Awareness of Dying

Barney G. Glaser, Anselm L. Strauss

• Éditeur: Routledge
• Année: 2017
• ISBN:
  9781351327909
• Édition: 1
• Sujet: Social Sciences
• Sous-sujet: Sociology

Should patients be told they are dying? How do families react when one of their members is facing death? Who should reveal that death is imminent? How does hospital staff-doctors, nurses, and attendants-act toward the dying patient and his family?

Part One

Introduction

1

The Problem
of Awareness of Dying

American perspectives on death seem strangely paradoxical. Our newspapers confront the brutal fact of death directly, from the front page headlines to the back page funeral announcements. Americans seem capable of accepting death as an everyday affair—someone is always dying somewhere, frequently under most unhappy circumstances. To account for this absorbing interest in death (even death by violence), one need not attribute to the reading public an especially vigorous appetite for gruesome details. Death is, after all, one of the characteristic features of human existence, and the people of any society must find the means to deal with this recurring crisis. Presumably one way to deal with it is to talk and read about it.

Curiously, however, Americans generally seem to prefer to talk about particular deaths rather than about death in the abstract. Death as such has been described as a taboo topic for us, and we engage in very little abstract or philosophical discussion of death.¹ Public discussion is generally limited to the social consequences of capital punishment or euthanasia.

Americans are characteristically unwilling to talk openly about the process of dying itself; and they are prone to avoid telling a dying person that he is dying. This is, in part, a moral attitude: life is preferable to whatever may follow it, and one should not look forward to death unless he is in great pain.

This moral attitude appears to be shared by the professional people who work with or near the patients who die in our hospitals. Although trained to give specialized medical or nursing care to terminal patients, much of their behavior towards death resembles the layman’s. The training that physicians and nurses receive in schools of medicine or nursing equips them principally for the technical aspects of dealing with patients. Medical students learn not to kill patients through error, and to save patients’ lives through diagnosis and treatment, but their teachers emphasize very little, or not at all, how to talk with dying patients, how—or whether—to disclose an impending death, or even how to approach the subject with the wives, children and parents of dying patients.²

Similarly, students at schools of nursing are taught how to give nursing care to terminal patients, as well as how to give “post-mortem care,” but only recently have the “psychological aspects” of nursing care been included in their training. Few teachers talk about such matters, and they generally confine themselves to a lecture or two near the end of the course, sometimes calling in a psychiatrist to give a kind of “expert testimony.”³ Although doctors and nurses in training do have some experience with dying patients, the emphasis is on the necessary techniques of medicine or nursing, not on the fact of dying itself. As a result, sometimes they do not even know they are treating or caring for a dying patient.

Although physicians and nurses may thus exhibit considerable technical skill in handling the bodies of terminal patients, their behavior to them otherwise is actually outside the province of professional standards. In hospitals, as in medical and nursing schools, discussion of the proper ways to manage dying patients tends to be only in strictly technical medical and nursing terms. Also, staff members are not required to report to each other, or to their superiors, what they have talked about with dying patients. As we will discuss later, they are “accountable” only for the technical aspects of their work with the dying.⁴

Medical and nursing personnel commonly recognize that working with and around dying patients is upsetting and sometimes traumatic. Consequently some physicians purposely specialize in branches of medicine that will minimize their chances of encountering dying patients; many nurses frankly admit a preference for wards or fields of nursing where there is little confrontation with death. Those who bear the brunt of caring for terminal patients tend to regard its hazards as inevitable— either one “can take” working with these patients or he cannot. Physicians and nurses understandably develop both standardized and idiosyncratic modes of coping with the worst hazards. The most standard mode—recognized by physicians and nurses themselves—is a tendency to avoid contact with those patients who, as yet unaware of impending death, are inclined to question staff members, with those who have not “accepted” their approaching deaths, and with those whose terminality is accompanied by great pain. As our book will attest, staff members’ efforts to cope with terminality often have undesirable effects on both the social and psychological aspects of patient care and their own comfort. Personnel in contact with terminal patients are always somewhat disturbed by their own ineptness in handling the dying.

The social and psychological problems involved in terminality are perhaps most acute when the dying person knows that he is dying. For this reason, among others, American physicians are quite reluctant to disclose impending death to their patients,⁵ and nurses are expected not to disclose it without the consent of the responsible physicians. Yet there is a prevailing belief among them that a patient who really wants to know will somehow discover the truth without being told explicitly. Some physicians, too, maneuver conversations with patients so that disclosure is made indirectly. In any event, the demeanor and actions of a patient who knows or suspects that he is dying differ from those of a patient who is not aware of his terminality. The problem of “awareness” is crucial to what happens both to the dying patient and to the people who give him medical and nursing care.

From one point of view the problem of awareness is a technical one: should the patient be told he is dying—and what is to be done if he knows, does not know, or only suspects? But the problem is also a moral one, involving professional ethics, social issues, and personal values. Is it really proper, some people have asked, to deny a dying person the opportunity to make his peace with his conscience and with his God, to settle his affairs and provide for the future of his family, and to control his style of dying, much as he controlled his style of living? Does anyone, the physician included, have the right to withhold such information? Someone must decide whether to disclose, and when to disclose, but on whose shoulders should this responsibility fall—the physician, the family, or the patient? The rationale for making such decisions, as well as for designating who will make them, is not based on technical reasoning alone but also on various ethical, moral and human considerations.

