malignancy is found. Such a patient has more time to prepare herself for the possibility of a cancer and will be better prepared to accept more extensive surgery should it be necessary. When the patient awakens from the surgical procedure the doctor can say, "I am sorry, we had to do the more extensive surgery. " If the patient, responds, Thank God, it was benign, " he can simply say, "I wish that were true, and then silently sit with her for a while and not run off. Such a patient may pretend not to know for several days. It would be cruel for a physician to force her to accept the fact when she clearly communicates that she is not vet ready to hear it. The fact that he has told her once will be sufficient to maintain confidence in the doctor. Such a patient will seek him out later when she is able and strong enough to face the possible fatal outcome of her illness Another patient's response may be, "Oh, doctor, how terrible, how long do i have to live? " The physician may then tell her how much has been achieved in recent years in terms of extending the life span of such patients, and about the possibility of additional surgery which has shown good results; he may tell her Hank, that nobody knows how long she can live. I think it is the worst possible management of any patient, no matter how strong, to give him a concrete number of months or years. Since such information is wrong in any case, and exceptions in both directions are the rule, I see no reason why we even consider such information. There may be a need in some rare instances where a head of a household should be informed of the shortness of his expected life in order to bring his affairs in order. I think even in such cases a tactful understanding physician can communicate to his patient that he may be better off putting his affairs in order while he has the leisure and strength to do so, rather than to wait too long. Such a patient will most likely get the implicit message while still able to maintain the hope which each and every patient has to keep including the ones who say that they are ready to die. Our interviews have shown that all patients have kept a door open to the possibility of continued existence, and not one of them has at all times maintained that there is no wish to live at all When we asked our patients how they had been told, wedarned that all the patients knew about their terminal illness anyway, whether they were explicitly told or not, but depended greatly on the physician to present the news in an acceptable manner What, then, is an acceptable manner? How does a physician know which patient wants to hear it briefly, which one with a long scientific explanation, and which one wants to avoid the (P28) issue all together? How do we know when we do not have the advantage of knowing the patient well enough before being confronted with such decisions? The answer depends on two things. The most important one is our own attitude and ability to face terminal illness and death. If this is a big problem in our own life, and death is viewed as a frightening, horrible, taboo topic, we will never be able to face it calmly and helpfully with patient. And I say death"on purpose, even if we only have to answer the question of malignancy or no malignancy. The former is al ways associated with impending death, a destructive nature of death, and it is the former that evokes all the emotions. If we cannot face death with equanimity how can we be of assistance to our patients? We, then, hope that our patients will not ask us this
malignancy is found. Such a patient has more time to prepare herself for the possibility of a cancer and will be better prepared to accept more. extensive surgery should it be necessary. When the patient awakens from the surgical procedure the doctor can say, "I am sorry, we had to do the more extensive surgery." If the patient, responds, "Thank God, it was benign," he can simply say, "I wish that were true," and then silently sit with her for a while and not run off. Such a patient may pretend not to know for several days. It would be cruel for a physician to force her to accept the fact when she clearly communicates that she is not vet ready to hear it. The fact that he has told her once will be sufficient to maintain confidence in the doctor. Such a patient will seek him out later when she is able and strong enough to face the possible fatal outcome of her illness. Another patient's response may be, "Oh, doctor, how terrible, how long do I have to live?" The physician may then tell her how much has been achieved in recent years in terms of extending the life span of such patients, and about the possibility of additional surgery which has shown good results; he may tell her Hank, that nobody knows how long she can live. I think it is the worst possible management of any patient, no matter how strong, to give him a concrete number of months or years. Since such information is wrong in any case, and exceptions in both directions are the rule, I see no reason why we even consider such information. There may be a need in some rare instances where a head of a household should be informed of the shortness of his expected life in order to bring his affairs in order. I think even in such cases a tactful understanding physician can communicate to his patient that he may be better off putting his affairs in order while he has the leisure and strength to do so, rather than to wait too long. Such a patient will most likely get the implicit message while still able to maintain the hope which each and every patient has to keep, including the ones who say that they are ready to die. Our interviews have shown that all patients have kept a door open to the possibility of continued existence, and not