A Life in Medicine

by Robert Coles

  The intensity of ties to the family cannot be overemphasized; people frequently behave as though they were physical extensions of their parents. Events that might cause suffering in others may be borne without complaint by someone who believes that the disease is part of his or her family identity and hence inevitable. Even diseases for which no heritable basis is known may be borne easily by a person because others in the family have been similarly afflicted. Just as the person’s past experiences give meaning to present events, so do the past experiences of his or her family. Those meanings are part of the person.

  A person has a cultural background. Just as a person is part of a culture and a society, these elements are part of the person. Culture defines what is meant by masculinity or femininity, what attire is acceptable, attitudes toward the dying and sick, mating behavior, the height of chairs and steps, degrees of tolerance for odors and excreta, and how the aged and the disabled are treated. Cultural definitions have an enormous impact on the sick and can be a source of untold suffering. They influence the behavior of others toward the sick person and that of the sick toward themselves. Cultural norms and social rules regulate whether someone can be among others or will be isolated, whether the sick will be considered foul or acceptable, and whether they are to be pitied or censured.

  Returning to the sculptor described earlier, we know why that young woman suffered. She was housebound and bedbound, her face was changed by steroids, she was masculinized by her treatment, one breast was scarred, and she had almost no hair. The degree of importance attached to these losses—that aspect of their personal meaning—is determined to a great degree by cultural priorities.

  With this in mind, we can also realize how much someone devoid of physical pain, even devoid of “symptoms,” may suffer. People suffer from what they have lost of themselves in relation to the world of objects, events, and relationships. We realize, too, that although medical care can reduce the impact of sickness, inattentive care can increase the disruption caused by illness.

  A person has roles. I am a husband, a father, a physician, a teacher, a brother, an orphaned son, and an uncle. People are their roles, and each role has rules. Together, the rules that guide the performance of roles make up a complex set of entitlements and limitations of responsibility and privilege. By middle age, the roles may be so firmly set that disease can lead to the virtual destruction of a person by making the performance of his or her roles impossible. Whether the patient is a doctor who cannot doctor or a mother who cannot mother, he or she is diminished by the loss of function.

  No person exists without others; there is no consciousness without a consciousness of others, no speaker without a hearer, and no act, object, or thought that does not somehow encompass others. All behavior is or will be involved with others, even if only in memory or reverie. Take away others, remove sight or hearing, and the person is diminished. Everyone dreads becoming blind or deaf, but these are only the most obvious injuries to human interaction. There are many ways in which human beings can be cut off from others and then suffer the loss.

  It is in relationships with others that the full range of human emotions finds expression. It is this dimension of the person that may be injured when illness disrupts the ability to express emotion. Furthermore, the extent and nature of a sick person’s relationships influence the degree of suffering from a disease. There is a vast difference between going home to an empty apartment and going home to a network of friends and family after hospitalization. Illness may occur in one partner of a long and strongly bound marriage or in a union that is falling apart. Suffering from the loss of sexual function associated with some diseases will depend not only on the importance of sexual performance itself but also on its importance in the sick person’s relationships.

  A person is a political being. A person is in this sense equal to other persons, with rights and obligations and the ability to redress injury by others and the state. Sickness can interfere, producing the feeling of political powerlessness and lack of representation. Persons who are permanently handicapped may suffer from a feeling of exclusion from participation in the political realm.

  Persons do things. They act, create, make, take apart, put together, wind, unwind, cause to be, and cause to vanish. They know themselves, and are known, by these acts. When illness restricts the range of activity of persons, they are not themselves.

  Persons are often unaware of much that happens within them and why. Thus, there are things in the mind that cannot be brought to awareness by ordinary reflection. The structure of the unconscious is pictured quite differently by different scholars, but most students of human behavior accept the assertion that such an interior world exists. People can behave in ways that seem inexplicable and strange even to themselves, and the sense of powerlessness that the person may feel in the presence of such behavior can be a source of great distress.

  Persons have regular behaviors. In health, we take for granted the details of our day-to-day behavior. Persons know themselves to be well as much by whether they behave as usual as by any other set of facts. Patients decide that they are ill because they cannot perform as usual, and they may suffer the loss of their routine. If they cannot do the things that they identify with the fact of their being, they are not whole.

  Every person has a body. The relation with one’s body may vary from identification with it to admiration, loathing, or constant fear. The body may even be perceived as a representation of a parent, so that when something happens to the person’s body it is as though a parent were injured. Disease can so alter the relation that the body is no longer seen as a friend but, rather, as an untrustworthy enemy. This is intensified if the illness comes on without warning, and as illness persists, the person may feel increasingly vulnerable. Just as many people have an expanded sense of self as a result of changes in their bodies from exercise, the potential exists for a contraction of this sense through injury to the body.

