Family Experiences of Vegetative and Minimally Conscious States

Rehabilitation centres and care homes

Most patients in a prolonged vegetative or minimally conscious state will eventually be transferred from hospital to a rehabilitation or long-term care setting. A few families also try home care (see ‘Caring at home’). Royal College of Physicians - National Guidelines outline the appropriate early pro-active management of these patients (e.g. including several months in a specialist assessment centre) and there are clear guidelines about standards for specialist nursing homes (see ‘Resources’).

It is distressing and poor practice, if, attempts are made to discharge patients to inappropriate settings. One mother, for example, was horrified at the suggestion that her teenage son should go to ‘an old people’s home’. Families also often identified huge gaps in provision or said they wished that specialist rehabilitation services were provided for longer periods (or earlier).
However, the move out of hospital and into a rehabilitation setting or care home was often a time when families felt the care for their relative improved.

It was a huge relief for David and Olivia to finally get David’s mother out of hospital and into an excellent care home.

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David: So they put her into a side room, and all that time her hair was greasy, she stunk, her toenails were massively long. The bed was dirty most of the time. So we were then fighting the NHS staff, nurses, to keep her clean and get someone to – you know. So from going from this proud mother, mother-in-law, to being something you wouldn’t leave an animal like – so—

Olivia: I think for us that was one of the big things, being put on a general medical ward.

David: When she was as, you know, ill as she was.

Olivia: They didn’t have the staff to be able to care for her properly.

David: To care for her, yeah.

Olivia: So we had to go every day, you know, to wash her and—

David: And make sure she was clean. And just say, “Hey, this needs doing, hey, this needs doing.” And sometimes, you know, you’d even come into the room and she’d be choking like mad on phlegm on her lungs, and, and there was no one to give her suction. So you can imagine, you know, her eyes coming out of her head, sweating, it was just – so then whilst we were not only grieving her, but then fighting for her dignity as a woman to be, you know, to be kept clean, as just a basic thing. It was disgusting. So we’re very, very mad about that, that really sort of topped us for a while. And like I say, we just kept a vigil, someone went every single day. So yeah.

How long was she in the general ward?

Olivia: Six months.

And then to the care home?

Olivia: Mm-hmm.

And was it better in the care home?

David: Yeah, yeah. The care home was just five star. It was like a beautiful hotel, a lovely room, staff, as soon as they got there they couldn’t believe the state she was in.

Olivia: Before she even went there they wanted to get their hands on her, just to wash her hair [laughs].

David: Oh it was – the sense of relief when she went there was just amazing, you know, just to, you know, to be able to go near her and not smell. But it was just – obviously it was just a – it was a terrible, terrible time in the whole thing. And then when she got to the care home she instantly – all this massive sweating and being erratic all the time, she seemed to just be a lot calmer, didn’t she, she slept for a long time, things like that. And that – we kind of thought, you know, maybe she knows, maybe she – you know, but – and then you sort of get to the care home and the carers are there, and, “Oh, your mum’s here, she’s had a lovely day, she’s been great and she’s been settled,” and she’s been this and she – you know, you’re getting this flood of information. So instantly, you know, you’re calmer.

But then the care home staff kind of obviously – you know, that’s their job, to care, they became quite attached to her, and would speak to us about her as if she was with us. Which obviously we’d decided months if not a year or so ago that she wasn’t with us and we knew that. And it was kind of a bit of a tag thing really [laughs], they would say things, “Oh right, right.” And then you’re thinking, no, no, she, she – you know, that doesn’t happen, she’s not—

So as though she was communicating?

David: Well, yeah, they would say things, you know, and they said about this crying and things like that, but by that time we kind of – we worked it out that she wasn’t there, you know. So – but yeah, the care home, they were just so good with her, and respectful of us, and of her, and treated her like a lady again. Not like a piece of meat on a, on a board, you know. So—

Olivia: Yeah, I think she actually – just after a few months of being there she looked younger somehow, they’d moisturise her face and—

David: Oh, her skin was brilliant.

Olivia: They’d cut her hair and she just looked—

David: She had a hair appointment every, you know, every couple of weeks. Which mum did anyway, so it was kind of – those little things just meant everything, you know, as a family as well. We could visit and—

Olivia: Not have to worry.

