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Chapter 2

Why Is It So Hard to Die?

Dying is an integral part of life, as natural and predictable as being born. But whereas birth is cause for celebration, death has become a dreaded and unspeakable issue to be avoided by every means possible in our modern society. Perhaps it is that death reminds us of our human vulnerability in spite of all our technological advances. We may be able to delay it, but we cannot escape it. We, no less than other, nonrational animals, are destined to die at the end of our lives. And death strikes indiscriminately — it cares not at all for the status or position of the ones it chooses; everyone must die, whether rich or poor, famous or unknown. Even good deeds will not excuse their doers from the sentence of death; the good die as often as the bad. It is perhaps this inevitable and unpredictable quality that makes death so frightening to many people. Especially those who put a high value on being in control of their own existence are offended by the thought that they, too, are subject to the forces of death.

But other societies have learned to cope better with the reality of death than we seem to have done. It is unlikely that any group has ever welcomed death's intrusion on life, but there are others who have successfully integrated the expectation of death into their understanding of life. Why is it so hard for us to do this? The answer may lie in the question. It is difficult to accept death in this society because it is unfamiliar. In spite of the fact that it happens all the time, we never see it. When a person dies in a hospital, he is quickly whisked away; a magical disappearing act does away with the evidencebefore it could upset anyone. But, as you will read later in various contexts, being part of the dying process, the death, and the burial, including seeing and perhaps interacting with the body, is an important part of coming to grips with death — that of the person who has died and your own.

We routinely shelter children from death and dying, thinking we are protecting them from harm. But it is clear that we do them a disservice by depriving them of the experience. By making death and dying a taboo subject and keeping children away from people who are dying or who have died, we create fear that need not be there. When a person dies, we "help" their loved ones by doing things for them, being cheerful, and fixing up the body so it looks "natural." Again, our "help" is not helpful; it is destructive. When someone dies, it is important that those close to him participate in the process; it will help them in their grief, and it will help them face their own death more easily.

It is hard to die, and it will always be so, even when we have learned to accept death as an integral part of life, because dying means giving up life on this earth. But if we can learn to view death from a different perspective, to reintroduce it into our lives so that it comes not as a dreaded stranger but as an expected companion to our life, then we can also learn to live our lives with meaning — with full appreciation of our finiteness, of the limits on our time here. I hope that this book will help you understand death and dying better and will make it a little less hard for you to die and a little easier for you to live.

Most people in our society die in a hospital. This, in itself, is one of the primary reasons that dying is so hard. The first selection of this chapter explores, from a sociological point of view, the hospital ?as a depersonalizing institution which is not, by definition, set up to meet the human needs of people whose physiological condition is beyond the hospital's capability for successful intervention; these patients represent a failure of the institution in its life-sustaining role, and there is nothing in the system that provides for human nurturance to the soul when the body is beyond repair. The other selection is a moving poem by a young student-nurse who is dying. Having spent time in the hospital as a practitioner and now as a patient, she issues a plea to those who minister to the sick and dying to step away from their professional roles and reach out as human beings to those who need them.

The Organizational Context of Dying

Hans O. Mauksch, Ph.D.

In our modern technological society, dying is something you do in a hospital. But hospitals art efficient, impersonalized institutions where it is very difficult to live with dignity — where there is no time and place in the routine to deal with the human needs of sick human beings. In the following selection, Dr. Mauksch explains why it is that hospitals, by definition, are rarely responsive to the special needs of people who are dying. Hospitals are institutions committed to the healing process, and dying patients are a threat to that defined role. The professionals in hospitals have specified expectations and routines to carry out; these simply don't these simply don't work with dying patients. This is a threat to the professionals' roles and creates feelings of inadequacy which are inconsistent with their defines roles as people who can deal effectively with disease. There is no room in the prescribed roles of professionals for them to behave as human beings in response to their dying patients. The history and reasons for the kinds of constraints that exist in the hospital organization are explored by Dr. Mauksch, and he proposes that this need not be so. I think you will find this perspective on the hospital setting (for all people, whether they are dying or not) a very valuable one.

The predominant number of deaths these days occur within the hospital, the institution created by society to support the healing services. Actually, to be historically correct, there was a period in the early phases of the development of this institution when the hospital, indeed, was the institution for people who were either poor and indigent or who were dying. As the science and technology of medicine and of the other health professions have experienced the dramatic growth and development which characterizes the health field in the twentieth century, the whole flavor, aura, culture, and social organization of the hospital has shifted from an institution devoted to charity and to those who die to an institution which is fundamentally committed to healing, to curing, to restoring, and to the recovery process.

