Cathy

Brief Outline: Cathy’s 16 year old brother, Matty, was severely brain injured when he was hit by a car. Emergency interventions and surgery meant Matty survived, but he was left in a permanent vegetative state. He was eventually allowed to die eight years later after artificial nutrition and hydration was withdrawn.

Background: Married, mother of one son, works in the Book industry.

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Cathy’s brother, Matty, a sporty, academic boy of sixteen, was knocked down by a car when walking back from a night out in 1990. Cathy, herself just 17 at the time, was called to the scene and helped as the ambulance men treated him – they told her “talk to him, love, keep him with us” – which she tried to do. Matty was resuscitated and given a craniotomy – the surgeon told her father: “I’ve saved your son’s life…. We don’t know yet whether that was the right thing to do.” She recalls her father saying: “he’s a big lad, he’ll get over a knock like this”.
 
Matty may have been minimally conscious for a short while, but developed epileptic fits and deteriorated, and entered a permanent vegetative state. However, his family were determined that he would recover. They brought him home after nine months in hospital and built a specially adapted bungalow next to the pub they owned, and looked after him there, with a dedicated team of paid carers. Cathy would sing and dance for him, and always, always talk to him – for the first four and a half years she was totally convinced that he knew her. Regardless of what professionals thought about Matty’s brain function, the family made a pact that they would always behave as if he could fully understand everything around him. Cathy thinks this was important and respectful in many ways but, in retrospect, she feels may have tricked them into not being able to face the extent of his brain injuries. She also wonders now whether the professionals thought they were just completely misguided in their “miracle mindset” as they tended to this “body shell”. 
 
It was not until Cathy went away for three months several years after the accident that, when she returned home, she saw what was going on through different eyes. She came to believe it would be better to allow her brother to die and to bury his body, rather than keep tending to it pointlessly. Eventually the whole family came to this view and they initiated court action to remove artificial nutrition and hydration. Cathy found the whole idea of “starving” her brother to death deeply disturbing, but thought it was better than keeping him in his current state. Being implicated in initiating the court action, and swearing an affidavit that she wanted her brother to die has left her feeling very guilty – “like a murderer”. Although Matty’s eventual death, after ANH was removed, seemed peaceful, she still – when interviewed sixteen years later - feels traumatised by what happened to her brother during the eight years after his accident and the whole process around his death. She is haunted by the question “what if he had some minimal awareness?” – but thinks, if he did, that would have been all the more reason to allow him to die. She just wishes he could have been helped to die sooner, and through terminal sedation, rather than having to go through the process of a court case and put him through ANH withdrawal over thirteen days.

Cathy’s teenage brother was hit by a car as he walked back from a night out. She rushed to the scene and remembers the ambulance men saying ‘talk to him love, keep him with us’.

So my brother Matthew was sixteen and I was seventeen and he was knocked over by a car on his way home from an evening out. We’d both been at this place which was just a mile up the road from where we lived and I’d gone home earlier. And he was on his way home and got knocked over by the – got knocked over by a car. Another driver stopped at the accident and came to our – we lived in a pub in the village, came to the pub. So I was in bed at the pub and I sort of heard a commotion in the car park. Which wasn’t that unusual, because people often rock up back at the pub looking for something they’ve lost or – and he said, “Does Matthew [surname] live here?” And I said, “Yes, I’m his sister.” And he said, “You’d better come then, he’s in trouble.” 

And I think a lot about that, because I think ‘trouble’ – trouble is sort of a worrying word, isn't it, but it’s not a big word, is it? If you say somebody is in trouble you don't – well, I had no – I didn’t know what had actually happened and so I didn’t tell my parents, I just went. Because I thought it would be something that I could sort out. And then of course I got out of the car and got there and realised that, that it was beyond what I thought of as being a possible thing that could have happened. Too late obviously to tell me parents. It was before mobile phones – which I often think is funny, again, when I’m – I often think about how the whole thing would be really different now if it was – if it happened now, that it would all be – so many things would have happened in a different way.

