That the ordinary understanding of death includes, but is richer than, the biological definition, and that people struggle conceptually over the ontological status of PermVS patients, are claims about how real people think and talk, how they conceptualise matters. Are these claims true? We pursue this question by reference to empirical data from interviews with relatives of severely brain injured patients, conducted by the second and third authors, who themselves have a severely brain injured sister. Over fifty interviews have so far been completed. Although the focus of this paper is PermVS patients, other diagnostic categories mentioned above are represented in the study, including patients whose vegetative state is persistent but not yet permanent, minimally conscious patients, and some cases of uncertain diagnosis (for example, patients whose condition is borderline between vegetative and minimally conscious).
Interviews were semi-structured; an interview schedule was used but conversations were allowed to develop naturally in unforeseen ways. Interviews were recorded, transcribed and thematically coded. Extracts quoted here have been anonymised, and names of people and places are pseudonyms. Here we focus primarily on family interviews with respondents who have accepted a PermVS diagnosis for their relative (i.e., they report believing that their relative has lost, and is extremely unlikely ever to regain, awareness of self or environment). We also draw on a second data set compiled from interviews with professionals working on disorders of consciousness—such as consultant neurologists and legal experts—using a similar protocol (except that some respondents asked to be named; of these, only one is quoted here, James Howe, and all other names of family members and professionals used in this article are pseudonyms).Footnote 13
Do the interview data reveal an understanding of death so rich and complex as to cause research participants to struggle with the ontological status of PermVS patients, in accordance with Holland’s analysis?Footnote 14 Explicitly and implicitly, interviewees repeatedly speak of patients as being alive and yet to die. Such discourse clearly concords with the biological paradigm in which death is defined as irreversible breakdown in functioning of the organism as a whole: in that paradigm, PermVS patients are still alive because they maintain integrated autonomic physiological functions. So, for example, Tania, the mother of a PermVS son (pseudonymised as ‘Charlie’), states explicitly that he is still alive despite the fact that people she had thought of as friends no longer ask about him:
- Tania::
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You know they’ll cross the road rather than speak to you and they talk about- Often they talk to me and they say “oh, how is Spencer [another son]?” or “how is your mum?” Very rarely will they ask about Charlie and I’m thinking, “He’s still alive!”
Another interviewee, Brian, implies that his relative is alive by way of contrast with his projected future death: “Yeah. While I’d be heartbroken if he died, it’s a funny- it’s like almost a- as if it would be a sense of relief if it was to happen.” Comments of this kind were so frequent as to suggest that this is a natural and familiar way for respondents to think and talk about the patients.Footnote 15
But the crucial finding is that this does not fully capture how interviewees understand the patients’ ontological state. Specifically, at various points in interviews, respondents with a relative in a permanent vegetative state struggled to explain the patient’s ontological status by refusing to speak of them as straightforwardly alive, and even explicitly talking about them as being already dead. The first representative extract presented here is drawn from a joint interview with the patient’s brother, Harry, and Harry’s partner, Natalie.
- Natalie::
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What we are convinced about is that uhm, from everything that we can find out, it is not in Zoe’s [the patient’s] best interest to be still alive. ‘Cause she’s existing. She isn’t living
- Int::
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Mm
- Harry::
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I mean there’s a line where it says clinicians are good at fixing bodies but they’re not good at fixing brains
- Int::
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Yeah. You’ve said she’s existing, not living, and I think you [Harry] said earlier she- that the Zoe you knew died 4 years ago
- Harry::
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She did, yeah
- Int::
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Uhm, how do you make sense of the body in the bed? Is she- it’s kind of between life and death somehow?
- Harry::
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No she- As far as I’m concerned- Well yeah, obviously, it’s between life and death. You’re in no man’s land, basically.
The interviewer’s phrase ‘the body in the bed’ is resonant with the experience of many family members whose relatives are in PermVS, and is used spontaneously by some interviewees, along with references to the patient as a ‘shell’ or a ‘husk’. For example, Jade comments,
It feels like it’s just a body. It’s Colin’s body being kept alive somehow. He’s not in it anymore […] It’s just a shell. It’s a shell of a body. It’s so- so damaged, the brain. I feel that it’s not Colin anymore. […] It isn’t a life. Is it even an existence?
