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Family Experiences of Vegetative and Minimally Conscious States

‘Aggressive’ treatment of infections

Sometimes a decision is taken that a patient should be for "‬No aggressive treatment of infections', ‘Do Not Attempt Resuscitation’ this can be quite a vague statement. Precisely what this means in practice will depend on the particular patient and the type of infection, and how people respond at the time.‬‬‬‬‬‬‬ Here people reflect on how things have been discussed with them, and the decisions taken, and what it might mean to prioritise ‘comfort care’.‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬
 

Phil argued for his partner to go into critical care because he feels Lewis gets very little attention if left on a ward.

Phil argued for his partner to go into critical care because he feels Lewis gets very little attention if left on a ward.

Age at interview: 43
Sex: Male
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So the grieving – oh, this crush – this news was [laughs] – so ironically just early into the New Year [my partner] got a UTI and his blood pressure plummeted as well. So they rushed him into [Hospital] and he was touch and go for a couple of days as to whether he would live, and we were back on the ward that we’d started on, so I thought we’d come full circle. But this meeting was whilst he was there. And that, that was the first – that was his first serious illness really. And when we got there – and I think the reason his blood pressure dropped actually was because of a new drug that we were trialing him on. Because Baclofen makes him so sleepy, we were trying him on Tizanidine. But that actually doesn’t seem to be working very well for him. And one of the side effects of it is it’s causing his blood pressure to drop. And I think we were probably lucky that it had dropped when they tested it, because he would have died within twenty-four hours apparently. It manifested itself into very aggressive chest sepsis or pneumonia. 

When we got to [Hospital] they put him on a couple of antibiotics and said – we had to have the whole DNR conversation, which I agreed he doesn’t have a quality of life, so why would you really resuscitate him. Much as I hadn’t really wanted to go down that path. But that’s what they suggested and I couldn’t really argue with it. And then it was a case of, do we put him on a ward or take him into critical care but treat him medically but not organ resuscitationally. And I just – I said I couldn’t bear the thought of him going onto a ward where he’d get scant attention. We had a – we were in a ward for the last few weeks at [Hospital] where you’ve got eight bed in two rooms with one nurse and it’s just crap. And so I said if – could we please go for the critical care option and they did it. And so once again they were fabulous in there and that saved him. And within a couple of days they’d identified the culture that they needed to give him the right antibiotic. 

He wouldn’t have wanted to be like this, at all. But you… what we don’t know or haven't known is what this is yet. And for the – for a long time you believe that there can be a recovery, to have some sort of quality of life. And I think that if – so I had thought that, yes, he probably would be wheelchair bound and might be quite dependent, but I had thought that maybe he would be in a position where he could help me help him. And we could have a nice enough life together that perhaps he might be happy with that. And then the whole – when we were back in hospital this time – which is the first time I suppose to test that question really… I accepted that there’s no point – if his body is giving up let it give up. I accepted that that should happen, so that’s the DNR thing. But I wasn’t ready to accept him being left in a corner to die. But now we’ve gone through that once then I probably would find that less hard next time.

Is that how it felt, it would have been leaving him in a corner to die?

There was a real risk of that, yeah, that there would be neglect. Because his needs are complicated, because of his pain, and he’s in – and he can't talk, he can't ask for help or anything like that. So he’d be stuck and effectively the risk of him being neglected would be acute. Because if you’ve got seven other people who are screaming out you look after them. 

I think having fought through the illness that he’s just had to realise that this is all he’s got at the end of it changes my perspective should something like that happen again. Which is another hideous thing. Another reason that I thought I might have grieved again. But I think if he did get really ill then I probably would look to see if he could just go quietly. And I talked to his – luckily he and I and his mum were always on the same page about no one would ever want to be like this. They say that if you are like this then your perspective changes, so you can't guarantee that he wouldn’t want to have a, an existence where he could have pleasure from my daily visits, daily visits from other people and the dog and all those things. But if something serious happened to him health wise again we might look to see if he would be able to go quietly instead of fighting so hard to help him live, and that’s horrible. 
 

Michael had been moved out of the nursing home back into hospital while Imogen was away for the weekend. She had specifically asked that he should not be moved while she was away.

Michael had been moved out of the nursing home back into hospital while Imogen was away for the weekend. She had specifically asked that he should not be moved while she was away.

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I was furious. And I just said, why is he there? Nobody knew where he was at first and then I found him. I said, “Why can't he go back? What's happening?” And they said, “He can't go back because he needs a special ventilator”. And I said, “Why does he need a special ventilator?” They said, “Because his breathing isn’t good, he's getting pneumonia”. And I was just thinking, what does it matter, you know. But they insisted. So they kept him there a whole week and I just said, “I really want him back at the other place, I don’t want him here”. And eventually they sent him back with this huge machine and a big thing on his face which he couldn’t breathe, he used to choke with it. I hated it, I used to go in and take it off. I just said, “What good is it? Why, you know, it's just horrendous”. Anyway, that – 

So they were saving his life.