one of them has at all times maintained that there is no wish to live at all. When we asked our patients how they had been told, we '.darned that all the patients knew about their terminal illness anyway, whether they were explicitly told or not, but depended greatly on the physician to present the news in an acceptable manner. What, then, is an acceptable manner? How does a physician know which patient wants to hear it briefly, which one with a long scientific explanation, and which one wants to avoid the (P28) issue all together? How do we know when we do not have the advantage of knowing the patient well enough before being confronted with such decisions? The answer depends on two things. The most important one is our own attitude and ability to face terminal illness and death. If this is a big problem in our own life, and death is viewed as a frightening, horrible, taboo topic, we will never be able to face it calmly and helpfully with a patient. And I say "death" on purpose, even if we only have to answer the question of malignancy or no malignancy. The former is always associated with impending death, a destructive nature of death, and it is the former that evokes all the emotions. If we cannot face death with equanimity, how can we be of assistance to our patients? We, then, hope that our patients will not ask us this
horrible question. We make rounds and talk about many trivialities or the wonderful weather outside and the sensitive patient will play the game and talk about next spring, even if he is quite aware that there will be no next spring for him. These doctors then, when asked will tell us that their patients do not want to know the truth, that they never ask for it, and that they believe all is well. The doctors are, in fact, greatly relieved that they are not confronted and are often quite unaware that they provoked this response in their patients Doctors who are still uneasy about such discussions but not so defensive may call a chaplain or priest and ask him to talk to the patient. They may feel more at ease having passed on the difficult responsibility to someone else, which may be better than avoiding it altogether. They may, on the other hand be so anxious about it that they leave explicit orders to the staff and chaplain not to tell the patient. The degree of explicitness in such orders will reveal more about the doctors anxiety han they wish to recognize There are others who have less difficulty with this issue and who find a much smaller number of patients unwilling to talk about their serious illness. I am convinced, from the many patients with whom I have spoken about this matter, that those doctors who need denial themselves will find it their patients and that those who can talk about the terminal illness will find their patients better able to face and acknowledge it. The need of denial is in direct proportion with he doctor's need for denial. But this is only half of the problem We have found that different patients react differently to such news depending on their personality makeup and the style and manner they used in their past life. People who use denial as a main defense will use denial much more extensively than others. Patients who faced past stressful situations with open confrontation will do similarly in the present situation. It is, therefore, very helpful to get acquainted with a new patient, in order to elicit his strengths and weaknesses. I will give an example of this Mrs. A, a thirty-year-old white woman, asked us to see her during her hospitalization. She presented herself as a short, obese, pseudo-gay woman who smilingly told us of her " benign lymphoma"for which she had received a variety of treatments including cobalt and nitrogen mustard, known by most people in the hospital to be given for malignancies. She was very familiar with her illness and readily acknowledged having read the literature about it. She suddenly became quite weepy and told a rather pathetic story of how her doctor at home told her of her"benign lymphoma"after receiving the biopsy results. A benign lymphoma? I repeated, expressing some doubt in my voice and then sitting quietly for an answer. Please, doctor, tell me whether it's malignant or benign? she asked but without waiting for my answer, she began a story of a fruitless attempt to get pregnant. For nine years she had hoped for a baby, she went through all possible tests finally through agencies in the hope of adopting a child. She was turned down for many reasons first because she had been married only two and a half years, later because of emotional instabilit perhaps. She had not been able to accept the fact that she could not even have an adopted child Now she was in the hospital and was forced to sign a paper for radiation treatment with the explicit statement that this would result in sterility, thus rendering her finally and irrevocably unable to bear a child. It was unacceptable to her in spite of the fact that she had signed the paper and had undergone the preliminary work-up for the radiation. Her abdomen was marked and she was to have her first treatment the following morning
