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Family Experiences of Vegetative and Minimally Conscious States

Recovery

Most of the people who spoke to us had relatives who remained in a vegetative or minimally conscious state (or died without ever regaining full consciousness). In some cases, though, the patient regained full consciousness.
  • We spoke to a couple of people whose relative had recovered consciousness very early on after injury - within a few weeks. Although still brain injured, these relatives were now able to communicate, eat and be semi-independent. (See our section on– ‘Londoners’ experiences of life-changing injuries’ for examples of what recovery can mean for patients who ‘wake up’ relatively soon). 
  • We also talked to some people whose relative had recovered full consciousness even though they had been first vegetative and then minimally conscious for a much longer time.

The length of time someone has been in a coma-like state is one crucial predictor of recovery potential. The range of possible outcomes narrows in the early weeks, but doctors often say “only time will tell” where the patient will be along a spectrum of disability. 

The general rule is that most recovery will happen within the early months and that people who have been vegetative for a long time have less potential for recovery than those who have been minimally conscious (for more see our section on ‘Definitions’). In addition those with oxygen deprivation (‘anoxic’) injuries generally have worse outcomes, and these are easier to predict early, than those with ‘traumatic’ injuries.

All the same, some patients do recover much better than expected. We talked to one woman whose son was misdiagnosed as vegetative, and she talked of her pride in him for ‘proving the NHS wrong’ as he continues to make progress and she believes is now emerging from high level minimal consciousness into full consciousness. We spoke to another family who say they were told that their brother/brother-in-law would “always be a vegetable”. He is now living at home with his family, who are very pleased with his progress.
 

Theo can show emotion and understanding, he sometimes tries to talk and, can communicate discomfort.

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And the first question I want to ask is, how is your brother?

Peter: He’s doing really well, he came home on May the twenty-first, nearly two years ago, and he’s come on leaps and bounds. He’s got to the stage now he understands what’s going on. You write things and he reads it off the board. And he’s got his own mind. Like if somebody upsets him – what did [Name] do one day, told him off, and he…

Andrew: Two fingers.

Peter: He went up like that, went up like that.

Andrew: On his own accord, no one told him to do anything.

Peter: Yeah, he showed his emotion. And then afterwards she said to him, “No, [Theo], show me peace instead.” And then he turned his fingers around and went peace [laughs]. So he shows he’s got emotions and he understands it.

And can he talk at all?

Peter: No, he can't talk. That’s the – half the battle, isn't it, Olga?

Olga: That’s the frustration for him.

Peter: My brother, you see deep down he wants to talk.

Peter: You know, he, he gets so frustrated, sometimes he just – 

Andrew: He moves his mouth – when he wants to talk his mouth is going up and down and nothing is coming out and you can see the frustration in his—

Olga: Yeah. 

Andrew: his face, you know. 

Olga: Yeah, and you know the other day – what day was it when he was really agitated —

Peter: A couple of days ago, wasn’t he?

Olga: Yeah.

Peter: Yeah.

Olga: And, you know, how he was – I never seen him like that. It was so bad the other day. And we were asking him, “What’s wrong, [Theo] Are you in pain?” “No.” We write things on the board. “Are you in pain?” “No.” “Have you...” he was sort of pointing his mouth, going like this. And I said, “What, have you got toothache?” “No.” “What about your tongue? Is your tongue hurting you?” “No.” So everything he was saying no but then, you know, what we realised, because he was still going with his mouth like that, and one of the carers that were trying to see in case there’s anything wrong with his mouth, so they were trying to wipe his mouth. And he took the tissue and put it straight in his mouth. And we thought, [Name] what are you doing? We thought he was going to eat the tissue. But instead when he pushed the tissue into his mouth and took it out, inside it was bleeding. 

Peter: So he…

Olga: He was trying to tell us, and he got really, really angry, because he was like, it is this there, you know. It was unbelievable.

Peter: Hmm.

Olga: You know, but, you know, he said – afterwards he said he had a headache, so they gave him paracetamol to calm him down.

Peter: And because of the pain and whatnot I went and got some Bonjela which helped a little bit. But we gave him some diazepam as well, just to calm him down.

Andrew: So he wouldn’t take the Bonjela until I tried it. I had to put some on my, you know, [smacks lips] and I went like that, and then he accepted it off the carers.

