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.
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:
- They should not attempt to act in a way that brings about or hastens their own death.
- They should maintain their composure.
- They should face death with dignity.
- They should not withdraw from the living.
- They should cooperate in their own care.
- 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:
In addition to the usual masks, there is the sedation which can be administered in order to take the patient and his unacceptable behavior farther away from any relationship that might exist between him and those around him. In effect, administering a sedation [sic] is often tantamount to saying to the patient, “If you must die, please go off and do it quietly while I am not looking.” It amounts to a request to the patient to put on a mask that meets his obligation in the “it- it” relationship comparable to the masks the physician wears in avoiding genuine encounter with the person who is ill. (P. 56)In the Wheeler et al. (1977) study, my colleagues and I used a self-administered questionnaire to test the hypothesis that dying patients represent a form of deviance in hospital settings. We drew two samples, one of physicians and the other of nurses. The physician sample was composed of 68 private practitioners and 13 members of the attending staff of a large teaching hospital; the nurse sample comprised 133 nurses working in the same teaching hospital. The questionnaire was divided into four parts. The first part gathered demographic information, the second and third parts were composed of attitude scales, and the final part consisted of 12 statements designed to elicit information about the respondent’s attitudes, beliefs, and behavior regarding the dying person.The second part of the questionnaire used a semantic differential scale to measure the meanings and attitudes elicited by six “person concepts”—a dying person, an alcoholic, a person who has tuberculosis, an atheist, an emotionally disturbed person, and an executive. The scale measured three dimensions: evaluation, potency, and activity. The respondent rated the object or person concept on a 7-point scale, the two poles of which were defined by polar adjectives. For example:
Desirable __ __ __ __ __ __ __ Undesirable
A score of 1 was assigned to the most positive response and 7 to the most negative. We then computed a composite score by squaring the three factor scores, summing the squares, and extracting the square root of the sum of the squares. We tested four minor hypotheses to determine if age, nursing certification, medical specialization of doctor, and type of nurse were associated with aversive attitudes and avoidance behavior.
The third part of the questionnaire consisted of a modified social distance scale composed of items ranging from intimate relationships to complete avoidance. Social distance scores ranged from 1 through 7, with a higher score showing greater social distance between the respondent and the person concept he or she was rating.
We measured attitudes elicited by dying persons, executives, and the four other person concepts by asking respondents to rate their feelings toward these person concepts on a semantic differential scale and social distance scale. We reasoned that if respondents rated the dying person negatively and the executive, traditionally nondeviant, positively while at the same time rating traditionally deviant types negatively, one could argue that the dying person elicited attitudes more similar to those elicited by deviant types than to those elicited by nondeviant types. We tested attitudes elicited by all six person concepts to see if they were significantly different from one another.
Our major hypothesis stated that dying persons elicit attitudes from physicians and nurses that are significantly more aversive than the attitudes elicited by a nondeviant category of persons, such as the executive. That proved to be the case: Both nurses and physicians ranked executives more favorably and dying patients more aversively. Nurses tended to rank alcoholics slightly more aversively than dying persons, whereas physicians ranked the emotionally disturbed and the alcoholic slightly more aversively than the dying patient. Indeed, both the doctors and the nurses, on standard social distance scales, suggested they would rather spend time working with tubercular patients, atheists, or even the emotionally disturbed than they would with dying patients. Of course, the fact that they rated the dying patient more aversively does not mean that they viewed the patient as “deviant.” We were reluctant to claim that our study actually documented deviance, suggesting instead that we had merely shown aversive attitudes toward the dying, but the direction of the data are nonetheless clear and pointed.
Dying as Deviance: The Current Situation
The literature discussed above is now almost 30 years old. Has the situation changed? If so, how? These issues are the subject of the remainder of this chapter. Although there has been no empirical follow-up to the Wheeler et al. study, several clues suggest that there continues to be a stigma against the dying that is regularly constructed in medical settings. One such clue comes from the logical force of Glaser and Straus’s conceptualization of awareness contexts and the subsequent research this rich concept has spawned. Awareness contexts represent a powerful way of assessing any possible changes in the way dying patients are treated. Awareness contexts are inherently tied to the labeling process, for, as noted above, the direct cause of all deviance from a societal point of view is “know-aboutness.” Societal reactions cannot occur until the alleged behavior or situation is known, and this “knowing” is what awareness contexts are all about.
As Glaser and Straus articulate, the following four possibilities, which are characteristic of all social situations, have particular salience for the dying:
Open awareness: In this awareness context, both the medical team and the patient know the person is dying, and (most important) both act on what they know. All aspects of the patient’s condition are “open.”
