that the best possible way we could study death and dying was by asking terminally ill patients to be our teachers. We would observe critically ill patients, study their responses and needs, evaluate the reactions of the people around them, and get as close to the dying as they would allow us We decided to interview a dying patient the following week. We agreed on time and place, and the whole project seemed nether simple and uncomplicated. Since the students had no clinical experience and no past encounter with terminally ill patients in a hospital, we expected some emotional reaction on their part. I was to do the interview while they stood around the bed watching and observing. We would then retire to my office and discuss our own reactions and the patient's response. we believed that by doing many interviews like this we would get a feeling for the terminally ill and their needs which in turn we were ready to gratify if possible We had no other preconceived ideas nor did we read any papers or publications on this topic so that we might have an open mind and record only what we ourselves were able to notice, both in the patient and in ourselves. We also purposely did not study the patient' s chart since this too migl dilute or alter our own observations. We did not want to have any preconceived notion as to how the patients might react. We were quite prepared, however, to study all available data after we had recorded our own impressions. This, we thought, would sensitize us to the needs of the critically ill would enhance our perceptiveness and, we hoped, desensitize the rather frightened students through an increasing number of confrontations with terminally ill patients of different ages and background We were well satisfied with our plans and it was not until a few days later that our difficulties started I set out to ask physicians of different services and wards for permission to interview a terminall ill patient of theirs. The reactions were varied, from stunned looks of disbelief to rather abrupt changes of topic of conversation; the end result being that I did not get one single chance even to et near such a patient. Some doctors "protected"their patients by saying that they were too sick, too tired or weak, or not the talking kind; others bluntly refused to take part in such a project. I have to add in their defense that they were justified to some degree, as I, had just started my work in this hospital and no one had had a chance to know me or my style and type of work. They had no Assurance, except from me, that the patients were not to be traumatized, that those who had not been told of the seriousness of their illness would not be told. Also, these physicians were not aware of my past experience with the dying in other hospitals I have added this in order to present their reactions as fairly as I can. These doctors were both very defensive when it came to talking about death and dying and also protective of their patients in order to avoid a traumatic experience with a yet unknown faculty member who had just joined their ranks. It suddenly seemed that there were no dying patients in this huge hospital. M v phone calls and personal visits to the wards were all in vain. Some physicians said politely that they would think about it, others said they did not wish to expose their patients to such questioning as it might tire them too much. A nurse angrily asked in utter disbelief if I enjoyed telling a twenty-year-old
that the best possible way we could study death and dying was by asking terminally ill patients to be our teachers. We would observe critically ill patients, study their responses and needs, evaluate the reactions of the people around them, and get as close to the dying as they would allow us. We decided to interview a dying patient the following week. We agreed on time and place, and the whole project seemed nether simple and uncomplicated. Since the students had no clinical experience and no past encounter with terminally ill patients in a hospital, we expected some emotional reaction on their part. I was to do the interview while they stood around the bed watching and observing. We would then retire to my office and discuss our own reactions and the patient's response. We (p20) believed that by doing many interviews like this we would get a feeling for the terminally ill and their needs which in turn we were ready to gratify if possible. We had no other preconceived ideas nor did we read any papers or publications on this topic so that we might have an open mind and record only what we ourselves were able to notice, both in the patient and in ourselves. We also purposely did not study the patient's chart since this too might dilute or alter our own observations. We did not want to have any preconceived notion as to how the patients might react. We were quite prepared, however, to study all available data after we had recorded our own impressions. This, we thought, would sensitize us to the needs of the critically ill, would enhance our perceptiveness and, we hoped, desensitize the rather frightened students through an increasing number of confrontations with terminally ill patients of different ages and backgrounds. We were well satisfied with our plans and it was not until a few days later that our difficulties started. I set out to ask physicians of different services and wards for permission to interview a terminally ill patient of theirs. The reactions