horrible question. We make rounds and talk about many trivialities or the wonderful weather outside and the sensitive patient will play the game and talk about next spring, even if he is quite aware that there will be no next spring for him. These doctors then, when asked will tell us that their patients do not want to know the truth, that they never ask for it, and that they believe all is well. The doctors are, in fact, greatly relieved that they are not confronted and are often quite unaware .that they provoked this response in their patients. Doctors who are still uneasy about such discussions but not so defensive may call a chaplain or priest and ask him to talk to the patient. They may feel more at ease having passed on the difficult responsibility to someone else, which may be better than avoiding it altogether. They may, on the other hand, be so anxious about it that they leave explicit orders to the staff and chaplain not to tell the patient. The degree of explicitness in such orders will reveal more about the doctors' anxiety than they wish to recognize. There are others who have less difficulty with this issue and who find a much smaller number of patients unwilling to talk about their serious illness. I am convinced, from the many patients with whom I have spoken about this matter, that those doctors who need denial themselves will find it in their patients and that those who can talk about the terminal illness will find their patients better able to face and acknowledge it. The need of denial is in direct proportion with the doctor's need for denial. But this is only half of the problem. We have found that different patients react differently to such news depending on their personality makeup and the style and manner they used in their past life. People who use denial as a main defense will use denial much more extensively than others. Patients who faced past stressful situations with open confrontation will do similarly in the present situation. It is, therefore, very helpful to get acquainted with a new patient, in order to elicit his strengths and weaknesses. I will give an example of this: Mrs. A., a thirty-year-old white woman, asked us to see her during her hospitalization. She presented herself as a short, obese, pseudo-gay woman who smilingly told us of her "benign lymphoma" for which she had received a variety of treatments including cobalt and nitrogen mustard, known by most people in the hospital to be given for malignancies. She was very familiar with her illness and readily acknowledged having read the literature about it. She suddenly became quite weepy and told a rather pathetic story of how her doctor at home told her of her "benign lymphoma" after receiving the biopsy results. "A benign lymphoma?" I repeated, expressing some doubt in my voice and then sitting quietly for an answer. "Please, doctor, tell me whether it's malignant or benign?" she asked but without waiting for my answer, she began a story of a fruitless attempt to get pregnant. For nine years she had hoped for a baby, she went through all possible tests, finally through agencies in the hope of adopting a child. She was turned down for many reasons first because she had been married only two and a half years, later because of emotional instability perhaps. She had not been able to accept the fact that she could not even have an adopted child. Now she was in the hospital and was forced to sign a paper for radiation treatment with the explicit statement that this would result in sterility, thus rendering her finally and irrevocably unable to bear a child. It was unacceptable to her in spite of the fact that she had signed the paper and had undergone the preliminary work-up for the radiation. Her abdomen was marked and she was to have her first treatment the following morning
This communication revealed to me that she was not able to (P30) accept the fact yet. She asked the question of the malignancy but did not wait for an answer. She also told me of her inability to accept the fact of her childlessness in spite of her acceptance of the radiation treatment. She went on at great length to tell about all the details of her unfulfilled wish and kept on looking at me with big question marks in her eyes. i told her that she might be talking about her inability to face her illness rather than her inability to face being barren I told her that I could understand this. I also said that both situations were difficult but not hopeless and left her with the promise to return the next day after the treatment It was on the way to the first radiation treatment that she confirmed her knowledge of her malignancy, but she hoped that this treatment might cure it. during the following informal, almost social visits, she fluctuated between talking about babies and her malignancy. She became increasingly tearful and dropped her pesudo-gay appearnce during these sessions. She asked for a "magic button which would enable her to get rid of all her fears and free her from the heavy burden in her chest. She was deeply concerned about the expected new roommate, "worrying to death"as she called it that she would get a terminally sick woman. Since the nursing staff on her ward was very understanding, we related her fears to them, and she became the companion of a cheerful young woman who was a great relief to her. The nursing staff also encouraged her to cry when she felt like it, rather than expecting her to smile all the time, which the patient appreciated. She had a great capacity to determine with whom she could talk about her malignancy and chose the less willing ones for her conversations about babies. The staff was quite surprised to hear of her awareness and ability to discuss her future realistically It was after a few very fruitful visits that the patient suddenly asked me if I had children and when I acknowledged this, she asked to terminate the visit because she was tired. The following visits were filled with angry, nasty remarks at the nursing staff, psychiatrists, and others until she was able to admit her feelings of envy for the healthy and the young, but especially towards me since I seemed to have everything. When she realized that she was not rejected in spite of becoming at times a rather difficult patient, she became increasingly aware of the origin of her anger and expressed it quite directly as anger at