In a small proportion of cases it’s clear that the patient has sustained a devastating brain injury from which no useful recovery is possible. And in those circumstances either the patient rapidly deteriorates and dies, or we discuss the situation with family members and come to the conclusion that no useful purpose can be served for that patient by carrying on. Again, in a proportion of patients theres absolutely no question but that the outcome is going to be good with aggressive and rapid treatment. And those patients we do everything that we can without really having to consider whether it’s appropriate or not. There is a large chunk of patients in the middle in whom decisions are never as clearly cut as we would like them to be. And we have to make a decision based on the balance of what the likely outcome is going to be and whether or not the patient would have been willing to accept that outcome.

It’s quite difficult to prognosticate at that early stage and the average member of the public might say, weve got very sophisticated hospitals, weve got modern scanners’ but the sad truth is that the sorts of brain injuries that can result in a devastating outcome may not declare themselves on our conventional scans.

Occasionally, the outcomes are not what we would wish. And they can be devastatingly bad without us having made a mistake. We may later on decide that a decision we made was the wrong one, given the outcome that patients achieve, but it’s very difficult to know at that early stage that the decision was wrong

They gave him a I’m not sure what kind of machine because I was not there but they gave him a machine so that he can breathe properly. He slept for two hours and then he woke up and he wanted water. And my sister and my mum on that day was in, was staying with my father. So he wanted water, my sister went to get the water and then he just stretched his hand, that’s it, he collapsed. So obviously at that time my sister and my mum could not quite understand what is happening. So they pressed the bell, there was a bell, and someone came and saw the whole situation and then they pressed the emergency bell and a whole group of doctors came. And then they sent my mum and my sister out. I think after an hour or so one doctor came and took my sister in and said that, He had a massive cardiac arrest. We revived his heart but because it was a long process our brain cannot survive until if it doesn’t get oxygen for six minutes brain gets damaged. So his brain got damaged. He is in the life support at the moment. So that life support thing, they did not ask us whether we want or not. So just saying that, He is in the life support, well be seeing what happens in seventy-two hours or so.

They said they were switching off the life support machine, that he was brain dead, and they reassured us it was for the best. They said that there was a patient who’d been in the same condition and I think they’d been in the same condition, I can’t remember cause it was such a long time ago, but it was something like three months or six months and I remember my mum breaking down crying, saying I could never cope, I could never cope with this for three months or six months, theres just no way. And they said well, you’re not going to have to make that decision, were making the decision for you, you sit on the bed, were going to switch the machine off, his breathing will go shallow, hell turn blue, you can say your goodbyes and that’s that, so that’s what we did. We braced ourselves, we were around the bed as a family and they switched the machine off and he started breathing. So we were kind of going, you know, hes breathing. Oh no, no, no hes definitely brain dead, hes definitely brain dead, it’s you know, this is just a glitch. You know, well switch the machine back on for half an hour and then well switch it back off again and, you know, same process again. His breathing will go shallow, hell turn blue, you’ll say your goodbyes and that’s that. And he started breathing again. So this saga kind of went on and off and when they did turn the machine off, he continued to breathe for himself, so there was no decision to be made, really. You know, he made the decision himself to kind of stay alive.

And then hope comes back then, that the main thing, is that hope comes back because it’s like well, hes fighting, he is alive and hes breathing by himself, so it’s that hope that he might just open his eyes cause weve all watched the soap operas and of course they just open their eyes and go, oh where am I? And you know, yeah so hope came back, I suppose. There was no kind of anger or frustration I had with the hospital for getting it wrong, we were just so relieved that he was still with us and we hadn’t lost him, basically.

And what happened with other over time, where there other moments of – ?

A few, not many unfortunately.