But we went in the ambulance to [hospital]. And I knew straight away how serious it was. So he was unconscious in the road. And the am – I could tell from the way the ambulance way were behaving that it was a really serious thing. And one of them on the – said on the radio, “We’ve got a bad one here,” he said. “I think we’re talking [name of hospital].” Which was one of the big hospitals. So I knew that name, I knew that was the name of a big hospital. And the ambulance men were really kind, they sort of gave me little jobs to do, they were cutting his clothes off and they were, they were – I was fitting – they were showing me how to sort of put the suction pads on and, and the ambulance man said, “Keep talking to him, love, keep him with us.” So I just kept talking. [Speaking tearfully] I didn’t think I’d start crying this early in the story, because this is the point he’s – this isn't even the bad bit, you know [laughs].

Cathy was left hoping for recovery many years after her brother would have been defined as being in a ‘permanent’ vegetative state, (highly unlikely ever to recover consciousness).

I learnt there are just so many things that are worse than death. And I think the uncertainty as well. I still have difficulty tracking the sort of gradual erosion of hope I think is really cruel. That sometimes I think is the bit that I find most difficult to think about. Say the first year, possibly two years, when we were so absolutely intent that we would find a way. I’ve read about this now, very recently, as the miracle mind set. And I didn’t know this existed as a thing, but I can completely see how it works. And that is the thing, you get – because [sighs] you take the survival of your person, you know, their emergence from the accident, from surgery, from those first forty-eight critical hours, all that time you just want them not to be dead. And they’re not dead. And you think it’s just the first stage on the way to the miraculous recovery. And then you wait for the miraculous recovery to happen, well, not wait for it to happen, get involved in making it happen. And then it doesn’t happen, nothing else happens. 

The erosion of hope was very cruel, but was it good to have hope for a while? 

I mean, you have to try, don't you? I was talking about this with my mother recently, we were talking about whether [sighs] – she was saying if she’d been less – you know, she couldn’t really – we couldn’t work out the word, less what, less maternal? Less ferocious? Less committed? Less intent? Less prepared to give up? Would we therefore have not – would it therefore have not carried on so long, and would that therefore have been – again, we didn’t use the word better, we used the expression less worse [laughs]. But, I mean, I’m not sure, not sure. 

That’s the other thing, I’m not sure I’d actually – I’m not sure I’d do anything different over the trying. I think it has to probably take as long as – but I don't really remember – and then everything, you know, I don't want to be mean about anybody that helped us, but I don't really remember any proper or robust advice about – so there’s a period where you really have – I mean, some people do make good recoveries, obviously you have to try. [Sighs], but I suppose people don't really know about the prognosis or that was definitely – all we ever really got really I felt was people saying, “Oh well, nobody knows.” [Laughs] And maybe nobody knows, you know. But it also – but I also think we had the wrong – we just sort of had the wrong end of the stick. 

It was only after she’d been away for a while that Cathy realised how difficult the situation at home was with her brother, Matty. Later she found it hard to visit at all – not wanting to look into his ‘unseeing eyes’.

I went to France for a year as part of my degree. And that definitely changed – definitely that distance – it was when I came back from France, I remember, I remember coming home at Christmas and walking into our bungalow – we’d had this extension built on the back of our pub to house Matty and my parents had a physio room and, you know, all sorts of stuff. And I remember walking in and he was kind of propped up on the sofa and someone – I can't remember who it was, but it was one of the people that looked after him, was sort of massaging his feet. Which I think is a bit biblical, isn't it, again, I think somebody in the bible like massaged Jesus’ feet or something. And I just remember thinking – just looking at this poor thing, you know, this poor body, and just thinking, – I remember the actual words I thought – it’s swearing if you don't mind – I just remember thinking, I just thought, he’s fucked. He’s fucked and this is fucked up. And that’s what I thought. And I don't think I’d have seen it if I hadn’t been away for three months and come back. I think it enabled me to see it. But I thought it, but I didn’t say that out loud, and then I sat next to him and told immense amounts of lies of all the interesting things I was doing in France. Whereas actually what I was doing in France was getting really drunk on my own in my little flat. And walking round war cemeteries and sitting in the library of the Holocaust museum. 

