Awareness Contexts Revisited: Indeterminacy in Initiating Discussions at the End-of-life

Aims: To explore if and how information about a transition to a palliative care approach was communicated to patients recently discharged from hospital and who fulfilled standardized criteria for palliative care need.

Background: Palliative care philosophy and, more recently, UK palliative care policy, endorse a context of 'open' awareness, where all parties openly acknowledge that the patient's death is approaching. The perceived benefits of making the patient aware of their prognosis encompass a variety of planning activities, which mean that death, when it occurs, is arguably more in keeping with the wishes of the patient.

Design: A qualitative inductive interview study conducted in 2010-2011.

Methods: Fifteen semi-structured interviews were conducted with 15 patients and 3 family carers. All patients were identified as having palliative care needs according to standardized criteria, 3-6 months after discharge from hospital. A thematic analysis was undertaken.

Findings: Contrary to the professed ideal of 'open' awareness, some participants were only partially aware and others wholly unaware that they were likely to be approaching the end-of-life. Those identified as unaware were over 85. Participants displayed a reluctance to acquire knowledge which would require them to face the imminence of death.

Conclusion: Philosophy and policy aside, people do not always conform to the autonomy paradigm of a self-directed life followed by a self-directed death.