were varied, from stunned looks of disbelief to rather abrupt changes of topic of conversation; the end result being that I did not get one single chance even to get near such a patient. Some doctors "protected" their patients by saying that they were too sick, too tired or weak, or not the talking kind; others bluntly refused to take part in such a project. I have to add in their defense that they were justified to some degree, as I, had just started my work in this hospital and no one had had a chance to know me or my style and type of work. They had no Assurance, except from me, that the patients were not to be traumatized, that those who had not been told of the seriousness of their illness would not be told. Also, these physicians were not aware of my past experience with the dying in other hospitals. I have added this in order to present their reactions as fairly as I can. These doctors were both very defensive when it came to talking about death and dying and also protective of their patients in order to avoid a traumatic experience with a yet unknown faculty member who had just joined their ranks. It suddenly seemed that there were no dying patients in this huge hospital. M v phone calls and personal visits to the wards were all in vain. Some physicians said politely that they would think about it, others said they did not wish to expose their patients to such questioning as it might tire them too much. A nurse angrily asked in utter disbelief if I enjoyed telling a twenty-year-old
man that he had only a couple of weeks to live! She walked away before I could tell her more about our plans When we finally had a patient, he welcomed me with open arms. He invited me to sit down and it was obvious that he was eager to speak. I told him that i did not wish to hear him now but would return the next day with my students. I was not sensitive enough to appreciate his communications It was so hard to get one patient, I had to share him with my students. Little did I realize then that when such a patient says "Please sit down now, tomorrow may be too late. When we revisited him the next day, he was lying back in his pillow, too weak to speak. He made a meager attempt to lift his arm and whispered"Thank you for trying" -he died less than an hour later and kept to himself what he wanted to share with us and what we so desperately wanted to learn It was our first and most painful lesson, but also the beginning of a seminar which was to start as an experiment and ended up to be quite an experience for many The students met with me in my office after this encounter We felt the need to talk about our own experience and wanted to share our reactions in order to understand them. This procedure continued until the present day. Technically little has changed in that respect. We still see a terminally ill patient once a week. We ask him for permission to tape-record the dialogue and leave up to him entirely how long he feels like talking. We have moved from the patient's room to a little interviewing room from which e can be seen and heard but we do not see the audience. from a group of four theology students the class has grown to up to fifty, which necessitated the move to a screen window set When we hear of a patient who may be available for the seminar, we approach him either alone or with one of the students 'Td the referring physician or hospital chaplain, or both. After a brief introduction we state the purpose and timing of our visit, clearly and concretely. I tell each patient that we have an inter-disciplinary (P22) roup of hospital personnel eager to learn from the patient. We emphasize that we need to know more about the very sick and dying patient. We then pause and await the patient's verbal or nonverbal reactions. We do this only after the patient has invited us to talk. a typical dialogue follows DOCTOR: Hello Mr. X. I am Dr. R. and this is Chaplain N. do you feel like talking for a little PATIENT: Please, by all means, sit down DOCTOR: We are here with a peculiar request. Chaplain N. and I are working with a group of people from the hospital who are trying to learn more about very sick and dying patients. I wonder if you feel up to answering some of our questions? PATIENT: Why don' t you ask and I'll see if I can answer them. DOCTOR: How sick are you? PATIENT: I am full of metastasis
man that he had only a couple of weeks to live! She walked away before I could tell her more about our plans. When we finally had a patient, he welcomed me with open arms. He invited me to sit down and it was obvious that he was eager to speak. I told him that I did not wish to hear him now but would return the next day with my students. I was not sensitive enough to appreciate his communications. It was so hard to get one patient, I had to share him with my students. Little did I realize then that when such a patient says "Please sit down now," tomorrow may be too late. When we revisited him the next day, he was lying back in his pillow, too weak to speak. He made a meager attempt to lift his arm and whispered "Thank you for trying"-he died less than an hour later and kept to himself what he wanted to share with us and what we so desperately wanted to learn. It was our first and most painful lesson, but also the beginning of a seminar which was to start as an experiment and ended up to be quite an experience for many. The students met with me in my office after this encounter. We felt the need