Why Is It So Hard to Die? Part 2

Death
by Elisabeth Kübler-Ross, M.D.

(Page 2 of 3)

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 co-conspirators who must assume shared responsibility.

To add to this point let me suggest that the entire process of admission continues to demonstrate this dependency. Everything that the patient carries has to be surrendered upon admission, This includes even the medications which his own physician has prescribed, has issued, and has trusted the patient to take on his own. These drugs cannot be given again until a new order has been written by the same physician or by someone else. On many occasions time has passed for the next dosage of the medication which stands at the nurse's desk in the patient's own container. But the time passes because no new order has yet been written. This is not only a direct conflict between professional and bureaucratic principles, in which the bureaucratic principles prevail. More importantly, it is a reminder to the patient that the patient's relationship to his or her private physician has been severed and that the hospital as an anonymous agency has become the interloper, the power-wielder, which can withhold from the patient even the drugs prescribed by the patient's own physician. "Is my doctor's word not good anymore? These are the pills that he prescribed for me. Whir don't they give them to me? After all, my doctor's name is on the bottle." This undermines not only the confidence in the physician, but it undermines any sense of autonomy which the patient may have left.

Admission also may involve retaking of all those procedures which have previously been undertaken in the physician's office — X-ray, weighing, checking, laboratory tests. If they have been done outside the hospital, they do not count. Bureaucracy will prevail here, too. To quote one patient, "I can accept that they don't trust me, but they don't even seem to trust my doctor."

All of this shapes for the patient two objectives for the hospital stay. The patient arrives in the hospital with the desire and the objective to get well. The new role that is emerging is that "I must survive in the hospital. These are all very powerful people. I must keep myself in good standing in order to get care." This second role aspect competes at times with the objective of getting care. If I have pain and I need something and I know that the nurse might get angry if I turn on that light too frequently, I see myself caught in a power system. One heart patient cradling the signal cord said, "I am saving this button. They appreciate that out there. They know that if I push that button I will really need them fast. They appreciate not having that button used too much."

All of these experiences indicate that patients learn that they must survive effectively within the hospital. In order to do that, they have to find out what the rules of the game seem to be. In schools, students tell each other what they can get away with, what the limits are. Everyone who has ever been with children, as babysitter, knows that the first thing the toddler does with a new sitter is to test the limits. The hospitalized patient also seeks to find out what the rewards and what the punishments are for the behavior within the hospital. However, it is more difficult for the patient to find out, because the rules are not clear, status definitions vary, and there is no informal community of patients. Many a physician and nurse have no idea that their day-to-day behavior with every patient implies rewards and punishments and that they appear to the patient as power figures from the first day that they appear on the patient care unit as students.

Some modern aspects of team nursing need to be looked at from the point of view of patient responses and patient indications. Waiting is punishment. To anticipate the patient's needs is reward. To act as if I do not understand what the patient wants is punishment. The physician who sits down, rewards. The physician who stays far away from the bed, punishes. We asked several physicians to come in and we actually kept track of the time. We asked them to stay in the patient's room for exactly three minutes. Four physicians worked with us on this. With half of the patients, they sat down randomly, and with the other half of the patients, they remained standing a little bit removed from the bed. We then interviewed these patients. Every one of the patients where the physician had sat down thought the physician had stayed at least ten minutes. None of the ones where the physicians remained standing estimated that it was as long.

I recall a fifty-eight year old woman who had been admitted with a cardiac problem, and we interviewed her the next day. The patient said, "You know, when I was admitted, a nurse helped me into my gown. I was sitting down as she was making the bed; she was fastening the signal cord to the pillow, and she told me that if I needed something I should just push the button and the light would go on, and a nurse would come in." This woman smiled at me and continued: "Well, I know how busy these nurses are, so I told her that I hoped I would not have to bother them very much."

Copyright © 1975 by Elisabeth Kübler-Ross

About the Author

Elisabeth Kübler-Ross earned a place as the best-loved and most-respected authority on the subjects of death and dying. Through her many books, as well as her years working with terminally ill children, AIDS patients, and the elderly, Elisabeth Kübler-Ross brought comfort and understanding to millions coping with their own deaths or the death of a loved one. Dr. Kübler-Ross, whose books have been translated into twenty-seven languages, passed away in 2004 at the age of seventy-eight. Before her death, she and David Kessler completed work on their second collaboration, On Grief and Grieving.