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Family Experiences of Vegetative and Minimally Conscious States

Craniotomy and craniectomy

A craniotomy is the surgical removal of part of the bone from the skull (the bone flap) to expose the brain. In craniotomy it is temporarily removed, then replaced after the brain surgery has been performed. A craniectomy also involves removal of a portion of the skull but in this case it is not returned. This is done if the brain is too swollen or if the skull bone flap cannot be replaced for other reasons (e.g. infection). ‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬

Swelling in the brain after traumatic brain injury can cause additional damage when pressure builds up in the brain as it is compressed against the skull. Although it is a controversial surgery, some research suggests that this additional damage can be reduced by allowing the swelling brain space to expand by removing part of the skull (a 'decompressive craniectomy').‬‬
  • Some of the families we spoke to were very pleased that the operation had been done, believing it had reduced damage.
  • Others wished the operation had not been performed, believing that, without it, their relative might have died. 
Sometimes surgeons may have operated, but then be unsure about whether or not this was the right thing to do. The surgeon who operated on Kevin and Miggy’s son told them he wasn’t sure whether he had made the right decision when he intervened to save the boy’s life.
 

The surgeon who operated to save their son’s life expressed doubts about whether he had done the right thing.

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Kevin: And Matthew was rushed to, rushed to surgery immediately. And in that period of time, we spent in a little guest room on the side of the ward and then after, I don't know, it seemed like forever, but say maybe two or three hours, the surgeon came out and said, “I've operated on your son. I've saved his life. I don't know whether I've done right or wrong.”
 
Miggy: Hmm.
 
Kevin: - And that was his exact words.
 
And when the surgeon said, “I’ve operated. I’ve saved his life. I don’t know whether I’ve done—”
 
Kevin: Well, to be honest with you, it’s later on in life that you realise the words he said at that time. You don't, you don't understand those words when he, immediately when he said them.
 
Miggy: Yeah.
 
Kevin: You know, we didn’t, we didn’t, you know, we didn’t know then what we were going to learn over the next eight years.
 
Miggy: Exactly.
 
Kevin: You know [laughs softly], if you don’t—
 
Miggy: And we’re, we’re such optimists.
 
Kevin: Yeah.
 
Miggy: We only need a tiny bit of something and the surgeon said that but we thought, yeah, that’s for other people.
 
Kevin: Yeah, yeah.
 
Miggy: Matthew’s big, he’s strong, he…
 
Kevin: Yeah, that’s right, yeah.
 
Miggy: …keeps himself fit, he’s determined. We’re a good family, we’ll get through this. 
Those who wished the operation had not been performed – were usually taking this position with the benefit of hindsight. The people we talked to had relatives who had poor outcomes after their craniectomy/craniotomy (because our focus is on vegetative and minimally conscious states). The views discussed here do not necessarily reflect the experiences/views of other patients’ families (such as those where the patient had better cognitive recovery after a craniotomy, or those who died).

Regardless of their view about the value of the operation, the people we interviewed often described how shocking it was to see their relative with part of their skull missing.
 
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Lee and her mother were completely unprepared for what the craniectomy meant. She is grateful to the surgeon for saving her brother’s life, but wishes they had been given more information.

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His face was really puffed up because when they do the skull flap – it's really horrible – they pull all the skin forward, essentially. So then they take the skull flap out and literally they pull it. So his whole face was swollen. He looked grotesque. And they'd said they'd removed a little bit of skull. The consultant said, "A little bit of skull". And like, me and Mum are sat there like, "I wonder which bit they've taken," kind of looking at this weird, puffy, egghead thing, going like, "I don't know." …And we were kind of like assessing his head, looking, and going, "I wonder where it is." We imagined a postage stamp, like a borehole, you know, from caveman times. No one – no one warned us of this. As the swelling went down, every day we were a bit more like, "I think it's bigger than we thought." It was the whole fucking thing, from there to there, like something out of a Hannibal Lector film. It was awful. And that realisation, I remember he coughed and you could see his brain. And like, I thought I was going to be sick, and my Mum burst into tears. And we were just like, "It's his whole fucking head. His whole head has been removed." And all this time we've been stroking his hair and picking out scabs and things. Jesus Christ….Oh God, it was awful. It was the most horrific thing I think I've ever seen because it was just so wrong… That was nightmarish. I get nightmares about that bit.

It's just so wrong in what way?

