Lying and Lies to the Sick and Dying
By Sissela Bok
[From Lying: Moral Choice in Public and Private Life (New York' Pantheon. 1978) -- selections from chapters I, 2, 6. 14. and 15]
TRUTH AND TRUTHFULNESS
..."Truth"- no concept intimidates and yet draws thinkers so powerfully. From the beginnings of human speculation about the world, the questions of what truth is and whether we can attain it have loomed large. Every philosopher has had to grapple with them. Every religion seeks to answer them. ...
In all such speculation, there is great risk of a conceptual muddle, of not seeing the crucial differences between two domains: the moral domain of intended truthfulness and deception, and the much vaster domain of truth and falsity in general. The moral question of whether you are lying or not is not settled by establishing the truth or falsity of what you say. In order to settle this question, we must know whether you intend your statement to mislead. ...
Any number of appearances and words can mislead us; but only a fraction of them are intended to do so. A mirage may deceive us, through no one's fault. Our eyes deceive us all the time. We are beset by self-delusion and bias of every kind. Yet we often know when we mean to be honest or dishonest. Whatever the essence of truth and falsity, and whatever the sources of error in our lives, one such source is surely the human agent, receiving and giving out information, intentionally deflecting, withholding, even distorting it at times. ...
We must single out, therefore, from the countless ways in which we blunder misinformed through life, that which is done with the intention to mislead; and from the countless partial stabs at truth, those which are intended to be truthful. Only if this distinction is clear will it be possible to ask the moral question with rigor. And it is to this question alone-the intentional manipulation of in- formation-that the court addresses itself in its request for "the truth, the whole truth, and nothing but the truth."
DEFINING INTENTIONAL DECEPTION AND LYING
When we undertake to deceive others intentionally, we communicate messages meant to mislead them, meant to make them believe what we ourselves do not believe. We can do so through gesture, through disguise, by means of action or inaction, even through silence. Which of these innumerable deceptive messages are also lies? I shall define as a lie any intentionally deceptive message which is stated. Such statements are most often made verbally or in writing, but can of course also be conveyed via smoke signals, Morse code, sign language, and the like. Deception, then, is the larger category , and lying forms part of it. ...
LYING AND CHOICE
Deceit and violence-these are the two forms of deliberate assault on human beings. Both can coerce people into acting against their will. Most harm that can befall victims through violence can come to them also through deceit. But deceit controls more subtly, for it works on belief as well as action. Even Othello, whom few would have dared to try to subdue by force, could be brought to destroy himself and Desdemona through falsehood. The knowledge of this coercive element in deception, and of our vulnerability to it, underlies our sense of the centrality of truthfulness. ...
All our choices depend on our estimates of what is the case; these estimates must in turn often rely on information from others. Lies distort this information and therefore our situation as we perceive it, as well as our choices.
THE PERSPECTIVE OF THE DECEIVED
Those who learn that they have been lied to in an important matter -say, the identity of their parents, the affection of their spouse, or the integrity of their government-are resentful, disappointed, and suspicious. They feel wronged; they are wary of new overtures. And they look back on their past beliefs and actions in the new light of the discovered lies. They see that they were manipulated, that the deceit made them unable to make choices for themselves according to the most adequate information available, unable to act as they would have wanted to act had they known all along.
It is true, of course, that personal, informed choice is not the only kind available to them. They may decide to abandon choosing for themselves and let others decide for them-as guardians, financial advisors, or political representatives. They may even decide to abandon choice based upon information of a conventional nature altogether and trust instead to the stars or to throws of the dice or to soothsayers.
But such alternatives ought to be personally chosen and not surreptitiously imposed by lies or other forms of manipulation. Most of us would resist loss of control over which choices we want to delegate to others and which ones we want to make ourselves, aided by the best information we can obtain. We resist because experience has taught
us the consequences when others choose to deceive us, even "for our own good." Of course, we know that many lies are trivial. But since we, when lied to, have no way to judge which lies are the trivial ones, and since we have no confidence that liars will restrict themselves to just such trivial lies, the perspective of the deceived leads us to be wary of all deception. ...
Deception, then, can be coercive. When it succeeds, it can give power to the deceiver-power that all who suffer the consequences of lies would not wish to abdicate. ...