to talk about our own experience and wanted to share our reactions in order to understand them. This procedure is continued until the present day. Technically little has changed in that respect. We still see a terminally ill patient once a week. We ask him for permission to tape-record the dialogue and leave up to him entirely how long he feels like talking. We have moved from the patient's room to a little interviewing room from which ,e can be seen and heard but we do not see the audience. From a group of four theology students the class has grown to up to fifty, which necessitated the move to a screen window set-up. When we hear of a patient who may be available for the seminar, we approach him either alone or with one of the students 'I'd the referring physician or hospital chaplain, or both. After a brief introduction we state the purpose and timing of our visit, clearly and concretely. I tell each patient that we have an inter-disciplinary (P22) group of hospital personnel eager to learn from the patient. We emphasize that we need to know more about the very sick and dying patient. We then pause and await the patient's verbal or nonverbal reactions. We do this only after the patient has invited us to talk. A typical dialogue follows: DOCTOR: Hello Mr. X. I am Dr. R. and this is Chaplain N. Do you feel like talking for a little while? PATIENT: Please, by all means, sit down. DOCTOR: We are here with a peculiar request. Chaplain N. and I are working with a group of people from the hospital who are trying to learn more about very sick and dying patients. I wonder if you feel up to answering some of our questions? PATIENT: Why don't you ask and I'll see if I can answer them. DOCTOR: How sick are you? PATIENT: I am full of metastasis
(Another patient may say, " Do you really want to talk to an old and dying woman? You are young and healthy! anger, until they are in the midst of sharing their agony. We then remind them that this is exace Others are not so receptive at first. They start complaining about their pain, their discomfort, the what we wanted the others to hear and would they consider repeating the same a little time latery When the patient agrees, the doctor has granted permission, and arrangements have been made, the patient is brought personally by us to the interviewing room. Very few of them walk, most are in wheelchairs, a few have to be carried on a stretcher. Where infusions and transfusions are necessary they are brought along. Relatives have not been included, though they have occasionally been interviewed following the dialogue with the patient. Our interviews keep in mind that no one present has much if any background information on the patient. We usually rephrase the purpose of the interview on our way to the interviewing room during which time we emphasize the patient's right to stop the session at any moment for any reason of his own. We again describe the mirror on the wall which makes it possible for the audience to see and hear us and this allows the patient a moment of privacy with us which is often used to alleviate last minute concerns and fears Once in the interviewing room the conversation flows easily and quickly, starting with general information and going on to very personal concerns as shown in actual recorded interviews, a few of which are presented in this book Following each session the patient is first brought back to his room after which the seminar continues. No patient is kept waiting in the hallways. When the interviewer has returned to the classroom he joins the audience and together we discuss the event. Our own spontaneous reactions re brought to light, no matter how appropriate or irrational. We discuss our different responses both emotional and intellectual. We discuss the patient's response to different interviewers and different questions and approaches and finally attempt a psychodynamic understanding of hi communications. We study his strengths and weaknesses as well as ours in the management of this given person and conclude by recommending certain approaches that we hope will make the patient's final days or weeks more comfortable None of our patients has died during the interview. Survival ranged from twelve hours to several months. Many of our more recent patients are still alive and many of the very critically ill patients have had a remission and have gone home once more. Several of them have had no relapse and are doing well. I emphasize this since we are talking about dying with patients who are not actually dying in the classical sense of the word. We are talking with many if not most of them about this event because it is something that they have faced because of the occurrence of a usually fatal ilIness-our intervention may take place at any time between the making of the diagnosis until just before death The discussion serves many purposes, as we have found out by experience. It has been most helpful in making the students aware of the necessity of considering death as a real possibility, not only for others but also for themselves. It has proven to be a meaningful way of desensitization, which comes slowly and painfully. Many a student appearing for the first time has left before the
