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Family Experiences of Vegetative and Minimally Conscious States

Hospital re-admissions

Patients in vegetative and minimally conscious states often end up being re-admitted to hospital even after they have moved into long term care, because of issues such as infections or operations (e.g. to try to address spasticity or deal with a feeding tube). Whereas a specialist care home offers staff with a combination of skills (and equipment) to support these patients, their highly complex needs can rarely be addressed within any single hospital department. On many wards staff have never encountered anyone in a vegetative or minimally conscious state before. Hospitals were repeatedly described in interview as ‘dangerous places’. Going into a hospital with a severely brain-injured relative was dreaded, even when it was thought to be in the patient’s ‘best interests’. (This is one reason why sometimes decisions are taken to keep patients comfortable in their care home, rather than transfer to hospital).

People talked of patient’s notes lost in transit, best interests decisions that had been put in place in the care home being ignored and their vulnerable relatives having to be admitted via A&E because there was no system to deal with them. Patients were sometimes left without their medication or without the nebuliser they needed to help them breathe. Some were put on trolleys where they were at risk of falling and subject to unexplained changes in medication. 

Relatives often had to show staff how to set up equipment (or go back and forth to the care home to find compatible parts, such as tracheotomy tubes) and sometimes found they had to manage aspects of the patient’s care themselves - ‘So you end you don’t dare leave him’. This disruption could seem distressing to patients – some of whom became agitated or moaned. Family members, after struggling to sort things out with the hard-pressed healthcare staff, often found that all arrangements disintegrated as the patient was moved between departments or wards. 

Lack of knowledge (and sometimes failures in basic observation) led to ludicrous situations:
  • One woman was advised that her sister (who had been in a minimally conscious state for years) ‘seems to be showing symptoms of a blow to the head’. 
  • Another was informed, as he returned to the ward, that everything had been explained to his (possibly vegetative) brother – and he should have a chat with him.
  • A third person, who had explained that her daughter was in a vegetative state, was then asked if her daughter could walk by herself or would need a wheel chair.

Hospital re-admission places huge stress on the family and their relative, and patients sometimes returned to care homes with problems such as bedsores or hospital acquired infections. Mark comments that his experiences ‘colours your judgement - “Should he go to hospital or not?” Because you’re thinking, oh, unless he’s at death’s door, probably not’ to which Helen responded: ‘Because even if he isn’t [at death’s door’], if he goes to hospital, chances are he will be by the time he comes out!’
 

Mark believes his brother usually goes downhill whenever he goes back into hospital.

Mark believes his brother usually goes downhill whenever he goes back into hospital.

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Mark: It’s quite a marked difference though when he goes into the hospital for something or other, and he just goes downhill because they just don’t know him as an individual. They don’t know, they don’t tend to even read his notes. So they’re asking questions and then get exasperated because he doesn’t answer them. Or they’ll give him a diagnosis, because I had popped out to get a cup of coffee, and the doctor will come in and say ludicrous things like, “I’ve explained to [Patients Name] what’s happening and he’ll let you know,” and go out of the room! And you’re thinking, “hang on a minute, you know, it doesn’t work like that with him.” And again, you know, they’re very, very busy. It’s easy to say that’s wrong, but we are talking to the hospice about putting a pack together to send with him when he goes to hospital, that’s kind of got a one sheet thing about, you know, he won't answer you, he can't necessarily understand what’s going on, but we do think he’s aware to some extent, and his medication needs to be – you know, they took him off some of his medication while he was there last time round. And—

Helen: Still don’t know why.

Mark: The hospice – we still don’t – no, well, the hospice are trying to find out from the hospital as to why, and they’ve found the doctor that’s changed his meds but they don’t know why it was. So they’ve put him back on some of it because he became quite ill after he came back because some of this stuff wasn’t being administered anymore. And it’s a whole kind of messy kind of change from the kind of community care side of things to the – well, it’s all NHS, isn’t it, but to the hospital side of things. 

Mark: They were asking me about his medication. And I was saying, “Look, phone the hospice, you’ve got the contact numbers, if you’re not sure about...” “But we’ve never seen this stuff before, you know, and he needs a different type of nebulizer and we haven't got the stuff to do that.”

[Laughs]

Mark: And then, then can you pop to the hospice because we haven't got the right size inner for his tracheotomy tubes, he’s got a different size to what we have here. 