God for allowing her to die so young and so unfulfilled. The hospital chaplain fortunately was not a punitive but a very understanding man and talked with her about this anger in much the same terms as I did until her anger subsided to make room for more depression and, it is hoped, final acceptance of her fate Until the present time, this patient still maintains this dichotomy in regard to her chief problem. To one group of people she only relates as a conflicted woman in terms of her childlessness; to the chaplain and me, she talks about the meaning of her short life and the hopes she still maintains (rightfully so) for prolonging it. Her greatest fear at the time of this writing is the possibility of her husband marrying another woman who might bear children, but then she laughingly admits, "He is not the shah of Persia, though a really great man. She still has not completely coped with her envy for the living. The fact that she does not need to maintain denial or displace it onto another tragic but more acceptable problem allows her to deal with her illness more successfully
This communication revealed to me that she was not able to (P30) accept the fact yet. She asked the question of the malignancy but did not wait for an answer. She also told me of her inability to accept the fact of her childlessness in spite of her acceptance of the radiation treatment. She went on at great length to tell about all the details of her unfulfilled wish and kept on looking at me with big question marks in her eyes. I told her that she might be talking about her inability to face her illness rather than her inability to face being barren. I told her that I could understand this. I also said that both situations were difficult but not hopeless and left her with the promise to return the next day after the treatment. It was on the way to the first radiation treatment that she confirmed her knowledge of her malignancy, but she hoped that this treatment might cure it. During the following informal, almost social visits, she fluctuated between talking about babies and her malignancy. She became increasingly tearful and dropped her pesudo-gay appeaarnce during these sessions. She asked for a "magic button which would enable her to get rid of all her fears and free her from the heavy burden in her chest. She was deeply concerned about the expected new roommate, "worrying to death" as she called it that she would get a terminally sick woman. Since the nursing staff on her ward was very understanding, we related her fears to them, and she became the companion of a cheerful young woman who was a great relief to her. The nursing staff also encouraged her to cry when she felt like it, rather than expecting her to smile all the time, which the patient appreciated. She had a great capacity to determine with whom she could talk about her malignancy and chose the less willing ones for her conversations about babies. The staff was quite surprised to hear of her awareness and ability to discuss her future realistically. It was after a few very fruitful visits that the patient suddenly asked me if I had children and when I acknowledged this, she asked to terminate the visit because she was tired. The following visits were filled with angry, nasty remarks at the nursing staff, psychiatrists, and others until she was able to admit her feelings of envy for the healthy and the young, but especially towards me since I seemed to have everything. When she realized that she was not rejected in spite of becoming at times a rather difficult patient, she became increasingly aware of the origin of her anger and expressed it quite directly as anger at God for allowing her to die so young and so unfulfilled. The hospital chaplain fortunately was not a punitive but a very understanding man and talked with her about this anger in much the same terms as I did until her anger subsided to make room for more depression and, it is hoped, final acceptance of her fate. Until the present time, this patient still maintains this dichotomy in regard to her chief problem. To one group of people she only relates as a conflicted woman in terms of her childlessness; to the chaplain and me, she talks about the meaning of her short life and the hopes she still maintains (rightfully so) for prolonging it. Her greatest fear at the time of this writing is the possibility of her husband marrying another woman who might bear children, but then she laughingly admits, "He is not the shah of Persia, though a really great man." She still has not completely coped with her envy for the living. The fact that she does not need to maintain denial or displace it onto another tragic but more acceptable problem allows her to deal with her illness more successfully
Another example of a problem of"to tell or not to tell "is No. D, of whom nobody was sure whether he knew the nature of his illness. The staff was convinced that the patient did not know the great seriousness of his condition, since he never allowed any body to get close to him. He never asked a question about it, and seemed in general rather feared by the staff. The nurses were ready to i approached him hesitantly and asked him simply "How sick are you? ""I am full of cancer.3, bet that he would never accept an invitation to discuss the matter with me. Anticipating difficulties, was his answer. The problem with him was that nobody ever asked a simple straightforward question. They mistook his grim look as a closed door; in fact, their own anxiety prevented them from finding out what he, wanted to share so badly with another human being If malignancy is presented as a hopeless disease which results in a sense of "what's the use, there is nothing we can do anyway, " it will be the beginning of a