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Mark and Helen

Brief Outline: On 10th March 2011 Mark’s brother was hit by a car while cycling. Three years later, Mark and Helen have not yet been given a definitive diagnosis or prognosis but are hopeful that he may still recover sufficiently to a life that he would consider worth living. Mark is not sure whether or not, or to what extent, his brother is aware of himself or his surroundings, or whether he will ever become so, but in the meantime he is trying to ensure that his brother gets the best possible medical care.
Background: Mark (aged 56) and Helen (aged 54) are a married couple. Mark is an arts centre manager and Helen works in retail.

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Mark’s brother was knocked off his bike by a car about 3 years ago. Mark reports that his brother had two craniotomies and part of his brain was removed, and he had a cardiac arrest after the second craniotomy and was resuscitated. He remains with a tracheotomy in place and dependent on ANH (artificial nutrition and hydration), and oxygen supplementation at night. His level of consciousness, if any, is unclear. At the early stage there was some discussion about whether or not ongoing treatment was appropriate. Different opinions were expressed: “You can talk to one consultant and come out quite hopeless, but then talk to another consultant who is hopeful”. Mark and his brother were not very close and he does not know what his brother would want in this situation, so Mark quite reserved about his input into decision-making: ‘If I knew what his views were, that would be different”. He believes that his brother may recover enough consciousness to make his life worth living.

Mark was relieved to discover that it was the clinician’s responsibility to decide what was in her brother’s best interests and not his role as a brother. He says that the best interests meetings have been very good – although “you almost feel they are asking you whether they should do something to keep him alive or not. But really what they are trying to do is formulate an opinion and some are very stark about what they say”. Mark’s brother has had recurrent infections which is making accurate diagnosis difficult – but he is receiving excellent care and the family have a case worker which makes dealing with financial and legal arrangements and organising things about his care easier. Mark and Helen are surprised by how long things have gone on: “three years later we are still here”. They are also surprised by how little seems to be known about brain injury: ‘We can put a man on the moon – but we know so little about the human brain.’ Hospitalisations are difficult and the system does not seem to be able to cope with his brother’s need and his brother often returns to his long term care placement with problems such as bed sores. Mark feels his brother could have easily died but “while he’s prepared to fight to live I need to fight on his behalf”. His brother does not appear to be in any pain or distress so this is a reasonable “holding position”. The long-term care home is providing dedicated care, and contact Mark when there are infections or when the feeding tube falls out to discuss best interests – and Mark is in favour of basic maintenance continuing at this point. He might agree with the withdrawal of treatment in the future, but feels it is too early to consider it at this point in time. One thing he is very clear about is that he does not want his brother to die alone. He hoped, and still hopes, there may be some quality of life in the future, however limited, but he finds supporting his brother very time consuming and now worries about his brother outliving him and the burden this will leave his wife. He and Helen have not talked a great deal about the effect of the situation on themselves, and were glad to have the opportunity to reflect on what had happened over the last three years.

Mark’s brother, Paul, died suddenly but peacefully on 30th June 2014 after two an a half years in hospice care.
 

Mark’s brother has still not received a formal diagnosis, three years after he was hit by a car while cycling. They are not sure whether he is ‘vegetative’ or minimally conscious’ and, watching him, they wonder if he experiences emotions.

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Mark: He has a smile on his face at times, which seems fairly random. He cries sometimes, which is quite distressing. One of your daughters had a bad time with that once, didn’t they? And that seems to be spontaneous and then - . Oh, it’s one of – like a lot of things with him, he – I can be – I can persuade myself one way or the other about some of these things and so can the medical people. And when it happened in hospital they used to say, “It’s just his eyes watering and you don’t want to take any notice of that really.” But when you’re looking at somebody and they’re looking straight in your eyes and they start crying, you can't not take any notice of that, I don’t care what anybody says really. And if that coincides with something that you’re talking about, that you suddenly think, well, actually he might find that a bit distressing, it does make you think a bit more.
 

Mark received a phone call telling him his brother had been knocked off his bicycle by a car.