THE PRINCIPLE OF VERACITY
...I believe that we must at the very least accept as an initial premise Aristotle's view that lying is "mean and culpable" and that truthful statements are preferable to lies in the absence of special considerations. This premise gives an initial negative weight to lies. It holds that they are not neutral from the point of view of our choices; that lying requires explanation, whereas truth ordinarily does not. It provides a counterbalance to the crude evaluation by liars of their own motives and of the consequences of their lies. And it places the burden of proof squarely on those who assume the liar's perspective.
This presumption against lying can also be stated so as to stress the positive worth of truthfulness or veracity. I would like … to refer to the "principle of veracity" as an expression of this initial imbalance in our weighing of truthfulness and lying. ...
TYPES OF EXCUSES
What is it, then, that can conflict with the requirement for truthfulness so as to make lies permissible at times? Say you are caught in a compromising lie. What excuses might you offer? What kinds of excuses?
An excuse seeks to extenuate, sometimes to remove the blame entirely from something which would otherwise be a fault. It can seek to extenuate in three ways. First, it can suggest that what is seen as a fault is not really one. Secondly, it can suggest that, though there has been a fault, the agent is not really blameworthy, because he is not responsible. And finally, it can suggest that, though there has been a fault, and though the agent is responsible, he is not really to blame because he has good reasons to do as he did.
(a) Excuses of the first type may claim that the supposed lie is not really a lie, but a joke, perhaps, or an evasion, an exaggeration, a flight of fancy. Or else such an excuse may argue that since it is impossible to give objective distinctions between truth and falsehood, the supposed lie cannot be proved to be one.
(b) The second type of excuse holds that, though there may have been deception, the agent is not really or not completely responsible. The liar may claim he never meant to mislead, or was incompetent, perhaps drunk, or talking in his sleep, or coerced into deceiving. Or else he may take refuge in arguing that no one can ever be held responsible for lies, that free choice in that respect is a myth.
Both these types of excuses obviously cover a vast territory and are in constant use by liars. But it is the third type which will be the focus of [our] attention … - the type of excuse which is most fundamental for the process of evaluating deliberate lies. In this third type of excuse, the liar admits the lie, accepts responsibility for it, but offers reasons to show that he should be partially or even wholly cleared of blame. All three kinds of excuses are often present in the same effort to extenuate anyone lie. ...
(c) The third type of excuse, then, offers moral reasons for a lie, reasons to show that a lie ought, under the circumstances, to be allowed.
PATERNALISM
...To act paternalistically is to guide and even coerce people in order to protect them and serve their best interests, as a father might his children. ... The need for some paternalistic restraints is obvious. We survive only if protected from harm as children. Even as adults, we tolerate a number of regulations designed to reduce dangers such as those of infection or accidents. But it is equally obvious that the intention of guarding from harm has led, both through mistake and through abuse, to great suffering. The "protection" can suffocate; it can also exploit. Throughout history, men, women, and children have been compelled to accept de- grading work, alien religious practices, institutionalization, and even wars alleged to "free" them, all in the name of what someone has declared to be their own best interest. And deception may well have outranked force as a means of subjection: duping people to conform, to embrace ideologies and cults-never more zealously perpetrated than by those who believe that the welfare of those deceived is at issue.
Apart from guidance and persuasion, the paternalist can manipulate in two ways: through force and through deception.
One reason for the appeal of paternalistic lies is that they, unlike so much deception, are felt to be without bias and told in a disinterested wish to be helpful to fellow human beings in need. On closer examination, however, this objectivity and disinterest are often found to be spurious. The benevolent motives claimed by liars are then seen to be mixed with many others much less altruistic-the fear of confrontation which would accompany a more outspoken acknowledgment of the liar's feelings and intentions; the desire to avoid setting in motion great pressures to change, as where addiction or infidelity are no longer concealed; the urge to maintain the power that comes with duping others (never greater than when those lied to are defenseless or in need of care). These are motives of self-protection and of manipulation, of wanting to retain control over a situation and to remain a free agent. So long as the liar does not see them clearly, his judgment that his lies are altruistic and thus excused is itself biased and unreliable.
