Charles Edgley. Handbook of Death and Dying. Editor: Clifton D Bryant. Volume 1. Thousand Oaks, CA: Sage Reference, 2003.

Much has been written about death and dying as historically forbidden topics of conversation. As human beings, we will, as the argument goes, do almost anything to avoid talking about either our own deaths or the impending deaths of others (Feifel 1963; Becker 1973; Sudnow 1967; Kübler-Ross 1969). Whether this human tendency is the result of a natural aversion to death, what Becker (1973) calls the “morbidly-minded argument,” or whether it is simply a social convention in this culture (Knutson 1970), it has often been observed that Americans are uncomfortable around the topic of death. Moreover, the status of death and dying as forbidden topics of research is as important as their status as taboo topics for discussion. But since about 1980, much of this, many observers believe, has changed. Rather than being regarded as morbid curiosity seekers, social scientists who conduct research on death and dying have been increasingly sought out for the data their studies have produced. These data have been used to justify both medical and public policy about the dying and have seemingly brought death from the netherworld into the open. Bookstores, both “New Age” and mainstream, now routinely devote entire sections to death, dying, and bereavement. The result is a kind of “Happy Death” movement, as Lyn Lofland (1978) calls it, in which dying is regarded as a problem that we can resolve by talking about it, moving its venue, or legislating its elements, rather than as a predicament to be endured. Indeed, Levine and Scotch (1970) note that dying is emerging as a new social problem to be resolved.

Scholarship on the problems of death and dying, including research concerning the relationships between dying patients and their physicians, nurses, and other health care providers, so novel three decades ago, continues to escalate. Scholarly and professional social science journals have increased the numbers of papers they publish on the subject, and numerous centers have been established whose purpose it is to explore both the social and personal meanings of death processes. Conferences on death studies abound, and the hospice movement alone has spawned a host of work on the problems of dying. Journals devoted to the subjects of death and dying have proliferated. Omega, Advances in Thanatology, Mortality, Essence, Death Studies, and the Journal of Thanatology are but a few of the academically oriented periodicals composed exclusively of reports on death-related research. However, although a large body of evidence makes it clear that there is legitimate scholarly interest in death-related problems, the taboos associated with death still exist, as I will show in this chapter. Moreover, these taboos are especially abundant in medical settings, which remain dedicated to viewing death as an enemy to be vanquished rather than to addressing the complex existential needs of human beings at the edge of life.

In the midst of the new acceptability of death studies, older efforts such as those of Glaser and Straus (1965, 1968) have taken on new significance. Much of Glaser and Straus’s pioneering work dealt with the interactional framework in which dying takes place. Doctors, nurses, the dying patient, and the patient’s family members and friends are all part of an interpersonal network in which the dying act occurs. Glaser and Straus suggest that in many ways this network constructs meanings that are morally negative. Following this line of analysis, I believe that a fruitful way to understand dying is to analyze the interactions within this network from the standpoint of the sociology of deviance.

Sociologists have defined deviance variously in terms of the act, the actor, and the audience reaction to the actor. In this chapter, I draw on and revisit earlier research by Wheeler, Edgley, and Orlando (1977) that formulated a framework for examining the social situation of the dying person in a medical setting. More important, I update the logic of that research in order to explore the dilemmas of terminal patients caught between the existential demands of dying and the problems and concerns of hospitals and other institutional settings in which most dying takes place. In that earlier research, my colleagues and I built a concept of deviance based on the responses of others. We designed our research to test the hypothesis that the reactions of two of the terminal patient’s most important audiences, physicians and nurses, place the patient in a deviant role. We then compared the attitudes of physicians and nurses to see if there were differences in how they viewed the dying person. Finally, we explored some tentative interpretations of those audiences’ reactions to terminal patients. I begin by reviewing that research.

Deviance and the Responses of Others

Early theories of deviance presumed that deviants possess certain inherent traits that differentiate them from nondeviants. Persons were deviant, in this view, because of defects in their bodies, their brains, their genes, their psychologies, or their socialization. Other theorists, following a functionalist analysis of the relationship between acts and society, traced the deviant trait from the actor to the act, assuming that all deviant acts are harmful or injurious to society and are therefore deviant (Gibbs 1966:9). From this perspective, society seeks to maintain itself in a state of equilibrium, and acts that violate the social order, either normatively or even statistically, constitute deviance.

