Family Experiences of Vegetative and Minimally Conscious States
Experiences on the hospital ward after ICU
After intensive care patients were moved onto high dependency wards and then out into general wards. They sometimes stayed on general wards for many months until they were well enough to move to a rehabilitation centre or long term care setting.
Some families we interviewed felt there had been generally good care on hospital wards and had positive memories of individual staff members who they viewed as key allies in looking after their relative at this point. At the same time, families were often concerned about aspects of physical care and about insufficient rehabilitation.
He did have physio when he was in the general hospital and in the rehab hospital. But it was, it was sporadic enough, maybe once, twice a week. [Sniffs] But it was vital that his positioning be done properly. And these are all things I didn’t know anything about. He had one pressure sore on the base of his spine and it took months to get rid of it. But because of an OT [Occupational Therapist] in the hospital, in – who actually is now a friend of mine, he came in one day and he pulled him up in the chair. He was only a thin fellow and [husband] is six foot tall and he pulled him – he said, “He really needs to be sitting up.” And he said, “I’ll go out and talk to them.” He was the OT. And ever since then, that pressure sore started to heal. And he only ever had the one. Because I used to watch him like a hawk. And I would be there when they’d be changing him and cleaning him. And he got a rash one time and I went, “Okay, how do we get rid of that?” And the nurse said, “This is what I think,” and we got rid of it in two days.
And those kind of things. And what I – I actually had a checklist when I would go into the general hospital, for the first fourteen months, I’d have a checklist in my head, is his bed turned on, is his trachy cup full, you know, has he been moved in the last two hours? So, you know, when was the last time he was moved? And I’d come home and I would take notes. So I’d have – I’d text the family, tell them what the story was, and then I’d use that text to update my notes. And I have about a hundred and twenty single line spacing pages of notes that I kept, from every single visit while he was in the general hospital and what was going on. And I can't read them [laughs].
You can't read them?
I can't read them now. No. We kept a calendar in his room where we’d write down his temperature that day and how his chest was and various other things. And you know, just monitoring him. And we did up sheets that we could write, he was, you know, he turned his head, he did this, that and the other. And as time goes on it seems that he has quietened, you know, his body is good in that he doesn’t get infections. He hasn’t had an infection for ages. What is very likely is that now that he’s heading for sixty-nine – sixty – yeah, sixty-nine in June, that pneumonia will be something that we’ll just have to watch out for. And – but apart from that, we’ve lost him…
And that’s the – you know, I know that’s the reality and I know it’s probably been like that since the beginning, but I didn’t care.
Some people we interviewed talked at length about problems with this stage of their relative’s care – contrasting it negatively with care provided later in specialist care settings. They felt that their relative had been ‘ware-housed’ and neglected, and that their own needs for information as a family had been disregarded.
Olivia: And it – for me, one of the big things, you know, looking back, was going back into hospital, like [Name] said, we have no communication with his mum, we can't speak to staff because there aren’t enough staff and they’re too busy, so we’re looking through hospital records of blood pressure and temperature and guessing and trying to read between the lines. And being told off for looking in the notes because they’re not our notes and we’re not allowed to look at them. So it was just a really frustrating – you know, you’re trying to come to terms with the situation, just an extremely difficult time. And I think for me, you know, if staff who are working, you know, maybe not on specialist wards who have, you know, patients, you know, with that minimum awareness to understand that families can't go in and have a chat with the patient and find out what’s happened that day, they have no clue what’s been going on. So just to have somebody to make the effort to speak to them and give them an update, even just to say, you know, they’ve been comfortable, they’ve had physio today. That’s all we wanted to know. Nothing else, just, you know, thirty seconds of, of what had happened or what had gone on. To not have that and to be trying to work things out for yourself was just impossible.
David: And then some nights you’d go away and she’d be full of sweat, you know, ragging around, chewing her teeth, and, you know, you’d sort of look back and, “See you, mum.” And then you’re leaving her there to God knows what all night. But then other times you’d leave her and she’d be sleeping and like, “Night, mum, see you tomorrow,” and it’d be fine. But obviously you go like this all the time. From visit to visit. Sometimes you get a scrap of information, sometimes you had nothing, you know, you’re – like I say, you were guessing and she was agitated and hadn’t been cleaned and – so yeah, like I say, we do keep coming back to it, because that was the most stressful horrible time.
More stressful than her death?
David: Even, even more—
Olivia: By far.
David: Miles more stressful than the end.
David: The worst thing was definitely hospital, and the just leaving her, the cleanliness issue was just, urgh. I had never come across anything like it in my life, it was disgusting.
