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Family Experiences of Vegetative and Minimally Conscious States

A ‘Permanent’ diagnosis

Severely brain injured patients should be regularly reassessed to ensure their needs are being met (e.g. if they move from a vegetative into a minimally conscious state) and that they are getting appropriate patient-centred care and treatment. 

Lynne Turner Stokes chaired the Royal College of Physicians working party on prolonged disorders of consciousness. She describes the type of assessments carried out in the initial rehabilitation setting (after the patient leaves hospital) and the need for on-going assessment.
 

Professor Lynne Turner-Stokes describes the move to specialist rehab settings for initial evaluations. She underlines the need for repeated re-assessment over the months or years that follow.

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So the majority of patients probably come to us now within the first two, sometimes three, months of their injury. So they’ve already been in the intensive care unit and they may come either direct from the intensive care unit or from the neurosurgical neurological ward before they get to us. So they’re usually on average about 3 months down the line. And I think one of the advantages that we have in rehabilitation is that we then have the patient for quite a period of time – typically 3-4 months, sometimes longer than that – which allows us to evaluate them repeatedly over time. And then we’re looking for a trajectory of change. So some people will remain stable in terms of their responsiveness, some may fluctuate up and down from day to day but actually show no particular trend over time, and then some may start at a low level and gradually accrue responsiveness and signs of awareness, ranging from either the frequency of response or the sophistication of the responses, the level of the responses, that we see, which indicate that they may be on a pathway towards emerging from a prolonged disorder of consciousness.

So this is within the first year of the event?

So this is for the initial assessment and diagnosis, yes, which would definitely be, in the most cases nowadays, within that first year. What we obviously expect, according to the Guidelines now, is that patients will carry on being assessed at regular intervals. Those actual intervals may vary depending on what you’re expecting but roughly approximately six-monthly in the first stages and potentially annually thereafter. And so what you’re doing is you’re reviewing them, working with whoever’s looking after them, be they in a specialist nursing home, or in a home environment occasionally. So you’re working with family members and the care staff to identify whether there’s any change in the level of responsiveness.
The National Clinical guidelines produced by the Royal College of Physicians 2013 outline appropriate assessment, diagnosis, and monitoring – see Section 2 of the report, with a summary on pages 33-35. The guidelines state clearly that: 

“Clinical re-evaluation for the purposes of treatment planning should be undertaken at 6 and 12 months post injury and annually thereafter. Assessment should be undertaken by an appropriately skilled assessor.  It may be based on information gleaned from interviews with family members, carers and treating professionals.” (p. 23)

However, the family members who spoke to us (speaking mainly before the RCP guidelines were published) often had not had the chance to talk with anyone in depth about the diagnosis and prognosis for their relative for a long time. A proper assessment is particularly important for patients who may be in a permanent vegetative state – but things sometimes drift.  Assessments and updates to the family are important so that they understand the current situation, to ensure the patient’s best interests are addressed, and to avoid simply abandoning families and patients.
 

Seven years on from her father’s injury, Mikaela asks ‘is it going to get any better?’ and feels she does not have clear answers.

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Is this – is this what it's – is this all it's going to go?  Is it going to go any further? Is it going to get any better? 

Have you been given any advice about whether it will get any better at this stage? Have you had meetings with consultants or—?

When he was in hospital, yes, and they – they said that, no, it would – it would probably stay the same. But they – again, but they couldn't say, you know. They don't know much, do they? They – they just say, "Oh, you just see how it goes and maybe he will, maybe he won't." They can't give you a definite, "Yes, he's not. That's it. He's not going to get any better." Or they can't give you a definite, "Yes, in so many months now he might start saying yes or no or—."  They just can't tell you anything. But it's been – it's been six – six – seven years now, sorry, and, he hasn't got any better at all, so this—

And since he left hospital has there been any re-diagnosis or—?

No.

Updated information to you?

No.

