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Family Experiences of Vegetative and Minimally Conscious States

Family experiences of applying to court for treatment withdrawal

We spoke to several families where a legal application had been made to allow the feeding tube (artificial nutrition and hydration) to be withdrawn between the 1990s and 2017. The court approved the application in every case where the patient was confirmed to be in a permanent vegetative state and in some cases where the patient was minimally conscious. (Please note that the law has changed since these families went through this process – do get up-to-date advice regarding any potential legal proceedings).

These family members praised the clarity of legal procedures and the skill and compassion of many of the health professionals who came to do expert clinical assessments and the legal professionals involved in the case. They were grateful for efforts to reduce the strain on families. But they also highlight some challenges. In particular, there were often long delays in getting cases to court. 

Here, Helen, Gunars, Margaret, and Cathy share their practical or emotional experience of the process of preparing applications and then finally going to court. They have quite different experiences depending on the clinical team and when their case happened. The court case for Cathy’s brother was in 1998, the case for Helen’s son was heard in 2010 and for Gunars’ sister in 2013. They tell their stories in the hope of supporting other families and helping to improve the system.
 

After some initial challenges, Helen found the legal procedure was robust and it was helpful to know that the final decision was not her responsibility. She explains what happened in her case, and offers advice to other families.

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When we took the decision that we would consider the option of ending Christopher’s life, it was done so knowing him as well as we did, that is what he would have wanted. 

The first thing I think that any family needs to do is to talk to those who are caring for their loved one. And just get a sense of what they feel the medical situation is, what the long-term prognosis is, and actually what their personal views are, because that will affect your journey. Armed with that information, I then wrote to the Area Health Authority and asked them to consult the Primary Care Trust solicitor. And then, once it had been decided that this was something that they were prepared to consider and to work with us to do, they then collated all of my son’s medical records from every hospital that had treated him. So that they could get a full picture of really how desperate the situation was. The medical records all added up and they could see that this young man was not going to recover. And the costs of keeping him alive were going to be very high, financially and emotionally for everybody involved. 

And for us that was the thing, Christopher’s care kept him alive. He wasn’t living independently. He was being kept alive artificially. And we knew that if nature took its course he would have died a long time ago. And what is natural and right was actually quite comforting, it was reassuring for us. 

We were told when the idea was first broached that what would kill him if we followed the withdrawal of feeding and hydration route was organ collapse due to lack of fluid. That would be the main thing; and it would be very painful and agonising and no painkiller could touch it and he would die in agony. And that broke our hearts for weeks. 

So we put the whole process on hold for weeks while we actually took a deep breath, mopped the tears and thought, no, before we make this decision, let’s do a little bit more research and talk to some people who have real expertise in this field. And they were able to reassure us that modern painkillers are well able to deal with the distress caused by organ failure. And painkillers are always given very generously in cases like this, that morphine pumps are very efficient. And to be honest, Christopher lost no weight at all. His hands remained the same, his face remained the same. The only thing that changed was that he slept more. That was the only thing.

Like most people as a family we really struggled with guilt at even thinking about ending Christopher’s life. And my barrister was aware of this and he took me on one side one day, over a mug of tea, and he said, “Do you realise what you’re actually doing here?” And I said, “Yes, I’m following a process to end my son’s life.” And he said, “No, you’re not.” And I said, “Aren't I?” And he said, “No”… “All you’re doing is you’re asking the question of the court. The court will then say; yes this is a permissible course of action, or; no, this isn’t right. You’re not deciding to end your son’s life, the judge and the court will make that decision.” And I felt as if a burden had been lifted then.

Sometimes I wish I could, I could just close the door and allow myself to forget for a few days that it ever happened. But one thing that made it all of any sense to us, not just me but his twin brother, his sister and his grandparents, was that Christopher’s life shouldn’t have been lost for nothing. And if it can help other families to look after themselves during the long, drawn out nursing process. If it can help other families be open minded about whether they seek to end the life or not. Both options are equally valid, because every family is different, every patient’s different. But if it can allow people to think with an open mind and an open heart and then possibly, possibly tackle the process of ending a loved one’s life with the confidence that it is the right thing. They’re not wicked, they’re not cruel, it doesn’t prove that they, they no longer love the patient, then it’s worth doing.
 

Gunars and Margaret have some clear messages for health care professionals and organisations. They report delays and poor communication and stress that professionals should take the lead and ensure the right process is followed.

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Gunars: Out of frustration then I went to see the nurse in charge and basically we had an ethical debate, at which point, while I could discuss the basic ethics of how doctors perform, I couldn’t discuss anything about permanent or persistent vegetative states because I had no knowledge base. But once we did get the knowledge base, through articles like the newspaper, Sunday Times article and the American medical professionals, then you could sit around a table and say: “Well, I think we can do something different and we should do something different.” And then ultimately that was confirmed as being the case and things started to move on. 

