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Family Experiences of Vegetative and Minimally Conscious States

Hope

Having a relative or close friend in a vegetative or minimally conscious state is hugely distressing. Hope was very important to everyone we spoke to. It was valued as helping people to cope and keep going in their battle to support any recovery possible – as Morag said “we just kept saying ‘where there is life there is hope’”. People defended their right to hope and were angry with clinicians who gave information with might ‘steal’ hope. Some also talked about how their hope had allowed them to not to give up on a patient who later did show signs of consciousness. Without hope people felt that the situation was unbearable. But people have different time scales for when they think ‘hope’ is justified and what to hope for. Hope was also sometimes seen as a problem – helping to trap the whole family in a hopeless situation or leading to inappropriate treatment of the patient. 

Rifat and her family gave up hope for any meaningful recovery for her father after learning that he had been without oxygen for a long time. She wishes her father had not been resuscitated and feels that he ‘really died’ in the moment of his cardiac arrest as her sister was bringing him a glass of water. Others kept hoping for many months or years – especially if they saw any signs of possible consciousness, although some worried about what recovery might mean.
 

Although she wonders if he is staying alive long enough to hear she has got her PhD, Rifat does not think her father will make any meaningful recovery.

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And you still think your father might get better?

No, I don't think, no, [laughs] it’s just something, because he is still alive, we are just – I’m just telling you that probably he will wake up and say hello. But no, in a rational sense, I don't think he will get better. I was telling my sister that my dad is waiting for me, and my sister said to me, “No, nothing is like that, he is just there. He is just there. Because he is not- He was taken off in front of me and then all sorts of messy things came and now he is here. He is not waiting for anything. He is not waiting for your viva; he is not waiting for anything. A person can only die once. He died when I was bringing water. Now we revived, so it’s our choice, it’s human beings choice.” We don't think that he will get any better. If he got any better we could have – I think we could have seen some sign in this more than two months.
 

Jim never gave up hope, but it was also a relief when his wife died after a few months. He was worried that she might not recover a quality of life acceptable to her.

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We noticed – I mean, whether that's a wrong interpretation. I mean, when you're in that state and you've seen her, that all she could do is that, and then you see daylight. Whether it's false hopes, I don’t know. Same as when she started making grunts and squeals. The fact a noise was coming out of her mouth, as opposed to being dead silent, whether our interpretation of it as a sign of improvement, who's to say? But that was our interpretation.

And it was clearly different.

Yes, it was different to what – we'd had weeks of Amber just laying there. You know, and as I say, I never gave up hope until the day I was told Amber had passed away.

So when she died, was that – I mean, in one sense you knew she didn’t want to be kept alive if she had to be resuscitated. On the other hand, you hadn’t given up hope that she might recover.

Yes.

So you must have felt conflicted?

I was. Until I was told she'd passed away. I'll be quite frank. It was a relief. Because I had – I had doubts that even if Amber had survived, if she couldn’t recover – or if she didn’t recover 90% plus, I don’t think she would have been a happy bunny. She was such a vibrant character that I don’t think she would have been happy. And as I say, when I got the phone call to say that she'd passed away, it was a relief. 

Right there and then?

Yes.

Despite the fact you hadn’t given up hope?

Yes. I hadn’t given up hope until that second. Although I had reservations as to what quality of life – and it's her life, not my life. 

So you would never have – you mentioned earlier the court cases that people have taken to get treatment withdrawn – 

Yes.

You wouldn’t have started that yourself, because you hadn’t given up hope?

No. 

So you wouldn’t have tried to withdraw treatment?

No.

But a natural death, out of your hands, was a relief?

Yes. It's a very delicate balance. Between okay, – I mean, don’t get me wrong, I know – we knew what we wanted as a quality of life, and it was safe to say that with Amber laid there like she was, that wasn’t the quality of life she expected. But by the same token, because Amber couldn’t communicate in any shape or form, I never gave up hope because of our past experience of [name] and [name]. They were two people who were written off. Whether it be right or wrong, I thought they were in a worse state than Amber ever was, because Amber wasn’t on a life support machine. Now that – the interpretation of that might be wrong in that fact that Amber was on permanent oxygen supply and the only method of feeding and administrating medication was through the PEG. But when you've seen or know of two people who were written off for several months and then you see them like they are today, you keep faith. 