But for the first year or so, he was in what we could call a deep coma, where you know, if you’d have put pins in him he wouldn’t have reacted at all. So he had a tracheotomy and that was fun, with the cleaning tube going on, just splattering the whole room [laughs]. And you know, the day came where he kind of opened one eye and then he started moving a finger and then, you know, you’re putting the star shaped sponge, which I’m sure lots of families will remember the star shaped sponges to clean the mouth, and he clamped down one day and sort of bit on it and wouldn’t let go, and he swallowed the sponge and we were left with a stick in our hand [laughs]. And you know, so these gradual little stages.

The first moment of when, you know, his finger moved and then when his eyes opened, that was a moment of hope and then when he kind of bit down and chewed, I remember us getting really excited and pressing the buzzers and calling the nurses and kind of thinking something big was about to happen and, of course, it didn’t.

But one day, before I came, this was probably like ten or fifteen days before I was supposed to come back, we told the doctor that regardless of what other people are thinking, because we came to that point, take it off and we will see. They said that he will not last long, he might not last long, more than an hour because his lung does not work. I said, Okay, still we want to see. They took it off, and we let our relatives know that we had a conversation and it’s just to try and see what happens.
And we kept my father in complete vigilance, we were looking at the monitor every second. Because they say that when he will be struggling his pulse will fall, his oxygen saturation will fall and we have to check it. So my sister, then me, my uncle, we are watching the monitor. And then he actually survived thirty hours. Then he started really struggling. Then we said, Okay, put it back, because he has got life, it was not an hour, it was thirty hours.

So we put the life support back on. After he was put into the life support, after it was taken and then it was put back, his situation got better. He started opening eyes and if you go you’ll probably sometimes think that hes looking at you. For a couple of days.

And it was at that time- towards that time that I told him that I’ll have to go on 29th April because I have my viva, but you stay like that, and it would be better if you can breathe on your own, then well take you home. And obviously he does not have any consciousness although people, you know, believe and also doctors say that they do listen to some of the things, so you just need to tell positive things all the time. So on that day he was so (pause) he was looking at me like that, as if he is listening. So I took the opportunity to tell. But then again, some of the days just sleeping, other days again breathing problem. And the doctors they just say, You know the situation, it could be any minute, it could take months. There is nothing new, no new news for us at all. It’s just a routine thing, we used to go, my sister used to sit there for two hours every evening and to pray. She used to recite the Quran every day. And for her that was the best medicine she was doing. And then I had to come.

And then we had to take another family decision again, how long? I said that because it’s a very difficult decision and in the meantime we consulted with the heads of different mosque, different religious people, all gave us almost similar kind of opinion that this is not right, this is unethical, this is against Islam, you should bring him home, you should read the Kolman that we read before if we can before people die, and let him go. You should not keep him in a machine, when he is ready, it’s just prolonging.

And the doctor said to me, Okay, hes very seriously hurt. We don’t know what we can do. Do you want us to treat him? I think they asked my- They needed my permission, I think, to treat him. They said, but when he Hes in a coma, that’s right, they said hes in a coma, which I didn’t know the meaning of anyway and if we treat him, we have to warn you the spectrum is like this: he could come out as he was, or he could come out like that, if we treat him, we don’t know until

Did they say what they meant by like that?

The implicat- I understood what they meant. I understood but I didn’t. You don’t believe. You know, I just thought, Hes just fallen over. You know, Hes going to be fine. And I understood it like that. Is that what they’ve told other people, just like this and this?

People find it very hard to understand what the bad end of the spectrum could mean.

Imo: Well, I didn’t understand it but I knew there was a risk, but I didn’t believe the risk. So really I knew- I did understand they were saying it could be awful, but because I had such belief in my husband’s strength and health, I didn’t believe it was possible.

And they asked you do you want us to treat him, and you said?

Yes.

Because?

I’m pretty sure they did say do you want us to? I don’t- I think they were asking my permission. But, you know, in those moments, you couldn’t say no, could you? You couldn’t- If someones- You know, one minute they were saying If they could treat him and then, and then now they’re saying, Well treat him, so I said yes. The next time I saw him he was linked to a hundred machines beeping, you know, It was a- He was- It was a cold room. He was in a room on his own with a heart monitor, his brain being scanned, his heart being scanned, his it was like a beeping lab. So he was on a ventilator, plus all sorts of things attached to his head. And they did say The sooner it was to try and bring him out of the coma as quickly as possible. And they said, As soon as he- If you come out of the coma within 24 hours or 12 hours, the sooner you come out the better your chances are. And that was what all this equipment, it was to bring him out of the coma.