The perspective of the deceived, then, challenges the "helpfulness" of many paternalistic lies. It questions, moreover, even the benefits that are thought to accrue to the liar .The effects of deception on the liars themselves-the need to shore up lies, keep them in good repair, the anxieties relating to possible discovery , the entanglements and threats to integrity-are greatest in a close relationship where it is rare that one lie will suffice. It can be very hard to maintain the deceit when one is in close contact with those one lies to. The price of "living a lie" often turns out not even to have been worth the gains for the liars themselves.
JUSTIFICATION?
The two simplest approaches to paternalistic lying, then, have to be ruled out. It is not all right to lie to people just because they are children, or unable to judge what one says, or indeed because they belong to any category of persons at all. And the simple conviction voiced by Luther and so many others that the "helpful lie" is excused by its own altruism is much too uncritical. It allows far too many lies to go unquestioned. Both of these views fail to take into consideration the harm that comes from lying, not only to the deceived but to the liars and to the bonds they share.
DECEPTION AS THERAPY
A forty-six-year-old man, coming to a clinic for a routine physical check-up needed for insurance purposes, is diagnosed as having a form of cancer likely to cause him to die within six months. No known cure exists for it. Chemotherapy may prolong life by a few extra months, but will have side effects the physician does not think warranted in this case. In addition, he believes that such therapy should be reserved for patients with a chance for recovery or remission. The patient has no symptoms giving him any reason to believe that he is not perfectly healthy. He expects to take a short vacation in a week.
For the physician, there are now several choices involving truthfulness. Ought he to tell the patient what he has learned, or conceal it? If asked, should he deny it? If he decides to reveal the diagnosis, should he delay doing so until after the patient returns from his vacation? Finally, even if he does reveal the serious nature of the diagnosis, should he mention the possibility of chemotherapy and his reasons for not recommending it in this case? Or should he encourage every last effort to postpone death?
In this particular case, the physician chose to inform the patient of his diagnosis right away. He did not, however, mention the possibility of chemotherapy. A medical student working under him disagreed; several nurses also thought that the patient should have been informed of this possibility. They tried, unsuccessfully, to persuade the physician that this was the patient's right. When persuasion had failed, the student elected to disobey the doctor by informing the patient of the alternative of chemotherapy. After consultation with family members, the patient chose to ask for the treatment.
Doctors confront such choices often and urgently. What they reveal, hold back, or distort will matter profoundly to their patients. Doctors stress with corresponding vehemence their reasons for the distortion or concealment: not to confuse a sick person needlessly, or cause what may well be unnecessary pain or discomfort, as in the case of the cancer patient; not to leave a patient without hope, as in those many cases where the dying are not told the truth about their condition; or to improve the chances of cure, as where unwarranted optimism is expressed about some form of therapy. Doctors use information as part of the therapeutic regimen; it is given out in amounts, in admixtures, and according to timing believed best for patients. Accuracy, by comparison, matters far less.
Lying to patients has, therefore, seemed an especially excusable act. Some would argue that doctors, and only doctors, should be granted the right to manipulate the truth in ways so undesirable for politicians, lawyers, and others.1 Doctors are trained to help patients; their relationship to patients carries special obligations, and they know much more than laymen about what helps and hinders recovery and survival.
Even the most conscientious doctors, then, who hold themselves at a distance from the quacks and the purveyors of false remedies, hesitate to for- swear all lying. Lying is usually wrong, they argue, but less so than allowing the truth to harm patients. B. C. Meyer echoes this very common view:
[O]urs is a profession which traditionally has been guided by a precept that transcends the virtue of uttering truth for truth's sake, and that is, "so far as possible, do no harm."2
Truth, for Meyer, may be important, but not when it endangers the health and well-being of patients. This has seemed self-evident to many physicians in the past-so much so that we find very few mentions of veracity in the codes and oaths and writings by physicians through the centuries. This absence is all the more striking as other principles of ethics have been consistently and movingly expressed in the same documents.