Olga: Yeah. And you know sometimes when it’s dripping and, you know, we say to him, “[Theo], try and swallow it.” If you keep on telling him that—

Peter: He tries now.

Olga: He does that and he swallows.
Theo shows affection, can read short sentences, recall things from the past and communicate key needs. His family has faith that one day he may be able to speak.
 

Theo can enjoy playfully arm wrestling with his brothers. He is able to read short sentences, and be helped to choose his own clothing.

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Andrew: And he arm wrestles with us. Right.

Olga: Hmm.

Olga: He beat you [laughs].

Andrew: And I said to him, “One day I’m not going to let you win, [Theo],” right, and he was pushing away and all of a sudden this whole shoulder on the side that doesn’t move, it went up in the air like that, his whole arm went up like that, using all his strength. But subconsciously, I don’t think he knew that he’d done that, because it went up so – and normally he can't move that. But the adrenalin—

Peter: Yeah.

Olga: Yeah.

Andrew: Of, you know, because adrenaline is good.

Peter: Yeah.

Olga: Yeah. You really know – even when he sleeps, sometimes he does – he stretches it out like that.

Peter: Or if he’s dreaming.

Olga: He doesn’t even know that he does it. 

Peter: Yeah.

Andrew: And he wakes like – when he’s half asleep and he’s going to wake up you see him stretch both arms like that and he don’t even know he’s doing it with this one.

Olga: Yeah.

Andrew: So like it’s there but it’s got to reconnect.

Peter: Hmm.

Peter: And they didn’t believe us that he could read.

Andrew: Yeah, that was another thing, his reading.

Peter: That’s – yeah, and—

Andrew: And they still didn’t believe it up to last year, did they?

Peter: Yeah.

Andrew: The HFC.

Peter: Nobody believed us, okay. The reason how we discover – we discovered it is when we started taking him home one Christmas, [Name] gave him – because I used to put things in front of him, and I could see his eyes scanning—

Andrew: Yeah, it was a Christmas card.

Peter: Yeah, it was a Christmas, a Christmas card. And that Christmas card, right, told everybody – showed everybody that he’s – he does know how to read. Because he gave him the card, he looked at it – as long as it’s not too many words, big sentences and that, he read it. And once he’d finished he went, [sighs] and then looked at him, like that. And then I knew he could read. And trying to convince even the psychologist, they didn’t believe, they didn’t believe our staff, what they were telling him, that [Theo] does this and [Theo] does – even when we go to physio he can point in the direction to go to where we’re going to go.

Andrew: And he picks his own shoes – like when they dress him in the morning, he picks his own shoes, like they put—

Olga: And clothes.

Peter: Clothes, all—

Andrew: Trainers in front of him, and he’ll look and he’ll, he’ll pick what he wants. T-shirts is the same.

Peter: And he matches the colours.

Andrew: And he tries to – yeah, he tries to match—

Olga: Yeah, most of the time he doesn’t.

Andrew: Last year I bought six shirts, t-shirts. The first four it was a thumbs up, but the ones that he didn’t like it was a thumbs down [laughs].

Peter: [Laughs] and he’s trying to convince him to take them, and he wouldn’t take them.

Andrew: Yeah, and I said, “Well, can I have them?” And he went [laughs] – so [laughs] – but he does—

Peter: But he does, he does get frustrated, because a few weeks ago when we were going to go physio, all of a sudden he just went all angry and he was pulling things off, we thought he was going to pull things off and everything. And what do you think – we worked it out eventually, it took a little while—

Andrew: Didn’t like the t-shirt [laughs].

Peter: The t-shirt he chose, he decided he didn’t like it.

Olga: Yeah.

Peter: And he couldn’t tell us but now after when we—

Olga: he was pulling the t-shirt up

Peter: yeah, yeah. When—

Olga: And we were pulling it down, because you know the—

Peter: The PEG.

Olga: The PEG. 

Peter: Yeah, we thought he was trying to—

Olga: We thought he was going to pull that off. So we were pulling the t-shirt down and he was pulling it up and, and then eventually we worked it out.

Peter: We worked it out, we showed him a couple of t-shirts, he chose the one he wanted, took that one off, put it on, he was calm.

