The 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 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 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 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 (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.
The analysis and results reported are based on four types of data. Firstly, the researcher (AT) made comprehensive detailed field notes of her observations of the behaviour of patients and staff, within and outside consultations, and of her informal conversations with them. Secondly, formal interviews with patients and staff were tape recorded and transcribed. Thirdly, the researcher had access to the medical and nursing records of the patients who had given consent. Fourthly, the researcher also kept an ongoing diary in which she reported her own behaviour and feelings. These data were analysed per patient, resulting in 35 case studies. Each case analysis was aimed at a “thick description”10
and explanation of the information seeking and information avoiding strategies of that particular patient and of the changes in these strategies over time from diagnosis to the terminal phase of the illness. After the individual case studies were completed, similarities and differences between cases were analysed.
Analysis of six “atypical” cases was important to achieve a more comprehensive understanding of the information seeking and information avoiding strategies of most patients. Of these six, three refused treatment and three who received treatment did not show “false optimism” (details of these patients can be found on the BMJ 's website). Two of the three patients who refused treatment were familiar with the plight of patients with incurable cancer, and the third had experienced so many other diseases and treatments that she did not want to participate in any again. The absence of “false optimism” in three patients who did receive treatment was related to their own or their children's relatively high educational level.