Family Experiences of Vegetative and Minimally Conscious States
Family experiences of decision-making
The law about the role of the family in decisions, and how to act in a patient’s ‘best interests’ is clear (see ‘Decision-making: the legal situation and clinical practice ’), but there was a widespread misconception among many of those we talked to that ‘next of kin’ were responsible for consenting, or refusing, treatment. In addition, although people had often come across ‘Goal setting meeting’ or ‘Discharge meetings’ they sometimes had not been invited to anything called a ‘Best Interests’ meeting and it was rare to have discussions with healthcare professionals where it was clear that ‘best interests’ and considering what the person would have wanted were the main focus of the discussion.
Some families thus experienced a lack of opportunity to represent their relative’s own wishes in relation to serious medical treatment. They had very little communication with treating clinicians at all – or meetings which did happen were simply focused on practicalities of delivering care and going through the system (e.g. move from hospital to care home).
David and Olivia say the ‘best interests’ of David’s mother was not discussed. Meetings simply focused on delivering care, rather than reflecting on the purpose of interventions and what the patient herself would have wanted.
So that was after about six months?
And what was that meeting about?
Olivia: I think they were just trying to establish the level of care that she would need, what equipment she’d need to leave the hospital with, her oxygen and those kinds of things. It was more I suppose practical things.
So it wasn’t – it wouldn’t have been at that stage a question about what is in [Name of patient] best interest as a person, should she continue to receive treatment, should it be withdrawn?
David: No, no, that was never – never came up.
Olivia: Had she been on another ward that was maybe more specialised, where we didn’t have to become so involved in her care so to speak, then maybe we’d have been concentrating more on the fact that she hadn’t recovered, that she wasn’t recovering, that she wasn’t going to recover. But because of the ward that she was on—
Olivia: actually the longer term issues—
Olivia: it was a day-by-day battle.
David: Our minds weren’t on anything in the future, it was every day, every hour, is she all right, is she clean, is she being cared for, who’s going next?
David: So – but maybe with more information and better care at that point, maybe, you know, you would have—
Olivia: Because we had—
David: looked at the world differently.
Olivia: Yeah. Because we have looked back at that time, those six months in hospital and thought, they knew at that time, it’s more than six months after she’s had the stroke, that she’s not going to recover. Hasn’t got much chance of recovery, why did nobody ever mention when she had pneumonia, “Do you want us to treat her?” Or that not treating her was even an option. We thought that after it had happened but at the time I suppose there was so much going on.
David: It almost, almost felt like the job’s gone wrong, what do we do now? How do we get these off our back? That’s what it felt like, when we were having the meeting, where can we put her? And that’s what it felt – you know, it felt like that. Either through obviously being upset and being angry at the care that hadn’t been administered. So yeah, there was a lot flying around at that time. But that’s what it felt like, they were just; get her out of hospital, let’s wipe our hands of her.
David: You know, that’s probably one thing throughout the whole five years was lack of communication. Second guessing at the future, at the state of mum, where she was going, when she was going. So yeah, to have some information early on, some definite set in stone, this is where we’re at, you know, and that would help – I think help you sort of forecast the future a little bit maybe, you know, for best interests for, you know, for all really, yeah, definitely. Definitely, yeah. I think we would have been ready for that, definitely.
Olivia: To know it was an option, even if we were to choose that option in the future, you know, we were years down the line, not even knowing that it was a possibility.
Kevin and Miggy wish they’d had regular opportunities to be given more information and to discuss their son’s prognosis.
Kevin: Yeah, they weren’t – I didn’t think —
Miggy: I think sometimes you see – you’re reading these things in a report, and obviously the report – we had, we had doctors doing reports for our compensation claim, then we had doctors doing reports for our court case, and you often get your information from the report. Like, “He isn’t going to get any better and his life expectancy is so-and-so.” And that’s the first time you get that piece of information when you’re writing a report that’s been done for a compensation claim. But I don’t recall having that conversation with a doctor, just sitting around a table.
So you’re just faced with it in writing on a piece of paper?
Miggy: And, and that it’s been done for another purpose. That the reason for that report in the first place is because you’re making a compensation claim, or because you’re applying to the court.
Miggy: That it’s almost accidental that you’ve received that piece of information. I—
Miggy: I think you sho, I think you should have more information, like more of a chance to sit around with people. You know like people have – I know when I had breast cancer a while ago, they said, “Well, we have an interdisciplinary meeting every Wednesday afternoon to discuss the cases, and this is when the decisions will be made.” I’d quite liked to have been in a meeting, an interdisciplinary meeting, along certain stages of Matthew’s care. I realise that’s sort of costly and time-consuming as well. I probably would rather they spent the money on physiotherapy to try and make him better than having me in a meeting room. But I think that something like that would’ve been helpful, to know more from professional people. Not just from nice nurses trying to chivvy you along, but actually some solid information that would help you make better decisions.