But obviously when – I think that’s what people also don't understand about – it’s really difficult to explain that it’s the eyes open that’s actually much more distressing really. Unseeing eyes. I found that really…I found that really difficult. And when it got to the point where – when he eventually went into a nursing home and we – when we decided to apply to the court he then went to a nursing home. And I didn’t really visit after that. I couldn’t face it anymore, [speaking tearfully] which I still feel so guilty about. But it was his open eyes I didn’t want to see. … And I remember once trying to explain to someone, and maybe I just did a bad job, but I couldn’t explain why…why it was so terrible. But I think it’s something to do with the idea that we have this idea, don't we, that the eyes are the window to the soul. And probably in the early years I spent so much time kind of like looking into his eyes, trying to divine awareness and hope for awareness. …And then later, you know, coming to the time where I really thought that – well, I absolutely thought there was nothing there but still felt terrified that there might be. I still feel terrified now at the prospect that he had any awareness at all. So for all those early years of desperately hoping there would be some awareness that we could find and build on, whereas now I just hope there was never anything, I hope he never knew anything. 

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’

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].

Cathy thinks people label her a ‘bitch’ for enabling her brother to die.

They ask horrible questions. And the one that I fear is the one – the one now, after I’ve choked it all out, after I’ve explained about the accident and the eight years and [speaks tearfully] going to court and having to write an affidavit that I thought he should die, which is a horrible thing to have to do. And then if I can bring myself to explain what withdrawal of nutrition and hydration is, which is a horrible thing to have to do, all of the time which I’m terrified that the person listening to me is actually thinking like, what a bitch. 

And then the question I sort of dread is they’ll say something like, “Oh, but people do wake up though, don't they? Because I read about this guy in Canada and he woke up after twenty years and he was fine.” [Laughs] And then it’s kind of like – it’s not the person’s fault but they’ve just kind of said to you, “Oh, maybe you just murdered your brother for no reason.” And then again, I just don't know what to do. So that’s kind of one of the reasons why talking about it is so difficult and I try to avoid it. But then if you – there’s that other thing about what you say, isn't it, because if you – one of the good things actually I think about getting older is people ask less about siblings. Whereas at the time – because what I found quite – so basically like within our village I definitely – I mean, I became, you know, the sister of coma boy, and the girl from the [pub] and my parents’ daughter. People would ask me in the street, they’d say, “How’s your kid?” they’d say. “I don't like to ask your mum and dad.” I never quite knew what that meant. Like why is it okay to ask me then, I don't know. I still don't really get that [laughs].

Cathy has been left feeling guilty for ‘trying to have a life’ herself.

I spent ages thinking – years thinking that it would have been better if it was me. I somehow managed to – I don't know how I got this, something to do – something somebody said on the night of the accident, miracle mindsetting again, somebody said something about how the only reason he’d survived was because he was so fit and strong. And which he was, you know, he was a fine physical specimen, all – did all sorts of sport, you know. 

And from that I managed to extrapolate the idea that if I had the same accident, if the accident happened to me, I wouldn’t have survived because I wasn’t as fit and strong. Because I smoked and didn’t play football every weekend. Which – I mean, I don't know now, but that to me, at a distance, that sounds like a bit bonkers to me, that surely in kind of percentage terms I wasn’t very much less fit than him at all. But somehow I managed to get this idea that if it had happened to me, I wouldn’t have survived at all, so therefore it would have been much better if it had happened to me. But I also felt that if it had happened to me, I just felt Matthew would have been much more robust at being able to cope with it. I feel guilty at trying to have a life at all, but I also can see that it would have been much better if I’d been better at having a life of my own [sobs]. Which I think is what he’d have done. I think he would have been much quicker to say, “Come on, mum and dad, you know, we all loved her but this is fucking mental.”

Cathy had written down her own wishes, and would like other family members to record their wishes in writing too.

So if I was in that situation again, I would be wanting the person to die. I wouldn't take the risk. It's terrible, isn't it, really? So as much as I love the people that I love, if I was on the receiving end of the dreaded phone call and if I was told… it's back to the “fate worse than death” thing. If I was told that, I want to say my little boy but I can't. It just feels too like asking for it, so I'll just say, you know, like someone I love. I'm certain if I was in that situation again, I wouldn't be praying for somebody to be, to live at all costs. Probably the opposite. So if somebody, if somebody told me that someone was in intensive care I'd just be thinking, "Oh god, just let them die." [Long pause].