[Laughs]

Mark: Okay, right. And then they found a box somewhere that somebody had left behind from something else but that’s only going to last two days so what are we going to do then? And this is all with me, right.

Helen: And then would he show the nurses how to do it [laughs].

Mark: And then was our – could I put these – they’d got all these bits of tube and filters and things for his neb – this, antibiotic nebulizer thing that he has, which is I gather a bit unusual but he does have, and they said, “Well, do you know how it fits together?” And I said, “Well, I think I do, but I wouldn’t – you’ve got to talk to somebody. If I get that filter in the wrong place maybe he doesn’t get any benefit from it at all.” “And why’s the tube going out the window?” I said, “I think it’s just so that you don’t breathe the antibiotics, but I don’t know, right, talk to the hospice.” So – and then they move him to a different ward and you go through the same all over again. So you end you don’t dare leave him.
 

Mark describes some of the challenges of episodes of hospitalisation.

Mark describes some of the challenges of episodes of hospitalisation.

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Mark: Because he goes to hospital and they have this, you know, slight – well, as a layman, a slightly inane principle that they can't accept anything that he arrives with as being medically fit, sound or reasonable to use. So they pull all his drivers out and they pull all the – and fit their own. And then have a debate about what was in the thing in the first place, so, so that then – you know, so they decide to give that through some different method. And that’s where it goes wrong I think. Because they won't – I don’t understand the kind of workings of the health service particularly, but there seems to be like this view that the community care bit – which is where the hospice sits in –whatever they do is fine but it’s not good enough for a hospital, or it’s not right for a hospital. So a hospital do something different. 

And then when he goes back then that isn’t right for the community care thing, so they have to change it back again. And that has to provide a level of angst and upheaval for him, whichever way he’s going really, and there’s this kind of air that, you know, the hospice expect him to be in a state when he comes back from hospital, whatever it was he went in for, which they expect to have to spend a lot of time and effort to kind of retrench if you like, or get him back on an even keel. 

Yeah.

Mark: And then he goes into hospital and they don’t understand what on earth the hospice are doing kind of approach. So it feels like… Nobody actually says that but it’s kind of feels that way. Or they’ll decide that something the hospice is doing isn’t necessary and not relevant so they stop it. But they don’t seem to do that in discussion with the hospice which would make sense to me, just a different doctor seems him one day and says, “Oh, he doesn’t need that anymore,” dump, and it’s gone, you see. And you think, well, do you know actually why he’s having it. Because I don’t necessarily, some of the things – like all this, if something happens while I’m there you’re conscious of what it is. But then there are other things that happen when I’m not there. Timings. And so you don’t know why he’s on a particular strength of a drug. I hesitate to give a reason even if I think I know because I might have got it wrong. You know, I’m not…

Helen: You know a lot more than you used to know, that’s for sure.

Mark: Problems with his – the last two things he went in for, was at Christmas he went in because he had what they thought was an abscess on his rig site – it turned out not to be but it was an infection. And the theory was that he was going to go in – the GP at hospice, spoke to somebody at the hospital, because he’s– his – the hospice is in a different area, Health Authority, to where we are, although it’s only fifteen miles down the road. So he goes to not my general hospital, which is up this end, but he goes to one in [name of hospital] instead. 

The theory – and he – the GP had spoken to the specialist, yeah, he’ll come in, we’ll look at the rig, see if it needs replacing or whether it’s still viable or not, put him on intravenous antibiotics to get – as a bigger jolt to get rid of the thing – because he’s on a kind of a low level antibiotic thing for his lungs all the time, and that seems to work. And he should be in and out in twenty-four hours was what they were saying. Well, he went in on the twenty-third of December, and he came out on the sixth, seventh of January.

And in the end the rig fell out of its own accord, because they were humming and hawing about whether or not to do something about that. They then decided he was that ill that he couldn’t – unless that healed up there was no point in doing anything further, so we were having a bit of a dousy about that. Because of his – and this was – I think the hospitals aren’t –he goes in for one particular issue, but he presents them with a range of complications. And he was supposed to go up to the gastric ward but they couldn’t handle the fact he’s got a tracheotomy, so he couldn’t go to the gastric ward.

He still has a trachy?

