Family Experiences of Vegetative and Minimally Conscious States
Death and dying
The relatives of most people we spoke to were still alive, but several had died – from gangrene, pneumonia, other infections or from the withdrawal of the feeding tube. Although families often think that their loved one’s heart might simply stop, none of the patients had died from a cardiac arrest. This is in keeping with the common pattern for this patient group, who are not at particularly high risk of cardiac arrest long-term (see ‘Resuscitation and DNR’) – although some had arrested early on and been resuscitated.
Everyone hoped for a pain-free, dignified and peaceful end for their relative – and, for some, people, this is what eventually happened. But some deaths were very difficult to witness. Families often saw their relative struggling at ‘the very edges of life’ for example with recurrent bouts of pneumonia. This could mean that, even when the family was hoping that the person would recover, they were relieved when the person was finally ‘at peace’. (See ‘Repeated life-threatening incidents’).
From our interviews it was clear that good palliative care could allow for a ‘gentle’ death. It was also clear that witnessing a relative die after the feeding tube was withdrawn was not necessarily ‘worse’ than witnessing other ways of dying, such as with pneumonia or gangrene.
Morag’s father and Sonia’s mother both died from pneumonia, Emma’s mother died after ‘her body shut down’ and the feeding tube became ineffective. Here they talk about what it was like to witness these ways of dying.
Morag found her father’s death from pneumonia very traumatic.
Morag found her father’s death from pneumonia very traumatic.
Did he get good palliative care? Do you feel they were caring for him in terms of pain relief and -?
In the last few days, yeah. I mean, you always kind of wish that they’d give more sooner basically because when you know, but obviously the law is the law but, you know, at that stage, when somebody is so clearly suffering, you know, and you know this is it, the whole body’s packing in and the organs are packing in and, you know, at that stage I think maybe, you know, just that extra injection or something, just that bit sooner, ‘cause two and a half days is an awfully long time.
An extra injection to sedate them, so that they don’t wake up.
Yeah.
Yeah.
You know, ‘cause it was just horrendous. It was absolutely horrendous.
I think it could have ended sooner, it could have ended sooner. It was a long, painful, slow death. In those last few days, it needn’t have lasted. You know, it was – you know, his organs, but there was no coming back from this, this was the end. We knew it was the end, and to watch somebody stopping breathing and then just that, oh, like a gasp then and, you know, we were crying saying “that’s it, he’s gone.” And then it could be thirty seconds, you know, and oh, then there’d be a gasp and then he’d kind of breathe again and then he’d get back into a rhythm and then, you know, it could be half an hour, it could be an hour, it could be, you know – and then he’d stop again and we’d all go “that’s it, he’s gone now” and we’d cry and then another gasp. And for days of that, it was just, you know.
Sonia reflects on a decision not to treat her mother’s pneumonia, and the death that followed – she found it very difficult to see her mother struggling to breathe.
Sonia reflects on a decision not to treat her mother’s pneumonia, and the death that followed – she found it very difficult to see her mother struggling to breathe.
I think I stayed about an hour and a half, she was very, very, obviously distressed by the fact that she literally couldn’t breathe, and so when people talk about, you know, letting the person die of pneumonia, it’s actually, –it’s difficult to tell because clearly also the person has a high dose of morphine so what you may be seeing is a kind of physical discomfort that’s not actually felt as pain necessarily, but clearly she was struggling to breathe, and struggling to breathe was actually making her, as far as she could, move quite, – I wouldn’t say violently because she didn’t have that much movement, but she was clearly very uncomfortable, so I asked that they would, kind of suction her chest. And they did do that quite swiftly and she was a bit more comfortable after that. But, it was just quite striking that if, – that it wasn’t a particularly pleasant passing I don’t think, that there must be a moment – the person must actually feel very, very ill, and that the, point at which one becomes sufficiently unconscious not to be uncomfortable may be later than, than – well, certainly than I had assumed. But I suppose one doesn’t think very much about – I’ve never really thought very deeply about what it means to die of pneumonia without antibiotics as it were, because in effect that’s what you’re, suggesting or accepting that the person will die of.
So that although they have painkillers, unless the morphine is at a high enough dose for that person to be, pretty well out of it, they are going to feel the discomfort that goes with not being able to breathe and in effect drowning in your own phlegm. So that was not terribly pleasant. But I did stay for quite a while and hold mum’s, hand until she seemed to have gone off to sleep, though whether that was actual sleep or whether that was again just a kind of clicking out of, you know, I realise that you’re here, – she was mumbling stuff, I don’t know what she was trying to say. But I was certainly sort of, – well, what do you say in that situation? But certainly sort of, you know, trying to make positive noises and not saying, “Actually mum, you’re dying, don’t worry about it,” but actually to say, you know, “It’s going to be all right, they’re going to, – you know, things will be okay.”