Both the human and the technical aspects of the awareness problem are becoming increasingly momentous, for at least two reasons. One is that most Americans no longer die at home. Last year in the United States, 53 per cent of all deaths occurred in hospitals, and many more in nursing homes.⁶ The family may be present much of the time while a person is dying, but he is also surrounded by many strangers, however compassionate and technically skilled they may be. Dying away from home is compounded by a noticeable and important medical trend: because medical technology has vastly improved, fewer people are dying from acute diseases and more from chronic diseases. Moreover, the usual duration of most chronic diseases has increased, so that terminal patients, in the aggregate, take longer to die than they used to. They may spend this time in the hospital, or return several times to the hospital while they are dying.

Dying away from home, and from a chronic disease, will become more common during the next decades, making the problem of “awareness” even more salient to everyone concerned. Hospitals are scientific establishments and staff members are expected to make competent judgments about what is wrong with patients and to assess their prospects for recovering—or not recovering. For this very reason more and more terminal patients will persist in asking questions, and in expecting explicit, detailed answers, about the nature of their illness, how long the hospitalization will last, and why, and in what shape they will leave for home. Inevitably, more of them will discover, or be told, the truth. (The widespread improvement in educational level will strengthen these trends.) And so it is predictable that the problem of awareness will become more and more central to what happens as people pass from life to death in American hospitals. That problem is the principal subject of our book.

Awareness and the Study of Interaction

This book will be directed to two audiences: those who are concerned with dying in our hospitals (especially those who must deal with it), and sociologists (especially those who study social interaction). Our book, then, can be read for its practical details as well as for its theoretical aspects. Writing to such a double audience is only slightly hazardous, we believe, because we are convinced that sociologists cannot say anything profoundly useful unless it is of theoretical interest to sociologists themselves.

As noted, our book is based upon extensive field observation and interviewing done at hospitals in the San Francisco metropolitan area. The research was part of a larger study of how nursing and medical personnel give care to terminal patients. In Appendix A, both the larger project and the field-work methods which underlie our conclusions in this book are described briefly. In general, our project was focused on what kinds of thing happen around patients as they lie dying in American hospitals. In this book, we began by narrowing that focus to the following questions. What are the recurrent kinds of interaction between dying patient and hospital personnel? What kinds of tactics are used by the personnel who deal with the patient? Under what conditions of hospital organization do these kinds of interaction and these tactics occur, and how do they affect the patient, his family, the staff, and the hospital itself, all of whom are involved in the situations surrounding dying? In finding answers to these questions, we discovered that most variations could be accounted for by what each party to the dying situation was aware of about the patient’s fate. Thus we further narrowed our focus to dealing with these questions as they related to awareness: a powerful explanatory variable.

These questions are of immense practical relevance to hospital personnel, who are confronted daily with the exceedingly delicate and difficult task of caring for terminal patients. But outsiders like ourselves, however observant, can contribute little by merely narrating the difficulties experienced by hospital “insiders,” and even less by offering a few suggestions for coping better with those difficulties. (We are chary of prescriptions and evaluations, though in Chapter 14 we shall address ourselves to how our theory of awareness bears upon issues of practical understanding and control.) A sociologist contributes most when he reports what he has observed in such a fashion that his account rings true to insiders, but also in such a fashion that they themselves would not have written it. That is, most useful sociological accounts are precisely those which insiders recognize as sufficiently inside to be true but not so “inside” that they reveal only what is already known. And since insiders, especially those in stressful circumstances, do not always agree with each other on all matters, a sociological narrative must also take this disagreement into account. The sociologist’s obligation is to report honestly but according to his own lights.

These two factors—how the report is written and what it adds to what is already known by insiders—also permit the sociologist to contribute to the factual knowledge of his own craft. To the degree that the sociologist treats his data abstractly, he also has an opportunity to say something important to his own colleagues. So, in this book, we address ourselves to the problem of how to conceptualize and account for “social interaction.” This problem is a central sociological issue: virtually all the influential theorists in sociology—Max Weber, Durkheim, Thomas, Mead, Parsons and Goffman, to name but a few—have grappled with the issue. Researchers, too, must often decide how to characterize and explain the interaction that takes place within groups, organizations and institutions.

Awareness Contexts

Our own approach to social interaction and awareness has been much influenced by our study of the situation of dying people. When a patient is brought to the hospital irrevocably comatose, and diagnosed as dying, then there is no question that he will ever become aware of that diagnosis. It is possible that nurses and physicians may define this patient’s status differently, but such disagreement is unlikely. On the other hand, when a patient arrives sentient, and there is some question about whether or not he is dying, then of course his definition may diverge sharply from theirs, and theirs vary among themselves. What each interacting person knows of the patient’s defined status,⁷ along with his recognition of the others’ awarenesses of his own definition—the total picture as a sociologist might construct it—we shall call an awareness context. It is the context within which these people interact while taking cognizance of it. Plainly, that context is complex, and it may change over time, especially as the patient’s condition worsens and as explicit or implicit messages on his condition get through to him.

If we assume that a number of persons are party to the interaction, then the logical combinations of who knows what yield a great many different types of awareness context.⁸ For Part II of this book, we have selected several that recur empirically—and are immensely important for “what goes on around the patient”—when only two interactants are assumed. Those two are the patient and the hospital staff. To simplify matters, we assume that the staff acts mainly as though all its members share the same awareness. For Part III, we do not make the assumption of staff consensus, but discuss what happens under various conditions of agreement and disagree...