Mark: He still has a trachy, yeah. He doesn’t need oxygen, most of the time, when he’s got bad lung problems they give him an oxygen supplement at night, but generally speaking he breathes entirely of his own, own volition, whatever. , but he does still have a trachy. , they then decided to put him in a pre op ward, which is where he went, because he was, he was hours and hours in A&E while they were deciding what to do with him next. They put him in a pre op ward and then – he didn’t get there until eleven, twelve o’clock that night I think. And, and I was thinking, oh, well, they’ll settle him down in here and I’ll get home for a couple of hours. 

And then I’m sat there with him and they’re having a row, two doctors outside his room, right, because he was in an unsuitable place, it was dangerous for him to be here, they couldn’t look after trachys, it was a pre op ward, people arrive here, they’re not actually ill yet, they’re waiting for an op tomorrow, so they’re just – it’s like a hotel isn’t it, really, they’re turning up for a good night’s sleep before they have the op and then they go to somewhere they can. And then you think, oh Christ – they couldn’t find stuff for his nebulizer, tubing and bits and pieces for that they were scrapping around looking for things for that. 

And it was just a whole bad experience. Eventually after some toing and froing, they decided to move him forty-eight hours later up to, a head and neck ward, where there were people with trachys for all kinds of other things, but no gastro people. And then they’re coming in saying, “Oh yes, he’s here, and how’s his head and how’s his...” I said, “He’s not in for that, he’s in for his...” “Oh, oh, right, right. Well, that’s looking very nasty, isn’t it, we’ll have to get the doctor – get gastro down and see him.”

It’s what they can't deal with, complex needs, yeah.

Mark: Because that’s not our arena, you know. 

That’s right. Yeah.

Mark: And by the time they moved him there, all the stuff they’d found for him down in that ward – because this ward’s nine floors up in a different building – they lost it again and had to start all over again. And you’re thinking, you just make this so difficult.
Other families talked about how best interests decision were ignored. Family members were also sometimes put in the position of challenging decisions to admit, or not to admit, a relative to intensive care – and sometimes they were able to lobby to over-turn a best interests decisions not to give treatment because of their desperate pleas at the time. 
 

Fern’s partner was meant to be for ‘Do Not Resuscitate’ and ‘No return to intensive care’, but she successfully challenged both decisions.

Fern’s partner was meant to be for ‘Do Not Resuscitate’ and ‘No return to intensive care’, but she successfully challenged both decisions.

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When I made a decision to remove [his] DNR. Two days later, he had a cardiac arrest. That was his second cardiac arrest of his injury and that was – so the first cardiac arrest was in May 2010, the second was in September. Well the last day – it was like Bank Holiday of August, so that last day of August in 2010. Two days before the doctors had approved my request to remove the DNR – that I thought [partner’s name] had more fight in him. So two days later he had a PEG put in, his first PEG, he was a PEG, he had the PEG put in. And it got infected, his – had diarrhoea, he lost his electrolytes and his heart stopped. And it was very peaceful actually, there was no drama leading up to that. That whole day he was very calm and we said it was the best he’d looked because he had been – he obviously had no energy to fight, so he’d been very peaceful. 

And we got that call in the middle of the night that said, “You need to come,” and we came and we found out that his heart had stopped for eight minutes. We had been refused entry to ITU and we had to wait for over an hour before we got in. So during that hour, he had no blood pressure and they were keeping him alive by bagging him. 

The nurses, they did an amazing job, they stuck by him. He’d had something like two rounds of the [thud thud] pads and CPR and stuff and they got his heart going again but it was a very, very faint beat and he’d had no blood pressure and he had barely any resps of his own, and whatever was, it was very low. But he was alive and they kept him alive and we got up to ITU and I was just – you know what, we got in there and the nurses were like, “You know he’s not supposed to be here, right?” I was just like, you know, is it really the time for that. 

But, you know, we came out like five days later and we’re back on the ward. And so, for me, at that time I thought that was a great choice because before we spent ten weeks in ITU. The fact we were back on the ward in five days was like, whoo-hooo, I was so thrilled. And I thought we’d done the right thing. 

But, you know, looking back I don’t think I appreciated the signs of brain damage that were there. You know, [partner’s name] didn’t blink for a week. He didn’t blink, he didn’t close his eyes and what happens then, is when people die and they, they’re sort of not really alive for a few days they get jelly on theirs, it goes like jelly. And, do you know, these are things that now I can appreciate how bad it was. Do you know, he had no retina reaction thing, you know when the thing – the pupil dilates, nothing. And he was very, very ill and if I’m honest, he never recovered from it. He never recovered. 