And if you had a major head injury and were in intensive care, early on, seven days, what would you want?

Oh yeah, let's not take the risk. Let's just… I wouldn't want to be… I wouldn't want anything done to… The thing is I wouldn't want an opportunity to be missed, you know, an opportunity for death early on to be missed, if it couldn't be… I don't mean that if I stubbed my toe I'd like someone to hit me over the head with a hammer and finish me off. But, but that's kind of like not far off how I feel [laughs].

What about if it was a head injury but there's still a 20% chance that she'll come back to independent life but we’re in the 80% region that she might be severely brain injured?

No, I mean I would hope in that circumstance that people would just let me go.

What if it was 50/50: 50% chance she might just come back to an independent life, or a life that she would value and a 50% chance that she's going to remain severely brain injured, vegetative, minimally conscious? 

Still I don't think I'd take the odds, to be honest.

You've got a lot in common with most neurosurgeons.

[Laughs].

You're about the same place as the most neurosurgeons are, whereas most of the population are, "Oh, 5% chance of meaningful life, I'd take it," because they don't know.

No, they don't know what the concept, what the other side looks like.

It's like binary thinking. They think in terms of life or death, whereas you know what can happen if you miss that opportunity. So have you written down your wishes?

I've sent my mother an email about it. But I think I will, I think at the time I did that there maybe wasn't a form or I didn't know that there was. So I think I shall write down the proper form. It would probably be taking too much upon myself to issue one to all my family as well. Can you fill this in so I'm not looking after you? But it's terrible isn't it, but that's sort of what I'd like to do.

Mum, dad, happy Christmas.

Yeah, can you fill in these forms, please? Because if you, you know, become really, really ill, the deal's off. I don't feel anyone should have to, I don't think anyone should have to live in that condition and I don't think anyone should have to witness it. I think it's the cruelest thing, just to see the transformation of someone into that is such a cruel thing.

Cathy wished the clinicians had called a best interests meeting instead of having to be the one to start conversation about treatment withdrawal.

And I don’t think– I don’t think I should have – I think I should have obviously been sort of, you know, interviewed. But I don’t think I should have felt that my – I don’t think that the onus of responsibility should have been on us. 

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. 

Cathy expresses doubt about the power of doctors and courts to make ‘best interests’ decisions.

I'm wondering if we'd have felt different, I think the thing is, we flew, we threw ourselves into this miracle mind set, didn't we, and nobody really told us otherwise. Whereas I'm wondering if somebody, you know, if I could have, if I'd read that two weeks in, I'd have had another frame of reference, I suppose. So I'm not… so it's difficult. It disturbs me as a person to think of… you know, it disturbs me to think of people… of people being sort of hastened to death before families are ready. 

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.

Cathy originally thought her brother continued to survive, because at some level he wanted to be alive. She now sees this rather differently.

Was there a point when he was fighting infections you thought, he’s a fighter, he wants to live, early on?

Oh definitely, yeah. Which is another interesting thing actually, I’d never thought about this before, but it’s about nutrition, hydration. So apparently when people, you know like, apparently when people sort of slightly give up on life and then die, that’s because they stop eating. You know, so like old people, or people who have been widowed, and then, it’s because they stop eating. So obviously we’re pumping all this fabulous nutritious food into him, because you think don’t you, because again the bit of you that has this idea of a soul or a brain, just thinks, well at some level he must want to stay alive if he’s staying alive. Whereas actually, the reason why people can just turn their face to the wall and decide to die is because they stop eating. 

Cathy fought to ensure her brother’s feeding tube was withdrawn, but she also says prisoners on death row get a better death.

