Family Experiences of Vegetative and Minimally Conscious States

The injury

Serious brain injuries come without any warning to people who are completely healthy and can affect anyone of any age. Even years later the families we spoke with had vivid memories of the shock of the incident and the actions of police and emergency services.

Some people who spoke to us had relatives who were injured by a fall (e.g. while horse-riding or skiing), an assault (e.g. a punch to the head) or a road traffic incident. Verity and Helen both have teenage sons injured in car crashes. Other relatives were hit by motor vehicles when they were walking or cycling. Another was involved in a motorbike accident.

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’.

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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].

Imogen’s husband was hit by a car as he helped friends reverse out of their driveway while Imogen stood watching.

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The accident took place on - well, he was hit by a car basically. And the accident took place in a quiet country lane in where we have a cottage we'd renovated 20 years earlier, a family cottage. And we'd had some guests to stay- No, we'd had some guests for lunch. He waved the car out of- He walked across the road to wave the car out from the- where the guests were, and I was waiting in the drive. And they backed their car out and then moved it forward and stopped. While he walked towards the car, three more cars came along the road - I was standing in the drive- and then a car came from the other direction, and before he reached me the car hit him and he landed on the floor. And I just ran up to him and I just thought he'd fallen down. And he didn’t move, he just rocked his head. It turned out one of the other cars was a police car so they quickly backed their car up and rang for an ambulance, which I didn’t even know was going on. And I was just saying, “just automatically saying, “squeeze my hand, squeeze my hand” … His eyes were open and he squeezed my hand. And then one of the policemen said, “You'd better go and get him something to put under his head”. So I went into the house and started running- And they said, “We've rung for an ambulance.” And I was now just in shock I suppose. I was running around getting the clothes, ran indoors, switched off the lights. It was a summer's evening, a beautiful evening, so I just quickly grabbed a load of stuff and came running out. At that point an ambulance had arrived and they put him in the ambulance. So I got in the ambulance as well and rushed off, we rushed off to Hospital.

Shona was on a motorbike with her husband when they had an accident. She had to deal with what was happening to him, as well as coping with her own injuries.

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I’ve been with my partner since I was eighteen. And when I was thirty six, with a ten year old son, we were involved in a major motorbike accident - me as pillion passenger. The issues that I found - and find now - are the struggle which - I know some aren’t relevant to you - but the issues that to me still are very galling is that … it took them fifty minutes to get me an ambulance. And I was sat there saying “it’s a head injury. He’s thrashing. I want rapid response.” And I actually had a woman on the phone who was - she thought - talking to a bystander who was with me, but I’d put the speaker on- put the phone on speaker – and she said “don’t tell her but there’s no ambulances available”. And we didn’t get to ICU and we didn’t get sedated for an hour and forty minutes.

And you were injured too, obviously. What kind of injuries did you have?

I had really to be truthful in respect because I hit the ground running and he was so bad, I took no notice - as I think a female who has kids tends to do as well. Because you put yourself last. So those are what my issues are now. Because a lot of the other issues I’ve put to bed. But I’ve got my trauma coming back to haunt me. Uhm, which is a bizarre thing.

Some family members were at the scene at the moment of the accident, or soon after; others heard the news when police came to the door or telephoned them.

Mark received a phone call telling him his brother had been knocked off his bicycle by a car.

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Mark: What happened? Well, 10th of March 2011 and I had a phone call at work, I work up at – on the North West – from the police to say that, my brother had been involved – well, that somebody had been involved in a road traffic accident and my phone number was in his mobile phone. He’d got no identification on him or anything; he was just out on a bicycle. He was very badly ill; they were taking him by air ambulance to a central London hospital, and, did I know him, would I – was I likely to know him, from the phone number, because they used his phone to phone me. So I said, “Yeah, it’s my brother.” And he said, “Well, you need to get down to see him as – well, you need to get to see him as soon as you can, because he’s very, very, very ill.” I then said, “Well, I’m up on [location]” and the accident was in [place name], and he was heading for as I say a hospital in the City, in actual fact. And so I said, “Well, it will take me five, six hours maybe this time of night to...” it was right at the rush hour, five o’clock [laughs]. So I rung, my partner then who’s my wife now, and said, “I need to go down.” She put some things in a bag when I came back from work to pick the car up because I wasn’t, – didn’t have the car with me. And she decided to come with me, which I’m very grateful for with hindsight. Because I thought we’d be there a couple of days probably, and then we’d be deciding what to do next, and he might have to come back and recuperate and all – kind of the enormity of the thing really – because we had not seen him and that was all we knew at that point, hadn’t really kind of—