Emma’s mother died after her body ‘shut down’ and the feeding tube was no longer effective – she found her mother’s ‘withering away’ very distressing.
Emma’s mother died after her body ‘shut down’ and the feeding tube was no longer effective – she found her mother’s ‘withering away’ very distressing.
So did your mother have any kind of – that, that decision and the tube coming out, did she have other infections at that point or—
I – yes, I think she had. I think she had – I don’t remember exactly. I think there was a point that the PEG was just not – couldn’t be used, I can't remember exactly what, I think it was just [intake of breath] – I don’t know what had – I don’t, I don’t think it was very good.
And did they write to you, ring you, how did—
Ring, ring.
Right.
Yeah.
And can you remember what they sort of said to you?
I think the doctor was just very nice and just said I – you know, this – I think – I said before, he seemed to know that – so for whatever reason, I think he would go – I think he went once a week to check. I think that’s the standard sort of protocol, or once a week, or I can't remember. But, you know, regularly. And I think this was the sort of last – I know there’d been problems with the PEG and I think this was the last issue. She’d had terrible sort of infections I think, and they’d tried – I think had they tried to put it in another place or – I can't remember what had happened, but I think whatever, this was the last resort.
And I think also – he was very nice, he was a very gentle man, and had said, “This is, you know, this is not going to be long.” And I think it wasn’t just the PEG, I think the body had – however that happens, but I’m saying in my layman’s way that it was just shutting down I suppose and, you know, couldn’t take anymore. And he – yeah, he was a very, very nice chap actually. And just sort of said, “I think it will be...” you know, I think it – she was – it was longer, she lived longer than he said. Stubborn to the end. But, yes, that was – you know, that was not nice I have to say, yeah, I didn’t – that was not pleasant. You, you know, I wished there – I don’t believe in euthanasia but I [laughs] you know, you do think, gosh, crikey, in this situation – that’s not good. That’s not good.
What was not good about it?
I think it was just that dying because of – you know, just your last semblance of life is withdrawn from you and you’re just a piece of meat on the table withering away. And literally withering away, it is really quite an unpleasant experience. Not nice at all.
So you saw her become thinner?
Hmm. Yes, it’s not, not nice.
And did her face change?
Hmm. Yes. Yeah. Yeah.
So you don’t believe in euthanasia, but in this situation maybe for her it would have been kind or—
Well, I – yeah, kinder I think. You know, it’s – there, there comes that point I think when you actually realise that person isn’t that person anymore. That this person – it’s just a body, just a body on a slab, almost. The bed could have been a just there, as much as serene and peaceful, but this sort of [intake of breath] sucking of life was just awful. I went twice to see her and the first week obviously wasn’t so bad, the second week was not particularly good. But – yeah. Yeah, that was not – and that’s the only thing, you think, oh please, you know, deal with this, because that should – that’s not nice, it isn’t nice. And it’s just not – it’s not nice for me but, you know, we don’t know, do we? We don’t know all the answers. We don’t know the feelings. As much as we think, you know – you hope that the body just is internalising and that’s it, it’s non functional, knows no pain and there is nothing. One, one hopes that. But I think that situation is not –I wish there could be something that could stop that. I don’t know what either.
So it left you with memories of what she’d been like at the end that were difficult?
It sort of – that – no, I chose – that – I’ve only just sort of thought about that now, but I don’t actually think about that anymore. That’s not some – I think that was – perhaps the body’s very clever and – I think also it’s because that wasn’t her. I didn’t – as much as for three years that wasn’t her [laughs] but there was, there was some, some resonance of my mother, because she was alive. And I think I didn’t see that as my mother, you know, that – those last two days. I didn’t see that last bit as Kate. I did not, it was just a person going through this event. And I didn’t – you know, I did not think, “Oh that’s mum.” That was –I didn’t think that. Because it just takes that away. I think maybe your mind just says, well, we’re not going down that bit. We’ll do that nice bit there. Perhaps it’s a very good caveat, you know, that’s fine, you’ve got the bricks here, you do that bit, and we’ve got you behind.
Imogen asked for the feeding tube to be reinserted. He eventually died some time later with untreated gangrene.
Imogen asked for the feeding tube to be reinserted. He eventually died some time later with untreated gangrene.
Had you – if you had realised, would you have been willing to have starved him to death?
That's a good question, I don’t know. I don’t know. You see, I'd have rather- I had hoped that once you make those agreements and you all agree this is not right for somebody that there was a better way of dying. I didn’t know what it meant - that the only way was starvation.