The specific thing I think is that I don't think I should have – I don't think me or my family should have had to feel responsible for doing it. I also don't think it should have taken so long. I think with better advice it wouldn’t have taken so long. But even with that, I don't think we should have felt responsible for doing it, and then I really think – I get, I get the legal thing around it’s a withdrawal of a treatment, but it’s just so – isn't it just so awful? We do stuff to human beings that we wouldn’t do to a dog, that just can't be right, can it? There’s got to be some – given that it’s so rare as well, you would think that – I understand about not establishing precedents, but it’s not like it happens a lot. And with all the thing of the court case, I just think, oh, I just think it’s– it seems to me to be a pinnacle of like not civilisation. So we actually – I know not in this country, but globally we will execute people by lethal injection but globally when we’ve decided somebody in that situation needs to die, we have to starve them to death instead. I mean, that’s just got to be wrong, hasn’t it? 

And you feel as well, you feel that that’s [sighs] – the reason why that still happens – and it will be because people in suits – probably mainly men in suits, will sit in dusty rooms and say, “Oh, we don't want to establish precedent about this.” And nobody actually thinks about what that is like. Because I think anybody that’s had to live thirteen days of knowing that your [speaks tearfully] brother’s internal organs are breaking down and waiting for him to die, I think anybody that had lived through that would find a way to get over those little legal hurdles so that other people didn’t have to live through that situation. And I think if people had experienced that, that’s what they’d do. 

Cathy was excited to read the National Clinical Guidelines brought out by the Royal College of Physicians in 2013.

But also to say more about the RCP guidelines. So reading them—

Well, it was just – it was actually blissful. I just felt– I felt not alone and I also felt – it’s funny, isn't it, because obviously it’s quite a long medical report. I wanted to run around, I wanted to find a car park to run round with, waving this report and waving a football rattle in my other hand sort of cheering. Because it just felt sort of – so bits I – the bits that were particularly yes, yes, yes, were about – there’s a bit where it says after – if there’s a diagnosis of PVS after a year it becomes – and I think the expression is not only appropriate but necessary to consider withdrawal. And that’s the thing, you know, it was six years before we kind of – probably because I eventually said to my parents what I was thinking that we then… were put in the situation where we had to do it ourself. And the very fact that the report says, in the past, it says, families have had to do this and they shouldn’t have. And I thought, yes. Because I don't feel we should have had to. I mean, my parents had to be the plaintiffs, and Matthew had to be the defendant. Which is just so horrible, isn't it? 

And actually all the people involved were really kind. So the process was awful. Every single individual – it’s not something you can fix with a bit of customer service training, all the individuals [laughs] were incredibly kind, and everybody at the court was incredibly kind, and – but just the process of it was so awful. 

And then the – and the stuff, reading about how it felt – because I still feel very guilty about the fact that I couldn’t –I didn’t last out the withdrawal process. [Speaking tearfully] I was sort of supposed to but I just actually couldn’t, because we’d been told it would take seven to ten days and it took thirteen. [Sniffs] And I think halfway through day eleven or something, I just couldn’t. I just, I just couldn’t do anymore [cries] I had to go back to London. And I still feel really bad about that. 

But again, reading the report that said about how important it was that even proper medical people used to doing this as their job needed to be counselled around it, and how it should – you know, and all the things that could happen. And I just thought, yes, it shouldn’t have been what it was. Because we – because again we didn’t feel it was right for the nursing home to have to do it. And it’s not like anyone else was offering, so we brought Matthew home. Which both my parents wanted to do, and me, we all sort of thought that was the right thing to do. [Sniffs] But yet it was my mum and our friend who looked after Matthew and she carried on looking after him every day at the nursing home. So it was my mum and my dad popping out to buy groceries and me unable to cope [laughs]. And then just reading the report and seeing what it should be like, and just thinking, yes, it shouldn’t be like that, should it? It shouldn’t be like that. And that, that people need to be counselled, and that’s okay.

Cathy was grateful for the kindness of all involved but, sixteen years later, remains very distressed about what happened. She highlights how families can be left feeling very guilty if they are the ones who have to start the discussion about withdrawing

Well reading the transcript of the court and… I do remember how kind everybody was at the court and how they talked a lot about the sort of level of care of Matthew and the devotion and the tragedy, which is what – [reads from court transcript] “it’s a very moving account of how the family had to face the appalling tragedy which confronted them and how they had to live with the day-to-day knowledge which grew upon them that there would be no hope of recovery”. That’s a good way of describing it, its a knowledge that grows upon you.