The labeling school of deviance, primarily a construction of sociologists, began in the 1960s to suggest that the reactions of a person’s audiences constitute the main criterion for defining deviance, and that deviance lies neither in the actor nor in the inherent qualities of the act. Howard S. Becker (1963), a leading proponent of this way of thinking, cuts the Gordian knot with his simple assertion that “deviant behavior is behavior that people so label.” He further takes the matter out of both the actor and the act by suggesting that “deviance is not a quality of the act the person commits, but rather a consequence of the application by others of rules and sanctions to an offender. The deviant is one to whom that label has successfully been applied” (p. 9). Erikson (1962) also defines deviance in a similar way when he says, “It is the audience which eventually decides whether or not any given action or actions will become a visible case of deviation” (p. 308). Kitsuse (1962) agrees, arguing that “forms of behavior per se do not differentiate deviants from nondeviants; it is the responses of the conventional and conforming members of the society who identify and interpret behavior as deviant which sociologically transforms persons into deviants” (p. 253).

Gabriel Tarde (1898), a 19th-century sociologist, and Frank Tannenbaum (1979), an early contributor to dramaturgical analysis, writing in the 1930s, suggested that the source of deviance lies in the audience of the actor and not in the actor, but neither scholar developed the logical force of the concept further. In 1951, Edwin Lemert laid a systematic foundation for the current labeling approach. Lemert explains that a continuing pattern of deviance is caused by societal reactions to the discovery and subsequent labeling of the actor’s deviation. He sees two types of deviance: primary and secondary. Primary deviance is the act itself and is inherently meaningless without the response of defining audiences. Lemert then suggests that the labeling of a person’s behavior as deviant, along with the degree and visibility of the deviance, encourages the actor to adopt a deviant role and encourages others to define the actor as deviant. In essence, primary deviations become secondary ones as they are organized and solidified into a pattern of deviant conduct, and it is this secondary deviation that occupies much of society’s attention.

In attempting to refine the labeling perspective, Edwin Schur (1971) defines deviant behavior as “deviant to the extent that it comes to be viewed as involving a personally discreditable departure from a group’s normative expectations, and elicits interpersonal or collective reactions that serve to ‘isolate,’ ‘correct,’ or ‘punish’ individuals engaged in such behavior” (p. 24). And lastly, Rubington and Weinberg (1971) state two fundamental positions taken by exponents of the labeling perspective:

Definition. A social problem or social deviant is defined by societal reactions to a presumed violation of expectations. If in other perspectives behavior and situations themselves were problematic, in this perspective what is problematic are the very conditions under which they come to be defined.
Causes. The cause of the social problem is know-aboutness. For, societal reactions cannot occur until the alleged behavior or situation is known. (P. 169)

The Conceptual Basis for Deviance

Kitsuse (1972) insists that it is necessary to specify what society’s morally negative reactions are directed toward. Unlike other labeling theorists, who stress behavior or acts as the objects of the labeling process, Kitsuse asserts that “deviants are produced by the differential treatment of persons by others … A person may be treated as deviant simply for what he is thought to be” (p. 240). It is in this sense that deviance does not even have to be directed toward concrete acts themselves; it may simply be a label applied to those persons identified as deviant. Given the assumptions and requirements of a situational context, this point will gain added salience later, when I focus the application of this framework on problems of dying in hospital settings.

Both Goffman and Kitsuse thus look at persons as the significant objects of the reactions, and not behavior or attributes. According to Goffman (1963), a person’s virtual social identity is always defined in the context of others. We place an individual in a category that has been socially defined and then anticipate this social identity. When the person actually possesses attributes that make him or her different from our moral expectations, the person becomes stigmatized in some manner.

From this perspective Wheeler et al. (1977) suggested that a deviant is a person who elicits aversive attitudes from audiences of sufficient strength to set him or her apart from others clearly. For the purpose of our research, deviants were persons who elicit aversive feelings and avoidance from those they encounter in the course of everyday life. This perspective, now the dominant one in sociologically informed studies of deviance, has been used only reluctantly by researchers examining medical settings. Because medicine has historically occupied a privileged position in sociological studies (Friedson 1970), researchers have always had a tendency to view medical venues in terms of their stated values rather than analytically in terms of a morally charged framework such as deviance and respectability. But social orders and their requirements remain, and medical environments, where life and death are on the line every day, are especially charged with such moral meanings.

The Problem

In the early research from which this update is derived, my colleagues and I attempted to test the hypothesis that the dying person’s audiences (e.g., physicians and nurses) express aversive attitudes toward the dying person, and that these aversive attitudes are associated with avoidance of the dying person (Wheeler et al. 1977). We also compared the attitudes of nurses with the attitudes of physicians to see if there were any differences in how the two groups react to dying patients. Having determined that dying patients do represent a deviant category, we concluded the study by trying to understand why dying is a form of deviance in medical settings. From the idea that certain persons elicit aversive attitudes from their audiences, we shaped the following hypothesis:
Dying persons elicit aversive attitudes from physicians and nurses that are significantly more aversive than the attitudes elicited by a nondeviant category of person, such as the executive.

This research successfully provided a basis for examination of the entire social situation of the dying person. The attitudes of the medical community toward the dying person had not, at that time, been sufficiently documented, and our research shed considerable light on the social interactions between dying patients and the medical teams surrounding them.