Yeah. And what for? They said- I said to one of the doctors, “What if I don’t want this anymore? What if we don’t want this, what do I do?” And that's when he said, “You'll go to prison if you do that”. Nobody said I had the chance to. 
 

The hospital may refuse to place Angela’s husband on a ventilator if he develops life-threatening pneumonia, she talks about her desire for her husband to be free of stress or fear.

The hospital may refuse to place Angela’s husband on a ventilator if he develops life-threatening pneumonia, she talks about her desire for her husband to be free of stress or fear.

Age at interview: 50
Sex: Female
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I – we don’t get any reaction really from – unless he’s physically distressed. Unless, you know, his chest is at him or something like that. Now he was taken into a general hospital Christmas 2012 – 2013, sorry, with pneumonia again. And they, they put him on a ventilator, so – but when I spoke later on to a palliative care consultant who said to me, “Look, the sooner we can put a plan in place for your husband the better. And these are some decisions you might have to make.” He said ultimately it may not be my choice, the general hospital if, if my husband got pneumonia again they may not put him on a ventilator, they may feel it’s better to let his body deal with it in whatever way it’s going to deal with it. Of course the fact remains that although he’s a very youthful sixty-nine, he was sixty-six when, when – he’ll be sixty-nine this year. He was sixty-six when the surgery happened. A very youthful and very fit man. This injury has totally reduced his life expectancy and his longevity and it’s, it’s now like you feel like you’re in a limbo and you don’t know – you don’t know when or how or why. 

[Sighs] Yeah. Maybe your expectations change. …You go from maybe hoping for what might have been a full recovery to partial recovery, to no recovery. I can't say, you know, the fact that [husband] is staying alive – his sister feels very much that he will decide on the next phase for him. And all I want to do is make sure that it’s as stress free as possible for him. I don’t want him to suffer any more in any way. And so I had to have a meeting with the palliative care chap, who was incredible. Absolutely lovely person. And he told me what he thought I needed to make decisions on. And we met again in two weeks and I had made those decisions, and he said, “Making those decisions now, as you have done fast, is excellent. So now I can put a plan in place for [your husband].” And he said, “Have you spoken to the family about this?” And I said, “Yes. I’ve asked them all did they want to be – did they want to give me their opinion on anything, and they all, without exception, said, no, we trust you to make the best decision for [him].” [Cries] 

Decisions I never wanted to have to make. [Cries] They’re not my decisions to make, they shouldn’t be mine. They should be his. And I suppose they will be his, I think [sister-in-law] is right. I think [husband] will decide when he’s had enough. And I, I’ve spoken to him. I’ve spoken to him about it, and I said, “Look, if you have to go, baby, then you have to go if you’re unhappy.” I don’t know where he is, I don’t know what he’s experiencing. I don’t know anything about it, and just not knowing. You feel, okay, I don’t think he’s in pain. And that’s very important of course. I just would hate to think of him being afraid. Or lonely. [Cries] And I can't tell, I can't tell how he’s feeling. 
Sometimes patients are treated by default, without proper discussion of the correct course of action. When Miggy’s son was close to death with an infection she wishes nature had been allowed to take its course:
 

When Miggy’s son was close to death with an infection she wishes nature had been allowed to take its course.

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When Miggy’s son was close to death with an infection she wishes nature had been allowed to take its course.

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So was any meeting held to discuss how to treat that?
 
Miggy: No, not at all. They never, they never, from the minute we took him home— Well, I say that, because we did have the rehabilitation meeting, didn’t we, at [hospital name]?
 
Kevin: Yeah.
 
Miggy: There was no meeting. There was no talk about what should we do about this. But that, that would’ve have been an ideal opportunity to let him slip away. Let us sit by his bedside in a hospital, hold his hand and say goodbye. And I know, I don’t, I’m pretty sure, at that stage, I was no longer [laughs softly] in Joan of Arc mode [laughs]. I think I’d calmed down a bit [laughs].
 
Kevin: [Laughs]
 
Miggy: So I don’t know what was going on there.
 
Did you have a meeting with the doctors treating him at all while he was in hospital?
 
Kevin: They just come and spoke to us on the ward, and that was it.
 
So, he came and spoke to you. What did he say?
 
Kevin: Just said, well, told us what, basically what they were going to do and everything.
 
