Situated Personhood: Insights from Caregivers of Minimally Communicative Individuals

For caregivers of minimally communicative individuals, providing support in the absence of clearly meaningful responses is ethically fraught. We conducted a secondary analysis of qualitative data from caregivers of individuals who are minimally communicative, including persons with advanced dementia and individuals in disorders of consciousness. Our analysis led to two central claims: (1) Personhood is a threshold concept that is situated, relational, and dynamic and (2) in circumstances in which personhood is difficult to judge, caregivers can “fill the gap” to reach the threshold through a repertoire of strategies. Because personhood is in part an attribution from others, a situational loss of personhood does not preclude restoration, nor does it eliminate moral status.