Family Experiences of Vegetative and Minimally Conscious States
What is the minimally conscious state?
A person who is ‘minimally conscious' shows some evidence of awareness of themselves or their environment. It is also sometimes referred to as a “low awareness state”. A person who is vegetative might smile spontaneously but a person who is minimally conscious might smile in response to her daughter entering the room. A person who is vegetative might grasp his wife’s hand reflexively, but a person who is minimally conscious could perhaps reach for the hand of someone they love. Some people with brain damage are blind, or deaf, or unable to move certain parts of their bodies, so what a minimally conscious person can do to demonstrate that they are aware of themselves and their environment will vary.
But if they can hear and understand, then they might be able to follow simple commands (“look towards the door”) and may be able to indicate ‘yes’ and ‘no’ in response to questions (e.g. by blinking if they have limited movement).
There will be times when they can do these things and times when they cannot – their consciousness is likely to fluctuate. The minimally conscious state is considered ‘permanent’ after five years, meaning that it is extremely unlikely that the person will ever become fully conscious again.
Before concluding that a patient is still vegetative and not minimally conscious, it is important to rule out the possibility that their consciousness is being suppressed by sedative medication or illness.
What is it like to be with someone emerging into minimal consciousness?
In the movies any sign of consciousness is greeted with joy by families at the bedside – and swiftly followed by the patient being able to say their first words, express love or reveal a long hidden secret.
In real life signs of consciousness come and go, and may be hard to interpret. If a patient has been in a coma for anything more than a few days or weeks any recovery is slow and uncertain, or the patient may never ‘recover’ beyond being able to have facial expression and occasional communication.
This aspect of being with a severely brain injured patient is very challenging.
Some people told us they sometimes hoped that their relatives would not regain consciousness because that would be worse for them. Vegetative patients are not aware of what is happening and so cannot suffer, but doctors all agree that the minimally conscious patient can feel pain and distress – and that was a real concern to some of the people who talked to us.
But now he’s not on any medication, he’s not even on paracetamol. He’s not on any seizure medication. There is no real marked increase in awareness. A little bit more wakeful possibly, but doesn’t, doesn’t see you, you know. Might look like he’s looking in your direction but there’s no connection there. The only time we saw something like that was the time he was off his meds for five days and he was crying. I was playing a song for him and he just started sobbing. And that continued – he would cry every now and again – it was his birthday I know in June and they – the staff did up his room with a birthday bow and everything, they adored him, you know. And he cried that day as well.
And though that’s heartbreaking to see [speaks tearfully] it was great that he was feeling something, or showing something. It was sad that it was something that made him cry, because he wasn’t a whingey… he’s a very man’s man. [Sobs] He’s my man. And – but now I’m grateful that he’s comfortable.
But then if he did blink or he did squeeze my hand, I don't know what I'd feel then because I'd be – I'd probably feel even worse then because, right, he can hear me and he can't get up. He can't talk back to me. So I don't know what's worse. I don't know whether it's worse being – being able to do, you know, like squeeze my hand or blink or – or look up or look down or whether it's just better him being as he is and not being aware of anything. Well I hope – I hope that he's not aware of anything, you know. I don't know what's worse.
So you hope he is completely vegetative?
Part of me does. But it would be lovely to actually sit there and have some kind of communication with him. But then you're left with – you're left there feeling then, right, he can't say what he wants to say and he can't – and he has feelings and he's aware, but he can't express that. Like – like I say, it's a mixed – it's mixed. It's very mixed. You don't know what's – what's better, do you?
What would you want from him if there was any awareness? What would be the good thing about that for you?
Just being able to have him back a little bit, just a little bit, just to – just to have his – you know, even if it was just, "Yes," or "No," that he could say, but that he could – that he could – that he'd know who I was then. I'd like to know that he still remembers who I am.
I don't know what – I don't know what I'd expect because I'd want it all back. I'd be greedy and I'd want the whole thing back. I wouldn't just want a little bit back. But, no, I don't know. Just – I just hope that he does know who I am when –– if he can hear me. And when I walk in and he can hear me – me talking or hear my daughter talking that he knows who we are, I hope – I hope that there's that at least.
