'This in-Between': How Families Talk about Death in Relation to Severe Brain Injury and Disorders of Consciousness

This is a chapter from The Social Construction of Death edited by Leen Van Brussel and Nico Carpentier. This chapter is available open access under a CC BY license. This chapter explores ordinary understandings of death as they are mobilised in extra-ordinary circumstances by families of individuals who are (or were) in a long-term 'coma' a vegetative or minimally conscious state. Drawing on 51 in-depth interviews, the authors adopt a social constructionist/ivist approach to explore...
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This is a chapter from The Social Construction of Death edited by Leen Van Brussel and Nico Carpentier. This chapter is available open access under a CC BY license. This chapter explores ordinary understandings of death as they are mobilised in extra-ordinary circumstances by families of individuals who are (or were) in a long-term 'coma' a vegetative or minimally conscious state. Drawing on 51 in-depth interviews, the authors adopt a social constructionist/ivist approach to explore what family members' accounts reveal about how people conceptualise the death of a person. The authors discuss the disruption of ordinary understandings of death brought about by medical technologies which sustain physiological life with no (or minimal) consciousness, and the ways in which family members negotiate these disruptions. Close attention to interviewees' accounts places abstract theorising about 'coma' (and related states) in its social, temporal and medio-legal context and shows how an appreciation of differing discourses around death can help families and clinicians engage with the challenges associated with these conditions. Such analysis can also assist in framing policy and practice including informing debates about the delivery of so-called 'life-sustaining' treatment.