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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 identifywith 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?
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?
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 with a patient. If your gut reaction is one of insecurity and helplessness and yet you would truly like to help this patient, it would be "very safe" to tell the patient, "I am not sure how I can help you though I would like to. Is there anything specific I can do for you that would make you more comfortable?" I quite often tell my patients that I feel somewhat helpless or at a loss for words and sit down waiting for a cue from the patient to help me out. These patients then become very comfortable with me because they are able to share their own feelings of ambivalence, of insecurity, and, sometimes, of helplessness with me. Together we try to find solutions.
To what extent is it possible or desirable to talk with a cardiac patient about the seriousness of his heart attack? One does not want to frighten the patient so much that he has another attack which then brings on death.
This fear of talking with cardiac patients about the seriousness of their coronaries is our problem and not realistic. A patient is very aware when he has had a serious heart attack. He should be informed about the seriousness in order to take his diet, his exercise, and his posthospital care seriously. A patient is much more frightened, much more anxious, and much more prone to difficulties if you are not honest with him. He may continue to eat excessively or be so intimidated by the whole experience that he does not dare to exercise at all, which may result in another coronary. We talk openly and frankly with our cardiac patients. We tell them how serious the attack was and at the same time we give them information as to their limits of functioning, encouraging them to follow through with their exercises in order to have a better prognosis.
Since you do not believe in telling a patient a concrete number of months or years of life expectancy, would you agree that it is good to tell him the chances of survival at specific periods of time such as three months, or one year, or two years, or five years?
We have found that patients who have been given a specific number of months of life expectancy, do not do well. Our prognosis is not that accurate that we can tell a patient how much time he has to live. If we tell a man that he has six months to live and he survives the six months, he is often in a very difficult predicament in that he is no longer living and not able to die. I think it is much more honest to say that we do not know, the chances look very slim at this time. If he insists on specifics, the physician should then give him some statistical approximations so that he has some idea of how long he has to put his house in order.
How do you assist patients in not feeling guilty tot sharing their feelings in relation to their own death? For example, I have had many patients who, alter crying, find it difficult to continue with an open relationship even though I try to continue supporting them.
I do not think they stop having a relationship with you because they shared their grief and their own feelings. They have probably been able to work through their anger and their reactive depression and are now in the process of a preparatory grief during which time they are beginning to "wean off," that is to separate and to decathect. This means that they will look for fewer interpersonal relationships. They want to see acquaintances and relatives once more, then the children once more, and at the end they usually like to maintain a relationship with one or two people, usually their immediate next-of-kin.
How would you approach the subject of death when dealing with people who are continually faced with possibility of death but are never "condemned," as with a coronary patient?
There are many patients who are continuously faced with the possibility of death. These patients have to come to grips with their own finiteness. Then they are able to live a very different quality of life, knowing that death can occur anytime, but hoping that there will still be many more weeks and months ahead. These patients should not be avoided; they are the ones who should face the reality of their own death as early as possible.
How does a professional person respond to a nonpro-fessional person when told that "You are cold and indifferent to death"?
I would look into the mirror and question whether there is not some truth in the statement. If I do not feel cold and indifferent toward this person's death and the grief of the family, I would regard it as part of the anger that this family is now going through in relation to the recent loss.
When a family is in a stage of anger, especially after a sudden, unexpected loss, they often displace their anger onto nondeserving members of the health team. If it is unjustified, simply accept it as an expression of their turmoil.
What dangers, if any, are there in becoming too involved emotionally with feelings of terminal patients?
If you have a good team approach where other members of your staff watch over you and with whom you can share your own feelings, there is very little danger in becoming too involved. If you are working full time and in solo practice with many dying patients, there is a risk that you will get too involved, and thus too drained emotionally and physically. No one should work exclusively with dying patients. It is not possible to do this on a full-time basis.
Does one develop through experience an intuition that says, "Yes, now he is talking about his death"? Do you sometimes misfire? Does the patient sometimes "announce" his own death prematurely, or is his intuition always accurate?
I do not know if this is intuition that says, "Yes, now he is talking about his death." I think if you can hear and listen to patients, you'll know when they are talking about their own impending death and will respond to it. Naturally, all of us misfire once in a while. The patient occasionally is concerned about his own premature death when, in fact, he has a fairly good prognosis. It is important to make the differential diagnosis between a pathological fear of death, where the concern of one's death arises with every little symptom, and a "message" from the patient who is terminally ill and who senses that his days are counted. Rather than intuition, I would say that experience and the art of listening will help you to misfire less often.
Should one try to get the patient and the patient's family on the same level, that is to say, at the same "stage" of dying? For example, anger, denial, acceptance?
That is a utopic dream and I don't think this works. This is, again, projecting our own needs rather than accepting people wherever they are and being available when and if they are ready to move on to the next stage.
How do you handle the Lazareth syndrome? i.e., the dying patient prepared for death who goes on to recover?
I would rejoice with him.
DENIAL AS A FIRST LINE OF DEFENSE
How would you work with a patient who shows clinical evidence of cancer, but who refuses further diagnostic studies such as bronchoscopy or an exploratory operation for apparent cancer of the lung, or X rays to determine il the cancer is operable and/or likely to benefit from radiation treatment?
A patient has the right to refuse treatment. I think you should level with him, you should tell him what you suspect, and you should give him the option, but it is up to him to reject it or to accept your offer.
Why is it that many doctors still refuse to tell patients that they have terminal illnesses? Is this trend changing?
There are many physicians who are uncomfortable about telling their patients they are seriously ill, but the trend is changing. More and more physicians are beginning to be comfortable about this. We now have more medical schools who include the care of the dying patient in their curriculum. With medical students having had some instruction, some lectures or workshops, and some assistance during their formative years, there is a good chance that there will be more physicians in the near future who will be comfortable with dying patients.