  Everyone has a secret life. Sometimes it takes the form of fantasies and dreams of glory; sometimes it has a real existence known to only a few. Within the secret life are fears, desires, love affairs of the past and present, hopes, and fantasies. Disease may destroy not only the public or the private person but the secret person as well. A secret beloved friend may be lost to a sick person because he or she has no legitimate place by the sickbed. When that happens, the patient may have lost the part of life that made tolerable an otherwise embittered existence. Or the loss may be only of a dream, but one that might have come true. Such loss can be a source of great distress and intensely private pain.

  Everyone has a perceived future. Events that one expects to come to pass vary from expectations for one’s children to a belief in one’s creative ability. Intense unhappiness results from a loss of the future—the future of the individual person, of children, and of other loved ones. Hope dwells in this dimension of existence, and great suffering attends the loss of hope.

  Everyone has a transcendent dimension, a life of the spirit. This is most directly expressed in religion and the mystic traditions, but the frequency with which people have intense feelings of bonding with groups, ideals, or anything larger and more enduring than the person is evidence of the universality of the transcendent dimension. The quality of being greater and more lasting than an individual life gives this aspect of the person its timeless dimension. The profession of medicine appears to ignore the human spirit. When I see patients in nursing homes who have become only bodies, I wonder whether it is not their transcendent dimension that they have lost.

  The Nature of Suffering

  Injuries to the integrity of the person may be expressed by sadness, anger, loneliness, depression, grief, unhappiness, melancholy, rage, withdrawal, or yearning. We acknowledge the person’s right to have and express such feelings. But we often forget that the affect is merely the outward expression of the injury, not the injury itself. We know little about the nature of the injuries themselves, and what we know has been lear
ned largely from literature, not medicine.

  If the injury is sufficient, the person suffers. The only way to learn what damage is sufficient to cause suffering, or whether suffering is present, is to ask the sufferer. We all recognize certain injuries that almost invariably cause suffering: the death or distress of loved ones, powerlessness, helplessness, hopelessness, torture, the loss of a life’s work, betrayal, physical agony, isolation, homelessness, memory failure, and fear. Each is both universal and individual. Each touches features common to all of us, yet each contains features that must be defined in terms of a specific person at a specific time. With the relief of suffering in mind, however, we should reflect on how remarkably little is known of these injuries.

  The Amelioration of Suffering

  One might inquire why everyone is not suffering all the time. In a busy life, almost no day passes in which one’s intactness goes unchallenged. Obviously, not every challenge is a threat. Yet I suspect that there is more suffering than is known. Just as people with chronic pain learn to keep it to themselves because others lose interest, so may those with chronic suffering.

  There is another reason why every injury may not cause suffering. Persons are able to enlarge themselves in response to damage, so that instead of being reduced, they may indeed grow. This response to suffering has encouraged the belief that suffering is good for people. To some degree, and in some persons, this may be so. If a leg is injured so that an athlete cannot run again, the athlete may compensate for the loss by learning another sport or mode of expression. So it is with the loss of relationships, loves, roles, physical strength, dreams, and power. The human body may lack the capacity to gain a new part when one is lost, but the person has it.

  The ability to recover from loss without succumbing to suffering is sometimes called resilience, as though nothing but elastic rebound were involved, but it is more as though an inner force were withdrawn from one manifestation of a person and redirected to another. If a child dies and the parent makes a successful recovery, the person is said to have “rebuilt” his or her life. The term suggests that the parts of the person are structured in a new manner, allowing expression in different dimensions. If a previously active person is confined to a wheelchair, intellectual pursuits may occupy more time.

  Recovery from suffering often involves help, as though people who have lost parts of themselves can be sustained by the personhood of others until their own recovers. This is one of the latent functions of physicians: to lend strength. A group, too, may lend strength: Consider the success of groups of the similarly afflicted in easing the burden of illness (e.g., women with mastectomies, people with ostomies, and even the parents or family members of the diseased).

  Meaning and transcendence offer two additional ways by which the suffering associated with destruction of a part of personhood is ameliorated. Assigning a meaning to the injurious condition often reduces or even resolves the suffering associated with it. Most often, a cause for the condition is sought within past behaviors or beliefs. Thus, the pain or threat that causes suffering is seen as not destroying a part of the person, because it is part of the person by virtue of its origin within the self. In our culture, taking the blame for harm that comes to oneself because of the unconscious mind serves the same purpose as the concept of karma in Eastern theologies; suffering is reduced when it can be located within a coherent set of meanings. Physicians are familiar with the question from the sick, “Did I do something that made this happen?” It is more tolerable for a terrible thing to happen because of something that one has done than it is to be at the mercy of chance.

  Transcendence is probably the most powerful way in which one is restored to wholeness after an injury to personhood. When experienced, transcendence locates the person in a far larger landscape. The sufferer is not isolated by pain but is brought closer to a transpersonal source of meaning and to the human community that shares those meanings. Such an experience need not involve religion in any formal sense; however, in its transpersonal dimension, it is deeply spiritual. For example, patriotism can be a secular expression of transcendence.