So, comparing it to the kind of information you were given with breast cancer, where you had consultations, presumably, about—
Miggy: Yeah, what they were going to do, what— Yeah, noth, we never had anything like that. We never really had a, we never sort of quite knew where we were going and it was always down to us to decide where we went with it.
If families thought the patient would want treatment – they were often felt they had been able to insist upon this (at least once the patient left intensive care).
If families thought the patient might not have wanted treatment - then this was more complicated.
Even contemplating the idea, let alone raising the issue, that a patient might prefer to be allowed to die could be extremely difficult. Some of those who spoke to us were clear they could not represent the person’s views in this case. One mother of a son in a permanent vegetative state explained: ‘I would never agree to that [withholding of treatment]… no I could never give up on him. …Maybe that’s wrong or maybe it’s right, I don’t know, it’s just who I am’. She adds that even though her other son has expressed strong wishes to refuse life-prolonging treatment if he were ever in a similar state to his brother, she would not feel able to respect his wishes – ‘No, I wouldn’t give up on any of my children. I can’t think any other way’. Another mother, Helen, says that ‘for so long the only thing that enabled me to cope was telling myself that, all right, he was injured but he was still alive, he was still there.’ She gained comfort from being able to ‘hold my warm, living boy in my arms.’ It took time before she could face the question of what was in his best interests: ‘things changed, the day I had to ask myself if the maternal comfort I was getting from that was worth the price that my son was having to pay to provide it for me’. Cathy similarly spent years caring for her brother in a vegetative state – and found it hard to consider any other option apart from continuing to hope for his recovery.
Cathy wished the clinicians had called a best interests meeting instead of having to be the one to start conversation about treatment withdrawal.
It sounds like it was both the instigation being left as a burden your shoulders, but also this sworn affidavit, the formal process of that. Can you say a bit more about that?
Yes because I definitely can. I don’t almost know quite – I don’t quite know why I find it so distressing but I find it really distressing that I had to sit down and write this thing that I wanted my brother to die. I just find that – in a way, that I feel that if somebody could have come and, you know, said to me, “Oh we’re having a best interest discussion about your brother,” you know, then asked me questions and I could have answered them. I just don’t think I would find that distressing.
If clinicians had asked Emma "What would Kate want" she feels different decisions might have been possible, and it would have relieved her of responsibility.
Because really as much as you are thinking about – what you think is – you know, putting that – turning that around and saying, “what would this person have wanted?” I think probably would have an impact on your thought. Because I think your knee jerk reaction is to preserve life, you know, what if, what if, what if. Certainly for me that was how I felt. Perhaps if someone had said, “What would Kate have felt? Would she want...” you know, I would have, I would have drawn a breath I think. My knee jerk would not have been so reactive. I think I would have thought, “oh, gosh, no, she wouldn’t. She wouldn’t.” And yeah, that might have had a much more directed approach actually.
It might have allowed for non-sustaining life?
Yes, I think it’s possible, yeah.
Jim was relieved he did not need to make decisions – because his wife died and then there was ‘nothing I could do…only carry out her wishes as far as her funeral’
No, I didn’t – I'll be quite frank, when I was told Amber had passed away, it was a great relief. Although I had hope that Amber would survive, it was a great relief when I was told Amber had passed away. If you like, it had made a decision, Amber had passed away, there was nothing I could do, only carry out her wishes as far as her funeral and what she wanted to happen, etcetera. Whereas before, I would be making a lot of decisions in conjunction with the medical team or whoever.
It's a big responsibility.
Yes. But that changed when Amber passed away. And it was – I've got to admit, it was a relief. Although I had to sit down and think about it, I've got to admit, it was a relief off my shoulders. Probably because I didn’t have to make the decision.
However, family members also expressed ambivalence – and concern that clinicians might over-rule families. The question of withdrawing ‘the feeding tube’ was particularly difficult.
Cathy expresses doubt about the power of doctors and courts to make ‘best interests’ decisions.
But then I also see, I suppose what I think is… I think the family will be ready. So I do maybe think in that, I do maybe think that the best holistic approach in that situation might be to give, if you look at that family as a group and give that situation another six months, by which time it wouldn't have to be – I suppose I mean it just does seem like an awful mess, doesn't it? And I'd hate to think of someone, I suppose I'm thinking of what it was like to be, to experience withdrawal and to think about how that would be if it, if that also hadn't been what I wanted to happen, I think I might just actually have gone mad, or actually gone and, I mean it seems to me it's got disaster written all over it. I think if somebody had tried to do that to Matthew before we wanted them to do it, I'm not sure we wouldn't have gone down the house or something, or I'm not sure that we would have accepted, I think like the level of anger I might have felt at that stage.
