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Family Experiences of Vegetative and Minimally Conscious States

Reflections on own end of life wishes

The experience of having a relative with severe brain injury informs people’s thinking about their own end of life wishes. It also highlights the importance of discussing views about death with family and friends.

A few people we spoke to thought it would be difficult to know what the right way forward would be if they were ever in their relative's situation. Olga (whose brother-in-law recovered consciousness) thought any decisions should be left in the hands of God. Jim, (whose wife died several months after her brain injuries) is in favour of thinking ahead but thinks that it is hard to predict what will be right for you at the time and there might be unexpected recoveries.

Most people we spoke to were adamant that they would not want to be kept alive if they were ever in the same state as their relative. Fern and Emma would both refuse tube feeding rather than be sustained in such a condition. Both women also think that it is a very difficult decision for someone else to make, so they want to be clear that it is their own wish that they be allowed to die in this way if necessary.
 

Fern thinks keeping her partner alive now is inhumane. She would not want that for herself – and, above all, would not want to put her family through it.

Fern thinks keeping her partner alive now is inhumane. She would not want that for herself – and, above all, would not want to put her family through it.

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My daughter’s already got a father in a vegetative state slash minimally conscious, but you know it’s – at this point. And she’s going to go through her life without a father. I don’t want her to have to support her mother like – I don’t want to have her to have to do what I’ve done. 

And I don’t want anybody I know to have to make those decisions for me. I have told my family though that I don’t want to be kept too long. You know, they know that. I wouldn’t, I wouldn’t do it. You know why, I wouldn’t put my family through it, that is the truth of it. Even if I was really going for it in there and I was in there wide awake, unable to do anything. You know what, I’m not doing it to them, I’m not doing it to my daughter. So I would not have it for myself and I think that should be a key message to a lot of them doctors, because you know they wouldn’t do it to themselves. 
 

Emma is clear she would not want to be in that situation, and that it should be her own decision.

Emma is clear she would not want to be in that situation, and that it should be her own decision.

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Would you want a feeding tube in for yourself? 

No. No, I think having – I mean, I’d want the basic to make sure that you, you know, are – what is your prognosis. If it’s not good, that’s that. And I would take that away from the children or anybody, you know, because this is what I want. Because I would not want to be in that situation. That’s the end of that. And I’d want them to know that I wouldn’t – well they do know, I’ve said, you know, as nice as – you know, without upsetting them, that is what I want, and you know that I would not want to be like that, you know, like granny. And I mean, you know, it’s, you know, it’s a very difficult one, isn’t it? I, I only hope that, you know, you mustn’t be fearful of it. I’m going to live until I’m eighty-eight darling, it’s absolutely fine. But… [Laughs].

But should I have a stroke at fifty…

You know, so it’s – yeah, I mean, you don’t know, do you? I mean, you can't – I mean– you know, I hope, I hope, I hope, and you probably know, that, you know, you know, one thing, that if you can have the best – what is it the best of care meeting, that is one step forward. And that should be driven out to every single family that is having to embark this. Really, really think about that. Because I think it would make such a difference. It won't make anything better or easier, but it will make a difference. And perhaps a decision, you know, I – it was easy to say, but I mean, it isn’t easy. It isn’t easy. It isn’t easy.
Having a relative in a disorder of consciousness prompted family members to talk to one another about what they would want. 
 

Helen now knows what the whole family would want.

Helen now knows what the whole family would want.

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Sex, drugs and rock and roll at every turn, but mention death and everybody gets hysterical. 

And why is it important to talk about death?

I think if it’s something that is part of your life, if it’s a reality you’re going to have to face sooner rather than later, pushing it under the carpet isn’t going to help. Information is important.

Have you – have you thought about your own end of life wishes and what you would want if you were ever—

Oh yes.

Serious, seriously brain injured. Oh, she says enthuse—

[Laughs] Do you know, the whole family has. It only has to happen once and everybody goes back to the drawing board and thinks, “what would I want if it were me?” And I know exactly what all of the family would want, and they know exactly what I would want. So there’s, there’s no misunderstanding [laughs].

And would any of you want to be kept alive in Christopher’s state?

No.
 

All Rifat’s relatives are clear about what treatments they would refuse.

All Rifat’s relatives are clear about what treatments they would refuse.

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Has it changed how you think about your own life and your own death?