So all you're left with is the information you were given when he was in hospital

Yeah.

And have the notes from those who are looking after him, or indeed your own observations, do you see any signs of change?

No, nothing. Nothing.  But they – it –like I say, when I have to sign these six-month assessments – in the home, they – they now call it minimally aware, don't they? They don't like calling it vegetative state. But minimally aware would mean that there's something you – there's a little – that he's a little bit aware. I don't see that. I don't see that at all. So it's – that's confusing a bit. 
It is important that relatives are given the opportunity to ask questions and reflect on any change in diagnosis. This situation is not helped by confusing language – for example, the term a ‘low awareness’ state is sometimes used to mean ‘vegetative (but is seen as a ‘nicer’ word) and is sometimes used to mean ‘minimally conscious’ (meaning the patient does have some intermittent awareness - see ‘Definitions’). 

Diagnostic terms may also be used by staff who may or may not have training in how to assess consciousness and may, or may not, have a great deal of hands on experience (and hands on care which gives the opportunity to observe a patient’s reactions).

Observations from carers and family members and friends can be usefully supplemented by formal and systematic assessment using tools such as the ‘Wessex Head Injury Matrix’ (WHIM) and the ‘Sensory Modality Assessment and Rehabilitation Technique’ (SMART). These involve regular testing of the patient over time – involving a range of standardised stimulation trying to test responses to different stimuli (e.g. sound or sight). The patient may be presented with, for example, a loud sound, a picture, or a verbal instructions such as “raise your eyebrows”. Patients are scored from “no response” or “reflex response” at the lower end of awareness to “differentiating response” at level 5 at which a patient may follow instructions or use an object appropriately (e.g. scribbling with a pen).
 

Angela talks about witnessing her husband undergoing SMART assessments

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Age at interview: 50
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So we got him in SMART assessment and I was at every SMART assessment session.

That’s really useful, because there’ll be other families going through SMART assessments, so it will be – can you tell me what your hopes were from SMART? And what the process was like as a family member to witness?

It’s, it’s very – it’s hard to witness in fact, because you kind of know what they’re looking for and you know if they’re not getting it. And unfortunately the environment wasn’t – from what we learnt in the UK from these four beautiful places that we visited – they were absolutely amazing, and they had great atmosphere – what we learnt is that they need – someone with brain injury really needs to be able to pick out a sound, so they would need peace and quiet, and they would need lots of rest in between sessions and be worked with when they’re at their most alert. And a lot of this kind of is now two and a half years so it’s – you know, a lot of it I knew very much at the time and I might be forgetting bits and pieces now as time has gone on, but his environment was not suitable. It was all that they had unfortunately. But it was in a general ward and there was visitors, the TV was on, there was cutlery, you know, rattling, there was care assistants and doctors talking to each other. 

So we – there was a checklist and, and I sat with the assessor who – a very nice lady and she and I got on very well – and it was – she was scoring on a sheet, you know, asking him to do things, trying to get him to turn his head, at – you know, but no – but there was no consistent response, there might be an accidental – what might have been considered an accidental response.  And – but we went through the whole thing. And he was in that rehab facility for seven months until we found a place that could care for him with his trachy. And he’s there now and they do look after him beautifully, but the result of the SMART assessment was that he was minimally conscious to vegetative.

So as they filled in the score sheets, say more about how that feels as a family member.

Well, your heart sinks, you know. Because you’re hoping. And people who don’t understand what has happened have a feeling that, you know, he’s just going to wake up some day. People have woken up from comas, you know. And although I kind of knew, I still wasn’t going to – I wanted to maximise his chances of any recovery at all. But the fact remains he will need constant care for the rest of his life.
People who spoke to us sometimes felt they had had to struggle to get their relative’s level of consciousness properly assessed and sometimes felt their own observations of the patient were ignored.
 

Some people dismissed her father as completely unaware – but Morag and her mother and sister could see that he responded to them. They fought hard to get a proper assessment for him.

