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patient communication about imminent death
Results: "False optimism about recovery" usually developed during the (first) course of chemotherapy and was most prevalent when the cancer could no longer be seen in the x ray pictures. This optimism tended to vanish when the tumour recurred, but it could develop again, though to a lesser extent, during further courses of chemotherapy. Patients gradually found out the facts about their poor prognosis, partly because of physical deterioration and partly through contact with fellow patients who were in a more advanced stage of the illness and were dying. "False optimism about recovery" was the result an association between doctors' activism and patients' adherence to the treatment calendar and to the "recovery plot," which allowed them not to acknowledge explicitly what they should and could know. The doctor did and did not want to pronounce a "death sentence" and the patient did and did not want to hear it.
Conclusion: Solutions to the problem of collusion between doctor and patient require an active, patient oriented approach from the doctor. Perhaps solutions have to be found outside the doctor patient relationship itself for example, by involving "treatment brokers."
See also Education and debate p 1400Almost all patients with cancer want to know their diagnosis and most patients also want to be informed about the chance that they will be cured.1 This does not imply that these patients want to hear the really bad news about their condition. Many patients, when they fear that their prognosis is rather poor, do not ask for precise information and do not hear it if it is provided by the doctor. 2 3 Our study started from the observation that, after their first course of chemotherapy virtually all patients with small cell lung cancer in a university hospital programme showed a "false optimism" about their recovery, in the sense that the patients' interpretations of their prognosis were considerably more optimistic than those of their doctors. It was not unusual for a patient to tell relatives and friends that the doctor had informed them that they were cured, when actually the cancer was not cured and the life expectancy of these patients was a maximum of two years.
We explored the reasons why virtually all these patients showed this false optimism. This topic is important because patients' ideas about their prognosis affect the choices they make regarding their treatment and end of life care. 4 5 Initially we assumed that features of the communication between doctors (and nurses) and patients had caused this conflict between actual prognosis and what these patients seemed to believe. We examined which aspects of communication between doctors (and nurses) and patients contribute to the fact that patients do not know their poor prognosis. We studied in actual practice what information was given and what information was received and the effects on decision making about treatment and end of life care.6The researcher (AT) initially carried out a study on the role of nurses in decisions concerning euthanasia on a ward for lung disease.7 Only the final phase of euthanasia could be observed, however, because the preparatory process had usually taken place in the outpatient clinic. To determine the handbag Hermes copy moment when patients begin to talk about euthanasia and to investigate comprehensively the subsequent process we also had to make observations in the outpatient clinic. During observations in the clinic it became apparent that patients there rarely dealt with their approaching death. In the waiting room, terminal patients with a maximum life expectancy of a few months said that the doctor had told them that they were cured. They were making plans for the future. In this way, by spending much time observing at the clinic and by focusing on the context of euthanasia, AT discovered the widespread occurrence, familiar to doctors and nurses, of false optimism about recovery. She also discovered that those concerned in the treatment of these patients in daily medical practice considered this false optimism to be a more important problem than euthanasia.
We designed a qualitative observational (ethnographic) study to discover and explore factors in the communication between patients and staff (doctors and nurses) that contribute to false optimism. 8 9 Data were collected through (full time) observation of patients in the lung diseases ward and clinic of a university hospital. After obtaining consent from patients, AT attended their outpatient clinic consultations, had informal conversations with patients and relatives in the clinic waiting room, accompanied them to x ray and other hospital services, and also conducted more formal interviews with patients and staff. On many occasions patients were visited at home, particularly in the terminal phase of their illness when they had stopped attending the outpatient clinic. Funerals were attended and a small number of bereaved spouses interviewed.
In a first stage (1992 4) the researcher (AT) observed a group of 17 patients from initial diagnosis to their death. The size of the sample was based on AT's experience that it was not possible to keep intensive contact with more than about 15 patients and their families. After an initial analysis of the data collected in this first copy handbag Hermes stage, in a second stage (1995 7) a group of 18 patients was observed from initial diagnosis to their death. Data from this second group of copy Hermes Kelly handbag patients confirmed and specified findings from the first group.