It's a nightmare to see someone you love with a whole part of their anatomy missing and to suddenly realise, like in that surgery that it wasn't just a little removed - they've opened up his head and taken a part of him out. There is a part of him gone. So all this brain damage, well of course he's bloody brain damaged; they removed half his head (laughs) and you can see his brain moving and you just see how, like, small and vulnerable he is. And all these things that we've just taken for granted, that my little brother will do anything and he bounces back, he's indestructible, he's this amazing little thing, and his skull is missing. 

And I think it's almost like – a lot of the time, like if he was asleep and things, you could almost humour yourself that nothing was going on. You'd have quiet moments and think, well, he's had a bump. But when you can see someone's brain, every part of that image is wrong. You can't pretend for any instant that this isn't going on. There's no part of that you feel you can just step away from.

And every time he sneezed and things, it would move. And you'd be sat there, kind of morbid fascination, like this is just wrong. And it was disgust. You don't want to – well, suddenly we couldn't touch him because he was so fragile. His brain had nothing but a layer of skin over. What makes him him is a finger prod away. We could barely touch him. And we'd been rolling him around. We'd been changing him. And just all of a sudden everything changed because ... you know. And he's got staples in his head as well. He had staples. You're like, what happens if it splits? And like really stupid things cross your mind …like if I pick him up too fast – because he used to slide down the bed – if I pick him up too fast, am I going to catch it on something and is it going to bust open like a zit?

Did they discuss doing the craniotomy with you beforehand and say—?

No, they did an emergency one before my Mum got there. You know, they had to save him. That's fine. I can't fault the neurosurgeon because he did save my brother's life. But any question we asked was fobbed off with a kind of, you know, ‘how-long-is-a-piece-of-string’ kind of answers. And I know that no one's got answers, but you at least need like a spectrum of where things could fall. It shouldn't just be, well, you know, ‘no one knows’. But you could say, well, some people will rehabilitate and go back to work and others will stay at this state... But just a, "Oh, nobody knows".
Sometimes, like with Lee’s brother, the operation was conducted in an emergency before it was possible to consult with the family. But many of those we interviewed were involved in some discussion about the operation – whether they felt ‘just told it was going to happen’, ‘consulted’ or ‘asked for consent’. Mark’s account shows that he was involved in a clear ‘best interests’ process where the doctors tried to weigh up clinical information alongside what Mark could tell them about his brother.
 

Mark and Helen were shocked by the look of the craniectomy– but three years on they are now used to it. His brother remains unresponsive but looks like he is ‘resting’ and they still think he might recover.

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Helen: No, I – seeing [brother-in-law] is not shocking because, the first – the biggest shock I had, when he’d finished with the operation and he was sort of just recovering, was when his, brain swelling went down. And that was an almighty sort of – I kind of – yes, I knew they’d taken part of the skull away, but it hadn’t occurred to me quite what that would do to his head shape. And that I think is – was a big shock. But that was two, three years ago. So now I’ve got used to that one. So when I go and see him, he does generally look quite peaceful, quite happy. How can he look happy? But he doesn’t look to be in distress. He doesn’t look traumatised, he doesn’t look like he’s struggling. And I think it – that lack of apparent struggle that makes you think he is okay where and how he is right now. If he did show signs of—

Mark: It’s kind of like he’s waiting for something. He isn’t. But he’s…

Helen: He looks as if – it wouldn’t totally surprise me that he is just completely resting and he is going to make a complete – almost hundred percent recovery. Because he looks – apart from the head he looks undamaged, he looks – there are no – it was worse when he had wires and tubes and bits of equipment bleeping. All of that’s gone, even the oxygen has gone.
 

They still hope the craniotomy might have been the right decision.

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Looking back at that decision, do you think it was the right decision?

Mark: I still don’t know. And the reason I don’t know is because the one thing, the one thing I dearly would like to know - and they’re talking about running some assessments now to find out, but, I mean, we’re three years down the way now - is I can't tell reliably how aware my brother is of what’s going on around him and what’s, you know, life around him is like, and what life for him is like. So I still don’t know whether that was the right thing to do or not. Because if he is aware – and something in him is fighting back, he gets illnesses and he gets chest infections and he’s, you know, he spent all of Christmas in hospital because of a stomach problem with his feeding rig, PEG - but something in him is fighting back every time, I think. Because I think if he was, if an individual was minded to give it up and forget it, then…

Helen: He had every opportunity to, yeah.

