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Family Experiences of Vegetative and Minimally Conscious States

Treatment decisions in the Intensive Care Unit

Patients with serious brain injuries are usually rushed to the intensive care unit [ICU] where they may be placed on a ventilator and have other interventions to stabilise their condition and enable them to be assessed. At this stage it is sometimes hard to determine the level of their brain injuries – and clinicians usually recommend intervention unless the injuries are so severe that there is very little uncertainty about the outcome. 
 

David Menon explains how there can be a high level of uncertainty about the outcome for some patients in the early days. He emphasises the need to consider what outcome would be acceptable to the patient and what level of risk of this outcome they would c

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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 there’s 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, ‘we’ve got very sophisticated hospitals, we’ve 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 
Decisions to withhold or withdraw treatment precede the majority of all deaths in emergency departments and in intensive care. Clinicians are cautioned against ‘life-sustaining treatment by default’ and are bound both by law and medical ethics not to carry out life-sustaining but non-restorative treatments if these carry a substantial risk of an outcome that the patient would find unacceptably bad. 

This means that there are many cases of severe brain injury where doctors allow the person to die in the ICU. The families of these people do not experience having a relative in a vegetative or minimally conscious state (and they were not included in our research). 

Sometimes the crucial decision involved whether or not to give the patient a craniectomy (surgery on the skull) (for more see ‘Craniectomy’) or whether to resuscitate them or put them on a ventilator in the first place. 
 

Rifat’s father went into hospital with difficulties breathing – he then had a heart attack in hospital, but was resuscitated and put on life support

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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, we’ll be seeing what happens in seventy-two hours or so.”
In a few cases, those we spoke to said that life-prolonging treatment had been withdrawn from their relative but the patient had survived anyway. 
 

Morag remembers being told her father was ‘brain dead’. The doctors decided to turn off life support, but her father started breathing on his own.

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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, there’s just no way.” And they said “well, you’re not going to have to make that decision, we’re making the decision for you, you sit on the bed, we’re going to switch the machine off, his breathing will go shallow, he’ll 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, “he’s breathing.” “Oh no, no, no he’s definitely brain dead, he’s definitely brain dead, it’s – you know, this is just a glitch.” You know, “we’ll switch the machine back on for half an hour and then we’ll switch it back off again and, you know, same process again. His breathing will go shallow, he’ll 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, “he’s fighting, he is alive and he’s breathing by himself,” so it’s that hope that he might just open his eyes ‘cause we’ve 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.
 

The ventilator was taken off for Rifat’s father – but put back on after he managed to breathe for some time without it. Rifat’s family then asked for religious guidance.

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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 he’s 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 we’ll 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. 
In many other cases, people told us that there were suggestions from clinicians that treatment could be withheld or withdrawn – but it did not happen. Sometimes families protested that they wanted treatment to continue. Many families reacted like Emma insisting everything must be done to sustain their relative’s life: 

‘There was absolutely no thought about it – she has to live, this person has to live. … And it is the naive notion that you never know what would happen. Even though there was obviously nothing could happen, that she was never going to get better – but there was no question that you just do everything to keep that person’. 

Families often wanted the person to ‘have a chance’ and/or believed they were ‘a fighter’ who would defy the odds being suggested by the doctors and make a meaningful recovery. Bob said of his son (who eventually died while still in a vegetative state): ‘Most of us thought, "he’s strong, he can do it!" - if anyone could have done it, he could have done it’. Kate (whose husband was vegetative or possibly minimally conscious at the time of interview) commented: ‘You think, ‘well this is [name] – you don’t know him; he’s strong, he’s a fighter, he won’t let this stop him.’ Family members could simply not face the thought of losing the person or being involved in a decision to allow their death. 
 

Imogen was asked whether she wanted doctors to treat her husband (as if they needed her permission, which they did not). Although they explained the possible negative outcomes she just believed that he would be OK.

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And the doctor said to me, “Okay, he's 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 – “He's in a coma”, that's right, they said “he's 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, “He's just fallen over”. You know, “He's 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 someone's- You know, one minute they were saying “If they could treat him” and then, and then now they're saying, “We’ll 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. 
Looking back at this time some families were positive about the stance they had taken (for more see ‘Recovery’).
 

Doctors were ready to switch off the machines but his family resisted, believing that if God had wanted Theo to die, he would have. He has now recovered full consciousness and is cared for at home.

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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, he’ll 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, we’re not going to, you know.

Peter: And one day he’ll – I’m hoping one day he’ll prove everybody wrong and he’ll talk. And there’s a few people that are going to get a few lectures [laughs].

Andrew: No, he’ll, he’ll 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. We’ve had – I’ve got—

Olga: He’s 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, he’s a fighter. So he will fight. And I keep on telling him, and that gives him strength, that’s what I believe anyway.
 

When Verity’s teenage son was in intensive care all she wanted was for him to survive, but with hindsight, knowing what she now knows, she would have allowed him to die.

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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.
Reflecting on how things might have been handled better most families felt the emergency interventions had been appropriate. Some thought the doctors should have either given them more information to inform their decisions, or made a different decision regardless (including switching off machines in the face of their own protestations at the time).
 
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Sonia’s family wishes they had had more time to discuss the options and implications.