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Mark: What happened? Well, 10th of March 2011 and I had a phone call at work, I work up at – on the North West – from the police to say that, my brother had been involved – well, that somebody had been involved in a road traffic accident and my phone number was in his mobile phone. He’d got no identification on him or anything; he was just out on a bicycle. He was very badly ill; they were taking him by air ambulance to a central London hospital, and, did I know him, would I – was I likely to know him, from the phone number, because they used his phone to phone me. So I said, “Yeah, it’s my brother.” And he said, “Well, you need to get down to see him as – well, you need to get to see him as soon as you can, because he’s very, very, very ill.” I then said, “Well, I’m up on [location]” and the accident was in [place name], and he was heading for as I say a hospital in the City, in actual fact. And so I said, “Well, it will take me five, six hours maybe this time of night to...” it was right at the rush hour, five o’clock [laughs]. So I rung, my partner then who’s my wife now, and said, “I need to go down.” She put some things in a bag when I came back from work to pick the car up because I wasn’t, – didn’t have the car with me. And she decided to come with me, which I’m very grateful for with hindsight. Because I thought we’d be there a couple of days probably, and then we’d be deciding what to do next, and he might have to come back and recuperate and all – kind of the enormity of the thing really – because we had not seen him and that was all we knew at that point, hadn’t really kind of—

Helen: Yeah, I packed a bag including his funeral suit. Because that’s what we thought was going to happen.

Mark: Yeah. For the police had said he—

Helen: It was a possibility.

Mark: He’s not in a good state at all and not – didn’t think he was likely to survive to be honest. And so we drove down, got to the hospital at about one o’clock in the morning, I suppose?

Helen: Late, yeah. Dreadful weather.

Mark: And they were waiting to see us. 
And they explained that they’d already had to do an operation on [Name] head, take one side of his skull out, to relieve the pressure.  , but he was still in quite a bad way. He’d broken a lot of bones, and had – and… was in intensive care.  Explained a bit about it that it was, it was a life threatening thing, that he was alive at that time but they weren’t sure he would make it through the night really, were they?

Helen: No.

Mark: and then took us in to see him. And… he – well, he was just lying there with one side of his head missing really. I’m glad they did it, they did explain that first.

Helen: They did warn us, prepare us for that. But it was still quite shocking.

Mark: Yeah, but it was a shock. So we went in to see him and I couldn’t believe somebody could survive what he had – had happened to him.  
 

At no point in intensive care did Mark and Helen imagine that Mark’s brother would still be in a coma-like state three years later.

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Helen: I look back on that time and think, at no point during those discussions – because I took a slightly back seat because, you know, he’s my brother-in-law, so Mark is the one who has got to decide - but at no point did anyone say that this kind of three year period was what we might be facing. He was in a coma but the expectation was that that would end. And then we would know where we were somehow. I do remember looking in the relatives’ room, and there was, sort of thank you cards and photographs. And photographs of a young man, obviously in intensive care in a sort of coma state, and then photographs of him returning in a wheelchair all smiles and that - . Somehow I thought that was the next step.

Mark: That’s where I thought we were going.

Helen: [My brother-in-law] would wake up if we spent every day by his bed, “Come on, [name], open your eyes.” But, you know, “Open them up, look at us, talk...”. But in fact, the fact that three years – sometimes he opens his eyes and sometimes he doesn’t, I don’t think that ever entered my head that this was a kind of outcome really. 
 

Mark and Helen were shocked by the look of the craniectomy– but three years on they are now used to it. His brother remains unresponsive but looks like he is ‘resting’ and they still think he might recover.

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Helen: No, I – seeing [brother-in-law] is not shocking because, the first – the biggest shock I had, when he’d finished with the operation and he was sort of just recovering, was when his, brain swelling went down. And that was an almighty sort of – I kind of – yes, I knew they’d taken part of the skull away, but it hadn’t occurred to me quite what that would do to his head shape. And that I think is – was a big shock. But that was two, three years ago. So now I’ve got used to that one. So when I go and see him, he does generally look quite peaceful, quite happy. How can he look happy? But he doesn’t look to be in distress. He doesn’t look traumatised, he doesn’t look like he’s struggling. And I think it – that lack of apparent struggle that makes you think he is okay where and how he is right now. If he did show signs of—

Mark: It’s kind of like he’s waiting for something. He isn’t. But he’s…

Helen: He looks as if – it wouldn’t totally surprise me that he is just completely resting and he is going to make a complete – almost hundred percent recovery. Because he looks – apart from the head he looks undamaged, he looks – there are no – it was worse when he had wires and tubes and bits of equipment bleeping. All of that’s gone, even the oxygen has gone.
 