Yeah, I can see that. 

So I never gave – and my friends never gave up hope that Amber would survive. Although we didn’t know to what extent, and whether Amber would have been happy to make the most of her life in that diminished state, who knows?

So the decision was taken out of your hands, she died.

Yes.

And that was the relief.

And it was a relief. 
Many of those we interviewed continued to have hope for their relative’s recovery several years after the original injury. 

As time goes on it becomes less and less likely that a patient in a vegetative state will regain full consciousness – but this can be complicated by the patient’s medication and dependency on different technologies (such as artificial ventilation). Families reported that they sometimes had to fight hard to ensure their relative had received appropriate care and assessment, and they wanted to be sure that hope for recovery was not abandoned too soon (see the ‘Permanent’ diagnosis’.)

When we first interviewed some people they were still fighting to ensure appropriate care for their relative to allow them to be properly assessed and were unsure what level of recovery might be possible – but when we re-interviewed them two or three years later, most felt the range of outcomes was now clear.
 

When Angela first spoke with us in 2012 she hoped her husband might recover enough to come home. 2 years on she no longer thought this was realistic.

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And it sounds like – I think when we spoke to you a couple of years ago, you didn’t feel you’d lost him, you felt there was still hope. And now it’s you do – maybe – do you think you’ve accepted – what’s got you to the place you’re at now?

I don’t have much choice. I’m a realist. I – you know, the social worker in the rehab hospital said to me, “You’re quite sensible about this kind of thing,” you know, and [laughs] she said, “We have families coming in here saying, no, he’s coming home, no, he’s coming home.” And I said, “Well, of course I want him to come home, but if that’s not possible it’s not possible. And until I know it’s not possible for sure, of course that will always be a hope in the back of my mind.” I think from the very beginning, I kind of knew, but I couldn’t – I wasn’t ready and he wasn’t ready. Until he had the assessment. And once I knew that that was the next thing that’s what I aimed for. And so I had that to focus on. And, and their assessment was that he was vegetative, minimally conscious.

So did the SMART test damage your hope, make you become more realistic? What—

No, I [sighs] no, no it didn’t. I – because I was there for it and I could see what they were trying to, to illicit from him. And I could see that it wasn’t forthcoming. So it didn’t surprise me. Because we had been kind of working with him ourselves, trying to illicit a response. And – any response at all – and failing. Their system wasn’t hugely different from that, you know, making a noise over here, seeing would his head move. You know, it seems when one of the physios, I think the main – the head physio from the rehab hospital came in to see him for the first time in the general hospital for a day assessment – they were spending the day with him, they were going to do all that – and she walked into the room and stood in front of him and then kind of moved like this. I asked, “What on earth’s all – he’s not going to follow you.” Jesus. I mean, even I know that. She was a very nice person, but for fuck sake. You eejit. He’s not going to follow you, [laughs] he might follow me. But maybe I was – maybe that was me just being hopeful when I spoke to you guys last maybe, you know. The assessment hadn’t been done at that stage I don’t think, it was quite early on in – was it two years ago about? It’s been two and a half years, you see. Yeah, yeah. And you see, the more you learn the less hope you will have, because you hear of this person – and we did hope maybe that the ambium or zopl – that stuff, we hoped it might have something, but absolutely no, no effect at all. 
Peter, Olga and Andrew remained the most optimistic of those we spoke with. Their relative, Theo, had regained full consciousness since we first interviewed the family and they had fulfilled their ambition of bringing him home.
 

Peter, Olga and Andrew feel that the doctors ‘wrote off’ Theo after his car crash. They emphasise the importance of keeping faith in his recovery, and keeping his spirits up with hope for the future.

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So how important in all this is hope?

Peter: How important—

Hope?

Peter: Well, there is hope. You can't – well, you must never give up, there’s always hope.

