Why Is It So Hard to Die? Part 3

Death
by Elisabeth Kübler-Ross, M.D.

(Page 3 of 3)

Let us examine what this patient did. On one hand she was testing limits. She was saying, "What do you mean? When can I really turn on the signal light?" And secondly, she was scoring points by communicating: "I know you are busy. I appreciate you. I hope you'll appreciate me."

The patient continued in an interview: "You know what this young nurse did? She stopped what she was doing and she came right over to me. She placed her hand on my shoulder and she said that it was none of my concern whether they were busy or not. If I needed something, I should put on the light." If this nurse had continued to be Miss Efficiency of 1962, straightening out the bed and proceeding in her work, she would not have succeeded. To show the patient that if you need something, it's all right to put on the light, she communicated by stepping out of her role. She had the important skill of sensing when to be the official and when to use her informal self, a skill which we sometimes forget. This nurse utilized face-to-face relations, and she used touch.

Patients tend to have a sense of, "I'm entitled to a certain amount of care." This credit depends on the patient's opinion of how sick he is. Less that five percent of the patient population in our study related that claim to service was related to money paid for it. All others indicated consistently that they are entitled to service based on how sick they are.

How do I know how sick I am? The physician does not tell me. The nurses do not tell me. I do not really know. This results in finding ways of determining my service eligibility — of locating the size of my service bank account. The key indicator of the claim to service seems to be the visibility of the claim.

Most visible is the claim of the patient totally strapped to a support frame. He may be scared for his life, concerned about his recovery, but, at least, he has no concerns about his inmate role. Everyone coming in, whether it is a nurse or an aide or a physician, will know that it is legitimate for him to ask for orange juice, water, the urinal, whatever it is. Every drainage bottle, every fluid hanging beside the bed is an increment of the amount of credit. I am not suggesting that the physician order all kinds of bottles just to give patients security. But awareness of the patient's viewpoint is important. This was brought home to me by a patient after a heart attack who before his discharge said, "I never thought that I would ever envy an amputee." I was almost shocked. The patient explained, "When I go home, my doctor will probably tell me that I shouldn't walk up stairs." At that time downtown Chicago had many operator-guided elevators in business buildings with signs which said, "Walk up one flight, walk down two." The patient continued, "If an amputee goes into the elevator, and says 'second floor,' the operator will see the prosthesis and will take him up. What will happen to me? I have no way of legitimizing my going in and asking to be taken up to the second floor. I either have to reveal myself and go through an explanation or I have to walk up. What do you think I'll do? I'll walk up." The peculiar consequence of invisibility of certain conditions becomes a very crucial thing.

The second criterion patients tend to identify is fever. If anyone wants to do a study of the hospital and its status system, one has to consider the caste line between those with temperature and those without. There are rules which indicate that the patient may not be told what his temperature is. Yet, in not telling him how sick he is, we are also not giving him cues to his rights, because as the temperature rises so does the bank account of entitlement to services.

The third thing is pain. It is not as good as visible things because it has to be believed. The patient tries to establish the criteria which determine how much he can ask for. And he gropes for means of organizing his demands. If he can voice demands which the staff seem to approve, then less of his credit is reduced. If he happens to choose a request which appears to meet staff disapproval, then it costs him more.

The patient with an ulcer has been told by his doctor that he should not get upset, that he should not get excited. If he wants something he should ask for it. And he also knows that he is not going to die. Thus he is more likely to ask for things. He is more likely to risk his credit balance than the cardiac patients who say: "I am here without being convinced that everyone knows that I am entitled to complete attention. How do I know when the the nurse's aide comes and does things for me that she agrees that I am entitled to it?" This patient has no visible signs of disability and he also knows that a heart attack can come again. And if it comes, he will need his entire bank account, because speed and good will are crucial, and so he will not try to drain much from his account. If I would give advice to physicians and to nurses, it would be, "Anticipate the need of cardiac patients more than of any other patients."

When we look at the patient's needs and the patient's perception of his own role, we see the patient asking to be told what his rights are so he can understand them better; what rewards and what punishments are in store for him. He would like to be known as an individual and not as number seven hundred thirty-two. He would like to be assured that what is given to him is safe. Happy is the patient who happens to be prescribed a drug that has some psychedelic color scheme, because when it is given to him, at least he knows, "This is my drug." But woe to the patient who receives the indistinguishable white pill. He dares not ask because the nurses would be very stern with him if he does. And yet he's expected to trust the staff that he receives what is intended for him.

This climate of dependence on staff and on the institution drains the patient's sense of uniqueness and of human worth. In this environment it is possible to present one of my organs for repair, but it is much more difficult to cope with the fact that I am dying. The care I need stems from people's ability to use themselves as deliberate and delicate instruments of help; my organs, however, can respond to the technology and chemistry of medical science.