Last paragraph, he says: “I would like to express my appreciation of the tremendous care which has been given to M by his mother, father and sister and to express what I’m sure all those in court will wish to be associated with the very greatest admiration for their courage and the care which they’ve given to him [tearful]. I believe the time has come when the reality of the position must be recognised and accordingly, I make the declarations”. 
I remember from the court case that everybody was really kind …I remember when we actually got – and the official solicitor also was incredibly kind. So everybody involved was very nice. 

I think it [the court judgment] is very well and almost rather beautifully expressed. [Reading from court transcript]: “They had at the beginning, optimism and hope and one can well understand it, but the initial grave condition was exacerbated quite shortly afterwards by the onset of epilepsy. By nineteen ninety-two, this young man was experiencing epileptic fits fortnightly. There is no doubt in my mind, having heard and read all the evidence that for several years now this young man has been wholly unaware of anything that goes on about him.”

Let’s hope so, you know. 

It’s very nice to read it and I think that it would be nice if I could, you know, give myself a bit less of a hard time about it [tearful]. 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. 

Do you have ideas about what could change to make it easier for another family in these circumstances? 

Well very practically, actually, I just think there should be process. There should be a process that people go into and I can see that it’s obviously – it’s an extremely difficult area and obviously the – one of the big difficulties is that because this sort of thing happens out of the blue, so nobody will have any – probably - won’t have any prior knowledge or experience. So there’s going to be an awful lot of people to sort of absorb from the off. But I definitely feel in terms of if you do then get further down the road and by – I don’t think – I don’t think the onus should be on the families to raise the question of – I don’t even really want to say withdrawal - it’s a bigger question. I don’t think the onus should be on the families to raise the matter of whether the person is really alive, whether the person would be better off to be actually dead because that’s really troubling to have to even come to that conclusion, I think, about someone you love. 

I know a lot of doctors who say: “we wait until the family raise the issue. We don’t want to impose...” 

That’s just awful, isn’t it? You can see why they – I’m sure it’s well-intentioned but there must be a way of saying, “This has happened to other people before and this is – this is how other people – this is what other people have experienced.” 

Cathy is very distressed by the fact her brother took so long to die and is distressed by how he died.

So I think I went up after a few days – the idea was I wouldn’t go there for the whole thing, I’d go after a few days. And we’d been told it’d take seven to ten days. So I think I went up around maybe the fourth or fifth day. …I don't know that it had to be so horrible, I’m not sure it was horrible in itself, I think it was the thought of it [Sighs]. 

But he was making noises. Which again may well not have meant anything, but were just still horrible. …And I think I just did think it was really wrong, I just thought it was really – it’s back to that thing, I understand the idea of not setting legal precedents around it, but it just still seems to me that on an individual case basis, it’s just such a wrong thing to do, revolting thing to do. Again, you wouldn’t do it to a dog, would you? So just the fact as – there’s just something I think really horrible about it. In a way that I don't think – I don't – so for me, if it was sort of an injection or something I wouldn’t find that a horrible thing. So I – for me, it wasn’t the killing so much as the manner of it that I just thought was awful.

And it’s revolting because—?

It’s just such a horrible idea, isn't it? That you’re starving someone. That’s what it feels like to do it, it feels like you’re starving someone to death. Precisely because they can do nothing about it. It’s just so – it was a barrier as well to wanting to do it, so – which I think shows how desperately we wanted to do it, that we were prepared to do that. I think we would [sighs]… I real – and I’ve yet to ask the question about this, but it occurred to me – because presumably – because his epilepsy was so terrible, presumably – and he had – and he carried on having his epilepsy medicine obviously because it would have been so awful if he’d died as a result of an epileptic fit. But presumably on the whole withdrawal thing, we could have just stopped giving him his epilepsy medicine and he’d have died in some awful – but again, we wouldn’t do that, would we, because it was horrible, so then why fore is it – then why [laughs] – I just urgh, ugh, the whole thing, awful. 