(Another patient may say, "Do you really want to talk to an old and dying woman? You are young and healthy!") Others are not so receptive at first. They start complaining about their pain, their discomfort, their anger, until they are in the midst of sharing their agony. We then remind them that this is exactly what we wanted the others to hear and would they consider repeating the same a little time later. When the patient agrees, the doctor has granted permission, and arrangements have been made, the patient is brought personally by us to the interviewing room. Very few of them walk, most are in wheelchairs, a few have to be carried on a stretcher. Where infusions and transfusions are necessary, they are brought along. Relatives have not been included, though they have occasionally been interviewed following the dialogue with the patient. Our interviews keep in mind that no one present has much if any background information on the patient. We usually rephrase the purpose of the interview on our way to the interviewing room during which time we emphasize the patient's right to stop the session at any moment for any reason of his own. We again describe the mirror on the wall which makes it possible for the audience to see and hear us and this allows the patient a moment of privacy with us which is often used to alleviate last minute concerns and fears. Once in the interviewing room the conversation flows easily and quickly, starting with general information and going on to very personal concerns as shown in actual recorded interviews, a few of which are presented in this book. Following each session the patient is first brought back to his room after which the seminar continues. No patient is kept waiting in the hallways. When the interviewer has returned to the classroom he joins the audience and together we discuss the event. Our own spontaneous reactions are brought to light, no matter how appropriate or irrational. We discuss our different responses, both emotional and intellectual. We discuss the patient's response to different interviewers and different questions and approaches and finally attempt a psychodynamic understanding of his communications. We study his strengths and weaknesses as well as ours in the management of this given person and conclude by recommending certain approaches that we hope will make the patient's final days or weeks more comfortable. None of our patients has died during the interview. Survival ranged from twelve hours to several months. Many of our more recent patients are still alive and many of the very critically ill patients have had a remission and have gone home once more. Several of them have had no relapse and are doing well. I emphasize this since we are talking about dying with patients who are not actually dying in the classical sense of the word. We are talking with many if not most of them about this event because it is something that they have faced because of the occurrence of a usually fatal illness-our intervention may take place at any time between the making of the diagnosis until just before death. The discussion serves many purposes, as we have found out by experience. It has been most helpful in making the students aware of the necessity of considering death as a real possibility, not only for others but also for themselves. It has proven to be a meaningful way of desensitization, which comes slowly and painfully. Many a student appearing for the first time has left before the
interview was over. Some were finally able to sit through a whole session but were unable to express their opinions (P24) in the discussion. Some of them have displaced all their anger and rage onto other participants or the interviewer, at times onto the patients. The last has occasionally happened when a patient apparently faced death with calmness and equanimity while the student was highly upset by the encounter. The discussion then revealed that the student thought the patient was unrealistic or even king, because it was inconceivable to him that anyone could face such a crisis with so much Other participants began to identify with the patients, especially if they were of the same age and had to deal with these conflicts in the discussion-and long afterwards. As those in the group began to know each other and realized that nothing was taboo, the discussions became a sort of group therapy for the participants, with many frank confrontations, mutual support, and at times painful discoveries and insights. Little did the patients realize the impact and long-lasting effects many of the communications had on a great variety and number of students Two years after the creation of this seminar, it became an accredited course for the medical school and the theological seminary. It is also attended by many visiting physicians, by nurses and nur aids, orderlies, social workers, priests and rabbis, by inhalation therapists and occupational therapists, but only rarely by faculty members of our own hospital. The medical and theology students who take it as a formal credit course are also attending a theoretical session, which deals with theory, philosophical, moral, ethical, and religious questions, and which is alternately held by the author and the hospital chaplain All interviews are tape-recorded and remain available to students and teachers. At the end of each quarter each student writes a paper on a subject of his own choice. These papers will be presented in a future publication; they range from very personal workings-through of concepts and fears of death to highly philosophical, religious, or sociological papers dealing with death and dying In order to ensure confidentiality, a checklist is made of all those attending, and names and identifying data are altered on all transcribed recordings From an informal get-together of four students, a seminar has grown within two years which is attended by as many as fifty people consisting of members of all the helping professions. Originally it took an average of ten hours a week to get permission from a doctor to ask a patient to be interviewed; now we are rarely forced to search for a patient. We are getting referrals from physicians, nurses, social workers, and most encouragingly, perhaps, from patients who have attended the seminar and have shared their experience with other terminally ill patients who then ask to attend, at times to do us a service,at other times in order to be heard The Dying As Teachers