They didn’t explain that?
No. They just said, we'll give- well, if they did I didn’t understand it, because everyone said, “he'll die quickly”. They said, “He’s 72 years old, he's had a heart attack, he's had a stroke, and he's brain damaged. He'll die”. Everyone. But they didn’t know what a strong physical person they were dealing with. That his heart may have been a bit weak, although he wasn’t aware, you know, we weren't aware that he had anything wrong with his heart, if it had have been there. But his lungs and everything else were so strong, that I don’t think they thought a 72 year old man would live on. So I don’t know whether- you know, if you ask how they told me, you know, “we'll now-“, yeah, they must have said, “we'll withdraw food” but they wouldn’t have- The implication was that it would happen so quickly it wouldn’t matter. So when it went on and on and on and on I just – I couldn’t bear it.
And it dawned on you as he got thinner that that's what they were doing - that it was starving him to death.
I must have realised it at some moment in that scenario. Now they'd moved him up. Because he was… He'd just been put in a little side ward, near to where all the emergency- you know, where all this machinery had been for people coming in with accidents that were real emergencies, they'd just put him in a little room, but then when he didn’t die they didn’t know where to put him I think. So eventually they put him upstairs in another ward and they gave him a beautiful little private single room overlooking the gardens a bit, really nice, with the sun streaming in, where he continued to not be fed and nothing to happen. And then I think I got- I got the feel… As the weeks went on, I got a feeling that somebody wanted the room or something, that it wasn’t right that he was there all the time. But I didn’t know- Nobody really explained what the options were. And then there was this one doctor said, “What is happening?” I remember him saying to another- two doctors saying to each other, “What is the programme here, or what's –“ Because I think they must have started feeding him. I must have said something and suddenly he was being fed. But nobody knew quite why he was there. Because he had been put there to die, and now he wasn’t dying.
And then when he got the gangrene, they said, “Your choice is that you have the leg amputated, but that runs the risk that it'll go from one leg but it'll go into the other leg. Or leave it”.
And… ?
And he'll die. … And by then I just said, “I don’t know”, I think I- Yeah, I said- I mean, the gangrene was horrible. Have you ever seen gangrene? It's so horrific. It's like two years earlier he could be starved to death, and now he was going to have to die of gangrene. I mean, what a horrible thing to die of. And he just looked at me and said, “Would Michael want that?” And I just said, “Michael wouldn’t want any of this”. And then he said, “Well, there's your answer”.
On the birthday, they did the big birthday at the [sighs] hospital – in the care home, with all the balloons and this horrible mushy cake and we all sat round the bed and I was so worried that someone would sit on or move where I knew he had the gangrene. And then we had this horrible meal again where we pretended – the number of meals in two and a half years where you pretend things – you know, so called celebratory meals that are full of – I suppose they're full of something lacking all the time. Like they're full of the opposite, but you're all pretending that you're still celebrating. And the next day I had promised my daughter to go for a six o'clock film. So I said, “I'll pop into see Dad beforehand”. And I went in and I was reading – I took with me the film guide. And as I was looking at it – we were going to go for a six o'clock film and it was about five o'clock and I rang – and I suddenly realised the film wasn’t on at six, it wasn’t on until eight thirty. So I rang her and I said, “Oh we can't see the film, it's not on till eight thirty. So we'll go to the late one or we'll go and see it another day”. So I sat there and suddenly he just gave a big sigh and died. And I was sitting with him, and nobody had called me or anything. And I wouldn’t have been there if the film had been on at the right time.
Did you know he'd died?
It was the way- Yeah, it was just the way he sighed. So I just cried. And I held him. And I sat with him for about an hour before I told anyone. I didn’t want the bloody nurses coming in and I didn’t want to phone anyone. And it was really special. Yeah, that I was there. And it was all right, yeah. So then I just rang them all up. And in fact, he died the day after his birthday. And we buried him on my birthday [laughs]. Because it was – that was the way it fell out, the number of birthdays in this sorry saga.
Imogen says that she can’t give any advice to other families – but she sometimes regrets saying “you can’t starve him to death” and she wishes there had been other options.
Imogen says that she can’t give any advice to other families – but she sometimes regrets saying “you can’t starve him to death” and she wishes there had been other options.
Good luck [laughs]. I don’t have any advice. Just good luck. But I don’t know, I don’t know what I would have done differently. I suppose, you know, if I go back to that moment where I said, “You can't starve him to death”, I did regret it sometimes. But I obviously felt it at the time. I just couldn’t bear to let him starve to death. I guess I would have preferred them to have said to me, “You've made that decision, now on Tuesday we'll give him- or Wednesday or whatever day you want, you can all come round and we'll give him an injection”. You've made that decision. Why wait and wait and wait for it to happen. If when you withdraw – for all the reasons that you've agreed it, why then prolong it happening? And then it would have been over.