The two fundamental principles of doing good and not doing harm -- of beneficence and nonmaleficence -- are the most immediately relevant to medical practitioners, and the more frequently stressed. To preserve life and good health, to ward off illness, pain, and death-these are the perennial tasks of medicine and nursing. These principles have found powerful expression at all times in the history of medicine. In the Hippocratic oath physicians promise to:
use treatment to help the sick…. but never with a view to injury and wrong-doing.3
And a Hindu oath of initiation says:
Day and night, however thou mayest be engaged, thou shalt endeavor for the relief of patients with all thy heart and soul. Thou shalt not desert or injure the patient even for the sake of thy living.4
But there is no similar stress on veracity. It is absent from virtually all oaths, codes, and prayers. The Hippocratic Oath makes no mention of truthfulness to patients about their condition, prognosis, or treatment. Other early codes and prayers are equally silent on the subject. To be sure, they often refer to the confidentiality with which doctors should treat all that patients tell them; but there is no corresponding reference to honesty toward the patient. One of the few who appealed to such a principle was Amatus Lusitanus, a Jewish physician widely known for his skill, who, persecuted, died of the plague in 1568. He published an oath which reads in part:
If I lie, may I incur the eternal wrath of God and of His angel Raphael, and may nothing in the medical art succeed for me according to my desires.5
Later codes continue to avoid the subject. Not even the Declaration of Geneva, adopted in 1948 by the World Medical Association, makes any reference to it. And the Principles of Medical Ethics of the American Medical Association 6 still leave the matter of informing patients up to the physician.
Given such freedom, a physician can decide to tell as much or as little as he wants the patient to know, so long as he breaks no law. In the case of the man mentioned at the beginning. ..some physicians might feel justified in lying for the good of the patient, others might be truthful. Some may conceal alternatives to the treatment they recommend; others not. In each case, they could appeal to the AMA Principles of Ethics. A great many would choose to be able to lie. They would claim that not only can a lie avoid harm for the patient, but that it is also hard to know whether they have been right in the first place in making their pessimistic diagnosis; a "truthful" statement could therefore turn out to hurt patients unnecessarily. The concern for curing and for supporting those who cannot be cured then runs counter to the desire to be completely open. This concern is especially strong where the prognosis is bleak; even more so when patients are so affected by their illness or their medication that they are more dependent than usual, perhaps more easily depressed or irrational.
Physicians know only too well how uncertain a diagnosis or prognosis can be. They know how hard it is to give meaningful and correct answers regarding health and illness. They also know that disclosing their own uncertainty or fears can reduce those benefits that depend upon faith in recovery. They fear, too, that revealing grave risks, no matter how unlikely it is that these will come about, may exercise the pull of the "self-fulfilling prophecy."
They dislike being the bearers of uncertain or bad news as much as anyone else. And last, but not least, sitting down to discuss an illness truthfully and sensitively may take much-needed time away from other patients.
These reasons help explain why nurses and physicians and relatives of the sick and dying prefer not to be bound by rules that might limit their ability to suppress, delay, or distort information. This is not to say that they necessarily plan to lie much of the time. They merely want to have the freedom to do so when they believe it wise. And the reluctance to see lying prohibited explains, in turn, the failure of the codes and oaths to come to grips with the problems of truth telling and lying.
But sharp conflicts are now arising. Doctors no longer work alone with patients. They have to consult with others much more than before; if they choose to lie, the choice may not be met with approval by all who take part in the care of the patient. A nurse expresses the difficulty which results as follows:
From personal experience I would say that the patients who aren't told about their terminal illness have so many verbal and mental questions unanswered that many will begin to realize that their illness is more serious than they're being told. ...
Nurses care for these patients twenty-four hours a day compared to a doctor's daily brief visit, and it is the nurse many times that the patient will relate to, once his underlying fears become overwhelming. ...This is difficult for us nurses because being in constant contact with patients we can see the events leading up to this. The patient continually asks you, "Why isn't my pain decreasing?" or "Why isn't the radiation treatment easing the pain?" ...We cannot legally give these patients an honest answer as a nurse (and I'm sure I wouldn't want to) yet the problem is still not resolved and the circle grows larger and larger with the patient alone in the middle.7
The doctor's choice to lie increasingly involves co-workers in acting a part they find neither humane nor wise. The fact that these problems have not been carefully thought through within the medical profession, nor seriously addressed in medical education, merely serves to intensify the conflicts.8 Different doctors then respond very differently to patients in exactly similar predicaments. The friction is increased by the fact that relatives often disagree even where those giving medical care to a patient are in accord on how to approach the patient. Here again, because physicians have not worked out to common satisfaction the question of whether relatives have the right to make such requests, the problems are allowed to be haphazardly resolved by each physician as he sees fit.