interview was over. Some were finally able to sit through a whole session but were unable to express their opinions (P24) in the discussion. Some of them have displaced all their anger and rage onto other participants or the interviewer, at times onto the patients. The last has occasionally happened when a patient apparently faced death with calmness and equanimity while the student was highly upset by the encounter. The discussion then revealed that the student thought the patient was unrealistic or even faking, because it was inconceivable to him that anyone could face such a crisis with so much dignity. Other participants began to identify with the patients, especially if they were of the same age and had to deal with these conflicts in the discussion-and long afterwards. As those in the group began to know each other and realized that nothing was taboo, the discussions became a sort of group therapy for the participants, with many frank confrontations, mutual support, and at times painful discoveries and insights. Little did the patients realize the impact and long-lasting effects many of the communications had on a great variety and number of students. Two years after the creation of this seminar, it became an accredited course for the medical school and the theological seminary. It is also attended by many visiting physicians, by nurses and nurses' aids, orderlies, social workers, priests and rabbis, by inhalation therapists and occupational therapists, but only rarely by faculty members of our own hospital. The medical and theology students who take it as a formal credit course are also attending a theoretical session, which deals with theory, philosophical, moral, ethical, and religious questions, and which is alternately held by the author and the hospital chaplain. All interviews are tape-recorded and remain available to students and teachers. At the end of each quarter each student writes a paper on a subject of his own choice. These papers will be presented in a future publication; they range from very personal workings-through of concepts and fears of death to highly philosophical, religious, or sociological papers dealing with death and dying. In order to ensure confidentiality, a checklist is made of all those attending, and names and identifying data are altered on all transcribed recordings. From an informal get-together of four students, a seminar has grown within two years which is attended by as many as fifty people consisting of members of all the helping professions. Originally it took an average of ten hours a week to get permission from a doctor to ask a patient to be interviewed; now we are rarely forced to search for a patient. We are getting referrals from physicians, nurses, social workers, and most encouragingly, perhaps, from patients who have attended the seminar and have shared their experience with other terminally ill patients who then ask to attend, at times to do us a service, at other times in order to be heard. The Dying As Teachers
To tell or not to tell, that is the question In talking to physicians, hospital chaplains, and nursing staff, we are often impressed about their concern for a patient's tolerance of"the truth "Which truth? " is usually our question. The confronting of patients after the diagnosis of a malignancy is made is always difficult. Some physicians favor telling the relatives but keeping the facts from the patient in order to avoid an emotional outburst. Some doctors are sensitive to their patient's needs and can quite successfully present the patient with the awareness of a serious illness without taking all hope away from him i personally feel that this question should never come up as a real conflict. The question should not be"Should we tell.? but rather "How do i share this with my patient? I will try to explain this attitude in the following pages. I will therefore have to categorize crudely the many experiences that patients have when they are faced with the sudden awareness of their own finality. As we have outlined previously, man is not freely willing to look at his own end of life on earth and will only occasionally and half-heartedly take a glimpse at the possibility of his own death. One such occasion,obviously, is the awareness of a life threatening illness. The mere fact that a patient told that he has cancer brings his possible death to his conscious awareness It is often said that people equate a malignancy with terminal illness and regard the two as synonymous: This is basically true and can be a blessing or a curse, depending on the manner in which the patient and family are managed in this crucial situation Cancer is still for most