David: And a lot of our time visiting would be, you know, “Hiya mum.” Give her a kiss. Sit round the bed. But it would be almost like a counselling thing really. We’d all sit there and go, “How are you doing? How are you doing? You know, she’s been all right.” You know, so, probably as a family we probably never spent more time together [laughs] all round one bed. But yeah, you know, it just – well, it just calmed things down for a while, because we’d been through such an intense period, everyone could kind of put their head back on their shoulders a little bit and get on with things again.

‘Good care’ was appreciated by those we spoke to. Families valued the skill and dedication of a wide range of staff, good team work and communication, the provision of therapies and treating the brain injured individual with dignity, respect and ‘as a person’. They also valued staff listening to their concerns and taking on board their knowledge of the person. ‘Bad care’ delivered none of these things.

Here a range of people give their views about what they valued in ‘good’ care and what concerns they had. Reports from families about the quality of care varied – and many still felt in a ‘battle for care’.

Helen has seen a range of care homes – and emphasises the importance of the quality of the staff, rather than the buildings.

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So, care homes, can you say a bit about your experience of care homes?

Yes. I think care homes are like schools. There are some really good ones and there are some real shockers around. And the ones that you finish up dealing with, very often it’s a matter of luck. Christopher was nursed in two care homes. One was modern, bright, it had all the state of the art rehab equipment. But both the staff and the management didn’t really care. And that made talking to them extremely difficult because they were either offensive or aggressive, whatever was said. And it almost meant that simple things like hygiene or the placement of his wheelchair or whether the sun was in his eyes or not, none of those were factored into his care. And we couldn’t talk to either his principal carer or the matron or the management because they didn’t want to know.

The second care home he was in was a converted Edwardian house. With all the problems that that involved: small kitchens, antiquated plumbing, high ceilings, the drafts whistled in all sorts of places. But the staff were absolutely top hole. They cared. And I think any care home is only going to be as good as the carers working in it. And if you have a problem and the manager of the care home says to you, “Right, well, we’ll discuss that at the review meeting in a fortnight, now if you don’t mind I’ve got a teleconference.” [Makes whooshing noise] It’s completely different to the manager patting your hand and saying, “Oh dear, come on, I’ll put the kettle on and you can tell me about it.” And at the end of the meeting saying, “Look dear, if you’re worried just pick up the phone any time, somebody is here twenty-four hours a day. If you can't sleep, call us.” You probably won't feel the need, but just knowing you can do it.

Morag was unhappy with the care her father received because there was no interest in being proactive with him.

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Nobody really came to look at him, as far as I can remember. Maybe it’s just – maybe it’s false representation on my part, but I can’t remember. He was, as I say, kind of the three of them, [name of a second patient], [name of a third patient] and Daddy were kind of left there to rot as far as I can – which, you know, not in a cruel, vindictive way, you know, but in the basic care kind of way, just in a – you know, the staff would shrug their shoulders and say it is what it is, he is what he is and, you know, he’s never going to come from here. And that was it. So it was the bare minimum of changing the catheter, changing the bed sheets and making sure that his feed was changed, you know, when it should be. But otherwise, there was nothing, there was nothing proactive, there was nothing innovative.

He was such a proud man, he would have hated it. He was a really proud man and he was very much, you know, the man of the family, you know, he was in a caring profession, he always looked out for other people and he was always doing favours for other people and, you know, doing stuff, and he had so many friends, he was a very giving person, and I can’t – you know, he would, just to be there, just lying there anyway and having, you know, everybody put themselves out for him, he would have been mortified and that’s why sometimes the attitude of the staff was he was very dignified, “so don’t talk over him like he’s a piece of meat or like he’s not even there; or like he’s already dead because he’s not.” You know, “and take care when you’re washing him and shaving him and, you know, he’s a living, breathing human being.” And “you might not believe that he can’t hear, but he can.” You know, they say the hearing’s the last thing to go and the first thing to come back. And that’s certainly our experience, definitely our experience.

And so looking back, who he had been before, you think he would have hated it and been mortified?

Yeah.

But once he was in that state, did you feel any sense of what?

