Family Experiences of Vegetative and Minimally Conscious States

Bereavement after severe brain injury

Families of people in vegetative or minimally conscious states often feel they ‘lost’ their relative a long time before the actual death - families of people with advanced dementia sometimes feel the same way. Until the final (‘real’) death they are in limbo: the person is neither fully with them any more, but neither are they physically gone (for more see ‘Grief, mourning and being in limbo’). The person’s death may be feared: death means that all hope for their recovery is lost. Or it may be wished-for as a ‘release’, finally allowing a peaceful end to the body of a person whose ‘spirit’ or ‘soul’ has already left. Either way, losing someone who has been in a vegetative or minimally conscious state for a long time can feel quite different from either a sudden bereavement, or a loss after a long illness in which someone has been conscious until the end.

One mother shared her diary entries for the days around her son’s death, eight years after his accident where she wrote about longing for a feeling of “The end” and hoping for a feeling of bereavement.

Some people said they felt a mixture of fear (at finally losing the person) and hope (that the person is released). Some of the bereaved were taken by surprise at how they felt. Daisy thought she had done her grieving years before and was hoping her brother would die. When he did: ‘although it was wonderful that his soul was free and that he was free and we knew that this was the best thing for him, it was a huge loss for us’. She found she was grieving the loss of the minimally conscious man she had looked after for so many years as well the strong, intelligent man he had been before his accident. Memories flooded back - filling her with raw grief. Other people we interviewed felt only relief or calmness – focusing on the fact that the person they loved was now at peace.

The death of his wife, Amber, several months after her injury was a relief for Jim, even though he had never given up hope.

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So when she died, was that – I mean, in one sense you knew she didn’t want to be kept alive if she had to be resuscitated. On the other hand, you hadn’t given up hope that she might recover?

Yes.

So you must have felt conflicted?

I was. Until I was told she'd passed away. I'll be quite frank. It was a relief. Because I had – I had doubts that even if Amber had survived, if she couldn’t recover – or if she didn’t recover 90% plus, I don’t think she would have been a happy bunny. She was such a vibrant character that I don’t think she would have been happy. And as I say, when I got the phone call to say that she'd passed away, it was a relief.

Right there and then?

Yes.

Despite the fact you hadn’t given up hope?

Yes. I hadn’t given up hope until that second. Although I had reservations as to what quality of life – and it's her life, not my life.

So you would never have – you mentioned earlier the court cases that people have taken to get treatment withdrawn –

Yes.

You wouldn’t have started that yourself, because you hadn’t given up hope?

No.

So you wouldn’t have tried to withdraw treatment?

No.

But a natural death, out of your hands, was a relief?

Yes. It's a very delicate balance. Between okay, did if you like – I mean, don’t get me wrong, I know – we knew what we wanted as a quality of life, and it was safe to say that with Amber laid there like she was, that wasn’t the quality of life she expected. But by the same token, because Amber couldn’t communicate in any shape or form, I never gave up hope because of our past experience of Bernard and Janet. They were two people who were written off. Whether it be right or wrong, I thought they were in a worse state than Amber ever was, because Amber wasn’t on a life support machine. Now that – the interpretation of that might be wrong in that fact that Amber was on permanent oxygen supply and the only method of feeding and administrating medication was through the PEG. But when you've seen or know of two people who were written off for several months and then you see them like they are today, you keep faith.

Yeah, I can see that.

So I never gave – and my friends never gave up hope that Amber would survive. Although we didn’t know to what extent, and whether Amber would have been happy to make the most of her life in that diminished state, who knows?

So the decision was taken out of your hands, she died?

Yes.

And that was the relief?

And it was a relief.

Did you feel guilty about feeling a relief?

No. Because although there were signs of improvement I knew that it would be a very long process for Amber to recover any one of the things she lost to near normality. And there was always this question that Amber was such a vibrant person, would she be happy say living – being alive and only having 75% of her faculties. From the discussions we had, I don’t think she would have been. But by the same token, as we know from these two people which as I say we know in detail, they are enjoying their quality of life. Although they have these disabilities and restrictions and come what have you, but they're enjoying – they're living with it.

Gunars felt he had lost his sister several years before she was finally allowed to die.

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Gunars felt he had lost his sister several years before she was finally allowed to die.