difficult time for the patient and for those around him. The patient will feel the increasing isolation, the loss of interest on part of his doctor the isolation and increasing hopelessness. He may rapidly deteriorate or fall into a deep depression from which he may not emerge unless someone is able to give him a sense of hope (P32) The family of such patients may share their feelings of sorrow and uselessness, hopelessness and despair, and add little to the patient's well-being. They may spend the short remaining time in a morbid depression instead of an enriching experience which is often encountered when the physician responds as outlined earlier I have to emphasize, though, that the patient's reaction does not depend solely on how the doctor tells him. The way in which the bad news is communicated is, however, an important factor which is often underestimated and which should be given more emphasis in the teaching of medical students and supervision of young physicians In summary, then, I believe the question should not be stated, "Do I tell my patient? but should be rephrased as, " How do I share this knowledge with- my patient? The physician should first examine his own attitude toward malignancy and death so that he is able to talk about such grave matters without undue anxiety. He should listen for cues from the patient which enable him to elicit the patient's willingness to face the reality. The more people in the patient's environment who know the diagnosis of a malignancy, the sooner the patient himself will realize the true state of affairs anyway, since few people are actors enough to maintain a believable mask of cheerfulness over a long period of time. Most if not all of the patients know anyway. They sense it by the changed attention, by the new and different approach that people take to them, by the lowering of voices or avoidance of rounds, by a tearful face of a relative or an ominous, smiling member of the family who cannot hide their true feelings. They will pretend not to know when the doctor or relative is unable to talk about their true condition, and they will welcome someone who is willing to talk about it but allows them to keep their defenses as long as they have the need for them Whether the patient is told explicitly or not, he will nevertheless come to this awareness and may lose confidence in a doctor who either told him a lie or who did not help him face the seriousness of his illness while there might have been time to get his affairs in order
Another example of a problem of "to tell or not to tell" is No. D., of whom nobody was sure whether he knew the nature of his illness. The staff was convinced that the patient did not know the great seriousness of his condition, since he never allowed anybody to get close to him. He never asked a question about it, and seemed in general rather feared by the staff. The nurses were ready to bet that he would never accept an invitation to discuss the matter with me. Anticipating difficulties, I approached him hesitantly and asked him simply, "How sick are you?" "I am full of cancer . . ." was his answer. The problem with him was that nobody ever asked a simple straightforward question. They mistook his grim look as a closed door; in fact, their own anxiety prevented them from finding out what he ,wanted to share so badly with another human being. If malignancy is presented as a hopeless disease which results in a sense of "what's the use, there is nothing we can do anyway," it will be the beginning of a difficult time for the patient and for those around him. The patient will feel the increasing isolation, the loss of interest on part of his doctor, the isolation and increasing hopelessness. He may rapidly deteriorate or fall into a deep depression from which he may not emerge unless someone is able to give him a sense of hope. (P32) The family of such patients may share their feelings of sorrow and uselessness, hopelessness and despair, and add little to the patient's well-being. They may spend the short remaining time in a morbid depression instead of an enriching experience which is often encountered when the physician responds as outlined earlier. I have to emphasize, though, that the patient's reaction does not depend solely on how the doctor tells him. The way in which the bad news is communicated is, however, an important factor which is often underestimated and which should be given more emphasis in the teaching of medical students and supervision of young physicians. In summary, then, I believe the question should not be stated, "Do I tell my patient?" but should be rephrased as, "How do I share this knowledge with- my patient?" The physician should first examine his own attitude toward malignancy and death so that he is able to talk about such grave matters without undue anxiety. He should listen for cues from the patient which enable him to elicit the patient's willingness to face the reality. The more people in the patient's environment who know the diagnosis of a malignancy, the sooner the patient himself will realize the true state of affairs anyway, since few people are actors enough to maintain a believable mask of cheerfulness over a long period of time. Most if not all of the patients know anyway. They sense it by the changed attention, by the new and different approach that people take to them, by the lowering of voices or avoidance of rounds, by a tearful face of a relative or an ominous, smiling member of the family who cannot hide their true feelings. They will pretend not to know when the doctor or relative is unable to talk about their true condition, and they will welcome someone who is willing to talk about it but allows them to keep their defenses as long as they have the need for them. Whether the patient is told explicitly or not, he will nevertheless come to this awareness and may lose confidence in a doctor who either told him a lie or who did not help him face the seriousness of his illness while there might have been time to get his affairs in order
