by Robert Coles
Whether or not I did, I will never know.
We chatted about his family and past operations. We got around to what was scheduled for tomorrow. Firm and assured, he told me, just like he had “the attendings,” he could not live like he was now. He was ready.
And that was that.
Well, he went to surgery the next day for a double valve replacement at 82. It was not successful.
He held on for a couple of days, but inevitably, I guess, he passed on.
What was I to think?
I was perhaps best acquainted with this gentleman. For gentleman he certainly was. I can’t help but think that almost the last knowledge of him was my finger over his prostate. Nevertheless, he told me—and I do firmly believe—this is what he wanted. He could not live the way he was.
Yet questions remain. And always will.
Several days after Mr. T passed on and I navigated through my days with guarded feelings, Doctor R stepped on an elevator with me. He was a cardiologist I had seen around but was not working with directly. Without pretense, he said to me, “Sorry to hear about Mr. T. I know you were working with him.”
“Yeah,” I said, not knowing what else to say.
But when the elevator stopped and Doctor R got off, everything felt a little more balanced.
Eric J. Cassel
THE NATURE OF SUFFERING AND THE GOALS OF MEDICINE
Eric J. Cassel’s landmark essay, first published in the New England Journal of Medicine, explores a paradox—that suffering is often caused during treatment of the sick by those entrusted with healing. Cassel probes the delicate relationship between pain and suffering, and the role of the physician in understanding both. He makes a plea for understanding “all the known dimensions of personhood and their relations to illness and suffering.”
ERIC J. CASSEL serves on the National Bioethics Advisory Commission’s Subcommittee on Human Subjects. He is the author of Changing Values in Medicine; The Nature of Suffering and the Goals of Medicine, a book based on this essay; Talking with Patients; The Healer’s Art; and Doctoring: The Nature of Primary Care Medicine.
The obligation of physicians to relieve human suffering stretches back into antiquity. Despite this fact, little attention is explicitly given to the problem of suffering in medical education, research, or practice. I will begin by focusing on a modern paradox: Even in the best settings and with the best physicians, it is not uncommon for suffering to occur not only during the course of a disease but also as a result of its treatment. To understand this paradox and its resolution requires an understanding of what suffering is and how it relates to medical care.
Consider this case: A 35-year-old sculptor with metastatic disease of the breast was treated by competent physicians employing advanced knowledge and technology and acting out of kindness and true concern. At every stage, the treatment as well as the disease was a source of suffering to her. She was uncertain and frightened about her future, but she could get little information from her physicians, and what she was told was not always the truth. She had been unaware, for example, that the irradiated breast would be so disfigured. After an oophorectomy and a regimen of medications, she became hirsute, obese, and devoid of libido. With tumor in the supraclavicular fossa, she lost strength in the hand that she had used in sculpturing, and she became profoundly depressed. She had a pathologic fracture of the femur, and treatment was delayed while her physicians openly disagreed about pinning her hip.
Each time her disease responded to therapy and her hope was rekindled, a new manifestation would appear. Thus, when a new course of chemotherapy was started, she was torn between a desire to live and the fear that allowing hope to emerge again would merely expose her to misery if the treatment failed. The nausea and vomiting from the chemotherapy were distressing, but no more so than the anticipation of hair loss. She feared the future. Each tomorrow was seen as heralding increased sickness, pain, or disability, never as the beginning of better times. She felt isolated because she was no longer like other people and could not do what other people did. She feared that her friends would stop visiting her. She was sure that she would die.
This young woman had severe pain and other physical symptoms that caused her suffering. But she also suffered from some threats that were social and from others that were personal and private. She suffered from the effects of the disease and its treatment on her appearance and abilities. She also suffered unremittingly from her perception of the future.
What can this case tell us about the ends of medicine and the relief of suffering? Three facts stand out: The first is that this woman’s suffering was not confined to her physical symptoms. The second is that she suffered not only from her disease but also from its treatment. The third is that one could not anticipate what she would describe as a source of suffering; like other patients, she had to be asked. Some features of her condition she would call painful, upsetting, uncomfortable, and distressing, but not a source of suffering. In these characteristics her case was ordinary.
In discussing the matter of suffering with lay persons, I learned that they were shocked to discover that the problem of suffering was not directly addressed in medical education. My colleagues of a contemplative nature were surprised at how little they knew of the problem and how little thought they had given it, whereas medical students tended to be unsure of the relevance of the issue to their work.
The relief of suffering, it would appear, is considered one of the primary ends of medicine by patients and lay persons, but not by the medical profession. As in the care of the dying, patients and their friends and families do not make a distinction between physical and nonphysical sources of suffering in the same way that doctors do.
A search of the medical and social-science literature did not help me in understanding what suffering is; the word “suffering” was most often coupled with the word “pain,” as in “pain and suffering.” (The databases used were Psychological Abstracts, the Citation Index, and the Index Medicus.)