Mark: He had every opportunity several times to do that. So while he’s prepared to fight, I think I need to fight on his behalf I suppose. And until somebody can prove that he doesn’t respond and he doesn’t know what the hell is going on around him, it’s not for me to say that, that, nobody should do anything more really. So I still think it was the right thing to do now. I do wake up at night sometimes thinking by agreeing to that I’ve been party to him having three years of what could be an absolute nightmare existence for him. But if there’s a road, an improvement road there, however small it is – and I think at times he does respond. So I do think there is something there that could be built on in time to get some sort of communication going. And I still think that’s better than nothing which is, which is where we’d have been otherwise. So, so I don’t know, what do you – it’s easy for me to say. 
 

Clinicians were clear about their own difference of opinion and Mark reflects on the uncertainty surrounding the value of a second operation.

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Mark: So it must be very difficult for somebody in a position of the consultants and surgeons to decide whether - I mean, it’s not deciding if something is worth doing or not, is it, it’s whether there’s a benefit for that individual to do it or not. And I can appreciate that and – whereas it feels – I hated that whole, you know, you just come out of there thinking – you almost feel like you’re asking – they’re asking you whether he should – whether they should do something to keep him alive or not really. And, and it’s not as cut and dried as that, when you look back on it. It wasn’t, but it just feels like that at the time. And really what they’re trying to do is formulate an opinion. And some are very stark about what they say and some are quite sensitive about what they say and how they say it. So you can have one of those conversations with one or two consultants and come out of it with a fairly hopeless kind of perspective on the whole situation. And then four hours later you can have another conversation with another consultant along similar lines who is actually quite positive and relatively hopeful about some reasonable result from it. I think that’s fair to say, isn’t it?

Helen: Yeah.

Mark: We did have some pretty horrible discussions but – at that point. But then we also had some whereas I say they were quite positive about the situation. Which meant overall you still couldn’t really decide what was for the best. You decide, don’t you, on what you know at the time. And what we knew at the time was that he probably wouldn’t be able to walk again. But he possibly could use a computer, talk, think, properly. And that for me would be a reasonable result, given where he was - or the position he was in. So I was in favour that they did carry on with it. And as I say, ultimately he did. I don’t, I don’t know to this day how thin a line he was on, you know, if, if – or how, you know, at what point they decided – or what it was that made them decide to do that. We had one discussion, really middle of the night, with one particular surgeon, didn’t we? Who came – asked to see us, we were in intensive care with him. And he was a really nice fellow. And he said, “Look, we are undecided about this to be honest. Because we could do more damage than there is already. You might not think that, but it’s possible, you know. And it could have a catastrophic result for him.” I said, “Well, if we do nothing it’s a catastrophic result anyway from his perspective, isn’t there.” And he said, “Yeah, there’s no avoiding that really.” So, – it was a strange conversation because he wasn’t really asking me – he asked about what [my brother] did, how he was and what kind of things he was interested in. What I felt would be a reasonable quality of life for him in the future, and then didn’t really say much beyond that, went away, and then next thing we heard they’d decided to go ahead and do that, and they did do the second craniectomy. 
Families who felt it would have been better if their relative had died often regretted the craniotomy/craniectomy as a major intervention. This operation (along with resuscitation, tracheostomies and ventilation) was seen as one of the key interventions which might have prevented a more timely death.
 

Sonia thinks the craneotomy was ‘the worst decision’ made for her mother – it meant she survived, but was condemned to what the family think was ‘a living hell’.

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So, I’m just trying to think what the next stage was. That was the event as it were; and then we were told not really to have any expectations about what the outcome would be. They gave her a tracheostomy, so she had a breathing tube in through her throat as well, and she was being ventilated artificially and fed artificially. And then over the next twenty-four hours they said, “Her blood pressure is falling, she seems to be coming up to a higher level of consciousness.” And we had a phone call saying that she had been talking, she had been talking and she had been asking questions, on the following day, I think this was the – late on the Sunday or the Monday, and that she seemed to be in a position where she could come out of ICTU and move up to a high dependency ward.