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Gunars: And I didn’t really feel it necessary to be at the end, because fundamentally I lost my sister, four and a half years ago, on the day that she had that stroke. And when she didn’t recover within six weeks, and being a pragmatist, and I just accepted that, she’d- she was gone. So, while I went through this process I was also- it was also a grieving thing. And the grieving thing then actually, becomes reality when you’ve actually achieved the end result of- of ending her life, in the most compassionate and dignified way that was possible. And I can honestly say, as I sit here, with you, that, we managed to do that. And there is a peace and calm inside now that wasn’t …

Gunars: It’s not much- when the end has come and the forma- the formalities of the funeral have taken place, there is relief in that we’ve actually achieved the objectives that we set out with, six months on, it doesn’t hurt as much. It’s still there. And the only thing that, I personally am determined to do is make sure that, though this video, through all the other media that we’ve got, is to, make sure that that information’s accessible, as it was in my case, that newspaper article, American medical information which then sort of kick-started a process. And if nothing else, by watching this video, that process, takes place, then a lot of people may have a lot more calmness about the, because they know they’re actually doing something about something that they thought was impossible to do anything about, but, something can be done about it.

And the more people that actually address the issues, there’s more likelihood that the law might challenged. And instead of starving, somebody to death, that we might be able to do it in a more humane way, like we do in lots of other situations, whether our, pets or, as I said before, an American convict on death row certainly has a reasonably quick end to his life, half an hour instead, nine days.

Margaret: I think in the aftermath of, the death, it was whatever differences there had been in the final few months, we were all together, at the funeral. And that was, for me, a very nice closing off of what we’d been through.

David and Olivia did their grieving over the five years before the final death.

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David: I think yeah, actually because I think when it happened, when she went into hospital and I pulled her out of the car and then she was going into a fit, somehow I knew, whether it’s super son sense or whatever, I knew she wasn’t coming back. And I cried and cried and cried then. I was so upset, I couldn’t hold myself. But then when she died in her bed, I just kissed her and told her it was all right. And I cried. But – and it catches you now and again, but I don’t – I definitely don’t like – you know, I didn’t grieve her heavily. I think I grieved her through the five years, through seeing her in that bed, day in, day out. And I’d sort of said my goodbyes then through all that time, so – but, yeah, it’s definitely different, it’s definitely different. But it was – like I say, it was more of a – rather than a – the grief I’ve had before from grandparents has been a bit of a shock. Oh, they’ve gone. But I got to see mum in a way going, and gone [laughs]. You know, right to the very end.

So, like I say, I wasn’t – you know, I was sad but I wasn’t unhappy, you know, when, when she passed. I think it was, it was right, it felt – everything felt right. And it was finally over for her, you know, she could just be peaceful. But none of our family are religious, so nothing like that came into it. But I always think – my grandma passed away quite a while ago so I always think, you know, they’ll be off having a glass of wine or a coffee or – you know, that’s the way I think. When someone goes they go and see the person that they [laughs] you know. So I sort of just –I just used to think that and then think of the happy times, you know, that I’d spent with my mum. So yeah. But it was never really a sad, sad thing.

Olivia: And I sometimes wonder if that’s why our hospital experience was so terrible, because actually we were grieving then.

David: Yeah. But no one could really understand it and we couldn’t because we didn’t have time.

Olivia: She was still there.

David: Yeah.

Sometimes people had spent so much time caring for their relative they did not know what to do after they died. Others were grateful to be able to move on with their lives.

Cathy was shocked by the intensity of her grief at her brother’s funeral. She had been so focused on her brother that, after his death, she was left not knowing what to do.

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I remember thinking the vicar was doing a good job because what on earth do you find to say about someone in that situation? Because he was sort of telling stories about Matty, that it’s the – you know, what you – Matthew hadn’t demonstrated any of his personality for eight years. So it’s that gap, isn’t it?

But he did a very good job, he was very kind. It was sunny. I don’t know the date of either Matthew’s death or funeral because I decided not to – I purposefully tried to avoid committing them to memory because I can’t escape from the date of his accident and from his birthday [cries] and I didn’t want to accumulate other days in which to feel just, you know, worse. But I didn’t know – I had thought I would feel relief at his funeral and I didn’t. I just was overwhelmed with this avalanche of grief, that I wasn’t expecting [cries] because I really did think I’d grieved. I really did think I’d grieved. And I didn’t think how – I think as well, I had felt – I felt I had a mission, you know.