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Do you think the doctors could have approached it differently?

They could have asked us to come up to the hospital I think, that would have been much more appropriate. And say, you know, “We really need to have a talk with all of you about the most appropriate way forward.” I think that if I had been, a registrar, that would have been a more appropriate way to respond. Okay, it wasn’t visiting hours, but nonetheless you were being presented with a situation which is a life or death situation. 

I mean, you know, it was a – bizarre I have to say. And, you know, yeah. It just seemed very, very strange that they should, go about it in that way. But I presume that they then also had to find a theatre to operate in, to scrub up, to get the appropriate teams and so on and so forth together, I nonetheless think they could have asked us – we weren’t very far away from the hospital, so we – they could have said, “Is there any chance that you can come in, and we can talk about it face to face?” I don’t think we felt that we had an opportunity to ask questions. They wouldn’t answer the question about prognosis, you know, if you do operate, what’s the likely future? Well, certainly kind of in the Schumacher case it’s been very clear that people have been very, very clear and making very public statements about with this kind of massive brain injury the person that will recover from it will not be the person that was there before. That the extent of the damage is extreme. And I think if that, if that kind of thing had been laid out more clearly before us, I think we would have been bettered informed about the decision we made.

Did they also give you a sense of – so what sense did you get – if there’s life or death and we can make a decision to try and continue her life or not, did they give you a sense of the possible prognosis- what life might be like for her?

No, no, not at all. No. Because this was the question that my dad was asking I think in, in – you know, all we were told was, the pressure on the brain is extreme and she will die within the night if we do not operate. And when my father said, you know, “If this was your mother or wife what, what decision would you make? What would you advise?” He said, “I cannot answer that question.” And I think that was the moment we thought, “Well, they’re not- they are literally going to bounce it back all to us. There’s no sense in which they’re going to say, even based on clinical evidence, ‘it’s unlikely that she would recover to the functionality that she had before, this is the best case scenario, this is the worst case scenario”. So there was no sense of any parameters within which you could operate. 

And I think that was, massively unhelpful. Because I think even to say “the best scenario is not that your mum will make a full- you know, would make, a full recovery - it is that with a high level adaptation it might be possible for her to do x, y and z within a two or three year period, if she were not to have another stroke”. And then I think you would know that realistically that’s not going to happen. So what you’re looking at is a much less, you know, kind of positive outcome. And therefore you would have made a more informed decision.

And did they at any point say, “Well, there’s a ten percent chance of complete recovery, a seventy percent chance of...”

No, nothing. Absolutely nothing. No, no, I mean, that was the conversation. It really was, we must operate, or she’ll die. Do we have your permission to operate? 
 

David and Olivia wonder why the doctors ‘brought her back’.

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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.
We did not talk to people whose relative had regained full consciousness and had a ‘good’ recovery after treatment – which is what the clinicians will be aiming for. The families we spoke to remembered intensive care from the perspective of those who now know that their relative has survived, but with catastrophic brain injuries. 

For both families and clinicians hindsight can make a difference – a crystal ball would make decisions in ICU much easier – but choices often have to be made without the benefit of certainty. All people can do is try to take into account what the patient themselves would have wanted and consider their ‘best interests’ (including, for example, whether the patient would have rejected life-saving interventions given the range of possible outcomes or whether they would value the chance of life at any costs).

Medical ethics is clear. Doctors should not provide life-prolonging treatment when the person’s injuries are so bad that is not in the patient’s best interests to be kept alive. Many people are allowed to die every year in the ICU because doctors decide to withhold a ventilator, or not to do surgery. When doctors provide life-prolonging treatments in the ICU it should be because, weighing up what they know about the clinical situation and what family and friends can tell them the patient’s own values and beliefs, they believe that the person will recover to a quality of life that they would value. 

Surveys show that most people do not want to be kept alive in a vegetative or minimally conscious state. When someone is given life-prolonging treatment in the ICU only to survive, long-term, in a vegetative or minimally conscious state, this is often because something has gone wrong with the decision-making in those early days, but sometimes even with a good decision making process the outcome can be something nobody would have wanted. 
 

David Menon emphases that a bad outcome for the patient does not necessarily mean that any mistakes were made or that the wrong decisions were taken. Sometimes it is only possible to know that it would have been better to treat the patient differently wit

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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. 
The outcomes after severe brain injury are very difficult to predict and most ICU doctors know of one person among all the thousands who did recover, against all the odds. They are trained to save life and (like families) they may hope for a positive result, however unlikely. They may also be swayed by families who, as we have seen, rarely understand what the possible outcome could be and can be powerful advocates for keeping the patient alive even when doctors think otherwise. In an emergency situation these are hard decisions to make. The problem is that allowing death in the ICU – even when there is still some uncertainty about the likely outcome for the patient - can be straightforward (when a patient cannot breathe on their own for example). But allowing death months or years later can be much harder, both for the family and possibly for the patient too. 
 

David Menon explains the value of this website for the minority of families with a relative in ICU and reflects on its importance for clinicians.

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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 we’re 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. 


For more see ‘Decision-making: the legal situation and clinical practice’ and also ‘Family experience of decision-making’.

Last reviewed December 2017.
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