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So even in such a small hospital, there were only kind of two wards, there were three PVS patients in there. And they were basically left there to rot, I think is the – you know, they were being tube fed, or PEG fed, so they were getting their feeding. They were getting their bed linen changed, but otherwise, there was no proactive care whatsoever and one day a neurosurgeon from the [London Specialist Centre] came down to give a lecture, a talk to some of the doctors or surgeons in [Hospital] and he’d heard about the three of them in [Hospital] and wanted to come over to see them. So he came in and kind of did some tests and my dad, out of the three of them, was the only one that did react. He said it wasn’t consistent, it was intermittent, but he said he wanted him to go to [London Specialist Centre] to do some tests on him, and to see – he said even it’s moving his little finger or his chin or blinking an eye or any way of communicating “yes, no,” then that could be unlocking his contact with the world. So this was just hope, joy, elation, and then the NHS said they wouldn’t pay for him to go. So we started fundraising. So we started raising lots of money ‘cause it cost quite a lot of money, even for us to go and stay for the weekend as a family, you know, you’ve got to pay for families to stay there as well. And by this point, you know, there was nobody working in the family. 

And so that was kind of hope that somebody had recognise what we’d been saying for such a long time, that he could hear and he could understand, and some of the staff got it and a lot of the staff didn’t get it. And a lot of the staff would go in and speak over him, as if they were changing an empty bed. And I don’t know how many times, as family members, we would firmly but politely take them outside and say “please don’t speak over him, he knows, he can understand” and they go “oh, Vic is Vic.” You know, he is where he is and he’s not going to come from where he is and I think as staff in a hospital, to say that, you know, nobody knows at the end of the day. You know, and where there’s life, there’s hope, was something that we just kept saying over and over and over again, “where there’s life, there’s hope”, and we never gave up hope really, ever. And it wasn’t a case of us being wrong, it was a case of us having to tell the other people that they were wrong, that, you know, he could hear and he did understand and I know as you explained to me how, you know, we’d have to tell him at least 20 minutes before visiting ended that we were leaving because he’d get so agitated and anxious. And you know, his whole body would kind of twist and contort and he’d be really, kind of you know, anxious and worked up as sort on as we’d say we were leaving, you know. So you tell me if he doesn’t understand, why he’d have that reaction all the time? You know, and some days he’d kind of almost like blow bubbles, sort of dribble sometimes and, you know, my sister and I maybe – or my mum and I would be sat either side of the bed and we’d say “no don’t blow those bubbles at me” and he’d turn his head the other way and whoever’s on the other side, “well don’t you turn to me and think you can do it.” And then he’d turn his head back again. Now are those the signs of somebody that doesn’t understand? Absolutely not. 
 

Eventually Morag’s family were able to have her father taken to a specialist assessment centre in England. But Morag believes being away from his familiar environment in Wales did not help him to display his potential level of awareness.

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We did get him to [specialist centre] and something very strange happened when he got him to Putney. He shut his eyes and didn’t open them for the whole time he was there, until we came back in the ambulance and my mum said oh look, we’re getting to the Severn Bridge, you know, Croeso i Gymru, Welcome to Wales sign, and he opened his eyes in the ambulance on the way home. So again, he didn’t – you know, apparently he didn’t understand but he lost a lot of weight and they doubled his feeding when he was there and the weight dropped off him. And by the time they scanned him, they scanned him for MRSA before they could go there and again before he could be transferred back again, and they found that he had dozens and dozens of little kidney stones which they said had been brought on by stress because the accents were different, the voices were different, his environment was different and we weren’t there all the time because we couldn’t be because he was in London and we had to pay to stay here. And you know, we just couldn’t afford for my mum to move down there for, you know, however many months. And you know, so we would travel down on a Friday evening and sometimes we’d travel back really early on a Monday morning in order to get back for work. But during that time, he didn’t have familiar voices, he didn’t have a familiar routine, but the really good thing is that we raised money for a wheelchair for him and they had a beautiful garden, so –