What does a nursing stag do with the patient who has gone through the whole dying process and remains in the stage of denial?
They naturally allow the patient to stay in the stage of denial and treat him like any other patient.
Please tie in the stages of dying with loss of sight. I'm now working with a woman who is losing her sight and is in the denial stage. The doctor has not told her yet. What is my role as a social worker?
Listen to her. This patient will share with you her horrible fear of becoming blind. You then let her talk about it. Tell her about talking books, about the white cane, about the seeing eye dog, about all the people who can live a very normal life in spite of being blind. Don't tell her it's not terrible, but simply tell her that blind people can function like sighted ones. She will then be comfortable and able to talk with you about it if her doctor is too uncomfortable to do so. All my patients that became blind have gone through the same stages as my dying patients. I have worked with blind patients for fifteen years and I'm very impressed with the fact that they axe going through the same stages as anyone else who is in the process of losing something very important.
Must we wait until a patient has been told before we try to help him? How can we reach out to the patient who does not seem to progress from the stage of denial?
We must not wait until the patient has been told about his illness before we help him. There are many ways we can help him. We have to understand the symbolic language that patients use when they remain in the stage of denial and yet talk about their dying. We can give them comfort: physical, spiritual, and emotional. We can sit down with them and say, "It's tough, isn't it?" and these remarks will very often open up the floodgates and the patient will talk with you about his fear, his discomfort, or his fantasies.
A patient with a history of cancer (surgery two years previously) is advised readmission for symptoms, but instead goes to Florida for the winter. Is this denial? His wife goes along with his decision and goes on this journey.
A patient who has had cancer two years before and has a readmission for similar symptoms probably senses that this is now a recurrence of his cancer. He also probably knows that the months, perhaps the years ahead, will be filled with hospitalizations and less and less functioning. It may be his way of saying, "Let's live it up once more. Let's get this trip to Florida in so that we can at least have a memory of having been together in Florida, a dream that we were always dreaming about but were never able to fulfill." After he has completed this unfinished business he will most likely return to the hospital and be a much better patient than if he always nostalgically thinks, "If I had only gone to Florida with my wife." It is, again, important that we do not judge these patients because they do not gratify our needs for an immediate hospitalization and that we do not necessarily label them as "denial." All that it means is that this man has made a choice; it is his choice and his right to make it.
What does a nursing stag do with patients who stay in a complete denial until their death?
They treat them just like any other needy human being and remember that some people need denial and that this should not be broken artificially just because we would like them to drop their denial.
A man has an inoperable cancer, but the doctors say he probably will be able to live almost normally for a year or so before the decline begins. The wile has decided not to tell him as long as he is living in reasonably good health, then tell him. He should still have enough time to "get his affairs in order." Is this the right approach?
This may be the right approach for some patients who need denial themselves, to tell them as late as possible, but this is the exception to the rule. Most patients do better if they are told early that they are seriously ill, but are allowed to have hope, i.e., that he can live normally for a reasonable length of time. If the patient should ask the physician directly whether he has a malignancy or not, the patient has the right to be told, and if he is not informed, the physician may in certain circumstances be liable to a suit later on.
Mr. X, age twenty-two, with cancer, claims to have been miraculously healed. However, all indications are that he is in terminal stages. What role can we play? Is he simply playing this game for the family's sake and does he really recognize his true state?
If a young man with terminal cancer makes a statement that he is miraculously healed, this means to me that he wants to believe in a miracle in spite of the fact that from a medical point of view he's regarded as terminally ill. I would sit with him and say, "Yes, miracles do sometimes happen" and wait for a while and continue to visit with him so that he has an opportunity to share with you his feelings about his terminal illness or his belief that he has been cured. It is not your role, whether you are a member of a helping profession or a family member, to break down a defense. It is your role to help the patient, and if he needs to believe that he is cured, it is cruel and un-therapeutic to tell him there are no such things as miracles. If you do not believe, yourself, that miracles do happen sometimes, you can simply ask him to tell you more about it. He may even end up convincing you. Over the last eight years we have had several patients who had been given up, and from a medical point of view had no practical chance of recovery, but who are still alive several years after the predicted date of their death.
I have a patient dying now. She's behaving as if she doesn't know it or she may be denying it. How can I grind this out? How can I make her comfortable and what can I talk about?
I think it is important that you do not "grind it out." If she appears to be in pain ask her if she has enough pain relief. If she is restless, sit with her and hold her hand and ask her simply, "What can I do to make you comfortable?" The patient will then tell you what her needs are. I think we are always trying to play a strange guessing game, perhaps pretending to ourselves that we are all-knowing, omnipotent human beings. If you don't know how to help a patient, simply ask her. She may tell you to get a special friend in or she may tell you to get a member of the clergy. She may want to put her house in order or to make a last will. These requests tell you that she knows that she is dying.
You said at one time that every dying person should have one human being who does not need to deny death. Is there such a person or don't we all have our own style of denial?
There are many people who do not deny the reality of death. It requires a long working-through process in our death denying society, but once you have faced your own finiteness and have accepted it, you will see that life becomes much more meaningful and more valuable. Those people who have truly faced their own finiteness will be much better equipped to help dying patients.
Can you give a Jew more suggestions of how to handle a patient when he asks, "Why me?"
I tell them, "I don't know why you," but you may ask the question the other way around, "Why not you?" Since all of us have to face death and dying it has to happen to any one of us sooner or later. He is really asking "Why is it happening to me now?" I would let him raise this question so that he will then be able to express his anger and anguish and ventilate all his feelings of dismay and other concerns. This will give you cues as to how to help him.
I am a terminally ill patient. When ... (More)