  When Suffering Continues

  But what happens when suffering is not relieved? If suffering occurs when there is a threat to one’s integrity or a loss of a part of a person, then suffering will continue if the person cannot be made whole again. Little is known about this aspect of suffering. Is much of what we call depression merely unrelieved suffering? Considering that depression commonly follows the loss of loved ones, business reversals, prolonged illness, profound injuries to self-esteem, and other damages to personhood, the possibility is real. In many chronic or serious diseases, persons who “recover” or who seem to be successfully treated do not return to normal function. They may never again be employed, recover sexual function, pursue career goals, reestablish family relationships, or reenter the social world, despite a physical cure. Such patients may not have recovered from the nonphysical changes occurring with serious illness. Consider the dimensions of personhood described above, and note that each is threatened or damaged in profound illness. It should come as no surprise, then, that chronic suffering frequently follows in the wake of disease.

  The paradox with which this paper began—that suffering is often caused by the treatment of the sick—no longer seems so puzzling. How could it be otherwise, when medicine has concerned itself so little with the nature and causes of suffering? This lack is not a failure of good intentions. None are more concerned about pain or loss of function than physicians. Instead, it is a failure of knowledge and understanding. We lack knowledge, because in working from a dichotomy contrived within a historical context far from our own, we have artificially circumscribed our task in caring for the sick.

  Attempts to understand all the known dimensions of personhood and their relations to illness and suffering present problems of staggering complexity. The problems are no greater, however, than those initially posed by the question of how the body works—a question that we have managed to answer in extraordinary detail. If the ends of medicine are to be directed to the relief of human suffering, the need is clear.

  I am indebted to Rabbi Jack Bemporad, Dr. Joan Cassell, Peter Dineen, Nancy McKenzie, and Robert Zaner, to Mrs. Dawn McGuire, to the members of the research group on Death, Suffering, and Well-Being of the Hastings Center for their advice and assistance, and to the Arthur Vining Davis Foundations for support of the research group.

  REFERENCES

  Bakan, D. Disease, Pain and Sacrifice: Toward a Psychology of Suffering. Chicago: Beacon Press, 1971.

  Casell, E. “Being and Becoming Dead.” Physicians for Social Responsibility. 1972; 39: 528–42.

  Goodwin, J. S., Goodwin, J. M., Vogel, A. V. “Knowledge and Use of Placebos by House Officers and Nurses.” Annals of Internal Medicine. 1979; 91: 106–10.

  Kanner, R. M., Foley, K. M. “Patterns of Narcotic Use in a Cancer Pain Clinic.” Annals of the New York Academy of Science. 1981; 362: 161–72.

  Marks, R. M., Sachar, E. J. “Undertreatment of Medical Inpatients with Narcotic Analgesics.” Annals of Internal Medicine. 1973; 78: 173–81.

  Zaner, R. The concept of Self: A Phenomenologic Inquiry Using Medicine as a Clue. Athens, Ohio: Ohio University Press, 1981.

  Matt Dugan

  REPOSE

  A medical student struggles to reconcile the needs of his young patient with his ability to bear the pain associated with his feelings for that patient. He has embraced the patient, learned from his family, tasted the food of the patient’s homeland, and enjoyed the warmth of the patient’s family; he struggles with the unfairness of the patient’s condition and senses what his young friend needs. In the end, the student answers his own question about his ability to be all the things his young patient asks him to be.

  MATT DUGAN is a graduate of the University of New England’s College of Osteopathic Medicine and an oncology fellow at the University of Vermont.

  It is 3 A.M. and it has begun to snow a
gain. I am lying on a cot, hospital sheets softened by years of use. These winter nights are long. Daylight is at a premium, not that I’ve seen it in a while. This is my third call night in the past six days, and I know that sleep will once again evade me. But now as I close my eyes, memories come rushing up to greet me. I think of Sarah, long asleep now, under the layers of our down comforter, warm, dreaming, so far away. All I want is to join her, if only in simultaneous sleep, but I know that tonight I cannot.

  I make the long walk from my tiny call room to the tenth floor. Immaculate tile and ethereal white walls encompass me. A hospital ward at night is like a ghost town. It echoes with memories of its patients. Whispering stories of souls come and gone. I can almost see them if I look close enough, but tonight I see no one. The nurses’ station is dimly lit, like the helm of a ship running at night, I think. The captain is fast asleep.

  I approach his room and gently open the door. It is humid in here, the small antechamber where all visitors must wash their hands and don the mask that prevents us from spreading potential pathogens to Faisal. I catch myself in the mirror above the sink—top half of a face. Eyes for a moment look foreign to me. It is me, but I am just older.

  There, cradled in his bed, he looks so small. Suspended by the countless tubes and wires that sustain his ravished immune system, Faisal is sleeping. I am thankful for this. I can see the discoloration extending from his hands up his twig-like arms where they disappear under his white gown. His skin is dark, like wet sand. His head is crowned with a shock of black hair, wavy and wild. I joke with him sometimes that he looks like Elvis. He is my friend.