Towards more prognostic information to patients with life threatening diseases: Why, how and when?

Physicians’ attitudes towards disclosure to patients of cancer diagnoses have changed from non-disclosure to full disclosure. Also disclosure of prognosis are likewise said to have changed, though not to the same degree. The overriding aim of this dissertation is to analyse information disclosed to patients with severe cancer prognoses, from a Swedish perspective, through two sets of interviews with patients and doctors. The aim of the first study (I) is to explore how the interviewed patients related to the information given them by their physicians. The second study (II) focuses how the information the patients received, concerning the severity of their illness, related to their awareness (or lack thereof). In the third study (III) conducted several years later, physicians were interviewed about what information to disclose to patient in (four) situations where relevant scientific knowledge is lacking or uncertain. In the fourth study (IV) the interviews, from both perspectives, were further analysed in order to explore, how the patient’s impending death is communicated.
The main finding of these papers is the discrepancy there is between patients’ desires for honest information and physicians’ reluctance to prognosticate until patients have overt signs of approaching death. The conclusion of this thesis is that, as a rule, patients should be more and better informed about their prognoses, unless the patient is clearly opposed to receiving such information or otherwise not a suitable partner for dialogue.