This phenomenon reflects a historically constrained and currently inadequate view of the ends of medicine. Medicine’s traditional concern primarily for the body and for physical disease is well known, as are the widespread effects of the mind-body dichotomy on medical theory and practice. I believe that this dichotomy itself is a source of the paradoxical situation in which doctors cause suffering in their care of the sick. Today, as ideas about the separation of mind and body are called into question, physicians are concerning themselves with new aspects of the human condition. The profession of medicine is being pushed and pulled into new areas, both by its technology and by the demands of its patients. Attempting to understand what suffering is and how physicians might truly be devoted to its relief will require that medicine and its critics overcome the dichotomy between mind and body and the associated dichotomies between subjective and objective and between person and object.
In the remainder of this paper I am going to make three points. The first is that suffering is experienced by persons. In the separation between mind and body, the concept of the person, or personhood, has been associated with that of mind, spirit, and the subjective. However, as I will show, a person is not merely mind, merely spiritual, or only subjectively knowable. Personhood has many facets, and it is ignorance of them that actively contributes to patients’ suffering. The understanding of the place of the person in human illness requires a rejection of the historical dualism of mind and body.
The second point derives from my interpretation of clinical observations: Suffering occurs when an impending destruction of the person is perceived; it continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner. It follows, then, that although suffering often occurs in the presence of acute pain, shortness of breath, or other bodily symptoms, suffering extends beyond the physical. Most generally, suffering can be defined as the state of severe distress associated with events that threaten the intactness of the pe
rson.
The third point is that suffering can occur in relation to any aspect of the person, whether it is in the realm of social roles, group identification, the relation with self, body, or family, or the relation with a transpersonal, transcendent source of meaning. Below is a simplified description or “topology” of the constituents of personhood.
“Person” Is Not “Mind”
The split between mind and body that has so deeply influenced our approach to medical care was proposed by Descartes to resolve certain philosophical issues. Moreover, Cartesian dualism made it possible for science to escape the control of the church by assigning the noncorporeal, spiritual realm to the church, leaving the physical world as the domain of science. In that religious age, “person,” synonymous with “mind,” was necessarily off limits to science.
Changes in the meaning of concepts like that of personhood occur with changes in society, while the word for the concept remains the same. This fact tends to obscure the depth of the transformations that have occurred between the seventeenth century and today. People simply are “persons” in this time, as in past times, and they have difficulty imagining that the term described something quite different in an earlier period when the concept was more constrained.
If the mind-body dichotomy results in assigning the body to medicine, and the person is not in that category, then the only remaining place for the person is in the category of mind. Where the mind is problematic (not identifiable in objective terms), its very reality diminishes for science, and so, too, does that of the person. Therefore, so long as the mind-body dichotomy is accepted, suffering is either subjective and thus not truly “real”—not within medicine’s domain—or identified exclusively with bodily pain. Not only is such an identification misleading and distorting, for it depersonalizes the sick patient, but it is itself a source of suffering. It is not possible to treat sickness as something that happens solely to the body without thereby risking damage to the person. An anachronistic division of the human condition into what is medical (having to do with the body) and what is nonmedical (the remainder) has given medicine too narrow a notion of its calling. Because of this division, physicians may, in concentrating on the cure of bodily disease, do things that cause the patient as a person to suffer.
An Impending Destruction of Person
Suffering is ultimately a personal matter. Patients sometimes report suffering when one does not expect it, or do not report suffering when one does expect it. Furthermore, a person can suffer enormously at the distress of another, especially a loved one.
In some theologies, suffering has been seen as bringing one closer to God. This “function” of suffering is at once its glorification and its relief. If, through great pain or deprivation, someone is brought closer to a cherished goal, that person may have no sense of having suffered but may instead feel enormous triumph. To an observer, however, only the deprivation may be apparent. This cautionary note is important because people are often said to have suffered greatly, in a religious context, when they are known only to have been injured, tortured, or in pain, not to have suffered.
Although pain and suffering are closely identified in the medical literature, they are phenomenologically distinct. The difficulty of understanding pain and the problems of physicians in providing adequate relief of physical pain are well known.
The greater the pain, the more it is believed to cause suffering. However, some pain, like that of childbirth, can be extremely severe and yet considered rewarding. The perceived meaning of pain influences the amount of medication that will be required to control it. For example, a patient reported that when she believed the pain in her leg was sciatica, she could control it with small doses of codeine, but when she discovered that it was due to the spread of malignant disease, much greater amounts of medication were required for relief. Patients can writhe in pain from kidney stones and by their own admission not be suffering, because they “know what it is”; they may also report considerable suffering from apparently minor discomfort when they do not know its source. Suffering in close relation to the intensity of pain is reported when the pain is virtually overwhelming, such as that associated with a dissecting aortic aneurysm. Suffering is also reported when the patient does not believe that the pain can be controlled. The suffering of patients with terminal cancer can often be relieved by demonstrating that their pain truly can be controlled; they will then often tolerate the same pain without any medication, preferring the pain to the side effects of their analgesics. Another type of pain that can be a source of suffering is pain that is not overwhelming but continues for a very long time.