It is an art to share this painful news with any patient. The simpler it is done, the easier it is usually for a patient who recollects it at a later date, if he can't " hear it"at the moment. Our patients appreciated it when they were told in the privacy of a little room rather than being told in the hall way of a crowded clinic What all of our patients stressed was the sense of empathy which counted more than the immediate tragedy of the news. It was the reassurance that everything possible will be done, that they will not be"dropped "that there were treatments available, that there was a glimpse of hope-even in the most advanced cases. If the news can be conveyed in such a manner, the patient will continue to have confidence in the doctor and he will have time to work through the different reactions which will enable him to cope with this new and stressful life situation In the following pages is an attempt to summarize what we have learned from our dying patients in terms of coping mechanisms at the time of a terminal illness (P34) First Stage: Denial and Isolation Man barricades against himself. Tagore, from Stray Birds, LXXIX Among the over two hundred dying patients we have interviewed, most reacted to the awareness of a terminal illness at first with the statement. No. not me. it cannot be true " This initial denial was as true for those patients who were told outright at the beginning of their illness as it was true for those who were not told explicitly and who came to this conclusion on their own a bit later on. One of our patients described a long and expensive ritual, as she called it, to support her denial. She was convinced that the X-rays were "mixed up", she asked for reassurance that her pathology report could not possibly be back so soon and that another patient's report must have been marked with her name. When none of this could be confirmed, she quickly asked to leave the hospital, looking for another physician in the vain hope"to get a better explanation for my troubles. This patient went"shopping around"for many doctors, some of whom gave her reassuring answers, others of whom confirmed the previous suspicion. Whether confirmed or not, she reacted in the same manner; she asked for examination and re-examination, partially knowing that the original diagnosis w correct, but also seeking further evaluations in the hope that the first conclusion was indeed an error at the same time keeping in r contact with a physician in order to have help available"at all times "as she said This anxious denial following the presentation of a diagnosis is more typical of the patient who informed prematurely or abruptly by someone who does not know the patient well or does it
It is an art to share this painful news with any patient. The simpler it is done, the easier it is usually for a patient who recollects it at a later date, if he can't "hear it" at the moment. Our patients appreciated it when they were told in the privacy of a little room rather than being told in the hallway of a crowded clinic. What all of our patients stressed was the sense of empathy which counted more than the immediate tragedy of the news. It was the reassurance that everything possible will be done, that they will not be "dropped," that there were treatments available, that there was a glimpse of hope-even in the most advanced cases. If the news can be conveyed in such a manner, the patient will continue to have confidence in the doctor, and he will have time to work through the different reactions which will enable him to cope with this new and stressful life situation. In the following pages is an attempt to summarize what we have learned from our dying patients in terms of coping mechanisms at the time of a terminal illness. ========================= (P34) III First Stage: Denial and Isolation Man barricades against himself. Tagore, from Stray Birds, LXXIX Among the over two hundred dying patients we have interviewed, most reacted to the awareness of a terminal illness at first with the statement, "No, not me, it cannot be true." This initial denial was as true for those patients who were told outright at the beginning of their illness as it was true for those who were not told explicitly and who came to this conclusion on their own a bit later on. One of our patients described a long and expensive ritual, as she called it, to support her denial. She was convinced that the X-rays were "mixed up"; she asked for reassurance that her pathology report could not possibly be back so soon and that another patient's report must have been marked with her name. When none of this could be confirmed, she quickly asked to leave the hospital, looking for another physician in the vain hope "to get a better explanation for my troubles." This patient went "shopping around" for many doctors, some of whom gave her reassuring answers, others of whom confirmed the previous suspicion. Whether confirmed or not, she reacted in the same manner; she asked for examination and re-examination, partially knowing that the original diagnosis was correct, but also seeking further evaluations in the hope that the first conclusion was indeed an error, at the same time keeping in r contact with a physician in order to have help available "at all times" as she said. (P35) This anxious denial following the presentation of a diagnosis is more typical of the patient who is informed prematurely or abruptly by someone who does not know the patient well or does it