Likewise, Rhiannon says, “We don’t want to lose them. We want to keep them here with us. But all you’re keeping is a shell.”
Brian also describes his brother’s body as a “shell”, and uses a range of other formulations to try to capture his brother’s current ontological condition: “the body’s there but the engine’s gone”; “there’s a case there and somebody’s taken the motherboard out”; and, “as the old saying goes, the lights are on but there’s nobody in”. Although Brian was quoted earlier as saying that he’d be “heartbroken if he [his brother] died”—thereby implying that his brother is not dead—elsewhere in the interview he also talks about his brother as already dead: “I don’t mean this nastily or anything else like that- but possibly to me, Aaron died the day [of the assault that led to his brain injury]”. At several points in the interview he states in quick succession both that his brother is “already dead” and that he is “not dead”; for example,
- Brian::
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He’s already dead. The only reason he’s not dead is because his heart pumps […] And we’re not sure whether he reasons because we don’t know enough. But what we do know, or what information we have got at this present time, is he’s effectively dead
This struggle to articulate what being ‘effectively dead’ amounts to emerges when Aaron is compared to friends who are ‘really dead’:
- Brian::
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I said, “So Aaron hasn’t got a life to lead. Or live.” And I suppose that is the difference between Aaron and my friends that have died, right? They’ve died. Their life’s ended, and it’s gone. Aaron is alive but he hasn’t got a life to live. I don’t know if that makes sense.Footnote 16
Another interviewee, whose mother had died after being vegetative for more than 3 years, displays similar uncertainty, on the one hand agreeing that his mother effectively died in the car crash that caused the brain injuries leading her to become permanently vegetative (such that he “didn’t believe she was really there anymore”) but also talking about how he treated her body “just in case I was wrong”:Footnote 17
- Int::
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From your point of view, did you lose your mother, did she in effect die in the accident?
- Tim::
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Yeah. Yeah. Of course it’s more comforting to think of it like that. So I suppose that that’s what I latched onto
- Int::
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So how did you relate to the body in the bed, that was –
- Tim::
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Oh well, not in a- not- (laughs) Yeah, you might think that you’d just be kind of careless or uh, or dismissive of it, but not at all. […] On the one hand I was confident and comfort- I was comfortable with the idea of withdrawing nutrition because I didn’t believe that she was- uh was really there anymore. And if she had been there she would have hated it. But on the other hand, just in case I was wrong, I would- I and everybody else involved would be- would treat her with dignity and respect and try and look after her.Footnote 18
The same uncertainty about ontological status arises in interviews with professionals working in the area of disorders of consciousness, such as court expert witnesses, including consultant neurologists. For example, we interviewed the neurologist, James Howe, who was involved with the ground-breaking case of Tony Bland which established that treatment withdrawal could be legally permitted for PermVS patients in the UK.Footnote 19 In this interview we pressed Howe on Bland’s ontological status at the point of treatment withdrawal:
- Int::
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And when you withdrew treatment from Tony Bland, you didn’t feel you were killing him? You felt he’d been killed by the Hillsborough disaster?
- Jim::
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He was already dead. Mr Bland [his father] said that he was already dead. “My son was already dead.”
- Int::
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But his heart was beating. He was breathing unaided.
- Jim::
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Yes, that’s right. Yeah.
- Int::
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How is that dead?
- Jim::
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Well, it is dead because what matters is consciousness. […] With the extinction of consciousness then the individual is dead. It doesn’t matter what your heart’s doing; it’s just a pump.
[…]
- Int::
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So for you, not being dead means being conscious, at least some of the time?
- Jim::
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Yes. Yes, that’s right.Footnote 20
Howe’s comment are so forthright that he might seem to be claiming that Tony Bland is straightforwardly dead; but he advocated treatment withdrawal precisely in order to shift Tony Bland’s ontological status to that of ‘really dead’.
In sum, evidence from interview data accumulates to support the view that our ordinary concept of death is more complex than that of a solely biological phenomenon, and this creates conceptual uncertainty about the ontological status of PermVS patients.Footnote 21