‘This in-between’: How families talk about death in relation to severe brain injury and disorders of consciousness

Abstract

It’s almost like living with a dead person. Some people say, ‘you’ve still got her’. No I haven’t. (Mother of a daughter in a permanent vegetative state, caring for her at home.) I only thought in terms of life and death ... not this, this in-between. (Father of a son, who had been in a minimal conscious state.) And I’d thought of every single possibility. But I hadn’t thought of this one. Because I didn’t even know it existed. (Sister of a woman in a permanent vegetative state.)