terms of social contribution. Under these conditions which institution would be chosen—letting all die, utilitarian selection, or the use of chance? Which would seem the most rational? The fairest? By which set of criteria would they want to be included in or excluded from the list of those who will be saved? The rational choice in this setting (assuming self-interest and ignorance of one's competitive success) would be random selection or chance since this alone provides equality of opportunity. A possible response is that one would prefer to take a "risk" and therefore choose the utilitarian approach. But I think not, especially since I added that the participants in this hypothetical situation are choosing for their children as well as for themselves; random selection or chance could be more easily justified to the children. It would make more sense for men who are self-interested but uncertain about their relative contribution to society to elect a set of criteria which would build in equality of opportunity. They would consider selection by chance as relatively just and fair.23An important psychological point supplements earlier arguments for using chance or random selection. The psychological stress and strain among those who are rejected would be greater if the rejection is based on insufficient social worth than if it is based on chance. Obviously stress and strain cannot be eliminated in these borderline situations, but they would almost certainly be increased by the opprobrium of being judged relatively "unfit" by society's agents using society's values. Nicholas Rescher makes this point very effectively: A recourse to chance would doubtless make matters easier for the rejected patient and those who have a specific interest in him. It would surely be quite hard for them to accept his exclusion by relatively mechanical application of objective criteria in whose implementation subjective judgment is involved. But the circumstances of life have conditioned us to accept the workings of chance and to tolerate the element of luck (good or bad): human life is an inherently contingent process. Nobody, after all, has an absolute right to ELT [Exotic Lifesaving Therapy]—but most of us would feel that we have "every bit as much right" to it as anyone else in significantly similar circumstances.24 Although it is seldom recognized as such, selection by chance is already in operation in practically every dialysis unit. I am not aware of any unit which removes some of its patients from kidney machines in order to make room for later applicants who are better qualified in terms of social worth. Furthermore, very few people would recommend it. Indeed, few would even consider removing a person from a kidney machine on the grounds that a person better qualified medically had just applied. In a discussion of the treatment of chronic renal failure by dialysis at the University of Virginia Hospital Renal Unit from November 15, 1965 to November 15, 1966, Dr. Harry Abram writes: "Thirteen patients sought treatment but were not considered because the program had reached its limit of nine patients."25 Thus, in practice and theory, natural chance is accepted at least within certain limits.My proposal is that we extend this principle (first come, first served) to determine who among the medically acceptable patients shall live or that we utilize artificial chance such as a lottery or randomness. "First come, first served" would be more feasible than a lottery since the applicants make their claims over a period of time rather than as a group at one time. This procedure would be in accord with at least one principle in our present practices and with our sense of individual dignity, trust, and fairness. Its significance in relation to these values can be underlined by asking how the decision can be justified to the rejected applicant. Of course, one easy way of avoiding this task is to maintain the traditional cloak of secrecy, which works to a great extent because patients are often not aware that they are being considered for SLMR in addition to the usual treatment. But whether public justification is instituted or not is not the significant question; it is rather what reasons for rejection would be most acceptable to the unsuccessful applicant. My contention is that rejection can be accepted more readily if equality of opportunity, fairness, and trust are preserved, and that they are best preserved by selection by randomness or chance.This proposal has yet another advantage since it would eliminate the need for a committee to examine applicants in terms of their social value. This onerous responsibility can be avoided.Finally, there is a possible indirect consequence of widespread use of random selection which is interesting to ponder, although I do not adduce it as a good reason for adopting random selection. It can be argued, as Professor Mason Willrich of the University of Virginia Law School has suggested, that SLMR cases would practically disappear if these scarce resources were distributed randomly rather than on social worth grounds. Scarcity would no longer be a problem because the holders of economic and political power would make certain that they would not be excluded by a random selection procedure; hence they would help to redirect public priorities or establish private funding so that life-saving medical treatment would be widely and perhaps universally available.In the framework that I have delineated, are the decrees of chance to be taken without exception? If we recognize exceptions, would we not open Pandora's box again just after we had succeeded in getting it closed? The direction of my argument has been against any exceptions, and I would defend this as the proper way to go. But let me indicate one possible way of admitting exceptions while at the same time circumscribing them so narrowly that they would be very rare indeed.An obvious advantage of the utilitarian approach is that occasionally circumstances arise which make it necessary to say that one man is practically indispensable for a society in view of a particular set of problems it faces (e.g., the President when the nation is waging a war for survival). Certainly the argument to this point has stressed that the burden of proof would fall on those who think that the social danger in this instance is so great that they simply cannot abide by the outcome of a lottery or a first come, first served policy. Also, the reason must be negative rather than positive; that is, we depart from chance in this instance not because we want to take advantage of this person's potential contribution to the improvement of our society, but because his immediate loss would possibly (even probably) be disastrous (again, the President in a grave national emergency). Finally, social value (in the negative sense) should be used as a standard of exception in dialysis, for example, only if it would provide a reason strong enough to warrant removing another person from a kidney machine if all machines were taken. Assuming this strong reluctance to remove anyone once the commitment has been made to him, we would be willing to put this patient ahead of another applicant for a vacant machine only if we would be willing (in circumstances in which all machines are being used) to vacate a machine by removing someone from it. These restrictions would make an exception almost impossible.While I do not recommend this procedure of recognizing exceptions, I think that one can defend it while accepting my general thesis about selection by randomness or chance. If it is used, a lay committee (perhaps advisory, perhaps even stronger) would be called upon to deal with the alleged exceptions since the doctors or others would in effect be appealing the outcome of chance (either natural or artificial). This lay committee would determine whether this patient was so indispensable at this time and place that he had to be saved even by sacrificing the values preserved by random selection. It would make it quite clear that exception is warranted, if at all, only as the "lesser of two evils." Such a defense would be recognized only rarely, if ever, primarily because chance and randomness preserve so many important moral and nonmoral values in SLMR cases.26