Background Australian law and ethical debate pertaining to advance care directives presume the right of the competent patient to make and communicate informed choices about their (future) healthcare. This presumes that discussions of patient preferences about end-of-life (EOL) treatment occur, but research indicates that initiating such discussions remains problematic.
Aim To determine the perspective of patients (and families) facing life-threatening/limiting illness on discussions about treatment at the EOL.
Methods 51 hospitalised seriously-ill/dying patients, 21 with attending family (total 25) were interviewed about EOL treatment decision-making. Interviews were recorded, transcribed, then discursively analysed, noting views and justification on timing of discussions about EOL decisions.
Results Responses to issues of timing varied, from before, early, or late in the illness process, to never. The determining factor was often a predicted or actual emotional state of the patient concerned, with an assumption of potential harm intrinsic to the discussion.
Discussion Determining the timing of discussions about EOL treatment appeared problematic for participants, with competing notions of self and criteria for decision-making working to justify different conclusions. Accessing a ‘modernist’ repertoire of self (prioritising rationality), participants required patients to pass a ‘Sanity test,’ being excluded from decision-making if they did not; this sanctioned early discussions and decision-making. A ‘romanticist’ repertoire (prioritising emotionality) functioned to justify delaying discussions, with a ‘Stability test’ available to excuse patients from decision-making.
Conclusion The co-existence of the modernist and romanticist repertoires and associated Sanity/Stability tests contribute to the continuing ethical dilemma of holding advance care discussions about EOL treatment.
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