Olga: Of course there is hope.

Peter: But look, at the end of the day, whatever happens, he’s happy. And that’s the most important.

Andrew: Nine years ago, you talk about Bob Hope, right, nine years ago—

Peter: They gave him no hope.

Andrew: They gave him no hope, right. And at the hospital when they wanted to switch the machines off and we said no, they looked at us as though – I said, “What, you want to kill him?” In other words, like they were sort of acknowledging, wasn’t it, that they wanted—

Peter: They wanted – yeah.

Andrew: And we said, “No, we don’t want it.” And we—

Olga: Nobody knows how—

Peter: In fact we – to give him a chance to survive—

Andrew: He survived all them—

Peter: When he was in a coma, he was biting, he was biting the thing, you know, and the – actually the doctor said to me, “Do you want – the best thing is to put a trachy to give him – in case someone doesn’t see it and he breaks it and he chokes, he’ll die.” So that’s when I signed and I got them to put a trachy in, to give him that more of a chance to survive. I don’t know whether it was right or wrong, but at the end of the day we didn’t want him to go. If God wanted him to go, he would have died then, innit? It was meant to be. Everything happens for a reason, right, I always believe that in life. We bought that land ninety-six and look how – for a reason, you know what I mean? Everything you do in life, something points to a reason. And maybe that’s what the reason was; do you know what I mean? I – we, we don’t give up, you know. 

Olga: No, we’re not going to, you know.

Peter: And one day he’ll – I’m hoping one day he’ll prove everybody wrong and he’ll talk. And there’s a few people that are going to get a few lectures [laughs].

Andrew: No, he’ll, he’ll never, ever fully recover. Put it that way.

Peter: No, but—

Andrew: But everything that he does—

Peter: The best thing, if he could talk, if we could get him to talk.

Andrew: If we could get him to – if he does talk, you know, that would be fantastic, you know.

Olga: A big bonus for us.

Andrew: Who knows? Who knows? Only him upstairs [pointing to sky] [laughs].
Phil spoke to us a year and a quarter after his partner’s collapse – and talks about how his hopes have changed.
 

It was ‘hope’ and ‘naivety’ that kept Phil able to stay optimistic during the early weeks and months. However, after a year he paid for a review of his partner’s notes and he now feels he has a ‘realistic’ sense of what is possible.

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Denial and hope are the only two things that you can rely on to help you try and keep a positive attitude really. And so you just have to hope. Because you have no idea. And no one ever tells you with brain injury, there’s no definitive diagnosis, all they’ll say is, “It was big, it was severe, but the brain does strange things. The first six months really count, the first year really counts,” and things drag on. And people lose – well, you lose the opportunity to be able to sit down with the right kind of people to try and discuss it properly. And in the hospitals they’re always too busy. And in the end what I did last year, so a year down the line, I paid for a private consultant to sit and review the scans and just spend the proper hour to sit down and do that. Whereas I, I once had a five minute glance, and never got to talk to the consultant that did – led the surgery, it was always one of his people. And they were – they just said, “The surgery’s not really what you need to worry about, you’ve just got to look at what you’ve got and see how that evolves.” Which isn’t helpful. It’s kind of practical and I get it, but I suppose because they never really know what will happen at the end of the day, they shy away from telling you, or get – even getting into proper conversations.

Why do you think they shy away? 

I don’t know. Maybe because they don’t know, maybe because they don’t have the time. They just seem to. So you end up relying more on the ward or – we were in medical critical care at [Hospital] for most of the time. 

But we then spent time looking at that, looking at the size of the, the dark mass that represents the gaps in his brain effectively, how that was positioned. And I had a list of questions which I gave her which were about “what would you, what would you say the prognosis is, what we – no one can explain to us why he was doing better and then decayed, why might that be?” And then “what sort of whacky treatments are there out there that we might be able to tap into that no one ever mentions but could – might be there?” 

And she was very good, she went through all of the questions, basically said the most we could hope for, looking at what she’d seen, would be to get to a yes or no answer, which would be a good leap forward from today. But that’s likely to be it. So that would imply severely, severely disabled and dependent at the very best. So that was quite crushing. That was kind of diminishing the hope moment. 
 

