Missouri Medicine, Vol. 70, No. 1, January 1973, p. 37

The subject of death holds a certain fascination which mixes curiosity with revulsion, sometimes fear with hesitant expectation and, although a reality, it is not always present in everyone’s mind. Traditionally, this subject has been one of the major concerns of religion and its institutional representatives, whereas the preservation of life has been the prime responsibility of the physician. Indeed, death almost symbolized the failure of the physician’s efforts. Schopenhauer’s remark that the fear of death was the beginning of philosophy and the cause of religion probably overstated the issue. There are other mysteries in our existence which have led man to seek answers and solace in superior or supreme beings in an attempt to come to terms with problems of his existence. Man presumably is the only animal aware of his mortality. Yet, we do not dwell on this even in moments of great distress or catastrophe. We are likely to consider a person to be sick if he continually ruminates about death and entertains thoughts of dying. But, there are moments in life when the thought of death enters the awareness of the average person and fear arises within him.

Montaigne(1) said, “The end of our race is death; ’tis the necessary object of our aim which if it frights us, how is it possible to advance a step without a fit of ague? The remedy the vulgar use is not to think on’t; but from what brutish stupidity can they derive so gross a blindness? . . . Let us disarm death of his novelty and strangeness, let us converse and be famil-iar with him and have nothing so frequent in our thoughts as death.” On the other hand, Spinoza holds in his Ethics, “A free man thinks of death least of all things; and wisdom is a meditation not of death, but of life.” Between these two poles, we can find almost any type of opinion, and nothing seems easier than to obtain quotes concerning death from the great intellects supporting one or the other attitude or, perhaps, even several at the same time. Age, stress and emotional upheaval alter ideas relating to death. We may question the statement concerning man’s unique position in the animal kingdom in connection with his awareness of mortality, because nobody has ever interviewed an animal. In observing animal behavior under mortal stress, however, there is little doubt about their reactions, their fears, their attempts to escape possible destruction. After all, this is just about what man does, other than to philosophize about the impermanence of life and to attempt to ward off the inevitable.

Until not too many years ago, the subject of death and, certainly, the physician’s responsibility in preparing a patient for this inevitable event was almost proscribed in medical literature. Only a few courageous teachers in medical schools dared approach the subject in lectures or conferences with medical students, and they usually limited their discussions to the simple question, “To tell or not to tell?” Even then, opinions were sharply divided and only the rare individual would go on to the question of “How to tell?”

Pertinent books and articles began to appear approximately 12 years ago and led to an avalanche of publications in the last three or four years culminating in a feature story in a popular weekly magazine, which nowadays denotes a stamp of social approval. I am not sure how this development came about except, perhaps, as a reaction to exaggerated expectations from medical progress which tended to make death less of a reality than it had been in times past. The Middle Ages, especially in 14th and 15th Century Europe, were intensely preoccupied with death as an ever-present companion, and the Apocalyptic Horsemen swept through art, literature and in their realistic form through the daily life of the populace. In stark contrast, our era has come to expect life as a right, and we have relegated death very neatly into some corner under the care of specially self-appointed minions whose major goal is to make death even look like life. We have done our very best to deny the existence of death and protect the living not only from any awareness of its in-

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evitability, but. also, of its genuine appearance. By substituting instrumental values for institutional sanctions we have mechanized it.

The fatally ill are removed from their loved ones and their familiar environment and are forced to end their lives in the perhaps competent but exceedingly sterile and unemotional environment of a hospital. The ostensible reason, of course, is that hospitals are equipped for the support and prolongation of life while the av-erage home is not. In our pragmatic way of thinking, such reasoning is applied without distinction or discrimination, that is, regardless of whether the patient suffers from an illness that calls for vigorous life-restoring treatment or whether treatment simply implies a few hours or a few more days of agony. Moreover, to make matters worse, the individual affected is rarely consulted concerning his or her own wishes. In short, it is simply taken for granted that everybody wants to live a little longer. American civilization takes pride in the belief that nothing is unattainable, not even the conquest of death. Strangely enough, it is far less preoccupied with the attainment of sensible, meaningful life.