Margaret: But the dilemma is that the people who are caring for people who are in permanent vegetative state are people who are trying to do the best for them in the condition that they’re in, by and large, and don’t have the longer term view of, “Is this actually in their best interests to look after them as well as we are?” They’re trying to maintain the status quo, and therefore anyone who tries to interfere with the status quo, in their view, is interfering with what they’re doing as a carer. 

Gunars: And in terms of the medical side of things, when there’s any correspondence with the, for example, with the Care Trust, the response times were ridiculous, generally, in that one would expect that within ten working days you would get an acknowledgement to say, “This matter is being looked at, and in two weeks time we’ll give you a response.” That never happened. …At one point there was no communication for about a month to six weeks to quite a lengthy note I had sent, and basically it was because they were off sick and there was nobody else taking up the issues. 

Margaret: But we were in the middle of a situation where there were a lot of people who didn’t really know what to do, how to go about it. If there were more information about and people had a clear path to go down, which now we’re in a position to give information on, then they could follow that and not have to fight at every stage. And at times we almost gave up. But we didn’t give up, but we, you know, we thought - this is just ridiculous, we cannot get anywhere because the people we were dealing with had other priorities, our particular case was not top of their list, and instead of us being able to sit back thinking well it will happen within what is a reasonable framework, we were left feeling that unless we fought at every single stage it was never, ever going to be at the top of anybody’s list. And I think that was difficult, and that caused other difficulties within the family. …Once someone is in this sort of state, the family is emotionally not in a very good place to do anything about anything. 

Gunars: In fact, traumatised. 

Margaret: Very traumatised, do not know what any of the choices are. And the choices will be different, depending on the family. But the medical profession should have a framework which is very clear, which enables them to explain the options at the appropriate times in the process. 

Gunars: They should technically after one year, after a person’s been diagnosed as being in a permanent vegetative state, discuss with the family the options, but very rarely do they do this. And certainly they didn’t do this in our case because it was thirty-six months where there was nothing done whatsoever, which then led—

Margaret: And it was at our instigation. 

Gunars: And it was our- it was at the family’s instigation, not the medical profession’s, professionals, to actually take this forward. 

Margaret: But the consultant that we spoke to at that stage, which was in the first best interests meeting really, or I don’t know whether it was first, but it was one of the ones that was actually called a best interests meeting, he was very clear that he waited for the family to come to him and said that that’s why they hadn’t moved forward with us prior to that. 

Gunars: And once the medical profession got all the information, all the CAT scans, all the MRI scans, all the X-rays, etc, they’re in a position where they’ve got the knowledge base to actually give guidance, whereas families have got nothing, not even a blank sheet of paper. They’ve got nothing. And basically when they’re- when you’re emotionally traumatised by what’s in front of you - you can’t think clearly. And it’s only when in a quiet moment you think “there must something better than this” that you can then perhaps be, as I was, fortunate enough to read one newspaper article which then stimulated me to say, “Yes, we can do something about this,” and not just accept the status quo. …Medical experts that are called in to do things, like WHIM assessments, SMART assessments, care home’s view of the situation, all that information is useless until it’s actually put into a framework and then follows a process which then ultimate leads to trying to obtain a court order. And until that happened especially when there’s little knowledge and expertise, because it very rarely happens, then the process seems to take longer than it should do. But certainly the legal side in all this were really the most efficient.

Margaret: We were the victims of no system. There is no system to deal with it. People are totally - people with in the profession appear to be ignorant of what the appropriate pathways can be and therefore are not in a position to give advice to relatives. And that is ridiculous. 
 

Cathy was grateful for the kindness of all involved but, sixteen years later, remains very distressed about what happened. She highlights how families can be left feeling very guilty if they are the ones who have to start the discussion about withdrawing

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Well reading the transcript of the court and… I do remember how kind everybody was at the court and how they talked a lot about the sort of level of care of Matthew and the devotion and the tragedy, which is what – [reads from court transcript] “it’s a very moving account of how the family had to face the appalling tragedy which confronted them and how they had to live with the day-to-day knowledge which grew upon them that there would be no hope of recovery”. That’s a good way of describing it, its a knowledge that grows upon you.

Last paragraph, he says: “I would like to express my appreciation of the tremendous care which has been given to M by his mother, father and sister and to express what I’m sure all those in court will wish to be associated with the very greatest admiration for their courage and the care which they’ve given to him [tearful]. I believe the time has come when the reality of the position must be recognised and accordingly, I make the declarations”. 
I remember from the court case that everybody was really kind …I remember when we actually got – and the official solicitor also was incredibly kind. So everybody involved was very nice. 