THE PATIENT'S PERSPECTIVE
The turmoil in the medical profession regarding truth telling is further augmented by the pressures that patients themselves now bring to bear and by empirical data coming to light. Challenges are growing to three major arguments for lying to patients: that truthfulness is impossible; that patients do not want bad news; and that truthful information harms them. ...
The second argument for deceiving patients refers specifically to giving them news of a frightening or depressing kind. It holds that patients do not, in fact, generally want such information, that they prefer not to have to face up to serious illness and death. On the basis of such a belief, most doctors in a number of surveys stated that they do not, as a rule, inform patients that they have an illness such as cancer.
When studies are made of what patients desire to know, on the other hand, a large majority say that they would like to be told of such a diagnosis.9 All these studies need updating and should be done with large numbers of patients and non-patients. But they do show that there is generally a dramatic divergence between physicians and patients on the factual question of whether patients want to know what ails them in cases of serious illness such as cancer. In most of the studies, over 80 percent of the persons asked indicated that they would want to be told.
Sometimes this discrepancy is set aside by doctors who want to retain the view that patients do not want unhappy news. In reality, they claim, the fact that patients say they want it has to be discounted. The more someone asks to know, the more he suffers from fear which will lead to the denial of the information even if it is given. Informing patients is, therefore, useless; they resist and deny having been told what they cannot assimilate. According to this view, empirical studies of what patients say they want are worthless since they do not probe deeply enough to uncover this universal resistance to the contemplation of one's own death.
This view is only partially correct. For some patients, denial is indeed well established in medical experience. A number of patients (estimated at between 15 percent and 25 percent) will give evidence of denial of having been told about their illness, even when they repeatedly ask and are repeatedly informed. And nearly everyone experiences a period of denial at some point in the course of approaching death.10 Elisabeth Kubler-Ross sees denial as resulting often from premature and abrupt information by a stranger who goes through the process quickly to "get it over with." She holds that denial functions as a buffer after unexpected shocking news, permitting individuals to collect themselves and to mobilize other defenses. She described prolonged denial in one patient as follows:
She was convinced that the X-rays were "mixed up"; she asked for reassurance that her pathology report could not possibly be back so soon and that another patient's report must have been marked with her name. When none of this could be confirmed, she quickly asked to leave the hospital, looking for another physician in the vain hope "to get a better explanation for my troubles." This patient went "shopping around" for many doctors, some of whom gave her reassuring answers, others of whom confirmed the previous suspicion. Whether confirmed or not, she reacted in the same manner; she asked for examination and reexamination.11
But to say that denial is universal flies in the face of all evidence. And to take any claim to the contrary as "symptomatic" of deeper denial leaves no room for reasoned discourse. There is no way that such universal denial can be proved true or false. To believe in it is a metaphysical belief about man's condition, not a statement about what patients do and do not want. It is true that we can never completely understand the possibility of our own death, any more than being alive in the first place. But people certainly differ in the degree to which they can approach such knowledge, take it into account in their plans, and make their peace with it.
Montaigne claimed that in order to learn both to live and to die, men have to think about death and be prepared to accept it.12 To stick one's head in the sand, or to be prevented by lies from trying to discern what is to come, hampers freedom - freedom to consider one's life as a whole, with a beginning, a duration, an end. Some may request to be deceived rather than to see their lives as thus finite; others reject the information which would require them to do so; but most say that they want to know. Their concern for knowing about their condition goes far beyond mere curiosity or the wish to make isolated personal choices in the short time left to them; their stance toward the entire life they have lived, and their ability to give it meaning and completion, are at stake.13 In lying or with- holding the facts which permit such discernment, doctors may reflect their own fears (which, according to one study,14 are much stronger than those of laymen) of facing questions about the meaning of one's life and the inevitability of death.
Beyond the fundamental deprivation that can result from deception, we are also becoming increasingly aware of all that can befall patients in the course of their illness when information is denied or distorted. Lies place them in a position where they no longer participate in choices concerning their own health, including the choice of whether to be a "patient" in the first place. A terminally ill person who is not informed that his illness is incurable and that he is near death cannot make decisions about the end of his life: about whether or not to enter a hospital, or to have surgery; where and with whom to spend his last days; how to put his affairs in order-these most personal choices cannot be made if he is kept in the dark, or given contradictory hints and clues.
