How do patients respond to end-of-life status?

Background UK palliative care policy and philosophy endorse open awareness, where all parties acknowledge that the patient’s death is approaching. Perceived benefits of making patients aware of their prognosis include being able to plan a variety of activities, so arguably death occurs more in keeping with their wishes. Aim To explore if and how information about a transition to palliative care was communicated to patients discharged from hospital who fulfilled standardised criteria for palliative care need. Literature review Despite evidence of a link between encouraging people to talk about dying and an improved dying experience, persistent barriers exist to entering a context of open awareness. Method Semi-structured interviews were conducted with 15 patients and three family carers, 3-6 months after discharge from hospital. A thematic analysis was undertaken. Results Despite indications that participants might be nearing the end of their lives, most were unaware of their prognosis and showed little insight into what they could expect from the trajectory of their disease. Discussion Patients can be reluctant to gain knowledge that requires them to face the imminence of death. This can create tensions for nurses about how they relate to and communicate with patients facing incurable illnesses. Conclusion To ensure timely access to palliative care, new and innovative ways of delivering palliative care are needed, which do not rely on the ideologically based assumption that awareness can and should be encouraged in all cases