So after Matty’s accident, I had a mission to make him better and then that didn’t work, but then we knew we had to do this, so that itself was a task I had to achieve for him, and then kind of when it was done, I just don’t think I knew what I was supposed to do with myself. And I think I’d thought – I’d expected that I would feel some kind of relief and I didn’t. I felt relieved for Matthew that he wasn’t alive anymore, for him. But I didn’t feel any – any relief for me at all.

When Morag’s father died, her mother – who had devoted nine years to caring for him - lost her whole ‘reason for being’.

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You can never prepare yourself because when somebody’s been in PVS for such a long time, your whole life changes, your whole routine changes and for my mum, she didn’t just lose her husband and the father of her children. She also lost her routine and her job and it was like losing a child because she cared for him physically like you would a child. It was physically, you know, washing his hair, combing him, making sure he was shaved, you know, taking his pyjamas, washing them, in the same as you’d look after a baby. So she lost her husband, her job, her reason for being, her child, she lost everything overnight, you know, which was even more difficult than for us.

Emma was pleased to be able to organise a lovely funeral for her mother, and then felt her own life could start again.

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The funeral, that was – it was – the funeral was just an addition. I – because I’d said my goodbyes it was – I felt that that’s what she would have wanted. And, and I suppose for everybody, her sister, you know, my children, me, it was what is needed as that finality, that – literally that full stop. That celebration of that life. And – which we did. We didn’t talk about the last three years. People spoke about her being this person here and that’s – and that was – yes, the funeral was a lovely funeral actually. And we went back with a group of us and had a big lunch which I knew she would have liked. And I have, I have goodness comes from that. I wasn’t really sad. It was just, I want to do this, she would have wanted this, so I must have this. It is important, she will want this here, she will want someone to read this, she will want people to wear black, she will want people to have formality. She will want this blooming reading, she’ll want this [laughs] blinking hymn, [laughs] you know, I knew exactly what she would want, and the formality and the structure of it. And she had that. And, and it was, it was a celebration of her life. The readings were beautiful and about her and fantastic, positive. And it was good. It was good. I wouldn’t go so far as to say it was a knees up, but we had a jolly good lunch after. And, you know, it was, you know, Kate, you old bag, but it was – that was – and the process, it was the process. And that was that. And the day after my life started sort of again.

Families often feel that their loved one has had ‘two deaths’ – the one that happened at the moment of injury, and the one that happened much later when they were finally ‘at peace’

Helen told us about the choice of gravestone for her son and the importance to being able to remember her son with happiness.

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And I was very moved by the gravestone you’d chosen for him, you showed a picture?

Oh yes.

Can you tell me a bit about the choice of that – those, that wording?

Okay. For most people when they die on their epitaph you have when they were born and when they die. There’s no question, those are immovable. But for Christopher it was different. He was born on the seventh of September. He lost his life on the thirtieth of April. And he was finally at peace on the twenty-first of December. An awful lot of people don’t have that interregnum between the loss of life and being at peace. But he did. And it struck me important that they were each marked.

So there were many years between when he lost his life and when he was at peace?

Yes. But he is at peace now. Which makes it possible for us to take a deep breath and move on. And that perhaps is the biggest gift that he left for us. That we knew that he would want us to recover and remember him with happiness and remember the good times, and not to have our life overshadowed by on-going infections, hospital visits, problems with splints and everything else. But that we should actually get our own proper normal lives back to a degree.

The families who talked to us often reflected on how they might be able to mark their loved one’s ‘final departure’. One woman talked about her mother’s on-going existence over fifteen years after suffering catastrophic brain injuries. She said:

“I fantasise about her funeral basically being able to be united and to celebrate her and you know remember her… we’re stuck. We’re all pressing against this glass wall. And when she dies... although it’s been so long, you kind of imagine it’s all going to be okay when she dies.”

Another said that she would not want anyone to wear black at her son’s funeral because: ‘it’s probably a celebration that he’s finally been released.’ And Ann and Bea discussed how they had wanted a little time to say good-bye to Fiona and plan her funeral in the week after her accident - plans which remain on hold as Fiona is still alive (in a vegetative state) many years later.

Bea: “I was really pleased that I’d had the chance to do that, she’d be really pleased with the decisions made for her funeral... planning a really nice do, and choosing the music was a decision of something that I could be proud of planning for her’.
Ann: ‘I was thinking, oh yeah, a month would be nice because, you know, we've had a chance to say goodbye to [Fiona], you know. And obviously, at that point, we didn't feel there was anything else we were going to be able to do for her.”