All. Everybody in our family, they all say it to each other and they all are ready to write it down. That, yes, if there is an operation, if you have an operation and you need life support for that reason, for a temporary reason, it’s okay. But if you have a stroke and if you have a massive heart attack, never, never ever put anybody in the life support. Because it drains, it drains absolutely – you even lose the capacity to mourn. You even lose the capacity to grieve, because there is no grieving left. And people, people started coming to see – and they started grieving, and then after one, two, three months, everybody left, because life needs to go along. So it’s just the immediate family, a few members, who have to go through and who have to question them every single day. Better just to go.
Even when families believed they knew what their relative would have wanted, this was not always accepted by medical professionals.
 

Gunars’ sister had not written down her wishes, so when the family tried to represent what she wanted, this was treated as ‘hearsay’.

Gunars’ sister had not written down her wishes, so when the family tried to represent what she wanted, this was treated as ‘hearsay’.

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When did you write your first, what was then, a ‘living will’?

Probably about four or five years ago I wrote the first living will and that was influence because of what had happened to my sister in terms of she ended up in a persistent vegetative state and didn’t leave clear guidelines and that then gave the family and the clinicians a problem in the way that they treated her and perhaps resulted in her not having a compassionate and dignified end to her life within a reasonable time scale. The time scale was four and a half years and on reflection now I think that was excessively long and was partly due to the fact that while she may have said ‘I don’t want to be left in this condition’ when we saw someone that was obviously suffering… 

Because that wasn’t recorded anywhere, and it was just hearsay, when then it came to dealing with legal people, or the medical profession it was difficult to get them to accept that that’s what she wanted. And basically as a family we could say it ten times over but they would only go with what they could do legally to provide her with the care that she needed. 
Some relatives had discussed their wishes after having experienced an earlier less disabling brain injury - realising that a second incident might leave them further disabled and unable to make their own decisions at the time.
 

Nik’s father had discussed his views with her, and she said it was relatively ‘easy’ to accept the DNAR notice.

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Nik’s father had discussed his views with her, and she said it was relatively ‘easy’ to accept the DNAR notice.

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That was when he first went into the care home, just that if it ever came to it, you know, where something happened that, would I want him to be resuscitated, to be – you know, to be brought back or – well, no, that – that was quite, – that was quite an easy question not to bring him – if he was ever and they had the chance to, I know it's awful to – to go, I wouldn't want to bring him back to that again. So that was an easy question really, and the – the whole family agreed with that. 

I know there's probably people that feel differently because they can't deal with letting them – their loved ones go. But for me, because I knew how he was – his views on this kind of thing before were so strong after his stroke that he didn't want to be alive if he couldn't do things for himself. So I – but there's other people in different positions and their family members would have said different. So you can understand both. 

Yeah, but you can only speak for your father.

Yeah, yeah. So that was easy for me.

David and Olivia talked about the value of having end-of-life wishes documented in a form that you could show to professionals in a best interests meeting. Although David’s mother had expressed clear views to them in advance of her injury they had nothing in writing. They both intend to write Advance Decisions themselves.

One woman we spoke with showed us a letter that her relative had written before an operation saying that if anything went wrong he did not want to be kept alive with a feeding tube. His letter was very important in representing his wishes and clinicians took it very seriously. It also helped her: “The fact that he’d written what he wrote helped you cope with it in your head because otherwise it would feel more like it was your decision.” 

Cathy would not want anyone she loved to go through what her brother went through. Nor would she want to go through it again herself. She has written an email to her mother to provide evidence of her own wishes.
 

Cathy had written down her own wishes, and would like other family members to record their wishes in writing too.

Cathy had written down her own wishes, and would like other family members to record their wishes in writing too.

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So if I was in that situation again, I would be wanting the person to die. I wouldn't take the risk. It's terrible, isn't it, really? So as much as I love the people that I love, if I was on the receiving end of the dreaded phone call and if I was told… it's back to the “fate worse than death” thing. If I was told that, I want to say my little boy but I can't. It just feels too like asking for it, so I'll just say, you know, like someone I love. I'm certain if I was in that situation again, I wouldn't be praying for somebody to be, to live at all costs. Probably the opposite. So if somebody, if somebody told me that someone was in intensive care I'd just be thinking, "Oh god, just let them die." [Long pause].

And if you had a major head injury and were in intensive care, early on, seven days, what would you want?

Oh yeah, let's not take the risk. Let's just… I wouldn't want to be… I wouldn't want anything done to… The thing is I wouldn't want an opportunity to be missed, you know, an opportunity for death early on to be missed, if it couldn't be… I don't mean that if I stubbed my toe I'd like someone to hit me over the head with a hammer and finish me off. But, but that's kind of like not far off how I feel [laughs].

