Collusion in doctor-patient communication about imminent death: an ethnographic study

Abstract

Objective: To discover and explore the factors that result in "false optimism about recovery" observed in patients with small cell lung cancer.

Design: A qualitative observational (ethnographic) study in two stages over four years.

Setting: Lung diseases ward and outpatient clinic in university hospital in the Netherlands.

Participants: 35 patients with small cell lung cancer.

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."