For those who had experienced a death, the funeral could be an important ritual celebrating the person as they would have wanted to be remembered.

Morag describes being part of a tightly-knit local community and the support at the funeral from the police force her father had been part of.

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But I used to thoroughly enjoy going to the police station when I was little. It was a tiny little police station with one cell, and I used to love going and sitting in the police car and putting the sirens on and – so just, you know – and always just had so many friends, so many friends. And I think, I’m sure we’ll come onto it later, but a testament to the kind of man he was, that he’d been in a coma for nearly nine years before he died and he had a full police funeral. And there were traffic cones up the street and there was no room in the crematorium for people, it was standing room only, and people were stood outside. And to think that somebody who’d been out of society for such a long time, that’s…

Everyone remembered and knew him and –

And everyone had a story to tell about him. And he had a wicked sense of humour as well, a real wicked sense of humour, and everybody had a story about, you know, when they’d got drunk with him or when he’d played a trick on him or something or other. Apparently, I think that’s where I get my wickedness from.

David’s mother was given a great ‘send off’ at her funeral.

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David: Yeah, so – well, basically her body was just up the road here for – in the Chapel of Rest for two days.

Olivia: We bought her the smartest outfit from Per Una.

David: From – yeah, yeah, she looked really good. And then, yeah, she was taken to the crematorium, brief, non religious service, and then my dad up on guitar singing Irish Rover, Country Roads and Streets of London, [laughs] with a massive round of applause. And then she had her wake at the club that she used to work at. So that was quite fitting. And then back to the family home for I wouldn’t say a knees up but a drink, a laugh, a cry and yeah, a good sendoff I think, what she wanted. Well, one thing we knew she did want was a quick hearse to the crematorium. She said, “No creeping, just go at speed.” [Laughter] So we did, we did that. Yeah, and it was a good send off, wasn’t it?

Olivia: Yeah, it felt like her.

David: Fitting, very fitting.

Olivia: Yeah, a celebration.

David: My dad – to my dad – for my dad to sing rather than to make a speech or a, you know, a speech of her life. But basically the music told it all. If anyone knew mum and dad and singing, happiness was what she wanted.

Had you been planning the funeral for a while?

David: No, no, no. We only had less than a week. So we got everything prepared, flowers, etcetera, and then dad said he’d prefer to sing than speak. He probably couldn’t be able to get through it, so he sung. And there wasn’t a dry eye in the house, was there?

Olivia: No.

David: [Laughs] It was brilliant [Laughs].

Olivia: Everyone was joining in singing and clapping.

David: Everyone knew the songs, yeah. So—

Olivia: And the undertaker said he’d never been to a funeral quite like it.

David: [Laughs] so yeah, a good send off for sure.

Her son’s funeral was a lovely occasion, and Helen had the strong sense that her son was there with her.

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His funeral was lovely. We used to live in a rather beautiful village and the old Norman Church was literally just over the road from our house. And the vicar very kindly allowed us, even though we no longer lived in the parish, to have his funeral there and for him to be buried in the churchyard. My father was a church organist. He can't see anymore and arthritis has completely written off his fingers, but he got the music out because he said that he wasn’t going to let anybody else play for his boy’s funeral. And the country had been gridlocked by snow but people made it from Cornwall, they made it from the Lake District, they made it from Yorkshire. And we’d ordered him a wicker coffin. And the night before his funeral my mother and I went to the chapel of rest with a big, big basketful of Christmas greenery, holly, ivy, bay, Christmas roses, all sorts of things. And the funeral director brought us a large pot of tea and we had the lid off the coffin and we literally wove these Christmas greens through his, through his coffin, so that it was covered in flowers and greenery the following morning as it went into church. And we had his favourite music and we had his favourite readings. And he went out of church to a piece by Andrew Lloyd Weber from his, musical ‘Starlight Express’. And the words to that were, ‘if only you use the power within you, you can stop the rain and turn the tide.’ And that was just so much his attitude to life. And we stood in the snow, at his graveside and we all threw in a red rose for him, because his house flower at school was the red rose, he had to wear one on his lapel every speech day.

And then we went to the nearest hotel and everybody took their wet shoes off… and we had obscene amounts of hot chocolate and toasted sandwiches and chocolate cake and we wished him well on his journey. And he was there with us, no question, he was there.

Last reviewed December 2017.