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Paper short abstract:
Situated at the margins of consciousness, patients perceived as unresponsive are in a liminal state, where their personhood is constructed in entanglements of medical technologies, fragments of life history, and through glimpses of contact as assessed by health care professionals and relatives.
Paper long abstract:
The intensive care medical environments of patients with unresponsive wakefulness syndrome (UWS) and minimally consciousness states (MCS) demarcates a liminal space. Simultaneously it is ensuring and stabilizing the lives of patients with ambiguous states of consciousness and facilitating the assessment of consciousness and its potential progression in such patients.
Based on an extensive anthropological fieldwork in a highly specialized intensive care unit, providing early neuro-rehabilitation treatment, we have followed health care professionals' (HCP) interactions with patients with severe brain injury in ambiguous states of consciousness. Their assessments of patients blend clinical observations, cognitive scores, biomedical test results and responses to medical treatments and continuous technological monitoring of patient vital signs, as well as more subtle sensory valuations. Further, it engages relatives' and HCP's experiences of relevant response or sense of (not) being in contact with the person. Added to this, fragments of life and family history provide context for weighing the potential of a progression of consciousness and rehabilitation, constituting what is understood as the personhood of the patient.
The search for consciousness can result in an experience of response, like a requested movement of an arm. The interpretation of these moments, sometimes named as 'islands of consciousness', draw on all the above mentioned cues for assessment forming particular understandings of 'who' this patient is. Signs of consciousness are in this way both shaped by and shaping the construction of personhood in such patients. This raises discussions of the constitution of personhood as a social practise relating consciousness with intention.
Rethinking margins through personhood
Session 1 Wednesday 22 July, 2020, -