Exploring preferences for place of death with terminally ill patients: qualitative study of experiences of general practitioners and community nurses in England.

Abstract

To explore the experiences and perceptions of general practitioners and community nurses in discussing preferences for place of death with terminally ill patients. Qualitative study using semistructured interviews and thematic analysis. 17 general practitioners and 19 nurses (16 district nurses, three clinical nurse specialists). 15 general practices participating in the Gold Standards Framework for palliative care from three areas in central England with differing socio-geography. Practices were selected on the basis of size and level of adoption of the standards framework. All interviewees bar one had experience of discussing preferred place of death with terminally ill patients. They reported that preferences for place of death frequently changed over time and were often ill defined or poorly formed in patients' minds. Preferences were often described as being co-created in discussion with the patient or, conversely, inferred by the health professional without direct questioning or receiving a definitive answer from the patient. This inherent uncertainty challenged the practicability, usefulness, and value of recording a definitive preference. The extent to which the assessment of enabling such preferences can be used as a proxy for the effectiveness of palliative care delivery is also limited by this uncertainty. Generally, interviewees did not find discussing preferred place of death an easy area of practice, unless the patient broached the subject or led the discussions. Further research is needed to enable development of appropriate training and support for primary care professionals. Better understanding of the importance of place of death to patients and their carers is also needed.