Family Experiences of Vegetative and Minimally Conscious States

Guilt and regret

Feeling haunted by guilt was a common experience for many people we interviewed. A few felt guilty about the injury itself (‘If only I had been with him that night’), but mostly they felt guilty about what had happened since then.

It often seemed to be a ‘Catch 22’ situation. Parents felt guilty for not spending enough time with their injured teenager in hospital, but also guilty for neglecting children at home, wives felt they had abandoned husbands because they were so focussed on the needs of an injured brother, adult sons felt guilty for focussing so much on their wife in the care home that they were unable to support their own elderly parents. People also described feeling helpless - at a loss about what more they could do for their injured father, sister or son. Many of the people we spoke to regretted past decisions to intervene to save the patient’s life, at the same time as wondering if more could have been done to help the person recover, or to reduce their pain or distress.

Nik feels she is not ‘doing enough’ and perhaps she should visit her father every day.

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Nik feels she is not ‘doing enough’ and perhaps she should visit her father every day.

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That – just that I – I can't – that I don't feel like I'm doing enough. I know I can't do anything.

And what would you be doing?

I know, but I just don't feel like I'm doing enough… for him. I feel like I should be up there more. I feel like I should be up there every day. I feel like I should be spending more time there. It's just – and I go up there as often as I can. Like maybe that's once a week or maybe once a fortnight. Sometimes I'll have a bad day and think, "Oh, I can't – I can't go up there today," and I feel bad that I haven't gone up there. It – it's just the constant guilt that – I don't know what I – what more I could do, what I could do.

And if somebody came to me in the same situation and said, "Oh, I do this with – with my father or my sister or my whatever," then I'd go, "Oh right," and I'd have ideas then and I'd do them. But it's just like I don't know where – I don't know what I can do. I do –I don't know what to do. And I want to do more. I want to be able to – to feel like I'm doing something, whether that's just taking him out for a walk or whether it's just – well anything. I just want to feel like I'm doing something.

Yeah, I've had loads of dreams. And I think, "Oh my god, that's his way of coming to me now, in my dreams." Loads of dreams of just like normal stuff. Not – just sitting there having a conversation with him. Loads. And I think, "Well, god, that was so real. That dream was so real," when I wake up, I just want to go back to sleep, go back to your dream.

Do you ever forget for a moment when you wake up that that isn't reality and have to re-remember that—?

Like for half a second, but you think it's true. You think, "Oh," and then you – then you realise, no, it's not. And then you think, "Oh, I'd better go up and see him today," like it's back to normal again [laughs]. Yeah. I should be – I feel like I should appreciate the fact that he's still alive. I feel like I should, but I don't. So then I feel guilty again then.

Sonia regrets agreeing to an operation to save her mother’s life, but also wonders if more could have been done to help her mother before she died.

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I think the worst decision that we made was to, was to intervene. But, as a number of close family and friends said, the what-ifs just lead to madness really. Because you can't answer them. And you can only, you can only make – because there isn’t a right or wrong, there isn’t – there isn’t a clear cut answer one way or the other, because we don’t know. Had we said, “Actually, don’t intervene,” given that operation was being offered only sort of three days after she’d had an enormous stroke, you haven't even actually processed the fact that the original, sort of status quo has gone. And so it becomes very difficult I think – you’re, you’re given no time, undoubtedly because it’s a medical emergency, you’re given no time to react to the first kind of climactic event before you’re required to make a kind of, life or death decision.

And I do feel that, you know, we could have been, – I – well, I don’t know enough about it medically, but I do wonder whether there would have been ways of, of kind of delaying – I presume not if they had to telephone us on a mobile phone and say, “She will die if we don’t intervene.” but I do think it would have been in retrospect the better decision.

In effect saying yes was only a choice to delay death, and potentially to, to produce a – what must for mum have been a much more protracted and unpleasant experience than it would have been simply to lapse into unconsciousness and die that night. But the speed at which you are required to react, and the kind of – the fact you’re suddenly presented with these extreme situations is, I think is – would have made it very difficult to say, “Don't intervene.” but I think that, that would have been – you know, in hindsight that would have been the right decision to make, but it’s not one that we made, so (in the clip)

My dad certainly in his darker moments over the, did say that, you know, we’ve actually condemned her to a kind of living death, having not been brave enough to take the step. Which I think is, is, yeah, I think that’s a…that is the end result of the choice we made, but I think we would have to, you know, in all fairness recognise that we made the decision that we felt was right at the time. And you can't do anything other than that(no cut clip)