Helen: Yeah, I packed a bag including his funeral suit. Because that’s what we thought was going to happen.

Mark: Yeah. For the police had said he—

Helen: It was a possibility.

Mark: He’s not in a good state at all and not – didn’t think he was likely to survive to be honest. And so we drove down, got to the hospital at about one o’clock in the morning, I suppose?

Helen: Late, yeah. Dreadful weather.

Mark: And they were waiting to see us.
And they explained that they’d already had to do an operation on [Name] head, take one side of his skull out, to relieve the pressure. , but he was still in quite a bad way. He’d broken a lot of bones, and had – and… was in intensive care. Explained a bit about it that it was, it was a life threatening thing, that he was alive at that time but they weren’t sure he would make it through the night really, were they?

Helen: No.

Mark: and then took us in to see him. And… he – well, he was just lying there with one side of his head missing really. I’m glad they did it, they did explain that first.

Helen: They did warn us, prepare us for that. But it was still quite shocking.

Mark: Yeah, but it was a shock. So we went in to see him and I couldn’t believe somebody could survive what he had – had happened to him.

Other interviewees had relatives with brain injuries resulting from cardiac arrests, strokes or illnesses. These are sometimes referred to as ‘non-traumatic’ brain injuries. Morag received a phone call from her father who was on his way home for her sixteenth birthday, but he never arrived because he had a cardiac arrest. Phil’s partner, Lewis, mentioned a headache at 7 pm, and when Phil returned at midnight he found him collapsed on the floor thrashing, with foam coming out of his mouth.

David’s mother collapsed with a stroke, which was to leave her in a vegetative state until her death several years later. The last time he was able to interact with his mother was just before she was put into an induced coma.

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And they were sat out the back garden, just a normal day, planning to go out for lunch I think. Mum was sat in a chair, said she’d felt a little bit off when she came round. And then [mother’s name], my sister just looked – said something to her and noticed the side of the face had gone. She tried to talk to her but she just talked a bit – quite gibberish really, nothing made sense. So [sister’s name] immediately said to my dad who was there, “We need to go to hospital, quick.” So they bundled her in the car, quick as they could. Got to hospital. I was called while they were on route. Got to the hospital car park, frantically looking for my dad’s car, found him, ran into the hospital and sort of made them aware that she was in the car and she needed quick assistance. And they came from the hospital straight out to us. My dad and myself lifted her out of the car, got her into a chair. And she went straight in. We tried to give details but we were just so confused and concerned. And basically then myself and my dad waited for her – well, waited for someone to come to us, which they did eventually within half an hour or so. And they said, “You better come in, because we’re going to have to put her to sleep basically.”

Jim’s wife had viral encephalitis and deteriorated rapidly over a few days in hospital.

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The Tuesday morning I took her to a routine visit to the doctors, follow up to this Bell's Palsy, he took one look at her, he did a couple of simple tests on her and immediately rang the hospital and said, I want Mrs [Surname] admitted to hospital. And she had got up that morning, we had breakfast together, she got in the car, I took her to the surgery. She came out of the surgery, I put her in the car, I took her to the hospital. She walked – okay, she had a walking stick, only for safety more than anything, but she was fully compus mentis, she was talking.