They still hope the craniotomy might have been the right decision.

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Looking back at that decision, do you think it was the right decision?

Mark: I still don’t know. And the reason I don’t know is because the one thing, the one thing I dearly would like to know - and they’re talking about running some assessments now to find out, but, I mean, we’re three years down the way now - is I can't tell reliably how aware my brother is of what’s going on around him and what’s, you know, life around him is like, and what life for him is like. So I still don’t know whether that was the right thing to do or not. Because if he is aware – and something in him is fighting back, he gets illnesses and he gets chest infections and he’s, you know, he spent all of Christmas in hospital because of a stomach problem with his feeding rig, PEG - but something in him is fighting back every time, I think. Because I think if he was, if an individual was minded to give it up and forget it, then…

Helen: He had every opportunity to, yeah.

Mark: He had every opportunity several times to do that. So while he’s prepared to fight, I think I need to fight on his behalf I suppose. And until somebody can prove that he doesn’t respond and he doesn’t know what the hell is going on around him, it’s not for me to say that, that, nobody should do anything more really. So I still think it was the right thing to do now. I do wake up at night sometimes thinking by agreeing to that I’ve been party to him having three years of what could be an absolute nightmare existence for him. But if there’s a road, an improvement road there, however small it is – and I think at times he does respond. So I do think there is something there that could be built on in time to get some sort of communication going. And I still think that’s better than nothing which is, which is where we’d have been otherwise. So, so I don’t know, what do you – it’s easy for me to say. 
 

Clinicians were clear about their own difference of opinion and Mark reflects on the uncertainty surrounding the value of a second operation.

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Mark: So it must be very difficult for somebody in a position of the consultants and surgeons to decide whether - I mean, it’s not deciding if something is worth doing or not, is it, it’s whether there’s a benefit for that individual to do it or not. And I can appreciate that and – whereas it feels – I hated that whole, you know, you just come out of there thinking – you almost feel like you’re asking – they’re asking you whether he should – whether they should do something to keep him alive or not really. And, and it’s not as cut and dried as that, when you look back on it. It wasn’t, but it just feels like that at the time. And really what they’re trying to do is formulate an opinion. And some are very stark about what they say and some are quite sensitive about what they say and how they say it. So you can have one of those conversations with one or two consultants and come out of it with a fairly hopeless kind of perspective on the whole situation. And then four hours later you can have another conversation with another consultant along similar lines who is actually quite positive and relatively hopeful about some reasonable result from it. I think that’s fair to say, isn’t it?

Helen: Yeah.

Mark: We did have some pretty horrible discussions but – at that point. But then we also had some whereas I say they were quite positive about the situation. Which meant overall you still couldn’t really decide what was for the best. You decide, don’t you, on what you know at the time. And what we knew at the time was that he probably wouldn’t be able to walk again. But he possibly could use a computer, talk, think, properly. And that for me would be a reasonable result, given where he was - or the position he was in. So I was in favour that they did carry on with it. And as I say, ultimately he did. I don’t, I don’t know to this day how thin a line he was on, you know, if, if – or how, you know, at what point they decided – or what it was that made them decide to do that. We had one discussion, really middle of the night, with one particular surgeon, didn’t we? Who came – asked to see us, we were in intensive care with him. And he was a really nice fellow. And he said, “Look, we are undecided about this to be honest. Because we could do more damage than there is already. You might not think that, but it’s possible, you know. And it could have a catastrophic result for him.” I said, “Well, if we do nothing it’s a catastrophic result anyway from his perspective, isn’t there.” And he said, “Yeah, there’s no avoiding that really.” So, – it was a strange conversation because he wasn’t really asking me – he asked about what [my brother] did, how he was and what kind of things he was interested in. What I felt would be a reasonable quality of life for him in the future, and then didn’t really say much beyond that, went away, and then next thing we heard they’d decided to go ahead and do that, and they did do the second craniectomy. 
 
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Mark was perturbed by the suggestion that he might be expected to care for his brother.