But again, I mean, I just probably wasn’t in a fit state to process it really. I don't [sighs]…– my mother didn’t find it awful. She felt really pleased that, you know – it was me that found it difficult. She felt really pleased that Matthew would come home, she felt like she was really glad to nurse him, she felt like she was fulfilling a final duty to him... But I just found it agonising.

Cathy was shocked by the intensity of her grief at her brother’s funeral. She had been so focused on her brother that, after his death, she was left not knowing what to do.

I remember thinking the vicar was doing a good job because what on earth do you find to say about someone in that situation? Because he was sort of telling stories about Matty, that it’s the – you know, what you – Matthew hadn’t demonstrated any of his personality for eight years. So it’s that gap, isn’t it?

But he did a very good job, he was very kind. It was sunny. I don’t know the date of either Matthew’s death or funeral because I decided not to – I purposefully tried to avoid committing them to memory because I can’t escape from the date of his accident and from his birthday [cries] and I didn’t want to accumulate other days in which to feel just, you know, worse. But I didn’t know – I had thought I would feel relief at his funeral and I didn’t. I just was overwhelmed with this avalanche of grief, that I wasn’t expecting [cries] because I really did think I’d grieved. I really did think I’d grieved. And I didn’t think how – I think as well, I had felt – I felt I had a mission, you know.

So after Matty’s accident, I had a mission to make him better and then that didn’t work, but then we knew we had to do this, so that itself was a task I had to achieve for him, and then kind of when it was done, I just don’t think I knew what I was supposed to do with myself. And I think I’d thought – I’d expected that I would feel some kind of relief and I didn’t. I felt relieved for Matthew that he wasn’t alive anymore, for him. But I didn’t feel any – any relief for me at all.

Cathy says be gentle with yourself and keep channels of communication open within the family.

So what advice would you give to other families? What's important for them to know?

God, do you know what I'd really like to do is just be able to give them just like the biggest cuddle ever. It's just such a dreadful thing, isn't it, to think of someone at the start of that. [Sighs] It's very difficult to think of one thing actually, except I suppose I like, I'd really like people to think of ways in which they can be kind to themselves as the, because it's just going to be, like whatever happens, it's just going to be awful, isn't it? So any way that they can think of to try to be kind to themselves during it, and to each other. And to not forget the living people, you know, because I think that can be – that can sometimes be, I think you can sometimes forget the living people.

I said I had an interesting conversation with my mother because I said, because we'd been talking about this so much because I've been writing about it. And I said about how I felt. We didn't talk about it and our conspiracy of silence is that we just don't like distressing each other, so that's why we don't talk about it. And she said, oh, this is so moving, she said that one of the reasons she didn't talk about it is she never wanted me to think that I wasn't enough. [Crying] So she didn't want to like talk about her grief for Matty because she didn’t' want me to feel that…which I think shows that even within very good communicative, communicating families, misunderstandings do really flourish, because I sort of felt I shouldn’t talk about Matthew because I'm always talking about it and it just makes everybody sad, so we're all not talking about it for slightly different reasons.

So yes. So probably what I would say to people, be kind and forgiving of yourself and everyone else. It's not very practical. You can give them practical links and things [laughs].

Cathy thinks the professionals involved, and politicians, need to confront the problems created by modern medicine’s ability to prolong life.

And what would you want to say to clinicians?

I, people just need to take some action and sort some stuff out, you know. And it shouldn't be, the onus shouldn't be on family and there needs to be some good process. And I really don't think people, I really do think, not that I know anything about the area, but if this was in an area in which I had professional expertise, I would, I really do sort of like… feel that everybody wants to dodge the bullet of creating precedent. So that's what I, that's as I look at it from a distance. I sort of think that's what's going on there. Everybody's nervous of, you know. 

But it's going to be one of the big twenty-first, you know, if we could look back, how, as a society, we cope with death now that we can prolong life is going to be one of the huge societal shifts. So some of the people involved I think need to start – I don't mean, I mean maybe there are very good people who already do, but I just think people involved and who have knowledge need to take that up as a duty and make some progress around it. And that would include politicians and stuff, because whenever I do read anything, you know, there's some discussion and then it seems to be there's a thing about creating precedent and then nothing gets done.