In a differentiated society like our modern, highly complex one, we tend to endow the occupants of social roles and institutions with mandates which denotate their purpose, their function, and their values. The current roles of the health professions have emerged through their own achievements and through the growth of social expectations. In the midst of the current technological emphasis on the success story of healing, the patient whose disease cannot be cured, the human being who is dying is inexorably perceived to be a failure to the health professions — a failure of the mandate given to the professionals and to the institutions. The organizational context of dying within the hospital must be understood as an institutional response to an event which today is identified as a failure, although it also remains a reminder of the limits of medical knowledge and capabilities.

A second, more subtle dimension of the organizational context of dying is the different focus required by the needs of the dying patient compared to the needs of the patient whose illness is about to be cured. As a social scientist within the medical setting, I seek to remind physicians and other health professionals that the human being who happens to be ill is indeed an integral part of the disease process and that his or her interactions are crucial to the cure, the care, and the future life of the patient. In the case of the dying patient, the current culture of the hospital, which emphasizes the disease process and the diseased organ, is counterproductive to the needs of the dying patient. Dying is a total experience, and at the point of dying, the diseased organ ceases to be the primary issue.

There is a third dimension to the climate of dying. In his book Passing On: The Social Organization of Dying, David Sudnow suggests that physicians and nurses, in their behavior and in their attitudes, demonstrate a sense of discomfort and a sense of guilt when facing human beings who, entrusted to their care, terminate their lives in the face of all efforts. Those of us who are committed to recovery, to healing, to cure cannot avoid, within the context of the hospital culture, sensing that we have failed when one of our patients dies. There are several ways in which this sense of guilt, this sense of failure can be understood. It suggests the search for whether everything had been done, whether there were other kinds of resources that could have been invoked, whether all diagnostic and therapeutic means had been employed.

There is a second way in which one can look at this particular issue. There is a mixture of reality and myth in the belief in the continuous growth and expansion of medical knowledge. I have interviewed a number of physicians who, in the face of the death of a patient, raised the question, "Is there someone else, somewhere, who has new knowledge that could have made the difference?" The sense in which every physician feels responsible for the total state of current medical knowledge apparently varies from physician to physician and hospital setting to hospital setting, but it is an important potential cause for the discomfort of the physician and for possible blocks in the relationship between physician and patient.

There is the third haunting possibility that I, the physician, or I, the nurse, may have made a mistake, may have committed an error which contributed to the patient's death. Somewhere within the hospital culture lurks the awesome expectation that, while all other human beings are permitted to make mistakes and to commit errors, physician's and nurses must not. Indeed, the facts suggest that these clouds of possible errors have only limited basis in fact. A number of studies have shown that relatively few errors occur, although when they do they tend to be dramatic. When errors occur they tend to make the rounds of hospital gossip and, sometimes, even make the national press. In a study conducted by me. I found that among 240 so-called "Incident Reports" in an 800-bed hospital over a three months' period, only two of these so-called incidents involved situations in which the patients were physically affected and actually endangered by the error committed.

In order to appreciate the way in which the dying patient fits within the total system of the hospital, we have to recognize that the hospital represents an institution which, in a sometimes misunderstood and sometimes misused way, has to routinize the emergencies of its clients and their varied individual needs. At the same time the hospital is a place which houses a network of different occupations which, although ideally complementary, tend to have inadequate communications and are isolated when they should communicate. In the midst of all this, the dying patient represents a series of human events where the needs of the client cease to be translatable into routines and rituals. It is in this fundamental sense that the dying patient threatens the hospital and its personnel. The routine orders, the predictable activities, when applied to the dying patient, cease to be meaningful, cease to be effective, and, above all, cease to be satisfying either to the people doing them or to the patients who receive them.

It is interesting to note that the hospital and its culture considers death in some way one of its own taboos. In the hospital patients do not die, they expire. Patients do not die in the operating room; rather, the patient is "lost on the table." The language of the hospital suggests that denial, the first of the stages described by Dr. Elisabeth Kübler-Ross, is also the first and frequently the continuously defended stance of the institution and its personnel. The hospital and its personnel tend to reward the patient for maintaining the denial phase because it protects the hospital personnel from becoming involved and from facing their own feelings. It also protects them from having to communicate with each other, with the patient, or with the patient's family.

This type of appreciation was expressed by a head nurse whom I interviewed shortly after a patient had committed suicide on her ward. This head nurse said with much feeling, "You know, Mrs. X was such a cooperative patient. We all liked her very much." She thought for a moment, she was quiet, and there were tears in her eyes; and then this nurse turned to me again and said, "Do you know how cooperative she really was? She even committed suicide exactly at three o'clock, so that neither shift would have to be responsible for the consequences."