Do you know, after the first cardiac arrest we had more signs from him. Do you know, I got him doing left and right with his tongue for yes and no in the August. And there were signs there, you know, he’d mouthed words and there had been a time when he shouted. “[Fern],” at one of the doctors. 
 

Fern talks about how much she prefers it that her partner is treated at the nursing home.

Fern talks about how much she prefers it that her partner is treated at the nursing home.

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I remember phoning one night and they’re going, “[Name], if he survives this night - I just can’t believe it will happen, I really think this is it.” And I go, “Okay.” 

Yes, he’s still going in the morning, yes he’s still going, [laughs] and he’s still here now. Do you know, it’s such ridic- you know we get – and they genuinely believe this is it. Do you know, and you look at him and you go, “Yes, this is it, this is it, I think we’re here, we can’t come back from this one.” He always does. 

Do you know [laughs] it’s shocking. And the – Doctor [surname] says, “We should’ve took him off the antibiotics ages ago,” he said, “because he’s doing so much better without them.” So much better without them, he’s doing brilliantly. He’s so much [laughs] stronger and he barely gets ill now, like he did before. Hardly at all and if he does it’s so minor. It’s nothing. But it’s definitely nicer to treat him at home. I’m so glad. Do you know what, I’m so glad we’re not allowed in the hospital anymore. What a relief. What a relief for them to tell us, we’re never coming back. 

Do you know like you never know when your next trip in there is, and for them to say, we’re never coming back, we’re never going back in [big sigh], ah. Isn’t that nice. Isn’t that lovely. 

But it’s so lovely to know we’re not going to go there. And it’s even nicer to know, he’s not going to die there. He’s not going to die in hospital. I know that, you know, he already did die twice in hospital and we resuscitated him. But [laughs] it’s not going to be a meeting at the hospital. The smell of the hospital. The ward room of the hospital. The nurses we don’t know. 

You know that nursing home, he’s been there – it’s coming on, I don’t know, if we went there in 2011 in the summer of 2011, so it must be approaching three years this year. It’s home. Home. It doesn’t matter that it’s not his first home, his home before that. Anywhere, if you stayed there, that would become home. Even if you work abroad for six months it becomes homes doesn’t it? Do you know, he’s been two and a half years, he knows the staff and he’s got favourite ones actually and he’s got ones he doesn’t like. Do you know like, we don’t see it as much now, but you do notice it. You know, and you think, I wouldn’t want him anywhere else, so what a pleasure that he’s not going to die in hospital. 

After all that time there when each time you go in, you’re never quite sure if he’s coming back out. What a relief. It’s such a weight off your shoulders to know you’re never going back. 
 

Michael had been moved out of the nursing home back into hospital while Imogen was away for the weekend. She had specifically asked that he should not be moved while she was away.

Michael had been moved out of the nursing home back into hospital while Imogen was away for the weekend. She had specifically asked that he should not be moved while she was away.

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I was furious. And I just said, why is he there? Nobody knew where he was at first and then I found him. I said, “Why can't he go back? What's happening?” And they said, “He can't go back because he needs a special ventilator”. And I said, “Why does he need a special ventilator?” They said, “Because his breathing isn’t good, he's getting pneumonia”. And I was just thinking, what does it matter, you know. But they insisted. So they kept him there a whole week and I just said, “I really want him back at the other place, I don’t want him here”. And eventually they sent him back with this huge machine and a big thing on his face which he couldn’t breathe, he used to choke with it. I hated it, I used to go in and take it off. I just said, “What good is it? Why, you know, it's just horrendous”. Anyway, that – 

So they were saving his life.

Yeah. And what for? They said- I said to one of the doctors, “What if I don’t want this anymore? What if we don’t want this, what do I do?” And that's when he said, “You'll go to prison if you do that”. Nobody said I had the chance to. 
From these family reports it seems that there is a need for better co-ordination for the care of these patients as they move between care homes and hospitals and better support for patients and their families in the hospital environment. It also seems that there is a need for improved understanding of ‘best interests’ decision-making among staff working outside specialisms where they regularly work with patients lacking mental capacity.

Last reviewed December 2017.
Last updated December 2017.
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