Does it hurt to know the worst?—psychological morbidity, information preferences and understanding of prognosis in patients with advanced cancer

Abstract

Background and method: Many doctors, while offering open discussion of diagnosis and treatment to cancer patients, still express concern about the psychological impact of discussing a poor prognosis. In this study, 106 advanced cancer patients were interviewed at home. The interview included open discussion and structured questionnaires: the Hospital Anxiety Depression Scale and Rotterdam Symptom Checklist. Participants were asked about information preferences, worries and unanswered questions. The interviewer (M.B.) rated ‘Understanding of diagnosis and of prognosis’. Results: A majority of participants (78%) demonstrated a good understanding of their diagnosis and were consistent with their information preference. On prognosis, 54% of those desiring information (49% of overall group) were fully aware; a further 22% were aware but unrealistic about time‐scale. Although most were satisfied with their level of knowledge, 28% had further questions, particularly concerning ‘mode of disease progression’ (n=25), ‘mode of death’ (n=13) and prognosis (n=18). When understanding of prognosis was compared with psychological distress, a significant difference was observed between those with realistic versus unrealistic time‐scales. However, this could be explained by increasing physical symptoms. Conclusions: Patients with advanced cancer have a good understanding of their diagnosis but many do not fully understand their prognosis. Although patients with deteriorating health are more likely to be psychologically distressed, awareness of prognosis does not itself cause depression. Doctors should be aware of patients' ongoing but often unvoiced concerns and prepared to explore these with them. Copyright © 2005 John Wiley & Sons, Ltd.