‘They don’t want to give people bad news’: a qualitative exploration of the potential of prognostic indicators for initiating and supporting difficult conversations at the end-of-life

Background: There is increasing evidence that patients with incurable cancer approaching the end-of-life, their carers and clinicians want to know how much time is left to live. Prognostic models can help with planning for the end of life and sorting out affairs, but we know very little about the acceptability of the models to patients, carers and clinicians. Method: Semi-structured interviews were conducted with a purposive sample of 29 patients, 20 carers and 32 clinicians who took part in a large validation study of prognostic models, to find out how acceptable they are. Interview data were entered into NVivo 10 and analysed using the five stages of Framework Analysis: (i) familiarisation, (ii) developing a thematic framework, (iii) indexing, (iv) charting, and (v) mapping and interpretation. Findings: The use of prognostic models was acceptable to patients and carers, and largely acceptable to clinicians. There was marked discrepancy however between the wishes of patients and carers for prognostic discussions, and the willingness of clinicians to initiate and conduct these conversations. Clinicians’ reluctance was founded on the dual principles of working in patients’ best interests and doing no harm, but was at odds with what patients and carers actually wanted. Conclusion: Prognostic models such as PiPS may be a useful adjunct to clinical decision making, but also a helpful tool for initiating difficult conversations at the end of life. In order to conduct these conversations skilfully, communication skills training tailored to end of life prognostic conversations is needed.