Phil talks about accepting the reality of his partner’s condition. He thinks he could not face what it happening without hope.

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To get to – to try and get to a point where he is able to get to “yes” or “no” I suppose. Keep him as comfortable and in as less pain as possible. And try and – yeah, try and get to some sort of communication, it’s about as basic as that really. He’s –it’s clear to me that he isn’t going to be coming home. And he needs two people twenty-four hours a day. This house is not suitable for him. If money was no object then I probably – well, if money really was no object then I would get a tailored care home set up for the few of us that are all together and are friends. But the hopes I had of having him home are no longer there, because it’s just not going to happen, unless some – barring some kind of miracle. So it’s about improving his quality of life and hoping to get to some form of communication. 

There’d been a BBC documentary which we watched, Panorama, which was very helpful to give you an idea. But it was just – it’s about removing any opportunity to have the denial or really understanding what it is that you’re facing really. All of a sudden you’ll see loads of people in that same boat that are either in a vegetative state or minimally aware, or doing better than that but still severely disabled. And it’s about a new – waking up to a new and very painful reality I think. And that seems to be how the grieving has been. Whether it’s for – the grieving for fear of loss or the grieving for a new reality, and, and a different sort of loss. It’s the fact that you’ve lost your partner. You’ve lost a whole comfort blanket that you live within that comes from long term relationships and that sort of thing. And I suppose a certain element of – it is, it’s the wiping out of bits of hope I suppose, and accepting how bad things really are.

Even though I know that the chances of him recovering meaningfully are next to none, there is always some sort of hope that maybe he can. And that’s part of what drives you every day. Otherwise- if you didn’t have any hope, I don’t think you could do it. Because on the days that I feel – I don’t feel hope, I want to run away, but I could never leave him there. [Pause] [Laughs] But that, that is how – that’s the only way to cope, is to hope. 
Several family members talked about the danger of ‘false hope’ or wishing ‘for the wrong thing’. Media representations of miracle recoveries led Helen to believe that her son might recover despite predictions from doctors. She says: ‘we were told really right from day one there was no hope. But you know how it is. We all read these stories in colour supplements and in the newspaper about, ‘against all the odds my child recovered, my husband came round’, so none of us will give up hope until we are absolutely presented with no alternative’. 
 

Helen says that being able to cuddle her son in his vegetative state, gave her comfort – but she came to feel that such comfort came at too high a cost.

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For so long the only thing that enabled me to cope was telling myself that, all right, he was injured but he was still alive, he was still there. And I’ve gone on record as saying I used to go into his room and sit by his bed and bury my nose in his blonde curly hair and just sniff it. Because he felt like my son and he smelt like my son, and I could hold my warm, living boy in my arms. …And things changed, the day I had to ask myself if the maternal comfort I was getting from that was worth the price that my son was having to pay to provide it for me. …And that is a tough question to ask and the answer doesn’t come easily. 
 

Eventually Helen’s hope for her son’s recovery was replaced by hope that the rest of the family might be able to ‘get on with living’.

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Hope. Hope is key. Because the minute you get so tired and so overwhelmed that you can't see the hope in the situation is when you enter a downward spiral which takes an awful lot of energy and very often the help of your GP to overcome. First of all, I found I had to have hope that Christopher would first of all survive. And secondly, recover to such an extent that he could have some quality of life. And it was that hope that kept us going over the first couple of years. And then when that hope was finally lost and the family struggled for quite some while, it then dawned on us that although hope was lost for Christopher there was hope for us, for us. And that is what he would have wanted for us. That we could – we could hopefully remove him from a situation of emptiness, loneliness and pain. And that we could, hopefully, lay him to rest, think of him with love, and then move on to a life where he was remembered with so much love and so much affection and gratitude. And we could get on… with living. 
Losing hope for the patient’s recovery can be painful – but ‘false hope’ followed by the slow loss of hope can be even worse. Cathy described this slow and painful process of hope, and loss of hope, during the years she cared for her brother and Fern talked about maintaining ‘false hope’ for too long for her partner, and what this meant.
 