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They’re kind of – they’re very good – the crisis bit at the beginning, patching him up, getting his bones fixed and all of that, was absolutely – wouldn’t fault. But then you get to the point where he has to be discharged. And, you know, we were having a conversation at the hospital where they were saying, “Right, well, we need – we’re going to – we need to send somebody round to your house to assess whether, you know, what modifications we can make to your house to send him home.” And I’m thinking, what? And they know what – they’ve got his – are you serious? And then you start sounding like an uncaring relative, don’t you? You’re, you’re saying, “Are you seriously expecting me to take him back home?” Well, well, you know, people, people do, people do. I’m thinking, yeah, but that—

Most people don’t. 

You can have people coming in and, you know, somebody living in, a carer living in and all that. And I’m thinking, well, hang on a minute, that isn’t the best thing for him, is it? I don’t think, I don’t think he’d want me doing what they have to do. I don’t think he would want them doing it, but he certainly doesn’t want someone like me or Helen doing it.
 

Mark believes his brother usually goes downhill whenever he goes back into hospital.

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Mark: It’s quite a marked difference though when he goes into the hospital for something or other, and he just goes downhill because they just don’t know him as an individual. They don’t know, they don’t tend to even read his notes. So they’re asking questions and then get exasperated because he doesn’t answer them. Or they’ll give him a diagnosis, because I had popped out to get a cup of coffee, and the doctor will come in and say ludicrous things like, “I’ve explained to [Patients Name] what’s happening and he’ll let you know,” and go out of the room! And you’re thinking, “hang on a minute, you know, it doesn’t work like that with him.” And again, you know, they’re very, very busy. It’s easy to say that’s wrong, but we are talking to the hospice about putting a pack together to send with him when he goes to hospital, that’s kind of got a one sheet thing about, you know, he won't answer you, he can't necessarily understand what’s going on, but we do think he’s aware to some extent, and his medication needs to be – you know, they took him off some of his medication while he was there last time round. And—

Helen: Still don’t know why.

Mark: The hospice – we still don’t – no, well, the hospice are trying to find out from the hospital as to why, and they’ve found the doctor that’s changed his meds but they don’t know why it was. So they’ve put him back on some of it because he became quite ill after he came back because some of this stuff wasn’t being administered anymore. And it’s a whole kind of messy kind of change from the kind of community care side of things to the – well, it’s all NHS, isn’t it, but to the hospital side of things. 

Mark: They were asking me about his medication. And I was saying, “Look, phone the hospice, you’ve got the contact numbers, if you’re not sure about...” “But we’ve never seen this stuff before, you know, and he needs a different type of nebulizer and we haven't got the stuff to do that.”

[Laughs]

Mark: And then, then can you pop to the hospice because we haven't got the right size inner for his tracheotomy tubes, he’s got a different size to what we have here. 

[Laughs]

Mark: Okay, right. And then they found a box somewhere that somebody had left behind from something else but that’s only going to last two days so what are we going to do then? And this is all with me, right.

Helen: And then would he show the nurses how to do it [laughs].

Mark: And then was our – could I put these – they’d got all these bits of tube and filters and things for his neb – this, antibiotic nebulizer thing that he has, which is I gather a bit unusual but he does have, and they said, “Well, do you know how it fits together?” And I said, “Well, I think I do, but I wouldn’t – you’ve got to talk to somebody. If I get that filter in the wrong place maybe he doesn’t get any benefit from it at all.” “And why’s the tube going out the window?” I said, “I think it’s just so that you don’t breathe the antibiotics, but I don’t know, right, talk to the hospice.” So – and then they move him to a different ward and you go through the same all over again. So you end you don’t dare leave him.
 

Mark describes some of the challenges of episodes of hospitalisation.

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Mark: Because he goes to hospital and they have this, you know, slight – well, as a layman, a slightly inane principle that they can't accept anything that he arrives with as being medically fit, sound or reasonable to use. So they pull all his drivers out and they pull all the – and fit their own. And then have a debate about what was in the thing in the first place, so, so that then – you know, so they decide to give that through some different method. And that’s where it goes wrong I think. Because they won't – I don’t understand the kind of workings of the health service particularly, but there seems to be like this view that the community care bit – which is where the hospice sits in –whatever they do is fine but it’s not good enough for a hospital, or it’s not right for a hospital. So a hospital do something different. 