And did you have a role in that, were you to talk to him or-

No, no, none of that. It was just all machinery then. Doctors and machinery, and a sense of having entered another universe. You’re just standing there, not believing what’s going on.

Andrew: They gave him no hope, right. And at the hospital when they wanted to switch the machines off and we said no, they looked at us as though I said, What, you want to kill him? In other words, like they were sort of acknowledging, wasn’t it, that they wanted—

Peter: They wanted yeah.

Andrew: And we said, No, we don’t want it. And we—

Olga: Nobody knows how—

Peter: In fact we to give him a chance to survive—

Andrew: He survived all them—

Peter: When he was in a coma, he was biting, he was biting the thing, you know, and the actually the doctor said to me, Do you want the best thing is to put a trachy to give him in case someone doesn’t see it and he breaks it and he chokes, hell die. So that’s when I signed and I got them to put a trachy in, to give him that more of a chance to survive. I don’t know whether it was right or wrong, but at the end of the day we didn’t want him to go. If God wanted him to go, he would have died then, innit? It was meant to be. Everything happens for a reason, right, I always believe that in life.

Olga: No, were not going to, you know.

Peter: And one day hell I’m hoping one day hell prove everybody wrong and hell talk. And theres a few people that are going to get a few lectures [laughs].

Andrew: No, hell, hell never, ever fully recover. Put it that way.

Peter: No, but—

Andrew: But everything that he does—

Peter: The best thing, if he could talk, if we could get him to talk.

Andrew: If we could get him to if he does talk, you know, that would be fantastic, you know.

Olga: A big bonus for us.

Andrew: Who knows? Who knows? Only him upstairs. [Laughs]

I suppose a lot of families I’ve interviewed have said he would have died if it hadn’t been for all the intensive care and everything, and then we could have remembered him, we could have grieved him—

Peter: Yeah.

We could have got on with our lives. Does that have any resonance for you or with your values and stuff is it do you never think it would have been better if he had died?

Peter: Sometimes when you’ve been through the hard times you do feel like it, you know.

Olga: But you don’t say it.

Peter: You don’t say it, you don’t want to say it.

Olga: Sometimes you feel like how dare me thinking that. You know.

Peter: And I, I even heard—

Olga: And, you know, other people, members of the family have said it.

Peter: They’ve said it. Weve had I’ve got—

Olga: Hes struggling and all that.

Peter: Yeah.

Olga: Yeah, it’s hard to see him like that, but if God wanted him to go then he would have gone by now. And [Name] is very strong, hes a fighter. So he will fight. And I keep on telling him, and that gives him strength, that’s what I believe anyway.

When it happens to your especially your children you know, your children aren’t supposed to die before you. And, all you want, all you want is for them to stay alive. You know, you sort of listen to a lot of things and you’ve been warned and even sort of advised, they do it very delicately, they could switch the machine off. But you don’t – you just don’t – even despite that conversation I had with him, but then I had his parents, you know, the other side of the family would not have done that. They’ve always been against that. And I didn’t want it either. I mean, no one you can understand. You see them in pain and you see them virtually dead, you know, morgue state, you know, cold to touch, no movement, nothing. And bells keep going and you’re kicked out, being kicked out all the time [crying] and watching his heartbeat going mental. You know, all these monitors I became really good at learning them. And you don’t think at the time. All you want is, I don’t want him to die. But if I had – In hindsight I’d be honest, I would, I would have let him go.