Cathy was left hoping for recovery many years after her brother would have been defined as being in a ‘permanent’ vegetative state, (highly unlikely ever to recover consciousness).

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I learnt there are just so many things that are worse than death. And I think the uncertainty as well. I still have difficulty tracking the sort of gradual erosion of hope I think is really cruel. That sometimes I think is the bit that I find most difficult to think about. Say the first year, possibly two years, when we were so absolutely intent that we would find a way. I’ve read about this now, very recently, as the miracle mind set. And I didn’t know this existed as a thing, but I can completely see how it works. And that is the thing, you get – because [sighs] you take the survival of your person, you know, their emergence from the accident, from surgery, from those first forty-eight critical hours, all that time you just want them not to be dead. And they’re not dead. And you think it’s just the first stage on the way to the miraculous recovery. And then you wait for the miraculous recovery to happen, well, not wait for it to happen, get involved in making it happen. And then it doesn’t happen, nothing else happens. 

The erosion of hope was very cruel, but was it good to have hope for a while? 

I mean, you have to try, don't you? I was talking about this with my mother recently, we were talking about whether [sighs] – she was saying if she’d been less – you know, she couldn’t really – we couldn’t work out the word, less what, less maternal? Less ferocious? Less committed? Less intent? Less prepared to give up? Would we therefore have not – would it therefore have not carried on so long, and would that therefore have been – again, we didn’t use the word better, we used the expression less worse [laughs]. But, I mean, I’m not sure, not sure. 

That’s the other thing, I’m not sure I’d actually – I’m not sure I’d do anything different over the trying. I think it has to probably take as long as – but I don't really remember – and then everything, you know, I don't want to be mean about anybody that helped us, but I don't really remember any proper or robust advice about – so there’s a period where you really have – I mean, some people do make good recoveries, obviously you have to try. [Sighs], but I suppose people don't really know about the prognosis or that was definitely – all we ever really got really I felt was people saying, “Oh well, nobody knows.” [Laughs] And maybe nobody knows, you know. But it also – but I also think we had the wrong – we just sort of had the wrong end of the stick. 
 

Fern feels that some clinicians were reluctant to tell her the truth and that ‘false hope’ led to her partner being subject to futile treatment.

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By allowing that person to be, you are sustaining a hope that is not helpful. It’s not helpful. It’s an illusion isn’t it? You’re sustaining an illusion and then, let me tell you, the crash down from that is painful and it is hard and it is life destroying. The crash down from the hope, sort of further along the line after everything you’ve been through to then realise then that this was all worthless. 

I think they half do it because they know they’re going to go off to nursing homes and they don’t have to face the decision to do it. They don’t have to face the family and say, “I’m sorry, this is the choice I’ve made.” They’re doing what we’re all doing. No one wants to take responsibility. 
People told us they had changed what they were hoping for – some people no longer hoped for their relative to recover minimal consciousness, or even to regain full consciousness. They feared that this could be worse than having no consciousness at all. They simply hoped now that their relative was unaware of their situation, and would soon be ‘at peace’. Repeated insistence from friends or distant relatives that ‘where there is life there’s hope’ was distressing and made them feel others didn’t understand. 

Health care professionals have a key role to play in supporting families in engaging with medical information. Families emphasised the importance of being regularly updated about their relative’s condition and likely future. The value of the family having the opportunity for regular discussion of this was particularly emphasised by those who felt they had been unrealistically optimistic. Looking back they thought that updates might have stopped them simply clinging to early statements from clinicians about a high level of uncertainty and helped them to take on board that the range of outcomes for the patient had become more predictable (and narrower) over time.

Some of those we spoke to were clear that optimism in these situations can be a positive force, but also a double-edged sword. Looking back, they felt that hope for recovery helped them fight for appropriate treatments, but it could also lead them to insist on treatments that, with hindsight, they thought were unjustified.

Last reviewed December 2017.
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