In summarizing, from the institutional view of the dying process it becomes clear that there are two fundamental issues before us. One is the range of skills, attitudes, and behaviors of the health professions whom we educate to respond to human needs. The other is the organization of a complex social system which we have created to organize these skills and to make available the technological resources of the therapeutic and diagnostic arts. The hospital, it has been suggested, is indeed an institution which has responded admirably to the challenge of healing. It has made possible the division of labor, it has routinized emergencies; but in doing so, it has paid a price and it has reduced, for the sake of human efficiency, the conditions of dignity and of individuality which are part of the human requirement of those who are well, of those who are ill, and of those who are dying.

We have suggested that our professionals have learned to become experts in the management of technological instruments and tools. We have also suggested that in emphasizing instruments and techniques we have diminished their sensitivity and their commitment to their own resources and to their internal strengths. We have not assisted their recognition that being a professional can be as much a helping process as doing the things that professionals do.

I am reminded of an analogy that I should like to offer in conclusion. In our society we have seen the development of the super highway, the interstate network of ribbons of cement which cuts across our country and efficiently and speedily links distant parts of our country with each other. The technological capability of constructing these highways represents the development of maximum efficiency and maximum control over nature by doing away with hills, by filling in valleys, and by bridging streams. When you drive on super highways, you become aware that you have indeed made a choice, and the choice involves gained efficiency of movement, but you have paid the price of feeling that the natural environment has become distant and separated from your immediate proximity. You have paid a price which may have been appropriate. There are times, however, when the experience, the enjoyment, and the need to understand your environment require you to take the sideroad and to seek to commune with nature. The narrow road on which you then choose to travel might appear as a mere reluctant intrusion into the integrity of the world which you seek to understand. This, in a very real way, is the picture of modern patient care. Our hospitals and our health professions have built super highways of medical technology in which the patients' diseases and their organs loom large and where we focus with efficient specificity upon the disease process which we seek to cure. Patient care, however, writes its own script and the dying patient is but one extreme example of the time when the professional challenge demands that we abandon the comfortable road of predictable mileage and dare to venture into the narrow byways which adapt themselves to the individuality of the real world — in this case to the specific needs and human processes of the patient who has entrusted himself to the care of people who could most effectively use themselves as the instruments of help and of hope.

Death in the First Person

Anonymous

In the selection you have just read, Dr. Mauksch asks for a change in hospital orientation and procedure to accomodate to the human needs for hope, reassurance, and support from those who care for dying patients. It is unlikely that we wilt soon see any policy decisions on an institutional level that will incorporate rinse prescriptions into the expected role of professionals on a hospital staff. But it does not require a policy decision for individuals to change their behavior. As this young nurse says so eloquently, it doesn't take any more time than you already spend; it's just a matter of also using that time to minister to the patient's needs as a human being with hopes and fears and questions and needs for meaningful contact with other human beings. This piece was published in February, 1970. Its author may have been dead for several years now. She gave meaning to her lift and death through her reaching out to others with a message that would carry on long alter she was gone. You can further dignify her death if you will receive and act upon this message.

I am a student nurse. I am dying. I write this to you who are, and will become, nurses in the hope that by my sharing my feelings with you, you may someday be better able to help those who share my experience.

I'm out of the hospital now — perhaps for a month, for six months, perhaps for a year — but no one likes to talk about such things. In fact, no one likes to talk about much at all. Nursing must be advancing, but I wish it would hurry. We're taught not to be overly cheery now, to omit the "Everything's fine" routine, and we have done pretty well. But now one is left in a lonely silent void. With the protective "fine, fine" gone, the staff is left with only their own vulnerability and fear. The dying patient is not yet seen as a person and thus cannot be communicated with as such. He is a symbol of what every human fears and what we each know, at least academically, that we too must someday face. What did they say in psychiatric nursing about meeting pathology with pathology to the detriment of both patient and nurse? And there was a lot about knowing one's own feelings before you could help another with his. How true.

But for me, fear is today and dying is now. You slip in and out of my room, give me medications and check my blood pressure. Is it because I am a student nurse, myself, or just a human being, that I sense your fright? And your fears enhance mine. Why are you afraid? I am the one who is dying!

I know you feel insecure, don't know what to say, don't know what to do. But please believe me, if you care, you can't go wrong. Just admit that you care. That is really for what we search. We may ask for why's and wherefore's, but we don't really expect answers. Don't run away — wait — all I want to know is that there will be someone to hold my hand when I need it. I am afraid. Death may get to be a routine to you, but it is new to me. You may not see me as unique, but I've never died before. To me, once is pretty unique!

You whisper about my youth, but when one is dying, is he really so young anymore? I have lots I wish we could talk about. It really would not take much more of your time because you are in here quite a bit anyway.

If only we could be honest, both admit of our fears, touch one another. If you really care, would you lose so much of your valuable professionalism if you even cried with me? Just person to person? Then, it might not be so hard to die — in a hospital — with friends close by.

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.