And then when he goes back then that isn’t right for the community care thing, so they have to change it back again. And that has to provide a level of angst and upheaval for him, whichever way he’s going really, and there’s this kind of air that, you know, the hospice expect him to be in a state when he comes back from hospital, whatever it was he went in for, which they expect to have to spend a lot of time and effort to kind of retrench if you like, or get him back on an even keel. 

Yeah.

Mark: And then he goes into hospital and they don’t understand what on earth the hospice are doing kind of approach. So it feels like… Nobody actually says that but it’s kind of feels that way. Or they’ll decide that something the hospice is doing isn’t necessary and not relevant so they stop it. But they don’t seem to do that in discussion with the hospice which would make sense to me, just a different doctor seems him one day and says, “Oh, he doesn’t need that anymore,” dump, and it’s gone, you see. And you think, well, do you know actually why he’s having it. Because I don’t necessarily, some of the things – like all this, if something happens while I’m there you’re conscious of what it is. But then there are other things that happen when I’m not there. Timings. And so you don’t know why he’s on a particular strength of a drug. I hesitate to give a reason even if I think I know because I might have got it wrong. You know, I’m not…

Helen: You know a lot more than you used to know, that’s for sure.

Mark: Problems with his – the last two things he went in for, was at Christmas he went in because he had what they thought was an abscess on his rig site – it turned out not to be but it was an infection. And the theory was that he was going to go in – the GP at hospice, spoke to somebody at the hospital, because he’s– his – the hospice is in a different area, Health Authority, to where we are, although it’s only fifteen miles down the road. So he goes to not my general hospital, which is up this end, but he goes to one in [name of hospital] instead. 

The theory – and he – the GP had spoken to the specialist, yeah, he’ll come in, we’ll look at the rig, see if it needs replacing or whether it’s still viable or not, put him on intravenous antibiotics to get – as a bigger jolt to get rid of the thing – because he’s on a kind of a low level antibiotic thing for his lungs all the time, and that seems to work. And he should be in and out in twenty-four hours was what they were saying. Well, he went in on the twenty-third of December, and he came out on the sixth, seventh of January.

And in the end the rig fell out of its own accord, because they were humming and hawing about whether or not to do something about that. They then decided he was that ill that he couldn’t – unless that healed up there was no point in doing anything further, so we were having a bit of a dousy about that. Because of his – and this was – I think the hospitals aren’t –he goes in for one particular issue, but he presents them with a range of complications. And he was supposed to go up to the gastric ward but they couldn’t handle the fact he’s got a tracheotomy, so he couldn’t go to the gastric ward.

He still has a trachy?

Mark: He still has a trachy, yeah. He doesn’t need oxygen, most of the time, when he’s got bad lung problems they give him an oxygen supplement at night, but generally speaking he breathes entirely of his own, own volition, whatever. , but he does still have a trachy. , they then decided to put him in a pre op ward, which is where he went, because he was, he was hours and hours in A&E while they were deciding what to do with him next. They put him in a pre op ward and then – he didn’t get there until eleven, twelve o’clock that night I think. And, and I was thinking, oh, well, they’ll settle him down in here and I’ll get home for a couple of hours. 

And then I’m sat there with him and they’re having a row, two doctors outside his room, right, because he was in an unsuitable place, it was dangerous for him to be here, they couldn’t look after trachys, it was a pre op ward, people arrive here, they’re not actually ill yet, they’re waiting for an op tomorrow, so they’re just – it’s like a hotel isn’t it, really, they’re turning up for a good night’s sleep before they have the op and then they go to somewhere they can. And then you think, oh Christ – they couldn’t find stuff for his nebulizer, tubing and bits and pieces for that they were scrapping around looking for things for that. 

And it was just a whole bad experience. Eventually after some toing and froing, they decided to move him forty-eight hours later up to, a head and neck ward, where there were people with trachys for all kinds of other things, but no gastro people. And then they’re coming in saying, “Oh yes, he’s here, and how’s his head and how’s his...” I said, “He’s not in for that, he’s in for his...” “Oh, oh, right, right. Well, that’s looking very nasty, isn’t it, we’ll have to get the doctor – get gastro down and see him.”

It’s what they can't deal with, complex needs, yeah.

Mark: Because that’s not our arena, you know. 

That’s right. Yeah.