It has always been especially easy to keep knowledge from terminally ill patients. They are most vulnerable, least able to take action to learn what they need to know, or to protect their autonomy. The very fact of being so ill greatly increases the likelihood of control by others. And the fear of being helpless in the face of such control is growing. At the same time, the period of dependency and slow deterioration of health and strength that people undergo has lengthened. There has been a dramatic shift toward institutionalization of the aged and those near death. (Over 80 percent of Americans now die in a hospital or other institution.)
Patients who are severely ill often suffer a further distancing and loss of control over their most basic functions. Electrical wiring, machines, intravenous administration of liquids, all create new dependency and at the same time new distance between the patient and all who come near .Curable patients are often willing to undergo such procedures; but when no cure is possible, these procedures merely intensify the sense of distance and uncertainty and can even become a substitute for comforting human acts. Yet those who suffer in this way often fear to seem troublesome by complaining. Lying to them, perhaps for the most charitable of purposes, can then cause them to slip unwittingly into subjection to new procedures, perhaps new surgery , where death is held at bay through transfusions, respirators, even resuscitation far beyond what most would wish.
Seeing relatives in such predicaments has caused a great upsurge of worrying about death and dying. At the root of this fear is not a growing terror of the moment of death, or even the instants before it. Nor is there greater fear of being dead. In contrast to the centuries of lives lived in dread of the punishments to be inflicted after death, many would now accept the view expressed by Epicurus, who died in 270 H.C.:
Death, therefore, the most awful of evils, is nothing to us, seeing that, when we are, death is not come, and, when death is come, we are not. 15
The growing fear, if it is not of the moment of dying nor of being dead, is of all that which now precedes dying for so many: the possibility of prolonged pain, the increasing weakness, the uncertainty, the loss of powers and chance of senility, the sense of being a burden. This fear is further nourished by the loss of trust in health professionals. In part, the loss of trust results from the abuses which have been exposed-the Medicaid scandals, the old-age home profiteering, the commercial exploitation of those who seek remedies for their ailments; 16 in part also because of the deceptive practices patients suspect, having seen how friends and relatives were kept in the dark; in part, finally, because of the sheer numbers of persons, often strangers, participating in the care of anyone patient. Trust which might have gone to a doctor long known to the patient goes less easily to a team of strangers, no matter how expert or well-meaning.
It is with the working out of all that informed consent17 implies and the information it presupposes that truth telling is coming to be discussed in a serious way for the first time in the health professions. Informed consent is a farce if the information provided is distorted or withheld. And even complete information regarding surgical procedures or medication is obviously useless unless the patient also knows what the condition is that these are supposed to correct.
Bills of rights for patients, similarly stressing the right to be informed, are now gaining acceptance.18 This right is not new, but the effort to implement it is. Nevertheless, even where patients are handed the most elegantly phrased Bill of Rights, their right to a truthful diagnosis and prognosis is by no means always respected.
The reason why even doctors who recognize a patient's right to have information might still not provide it brings us to the third argument against telling all patients the truth. It holds that the information given might hurt the patient and that the concern for the right to such information is therefore a threat to proper health care. A patient, these doctors argue, may wish to commit suicide after being given discouraging news, or suffer a cardiac arrest, or simply cease to struggle, and thus not grasp the small remaining chance for recovery. And even where the outlook for a patient is very good, the disclosure of a minute risk can shock some patients or cause them to reject needed protection such as a vaccination or antibiotics.