Res: So they would get him, you know, in a tracksuit and his head would be all strapped in and everything, and at least you could take him out for a bit of fresh air and just sort of wheel him round the garden, so that was nice for him to have, you know, just a bit of change but I know he used to get so distraught when we were leaving and it’s just, I suppose, if your only contact with the outside world are voices and sounds, when that changes completely and your family aren’t there, you just can’t even begin to imagine and, you know, he had all these kidney stones, so he had operation. He went down to theatre when he came back to Cardiff, to get rid of his Kidney stones because he was in a lot of pain. 
It seems that Morag’s father was never given any other label than ‘vegetative’. He died after nine years without any official acknowledgement that he had any awareness. This was some years ago however, before the widespread recognition of the ‘the minimally conscious state’. Morag’s description of her father suggests that he might have been re-diagnosed as minimally conscious if he were alive today. We discussed this possibility with Morag, and explained how minimal consciousness was defined and assessed.
 

On hearing about the term, ‘minimally conscious state’, Morag was not impressed by the progress of medical science in helping people like her father.

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Derick Wade is a consultant who does evaluations on people who are in vegetative or what would now be called minimally conscious states, for your father…

So right, they’ve got a new name for it now have they? 

Yes, minimally conscious.

They’ve haven’t done anything except re-name it? 

Yes, minimally conscious is defined by intermittent consciousness, minimal and intermittent.

Well there we are in the last 20 years they’ve found a new name for it, Whooppee.
Recognising that a patient is aware is crucial to their care, it is equally important to recognise when patients have no awareness at all. Sometimes a patient in a permanent vegetative state is left without a firm diagnosis being provided for them, or communicated to their families. Assessments and updates to the family are important to ensure the patient’s best interests are addressed and families and patients are not simply abandoned. A failure to provide a vegetative state diagnosis may mean the patient is treated ‘by default’ when this is not what they would have wanted and may leave families putting in huge effort to provide stimulation, love and comfort to a patient who is completly unaware of this. A clear diagnosis of a permanent vegetative state can be devastating for some families, but was welcomed with relief by others because it can suggest a clear way forward.
 

David and Olivia say it was hard to get a definitive answer about diagnosis, even years after the injury, and even though proper assessments eventually showed that David’s mother was in a permanent vegetative state.

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David: The doctors never sat us down and ever, you know, gave us a definitive answer to our questions. It was a bit political. Everything was a grey area, “Oh, it could...” or, “Have you noticed anything?” Or, “Have you seen anything?” “No, no, no. Well, there’s your answer.” But they would never just give you a straight answer.

Why do you think that was?

David: I don’t know really. Maybe they just didn’t want to put themselves in a position where – I don’t know. I don’t know. But it just never seemed at – you asked them a straight question, you never got a straight answer.

Were you given a diagnosis, like vegetative or permanent vegetative state, by the doctors?

Olivia: No.

David: Well, only later on, wasn’t it, in the home. It was stated then that she was in a permanent vegetative state.

Olivia: Yeah.

David: But that was very, very late on in – that was when she’d been in the home for quite a while I think.

So some years?

David: Yeah, maybe.

Olivia: Yeah, it must have been.

David: Hmm. Because we received a letter basically which showed all the drugs that she was on, and then it had a statement saying that she was vegetative and that—

Olivia: She was in a persistent—

David: Persistent vegetative state, yeah. But like I say, we were so – you know, we were having – with sort of specialist doctors and consultants, we were asking, you know, definite questions, but never getting anything definite back. But I – you know, we knew the answers but we just wanted to hear it from them.

So what was it that you were asking specifically? What was it that you wanted to know?

David: Well, can she hear, can she feel, can she this, can she that. But like I say, that’ll be your question and then they ask, “Has she seen you? Does she follow you round the room? No. Well, there’s your answer,” kind of thing.