What about if it was a head injury but there's still a 20% chance that she'll come back to independent life but we’re in the 80% region that she might be severely brain injured?

No, I mean I would hope in that circumstance that people would just let me go.

What if it was 50/50: 50% chance she might just come back to an independent life, or a life that she would value and a 50% chance that she's going to remain severely brain injured, vegetative, minimally conscious? 

Still I don't think I'd take the odds, to be honest.

You've got a lot in common with most neurosurgeons.

[Laughs].

You're about the same place as the most neurosurgeons are, whereas most of the population are, "Oh, 5% chance of meaningful life, I'd take it," because they don't know.

No, they don't know what the concept, what the other side looks like.

It's like binary thinking. They think in terms of life or death, whereas you know what can happen if you miss that opportunity. So have you written down your wishes?

I've sent my mother an email about it. But I think I will, I think at the time I did that there maybe wasn't a form or I didn't know that there was. So I think I shall write down the proper form. It would probably be taking too much upon myself to issue one to all my family as well. Can you fill this in so I'm not looking after you? But it's terrible isn't it, but that's sort of what I'd like to do.

Mum, dad, happy Christmas.

Yeah, can you fill in these forms, please? Because if you, you know, become really, really ill, the deal's off. I don't feel anyone should have to, I don't think anyone should have to live in that condition and I don't think anyone should have to witness it. I think it's the cruelest thing, just to see the transformation of someone into that is such a cruel thing.
Unfortunately none of the patients had written a valid and applicable Advance Decision (a “living will”). This was a fact which some families bitterly regretted. An Advance Decision is a formal document (with a signature from a witness) setting out your end-of-life wishes. It allows you to set out what treatments you wouldn’t want in case you become unable to make decisions for yourself in the future and it is legally binding. This means that a doctor or healthcare professional is bound by law to follow the decisions set out in your form.

Gunars and Margaret have both been influenced by what they witnessed to draft Advance Decisions. They have very different wishes but both believe it is important to record them in a legally binding form. 
 

Gunars and Margaret both believe in recording their wishes in an Advance Decisions – and have made different decisions about what they would want.

Gunars and Margaret both believe in recording their wishes in an Advance Decisions – and have made different decisions about what they would want.

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Margaret: It’s…

Gunars: As ligaments and muscle deteriorate, the body just takes its course and does what it's doing.

Margaret: So this is what I mean about in - you know, when I think of someone in a coma, I think of it peaceful. But it isn't like that at all. It's actually this contorted person in front of you. But I find it incredibly difficult when we go and see her, incredibly upsetting that anybody is allowed to be left like that.

If it were you, what would you want for you two -?

Gunars: I've written a living will now.

Oh yeah.

Gunars: So it's pretty clear.

What does it say?

Gunars: It means no medical intervention. If I have a stroke now in the shower, or whatever, no medical intervention of any description. 

Nothing at all?

Gunars: Nothing.

No CPR?

Gunars: Nothing.

No ventilator?

Gunars: No. Nothing. Nothing. I'm going to let life be as it's meant to be and that's it.

I am concerned - I do have concerns about the point at which at which all care should be withdrawn. But I’m intending to write mine, my Advance Decisions, in such a way that it makes it very explicit that I do not want to have my life prolonged when I do not have full mental capacity first of all and secondly when my quality of life is incompatible with the sorts of things that I love to do. And my intention is to draft something that expresses what I believe life is all about and to look at, with my daughter and my partner, at how then my wishes should be interpreted and I intend to find some more details on-line about exactly what sort of things I have to include. You tend to assume that everything is going to be OK, that it’s not going to happen to you. But when someone you know does go through it, and we know several people currently who have been in similar situations, I think it’s worth being very explicit about it because I don’t want to end up like them with a quality of life that is totally unacceptable – to me. It may not be to others – but to me.

What’s made it difficult – I meant you haven’t written an Advance Decision yet, and it’s been four and a half years or whatever, and you know other people who have. What’s made it difficult to write one? Why haven’t you yet?

Because I think I think I’m invincible and it won’t happen to me! And we’ve been so preoccupied with trying to sort things out to do with my partner’s sister that I haven’t really had… I haven’t felt that I’ve had the time or the energy to give to it. Whereas now that’s been brought to a conclusion I feel that the time is right for me.

For information about how to write an Advance Decision refusing treatment see Resources.

Last reviewed December 2017.
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