On Death and Dying is one of the most important books ever written on the subject and is still considered the bench-mark in the care of the dying. It became an immediate bestseller, and Life magazine called it "a profound lesson for the living." This companion volume consists of the questions that are most frequently asked of Dr. Kübler-Ross and her compassionate answers. She discusses accepting the end of life, suicide, terminal illness, euthanasia, how to tell a patient he or she is critically ill, and how to deal with all the special difficulties surrounding death. Questions and Answers on Death and Dying is a vital resource for doctors, nurses, members of the clergy, social workers, and lay people dealing with death and dying.
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Elisabeth Kübler-Ross, MD, (1926–2004) was a Swiss-born psychiatrist, humanitarian, and co-founder of the hospice movement around the world. She was also the author of the groundbreaking book On Death and Dying, which first discussed the five stages of grief. Elisabeth authored twenty-four books in thirty-six languages and brought comfort to millions of people coping with their own deaths or the death of a loved one. Her greatest professional legacy includes teaching the practice of humane care for the dying and the importance of sharing unconditional love. Her work continues by the efforts of hundreds of organizations around the world, including The Elisabeth Kübler-Ross Foundation.
'On Death and Dying' is one of the most important books ever written on the subject and is still considered the benchmark in the care of the dying. This book is a vital resource for doctors, nurses, members of the clergy, social workers, and lay people dealing with death and dying.
Chapter 1
The Dying Patient
The dying patient has to pass through many stages in his struggle to come to grips with his illness and his ultimate death. He may deny the bad news for a while and continue to work "as if he were as well and strong as before." He may desperately visit one physician after the other in the hope that the diagnosis was not correct. He may wish to shield his family (or his family may want to shield him) from the truth.
Sooner or later he will have to face the grim reality, and he often reacts with an angry "why me" to his illness. If we learn to assist this angry patient rather than to judge him -- if we learn not to take his anguish as a personal insult -- he will then be able to pass to the third stage, the stage of bargaining. He may bargain with God for an extension of life, or he may promise good behavior and religious dedication if he is spared more suffering. He will try to "put his house in order" and "finish unfinished business" before he really admits, "This is happening to me."
In the depression stage he mourns past losses first and then begins to lose interest in the outside world. He reduces his interests in people and affairs, wishes to see fewer and fewer people and silently passes through preparatory grief. If he is allowed to grieve, if his life is not artificially prolonged and if his family has learned "to let go," he will be able to die with peace and in a stage of acceptance. (Examples of these stages are described in detail in my book, On Death and Dying, (Macmillan, 1969).
The following questions come from patients and relatives, physicians and nurses, and hopefully allow the reader to identify with the patient and to feel more comfortable when he or she is faced with a similar problem.
TELLING THE PATIENT
When is the time for an attending physician to tell his terminally ill patient of his diagnosis?
As soon as the diagnosis is confirmed a patient should be informed that he is seriously ill. He should then be given hope immediately, and by this I mean he should be told of all the treatment possibilities. We usually then wait until the patient asks for more details. If he asks for specifics I would give him an honest, straightforward answer. I do not tell the patient that he is dying or that he is terminally ill. I simply tell him that he is seriously ill and that we are trying to do everything humanly possible to help him to function as well as he can.
Whose responsibility is it to inform the patient of his terminal illness? The doctor or the minister?
The doctor has the priority, but he may delegate this job to the minister.
Should every patient be told that he is dying?
No patient should be told that he is dying. I do not encourage people to force patients to face their own death when they are not ready for it. Patients should be told that they are seriously ill. When they are ready to bring up the issue of death and dying, we should answer them, we should listen to them, and we should hear the questions, but you do not go around telling patients they are dying and depriving them of a glimpse of hope that they may need in order to live until they die.
What can be done when the doctor refuses to tell the patient about his terminal illness? Do you suggest that someone else tell the patient? If so, who? Can he or she do it even without the doctor's permission?
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No, you cannot do it without the doctor's permission. Unless the physician gives a minister or a nurse, or social worker the explicit request to do his job for him, it is inappropriate to do so unless you are the patient's next-of-kin.
When does the patient begin to die and when, then, does our relationship begin to be one with a dying patient?
In our interdisciplinary workshops on death and dying our relationships started with the hospitalization of the patients who had a potentially terminal illness. I believe, however, that such preparation should start much earlier and that we should teach our children and our young people to face the reality of death. They would then not have to go through all the stages when they are terminally ill and have so little time to deal with unfinished business. You live a different quality of life, as you do when you have faced your finiteness.
One situation which leaves me uncomfortable is when I know a patient has a terminal illness and the family of the patient has not been told. I think it is only lair to know if one is dying. Must we rely on the physician to tell them?
A patient has the right to be told how seriously ill he is and I believe that the family also has to be notified of the seriousness of an illness. It is the physician who has to relay this news to them. If the physician is unable to do so, the patient or the family should then approach other members of a helping profession and ask them. This is usually the chaplain, the priest, the rabbi, or the nurse. If another member of the helping profession is asked directly by the family or the patient, it is his duty to inform the physician of these needs, and, if necessary, ask that the job be delegated.
DIFFICULTIES IN COMMUNICATION
Do you suggest that doctors talk to a patient's family outside the sick room rather than when standing beside the bed of a comatose patient?
I try to teach my medical students, externs and interns, early that comatose patients are often able to hear and are quite aware of what is going on in the room. Since I am very much in favor of being open and honest with critically ill patients, I find no difficulty in the patient's hearing me share with the family the seriousness of the illness. If I have to share something with a family that I do not want the patient to hear, then I would naturally go outside the patient's room, preferably to a private office.
How do you cope with a family who refuses to allow any mention of "it" to their dying relatives?
I try to sit alone with the patient and then he will relate to me what he has not been able to relate to his own family. We then have to spend extra time sitting with the family separately and attempting to help them to deal with the situation which the patient has already faced.
I took care of a terminal cancer patient about two years ago who asked questions like, "How sick am I?"; "Am I going to get well?"; "What's wrong with me?"; "Why doesn't anyone tell me anything?" When l approached the attending physician regarding his patient's needs, he became very upset and asked me, "What do you want me to do, tell her she's going to die?" He had tears in his eyes when he said this. Would you care to comment on this kind of situation?
Yes, I think this is a very caring physician who obviously is involved and who obviously is bothered that this patient is not going to get well. I would express my empathy to him. I would tell him that it must be very hard to take care of patients like this. Then I would very gingerly ask him if it is all right if I talk with her. He may then give you permission to talk with her because he is apparently too upset to do it himself.
You've talked about talking about death, but what do you say, for example, if someone wants to know why he is dying? What do you say?
I tell him that I don't know, and ask him, "What are you really asking me?" The patient will then proceed to say he has worked all his life long, that he was just ready for retirement and why is it happening now. Or he will say, "My children are too young; they have not even started high school yet. If God would give me only a few more years to live to see my children grow up." If you sit there and listen, the patient will do most of the talking. All this will help him to express his feelings. You cannot go into a...
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