{"title":"The nearness of the state: substitution practices at the ragged ends of life in the U.S.","authors":"Janelle S Taylor, Elizabeth K Vig","doi":"10.1057/s41292-025-00365-2","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":46976,"journal":{"name":"Biosocieties","volume":"21 1","pages":"83-99"},"PeriodicalIF":1.2000,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12995712/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Biosocieties","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1057/s41292-025-00365-2","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/8/19 0:00:00","PubModel":"Epub","JCR":"Q4","JCRName":"SOCIAL SCIENCES, BIOMEDICAL","Score":null,"Total":0}
引用次数: 0
Abstract
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.
期刊介绍：
BioSocieties is committed to the scholarly exploration of the crucial social, ethical and policy implications of developments in the life sciences and biomedicine. These developments are increasing our ability to control our own biology; enabling us to create novel life forms; changing our ideas of ‘normality’ and ‘abnormality’; transforming our understanding of personal identity, family relations, ancestry and ‘race’; altering our social and personal expectations and responsibilities; reshaping global economic opportunities and inequalities; creating new global security challenges; and generating new social, ethical, legal and regulatory dilemmas. To address these dilemmas requires us to break out from narrow disciplinary boundaries within the social sciences and humanities, and between these disciplines and the natural sciences, and to develop new ways of thinking about the relations between biology and sociality and between the life sciences and society.
BioSocieties provides a crucial forum where the most rigorous social research and critical analysis of these issues can intersect with the work of leading scientists, social researchers, clinicians, regulators and other stakeholders. BioSocieties defines the key intellectual issues at the science-society interface, and offers pathways to the resolution of the critical local, national and global socio-political challenges that arise from scientific and biomedical advances.
As the first journal of its kind, BioSocieties publishes scholarship across the social science disciplines, and represents a lively and balanced array of perspectives on controversial issues. In its inaugural year BioSocieties demonstrated the constructive potential of interdisciplinary dialogue and debate across the social and natural sciences. We are becoming the journal of choice not only for social scientists, but also for life scientists interested in the larger social, ethical and policy implications of their work. The journal is international in scope, spanning research and developments in all corners of the globe.
BioSocieties is published quarterly, with occasional themed issues that highlight some of the critical questions and problematics of modern biotechnologies. Articles, response pieces, review essays, and self-standing editorial pieces by social and life scientists form a regular part of the journal.
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