It is important to recognize that when Dr. Ross speaks of the needs of the patient working through the stage of anger that the hospital as an institution is not designed to absorb and to cope with the patient's anger. Patients are made to feel dependent on their physicians and nurses, are made to feel that they should be grateful for the care that they are given by these "marvelous people." Indeed, this is a feeling shared widely by patients and one that physicians and nurses have become accustomed to expect. Therefore, the patient who tries to express anger does not only communicate a personal need, does not only cry for help, but indeed violates the culture, the rules, the expectations of the institution and thereby threatens the system. Only when physicians and nurses have been taught to view the behavior of their patients as significant symptoms of unique human needs and when they feel it is an integral part of their professional capability and responsibility to respond to these needs, only then will physicians and nurses be able to cope with patients' anger without feeling personally offended and institutionally attacked.

The same comments can be made about the bargaining patient. The hospital professionals are the ones who determine what is good for the patient and they are the ones who know how much this patient can achieve, how much this patient can do, and even know at what rate the patient's disease ought to progress.

The grieving patient — the fourth stage outlined by Dr. Ross — causes guilt and other discomforts. We live in a society in which control of emotions and the display of proper behavior are highly rewarded. We also live in a society in which joining a profession is associated with something called "professional behavior." In either case, the showing of emotions, the sharing of feelings, and, particularly, the showing of such personal indicators as tears are taboos in our society, particularly for professionals and especially for males. The grieving patient, the patient who cries, not only makes us feel guilty, but he also makes us feel scared about our own ability to sustain a relationship without losing the mask identified with a professional stance. In interviews with physicians and with nurses, the fear of crying, the fear of showing compassion, is tragically a block to the display of some of the genuine concern which is present among many who, in their own frustration, have felt conflict between their concern and the mask that they felt they must wear.

The setting of the hospital and the relationship between health professions has been discussed in many publications and has been subject to comment, criticism, and analysis from many quarters. There is one important issue that directly relates to the dying patient. The technical appropriateness which underlies the logic of the division of labor within the hospital ceases to be meaningful in meeting the needs of the dying patient. I should like to suggest the notion of the "transprofessional" domain. Certain skills and certain roles are professional in nature. They involve responsibility, the assumption of deliberate relationships, and the utilization of identifiable skills. However, the transprofessional domain is one which is not owned by any one profession and which is open to and appropriate for any of the available functionaries. The relationship with the dying patient; the privilege of helping the human being who is dying to work through to the stage of acceptance and to help his or her family is something that ought to be the capability of any of the professionals involved in the care of the person in need. Conversely, not everyone dealing with sick and dying people needs to have developed this skill fully. Thus, I am suggesting a type of teamwork, a type of utilization of appropriate human resources which is different from the typical hospital setting. Actually, at times, the attending physician may not be the best person to help the patient to find comfort and peace. After all, many patients feel that in dying they let their own physician down and many physicians, as mentioned earlier, feel uncomfortable about the death of their own patients. The utilization of human resources by calling in those who may be acceptable and appropriate to the patient invokes atypical behavior patterns within the hospital.

A word needs to be said about the clergy. In the hospital, the clergy have only recently regained some meaning, some entry, and some role. The clergy deserve a significant place not only in helping the dying patient but in serving as a resource to the patient's family and, hopefully, to the physician or to other health professionals who are troubled by the burden placed on their shoulders.

It may seem like a facetious point, but it is worth contemplating that the mandate of the clergy contains a safety valve which can help them to perform the functions of assisting the dying person, Clergy are, in all faiths, the spokesmen or the representatives of a higher power. As they may seek to help and to offer support, it is within the context of personal imperfection and lack of complete authority. By contrast, medicine has been given by our society the aura of having the final authority in dealing with health, illness, and life.

My remarks should not be taken as a criticism of the physician but as a comment on the society which has cast onto the shoulders of the physician something which he or she cannot handle without facing difficult moments. The sharp conflict between mandate and reality has been aggravated by the scientific developments which have lured the physician into the laboratory of biochemistry or physiology and which have given him an aura of laboratory-type control over biological processes. In that process, the peculiar imperfection and lack of finality that goes with the human process have been lost from his own culture and certainly from his own curriculum.