Olivia: I think – and having no one to talk to on the ward. So going in, day in, day out.
David: You know on a ward there’s nurses flying everywhere, no one just to give you five minutes. And then she was put in this side room, there was – I wouldn’t say it was blood up the walls, but the walls were stained. You could see the room wasn’t that clean. And she, she – you’d walk in the room and it was, oh, the smell. And, you know, obviously my wife’s trying to clean and to do the best she can with limited resources.
Olivia: Yeah, don’t use dry shampoo on somebody who has a tracheotomy. Because they breathe it in and then [laughs]—
David: So yeah, just things like that that were – you know, mum would have hated, again. But, you know, you’re just doing the best you can with. And you shouldn’t – we shouldn’t have had to do that at all.
David: Oh, you know—
Family, it turns you into nurses.
David: Yeah, yeah, just became – became very aggressive going to the hospital, extremely aggressive. Like, you know, “Why’s it not been done?” You know, don’t take any – and it got to the point, if you don’t – if you didn’t shout, scream, cry at them, then nothing would happen, you know. So you had to really—
Olivia: He’d shout, I’d cry [laughs].
David: And my family, or our families, we’re not people that shout and scream and – you know, we’re not loud and – you know, we’re quite reserved really. And we’ve had to completely change our characters and become not nice people really, which was – you know, that’s how it had to be.
The end was a – was obviously a relief. For her and for us. But that hospital, yeah, was just horrendous. I’ll never forget it the rest of my life that was just – I’ve never been through anything worse, you know, than having to sit through that night in, night out, you know, and try and make the best of it. So yeah – so yeah. Sometimes now after all’s been done, you think, right, someone should answer to that, someone should – not pay for it, but, you know, that shouldn’t have happened. It shouldn’t have happened to us or her or anyone, you know. And obviously the purpose of what we’re doing today is to make sure it doesn’t hopefully again [laughs].
So the withdrawal of therapy even if it was a good decision was also quite symbolic?
Yeah, I think so.
I think because you suddenly realise that, they clearly think that this is pointless. That this – yeah. And I think it’s also – it seems like a decision that you’re not really – this is now a body rather than a person, because we’re not providing anything other than care for the body, we’re not providing anything that gives a perspective of productive life. So I think it’s quite symbolic in that way as well, it, – and it feels like a kind of relegation. And certainly feels like a sort of relegation to, this patient is no longer one for whom we can, do anything, other than simply support life. And therefore this is not very important.
And certainly I think in – depending on the different settings, the level of care for those patients who are no longer having, therapeutic intervention was quite poor in terms of, you know, you’d turn up and find that, you know, mum’s teeth hadn’t been cleaned and her hair was dirty and she just smelt. And somebody hadn’t cleaned up from, – you know, she had dribbled and people hadn’t cleaned up her face and this kind of thing. So, in the hospital setting in which we were told that there was going to be no more therapeutic intervention, it certainly felt like that implied a downgrading of care for the, for the remainder of the person.
The lack of support for patients (and their families) in the hospital setting after the immediate emergency can be profoundly distressing. These early experiences could also set the scene for families’ future relations with the health service – the ‘battle for care’ often began here.
Last reviewed December 2017.
Some families we interviewed felt there had been generally good care on hospital wards and had positive memories of individual staff members who they viewed as key allies in looking after their relative at this point. At the same time, families were often concerned about aspects of physical care and about insufficient rehabilitation.
Angela watched over her husband ‘like a hawk’ and valued the effective support offered by particular members of staff.
Angela watched over her husband ‘like a hawk’ and valued the effective support offered by particular members of staff.
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And those kind of things. And what I – I actually had a checklist when I would go into the general hospital, for the first fourteen months, I’d have a checklist in my head, is his bed turned on, is his trachy cup full, you know, has he been moved in the last two hours? So, you know, when was the last time he was moved? And I’d come home and I would take notes. So I’d have – I’d text the family, tell them what the story was, and then I’d use that text to update my notes. And I have about a hundred and twenty single line spacing pages of notes that I kept, from every single visit while he was in the general hospital and what was going on. And I can't read them [laughs].
You can't read them?
I can't read them now. No. We kept a calendar in his room where we’d write down his temperature that day and how his chest was and various other things. And you know, just monitoring him. And we did up sheets that we could write, he was, you know, he turned his head, he did this, that and the other. And as time goes on it seems that he has quietened, you know, his body is good in that he doesn’t get infections. He hasn’t had an infection for ages. What is very likely is that now that he’s heading for sixty-nine – sixty – yeah, sixty-nine in June, that pneumonia will be something that we’ll just have to watch out for. And – but apart from that, we’ve lost him…
And that’s the – you know, I know that’s the reality and I know it’s probably been like that since the beginning, but I didn’t care.