Her speech was breaking up from time to time and she was having trouble swallowing. And she was eating the food but she wasn’t swallowing or taking it to such an extent that the next stage they were going to put her on pureed food. And she did – the mobility problems got worse and again, typical, she was in a four-bedded unit and she was in the bed here, and diagonally across the room was the toilet. And one day she wanted to go to the toilet, and rang the bell, the nurses came, got the Zimmer frame. She had problems getting out of the chair. Because every day she was still getting out of bed, getting dressed in her day clothes. But this particular day, she wanted to go to the toilet while me and another friend were there. And she had trouble getting up out of the chair to hold the Zimmer frame. And she had trouble walking sort of diagonally. The Zimmer frame was going that way, but she was looking this way, as though lack of coordination, if I put it that way. I mean, the two nurses were with her and guiding her, Amber, you need so and so… So – and I say, so in a short space of time she went from being fit and well and having all her faculties, and then they started deteriorating. As I say, speech started breaking up, swallowing was a problem, then mobility got worse and then it just went on from there. And then as I say, she had ten days in [hospital] and then we got the phone call that she was being transferred to [other hospital]. When I went to see her in [other hospital], I found that she was in the intensive care unit. And she was in there for about ten days. And then she got transferred to the neurological ward.

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, injuries resulted from surgery that went wrong, resulting in a lack of oxygen to the brain. Tania’s son was left in a vegetative state after brain surgery, Hannah’s relative never regained consciousness after an operation to remove cancer tumours and a similar thing happened to Angela’s husband.

Angela’s husband went into hospital for elective surgery – but something went wrong.

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Age at interview: 50

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My husband went in for surgery on the fourth of October, 2011 for Barrett's oesophagus and had a large section of his oesophagus removed and part of his stomach – about half of his oesophagus and part of his stomach. And part of that operation is deflating the lung. And so we knew there was a chance of a lung problem later. But the next day, about twenty hours after the operation, apparently what we were told later was that his lungs filled up rapidly with mucus and cut off the oxygen to his heart causing a cardiac arrest, which in turn caused severe hypoxic brain injury. Uniform brain injury, very much all over his brain. But we didn’t know all of this at the time.

We were told he was going to be in ICU and they were going to try and establish what happened – first of all they didn’t know if it was a clot or a heart attack, which apparently is different from a cardiac arrest. Or if it was something else. And they were going to put him into a medically induced coma and try and get an MRI organised at some point over the next I think five, six days they were hoping to do that.

In these cases the patients were warned of risks and signed consent forms, but were not invited to discuss what their wishes would be if they survived with catastrophic brain injuries. Hannah’s relative was so concerned about the risks that he wrote a letter detailing what he would want if he survived the operation but lost the ability to make his own decisions. However, he was given no guidance about how to record his wishes so they would be legally binding. For example, his letter did not include a signature from someone who witnessed his own signature – and this meant it was not a legally binding Advance Decision and did not determine his treatment when he was left in a vegetative state after the operation (for more information on this see ‘Reflections on own end of life wishes’).

Some of those we spoke to made policy suggestions. For example, Hannah suggested that people going in for surgery should be supported to write down their wishes in an ‘Advance Decision’ so that they could ensure that if anything went wrong, their treatment wishes would be respected. This could have saved a lot of heartache.

The way in which their relatives acquired their injuries– and the implications of such injuries – also impacts on how families react to subsequent events. People with severe acquired brain injuries have some things in common with other brain injured people – such as those with severe Alzheimer’s or children deprived of oxygen at birth. However, there are some crucial differences:

unlike the person with an early dementia diagnosis, for whom the illness develops gradually over time, the brain injury from a car crash or a heart attack happens in an instant with no time to plan in advance, or to adjust to changing circumstances. The suddenness of the injury was a key theme in people’s stories both about the original incident and events that followed.
unlike the new born baby with brain injury, the individual with acquired brain injury has already developed wishes, values and beliefs and may have expressed views about what they would want in this situation. Families’ knowledge of the person before they were injured and their understanding of what the person would have wanted is a key factor influencing how they feel about what happens later (for more see section ‘On-going decisions’).

Last reviewed December 2017.
Last updated December 2017.