National clinical guidelines produced by the Royal College of Physicians 2013 [see ‘Resources’] advise that friends and family members play a key role in assessing and diagnosing patients. They should be asked for their observations and experience of the patient. They should be encouraged to use video-recording to record any interactions with the patient, and can be helped to use structured tools like WHIM, CRS or SMART assessment (see p16 of the guidelines).
Features of responsivity for families and care staff to look for:
(From RCP Guidelines p. 23).
Last reviewed December 2017.
Last updated December 2017.
But if they can hear and understand, then they might be able to follow simple commands (“look towards the door”) and may be able to indicate ‘yes’ and ‘no’ in response to questions (e.g. by blinking if they have limited movement).
There will be times when they can do these things and times when they cannot – their consciousness is likely to fluctuate. The minimally conscious state is considered ‘permanent’ after five years, meaning that it is extremely unlikely that the person will ever become fully conscious again.
Before concluding that a patient is still vegetative and not minimally conscious, it is important to rule out the possibility that their consciousness is being suppressed by sedative medication or illness.
What is it like to be with someone emerging into minimal consciousness?
In the movies any sign of consciousness is greeted with joy by families at the bedside – and swiftly followed by the patient being able to say their first words, express love or reveal a long hidden secret.
In real life signs of consciousness come and go, and may be hard to interpret. If a patient has been in a coma for anything more than a few days or weeks any recovery is slow and uncertain, or the patient may never ‘recover’ beyond being able to have facial expression and occasional communication.
This aspect of being with a severely brain injured patient is very challenging.
Some people told us they sometimes hoped that their relatives would not regain consciousness because that would be worse for them. Vegetative patients are not aware of what is happening and so cannot suffer, but doctors all agree that the minimally conscious patient can feel pain and distress – and that was a real concern to some of the people who talked to us.
Angela’s husband looks towards her, but she does not feel he is really seeing her.
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Age at interview: 50
Sex: Female
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And though that’s heartbreaking to see [speaks tearfully] it was great that he was feeling something, or showing something. It was sad that it was something that made him cry, because he wasn’t a whingey… he’s a very man’s man. [Sobs] He’s my man. And – but now I’m grateful that he’s comfortable.
Mikaela worries that it might be worse if her father were able to feel, but also hopes he might be able to know when she is with him.
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Sex: Female
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So you hope he is completely vegetative?
Part of me does. But it would be lovely to actually sit there and have some kind of communication with him. But then you're left with – you're left there feeling then, right, he can't say what he wants to say and he can't – and he has feelings and he's aware, but he can't express that. Like – like I say, it's a mixed – it's mixed. It's very mixed. You don't know what's – what's better, do you?
What would you want from him if there was any awareness? What would be the good thing about that for you?
Just being able to have him back a little bit, just a little bit, just to – just to have his – you know, even if it was just, "Yes," or "No," that he could say, but that he could – that he could – that he'd know who I was then. I'd like to know that he still remembers who I am.
I don't know what – I don't know what I'd expect because I'd want it all back. I'd be greedy and I'd want the whole thing back. I wouldn't just want a little bit back. But, no, I don't know. Just – I just hope that he does know who I am when –– if he can hear me. And when I walk in and he can hear me – me talking or hear my daughter talking that he knows who we are, I hope – I hope that there's that at least.
Features of responsivity for families and care staff to look for:
- Do they discriminate between different people? E.g. show preferential interaction with family or certain members of staff.
- Do they make purposeful movements?
- Do they reach out for objects, or move appropriately in respond to command?
- Do they indicate yes/no? E.g. by gesture, eye-pointing blink etc.
- Do they show meaningful facial expressions? E.g. smile in response to a joke and cry/grimace in response to non-somatic stimuli appropriately (e.g. hearing bad news).
(From RCP Guidelines p. 23).
Last reviewed December 2017.
Last updated December 2017.
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