And then following that, we did a couple of visits in the morning and the afternoon and then we had a, a phone call just after we had finished one visits, so we were, in the city centre. We had a phone call saying that she had lost consciousness and the sort of intracranial pressure was extremely high. And she was likely to die if they didn’t intervene and what was our decision. And this was kind of a telephone call, so it was incredibly difficult to make a decision after sort of having the news delivered by phone. My father said, “Well, you know, we have no idea really, what’s the prognosis? She – you know, you said that she was getting better, she seemed to be, relatively conscious and, and kind of responding to questions and so forth. And now the situation is looking very much worse, what would you do?” And the response to that was, “I can't possibly answer that question.” I remember my dad asking again, “But what would you do if this was your wife or your mother?” And the response coming back, “I can't possibly answer that question, if we don’t operate she will die.”

And then – so, so we went to sit down together and think rationally about what the – you know, what could one do for the best. And having only recently seen the person – being told that the person had been asking kind of pertinent, relevant questions, was aware of their surroundings, sounding very much like themselves, we made the decision that the operation should go ahead, and so she went back down to, intensive care following that. It was, notionally successful, I don’t know what the measure of success in this kind of thing is, but it relieved, relieved the intracranial pressure… and from that point onwards she was in ICTU I think for  – I actually can't remember specifically, I don’t think it was all that long.  I think it was something like three or four days, until she regained consciousness.  But the level of functionality she had following the intervention was much less than she had, prior to the intervention. And so then the questions that were asked were ones about, appropriate interventions to improve mobility, to improve speech, to improve, you know, the kind of potential, to care for oneself. 
Clinicians need to think carefully about how to approach families when considering a craneotomy. For example, family members’ instincts are often to say they want their relative to live, whatever their condition. But the key questions clinicians should be asking themselves – and asking families to reflect on - is what the person themselves would want. Henry Marsh, is a very experienced neurosurgeon and author of the book ‘Do No Harm’. He describes how he invites families to consider what they think the person themselves might want, to help him decide whether or not he should operate.
 

Henry Marsh talks about how he asks families to consider what the patient themselves would want.

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I say, “This is one of the most difficult decisions you are ever going to have to make in your life. But you know your loved one, I don’t. I’m quite certain that if we treat them they may die anyway but if they do survive they’re going to be left profoundly disabled. Now what that exactly means is often hard to predict but we’re not just talking about being partially sighted or having a weak leg. We’re talking about a profound change in their personality. They probably won’t be able to talk or think properly. They’ll be totally dependent. I can’t predict in exactly in what way. And the question you have to ask yourself is ‘Would they want to be like that? Would they want to survive in that condition? I don’t know the answer to that. You probably do because you know them. You should not be asking yourself ‘Do I love this person enough to look after them when they’re disabled?’ – of course you do, because they’re your kith and kin. But would they want to survive in a terribly damaged state?’”.  And if you put the question to the family that way you’ll get an entirely different answer from if you say, “We can operate but they’ll be left very disabled”. 
Neurosurgeons have different views on what should be done – especially when there is some uncertainty about the outcome. Some clinicians would always err on the side of saving life if they thought there was a chance of meaningful recovery. By contrast, Henry Marsh, believes that his colleagues in neurosurgery need to be more aware of the profound neurological disabilities that result from some of their decisions to intervene. He argues that sometimes it is right not to intervene, even if clinicians are still uncertain about the outcome He comments, that in some circumstances, ‘I think we do need to accept that death is often a good outcome.’
 

Henry Marsh explains his view that neurosurgeons need to become more aware of the negative outcomes of intervention and reflects on uncertainty.

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But on the whole we do not- in Neurosurgery we do not see the long-term consequences of our decisions in terms of bad results. 

Is there a way that could be made to happen? That you think would be a good idea?

Well I think it should be part of neurosurgical trainees’ education to visit some of the long-term neurodisability units that are scattered around the place. I think one ought to go and see them, just for a visit, to get some idea of what profound brain disability is like. My trainees I think have no idea at all.

The problem from my point of view with that of course is that is that one’s never entirely certain. You always think, “Well, it’s just possible they’ll make a better recovery than I think”. So the question then becomes one of how many bad results justify one good result?

And you never know. And if you say, “I’ll only make a decision if I can be absolutely certain I’m not missing the opportunity to save one person’s good worthwhile result”, you’re running the risk you’ll condemn many patients – and above all their families - to a living hell of having a profoundly disabled relative in long-term care afterwards, which is a terrible state for families to be in.

One does need to have some feel for what happens to many people with severe brain damage and I think on the whole neurosurgeons become increasingly conservative as they get older. I think you’ll find young new consultants are much more enthusiastic about treating everybody than people my age. And it’s partly I think from experience one is more aware of the fact that many patients do very badly. 


Last reviewed December 2017.
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