So there weren’t formal tests, like SMART tests being done, at that stage?

Olivia: No. That was only done in preparation for the court case.

David: That was only done at the end. But you would always try, you would always come in and kiss mum and she – her eyes would be over there. And then you would lay with her and try and look, you know, deep into her eyes or – you know, trying to find her. And she would just roll her eyes back in the back of her head, she could never – she could never focus for more than a – well, if she focused, she just looked your way [laughs]. But yeah, we used to—

Olivia: But that was difficult, because we tried for six months.
 

They felt ‘elated’ after their conversation with the expert rehabilitation consultant who assessed David’s mother - ‘for once in a blue moon, we knew what was going on’

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Olivia: I remember after we had the first meeting with him, and we – you know, he was absolutely fantastic. And we said, “Why couldn’t other people have been like that?”

David: Hmm. Just talked to us straight, didn’t use fancy words or anything.  He just talked to us straight. He knew how we were feeling and took his time, he’s such a patient man, and just, you know – and we came out of there, you know, upset but elated that someone had spoken to us in a professional, down to earth manner. And we knew what was going on, you know, for once in a blue moon, you know, so we weren’t going home going, “What did he say? What did...” you know, we understood. Clearly and concisely, you know, that’s everything I think.  
National clinical guidelines by the Royal College of Physicians (2013) emphasise the importance of not letting such situations continue without proper assessment (including considering family observations). The guidelines underline the value of best interests review, and the obligations on the treating clinicians to ensure their patients are treated appropriately at all times, and that decisions are revisited in line with an appropriate timetable and the guidelines for clinical practice. A ‘permanent’ diagnosis cannot be given until many months or even a year has passed and depends on individual circumstances. Proper reassessment should be carried out to ensure the correct re-diagnosis is given if a patient does move into a permanent vegetative state. The diagnosis of a ‘permanent’ disorder of consciousness is discussed on pp. 10-11 of the National Clinical Guidelines produced by the Royal College of Physicians’ [See ‘Resources’] and is discussed below by Professor Lynne Turner-Stokes.
 

Lynne describes the timescale and conditions for when a patient might be described as ‘permanently’ vegetative and reflects on what ‘permanent’ means.

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According to the Guidelines from the Royal College of Physicians, broadly speaking, those people with the hypoxic injury, the diffuse injury, those who are likely to emerge back into consciousness probably will have done so within the first six months. Sometimes a bit longer. That’s not to say it’s impossible that they would emerge after that, but it becomes less and less likely that they will do so over time. Whereas someone who has had a traumatic brain injury, one has to leave longer – probably at least a year. But it does depend on other things about that person too – things such as their age (the older the brain when it’s injured, the less possibility for recovery) but also any pre-existing conditions that may affect the general health of the person and their ability to make a recovery.  So there’s no one particular time after which you can say categorically that the person won’t emerge. And the challenge for us as clinicians is to try to put all the pieces of the jigsaw together and try to work out what is a reasonable time to wait. But the trajectory of recovery, that is the evidence of change over time, is the strongest lead that we have – hence the importance of not just assessing somebody once but repeatedly assessing them and using validated tests so that we can actually make a measured comparison over time. That’s what’s likely to give us the best indication about whether somebody’s likely to emerge or not. 

Is there a point at which, at least for some patients, you have felt in your own history, able to say: “This person will not regain consciousness, ever. Categorically.

It’s almost impossible to be categoric about anything in medicine – there’s always a certain level of uncertainty. But yes, in somebody for example who you’ve been observing over a prolonged period of time who is showing absolutely no signs of change at all and who’s remained in a vegetative state for many months or sometimes even years, I think one can be as certain as it’s possible to be in medicine that they’re not likely to recover. And therefore we need to think about decisions about whether continuing life-sustaining treatments is actually in their best interests.


Last reviewed December 2017.
Last updated December 2017.
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