Family Experiences of Vegetative and Minimally Conscious States

Taking in information and imagining outcomes

A few of those we spoke to felt they had been able to fully comprehend what doctors were telling them in intensive care, and to confront the possibility that their relative, if they survived, might be left in a severely injured state. 

But most people said they had not fully understood the situation, or felt it had not been properly explained to them, and they had not had a chance to ask questions. They also often emphasised the sense of unreality about the whole situation, when the injury was so sudden.
Sometimes they couldn’t remember doctors telling them anything about the possibility of survival in a vegetative or minimally conscious state. Others had been unable to process the information, or to imagine what that might mean. Some said they had faith that their relative would defy the odds and were sometimes angry that anyone would suggest otherwise.

People also described how their ability to listen to and take in information was undermined by exhaustion and shock, or that they were lost in an alien world of bleeping machines, specialist medical terminology and confusing statistics about risks and outcomes. They also sometimes thought they had not wanted to take on board the situation. 
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People talked about how little they had understood about what being ‘severely disabled’ might mean for their relative. They focused simply on trying to ensure that the person did not die without thinking about the level of disability that might lie ahead. They made comments such as: 
  • ‘you know its critical – life or death, that’s all you’re thinking about, you don’t imagine this, this in-between’ (Thomas)
  • ‘You just want them to make your little girl better again. You have no idea what lies ahead’ (Rhiannon) 
  • ‘I couldn’t imagine this, I didn’t know that this existed ‘ (Bea)
  • ‘I thought if he was going to die that he would have died there and then. I didn't know you could be alive like this.’ (Mikaela).

Although some doctors had cautioned them that the outcome for the patient, if they survived, could be very poor, for most, the vegetative or minimally conscious state was entirely outside their experience. As Rhiannon said:

‘In the beginning, I just thought, when she wakes up properly, she's going to be as she was …or that she would maybe have a limp, or she would stutter, or there would be something like that. I never, for one moment, thought that she would be completely paralysed, you know, and not able to talk. Not able to eat or drink or ...you know? That just wasn't — A disability, yes, you know, but not – you know, nothing on this scale…’ 
Families are sometimes consulted as if they should be able to make decisions in this situation. Some families did indeed feel equipped to do so, but many others did not because they were simply unable to take in what it might mean if the person survived in a vegetative or minimally conscious state – or they lacked information about the range of outcomes. Looking back they made comments like ‘if only I had known then what I know now’, or ‘if only the doctors had sat us down and talked it through with us more’.

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