The nearness of the state: substitution practices at the ragged ends of life in the U.S

This essay examines two stories emerging from two different research projects, both based in Seattle, Washington (U.S.): one woman's story of her efforts to implement her husband's wishes following a stroke, and another woman's story of a failed suicide attempt by her dear friend who had been diagnosed with early-onset Alzheimer's disease. We first consider these stories in relation to the concept of substituted judgment implicit in the influential discourse of advance care planning (ACP). We then consider them in light of the concepts of 'substitution practices' and 'nearness' as developed by Mette Nordahl Svendsen. We contend that these concepts open valuable new perspectives and questions about medical decision-making and care in situations of grave impairment in late life. In particular, they help direct attention to the nearness of the state at the ragged ends of life, and indeed allow the situation of vulnerable and gravely impaired individuals to serve as a window onto what 'the state' is understood to be and do.