From the start of both stages of data collection all new patients with a diagnosis of small cell lung cancer were asked to participate and to give their informed consent. The procedure was approved by the ethics committee. Only two eligible patients were not approached because they avoided any contact with the researcher (AT) from the outset. All approached patients gave their consent to be observed and interviewed and agreed to publication of anonymised extracts of observations and conversations in which they participated. Selection bias cannot be excluded but is unlikely. Participants' ages ranged from 45 to 70 years, and most Hermes handbag fake (28) were men. Most of them were or had been heavy smokers, had attained a relatively low level of education, and had been employed in heavy physical work. All patients had received a first course of chemotherapy. Most of them received further courses after recurrence of the tumour. Radiotherapy was given only as a second or third line treatment in 13 cases, sometimes in combination with chemotherapy.
Box 1 : Bad news consultation
Mr G and his wife come to see the consultant for the results.
"We talked on Monday after the bronchoscopy," says the consultant, "and I told you then that I was almost certain that there is a tumour in your lungs. That's how it looked. And, unfortunately, I must tell you that the lab tests have shown that it is cancer."
The consultant pauses, with a serious expression on his face.
Mr G closes his eyes. "How long have I got, doctor?"
"The type of lung cancer you have is very aggressive. It grows very fast. On the other hand and that's an advantage if I may say so this type of cancer is very sensitive to chemotherapy. It can certainly be treated. We can offer you treatment with chemotherapy, and I would definitely advise you to accept it. If we don't do anything, without treatment it could soon be over. In two or three months it could be the end. With therapy you must think in terms of years. It's difficult to say at this moment how long. It depends on so many things, for instance, how you respond to the therapy. We must wait and see how it develops before I can say anything definite."
After a short pause, the consultant continues, "At this moment we don't know whether it has spread. That must be investigated. But I can tell you that malignant cells have been found in the lymph glands. However, whether it has spread or not makes no difference to treatment. The advantage of chemotherapy is that it goes through the whole body."
"I want to try everything," interrupts Mr G, "Everything. I cannot leave her behind." He looks at his wife.
"We'll fight it together," says the consultant encouragingly, "However, I must tell you a few things about the treatment. Chemotherapy has side effects. Your hair will fall out. You might feel sick. But we can give you something for that. The therapy also affects your blood, and before we can give you any new treatment your blood must be healthy again. Treatment will be given in five sessions. Each time you will have chemotherapy."
Results: "False optimism about recovery" usually developed during the (first) course of chemotherapy and was most prevalent when the cancer could no longer be seen in the x ray pictures. This optimism tended to vanish when the tumour recurred, but it could develop again, though to a lesser extent, during further courses of chemotherapy. Patients gradually found out the facts about their poor prognosis, partly because of physical deterioration and partly through contact with fellow patients who were in a more advanced stage of the illness and were dying. "False optimism about recovery" was the result an association between doctors' activism and patients' adherence to the treatment calendar and to the "recovery plot," which allowed them not to acknowledge explicitly what they should and could know. The doctor did and did not want to pronounce a "death sentence" and the patient did and did not want to hear it.
Conclusion: Solutions to the problem of collusion between doctor and patient require an active, patient oriented approach from the doctor. Perhaps solutions have to be found outside the doctor patient relationship itself for example, by involving "treatment brokers."
See also Education and debate p 1400Almost all patients with cancer want to know their diagnosis and most patients also want to be informed about the chance that they will be cured.1 This does not imply that these patients want to hear the really bad news about their condition. Many patients, when they fear that their prognosis is rather poor, do not ask for precise information and do not hear it if it is provided by the doctor. 2 3 Our study started from the observation that, after their first course of chemotherapy virtually all patients with small cell lung cancer in a university hospital programme showed a "false optimism" about their recovery, in the sense that the patients' interpretations of their prognosis were considerably more optimistic than those of their doctors. It was not unusual for a patient to tell relatives and friends that the doctor had informed them that they were cured, when actually the cancer was not cured and the life expectancy of these patients was a maximum of two years.
