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

Excerpt

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.)

These comments encapsulate some common themes in how people describe having a severely brain-injured relative in a coma-like condition, medically known as a ‘disorder of consciousness’. In the past it was highly unusual for such individuals to survive very long after the initial trauma that caused their injury. However, the emergence of modern medical technologies, and how they are deployed, has led to the creation of new long-term conditions including the ‘vegetative state’ (in which the patient shows no awareness at all) and the ‘minimally conscious state’ (in which the the patient displays some intermittent and minimal awareness). These conditions are modern phenomena – the vegetative diagnostic category was first created in the early 1970s (Jennett and Plum, 1972) and the ‘minimally conscious state’ [MCS] was only defined in 2002 (Giacino et al., 2002). Patients with disorders of consciousness disrupt previous ways of understanding life. The family may experience their vegetative or minimally conscious relative as ‘present but absent’, ‘living, but dead’, making comments such as ‘this is no life’ and ‘my son is gone’ – and experiencing a sense of loss and grief that may be ‘like a death’, although not a death.

In analysing families’ talk about death in relation to severe brain injury and disorders of consciousness, this chapter combines a social constructionist approach – addressing the way new medical technologies generate dominant definitions of death and dying – with a social constructivist approach – focusing on the agency of relatives in generating constructions of their relative in relation to the vegetative and minimally conscious diagnoses. We explore what family members’ accounts tell us about ‘ordinary understandings’ of death, the disruption of such understandings brought about by the use of medical technologies which ‘rescue’ and sustain physiological life with no (or minimal) consciousness and the ways in which family members negotiate such disruptions.