It is very challenging trying to get information when the patient themselves cannot give it to you, David and Olivia describe their experiences.
It is very challenging trying to get information when the patient themselves cannot give it to you, David and Olivia describe their experiences.
Sex: Male
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David: And then some nights you’d go away and she’d be full of sweat, you know, ragging around, chewing her teeth, and, you know, you’d sort of look back and, “See you, mum.” And then you’re leaving her there to God knows what all night. But then other times you’d leave her and she’d be sleeping and like, “Night, mum, see you tomorrow,” and it’d be fine. But obviously you go like this all the time. From visit to visit. Sometimes you get a scrap of information, sometimes you had nothing, you know, you’re – like I say, you were guessing and she was agitated and hadn’t been cleaned and – so yeah, like I say, we do keep coming back to it, because that was the most stressful horrible time.
More stressful than her death?
David: Even, even more—
Olivia: By far.
David: Miles more stressful than the end.
David: The worst thing was definitely hospital, and the just leaving her, the cleanliness issue was just, urgh. I had never come across anything like it in my life, it was disgusting.
Olivia: I think – and having no one to talk to on the ward. So going in, day in, day out.
David: You know on a ward there’s nurses flying everywhere, no one just to give you five minutes. And then she was put in this side room, there was – I wouldn’t say it was blood up the walls, but the walls were stained. You could see the room wasn’t that clean. And she, she – you’d walk in the room and it was, oh, the smell. And, you know, obviously my wife’s trying to clean and to do the best she can with limited resources.
Olivia: Yeah, don’t use dry shampoo on somebody who has a tracheotomy. Because they breathe it in and then [laughs]—
David: So yeah, just things like that that were – you know, mum would have hated, again. But, you know, you’re just doing the best you can with. And you shouldn’t – we shouldn’t have had to do that at all.
They ended up feeling they had to nurse David’s mother themselves and become confrontational to defend her.
They ended up feeling they had to nurse David’s mother themselves and become confrontational to defend her.
Sex: Male
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Family, it turns you into nurses.
David: Yeah, yeah, just became – became very aggressive going to the hospital, extremely aggressive. Like, you know, “Why’s it not been done?” You know, don’t take any – and it got to the point, if you don’t – if you didn’t shout, scream, cry at them, then nothing would happen, you know. So you had to really—
Olivia: He’d shout, I’d cry [laughs].
David: And my family, or our families, we’re not people that shout and scream and – you know, we’re not loud and – you know, we’re quite reserved really. And we’ve had to completely change our characters and become not nice people really, which was – you know, that’s how it had to be.
The end was a – was obviously a relief. For her and for us. But that hospital, yeah, was just horrendous. I’ll never forget it the rest of my life that was just – I’ve never been through anything worse, you know, than having to sit through that night in, night out, you know, and try and make the best of it. So yeah – so yeah. Sometimes now after all’s been done, you think, right, someone should answer to that, someone should – not pay for it, but, you know, that shouldn’t have happened. It shouldn’t have happened to us or her or anyone, you know. And obviously the purpose of what we’re doing today is to make sure it doesn’t hopefully again [laughs].
Sonia felt her mother was sidelined in the hospital, and especially disturbed when all therapies were withdrawn and she witnessed a deterioration in care.
Sonia felt her mother was sidelined in the hospital, and especially disturbed when all therapies were withdrawn and she witnessed a deterioration in care.
Sex: Female
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Yeah, I think so.
I think because you suddenly realise that, they clearly think that this is pointless. That this – yeah. And I think it’s also – it seems like a decision that you’re not really – this is now a body rather than a person, because we’re not providing anything other than care for the body, we’re not providing anything that gives a perspective of productive life. So I think it’s quite symbolic in that way as well, it, – and it feels like a kind of relegation. And certainly feels like a sort of relegation to, this patient is no longer one for whom we can, do anything, other than simply support life. And therefore this is not very important.
And certainly I think in – depending on the different settings, the level of care for those patients who are no longer having, therapeutic intervention was quite poor in terms of, you know, you’d turn up and find that, you know, mum’s teeth hadn’t been cleaned and her hair was dirty and she just smelt. And somebody hadn’t cleaned up from, – you know, she had dribbled and people hadn’t cleaned up her face and this kind of thing. So, in the hospital setting in which we were told that there was going to be no more therapeutic intervention, it certainly felt like that implied a downgrading of care for the, for the remainder of the person.
Last reviewed December 2017.
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