Mark: And by the time they moved him there, all the stuff they’d found for him down in that ward – because this ward’s nine floors up in a different building – they lost it again and had to start all over again. And you’re thinking, you just make this so difficult.
 

Helen does not know how to speak to her brother-in-law, and Mark feels the same.

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Helen: But – and I struggle with a man that I don’t know intimately, I found myself talking to him like a naughty two year old. And sometimes I think, if you can hear me [laughs] I’m so sorry, but I can't, I can't actually do it any other way. I can't, I can't have a conversation with him, and I can't hit the right tone, apart from this naughty boy thing. Which I think if he can hear me he’s going to hate [laughs] it, he must be hating it. But – so I kind of would like confirmation that that doesn’t matter to him, that he can't hear [All laugh]. Or confirmation that it does matter, in which case I will really struggle to try and talk to him like an adult instead of a child. 

Mark: It is different – talking to somebody in that situation is, is, is surprisingly difficult really. And I, I thought originally that that was because he was in the condition he’s in. [Um], but then again, when you think about it, we wouldn’t have had inane conversations about the weather and the price of beans for the time of year or whatever before this happened. And, and the kind of things we would have talked about before this happened you just can't talk about with him now really. 

Because, because there’s things that will point – or they’re about things that you don’t want to remind him about. I don’t want to have discussions in front of him about what’s happening with this house and what’s happening with his car and what’s happening with his business and all of that kind of thing. Because I think if he is aware then he’s just going to worry about that and, and – because aware and worry are the same thing to me, isn’t it, and you kind of think, well, he may be thinking, oh, I wonder what – but I wonder what is marginally better than, oh, the buggar’s selling my house now, you know, or whatever it might be. 

We’re not at the minute but we will probably get to the point where that will happen. So, so conversations are difficult. And you end up saying, “Oh, it’s sunny today, isn’t it?” And as soon as it’s out of your mouth you’re thinking, what are you saying? [Laughs]. 
 

Mark describes the challenges of simply redirecting his brother’s mail or paying his bills.

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The form filling side of it was a real pain because he couldn’t sign anything and yet he was supposed to and, you know, the number of discussions we had about, “Well, he needs to sign a form.” And you’d go, “Well, he can’t.” “Well, then you can't...” nothing happens unless he signs a form. Even redirecting his mail still hasn’t been possible because he can't sign the form to do it and they won't do it any other way. Even the solicitors haven't been able to do – sort that out.

For me it was the mobile phone, it drove me mad [laughs].

Mark: Yeah, yeah.

I just wanted to cancel her mobile phone—I couldn’t do it.

Mark: Well, you see that – what surprised me was when – because we were trying to sort all sorts of things out to do with his house and his electricity bills and some companies were really great. His mobile phone company were excellent, I’d have to say, which surprised me. And they said, “Well, we’ll just put his account on hold, we’ll switch it off and you tell us when, you know, as and when he might have a use for it again or if he doesn’t...” I said, “What about what he owes you?” “Don't worry about that,” they said, “We’ll just leave that on hold and if he comes through this and he’s okay he’ll owe us that when he’s ready, but don’t worry about it.” And I thought, well, that’s a really forward, you know, impressive response. That’s – that was the phone company. The electricity company though, well, we’d been through, you know, they’re going to knock his door down with a policeman to disconnect him, even though the meter is outside but they still need to get inside. They wouldn’t arrange a date to do that so that I could meet them there to save them knocking the door down. They were – well, what happens about boarding his house up? “Well, the police might do that if you’re lucky.” Don't – you know, just completely unhelpful, painful situation over I think it was eighty quid’s worth of electricity. They wouldn’t let me pay for it because I wasn’t the account holder. 

Helen: How can they refuse to let somebody settle someone else’s bill—that just doesn’t seem possible, does 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.