Socially conscious members of the medical profession, as well as associated disciplines, be-gan to worry about this attitude which takes biological life for granted and considers death almost as a misadventure because it placed a heavy burden on the shoulders of the responsible caretakers. As in other areas of social concern, psychiatrists became deeply involved and were expected to provide some answers although the psychiatrist encounters death far less frequently in his daily clinical activities than other physicians. Another development which brought the problem of life and death into sharper focus was the introduction of new, highly sophisticated and very expensive treatment methods which confronted the physician with the awesome dilemma of who should live and who should die. This includes the entire area of organ transplants, artificial organs, certain perfusion techniques and treatment with drugs of considerable toxicity. Finally, to complicate matters further. death itself was questioned and became a serious medical and legal as well as theological problem.

A first step toward alleviating the problem was to examine and define attitudes towards death. One may question whether they are not simply of academic concern and, perhaps, of interest to the philosopher, the historian or the theologian? Some publications seem to convey the impression that if one follows a certain prescribed course in the management of the dying patient, one is bound to relieve suffering and provide solace. This is a rather simplistic approach which fails to account for individual differences and leads to the danger of ignoring certain mores, rituals, cultural sanctions and a variety of other factors. Unless we know and respect social and cultural forces and the attitudes which they generate in the individual, we are poorly prepared to deal with the person’s hopes, fears and expectations.

In general, attitudes towards death have undergone changes in recent times. However, it is not clear if this phenomenon is the result of cultural transformations or if culture reflects changes in experience of the unconscious mind. Anxiety continues to be present in everyone and is usually managed in a protective system which functions well until existence itself is threatened. Such protective systems change with time and find sanction or disapproval in the social ambient. Although the nature and meaning of anxiety have been investigated by practically all schools of psychology and philosophy with diverse results, I feel that the existentialist approach may be pertinent for the encounter with death. Tillich (2) defines the concept as follows: “The first assertion about the nature of anxiety is this: Anxiety is the state in which a being is aware of its possible nonbeing. It is not the abstract knowledge of nonbeing which produces anxiety, but the awareness that nonbeing is part of one’s own being. It is not the realization of universal transitoriness, not even the experience of the death of others, but the impression of these events and the always latent awareness of our own having to die that produces anxiety'.”

As a general definition of anxiety, this formulation is undoubtedly insufficient and opens many questions. However, in the context of a specific discussion of death and the fear of dying, it seems to have more meaning than, for instance, Freud’s concept of a death instinct. Regardless of the nature of the phenomenon of anxiety, we have to accept the fact that the thought of death generates fears, the nature of which varies from century to century, from society to society, from family to family, from one individual to the next. If death is no longer the ever-present reality that we described for the Middle Ages, we are still faced with constant reminders on different levels of awareness and sensitivity. It may be an impersonal experience, such as the death of some public figure, a natural or technological disaster, war time casual-

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ties or similar catastrophic events. It may be on an interpersonal level, such as a death of friends or close or remote acquaintances. Finally, it can be on the highly personal level, such as in the death of a member of one’s family, which is most likely to generate strong feelings within us. The reaction to the latter experience will be largely conditioned by the character of the relationship and will increase in intensity if this relationship was not clearly defined and, perhaps, consisted of a mixture of love and hate. Such conflict-ridden situations provoke coping maneuvers to help conquer intolerable physiological and psychological distress. The defense mechanisms at our disposal are largely designed to deal with the emotional impact of personal experiences and memories, but we have no personal memory for death.

Death, in psychoanalytic terms, has no archaic infantile representation. Therefore, we conceive of it mostly in terms of separation, i.e., the impression created by the death of others. The French have a saying, “To leave is to die a little,” which equates separation with dying. In a childlike manner, we feel that it is not we who die and leave everybody else behind, but we rather conceptualize that the others, the entire world, friends and families desert and reject us. Hence, we experience the terrors of loneliness and isolation. Life would be intolerable with such constant awareness and, therefore, we have surrounded ourselves as individuals and society with all sorts of magical stratagems. We strive to deny death by not talking about it, because this may precipitate it. We are reluctant to prepare for it, purchase “life” insurance and not “death” insurance and avoid making out wills.