people a terminal illness, in spite of increasing numbers of real cures as well as meaningful remissions. I believe that we should make it a habit to think about death and dying occasionally, I hope before we encounter it in our own life. If we have not done so, the diagnosis of cancer in our family will brutally remind us of our own finality. It may be a blessing, therefore,to use the time of illness to think about death and dying in terms of ourselves, regardless of whether the patient will have to meet death or get an extension of life If a doctor can speak freely with his patients about the diagnosis of malignancy without equating it necessarily with impending death, he will do the patient a great service. He should at the same time leave the door open for hope, namely, new drugs, treatments, chances of new techniques and new research. The main thing is that he communicates to the patient that all is not lost; that he is not giving him up because of a certain diagnosis; that it is a battle they are going to fight together- patient, family, and doctor-no matter the end result. Such a patient will not fear isolation, deceit, rejection, but will continue to have confidence in the honesty of his physician and know that if there is anything that can be done, they will do it together. Such an approach is equally reassuring to the family who often feel terribly impotent in such moments. They greatly depend on verbal or nonverbal reassurance from the doctor. They are encouraged to know that everything possible will be done, if not to prolong life at least to diminish suffering If a patient comes in with a lump in the breast, a considerate doctor will prepare her with the possibility of a malignancy and tell her that a biopsy, for example, will reveal the true nature of the tumor. He will also tell her ahead of time that a more extensive surgery will be required if a
To tell or not to tell, that is the question. In talking to physicians, hospital chaplains, and nursing staff, we are often impressed about their concern for a patient's tolerance of "the truth." "Which truth?" is usually our question. The confronting of patients after the diagnosis of a malignancy is made is always difficult. Some physicians favor telling the relatives but keeping the facts from the patient in order to avoid an emotional outburst. Some doctors are sensitive to their patient's needs and can quite successfully present the patient with the awareness of a serious illness without taking all hope away from him. I personally feel that this question should never come up as a real conflict. The question should not be "Should we tell. . . ?" but rather "How do I share this with my patient?" I will try to explain this attitude in the following pages. I will therefore have to categorize crudely the many experiences that patients have when they are faced with the sudden awareness of their own finality. As we have outlined previously, man is not freely willing to look at his own end of life on earth and will only occasionally and half-heartedly take a glimpse at the possibility of his own death. One such occasion, obviously, is the awareness of a life threatening illness. The mere fact that a patient is told that he has cancer brings his possible death to his conscious awareness. It is often said that people equate a malignancy with terminal illness and regard the two as synonymous: This is basically true and can be a blessing or a curse, depending on the manner in which the patient and family are managed in this crucial situation. (P26) Cancer is still for most people a terminal illness, in spite of increasing numbers of real cures as well as meaningful remissions. I believe that we should make it a habit to think about death and dying occasionally, I hope before we encounter it in our own life. If we have not done so, the diagnosis of cancer in our family will brutally remind us of our own finality. It may be a blessing, therefore, to use the time of illness to think about death and dying in terms of ourselves, regardless of whether the patient will have to meet death or get an extension of life. If a doctor can speak freely with his patients about the diagnosis of malignancy without equating it necessarily with impending death, he will do the patient a great service. He should at the same time leave the door open for hope, namely, new drugs, treatments, chances of new techniques and new research. The main thing is that he communicates to the patient that all is not lost; that he is not giving him up because of a certain diagnosis; that it is a battle they are going to fight togetherpatient, family, and doctor-no matter the end result. Such a patient will not fear isolation, deceit, rejection, but will continue to have confidence in the honesty of his physician and know that if there is anything that can be done, they will do it together. Such an approach is equally reassuring to the family who often feel terribly impotent in such moments. They greatly depend on verbal or nonverbal reassurance from the doctor. They are encouraged to know that everything possible will be done, if not to prolong life at least to diminish suffering. If a patient comes in with a lump in the breast, a considerate doctor will prepare her with the possibility of a malignancy and tell her that a biopsy, for example, will reveal the true nature of the tumor. He will also tell her ahead of time that a more extensive surgery will be required if a