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The pressure carried on building in his head in spite of the craniectomy, is it they call it? So there was then a discussion and a debate about whether they needed to do another one to take the other side out, which is less usual, but, you know, it was doable. And that was one of the early discussions about whether an op that somebody felt needed to be done but then weren’t sure whether for his potential quality of life and his, you know, ongoing potential – whether it was the right thing to do or not. I know some of those discussions were – I mean, I can appreciate the need to have them. You know, and I should explain, although it was my brother we’re talking about, we’re not a particularly close family. He’s not someone that I knew on a day-to -day basis very, very well. We’ve lived two hundred and fifty miles apart for years and years and years. If we met once every couple of years that would be unusual. He wasn’t the kind of individual that would go to family dos like weddings and funerals – he would go to a funeral under pressure but he wouldn’t go to – he wasn’t a sociable kind of individual. Very different from me, we’re like chalk and cheese, and had very different lives. He’s got his own kind of lifestyle, and his own, own existence. Which we knew – I knew very little about.

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

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Mark: What – the questions I was being asked really were more about what his lifestyle – whether he was a sports type person or not. And it was quite clear fairly early on that what they were trying to decide was whether he would have any quality of life after carrying out this operation, whether – if it – even if it did work. I don’t think they were convinced it would work for one thing. And they were quite, you know, upfront about that. My view was I think he, at that stage, he – I’m not sure I’d think quite the same now because we’re three years nearly down the road, but at the time, you definitely – I felt he deserved every chance that he could get for survival. Whether he could walk again or not would be a big loss to him, but it wouldn’t be a kind of life critical thing for him. Whereas I could see it would be for others. And the discussions were largely round about that and then, you know, obviously it’s a risky operation. The operation itself could, you know, do for him ultimately, whether or not it would have worked otherwise. And we must have had two or three of those I suppose, before they ultimately did decide to do it. And I went away from some of those thinking, “are they actually asking me whether they should do it, do it or not?” Because I was saying, “Yes, I had no problems with them doing it because I could...” the status quo wasn’t going to work. There was no point of things staying the way they were, the pressure in his head was going up. We were watching this monitor thing morning, noon and night, weren’t we, and it was just increasing slowly all the time. So clearly to me something needed to be done or we were going to give up on it. Well, I wasn’t for giving up on it. Some of them obviously weren’t either, but I think some of them were. And I think there was a – you know, they weren’t really sure of the level of physical damage to the brain on the side they hadn’t taken out. And I got the feeling afterwards, when they had done, they, they – if they knew that I don’t know that they would have done it I think. I think there was becoming more damage when they got into the second side than they’d expected, from what the doctor said after the thing. Because that was the first time they talked about physical damage to his brain, as opposed to just, – and actually having to remove some of it as well. And—

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…

Helen: Yeah.

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

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Many of the families I talk to believe that they’re the decision maker.

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.

Really?

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.

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Mark: The hospice were phoning up – when [brother] got to a kind of fairly critical stage with a lung infection or, you know, something else, there’s always this debate about whether he should go to – into hospital or not. Because there, there’s a level at which they can no longer treat it. And they can do an awful lot, but there are one or two things, like intravenous antibiotics for instance that they can only do in hospital, he has to go to hospital for that. 

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.
 

Mark accepts the DNAR notice is right for his brother.

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What – do you know what ceilings of care there are? Like if his heart stops, does he have a DNR?

Mark: There’s a – he’s had a DNR notice since he left London, which we’re aware of, was discussed with us. And he did have a cardiac arrest in the middle of this – between the two—

Hmm.

Mark: Was it after his second craniotomy?

Helen: After his second I think.

Mark: Yeah, he had a cardiac arrest and they – he was resuscitated at that point. But at that point they said, “Well, you know, every – if this happens again, then that is just going to increase damage to his brain and everything else.” And I’ve read up on it a bit more since then, I didn’t know, they could have been telling me anything at that point. But – and I don’t disagree with that at all.

Because the only decision you can make is benchmarked against where he is now. So, you know, I can accept the DNR thing because that doesn’t make sense really, because he’s – that’s certainly not going to improve his position if he gets to the stage where he needs, needs resuscitation. And I know from reading up on it that, you know, if I discovered things that said, well, you know, you can resuscitate people and they’re perfectly untouched in any other respect at all, then I might be arguing the point. But I know that’s not the case because of – because, you know, I’ve looked into it. So that does seem like a rational, reasonable decision to make. And it wouldn’t be in his interest to do that at this moment in time. 
 

Mark’s brother has been unresponsive for 3 years, but Mark believes it is too early to contemplate withdrawing ANH.

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Mark: Not that easily but, you know, and it shouldn’t be that easy either. But it is one possible route. 

Could you ever imagine circumstances under which you would think that was the right possible route?

