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Gunars and Margaret

Brief Outline: In 2008, at the age of 53, Gunars’ sister, ‘A’, had a brain haemorrhage and never regained consciousness. She was eventually diagnosed as being in a permanent vegetative state. In 2013 the Court of Protection declared that it was lawful and in A’s best interests to have artificial nutrition and hydration withdrawn. She died later that year.
Background: At the time of the injury Margaret was a long-term friend of Gunars’ and has since become his partner. Gunars (aged 61) was a senior local government manager and Margaret (aged 67) worked in management development training. They are now retired.

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In 2008, at the age of 53, Gunars’ sister, ‘A’, had a brain haemorrhage and never regained consciousness. She was kept in this state for four and a half years, with a tracheotomy in place and dependent on artificial nutrition and hydration. ‘A’ was a very active, independent and dignified woman – a ‘matriarch’ at the centre of the family. Gunars and Margaret believe that, although she received excellent physical care, she would never have wanted to be sustained in this state. Her body became very contorted and would go into spasm and the years of seeing her in this condition were very tough on the whole family. 

They are dismayed by how difficult it was to find out what could be done about A’s situation, and how little information they were given by treating clinicians. This was a situation new to all involved and there was no framework or strategy for anyone to work with. They only learnt about the term ‘permanent vegetative state’ from a newspaper article about Helen and her son, Christopher, (see Interview with Helen). The family had to take the initiative to get a formal diagnosis, and they experienced long delays and lack of understanding. They report a lack of joined-up thinking across different organisations as they attempted to find a resolution. A very difficult situation was made much worse by the lack of a good system to address the problem and Gunars and Margaret would like to see a quicker and more efficient process to ensure that best interests decisions are made in a timely fashion. They would also like more information made available to family members to help them to be involved as equal partners in the decision-making process. 

In 2013 the family initiated and then supported an application from the NHS Trust to the Court of Protection for a declaration that it would be lawful and in A’s best interests to have artificial nutrition and hydration withdrawn. The declaration was approved and ‘A’ died later that year. Although they believe that letting ‘A’ die following withdrawal of artificial nutrition and hydration was the ‘least worst’ option under current legislation, they would like to see a change in the law to allow patients a more dignified death. 

Gunars and Margaret both now have strong views about their own health care at the end of life. Neither would want to be maintained in a PVS. They are both planning to write formal Advance Decisions refusing treatment if they were ever to be in such a state.
 

Gunars and Margaret find the contrast between who Gunar’s sister had been, and what she became, very painful to observe.

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So can you describe what she was like when she was in a vegetative state? 

Gunars: When she was in a vegetative state occasionally there’d be muscle spasms. Occasionally, as the whole thing became prolonged, contorted, twisted. Her face swelled up a little bit because of the steroids. She had to have Botox treatment to her lips because she kept biting her lip. On a good day she might just open her big blue eyes and you could look into them. But most of the time she was asleep fundamentally. But being cared for in a very good environment, by people who got to know her in a different sort of way from what I’d known her. She was an active sort of person – a mother, a sister, a grandmother, all those sorts of things. 

Margaret: She was a person used to being in control. She was someone who was the centre of the family. She was the centre of the family, she pulled everybody together, and I knew her only briefly before she became ill but even for me, going in and seeing her being increasingly contorted and increasingly… We didn’t know whether she suffered or not because she was heavily drugged, but she certainly wasn’t in the state that she – as I knew her - would have been happy with. Because she was one of these people who liked to be in control of her own destiny. And suddenly there was this woman with no control whatsoever. And we could do very, very little about it, initially.
 

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. 
 

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.
 

Gunars did not realise that the health care team would continue with other life-prolonging interventions after DNAR had been agreed.

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Gunars: After a six- first six week period, we had a meeting with the consultant. And at that point, the most difficult thing that, my sister’s husband probably had to do in his life was to sign a Do Not Resuscitate form. And instantly you think, and that includes, the non-administration of any type of drug. But it doesn’t. It only means that when the person goes into a cardiac arrest situation they will not resuscitate. Meanwhile, they are still providing, in my sister’s case, some ten different drugs to keep her comfortable. And basically there’s too much intervention, right from the start and basically, we’re sustaining life artificially rather than through, natural means. 

Margaret: And there was one significant point, when she contracted— 

Gunars: Pneumonia. 

Margaret: Pneumonia. And we assumed then that things were going to take their course. But they didn’t. Now we don’t know for a fact, but we think at that stage that she was given antibiotics. 

Gunars: She was given that, she was given antibiotics. 

Margaret: I think they found that afterwards, and we understand that she was treated quite regularly for all sorts of infections and so on. And one of the specialists who saw her when we were reaching the conclusion, did say- raise questions about the drug regime. 

Gunars: And the other thing with Do Not Resuscitate instructions, is that one mustn’t make an assumption that when, as in my sister’s case, she we went from a Hospital Trust to the local Primary Care’s Trust responsibilities, that the Do Not Resuscitate notes go from one to the other. And in our case, it didn’t. So that meant that the Primary Care Trust situation that- in which she was in the care and community situation, that they were actually treating her and they would've actually resuscitated her if she had a cardiac arrest. So one important thing is to make sure that all the medical notes go with the patient and don’t make an assumption that it does. 

Margaret: And that the family’s wishes are reiterated each time—

Gunars: Time. 

Margaret: Anyone is moved. 
 

Gunars and Margaret actively pursued ANH withdrawal because it was the only legal option, but comment that pets and farm animals are treated better.

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Gunars: What we look for as human beings is to be treated compassionately and with dignity, and in many ways a prisoner on death row in America gets treated better because at the end of the day he will eventually find out that the day of reckoning’s come and it’s a simple injection. But we discovered in the process we entered into was my sister was effectively going to be denied hydration and nutrition which basically means that you’re starving somebody to death. Is that a humane way to treat a human being? My response to that is not.

But in the end as a family you accepted that that would happen. 

Margaret: It wasn’t a question of accepting. It was a question that if we wished to bring this to a conclusion because we considered that it was in… her best interests, then that was the only route that was available to us. 

Gunars: There’s no alternative as the law stands presently in this country.

Margaret: And we don’t think it is the best option. We think there should be other options. But within the law at the moment it would appear that is the only option. And because we considered it was in her best interests for things to be brought to a conclusion, that was the one that was chosen. 

Gunars: And fundamentally in this country we treat our pets, our farm animals, our equine friends, more sympathetically and with greater compassion and dignity than we do human beings. 
 

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. 
 
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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. 
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