Making sense of absent-yet-present others: Representing the liminal vegetative state beyond life and death

Abstract

Clinically alive yet enduringly unaware, individuals in a vegetative state are caught in their transition between life and death. In turn, their carers struggle to signify the ontological and interactional dilemmas emerging from their liminal relations with an absent-yet-present other and their suspension in time. Drawing on social representations and liminality theories, this study investigates how relatives and professionals deal with these dilemmas. In doing so, the study focuses on the role of relations and time in signifying an absent-yet-present other. We analysed 65 semi-structured interviews with relatives (n = 35) and professionals (n = 30) recruited from five Italian nursing homes between February 2019 and September 2021. A discourse-oriented thematic analysis shows how carers de-anchor patients from dichotomous categories and temporalities (e.g., life/death, person/body, past/future), representing them as existing in an ontological paradox: both/neither and and/nor. The analysis also shows how carers deal with the dilemmas of interacting with a voiceless patient by engaging in collaborative identity work. On the one hand, relatives draw on – and share – memories from the patient's past to construct a ‘new identity’ and ‘present’ for their loved ones. On the other, professionals add ‘clinical identities’ rooted in medical characteristics and promote corporeal communication with voiceless patients. The study highlights how carers can signify their (shared) present, everyday caring activities, and deal with an only apparently meaningless situation by mobilising the patients' pasts and promoting a corporeal sociality.