Mark: If he deteriorated. I think his level of existence is probably about as low as I could, I could think as being – I won't say reasonable, it’s not reasonable at all, tenable. If it was decided he was completely vegetative and his physical condition started to go downhill – I mean, his organs are fine, you know, they do regular tests on his liver and various other things, and check his food tolerance and all the other bits and pieces. So to all intents and purposes he’s a fully functioning human being as far as I’m concerned. Other than there’s some connection missing between here and here that prevents him doing anything about anything. And nobody yet has said to me that that’s permanent or that that isn’t just suddenly going to open up, reroute or whatever it does in those cases. So I’m not saying that I would never consider it, but I just don’t think it’s the right thing to do for him at the minute. 

Okay. So you’re not saying you would never consider it. Because some people are really horrified by that, they think it’s cruel, you wouldn’t do it to a dog, it’s—

Mark: No, no, well—

Withdrawing food and—

Mark: I can see that, I can see that. But then—

Parents especially.

Mark: Possibly other people would say they wouldn’t do to their dog what I’ve already allowed to be done with [my brother] I guess. If one is being blunt about it. And I don’t know where that line is, I really don’t. And I don’t think it stays in the same place anyway, I think as time goes on it changes. I think as his condition varies – you know, he is actually, in spite of what’s happened at Christmas relatively fit looking compared with how he was, you know, was from the accident. He’s put on – put weight back on since the accident. His colour is a lot better, isn’t it?

Helen: Hmm.

Mark: He actually – apart from the two big depressions in his head, there is no external evidence of there being any kind of issue at all with him really. And as I say, he breathes fine, he’s got a reasonable swallow, he can cough up – when he’s got a lung infection, most of that he can deal with. They have to provide some suction support, but most of it he ejects, he’s got a strong enough cough to get shot of it. So all of that to me means that he is kind of still relatively fit as an individual. Now if he went downhill from there and it – he didn’t recover from that then, then I would feel possibly differently about that. I wouldn’t want him to be permanently with a lung infection for instance, because that’s a horrible, horrible thing. 
 

Mark and Helen view withdrawing ANH as very different from switching off a ‘life support machine’ such as a ventilator.

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Mark: And the, consultant at [the] specialist neuro hospital said, that really it wasn’t in his opinion in [my brother]’s interest to carry out any major operations on him. Which I can understand and I, I don’t entirely disagree with. But it’s – but it was – but the replacing his rig, that isn’t what I would call a major operation.

So major would be what, if he got cancer or something?

Mark: And that is mainten – it’s kind of maintenance, isn’t it? If it was – if he was a car, and he’s not a car, but if he was, you know, if your water pump goes you replace your water pump, don’t you, and if he needs a rig to feed him then replacing that is part of his kind of care maintenance if you like. Which is why we’d agreed to the super pubic catheter because that was a better way of managing his circumstances. And I could – and he went in for an op for that and came out fine. So, I, at the moment think that, you know, that’s the kind of thing that should be done. It – on a normal week without – he doesn’t need any kind of intervention other care. He doesn’t, he doesn’t – he can breathe fine – he’s, he doesn’t need any technical support with that at all. 

So that’s what you meant when you said we’re not keeping him alive, he’s—

Helen: Yes, there isn’t a machine—

There’s nothing to switch off.
 

Mark and Helen talk about the need to gather ‘balanced’ information from different sources.

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This is going to be information for other families in this sort of situation. What would you like them to hear from you about what they’re facing? And how would you like – what sort of information do you want to give them? Or what message would you want to give them about their situation?
 
Oh, that’s a responsibility, isn’t it? [Sighs]…I… it’s trying to keep a balanced view I think. Which sounds – what I’m going to say is don’t believe the first thing everybody tells you. And I don’t mean that in a, you know, you can't trust anybody sense. Because I think everybody is telling you what they’re telling you for the soundest of reasons and with the best of intentions. But in fact, the thing that surprised me right from the get go was that you could have two, you know, well respected consultants in similar fields who could come up with two completely different opinions of, of somebody’s lifespan, their prognosis, their, their – the potential for improvement. Whether it’s worth doing anything or not almost. …And it’s all – if there’s any way you have of getting a second opinion or a second, second perspective on it then, then do it.
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