Olga: Yeah. 

Peter: It’s amazing how far he’s got his own mind, you know.
 

Theo can become frustrated - and seems upset about not being able to walk or talk, but his family have ways of calming him down. For example, Theo enjoys looking at photographs.

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Andrew: They do something and he gets angry, he does get over it.

Olga: He, he gets upset as well. Sometimes he might by accident with his hand, he might hit one of the carers—

Peter: Yeah, he doesn’t mean it. I mean, you know—

Olga: He doesn’t mean it, but, you know, he – afterwards he gets upset.

Peter: It’s frustration.

Olga: Then he says sorry to them. 

Andrew: And sometimes he gets angry with us as well.

Peter: Hmm.

Olga: Yeah.

Andrew: But, you know, like I kiss him on the head and I say, “[Theo], cool down,” and he does – eventually we get round to it.

Peter: The other thing he likes is I take videos of things and we got – my niece has just had a little boy. And if I show him clips of that, clips of himself, and he’ll actually sometimes – because it’s on the, on the card as well now, and I can just flick it up and down and I say to him, “Come on then, [Theo] you press.” And he picks some of the old stuff that we – in previous videos we’ve got, and he loves that. And then it calms him down, and he’s happy.

Olga: But you know one of the pictures Peter had on his mobile and he went to show him, as soon as he saw it, [slapping noise]—

Peter: No, no, no, my other – one of our nieces came a few weeks ago and she did a selfie with him. And I went on Facebook and – because he likes me to go on Facebook, and he likes to – when I go, spinning through, seeing things. And he likes to see the crazy videos as well on Facebook, right. And it happened to – the picture came up of her – him and her, and straight away he went [muffled banging noise] like that. He went like that [laughs]. He said, “It’s me.”

Peter: No, it’s the physical that he wants – it’s the physical side that frustrates him. 

Andrew: Yeah.

Peter: He really wants to walk and he wants to talk.

Andrew: Yeah, that’s, that’s number one and number two.

Peter: That’s the one frustration. And sometimes like you said, when he gets angry, he’s trying to get out of the bed, he’s hanging on the edge of the bed sometimes, he’s putting his leg over, trying to get out. And we’re telling him, “You can't get up,” you know.

Olga: But, you know, every day when I go to see him in the morning, I talk to him in our language as well. And I said, [Greek word], that means good morning. And he tries to do with his mouth, he says—

Peter: With his tongue.

Olga: Sometimes he forgets to do the lips. And I says to him—

Peter: [Greek word]

Olga: “[Theo], don’t forget to do it with your lips as well.” And he goes like…you know, he – I see him, he tells me, but it doesn’t come out, the voice, it’s just the voice is not there, that’s all. 
 

Although Theo is now fully conscious – he requires 24/7 care and cannot be left alone. He has pulled out his tracheostomy tube, and sometimes his brother feels that Theo does not want to live.

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But when he’s on his own?

Peter: No, no, no, no, he can't be on his own, there has to be someone there all the time, twenty-four seven. We got a team leader and a double up. The double up helps the team leader. But they’ll always – if one’s having a break the other one has to be sitting with him.

Andrew: He’s never left alone.

Peter: But he’s never left alone.

And why is he never left alone?

Peter: Because—

Olga: Because of the trachy.

Peter: because he might cough up stuff as well, and need to be suctioned. So they have to call the team leader. So he has twenty-four hour care.

And has he ever pulled the trachy out?

Andrew: A couple of times.

Peter: Yes, yes, he has.

Olga: A couple of times? 

Andrew: Yeah, there were.

Peter: Yeah, he has a couple of times. He’s done it at the home two times.

Andrew: When he’s been depressed he’s done it.

Peter: Yeah, yeah. Usually it was at the home that he done it more, pulling out the trachy. But at the—

Do you think it’s deliberate?

Olga: You know—

Peter: Yeah.

Andrew: Yeah.

Olga: You realise with [Theo]—

Peter: Yeah, yeah.

Andrew: You know when he’s, when he’s in a – in one of them moods—

Peter: He– yeah.

Andrew: …don’t want to live.