So that's why I feel really wary about almost like a too, a process that didn't, but I think if there'd been more avail, more things available, I don't think it would have taken me or my family that degree of time to reach the decision that we reached, which I feel we reached as a kind of like as a war of attrition. There was no, I feel we had to reach every single little bit of decision by ourselves, and feel bad for doing it and feel betraying and neglectful for doing it.
Mark was clear that it was doctors making the decision, not him – which was a relief – especially as he did not know his brother very well.
So I found some of those discussions quite difficult. Because you’re being asked an opinion as to how he would feel in the position he was in, what would he want, and what kind of person was he, what sort of lifestyle did he lead if – They’d already decided at that stage he was unlikely to be able to walk again if, if in fact he did recover. And this was a day or two into the thing really. And how would he have felt about that. And I had a view then – still do – that, you know, he was a computer engineer, software kind of support engineer and he did a variety of odd – you know, just chopped and changed through his life quite a lot, but was somebody who thought a lot, spent a lot of time reading, and I was saying then that, you know, if he could still do that, he could still get on the internet and, you know, research things and then that would still be a reasonable lifestyle for him, if that was feasible. So after some discussion – and they obviously had their own debate about that as well I think, and they decided to do the second craniotomy, which after a few days did do the job. Eventually, the pressure died down in his head. He’d got quite a level of damage to his brain. And that’s one of those things when you look back, I actually don’t know to this day quite how much, physically. And I don’t know whether that really makes any difference. But it’s one of those things that at the time you’re kind of told an awful lot in a short space of time, it’s a whole situation that you don’t understand, you don’t, you don’t – I’ve never had any dealings with anybody in that sort of situation before. You feel like people are asking you what should they do next. And they’re not really. When you look back on, you know, they are – they’re making best interest decisions for him which is what they’re required to do and that’s fine. But they’re also sounding me out about some elements of that. But of course you’re worried stiff that you’re making a – you’re being asked to make a decision about should he die, should he not, should he – should they do something, should they not, based on – You know, I would feel reticent about that with somebody that I really, really knew well, but more so about somebody that, that you don’t know as well as perhaps people expect you to. You know, they expect because we’re brothers that I would understand absolutely every facet of his life and there were huge chunks of his life that I knew absolutely nothing about.
At the point when Mark was asked to contribute to decisions about his brother, he had no sense of the extent of his brain injury, and is not sure whether the doctors did either. But he is clear he was being asked about what his brother valued in life – no
When you were saying, you know, they said he might not walk again, did they also say, “And he might not be able to recognise his family and he might not be able to speak—
Mark: No, no, no.
And he might not be...”
Mark: At the time of – the first – those early discussions, it was his mobility that they were fairly certain would be nonexistent. They weren’t absolutely certain. And that was the thing I…
Mark: You know, as a layman you think, how do we know so little about, you know, we know – we can put a man on the moon. We can do this, we can do that and the other, and I was surprised at how little we knew about the human brain.
Helen: You kind of think the brain has been mapped– I’ve seen diagrams with this is the – the frontal lobe is responsible for language and you think the whole thing is like that. But apparently – well, they didn’t think—
Mark: It’s not as straightforward as that
Helen: They weren’t willing to say, “The bits we’ve removed have – probably were in charge of...” language or speech or anything. They just – they wouldn’t – they weren’t prepared to say, they couldn’t say. So we didn’t really know what we were weighing up, to some degree, did we?
Mark: No, no. The kind of impression we got, we were weighing up whether he – it sounds bizarre now - whether he would be satisfied with a lifestyle that would mean that he would be in a wheelchair and wouldn’t be able to kind of move himself around himself. And at the end of the day, my view was, well, that was better than nothing. He was the kind of – he wasn’t a sportsman, he wasn’t a long distance runner or somebody that would seriously miss that in the same sense that somebody that – like that would.
Mark is clear about the legal position
Mark: Yeah. Doctors leave you thinking that sometimes I think. And I wonder why sometimes. Because you do get the impression you’re being asked for a decision. And really what they’re asking you is what your opinion is, and that’s fair enough.
Helen: You’re being asked to – maybe to influence their decision, it’s how you feel, isn’t it?