David and Olivia found the idea of death from ‘starvation’ disturbing, but found in practice it seemed ‘peaceful’ and ‘dignified’ after the court approved removal of the feeding tube from David’s mother.
David and Olivia found the idea of death from ‘starvation’ disturbing, but found in practice it seemed ‘peaceful’ and ‘dignified’ after the court approved removal of the feeding tube from David’s mother.
David: No. It’s—
Olivia: That was thought it was going to – it was everything you hoped it would be and—
David: Yeah.
Olivia: …and nothing of any of those images or thoughts that you kind of—
David: And another thing as well when – I think I touched on it earlier – is when, you know, the breathing apparatus was going constantly and that was the noise of being around mum. And when it was turned off and when it was quiet, and when I want to give her a hug and tell her it was all right, it was perfect. It was peace. It was definite peace, you know. So, yeah, very, very, very important to have the right environment and everything in place to keep, you know, to keep everyone calm and cool and let it be, yeah, peaceful, dignified, you know, end really. What it should be, you know, so – so yeah, and that’s what we achieved, like I say.
Cathy is very distressed by the fact her brother took so long to die and is distressed by how he died.
Cathy is very distressed by the fact her brother took so long to die and is distressed by how he died.
But he was making noises. Which again may well not have meant anything, but were just still horrible. …And I think I just did think it was really wrong, I just thought it was really – it’s back to that thing, I understand the idea of not setting legal precedents around it, but it just still seems to me that on an individual case basis, it’s just such a wrong thing to do, revolting thing to do. Again, you wouldn’t do it to a dog, would you? So just the fact as – there’s just something I think really horrible about it. In a way that I don't think – I don't – so for me, if it was sort of an injection or something I wouldn’t find that a horrible thing. So I – for me, it wasn’t the killing so much as the manner of it that I just thought was awful.
And it’s revolting because—?
It’s just such a horrible idea, isn't it? That you’re starving someone. That’s what it feels like to do it, it feels like you’re starving someone to death. Precisely because they can do nothing about it. It’s just so – it was a barrier as well to wanting to do it, so – which I think shows how desperately we wanted to do it, that we were prepared to do that. I think we would [sighs]… I real – and I’ve yet to ask the question about this, but it occurred to me – because presumably – because his epilepsy was so terrible, presumably – and he had – and he carried on having his epilepsy medicine obviously because it would have been so awful if he’d died as a result of an epileptic fit. But presumably on the whole withdrawal thing, we could have just stopped giving him his epilepsy medicine and he’d have died in some awful – but again, we wouldn’t do that, would we, because it was horrible, so then why fore is it – then why [laughs] – I just urgh, ugh, the whole thing, awful.
But again, I mean, I just probably wasn’t in a fit state to process it really. I don't [sighs]…– my mother didn’t find it awful. She felt really pleased that, you know – it was me that found it difficult. She felt really pleased that Matthew would come home, she felt like she was really glad to nurse him, she felt like she was fulfilling a final duty to him... But I just found it agonising.
Helen describes her son’s death after his feeding tube was withdrawn as peaceful, calm and dignified.
Helen describes her son’s death after his feeding tube was withdrawn as peaceful, calm and dignified.
So in the end seeing him dead was not as heart breaking or disturbing as you’d thought, after all those years of him being in a vegetative state?
No, he finally looked peaceful. And he hadn’t looked peaceful before. It’s the difference between seeing a child asleep while it’s having a nightmare and a child asleep resting peacefully. It’s just the look of the face.
So the eye opening turned to more of eye closing and—
Yes.
Yeah.
Yes. I thought that he slept his way towards his death. My daughter, who’s quite robust, said that probably he’d got so many drugs inside him he was as high as a kite [laughs]. But certainly Christopher’s nursing, as he went towards his death, was far calmer, and his life was far calmer and far more peaceful and far more dignified than when he was being actively nursed. Which I thought was interesting, and I wouldn’t have believed that if I’d not gone through the process.
Kevin felt that there was more love in withdrawing his son’s feeding tube than in letting him be sustained indefinitely in a permanent vegetative state.
Kevin felt that there was more love in withdrawing his son’s feeding tube than in letting him be sustained indefinitely in a permanent vegetative state.
Miggy feels it was courageous to take responsibility and decide to ask if the feeding tube could be withdrawn
Miggy feels it was courageous to take responsibility and decide to ask if the feeding tube could be withdrawn
Last reviewed December 2017.
Last updated December 2017.
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