The factual basis for this argument has been challenged from two points of view. The damages associated with the disclosure of sad news or risks are rarer than physicians believe; and the benefits which result from being informed are more substantial, even measurably so. Pain is tolerated more easily, recovery from surgery is quicker, and co- operation with therapy is greatly improved. The attitude that "what you don't know won't hurt you" is proving unrealistic; it is what patients do not know but vaguely suspect that causes them corrosive worry. It is certain that no answers to this question of harm from information are the same for all patients. If we look, first, at the fear expressed by physicians that informing patients of even remote or unlikely risks connected with a drug prescription or operation might shock some and make others refuse the treatment that would have been best for them, it appears to be unfounded for the great majority of patients. Studies show that very few patients respond to being told of such risks by withdrawing their consent to the procedure and that those who do withdraw are the very ones who might well have been upset enough to sue the physician had they not been asked to consent beforehand.19 It is possible that on even rarer occasions especially susceptible persons might manifest physical deterioration from shock; some physicians have even asked whether patients who die after giving informed consent to an operation, but before it actually takes place, somehow expire because of the information given to them,2° While such questions are unanswerable in anyone case, they certainly argue in favor of caution, a real concern for the person to whom one is recounting the risks he or she will face, and sensitivity to all signs of stress.
The situation is quite different when persons who are already ill, perhaps already quite weak and discouraged, are told of a very serious prognosis. Physicians fear that such knowledge may cause the patients to commit suicide, or to be frightened or depressed to the point that their illness takes a downward turn. The fear that great numbers of patients will commit suicide appears to be unfounded.21 And if some do, is that a response so unreasonable, so much against the patient's best interest that physicians ought to make it a reason for concealment or lies? Many societies have al- lowed suicide in the past; our own has decriminalized it; and some are coming to make distinctions among the many suicides which ought to be prevented if at all possible, and those which ought to be respected.22
Another possible response to very bleak news is the triggering of physiological mechanisms which allow death to come more quickly-a form of giving up or of preparing for the inevitable, de- pending on one's outlook. Lewis Thomas, studying responses in humans and animals, holds it not unlikely that:
There is a pivotal movement at some stage in the body's reaction to injury or disease, maybe in aging as well, when the organism concedes that it is finished and the time for dying is at hand, and at this moment the events that lead to death are launched, as a coordinated mechanism. Functions are then shut off, in sequence, irreversibly, and, while this is going on, a neural mechanism, held ready for this occasion, is switched on.23
Such a response may be appropriate, in which case it makes the moments of dying as peaceful as those who have died and been resuscitated so often testify. But it may also be brought on inappropriately, when the organism could have lived on, perhaps even induced malevolently, by external acts intended to kill. Thomas speculates that some of the deaths resulting from "hexing" are due to such responses. Levi-Strauss describes deaths from exorcism and the casting of spells in ways which suggest that the same process may then be brought on by the community.24
It is not inconceivable that unhappy news abruptly conveyed, or a great shock given to someone unable to tolerate it, could also bring on such a "dying response," quite unintended by the speaker. There is every reason to be cautious and to try to know ahead of time how susceptible a patient might be to the accidental triggering-however rare--of such a response. One has to assume, however, that most of those who have survived long enough to be in a situation where their informed consent is asked have a very robust resistance to such accidental triggering of processes leading to death. When, on the other hand, one considers those who are already near death, the "dying response" may be much less inappropriate, much less accidental, much less unreasonable. In most societies, long before the advent of modem medicine, human beings have made themselves ready for death once they felt its approach. Philippe Aries describes how many in the Middle Ages prepared themselves for death when they "felt the end approach." They awaited death lying down, surrounded by friends and relatives. They recollected all they had lived through and done, pardoning all who stood near their deathbed, calling on God to bless them, and finally praying. "After the final prayer all that remained was to wait for death, and there was no reason for death to tarry."25
Modem medicine, in its valiant efforts to defeat disease and to save lives, may be dislocating the conscious as well as the purely organic responses allowing death to come when it is inevitable, thus denying those who are dying the benefits of the traditional approach to death. In lying to them, and in pressing medical efforts to cure them long past the point of possible recovery, physicians may thus rob individuals of an autonomy few would choose to give up.
Sometimes, then, the "dying response" is a natural organic reaction at the time when the body has no further defense. Sometimes it is inappropriately brought on by news too shocking or given in too abrupt a manner. We need to learn a great deal more about this last category, no matter how small. But there is no evidence that patients in general will be debilitated by truthful information about their condition.
Apart from possible harm from information, we are coming to learn much more about the benefits it can bring patients. People follow instructions more carefully if they know what their disease is and why they are asked to take medication; any benefits from those procedures are therefore much more likely to come about.26 Similarly, people recover faster from surgery and tolerate pain with less medication if they understand what ails them and what can be done for them.27