'Sudnow distinguishes between two ways of looking at death. There are those deaths which are expected and which are part of the anticipated events of a given hospital unit, and then there are those deaths which could not have been predicted, which occurred in settings within the hospital where death is an exception and a rarity. They "simply should not have occurred." The following quotation from Sudnow's book shows how, on a busy ward with severely ill patients, the staff has developed a way of dealing with death.

A: Hi Sue, bet you're ready to go home.

B: You ain't just kiddin' — it's been a busy one.

A: What's new?

B: Nothin' much. Oh yes, Mrs. Wilkins, poor soul, died this morning, just after I got here.

A: I didn't think she'd make it that long. Do we have a full house?

B: Just about. Number two's empty, and seven I think.

A: Mrs. Jones die?

B: I think so, let me see. (Looks at charts.) Guess so. (Turns to other nurse.) Did Mrs. Jones die today?

C: She was dead before I got in to work this morning, must have died during the night.

A: Poor dear. I hardly knew her but she looked like a nice old lady.

A: You look tired.

B: I am. Lucky you, it's all yours.

A: I hope it's a quiet night. I'm not too enthusiastic.

B: They all died during the day today, lucky us, so you'll probably have it nice and easy.

A: So I saw. Looks like three, four, and five are empty.

B: Can you believe it, we had five deaths in the last twelve hours.

A: How lovely.

B: Well, see you tomorrow night. Have fun.

This quotation can be interpreted in many ways. It does show the staff's need to routinize and organize its activities. It shows the degree to which the differential experiences of a number of people who have died have become part of a routine report. The quotation does not entirely reveal the degree to which these nurses either served as helping agents or protected themselves so that they would not get too involved with these patients.

A death on an obstetric ward, where deaths do not normally occur, is a very different experience. I recall the death of a patient who up to the moment of crisis was expected to have a normal child and a normal delivery. A sudden complication resulted in a very rapid death. The physicians, the nurses, and all other personnel were terribly upset. The unspoken fear of the possible mistake or the possible error was all too obvious within the ward. Two of the nurses broke into tears, which caused the physician to become even more upset and angry, since, after all, people in a hospital are not supposed to cry. The unanticipated death not only upset everyone and created an aura of guilt and failure, but it tended to serve as a conflict-creating event among the people involved in the care of this patient. Communications diminished and it was obvious that following the death of that patient nobody trusted anyone else. The ability to communicate was lost when this crisis occurred.

All this leads to one important issue. Dr. Ross, in her description of the patient's needs and the patient's movement through various stages offers a direct challenge to the health professions and to the educational processes by which we introduce our novices into these professions. I have genuine faith that the technological resources, the organizational complexities, and the power of our scientific capability to cure are not incompatible with the skills and the behaviors which are required to help the dying patient. On the contrary, I believe that the technology of care and cure should enable us to free professionals for giving more deliberate and careful attention to using themselves as instruments of help and of support.

These thoughts require changes in the current climate and structure of medical and nursing curricula. They require changes in the culture of our training institutions. It is an old caveat that the content of the curriculum will not be as influential as the climate within which the curriculum is taught. When we educate people to take care of other human beings, our educational process must convey that we respect those whom we teach so that they may respect their own clients. We must shift from procedure-oriented patient care to patient-oriented procedures. We must shift from the development of merely technically competent practitioners to professionals who see themselves as having the capability to deal with their own feelings and to use them in a deliberate and humanly sophisticated way.

The important thing about the special topic of care of the dying is that it cannot be a skill that is turned on and turned off only when we confront a person during these terminal stages. The skills, the relationships, the attitudes, and the behaviors which are implicit in these needs must be fundamental to the total network of relationships with all patients. This applies to clients whether they are seriously ill or whether they are recovering and are about to return to healthy functions in society. The entire network of relationships with patients is subject to much more deliberate concerns, improvements, and possible impact than is frequently allowed in the medical curriculum or in the day-to-day practices of patient care.

In a study conducted to determine the patient's view of the patient role, we sought to explore the patient's perception of this relationship and of their own place in the hospital. It involved in-depth interviews with approximately ninety patients and usually several interviews with the same patient.

I am reminded of the very beginning of our research when we sought permission from attending physicians to interview patients who were severely ill, particularly patients shortly after a myocardial infarction. We were met with indignation and with the question, "How dare you bother such sick patients?" We finally found a physician who gave us permission to try.

These interviews were undertaken with some degree of trepidation. It took some time before we discovered that the fear of catastrophe was rarely, cause for real concern. I should hasten to add that the kind of interviews we conducted were, of course, cautious, open-ended, and were conducted to Permit the patient to talk about what they were ready to talk about. In many instances, severely ill patients welcomed us and thanked us because it seemed to diminish their own tensions to have the chance to talk and to have someone there who intently listened and showed interest and concern.

