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.

Sonia and her mother had just spoken on the phone, before her mother had a massive stroke - it was a huge shock to see her in intensive care.

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And when we got to the hospital in the afternoon mum was in intensive care and wasn’t conscious. And had, we were told, had a bleeding stroke because she had a sort of untreatable very variable, very high blood pressure. But she’d been taking soluble aspirin for this, which meant that the bleed was that much worse, so that it had kind of spread all over the brain. And they weren’t really sure what the prognosis was but they were going to kind of maintain her in a state for that period. And it was very, very kind of ICTU, sort of situation with tubes and people and, you know, kind of slightly bizarre. But quite, quite difficult to take in, because you’ve gone from sort of speaking to somebody on the phone in the morning, who seemed slightly unwell, to actually dealing with somebody who’s completely unconscious in the early evening.

It was just before Christmas, my mum had very kindly and very much in her fashion prepared presents for the kids. And when we went to ICTU she seemed to be unconscious, but when I said, “The kids will be delighted,” her blood pressure spiked massively. So I think that when one talks about coma it’s quite clear that people can actually hear the kind of thing that’s happening.

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.

Emma could not process what the clinicians were saying.

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Can you remember what was said in intensive care beyond, “There’s nothing we can do for her?”

To be honest it was quite a long time again and I [intake of breath] – I don’t think I was really – I think I was in a sort of whirlwind of shock actually. I don’t think I listened really to what was said. You know, there’s a sort of bleed, you know, and there was a – I mean, it was a very thorough process and the – I presume she would have been a neurosurgeon, the consultant, was very good and very matter of fact I seem to remember. But I was not – I don’t think I was really aware of what she was saying, you know, to be honest. Because it was so over my head. And I know that that is absolutely the correct process because, you know, you have to tell the family exactly what is happening. But I – you know, and all the details around that, and diagnosis and subsequent prognosis I suppose.

But I wasn’t aware, I had absolutely no idea. And I don't think wanted to hear all that at the time, it was just – you – of course you can sort – of course – you know, after all that was said, you know, “yeah, absolutely, they’ll be fine, it will be all right.” [Laughs]. No [laughs]. And – but I don’t think that hit until – I don’t think that did hit until the, you know, “You have to move your mother, you know, you need to move her, these are the places that you need to look to.” That was, “All right, okay.” And, and then you have loads of questions and you don’t ever really ask them. I never really asked them. I had too many that I just – went round and round and round and round and round in my head that I never actually asked.

And I thought, that’s a fear, you know, I never asked any medical person, you just deal with the day. And it was – I suppose I possibly – in a very sort of low key, you know, “what’s going to happen,” but I never pursued it. You know, I think it’s a fear of [sighs] – it was an ostrich thing I think, I didn’t want to, I didn’t want to know the worst scenario I think. I just accepted it as what was going to happen. Had no idea of – that the – that it was going to be – her life was going to be this way and for the length of time that it was to be honest. And I wonder if you did know whether you would be any better than not knowing. I don’t know, I don’t know. It’s – I guess it depends on the person, you know, perhaps some people wish to know how long, you know, what is the level of – the quality of life of this person and people perhaps, you know, different want to know. I just – I didn’t pursue that at all.

So it was fear of—

Well, I think it was fear of knowing the worst case scenario. So if someone had said – and I don’t – possibly the medical profession can't answer that question, I don’t know. Someone – if the consultant had said, “Your mother is going to be in this state for the next three years, she will not be able to speak, she might be able to hear.” That – I don’t – that’s quite distressing, and I don’t know whether I would have wanted to know that.

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.’ (Nik).

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…’

At no point in intensive care did Mark and Helen imagine that Mark’s brother would still be in a coma-like state three years later.

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Helen: I look back on that time and think, at no point during those discussions – because I took a slightly back seat because, you know, he’s my brother-in-law, so Mark is the one who has got to decide - but at no point did anyone say that this kind of three year period was what we might be facing. He was in a coma but the expectation was that that would end. And then we would know where we were somehow. I do remember looking in the relatives’ room, and there was, sort of thank you cards and photographs. And photographs of a young man, obviously in intensive care in a sort of coma state, and then photographs of him returning in a wheelchair all smiles and that - . Somehow I thought that was the next step.

Mark: That’s where I thought we were going.

Helen: [My brother-in-law] would wake up if we spent every day by his bed, “Come on, [name], open your eyes.” But, you know, “Open them up, look at us, talk...”. But in fact, the fact that three years – sometimes he opens his eyes and sometimes he doesn’t, I don’t think that ever entered my head that this was a kind of outcome really.

David and Olivia never imagined that David’s mother might be ‘erased as a person’.

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Olivia: And I think we didn’t maybe appreciate at the time how hard they were kind of battling to save her, we were just sat in a room for – well, all of – by the time they operated probably would have been tea time-ish, early evening on the Sunday. She was in theatre for quite a long time. We’d been in hospital all that day, all that night while she’d been in theatre and we hadn’t really been told anything at that point, just that she needed to get to theatre and it was serious.

So what was the first point at which somebody told you what had happened and what might happen?

Olivia: We had a bit of a good cop, bad cop situation in intensive care, didn’t we?

David: Yeah, I would say – I suppose – well, I wouldn’t say no one came to us, but no one really – you know, they just said, “She’s out of theatre, she’s okay,” they wouldn’t – they didn’t sort of go any further into it. But one lady who was sort of looking – I can't remember, was she a nurse or was she a—

Olivia: She was a registrar. A more junior doctor.

David: Yeah. Well, she, she basically said, you know, “Your mum’s all right, she’s stable, she’s very poorly but...” and we were saying – well, our first, first things we wanted from her, you know, what’s she going to be like when she wakes up? Is she going to be this, is she going to be that? And she gave us sort of hope in a way of that she would be disabled, so we were like, right, well – you know, we were making plans afoot, we want to get her home, you know, she’s coming home. And that’s what we believed for the days onward from that. Obviously visiting and, you know, waiting for – anticipating her waking up.

And then another junior doctor basically came – we were pestering them like mad, you know, “How’s she doing? How’s she doing?” And he sat us all in and he said, “What have they told you?” “Oh, she’ll be disabled.” He said, “She’ll be severely disabled, she’s – you know, this is what’s happened.” And we were all, “Don't say that, you know, how dare you say that? She’s all right, she’s going to come through. You know, we’re going to get her home.” But basically he was telling the truth. He was just telling us bluntly that she’s, you know, she’s not going to make this one really.

But we weren’t – we didn’t give up hope at that point, because she hadn’t woken up from the sedation she’d been under. But we did have, you know, we did have a lot of hope at that point and everyone – I knew she was damaged, you know, damaged beyond sort of coming back to anything that she would be, but I didn’t think this – the vegetative state, I didn’t think that.

Olivia: I think when somebody says to you severely disabled—

David: Yeah.

Olivia: a vegetative state is not the first thing—

David: I think like electric wheelchair and being able to, you know, you know, maybe not have any bodily function but still be there, you know, as a person.

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’.

Last reviewed December 2017.