Closed awareness: In this context, one side knows and the other side is kept unaware. In the case of dying, the medical team is typically in possession of the relevant information about the dying person, and the patient is, for a variety of reasons, kept unaware. The deviance framework discussed above both establishes and encourages closed awareness.
Suspicion awareness: In this context, one side knows and the other side suspects the truth of the situation but does not know for sure. In the case of the dying patient, the medical team is in possession of information and with- holds it from the dying patient, who tries to confirm his or her suspicions about the situation.
Mutual pretense: Occupying a position somewhere between open and closed awareness, mutual pretense has elements of both. Both sides know the truth, but both act as if something else is the case. Both the medical team and the patient know that the patient is dying, but both sides act as if he or she is merely ill.
Recent studies suggest that there are far more institutional (and legal) reasons for telling patients the truth than for keeping it from them, and as a result, doctors and nurses both are inclined toward more openness in communicating with the terminally ill and their families about the dying patient’s condition. Seale (1991) notes that, influenced at least partially by the hospice movement, professionals now have a general preference for open awareness. However, that preference is “tempered by the consideration that bad news needs to be broken slowly, in a context of support, while recognizing that not everyone wishes to know all” (p. 943).
The Ambiguities of Open Awareness
Although it is clear that today there is far more open awareness than has been the case in the past with dying patients, there are still substantial ambiguities even (perhaps especially) when the awareness context is open. Open awareness can lead to a host of conflicts that closed awareness effectively shuts off. For example, a patient may want to die in a way that may be difficult for the medical team to arrange. He or she may want to die without pain, in private, and “with dignity,” yet all of these concepts may have entirely different meanings for the dying person than they do for the medical team. In this sense, deviant labels arise directly because of the disparity between what the dying patient wants and what those who attend to the patient require.
Those dying patients who sense the implicit demands of the medical staff and comply with them are rewarded with labels such as “good patient,” whereas those who diverge from the staff program are greeted with deviant labels such as “difficult” or “demanding.” Pain management remains a negotiated order in which the patient and medical staff deal with each other from different moral frameworks. Study findings have repeatedly suggested that medical personnel continue to have both medical and legal concerns about patients becoming addicted and are reluctant to prescribe appropriate drugs in adequate dosages. Moreover, patients themselves often feel they should endure pain as a sign of moral strength and subscribe to various myths about the subject because they have not been educated to the contrary (DeSpelder and Strickland 1999:182). These disparities between what the dying patient wants and what staff are able and willing to provide constitute a major arena in which deviant labels can arise.
Awareness Contexts as Moral Matters
Establishing and maintaining an awareness context with terminally ill patients is an intensely moral matter. Awareness contexts do not and cannot flow naturally from any particular biophysical state, no matter how dire the diagnosis is. They are inherently social. This is a fundamental tenet of interactionist approaches to relationships between the self and others, and one reason researchers working within this theoretical tradition insist on maintaining a distinction between biophysical and social states of affairs (Friedson 1970; Miller 1978).
Moreover, the new openness and naturalization of dying in medical settings has led some scholars to suggest a reversal of taboos. Previously, medical staff shunned the dying patient as if he or she were engaged in deviant behavior. But now, as Armstrong (1987; cited in Seale 1991) has suggested, the current medical enthusiasm for breaking the silence and ending the taboo has led to a kind of “medical interrogation” in which patients are maneuvered into “confessing” their own death. Those who choose not to participate in this new “openness” are treated as if they have done something wrong. This seems to be exactly what happened with those trained in the tradition of Kübler-Ross. Descriptions of the process that dying patients tend to follow have been transformed in treatment settings into prescriptions for the dying. To die in denial, in this new “open” setting, is to do something morally wrong.
There is also the dance that takes place between the medical team and the dying patient as the team tries to establish whether or not the patient even wishes to be in open awareness about his or her condition. For the patient terminally ill with cancer, the nature of the disease itself makes it difficult to maintain a stance of closed awareness, but many other serious illnesses contain considerable prognostic latitude for both the doctor and the patient. In his study of British physicians, Seale (1991) compared how doctors and dying patients communicated with one another in 1969 against such communication in 1987. He found that doctors in 1987 were more likely to tell their dying patients the truth, but he also found that they tended to wait to be asked and generally backed off and let the patients guide them on the issue of how much to tell and when. Seale’s findings support Glaser and Straus’s (1965) contention that awareness of dying is a definition of the situation intimately related to issues of time. Finally, Seale’s findings demonstrate another aspect of deviance: distinguishing between those who are morally entitled to the truth and those who can be kept in the dark:
Results show that instances where the relatives were given information and the dying are not are still quite common. Patients are still highly likely to be left to guess for themselves that they are dying and the emotional isolation that this produces can only be guessed at in the absence of patients’ own stories. (P. 951)