Peter: Yeah. He wants to end things, you know, he just wasn’t to get – you know. But—
You can find stories of “miracle recoveries” in the media. But for most people who have been in a disorder of consciousness for months or years, recovery is very limited. Some families celebrate their relative’s progress, however small. Others find it very distressing even (or sometimes especially) if the person does recover full consciousness. They are shocked at the contrast between how they had imagined ‘recovery’ and what it means in practice, and they feel that the person they knew before the injury would never have wanted to live like this.

A daughter said of her mother: ‘It’s not like in a film, there was a gradual pretty horrific awakening where she sort of slowly started emerging. Physically and mentally unrecognisable from what she’d been before’. A partner said of his girlfriend “I didn’t realise how dependent she would be …And I didn’t actually realise that she wouldn’t eventually be able to go to the loo herself. …And she’s lost her speech too. And I never imagined she wouldn’t be able to eat. I never imagined she would be fed through a tube”. 

How the person feels in their current state appears to be variable – and not necessarily related to ‘objective’ assessments of their level of functional recovery. Some people can be appear relaxed and content even in a state only just above minimally conscious, others, with much ‘better’ recoveries, can appear often angry and distressed. We spoke to some people’s whose relatives were not in comas for very long, and made reasonably functional recoveries.

Henrietta’s sister was ‘a wild child’ who was fiercely independent before her riding accident and would have been horrified by living in a care home. 

“I think if [my sister] knew this was going to happen to her, I think she'd have had a huge tattoo across her chest and said: ‘Do Not Resuscitate’. And then she could have just died quite gracefully, on the field, after flying through the air with her hair wafting in the wind on the back of one of her favourite horses. I think [she] would be really quite honest with the fact that she wouldn’t want to be here. And if she knew that – ‘At the end of next week you're going to have this massive horse riding accident, what do you want?” She would say, ‘Don’t go there’. And she would have it tattooed in very big letters: Do Not Resuscitate.” 

Contrary to expectation, however, Henrietta’s sister seems quite content in her current state – not least because her memory seems to have been wiped out. The problem, says Henrietta, is not how her sister feels, but the devastating impact on other members of the family.

By contrast Leanne’s brother, who has made a good functional recovery can often be distressed. Leanne works with profoundly disabled people and comments on the difference between some of her patients who have severe brain injuries, and her own brother who, on the surface, appears to be better off: 

“You know, I've got one lad there that's profoundly more disabled than my brother, but he's happy. And I start weighing up in comparison. He's in a wheelchair. He's hemiplegic. He is dysarthric. He's got one-word sentences. But he is happy. My brother can walk, talk, looks the biz and he is fundamentally miserable. He's on so many drugs at the moment for depression. I'd say once every couple of months he wakes up and he just sobs. And my Mum can't stop him sobbing. No one can stop him sobbing and he doesn't want to live anymore. And he doesn't know why he's doing it and he misses being him at one moment of recognition.”

He ‘misses being’ him is a challenge for people who recover from brain injuries with some memory of who they were before, but if the person’s brain injuries mean they have forgotten who they were this might in some ways lead to less distress. 

‘Quality of life’, as experienced by any individual at the time, cannot be pre-judged. Research with people with severe physical disabilities (including locked-in syndrome) show that many rate their quality of life just as highly as people without such disabilities – although it may take time to come to terms with their new condition. It is, of course, impossible to ask people about their quality of life if they have no communication avenues at all – and an inability to communicate may decrease quality of life. However, observations suggest that some people are content even if they had previously said they could not tolerate such an existence, including when they cannot communicate, or at least not do so with words. 

How families feel about their relative’s recovery is influenced by how happy (or unhappy) the injured person seems to be in the present and whether or not they can remember who they were (and be distressed by this). It also links with other issues – including people’s religious or political views, their hopes for the future and the impact of caring on the whole family. A key factor for many people is their views on what their relative would have wanted – and the value they place (or not) on respecting the person’s prior expressed wishes. 

Some people focus on being proud and happy for the survivor. But they are also distressed and angry to see their relative in ‘a state he never would have wanted to be in’. Most try to ‘face each day as it comes’, but all expressed worry about the future – including problems such as long-term medical deterioration decreasing quality of life, cuts to funding to support their loved one, or simply their own ill health/old age and decreasing ability to support their relative in getting the most out of life. (For more see ‘Resources’).

Last reviewed December 2017.
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