I mean, you were touching a dead body. He went blue, it was like seeing a dead body. It was these blankets over him and, and – that’s the stage, I think, then, if they couldn’t kept him alive and they had to freeze him, they should have said they shouldn’t have done that. They should have just let him, and then he would have died of a heart attack. That’s what – He would finally have died of a heart attack because his – I mean, and it would have been so much easier in the long run. I mean, of course, then you want him to live; but boy, if I could change that time. This is like this is I call it it’s not punishment because but it’s changed though, it’s changed me. I was a successful woman; it’s changed a lot of things. My children, it’s the effect it’s had on the whole everyone including, you know, the [name] side. It’s devastating, absolutely devastating. And his friends. We could have all, you know – Let’s get – At the time I would have been yes but I’m still heartbroken. So this is, like, eight years of suffering [crying]. It’s now going to be the ninth year next April.

David: And I think that when they were operating and so on and later on, we thought, you know, why, why when you opened her head, why did you bring her back? You knew that she was going to be she was never going to be anything but excuse the pun a vegetable. But they did bring her back. But then looking on the other side of I suppose anger, they brought her back because she was a young woman, she was a fit young lady and she deserved every chance. And she did. But unfortunately she didn’t have the strength to or it was out of her completely out of her control, but she couldn’t come back, you know. So—

Olivia: And there was a lot of times when we were quite angry about that, that they must have known.

David: Yeah, why—

Olivia: They operated twice.

David: Not just for her, but for us. You know, how dare they leave us like this, in limbo with someone that’s vegetated, rotting away on a bed and we had to watch that. They never gave us, you know, an option really. But we had to try, we had to try and that’s you know—

David: And I think had we been given the option at the time—

Olivia: We would have—

David: we would have—

Olivia: seriously considered, even at that early not early, early stage, but maybe a bit later on, we would have, you know, considered ending her life for her. And we all felt the same way, there was no one in the family who had any, you know, about what we went through at the end or even like I say not early, early on, but later on we were, you know, what can we do? There was nothing we could do, you know.

Has there been an effect on you of hearing and seeing these different clips from lots of family members? How have you felt about listening to them, and seeing them?

It’s a difficult thing to talk about because I recognize that what I would want is exactly what these family members want. At the time of the brain injury they would want the doctor, if I was their doctor, to be able to tell them whether their son, daughter, mother, father, brother, sister, was going to do well or not. Or if they were not going to do well. And doing well depends on what that patient’s expectations of life are. If they were not going to do well, if they were not going to reach an outcome that they desired, that treatment that was burdensome and futile was not applied. But I’m also left with a feeling of helplessness. Because I know that we simply cannot make those predictions at that stage with any degree of accuracy and certainly not with the degree of accuracy that would allow us to withdraw treatment from most of the patients that we currently treat. So what is the use of me being involved in this? Well, it is for me to be able to say this to families, and say that your loved one is not in this situation necessarily because someone got it wrong. It’s because the best decisions that were taken at the time- the best decisions that could be taken at that time were taken, but despite the fact that they were the best decisions the outcomes may not have been what we would have desired. But the knowledge that nothing better could have been done must be a source of solace. Because perhaps the worst thing that any family member can feel is that an opportunity to do better by their loved one was missed. And though it’s a bit of a negative point, knowing that that was not the case might be of some benefit to the families.

A very small proportion of patients who come through our unit, probably less than 5%, maybe much less than 5%, will wind up being in a state that we describe as a prolonged disorder of consciousness what’s called a vegetative state or a minimally conscious state. And it’s that tiny minority of patients that this module will be a lifeline for. So the first thing I think is to emphasise that the outcomes that were talking about here, and the pathways of treatment, and the resources, may not apply to the vast majority of patients, but they apply to that minority of patients who currently don’t have a roadmap, and they’re stuck in a desperate landscape from which they see no escape. The work that’s been done here I think is very important for patients and their families because it provides a voice from other people who’ve been through the same experience. It’s also important for clinicians like myself, and perhaps more importantly for clinicians at a later stage of patient management, because it allows us to hear those patients’ voices through their families, and the families’ voices, in a way that hasn’t been possible before this.