Because given the state in which mum was – which I suspect was, physically incapable of any, – physically incapable of expressing any response to the situation, but I don’t think that meant that she was not – that she wasn’t aware of the situation. I think she was very much aware of the situation and certainly though she didn’t have speech and she had, no movement as far as we could tell, apart from being able to move her head from side to side. She didn’t – she had a little, squeeze in one hand, but couldn’t move arms and legs, couldn’t, sit up or kind of move around in the bed at all, that she would have been – she was nonetheless kind of very aware of the situation I think. So that was how it went. And, in my own mind I’m not convinced I’m not sure how little speech and, interactive ability mum had. Because my feeling is that some of it was, a choice not to interact, or to appear to be asleep when visitors came at certain points. Because I would imagine that the situation itself was, you know, almost, almost unliveable.
So, yeah. It was kind of curious. I think it… – I don’t know how one would classify the level of consciousness that mum had, which I think was actually variable, and I think that some of that variability in terms of responsiveness was actually a choice to shut down from time to time because it was easier to do that than to kind of deal with the reality of the situation. But there were a couple of occasions I think – one time – I was trying to think one time when I went, –the – a couple of times when for example she responded to one of my children with a huge smile, but then was completely unresponsive when another of us kind of turned up into the room and so forth. So I have no idea whether those were kind of, you know, what one might say is moments of illumination in an otherwise kind of unresponsive state. But my instinct is that those were kind of chosen responses in some senses to a very, very difficult situation.

Decisions about what to do in such circumstances are always difficult. Rifat was one of only two people we interviewed whose relative was being treated outside the UK. Her father was in hospital in Bangladesh – her family wish they had not taken him to hospital when he became short of breath, as then he would have simply died when he had his cardiac arrest. They now face a series of difficult decisions.

Rifat feels there are now no good decisions, all come with guilt and regret.

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Is it something that we’ll have to do? Because these are all – it’s unbelievable that a person like my father had to suffer so much, and for what reason.

What would you have liked to have happened?

Just the way my father actually gone in the hospital. In a second, in front of my mum and in front of my sister. That was it. And I just don't know why did they revive – okay, they revived the heart, fine, but they knew that his brain is gone, why did they put him in a life support? Why? He went in his own way. And then everything boils down, my mum is like, “Why did we take him to the hospital? Why did we take him to that hospital?” So this why, why, why, why, is never ending. And why he needs to suffer like that, it’s just – everybody’s dad is special to them, but my dad was really special. Because he was very happy, he was very content, very happy, never had any regret over anything. So why should we have to regret on every little decision we are making at the moment?

Feeling responsible for difficult decisions about providing or withdrawing medical treatments was a major source of stress for family members.

Emma is very burdened by feeling she became the decision-maker in relation to her mother’s medical treatment.

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I – oh gosh. In terms of – yes, in terms of going through the; yes, you have to keep that person alive at all costs, you must, you must, you must, I would take that decision really, really carefully. I possibly wouldn’t make that decision. It might make me taper my thought into gosh, you know – but then [sighs] I’d want that person to die, I would not want to have to make that decision. But I – I think knowing what I know I would not want anybody to go through that particular process. I don’t – I wouldn’t want that actually. I wouldn’t want that. I don’t know what – how you would manifestly prevent that, but I – yeah, I would not want that, if it was absolutely known, I would not want that actually.

Because?

I think it’s, I just –it’s just not – I think – well, speaking selfishly, for the relative, it’s unpleasant. It’s just not nice. And I think, you know, would that person really want to be in this situation? No, no. I don’t think anybody would want to have that life force taken from them, you know, in that way. And I – you know, that’s a huge decision – statement, sorry, to make. But I couldn’t – you know, that you have no control, you have no thought, you have no cognitive reason at all in any way, you are there. And I suppose it’s been called in a vegetative state for a reason. And yeah, I would, I would not – personally I would not want to do that. I would – you know, and I’ve said to all my family, you know, push the button because I do not want to be in that state. And as a life force I just feel that – and I don’t know, you know, it’s putting that burden on – upon somebody. But – and it’s a burden. And, and, and the whole process is a burden which you never, ever let go. You can never – however – you know, ten years down the line you never, ever lose that burden. It is literally on your shoulder and you never, ever, ever lose it. You never – time is a great healer is a good old adage, it is. But you never lose that. You never lose that person in your mind because you always remember that person and that body wired, and that your rationale for making the decision, for whether it’s right or wrong, and you never – it’s a burden that you have to carry.