On a national level, we depersonalize death with the aid of the news media. One possible exception is survivors of sudden-death situations who allegedly describe no fear at the ultimate moment but, rather, pleasurable sensations, memories etc. This may be an attempt by the Ego at mastery of the current situation. Survivors of lingering catastrophic events, on the other hand, describe initial fear which is later replaced by a feeling of invulnerability. However, relatively few persons have had such experiences and the vast majority have to fashion its own concept.

[Sidebar]

“How to tell?” This author reviews philosophical viewpoints about dying with some examples of practical applications in clinical medicine. While he states that there is no universal formula for communication with the fatally ill, he suggests that observation of behavior and interaction with significant family members can help in selecting the most appropriate method. He attempts to bring into focus the nature of the fear of death and offers four basic rules for communication. Doctor Silberman was Associate Professor of Psychiatry at the University of Missouri School of Medicine at the time this paper was written. He is now Director of the Psychiatric Outpatient Clinic at Virginia Commonwealth University.

In general, mankind has tried to reduce fear of death in two ways: (1) Through emphasis on the importance of earthly life or ( 2 ) through emphasis on an afterlife. The latter attitude usually implies that certain desirable, conforming behavior in one’s lifetime insures considerable rewards in the hereafter. A variation on this particular theme, of course, is the doc-trine of transmigration of souls, which placed reward and punishment for one’s behavior not into some ill-defined location but right here on earth, and which not only determines one’s future but explains even present fate on the basis of one’s behavior in a past life. The question has been posed whether religious dogma actually affects the fear of death and whether there is a difference in attitudes between a believer and a nonbeliever. Perhaps, it is not true that one is less afraid because one is a believer, but rather that one is a believer because of one’s fears. Today’s social climate presents serious problems for true believers unless they happen to live in an appropriate cultural environment. Otherwise, they may encounter skepticism and, perhaps, analysis of their motives.

As already mentioned, our civilization has placed many taboos on references to death by surrounding it with euphemisms, magical attitudes, counterphobic devices and similar stratagems. Some say that we are not so much afraid of death as of dying, meaning suffering, disfigurement, loss of identity and helplessness. People may express preference for a sudden death, but also reserve judgment by adding that it is harder on the survivors. Regardless of opinions expressed in times of health, attitudes undergo remarkable changes when the individual is faced with the fact of a fatal illness. Of course, much depends on the person’s customary way of dealing with stresses. But even the most poised and presumably well-adjusted individual

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will fall back on less rational and less mature adjustment mechanisms. Moreover, these will shift in the course of the illness, and circumspection is certainly indicated.

There is no universal recipe for communication with the fatally ill. In addition to the afflicted person, we must consider the family members as well as the personality of the physician. There is frequently a sort of family culture which governs family relations in times of stress and which may lend support to the suffering member. It also may become highly destructive. unless it is recognized as such and speedily dealt with. By this, I do not mean that we should impose our own concepts which may be quite alien and only help to confuse the issue. By closely observing behavior and interaction of significant family members, one can then select the most appropriate method for communication. Most importantly, one must watch one’s language. There are terms charged with emotional meanings, such as the word “cancer” or its synonyms, which are the equivalent of a death sentence in the mind of many lay persons. The term “stroke” may be equally risky. Far more serious illnesses may be accepted with equanimity because they lack the emotional impact which socially stigmatized terms confer.

In terms of overt behavior of the patient, some observers distinguished so-called negative and positive attitudes. Among the former are listed indifference, fear, protest, contempt, envy of the living, despair, shame and stigma. Positive attitudes include courage, stoicism, heroism, surge of creativity and, occasionally, even glorification of death. Such value judgment is largely in the eye of the beholder and does not really reflect the individual’s true feelings. Attitudes also do not exist in isolation, but are intertwined and undergo frequent changes related to the course of the illness, incidental experiences and environmental influences.

The feelings of the caretakers play an important part in this system of communication. Not every physician has the capacity for effective communication with the fatally ill patient. Students and young physicians have an especially tough time. They like to think of themselves as healers and often cannot tolerate the thought that all their efforts have been or will be in vain. The hospital setting itself provides little support and, indeed, may directly or indirectly impart negative messages. Transfer of a patient to a special room, fewer visits by physicians on their rounds, more hurried ministrations by nurses, whispered communications and other changes in behavior become ominous signs to the sick person. But they also set a pattern for the medical student who accepts them as routines and who, if he does question them, may receive a rationalized answer. Unless students and house staff are given an opportunity to discuss these problems, to learn to accept the more unpleasant aspects of their calling and to make constructive use of their early sensitivity, they will suffer serious conflicts later on.