Review of the Literature

The literature on death and dying suggests that attitudes and responses toward the dying are frequently negative in character. Kübler-Ross (1969), recounting the reactions of nurses to dying patients, reports that they express anger, depression, and resentment. For example, one nurse pointed out the “absolute absurdity of wasting precious time on people who cannot be helped any longer”; another reported that when “these people die on me” it always made her feel very bad, and yet another said she got especially angry when “they died on me while other members of the family were present” (p. 252). Kübler-Ross observes that the nurses’ catharsis is “a courageous expression of their dislike for this kind of work mixed with a sense of anger, as if these patients committed an angry act against them by dying in their presence” (p. 252).

Glaser and Straus (1965:83) link the attitudes of medical personnel toward patients who know they are dying to the patients’ conduct. For example, the following are some of the canons that dying patients are expected to obey:

1. They should not attempt to act in a way that brings about or hastens their own death.
2. They should maintain their composure.
3. They should face death with dignity.
4. They should not withdraw from the living.
5. They should cooperate in their own care.
6. They should not, if possible to avoid doing so, do anything that would distress or embarrass the staff.

“A patient who does most of these things,” Glaser and Straus observe, “will be respected” (p. 86). In contrast, those who do not meet their obligations become objects of staff hostility and scorn.

The increasing trend toward dying in hospitals and nursing homes cannot be attributed entirely to the improvement of modern medical technology. It is at least partially attributable to society’s attempt to isolate death and dying and thus minimize their disturbing effect. Blauner (1966:384) has suggested such a connection, observing that modern death control is bureaucratized in order to reduce the disturbance and disruption of the social order associated with death and dying. The coming of the hospice movement, with its efforts to renaturalize death, has done little to alter the role death plays in bureaucratized settings, including, ironically, hospice itself. As hospice has grown into a modern, institutionalized movement, it has itself become increasingly bureaucratized, with a hierarchy of personnel, increasing numbers of rules, and a value system that includes elements of coercion and control. Dying patients are further isolated within the structure of the hospital itself. LeShan observed nurses during their work routines, timing them as they responded when patients summoned them, and discovered that nurses took significantly longer to respond to the calls of dying patients than to those of other patients. When he brought this fact to the nurses’ attention, they indicated that they were not aware of it (Bowers, Jackson, Knight, and LeShan 1981:6-7).

Kasper (1959), referring to the needs and care typically associated with the hopelessly ill, observes that “the dying are … not neglected, but they are very rarely approached with hope or even interest, because, I suppose, they simply will not feed the doctor’s narcissism by responding and getting well” (p. 264). Recalling an incident in which a surgeon remarked during the performance of an operation on a 9-year-old boy “that it was a shame that this boy would not live to marry and have sons of his own,” Kasper describes the reaction of the interns, residents, and nurses who heard the remark in the following manner: “The consensus seemed to be that it was, at least, in bad taste and might even be explained by assuming that the surgeon had been drinking before surgery” (p. 265). This story clearly illustrates the social norm typical of medical personnel, which forbids personal involvement with dying patients (Wheeler et al. 1977).

Glaser and Straus (1965:226-27) treat nurses’ avoidance of dying patients as a strategy for maintaining composure. Indeed, they conclude that it is a general strategy and appropriate under many different circumstances. They suggest that nurses adhere to a general defense strategy by which they maintain their composure during their care of dying patients: “This general strategy is a developmental process, comprising a progressive accumulation of strategies (pertaining to work, to talk with the patient, and to collective moods that develop among the nurses) which serve to reduce involvement in the patient as he approaches death” (p. 227).

Kalish (1966), using a modified form of the Bogardus Social Distance Scale, discovered that more than a third of his sample of 203 college students would not willingly allow a person dying of an incurable disease to live in their immediate neighborhoods. Furthermore, three out of five would not give such a person employment in the field they wish to enter. He found rejection of the person in constant pain to be even greater: “For this sample the only relationship that demands close and immediate personal interaction, the dating relationship, finds the person in pain almost completely rejected” (p. 153). It would appear that the person dying in uncontrolled pain experiences the most extreme form of avoidance.

The Medical Setting: Coping with Death

People who work in health care, and others whose duties bring them into close contact with the critically ill, develop strategies for coping with unpleasant patient situations that they cannot physically avoid. Bowers et al. (1981) identify various “masks” that physicians hide behind to protect themselves against genuine person-to-person encounters with patients. First is the “mask of professional language,” which violates the function of language, “for rather than communicating meaning it denies it” (p. 53). Second is the “mask of cynicism,” through which the “things sacred to the patient are profaned or made common in the attitude of the physician” (pp. 53-54). The horseplay and profanity that medical students typically employ when they first approach their work with cadavers are only the beginning of a series of such defenses that physicians employ throughout their career.