And it – you know, it’s not – you know, there are – people have a lot more difficult situations. But it is an entity in your life and it never goes. You don’t think about it daily, but it is – not daily but perhaps every other day, there’s something that you – I find that there’s something there that – you know, I don’t know what it is, a comment, a throwaway comment from somebody, a flash on the TV or something. Or, I don’t know. Or something absurd that you sort of – and you – oh gosh, crikey, and you never lose it. I don’t think you ever lose that burden. I think it’s a burden, it’s something you have and it’s a burden.

Cathy feels responsible for raising the issue of withdrawing her brother’s feeding tube. She believes it was the right decision, but starting the discussion left her feeling ‘like a murderer’

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I think it was really difficult for me. It’s really difficult to say that it’s what you want to happen. It’s really difficult to be the instigator because it sort of feels wrong, even though you know it’s right in this very unusual set of circumstances. It just feels so sort of socially wrong to want to bring someone’s life to an end. I felt like a murderer. I still a bit like a murderer sometimes [cries]. It’s one of the reasons why I hate telling people about it because I’m always really scared that the person I’m telling about it might be looking at me and thinking gosh, you know, you killed your brother [cries]. Did you have to kill him?

Because it’s – in that sense, it’s abhorrent, isn’t it? It’s – everything you’re brought up to believe is a good person says that you shouldn’t do this and yet you have to because this situation now exists. So really there needs to be some way of coping with it so that – so that people don’t have to feel like murders because I don’t think people should have to feel like a murderer, should they? [Cries].

Although family members are the decision-makers in many parts of the world (including Bangladesh and the USA) this is not the case in the UK where, in fact, even the named ‘next of kin’ cannot consent to or refuse treatment on behalf of another adult (although it is possible to officially appoint someone with appropriate Power of Attorney or deputyship with such rights/responsibilities). In the UK it is the responsibility of the treating clinician to ensure any decisions they take about a patient is in the patient's best interests (unless the patient can consent/refuse for themselves or has an Advance Decision). Consulting appropriate family/friends is key to making a best interests decision. It is the duty of clinicians to consider the benefits and harms of every treatment, including the ‘feeding tube’ for the individual patient (depending on their likely wishes). Family/fiends must be consulted but – it should not be left up to family members to initiate such discussion.

Those we spoke to were sometimes shocked and outraged to discover that, in law in the UK, they were not empowered to give or refuse consent for their relative's treatment, but they could also feel relieved.

Nik feels guilty that her father continues to be kept alive. She wonders ‘is this my fault’ and was interested to learn that it was not her responsibility to make such decisions.

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Nik feels guilty that her father continues to be kept alive. She wonders ‘is this my fault’ and was interested to learn that it was not her responsibility to make such decisions.

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Yeah, the main thing that – there was the – well the biggest thing that's – that was on my mind about this whole thing – has been on my mind about this whole thing since it's happened has been the feeding, the stopping the feeds or not, to continue them or to stop them because that's the only option that you're given to let them die. But obviously I was under the complete wrong impression about that anyway.

In that you—?

- In that the decision isn't really mine anyway, so – so that's – that's new to me [laughs].

But does that mean it's been playing on your mind for a long time, that you thought it was your decision?

Yeah, because it's – yes, yeah, because you – even though it's not for me, I wouldn't – I wouldn't do it, but still it does cross your mind because it's your only way out, you know, that you've – that they don't want to be like that and they didn't want to be like that. And if they said to you before that if they were like that, but to let them go. They didn't specify how, but yeah, so it does – it does cross your mind a lot, even though it's – you can't do it. You do think sometimes, "Oh, should I just do it then?" or, you know, can't help but think it. Can't help it.

Yeah. And it's – how often has that option been discussed with you?

Only the once, I think, and then when I went to speak to the manager, I think it was a year or two ago about it again, we discussed it then briefly. But no, not –you know, it hasn't been something that's been put on me a lot.

But it does mean that as far as the clinical team are concerned, there's been a conversation. They don't know that you might dream about it or think about it?

Yeah, no, no.

And I think that's another message that's worth – I think clinician's don't understand what this puts families through, and that's one of the things that families often say. "Should I? Shouldn't I? Oh my god, am I – am I keeping him alive like this?"

Yes. Yeah, exactly. Is this my fault? Could this have been solved years ago if I'd have just done it? You do. You do think those things. You do. And they – that – those aren't ever going to go away. …What – what to do? What can you do? Nothing.

To learn more about clinicians’ responsibilities for decision making see ‘Decision –making: the legal situation and clinical practice’.

Last reviewed December 2017.
Last updated December 2017.