Synopsis :
Book by KblerRoss Elisabeth
Extrait:
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?
0
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 patient's room with a prepared statement of what you are going to say. You say what feels right at the moment and when you don't know what to say, you simply admit that fact, too.
How do you work with a patient who tells you about terrible pains and shows you the lumps?
I try to give him adequate pain relief first so he doesn't have to complain of terrible pains. If he shows me the lumps it means he wants to demonstrate how sick he is or how much he's suffering. He's obviously asking for empathy, which I try to give him.
In talking to a dying person with whom you've been close, are you supposed to be honest about your feelings of fear, loss, separation, i.e., stop playing games?
Yes.
What is the best stage to approach a patient about death?
You do not approach a patient about death. You wait until he brings up the topic of death and dying. If he talks about his pain, you talk about his pain. If he expresses a fear of death, you sit down and listen to him and ask what he is specifically afraid of. If he wants to make funeral arrangements or a last will long before he is close to dying, you don't try to talk him out of it but help him get a lawyer and put his house in order.
I am concerned about physicians who cannot answer questions in a straightforward way. When a patient asks if he has cancer and the doctor does not say no, there is only one option: "I do not know yet." A refusal to say one or the other will be interpreted by the patient as a tacit yes, and with no indication of how serious his condition is he may suspect he is in pretty terrible shape and this may hasten his demise.
I don't think it will hasten the patient's demise. It may give him some sleepless nights, it may make him worry and wonder, it may give him more anxieties, perhaps, but sooner or later he will again ask the physician a straightforward question. If he still does not receive an answer, he will try to find out through his family, his minister, nurse, or social worker about the true state of his health. Hopefully, one of his friends or a member of the hospital staff will then answer his questions.
My husband has emphysema and has been unable to work for the past four years. He is getting weaker but is still not quite house-bound. We both have our hang-ups; we are in our sixties and we have never talked about death and dying. Should we bring this topic up?
I think if you are already coming to a workshop on death and dying that implies to me that you are curious about it. You would like to help your husband and you have at least some questions about it. Why don't you go home and tell your husband about this workshop. If he changes the topic of conversation you will know that he is uncomfortable and doesn't want to talk about it. If he asks you any questions, you will be in the midst of a discussion on death and dying. You may then ask him if there is anything -- such as the matter of a last will or other things -- that might be easier to take care of now.
How do you deal with a fourteen-year-old who keeps saying she is going to die when she is eighteen years old? She is seriously ill.
I would listen to her and believe that she may know more than we do.
I have a client who is terminally ill. His wife had a heart attack recently and cannot be told the true nature of his problem yet. What is the best way of relating this to her?
I think a wife who has had a heart attack recently, and who knows that her husband is ill and unable to visit, will have more anxieties, more concerns, and will be more upset if nobody communicates with her about the nature of her husband's problems. I would sit with the wife, tell her that I just came from visiting the husband, and function as a messenger between the husband and wife, both of whom are hospitalized. I do not know if this couple is hospitalized in the same hospital; if they are they should preferably be together once the wife is out of the coronary care unit and in somewhat better condition. If not, they should be allowed to visit each other so that they can talk and at least share what they feel can be shared without unduly upsetting each other.
Can you say more about deciding where to put your help when the family and patient are present and the need of the family is greater?
You always help the ones who need the help the most.
How should you approach a person of whom you have no knowledge except the fact that he is dying?
You walk into the room, ask if he feels like talking for a few minutes and then you sit down and ask what it is that he needs most, and "Is there anything that I can do for you?" Sometimes they ask you to simply sit down and hold their hand; sometimes they wave you away because they want to be alone. Or you ask if there is anybody else you can get for them. That is very often what a patient needs -- a specific person whom he chooses. You then get that person and you have helped that patient. Sometimes when I feel like talking and I don't know the patient at all, I say, "Is it tough?" or "Do you feel like talking about it?" and in no time he talks about what really bothers him
How do you help parents accept the oncoming death of a nineteen-year-old son and speak about it with the son? Both realize death is coming, but don't verbalize together. Father and mother don't feel they can talk about it with the son.
Sometimes they need a catalyst, and this can be you. You can say to the parents, "Wouldn't it help if you expressed some of your concerns and feelings with your son? It may make it easier for him to complete some unfinished business between the three of you." If they are unable to do so, don't push, but at least share with them some of your clinical experiences. When this has been done, this may encourage them to open up.
How do you give a patient a clue that you will talk about death with him or her il he wants it?
I sit with him and talk about his illness, his pain, his hopes, and in a short time we are very often talking about our philosophies of life and death. Without any big preparations, we are in the midst of some real issues. Sometimes you can sit with a patient and ask him if he is willing to share with you what it is like to be so very ill. The patient will then talk about all the turmoil he has gone through and will perhaps add, "Sometimes I wonder if I would be better off to die." This gives you the opening to talk about what feelings, ideas, fears, and fantasies he has about death and dying
I am a member of a helping profession, and very often upon entering the room of the patient have very negative gut reactions. How do you suggest that I make contact with such patients? You said, "I share my feelings." I like that, but does that apply here when you have negative feelings?
Sometimes a patient makes you very angry and you feel like taking off. I feel quite comfortable telling a patient that sometimes his behavior irritates me, makes me angry, and maybe if we try to talk about it, we can find ways and solutions so that he does not alienate all the staff. If I'm open and flank about my reactions to him, the patient not only has a way of expressing his anger, but he knows I'm honest with him and he will be more flank and comfortable with me.
When learning how to communicate with patients about death and dying, is it always safe to verbalize your gut feelings to the patient? I say "safe" because I haven't identified my own feelings on death and dying and relating with other people and, therefore, I'm not sure how helpful my feelings would be to the patient.
It is not always safe to verbalize your own feelings. If you come into a patient's room and your gut reaction is, "I hope she doesn't die on me," you naturally don't share this wit...
Les informations fournies dans la section « A propos du livre » peuvent faire référence à une autre édition de ce titre.