We chose to limit our study to patients with gastrointestinal and cardiovascular diseases. Among other things, we wanted to find out whether these two conditions made a difference in the way patients perceived their roles.

In interviewing patients and in analyzing our data, we concluded that in some way the patient in the hospital is made more dependent on the institution than either the inmate in prison, the student in school, or the new employee in an industry. Erving Goffman, the well-known sociologist, speaks of the "stripping process" by which he describes the incorporation of persons into those institutions which embrace the individual totally and which provide procedures and rituals which strip the person of his :autonomy, identity, and his distinguishable separate status. This applies to the military service, it applies, to the convent, it applies to the mental hospital, but it also applies to the patient in the general hospital, at least to a significant degree.

In the modern hospital, the patient is frequently admitted to a private or semi-private room. The nature of the hospital, its architecture, design, and procedures all tend to discourage the patient from forming a patient community and an interaction system with other patients. Not being able to form informal groupings with peers who help to interpret the institution diminishes the power of the client. Shared informal rules and expectations help clients to share experiences and modes of coping. Through informal communications, patients seek to determine which behaviors are likely to be rewarded and which are likely to be sanctioned by the functionaries of the institutions.

For purposes of dramatizing the process by which the diminishing of the personal autonomy and identity takes place, let us assume that I had been in the office of my private physician two days ago. He confirmed the prescription which I had been taking for some time now. He had his technician do a variety of laboratory tests including urinalysis, examination of a blood sample and various other kinds of diagnostic tests. Yesterday, I was informed that some of the tests' results warranted admittance to the hospital for further work-up. His office had made the reservations for me, and I was asked to report to the hospital at three-thirty this afternoon. Let us now go through my experiences.

Much has been written about the fact that when one arrives at the admissions desk of the hospital, waiting is the order of the day. Waiting in itself can be an expression of power by the institution which makes you wait. The filling out of forms, although necessary, can add to the climate of personal surrender. Time, of course, has different meanings in different cultures. In Latin America, the length of waiting time might have a very different meaning than it does in Anglo-Saxon countries. Time has a different meaning in different portions of the United States and different meanings in rural or urban settings. Whatever that may be, the experiences of waiting at some point become a communication. The medical profession, the hospital, and other health professions have been successful in conveying to the public that waiting in the hospital, waiting in the physician,s office is almost an expected norm and is the price we pay for the privilege of obtaining health services.

My comments are not meant to imply criticism of the procedures themselves but rather to suggest that procedures, although necessary, have psychological by-products and tend to imply a world of meaning which we must take into account to recognize what happens to human beings who become patients. It is obviously necessary that we identify patients and that we protect patients from errors in medication. However, placing the little plastic band on the arm of the patient as part of the admitting process is an expression of property fights and, in a way, is like branding cattle on behalf of the owner. It means that "we now take possession of you."

A messenger takes us to our room. Once we are admitted to the hospital, we may not walk unescorted even though we may be physically very able to do so and even though we may know the institution extremely well.

Once admitted to your assigned room, the stripping process continues. It now involves a shedding of clothing. I recall the horror with which a young nurse who happened to have been one of my students looked at me when I informed her that I wanted to remain dressed. I had been admitted for elective surgery, and I knew that there was not much else scheduled for me. I wanted to finish a report which my secretary was to pick up from my room later on. When she asked, "Do you want to wear your own pajamas or would you like a hospital gown?" I said that I would just remain dressed for awhile longer. This young woman became very uncomfortable because, after all, I was an authority figure and she had known me as one of her teachers. I was creating a terrible dilemma because, after all, patients have to take their clothes off so that the hospital can deal with them. And so she did what I have before and since seen nurses do many times. She referred to the fact that the physician might come at any minute and, after all, we would not want to interfere with the physician's work by not being ready for him. The use of one of the other professionals by any of the professionals is a very risky business in offering the patient a sense of teamwork, a sense of confidence, and a sense of inter-professional communications. In order to avoid creating stress, I took my clothes off to make the staff comfortable.

The psychological literature indicates that illness frequently is accompanied by regressive behavior. This is quite correct. However, as a sociologist, I have to raise a word of caution. If we only use this psychological model, it implies that those who care for the sick person stand by his side and merely tolerate the patient's symptoms and hope that the patient will return to mature behavior upon recovery. However, sociologists find that the dependency behavior which patients manifest is no less than a realistic response w the social situation in which they are placed and in which all health professionals are c