We explored the reasons why virtually all these patients showed this false optimism. This topic is important because patients' ideas about their prognosis affect the choices they make regarding their treatment and end of life care. 4 5 Initially we assumed that features of the communication between doctors (and nurses) and patients had caused this conflict between actual prognosis and what these patients seemed to believe. We examined which aspects of communication between doctors (and nurses) and patients contribute to the fact that patients do not know their poor prognosis. We studied in actual practice what information was given and what information was received and the effects on decision making about treatment and end of life care.6The researcher (AT) initially carried out a study on the role of nurses in decisions concerning euthanasia on a ward for lung disease.7 Only the final phase of euthanasia could be observed, however, because the preparatory process had usually taken place in the outpatient clinic. To determine the handbag Hermes copy moment when patients begin to talk about euthanasia and to investigate comprehensively the subsequent process we also had to make observations in the outpatient clinic. During observations in the clinic it became apparent that patients there rarely dealt with their approaching death. In the waiting room, terminal patients with a maximum life expectancy of a few months said that the doctor had told them that they were cured. They were making plans for the future. In this way, by spending much time observing at the clinic and by focusing on the context of euthanasia, AT discovered the widespread occurrence, familiar to doctors and nurses, of false optimism about recovery. She also discovered that those concerned in the treatment of these patients in daily medical practice considered this false optimism to be a more important problem than euthanasia.
We designed a qualitative observational (ethnographic) study to discover and explore factors in the communication between patients and staff (doctors and nurses) that contribute to false optimism. 8 9 Data were collected through (full time) observation of patients in the lung diseases ward and clinic of a university hospital. After obtaining consent from patients, AT attended their outpatient clinic consultations, had informal conversations with patients and relatives in the clinic waiting room, accompanied them to x ray and other hospital services, and also conducted more formal interviews with patients and staff. On many occasions patients were visited at home, particularly in the terminal phase of their illness when they had stopped attending the outpatient clinic. Funerals were attended and a small number of bereaved spouses interviewed.
In a first stage (1992 4) the researcher (AT) observed a group of 17 patients from initial diagnosis to their death. The size of the sample was based on AT's experience that it was not possible to keep intensive contact with more than about 15 patients and their families. After an initial analysis of the data collected in this first copy handbag Hermes stage, in a second stage (1995 7) a group of 18 patients was observed from initial diagnosis to their death. Data from this second group of copy Hermes Kelly handbag patients confirmed and specified findings from the first group.
From the start of both stages of data collection all new patients with a diagnosis of small cell lung cancer were asked to participate and to give their informed consent. The procedure was approved by the ethics committee. Only two eligible patients were not approached because they avoided any contact with the researcher (AT) from the outset. All approached patients gave their consent to be observed and interviewed and agreed to publication of anonymised extracts of observations and conversations in which they participated. Selection bias cannot be excluded but is unlikely. Participants' ages ranged from 45 to 70 years, and most Hermes handbag fake (28) were men. Most of them were or had been heavy smokers, had attained a relatively low level of education, and had been employed in heavy physical work. All patients had received a first course of chemotherapy. Most of them received further courses after recurrence of the tumour. Radiotherapy was given only as a second or third line treatment in 13 cases, sometimes in combination with chemotherapy.
Box 1 : Bad news consultation
Mr G and his wife come to see the consultant for the results.
"We talked on Monday after the bronchoscopy," says the consultant, "and I told you then that I was almost certain that there is a tumour in your lungs. That's how it looked. And, unfortunately, I must tell you that the lab tests have shown that it is cancer."
The consultant pauses, with a serious expression on his face.
Mr G closes his eyes. "How long have I got, doctor?"
"The type of lung cancer you have is very aggressive. It grows very fast. On the other hand and that's an advantage if I may say so this type of cancer is very sensitive to chemotherapy. It can certainly be treated. We can offer you treatment with chemotherapy, and I would definitely advise you to accept it. If we don't do anything, without treatment it could soon be over. In two or three months it could be the end. With therapy you must think in terms of years. It's difficult to say at this moment how long. It depends on so many things, for instance, how you respond to the therapy. We must wait and see how it develops before I can say anything definite."
After a short pause, the consultant continues, "At this moment we don't know whether it has spread. That must be investigated. But I can tell you that malignant cells have been found in the lymph glands. However, whether it has spread or not makes no difference to treatment. The advantage of chemotherapy is that it goes through the whole body."
"I want to try everything," interrupts Mr G, "Everything. I cannot leave her behind." He looks at his wife.
"We'll fight it together," says the consultant encouragingly, "However, I must tell you a few things about the treatment. Chemotherapy has side effects. Your hair will fall out. You might feel sick. But we can give you something for that. The therapy also affects your blood, and before we can give you any new treatment your blood must be healthy again. Treatment will be given in five sessions. Each time you will have chemotherapy."
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