Miggy: But there was definitely no, because I vividly remember the time when he’d had the big fit early on in hospital, the one that took everything away, took the famous holding tone away. I vividly remember coming in the following morning and the covers were around his bed and everything was all a bit odd. And I thought, oh, what’s going on here? And one of the, I think it was the Registrar possibly said to me, “He’s very poorly. He’s had a really big fit. What do you want us to do?” And I thought, what’s he asking me here?
 
Kevin: Yeah.
 
Miggy: And I twigged what he was asking me and I said, “Well, I want you to treat him, of course.” You know, at that stage, even though he’d had the fit, I think we still thought we might get somewhere. But there was definitely none of that conversation when he had the bad lung. I didn’t, I definitely didn’t have that conversation with anybody, because I think I would probably have given a different answer, given the opportunity at that time. If I was given rea, if I was really given that opportunity when he was admitted into [hospital name] with the bad lung, I’m sure I would’ve said, “Well, as long as you can sedate him and make sure he’s not in any discomfort, let’s, let’s let nature take its course at this stage.” But the question was never asked. 
Fern is someone who has changed her mind over time about how her partner’s should be treated.
 

Fern originally insisted on aggressive treatment for all her partner’s infection, sometimes in the face of medical advice. However, now she thinks he had ‘had enough’, but still found that a very hard thing to say.

Fern originally insisted on aggressive treatment for all her partner’s infection, sometimes in the face of medical advice. However, now she thinks he had ‘had enough’, but still found that a very hard thing to say.

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I’d had a meeting with Doctor [Name] back in 2010, one of our consultants. And he had said to me, you know, “How do you know when – how would you know that it’s enough, do you know? Many things happen to people when they’ve stopped fighting, like they get recurrent infections, and [partner] doesn’t seem to be getting any better, and how would you know?” And I said to him, “I would just know, I would just know, I can't explain it, but I’d know.” In 2010 [Patient’s name] was still fighting. In 2011 [Patient’s name] was still fighting. Come 2013, that – his voice was in my head, Doctor [Name] voice was in my head, “How would you know?” I said, “I know.” 

And I went to – I – you know, he went into hospital with another bout of some sort of chest infection. And oh my God I was shaking, right, and I decided to go and voice it to the doctors that I didn’t think he should have any more antibiotics. And I said to them that his mother was not going to agree with this and she is next of kin. So I’m just voicing it, I don’t think he should be treated with antibiotics. I think he’s had enough. 

So, you know, there were things that were leading up to say that he’s, he’s had enough, do you know. And I said, “I just don’t think he’s responding to the antibiotics very well, I don’t feel comfortable.” And I was shaking, I was shaking, and they said, “Okay, we, you know, we hear what you’re saying.” And I phoned the nurse up at [the care home] who I get on with really well, “I just told them I don’t think they should treat [my partner].” And that was the first time I said it out loud, “I don’t think [my partner] should be treated.” And I was so upset at the hospital that I’d voiced it. And then they didn’t listen [laughs]. And I was like, “But I voiced it, I voiced it.” They treated him anyway. They treated him anyway. And it was just like, [sighs] so, you know, I stopped really going up the hospital after that. You know, when he started to go – because he kept going in obviously with chest infections and what not, it’s [Name]. Urine infections, the UTIs, the catheters, the PEG, whatever. In and out, in and out. [Name] and so I stopped going, and made excuses, you know, and let [partner’s] family deal with it. Because I just thought, you know, no, I don’t agree with it, I’m not going up there. 

So I stopped going up to the hospital every time he went over to [Hospital]. But come June last year he got very, very poorly. Pneumonia - and the microbiologist said, “We’re not going to treat him anymore.” And I was like, “Thank you.” They said, “You – we will not be treating him. You can bring him up to the hospital, but as...” that’s the team of microbiologists at the hospital said, “We will refuse to treat [patient’s Name] anymore because he does not respond to antibiotics.” And that was the case. You were going in too often, he wasn’t responding to them, you were putting in like bleach or drain cleaner or whatever, aren’t you? He’s not responding to them. So they said, “We won't be treating him.” So when he got this bout of pneumonia, he was very ill. And we didn’t expect him to go the night.
 

It was a relief for Fern when a decision was taken not to treat her partner in future.

It was a relief for Fern when a decision was taken not to treat her partner in future.

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What a relief. You know what, because I’d obviously got to that point beforehand and they were still doing it. And because – I think they felt they were in some sort of legal tied thing for a while. And so for them – as well they kind of, they kind of just took the decision at that point. And like the microbiologists just took it. Do you know, they just took that decision, bong, put it down. And you know before, that’s the kind of thing I would’ve absolutely rallied against. “Who the hell do you think you are? Oh my god, I’m getting lawyers down here.” [Laughs]. Do you know like it would never have happened. I did get lawyers, that’s how I roll. But, do you know like, when they did it, it was like a cheer because, you know, I’ve been at this loggerheads of wanting this to happen. 

