Abstract

Medical decision making when a patient cannot participate is complicated by the question of whose voice should be heard. The most common answer to this question is that “autonomy” is paramount, and therefore it is the voice of the unwell person that should be given priority. Advance care planning processes and practices seek to capture this sentiment and to allow treatment preferences to be documented and decision makers to be nominated. Despite good intentions, advance care planning is often deficient because it is unable to facilitate a relational approach to decision making in cases when the patient’s competence is reduced. In this article we present findings from a study of the ways in which older people and their significant others understand decision making in such circumstances. Critical to the participants’ understanding was the emergent concept of “relational knowing,” a concept that is poorly articulated in the advance care planning literature. Our findings suggest that the dominant understanding of decision making in conditions of impaired competence is incomplete and obscures much of what matters to people. We conclude that, having recognized a broader set of ethical concerns, it is necessary to develop a relational and narrative based approach that applies in appropriate settings.