A second-year medical student reported to me on the interview and examination of an elderly lady suffering from leukemia. A very thorough medical history and a good physical examination had been accomplished, but at no time had the meaning of the illness been talked over with the patient. When I suggested that this approach might be indicated, the student became irritated blurting out, “Why must you stir up trouble? She seemed perfectly happy the way she was.” The student had completely ignored the fact that, in spite of the alleged contentment, the lady had consulted numerous doctors between her home in Florida and Missouri, where she was visiting her daughter. One of her complaints was that “nobody tells me anything” and that she had to make important decisions in the near future. The student also ignored the choices of communication available to her and could only think in terms of some definitive message, such as that the patient had cancer and that her life span was extremely limited. She also minimized the patient’s knowledge of her condition.

Most patients know that they have a fatal illness, but they may hesitate to talk about it out of consideration for the family. Thus, one often witnesses the tragic spectacle of an entire family suffering because the members wish to “spare” each other’s feelings. Our task is not to help patients die, but rather help them live the allotted time remaining. But let us not specify that time because nothing shatters self-esteem or destroys confidence like seeing a patient whom we had told a couple of years earlier that he had only a few more months to live.

The statement, “Nobody tells me anything,” is equally fraught with pitfalls. Man, in general, has considerable capacity for selective inattention especially when bad news is involved. We so often feel frustrated to hear a patient ask questions which we believe we have explained time and time again. Yet, all he wishes is to share his feelings and his experiences with

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another human being or he secretly hopes for more favorable news from another source by cunningly concealing previous information.

Communications do not necessarily focus on the illness and, in fact, rarely do. More often than not, the patient wishes to assure himself of the integrity of his personality, of his self- respect and, in a way, insure some measure of his immortality. The discussion of past or present achievements may well fulfill this purpose. Our principal ways of achieving immortality is by implanting memories of ourselves in the minds of others. An occasional patient will make small presents to his physician or others in the environment to be remembered, and they should be accepted and cherished. We may want to ask ourselves when the patient should be told or, perhaps better, when the dialogue with the patient should be initiated. The patient will have developed misgivings, worries and doubts about his own condition long before a definitive diagnosis is established. There should be meaningful ongoing communication between physician, patient and family at all times, regardless of the phase of illness. Indeed, such continuous contact is essential to insure future understanding, confidence and mutual respect. Once the diagnosis is established, it may become necessary to propose rather painful or risky treatment methods to which the patient may not readily agree unless he has faith in his doctor’s judgment and possesses some insight into the seriousness of his condition. At times, it is more difficult to obtain the patient’s consent and cooperation for complex and, perhaps, even painful treatment methods than it is to help him grasp the fatal character of the illness.

Some authors try to distinguish diverse stages of psychological awareness. I shall limit myself to quoting two psychiatrists whose basic theoretical frameworks differ materially. The first, a research analyst (3), distinguishes three stages : the initial stage of reduced alternative, and intermediate stage of middle knowledge and the terminal stage of counter control and cessation. During the first stage, the patient may feel quite well, which somehow complicates communication and decision-making although the patient may be quite willing to go along with certain modes of treatment. Indeed, it may be largely the family that resists during that period. The psychological atmosphere of this stage also is occasionally referred to as “Closed Awareness.’’ It may have a quality of secrecy with the secret hopefully being shared by patient and physician. Presumably during this stage, the patient must learn to limit his plans for the future and reduce alternatives, to quote the author. I do not necessarily agree with the last concept because of the potentially paralyzing effect on the patient’s daily activities.

The second stage of “Middle Knowledge” is essentially characterized by a surge of rapidly alternating and, at times, even opposite defense mechanisms. During this stage, the patient usually deals with certainty as uncertainty. He may consider himself to have recovered from an illness and be ready for new ventures. He may attribute discomforts to treatment rather than to the underlying condition and eventually challenge the physician’s judgment. He will frequently enlist the help of family or friends to seek new remedies and grasp avidly at even irrational promises of cures.

