Planning for an (un)certain future: Choice within english end of life care

Over the last few parliaments, English healthcare policy has increasingly included neoliberal ideals nestled within the state-provided system. This has been particularly embodied through the use of the term ‘choice’. Whilst in some sectors of healthcare choice carries consumerist connotations, within the relatively new field of end of life care, it serves to mark the last chance to express autonomy once one’s inevitable fate is known.

Particularly, within the first national end of life care strategy (2008) choice represents planning the setting of one’s death – one’s preferred place of death – whilst delicately manipulating the timing and means of one’s death through descriptions of refusing treatments (thereby sidelining discussions of assisted suicide). In order to enable choice, healthcare professionals are to openly discuss end of life care with patients who may die within the next year and/or suffer from a long-term illness. In turn, patients are expected to express their preferred priorities of care (and death), which can be documented and followed.

Through ethnographic research, it is apparent that although people (including patients and professionals) generally like the idea of choice, the notion of planning and documenting choice is less desirable. Many demonstrate that it is difficult to do as an action given the importance of relationships in shaping experiences of dying and the uncertainty that surrounds death. This creates an inability to plan and therefore choose. This paper explores these issues, demonstrating that this anxiety around planning and the rhetoric of choice in this context serve to illustrate deeper unresolved concerns about morality and mortality.