In summary, people in pain frequently report suffering from the pain when they feel out of control, when the pain is overwhelming, when the source of the pain is unknown, when the meaning of the pain is dire, or when the pain is chronic.
In all these situations, persons perceive pain as a threat to their continued existence—not merely to their lives, but to their integrity as persons. That this is the relation of pain to suffering is strongly suggested by the fact that suffering can be relieved, in the presence of continued pain, by making the source of the pain known, changing its meaning, and demonstrating that it can be controlled and that an end is in sight.
It follows, then, that suffering has a temporal element. In order for a situation to be a source of suffering, it must influence the person’s perception of future events. (“If the pain continues like this, I will be overwhelmed”; “If the pain comes from cancer, I will die”; “If the pain cannot be controlled, I will not be able to take it.”) At the moment when the patient is saying, “If the pain continues like this, I will be overwhelmed,” he or she is not overwhelmed. Fear itself always involves the future. In the case with which I opened this paper, the patient could not give up her fears of her sense of future, despite the agony they caused her. As suffering is discussed in the other dimensions of personhood, note how it would not exist if the future were not a major concern.
Two other aspects of the relation between pain and suffering should be mentioned. Suffering can occur when physicians do not validate the patient’s pain. In the absence of disease, physicians may suggest that the pain is “psychological” (in the sense of not being real) or that the patient is “faking.” Similarly, patients with chronic pain may believe after a time that they can no longer talk to others about their distress. In the former case the person is caused to distrust his or her perceptions of reality, and in both instances social isolation adds to the person’s suffering.
Another aspect essential to an understanding of the suffering of sick persons is the relation of meaning to the way in which illness is experienced. The word “meaning” is used here in two senses. In the first, to mean is to signify, to imply. Pain in the chest may imply heart disease. We also say that we know what something means when we know how important it is. The importance of things is always personal and individual, even though meaning in this sense may be shared by others or by society as a whole. What something signifies and how important it is relative to the whole array of a person’s concerns contribute to its personal meaning. “Belief” is another word for that aspect of meaning concerned with implications, and “value” concerns the degree of importance to a particular person.
The personal meaning of things does not consist exclusively of values and beliefs that are held intellectually; it includes other dimensions. For the same word, a person may simultaneously have a cognitive meaning, an affective or emotional meaning, a bodily meaning, and a transcendent or spiritual meaning. And there may be contradictions in the different levels of meaning. The nuances of personal meaning are complex, and when I speak of personal meanings I am implying this complexity in all its depth—known and unknown. Personal meaning is a fundamental dimension of personhood, and there can be no understanding of human illness or suffering without taking it into account.
A Simplified Description of the Person
A simple topology of a person
may be useful in understanding the relation between suffering and the goals of medicine. The features discussed below point the way to further study and to the possibility of specific action by individual physicians.
Persons have personality and character. Personality traits appear within the first few weeks of life and are remarkably durable over time. Some personalities handle some illnesses better than others. Individual persons vary in character as well. During the heyday of psychoanalysis in the 1950s, all behavior was attributed to unconscious determinants: No one was bad or good; they were merely sick or well. Fortunately, that simplistic view of human character is now out of favor. Some people do in fact have stronger characters and bear adversity better. Some are good and kind under the stress of terminal illness, whereas others become mean and offensive when even mildly ill.
A person has a past. The experiences gathered during one’s life are a part of today as well as yesterday. Memory exists in the nostrils and the hands, not only in the mind. A fragrance drifts by, and a memory is evoked. My feet have not forgotten how to roller-skate, and my hands remember skills that I was hardly aware I had learned. When these past experiences involve sickness and medical care, they can influence present illness and medical care. They stimulate fear, confidence, physical symptoms, and anguish. It damages people to rob them of their past and deny their memories, or to mock their fears and worries. A person without a past is incomplete.
Life experiences—previous illness, experiences with doctors, hospitals, and medications, deformities and disabilities, pleasures and successes, miseries and failures—all form the nexus for illness. The personal meaning of the disease and its treatment arises from the past as well as the present. If cancer occurs in a patient with self-confidence from past achievements, it may give rise to optimism and a resurgence of strength. Even if it is fatal, the disease may not produce the destruction of the person but, rather, reaffirm his or her indomitability. The outcome would be different in a person for whom life had been a series of failures.