The final stage, named “Counter Control and Cessation,” consists essentially in “giving up. Unless the intermediate stage has been grossly mismanaged by family or caretakers, much can be done in the professional setting in the last phase to ease the patient’s suffering because there is no need for deception or pretense and all efforts can concentrate on the adaptation for the end.

The psychological stages proposed by the other more clinically-oriented psychiatrist (4) number five and differ somewhat in sequence from the earlier described ones. Stage one consists of shock or denial. The patient wall feel that somebody has made a mistake, that specimens were mixed up, that “it simply can’t be so." He may withdraw or shop around for doctors, anticipating a more favorable judgment. Stage number two consists of anger and rage with bitterness, resentment and, at times, aggressivity. Stage three is the bargaining stage, to wit, “I'll be a good boy or girl— just give me a little more time.” This stage is occasionally related to real events. The patients may like to attend the graduation of a child, a wedding, the birth of a grandchild or some similar event representing the previously-mentioned quest for immortality through remembrance. Stage four usually includes depression and preparatory grief. During this stage, the patient may prepare for the inevitable, take care of mundane affairs and simply get ready. Stage five is acceptance. At its very best, it is not simply passive resignation, but a more positive expression of being ready and in peace with their fate. At this point, the patient

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does not like much commotion, he prefers to have just one favorite visitor at a time and he no longer exhibits concern over his condition.

As in most human affairs, division into stages is a somewhat arbitrary method, especially when taken literally. There is no clear-cut progression from one stage to the next in the course of a fatal illness anymore than there is in early growth and development. Of course, certain attitudes may predominate, but it is equally true that the patient may fall back on earlier modes of adjustment. Eternal watchfulness is required of the physician and nursing personnel who simply must not be satisfied that they have “told the truth,” nor should they acquiesce if the patient asks no further question. Communication is not static but an ongoing process, and we must always follow through. The ability to test reality becomes quite brittle when life is at stake. But communication is not limited to language. Attitude may be far more important. At times, we must be prepared to forego medical dignity or pride and engage in activities not customarily associated with the physician’s work, but, perhaps, more meaningful to the patient in the later stages of his illness. A few spoonfuls of a favorite dish, a sip of a relished beverage or sharing family snapshots may be far more beneficial than the infusion of a scientifically concocted fluid containing electrolytes, vitamins or antibiotics presumably necessary for survival.

Survival indeed! Sympathy, compassion and understanding set the stage for the eternal survival that the patient craves during the last stages of life.

In this brief presentation, I have been able to hit only the highlights of communication with the fatally ill. I have attempted to bring into focus the nature of the fear of death, the social and cultural attitudes of man in general and, finally, I have concentrated on some of the outstanding conflicts and concerns experienced by the terminal patient and his environment.

In concluding, let me just add four basic rules which were proposed by a perceptive psychiatrist in one of the earlier books on the subject. I consider them to be simple and very meaningful: (5)

1. Do not tell the patient anything that might induce psychopathology.

2. Hope must never die too far ahead of the patient.

3. The gravity of the situation should never be minimized.

4. As much as possible, don’t let the patient sit around idly awaiting death.

References

1. Montaigne. Michel de: Essays of Montaigne (Vol. I, Chap. 19). Ed. by William Harzlitt. London. Reeves and Turner, 1877.

2. Tillich, Paul: The Courage to Be. New Haven, Yale University Press, 1952.

3. Weisman, Avers' D.. M.D. and Hackett. Thomas P., M.D.: Predilection to Death. Psychosomat. Med. 23:232-256. 1961.

4. Kubler-Ross, Elizabeth. M.D.: On Death and Dying. The Macmillan Company, 1969.

5. Aronson. G. T. : Treatment of the Dying Person in The Meaning of Death. Ed. by Herman Feifel. New York, McGraw-Hill Co., 1959.

Reprints: Henry K. Silberman, M.D.

Psychiatric Outpatient Clinic

Virginia Comnwmcealth University

Box 253, M.C.V. Station

Richmond, Va. 23219