I mean, to start with, there was just no reaction at all for the first kind of year or so and then afterwards, you know, I’m sure there were days where, you know, we would have thought, you know, “this is just too cruel and he shouldn’t suffer like” – well I know there were days when we thought, you know, “nobody should suffer like this,” but it was his decision. It wasn’t our decision. You know, he decided – the machine was switched off, that decision was taken away from us and he carried on breathing and we just gave him the basic human right of food. You know, we didn’t do anything else, there was – we didn’t – there was nothing we did to kind of, you know, keep him alive for our own selfish reasons or anything like that. We let nature take its course and we didn’t steer it one way or the other. We didn’t say “okay, we’re going to stop this now and we’re going to stop his feeding” and also we didn’t say “okay, we now are going to do all this kind of,” I don’t know snazzy research, you know, use him as a guinea pig. We just kind of let him do what his body – let his body do what his body did, basically. And he was a strong man and he was a fighter and he had a strong body. And it was awful to see, from him being such a physically strong man, to withering away, you know, and his whole body, his hands and his feet and his legs and everything was all sort of twisted and contorted and he was – he had a round face, I get my fat face from my dad, you know.

His family had a series of concerns about Theo's care, including being unhappy about the infections he developed.

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Peter: They weren’t doing physio, they weren’t doing no physio, they weren’t giving any input at the home.

Andrew: And it was always sad.

Peter: Yeah.

Andrew: Very sad, you know.

Olga: You know, every time we used to go he used to be asleep, innit?

Andrew: Yeah.

Olga: It doesn’t matter what time, day or night.

Andrew: And I walked in another time they had him in the room, wasn’t it, with four or five other people. [My brother] was there like that, everything was on the floor, there were two people at the desk, right. And I walked in, I said, “What’s going on here?” [My brother] is like that, he was full of saliva. All the bits are on the floor what he’s pulled off. And they’re like reading newspapers and watching telly. I said, “What’s going on?” Oh, there was murders that day.

Andrew: The care home was very, very good.

Peter: Very – until they started changing staff.

Andrew: To begin with, right. So one Sunday when I was there, I noticed the nurse was putting water from the sink into his oxygen thing. And I thought, ‘that can't be right’.

Peter: It’s a cold thing and you use water.

Andrew: And I thought that wasn’t right. And it stuck in my head, so when my – when he had to go into hospital, I asked the doctor, and I told him, and he said, “No, it should have been proper boiled water or...”

Peter: Yeah, yeah.

Peter: The thing was, right—

Andrew: He was getting a lot of infections at that time.

Peter: No, that’s when they started the infection.

Andrew: Yeah.

Olga: Yeah.

Peter: But the thing was, right, up to then he got to size six trachy and he was off the oxygen—

Andrew: He was off the oxygen for a year, wasn’t he?

Peter: For the – during the day, yeah. Because I pushed them, because we took him to my mum’s memorial and I noticed he didn’t need the oxygen. And they did it and, and because they were using tap water he got infection and it set him back a bit.

Andrew: That set him back a lot.

Fern is pleased with the hospice involvement in her partner’s care.

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And now he’s always comfortable. He has pain patches and he’s just like ahhh. But he doesn’t have physio, because it’s under this hospice thing you don’t do anything that’s unnecessary, right? For [partner’s name], he’s very dystonic, do you know, he’s got muscle spasticity, it’s painful, so to give him physio, yeah, he’s like – he’s – when he’s ill it’s a lot less now, you know, it’s probably about there. Because he’s not got the energy to bring it all up anymore. But, you know, to stretch him out and do all these things, you’re only really doing that if you’re trying to keep them, you know, for a purpose. There’s no purpose. So you’re causing him pain unnecessarily. So he doesn’t have physio now because it’s painful and we want to make him comfortable, and you’d only do that if you’re keeping them stretched and working because you’re – you want to work with him or something, it’s pointless, it’s pointless.

There are national guidelines (see ‘Resources’ - Royal College of Physicians 2013) giving clear guidance of standards of care required for severely brain-injured patients. Inspection reports for are available online - from regulatory bodies, such as, in England, the Care Quality Commission.

Last reviewed December 2017.
Last updated December 2017.