Mark: Yeah, yeah. And that’s fine. That’s okay, as far as I’m concerned. What’s not been tested is if they then come to a decision that I disagree – well, it has been kind of tested. You know, they made a decision at the hospital at Christmas to withdraw all treatment and not do anything further. And I had a bit of a dousy with the doctor. But as luck would have it a different doctor by then had reached a different decision and decided – so I still don’t really know whether that was just – that would have happened anyway. One would hope that it would, or was it just because I was standing there saying, “Hang on a minute, you’ve got this wrong,” you know, and what happens if I’m not there. Can I trust the system to have actually realised that they’re looking at the wrong scan - and they’ve made – they’ve decided he’s gone non responsive since he’s been there as opposed to been non responsive for two years, you know. And I don’t, I don’t know. So you don't take a chance on that, I don’t take a chance on that. Because I wouldn’t want to be – because then I would feel responsible if something went wrong. If I’m there and it still goes wrong, then I’m responsible to some degree, but I’ve also got the opportunity to do something about it. If I don’t show up then I am to some extent responsible for what comes out of that equation in – up here. Because I’ve elected just to let somebody else get on with it. Who then may have wanted to have an opinion, and not got it.
Yeah. I was just thinking, did someone explain to you at some point that the doctors make the decisions, not you?
Mark: No, not really.
How did, how did you know that?
Mark: Just listening to the way they talk.
Mark: Yeah, yeah. And also, and also… I’ve kind of looked into – because a couple of times I’ve thought, well, I’ve agreed with this and I’ve agreed with that and it’s all kind of – I wouldn’t say hunky dory but it’s okay. But I have considered what would happen if I wanted – if I personally wanted a different outcome for [my brother], right, and in fact, legally there’s absolutely no way that I could enforce that at all. Because I am not his legal representative anyway, I am his closest relative but that stands for diddly in a legal sense, unless we’d made some prior arrangement where he signed some authority over, like Power of Attorney or something, in fact, it’s not a Power of Attorney when it comes to health, but anyway, where he’s previously agreed and I can produce something that he’s written and signed saying, should this happen I want this to happen. And of course, life’s not like that, is it, it doesn’t – few people do that, some people probably do it.
Mark is regularly consulted in best interests decisions about his brother – he is worried about this responsibility falling on his wife.
Now, I can't really understand why. Because if he can have antibiotics any other way, it just amazes me that they can't send somebody, even if they can't license the staff there to do it – they give him all sorts of other things intravenously, he has syringe drivers that they deal with and all sorts of things, so he’s –it’s nearest to a hospital to me as anything. But anyway, technically it gets to a certain stage and then there’s debate about whether he goes to hospital. And then of course you get all the kind of best interest decisions rolled out from other doctors who have seen him and other consultants.
There was a neurosurgeon in [hospital] who’s – who fitted a shunt a couple of years back, because his head started to swell up again and because it wasn’t draining proper, who’d said really it wasn’t in his interest to do any further major operations on him. And I concur with that. I can see if we’re talking about a major op, you know, that’s a risky thing. Anything that’s going to damage him further is not the right thing to do to me, but you have that debate if it’s replacing his stomach rig. Now that’s a life critical piece of equipment for him. And yes, it is an op, technically, of course it is, and he has to go to hospital for it, fine. But it does gall me that you have to have the same debate about – we had it before they put the rig in. And then there’s a problem with it and it needs changing. And so you have to have the debate again. Well, in fact, intrinsically nothing has changed. He’s not deteriorated—
Helen: Time’s passed.
Mark: Time’s passed. He’s not deteriorated, he’s not got any better in a general sense. And then he goes in for the rig operation and then you’ve got doctors asking you about his head injuries again and whether – you know, and then they score him on some index system that says, well, he’s in a critical condition because he’s non responsive. Well, he’s – non responsive is normal for him most of the time.
Helen: That’s bottom line, isn’t it? [Laughs].
Mark: And so – and every time there’s, there’s an issue like that, I will phone up or the hospice will phone up, in the middle of the night, and we’ll have a discussion about it, whatever it is, because they, they I suppose need to be comfortable and I’m comfortable with what they’re going to do next. Their doctor sometimes is saying they can only do this in hospital so if we are – the decision is do we do it or do we not, because if we do it he goes to hospital and that’s that. The other one is we can, we can wait a bit longer, they can treat him with something that they can do at the hospice, see how that goes. But that in itself is risky and am I happy with that sort of thing. And you sometimes – depending on his circumstances and how he is, you – now I’m okay with that but I don’t think it’s right that, that that should fall to Helen in my absence. Or anybody else, like my uncle who’s nine – eighty-eight, ninety, whatever, in my absence or something else.
Last reviewed December 2017.
Last updated December 2017.