I think it [the court judgment] is very well and almost rather beautifully expressed. [Reading from court transcript]: “They had at the beginning, optimism and hope and one can well understand it, but the initial grave condition was exacerbated quite shortly afterwards by the onset of epilepsy. By nineteen ninety-two, this young man was experiencing epileptic fits fortnightly. There is no doubt in my mind, having heard and read all the evidence that for several years now this young man has been wholly unaware of anything that goes on about him.”

Let’s hope so, you know. 

It’s very nice to read it and I think that it would be nice if I could, you know, give myself a bit less of a hard time about it [tearful]. I think it was really difficult for me. It’s really difficult to say that it’s what you want to happen. It’s really difficult to be the instigator. 

Do you have ideas about what could change to make it easier for another family in these circumstances? 

Well very practically, actually, I just think there should be process. There should be a process that people go into and I can see that it’s obviously – it’s an extremely difficult area and obviously the – one of the big difficulties is that because this sort of thing happens out of the blue, so nobody will have any – probably - won’t have any prior knowledge or experience. So there’s going to be an awful lot of people to sort of absorb from the off. But I definitely feel in terms of if you do then get further down the road and by – I don’t think – I don’t think the onus should be on the families to raise the question of – I don’t even really want to say withdrawal - it’s a bigger question. I don’t think the onus should be on the families to raise the matter of whether the person is really alive, whether the person would be better off to be actually dead because that’s really troubling to have to even come to that conclusion, I think, about someone you love. 

I know a lot of doctors who say: “we wait until the family raise the issue. We don’t want to impose...” 

That’s just awful, isn’t it? You can see why they – I’m sure it’s well-intentioned but there must be a way of saying, “This has happened to other people before and this is – this is how other people – this is what other people have experienced.” 
In 2013 National Clinical Guidelines were issued addressing some of the concerns raised by Helen, Gunars, Margaret and Cathy. The Guidelines (Royal College of Physicians, 2013) outlined the responsibility of the Trust or Clinical Commissioning Group to take the initiative in making an application to the court and specify the timescale for doing this. This has since been built on with new interim guidelines (2017) which specifically address the legal issues whiich have been produced by the Royal College of Physicians along with the British Medical Association and the General Medical Council (See ‘Resources’).
 

Cathy was excited to read the National Clinical Guidelines brought out by the Royal College of Physicians in 2013.

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But also to say more about the RCP guidelines. So reading them—

Well, it was just – it was actually blissful. I just felt– I felt not alone and I also felt – it’s funny, isn't it, because obviously it’s quite a long medical report. I wanted to run around, I wanted to find a car park to run round with, waving this report and waving a football rattle in my other hand sort of cheering. Because it just felt sort of – so bits I – the bits that were particularly yes, yes, yes, were about – there’s a bit where it says after – if there’s a diagnosis of PVS after a year it becomes – and I think the expression is not only appropriate but necessary to consider withdrawal. And that’s the thing, you know, it was six years before we kind of – probably because I eventually said to my parents what I was thinking that we then… were put in the situation where we had to do it ourself. And the very fact that the report says, in the past, it says, families have had to do this and they shouldn’t have. And I thought, yes. Because I don't feel we should have had to. I mean, my parents had to be the plaintiffs, and Matthew had to be the defendant. Which is just so horrible, isn't it? 

And actually all the people involved were really kind. So the process was awful. Every single individual – it’s not something you can fix with a bit of customer service training, all the individuals [laughs] were incredibly kind, and everybody at the court was incredibly kind, and – but just the process of it was so awful. 

And then the – and the stuff, reading about how it felt – because I still feel very guilty about the fact that I couldn’t –I didn’t last out the withdrawal process. [Speaking tearfully] I was sort of supposed to but I just actually couldn’t, because we’d been told it would take seven to ten days and it took thirteen. [Sniffs] And I think halfway through day eleven or something, I just couldn’t. I just, I just couldn’t do anymore [cries] I had to go back to London. And I still feel really bad about that. 

But again, reading the report that said about how important it was that even proper medical people used to doing this as their job needed to be counselled around it, and how it should – you know, and all the things that could happen. And I just thought, yes, it shouldn’t have been what it was. Because we – because again we didn’t feel it was right for the nursing home to have to do it. And it’s not like anyone else was offering, so we brought Matthew home. Which both my parents wanted to do, and me, we all sort of thought that was the right thing to do. [Sniffs] But yet it was my mum and our friend who looked after Matthew and she carried on looking after him every day at the nursing home. So it was my mum and my dad popping out to buy groceries and me unable to cope [laughs]. And then just reading the report and seeing what it should be like, and just thinking, yes, it shouldn’t be like that, should it? It shouldn’t be like that. And that, that people need to be counselled, and that’s okay.

Last reviewed December 2017.
​Last updated December 2017.
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