And all the team up there felt was right for him. So when the microbiologists came back with that, it was almost like a mini celebration. Do you know, it’s like [big sigh] "Thank you!" because I truly believe he’s had enough. I don’t – I don’t say it just because I’ve had enough, and I have had enough. I have, I don’t feel bad saying that. I have had enough. But I truly believe he’s had it too. And that’s why it was so – it’s so much of a relief that they – they kind of – isn’t that funny right? That when they make them decisions earlier on, yes? You say, “That’s not your decision to make.” [Laughs] I’m a part of this process too, don’t you know. And then when they make this decision now, you go, “You make that decision, you can have that one, that’s fine.” And you don’t even – I don’t even bat an eyelid.

It’s been too much suffering on his part and it’s unkind. You know, this is humane to do this, at this point. So, you know, it was a real relief actually. When they – it was – do you know what it feels a bit like, light at the end of the tunnel. This is the first step of the end. It is that first thing that says, this is it now, this is the home run, we’re nearly done. 
 

Fern talks about the change from her view a few years prior that everything should be done to keep her partner alive, to now believing it would be better if he died.

Fern talks about the change from her view a few years prior that everything should be done to keep her partner alive, to now believing it would be better if he died.

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Because – seeing him alive became harder than seeing him die. You get to a point when there’s no improvement and you stop being able to convince yourself there is. When they are constantly hooked up to IVs and having painful UTI infection, painful, you know PEG changes, which we all know bleeds and are sore every time they do it. You know, they’re having catheter changes, they’re having – and whether that’s, you know, the one in their belly or the one that, you know, the actual, the one that goes up, that’s painful and uncomfortable. They’re having physio that often is painful and uncomfortable. 

They’re going in and out with these IVs, they’re getting these infections that are painful and uncomfortable. When they spend their entire life in a state of pain and discomfort, that’s – I think you only accept it when you can see that actually – this isn’t a life worth sustaining. It’s not a life they would want and it’s not a life I want for him. And no matter how much I would like to believe he would have a miracle and we would see him recover and how much joy that hope would give me…

If you can’t see that anymore and you realise that death would be better now… I think that’s when the acceptance comes. Do you know, and that there are better ways to – there’s better to show I love him than to prove I’m sustaining him. You know, he knows I loved him, I’ve done it. I’ve got my medals, I was there [laughs] I supported him. I fought for him. I fought harder than a lot of people have fought for people, you know, loved ones. I’ve been through the mill, I’ve had the lawyers. I’ve got the nice nursing home, I’ve done the – I’ve done the fight. No one could ever say I did not fight for him. Don’t need to prove it to anyone, because I proved it to myself and I proved it to him, he knows it. He knows that I did everything I could. But there are some things that we can’t control and you either accept it or you don’t. There is no in between. 

And when you come to a point of acceptance, you give yourself – you go through a big grieving process, it’s not easy to come to acceptance. But, you know, you accept that they are not coming home. They are not coming home. And then you can grieve that. Because for a long time you believe they will. You save a space for them in your life, because you’re like, they’re coming. Some people do that with their whole houses, so that they can move in, do you know, with wheelchair access. 

But there comes a point where you say, “They’re not coming home.” And you can grieve that and that can take a long time, you know, months. Spend as much time as you need in the foetus position and ball your eyes out and say, “But I love you enough to let you go.” And that’s where we’re at. I just wish they’re [xxxx] [laughs]. It’s enough to be there. So yes. 
 

Fern is pleased her partner is now on a palliative care pathway. She describes end of life care in a positive way when compared with aggressive life sustaining treatments.

Fern is pleased her partner is now on a palliative care pathway. She describes end of life care in a positive way when compared with aggressive life sustaining treatments.

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It’s things like they help you understand more of what the body’s doing at end of life and why the things you’re doing is actually kinder for him. Everything’s about making things kinder for him and not [slap, slap, slap] sustaining life at all matters. Which can be at times – very aggressive. Going through the hospital treatments and surgeries and everything. It’s all aggressive, [slap, slap, slap] sustain life, keep it going. End of life care is very, very gentle, it’s very, very – it’s lovely, it’s really nice. It’s really comforting and they just make sure he’s okay. Do you know, anything he needed we’d have. You know, especially when it comes to things like the pain relief. 

And there’s drugs you didn’t even know existed for stuff like that. The foam one, or whatever, it makes it all foamy. I didn’t even know that existed. You know, I think that’s beautiful that we have that. Because, you know, I knew there was one – we’d had it in the hospital the one that makes you pee it out. But – with the fluid on the chest. But I didn’t even know that existed and they’re so there, ready to help, to make him comfortable. 

Last reviewed December 2017.
Last updated December 2017.
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