Third is the “mask of materiality.” In this strategy, the physician keeps something material—an oxygen mask, a stethoscope, a hypodermic needle—between him- or herself and the patient. As Bowers et al. explain, “Whatever it is, it becomes a focus of attention which screens the patient’s feelings and anxiety from the tenderness of the physician’s soul and makes it possible for the physician to go on about his tasks with protection against a full encounter with the patient” (p. 54).

The fourth mask is the “mask of impersonality.” The patient loses his or her identity as a person and becomes a case or a disease. The nurse who replies to a physician’s order to check how many patients are waiting by saying that “the heart and lung are still here” illustrates the use of this mask. Bowers et al. note that “the tendency to refer to the disease rather than the patient is a way of taking ahold of only that part of the being where security exists” (p. 54).

The “mask of ritualized action” is the fifth mask. For example, taking the pulse of a patient “is a point of contact that may be reassuring to the patient without really meaning much personally to the physician” (pp. 54-55). According to Bowers et al., ritualized actions “are structured types of behavior that stand between the person of the therapist and the person of the patient” (p. 55).

The sixth mask, the “mask of hospital routine, subtly strips the patient of those aspects of his life that measure his personality and his dignity” by making “the personal interests of the patient … secondary to the hospital routine” (p. 55). The seventh and final mask is the “mask of the ‘it-it’ relationship.” In using this mask, in addition to making the person of the patient an “it” (i.e., a case or a disease), the physician also makes him- or herself an “it” by assuming “the role of the dispenser of precise medical knowledge” (p. 55). Note here that the “it-it” relationship with the dying patient is also the crux of all deviance labels. When persons are labeled deviant, they are transformed from persons into social categories that are defamed.

Bowers and her associates conclude that “at no point in the patient-physician relationship are the masks worn with such security as in the encounter with the dying patient” (p. 56). Thus the physician can avoid the dying patient psychologically and emotionally, even if he or she cannot always avoid the patient physically. Most deviance labels are asserted in the same way. Labels such as “criminal” or “mentally ill” accomplish the same purpose. They are ways of morally distancing ourselves from the miscreant, thereby making it easier to abandon them as objects of legitimate social concern. The necessity for doing so with the dying is, in some ways, more morally compelling than with other, more common, deviant labels. Members of the labeling audience can always tell themselves that they will never become criminals or a mental patients. But everyone dies, and by treating the dying as objects of deviance, audience members can further participate in the ritual of denying their own death.

Avoidance may also be viewed as a means of controlling the dying patient. When individuals cannot modify the disposition of a situation, they can control its consequences for themselves by avoiding it. However, medical personnel often control the disruption or unpleasantness caused by the dying person through even more direct action. One of the control measures they use most frequently with dying patients is to make decisions for them. As Kübler-Ross (1969:8) has observed, decisions concerning if, when, and where a dying patient should be hospitalized are often made by persons other than the patient. She eloquently describes the dying person’s hospital career:

Our presumed patient has now reached the emergency room. He will be surrounded by busy nurses, orderlies, interns, resident, a lab technician who takes the cardiogram. He may be moved to X-ray and he will overhear options of his condition and discussions and questions to members of the family. He slowly but surely is beginning to be treated like a thing. He is no longer a person. Decisions are made often without his opinion. If he tries to rebel he will be sedated and after hours of waiting and wondering whether he has the strength, he will be wheeled into the operating room or intensive treatment unit and become an object of great concern and great financial investment. He may cry for rest, peace, and dignity, but he will get infusions, transfusions, a heart machine, or tracheotomy if necessary. He may want one single person to stop for one single minute so that he can ask one single question—but he will get a dozen people around the clock, all busily preoccupied with his heart rate, pulse, electrocardiogram or pulmonary function, his secretions or excretions but not with him as a human being. He may wish to fight it all but it is going to be a useless fight since all this is done in the fight for his life, and if they can save his life they can consider the person afterwards. Those who consider the person first may lose precious time to save his life! At least this seems to be the rationale or justification behind all of this—or is it? Is the reason for this increasingly mechanical, depersonalized approach our own defensiveness? Is this approach our own way to cope with and repress the anxieties that a terminally or critically ill patient evokes in us? Is our concentration on equipment, on blood pressure, our desperate attempt to deny the impending death which is so frightening and discomforting to us that we displace all our knowledge onto machines, since they are less close to us than the suffering face of another human being which would remind us once more of our lack of omnipotence, our own limits and failures, and last but not least perhaps our own mortality? (Pp. 8-9)

In addition to demonstrating that others make decisions for dying patients, Kübler-Ross suggests that drugs are often used to control them and reinforces the typology of masks as a means of avoidance. Bowers et al. (1981) also suggest that drugs play an important role in managing the patient for the benefit of the staff: