Family Experiences of Vegetative and Minimally Conscious States
Messages for healthcare professionals, service providers & policy makers
We asked everyone who spoke to us for this research what message they would like to give to healthcare professionals and service providers. Common themes included the need for better support for families and patients, clearer guidelines and processes, more information, better communication and better care and resources, alongside the need for wider social changes.
There were also some big differences in the messages families wanted to send to professionals. Some people felt very strongly that healthcare professionals had ‘written off’ their relative too early. Other people felt they had been allowed (or encouraged) to have ‘false hope’ and that this had been very damaging.
When we first met Peter and Olga they were determined to bring Peter’s brother, ‘Theo’ home, and they have achieved this, and he continues to make progress. Theo is now fully consciousness, and his family emphasise the importance of hope, and are critical of doctors who did not believe in potential to recover.
Do you have any message for the doctors?
Peter: The doctors? Well, the doctors don’t know what they’re talking about basically. Don't paint everybody in the same light, because everybody is different.
Olga: Some, some doctors, okay, they are sympathetic and all that. Because at the end of the day you don’t know, yeah, how the family feels, because it’s not your family. If it’s one of your family and then you see how you’re going to feel.
So what would a sympathetic doctor do or say?
Peter: To say, “Look...” the doctors say to you whatever you get in the first six months to two years, that’s what they say, don’t they? But that’s not true. Not – everybody’s different. Everybody is different and they should say, “There is hope.”
Olga: Yeah, but you know—
Peter: To give them hope, not doom and gloom.
Olga: Do you remember when—
Because it’s important to give hope?
Peter: Yeah, what, whatever God decides, if you use that term, at least if anything does happen to that person then you could say, “Well, that’s what God deemed.” And that way they don’t have it against you that they say doom and gloom all the time, do you know what I mean?
Olga: But, you know, at the end of the day the doctors are – they try their best.
Peter: Yeah, but they’re all covering each other’s backs, you know, they, they don’t want to give you hope.
By contrast, when we first met Fern she, like Peter and Olga, was determined her partner would progress – and was fighting to ensure his survival. Two years later, she now thinks he should have been allowed to die. She says: ‘how do you know what the journey’s going to be like at the beginning? You’ve got no idea – but they do have an idea, the doctors have an idea’. Although she does not want to ‘throw their compassion’ for her back in their faces (and understand why they responded to her pleas for more treatment) she says that doctors ‘need to know, you they can appreciate our suffering’ but ‘perhaps we’re not making insightful choices’. She now thinks the doctors should have over-ruled her: ‘I think it should be a team that comes together and makes a very clear decision… and there has to be something that’s put in place to say, “We’re doing this.” Her message to clinicians is: “if you’ve got a choice to do it differently next time, maybe you should.” (For more see Decision-making: the legal situation and clinical practice’ and ‘Family experiences of decision-making’).
He shouldn’t have been sustained after the second one. When he didn’t blink for a week and when he didn’t do anything again for the next year something should’ve been done.
And then the problem is, you have a very small time to act as a clinician, to whether you withdraw and stop the treatment. Because after that then you’re in a legal area where you can’t remove anything without a court order. So if you’ve got that time to act, then by god do it. Because after that we’re stuck with it, we’re on that journey for the next ten years, because then we’re in the murky court order phase and we can’t get the food and hydration withdrawn.
So if you’re going to act, if you’ve got that golden window to say, “This guy’s not – we would like to remove ventilation, we would like to remove hydration, we would like to stop active treatment.” Then get your boards together and start doing it. You know, I think they have so much compassion for the family, but they’re using it wrong. You know that compassion is saying, “You know, we care about you, you’re obviously distressed [whisper] we’re going to give him a bit more time.” It’s like saying, “Well if you can see quite clearly that he’s done, then you should stick to that.”
Well, I mean, I – equally I think it’s – I think it is about for them not being fearful of what the relatives are thinking. I – it – if there can be a way that it is for every relative that is in this terrible situation, that you can have a professional, a medical professional, that sits down and says, “This is this, this has happened. The result is not going to be good. This is your child, your mother, your father, your sister, your brother, this is bad. It’s going to be this if you progress this course of action.” And that’s a hard thing. But I think if – I think just talking really and being honest. And I think it’s accepting that people will not like what they want to hear, without any question, because no one wants to hear that. Because all you want is the best outcome. [Intake of breath] And I – you know, I guess it’s about being Bruce Lee frank actually. And I know it’s awful because you know that person doesn’t want to hear that, that person does not – that you’re talking to, does not want to hear that. But it’s then going away and that person to come back again and say, “Gosh...”
You know, and I think also, it’s, you know, the elephant in the room is your loved one. And that loved one has got to be Kate or Jane or Suzy, what would Suzy think, you know, including that person. Because one doesn’t because they can't. So it’s not a real message. I think I – you know, it’s really – it’s about honesty on both sides. One on the clear medical prognosis and for a relative, a clear prospect of that isn’t – this is the situation. And this is not going to be good, this is not going to be nice, it’s not going to be, you know, a happy ending.
Families emphasised the need for clear communication and clear pathways for people who have had catastrophic brain injuries. Some stressed how valuable it would be if clinicians took sometime took clearer responsibility for the decisions that are there’s in law, and many wanted policy makers to become more informed about the issues on the ground. A common suggestion for law-makers, for example, was ‘come and see the patients, come and see the families’. Several families who felt their relative would not have wanted to be kept alive long term in a vegetative or minimally conscious state also highlighted that they would like to see wider social change in attitudes towards death and dying.
It doesn't. I don't know. I don't understand it. I don't understand it. And before this happened to him, I never thought about it. I didn't even know that you could – you could be like that and still alive. I didn't – I didn't even know that. So why – why would you want to make that even longer? Why? Doesn't make sense to me and it makes me – it just makes me mad that people are – if they came, if these individual people came, the people that made this decision came and saw these people in their situation like this, I'm sure that they'd – they'd be thinking differently about it. This doesn't make sense.
So as a message, what would your message be to the law, to judges?
Just to go and have a look for themselves. Go and have a look themselves. Go and speak to families and see what they're going through.
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.
If there was one message you wanted to give out to policy makers or law makers – what would that message be?
Oh, my goodness. I think it would be this. The world’s changing and medical science is changing. A hundred and fifty years ago it was considered ethically unsound to give a woman an anaesthetic in childbirth, but we’ve moved on. Fifty years ago, if someone was dying it was considered ethically unsound to tell them, we’ve moved on. And we’ve moved on again. To live in a permanent vegetative state is no life for the patient and it’s no life for the family. And I do think that as a civilised society we do need to be able to offer families alternative solutions to watching a loved one suffer without hope, year in and year out. As an educated and civilised society we deserve to do better than that for our people.
Last reviewed December 2017.
There were also some big differences in the messages families wanted to send to professionals. Some people felt very strongly that healthcare professionals had ‘written off’ their relative too early. Other people felt they had been allowed (or encouraged) to have ‘false hope’ and that this had been very damaging.
When we first met Peter and Olga they were determined to bring Peter’s brother, ‘Theo’ home, and they have achieved this, and he continues to make progress. Theo is now fully consciousness, and his family emphasise the importance of hope, and are critical of doctors who did not believe in potential to recover.
Peter and Olga would like doctors to recognise that everyone is different and to allow hope.
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Peter: The doctors? Well, the doctors don’t know what they’re talking about basically. Don't paint everybody in the same light, because everybody is different.
Olga: Some, some doctors, okay, they are sympathetic and all that. Because at the end of the day you don’t know, yeah, how the family feels, because it’s not your family. If it’s one of your family and then you see how you’re going to feel.
So what would a sympathetic doctor do or say?
Peter: To say, “Look...” the doctors say to you whatever you get in the first six months to two years, that’s what they say, don’t they? But that’s not true. Not – everybody’s different. Everybody is different and they should say, “There is hope.”
Olga: Yeah, but you know—
Peter: To give them hope, not doom and gloom.
Olga: Do you remember when—
Because it’s important to give hope?
Peter: Yeah, what, whatever God decides, if you use that term, at least if anything does happen to that person then you could say, “Well, that’s what God deemed.” And that way they don’t have it against you that they say doom and gloom all the time, do you know what I mean?
Olga: But, you know, at the end of the day the doctors are – they try their best.
Peter: Yeah, but they’re all covering each other’s backs, you know, they, they don’t want to give you hope.
Fern talks about the ‘window of opportunity that clinicians may need to take.
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And then the problem is, you have a very small time to act as a clinician, to whether you withdraw and stop the treatment. Because after that then you’re in a legal area where you can’t remove anything without a court order. So if you’ve got that time to act, then by god do it. Because after that we’re stuck with it, we’re on that journey for the next ten years, because then we’re in the murky court order phase and we can’t get the food and hydration withdrawn.
So if you’re going to act, if you’ve got that golden window to say, “This guy’s not – we would like to remove ventilation, we would like to remove hydration, we would like to stop active treatment.” Then get your boards together and start doing it. You know, I think they have so much compassion for the family, but they’re using it wrong. You know that compassion is saying, “You know, we care about you, you’re obviously distressed [whisper] we’re going to give him a bit more time.” It’s like saying, “Well if you can see quite clearly that he’s done, then you should stick to that.”
Emma says it is important to try to make sure that the patient’s voice is heard.
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You know, and I think also, it’s, you know, the elephant in the room is your loved one. And that loved one has got to be Kate or Jane or Suzy, what would Suzy think, you know, including that person. Because one doesn’t because they can't. So it’s not a real message. I think I – you know, it’s really – it’s about honesty on both sides. One on the clear medical prognosis and for a relative, a clear prospect of that isn’t – this is the situation. And this is not going to be good, this is not going to be nice, it’s not going to be, you know, a happy ending.
Mikalea suggests that policy makers should see for themselves what patients and families are going through.
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So as a message, what would your message be to the law, to judges?
Just to go and have a look for themselves. Go and have a look themselves. Go and speak to families and see what they're going through.
Cathy thinks the professionals involved, and politicians, need to confront the problems created by modern medicine’s ability to prolong life.
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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.
Helen would like to see a wide spread changes in policies and social attitudes.
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Oh, my goodness. I think it would be this. The world’s changing and medical science is changing. A hundred and fifty years ago it was considered ethically unsound to give a woman an anaesthetic in childbirth, but we’ve moved on. Fifty years ago, if someone was dying it was considered ethically unsound to tell them, we’ve moved on. And we’ve moved on again. To live in a permanent vegetative state is no life for the patient and it’s no life for the family. And I do think that as a civilised society we do need to be able to offer families alternative solutions to watching a loved one suffer without hope, year in and year out. As an educated and civilised society we deserve to do better than that for our people.
Last reviewed December 2017.
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