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David and Olivia

Brief Outline: In 2008, at the age of 53, David’s mother 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Court of Protection declared that it was lawful and in her best interests to have artificial nutrition and hydration withdrawn. She died later that year.
Background: David (aged 35) is the patient’s son and Olivia (aged 36) is David’s wife. They were the main family carers after David’s mother had a brain haemorrhage. David is self-employed and Olivia works as a university researcher.

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In 2008, at the age of 53, David’s mother 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. David’s mother was a very active, independent and dignified woman – a ‘matriarch’ at the centre of the family. David and Olivia believe that, despite receiving excellent physical care she would never have wanted to be sustained in this state. Her body became very contorted with twisted limbs and wasted muscles, and would go into spasm, and the years of seeing her in this condition were very tough on the whole family. 

David and Olivia were the main family carers after his mother’s brain haemorrhage. For them this meant “five years of constant worry and sleepless nights”. In the first year, David hoped that his mother would recover: “We tried every trick in the book to make her have eye contact, to make her communicate, but there was nothing.” When they realised the extent of the damage, they questioned why doctors had undertaken life-saving brain surgery in the first place: “Later on, we thought, you know, “Why, why when you opened her head, why did you bring her back? …. You know, how dare they leave us like this, in limbo with someone that’s vegetated, rotting away on a bed and we had to watch that.” They describe how, in the early months on a general ward, she often choked on her own phlegm, ground her teeth, sweated extensively, and was left unwashed: “we were not only grieving her, but then fighting for her dignity as a woman to be kept clean, as just a basic thing. It was disgusting”. The couple struggled to ensure that she had the best possible care, and was as comfortable as possible – despite MSRA, bed sores, pneumonia and other repeated infections and surgery to deal with her spasticity and contractures. Once David’s mother was moved to the long-term care home the quality of care improved massively and she seemed much calmer: “they were just so good with her, and respectful of us, and of her, and treated her like a lady again - not like a piece of meat”. However, they don’t believe they received appropriate information from medical professionals about his mother’s diagnosis or treatment withdrawal options: “the doctors never sat us down and gave us a definitive answer our questions”. 

In 2013 the family supported an application from the NHS Trust to the Court of Protection for a declaration that it would be lawful and in his mother’s best interests to have artificial nutrition and hydration withdrawn. They say: “We all felt we were just preserving her for us, so that we could go and see mum. …. We knew she wouldn’t want to be like that…. And we were proud of us in a way that we had the guts to get up and speak for her.” The Court authorised withdrawal, and the care home “assisted us with everything we needed to keep her dignity and keep her comfortable”. A good palliative care package was agreed and although the family was initially very anxious about withdrawal (Olivia talks of nightmares that her mother-in-law might “suffer and die in agony of starvation”), in fact they believe that she was calm the whole time and died ‘with dignity”. After her death, they felt huge relief that she was finally at peace.

David and Olivia are planning to write Advance Decisions to ensure that they are never kept alive in such a condition themselves.
 

David and Olivia describe how they experienced being with David’s mother when she was in a ‘permanent vegetative state’.

David and Olivia describe how they experienced being with David’s mother when she was in a ‘permanent vegetative state’.

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Olivia: It wasn’t her anymore.

David: No.

Olivia: It was her body. It wasn’t her. But I suppose bizarrely, maybe as a daughter-in-law, out of respect for my mother-in-law, you know, I would – I treated her as I would have done if she would have been—

David: Well, yeah, yeah.

Olivia: her normal self.

David: But yeah, but – I suppose, you know, obviously no communication, disfigurement body wise, rolling of the eyes, things like that just – you know, it was just – it was a shell basically with a few functions going on inside it and everything else being automated. And whenever – like I say, whenever you were with her the machines were in [makes machine noises] you know, everything going on and bleeping and so on, so she – you know, she was there, in appearance you could still see her, and especially when she was asleep you could still see her. But when she woke or whatever—

Olivia: She had her eyes open.

David: Yeah, when she had her eyes open. She – you know, she wasn’t there. She wasn’t there. You’re – like I say, in the early days you were looking – I looked so hard, I wanted to find – I wanted to find I think in my head, I wanted to find something, and I would make – you know, not make anything up but you would look deep in her eyes. You know, no one else in the room, just holding her hand, you know, is there? Is there? And never, ever saw even a glimpse. So you sort of, you know, came to the conclusion that, you know, like I say, it – there was nothing – no coming back basically from what, what had happened. 
 

David’s mother collapsed with a stroke, which was to leave her in a vegetative state until her death several years later. The last time he was able to interact with his mother was just before she was put into an induced coma.

David’s mother collapsed with a stroke, which was to leave her in a vegetative state until her death several years later. The last time he was able to interact with his mother was just before she was put into an induced coma.

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And they were sat out the back garden, just a normal day, planning to go out for lunch I think. Mum was sat in a chair, said she’d felt a little bit off when she came round. And then [mother’s name], my sister just looked – said something to her and noticed the side of the face had gone. She tried to talk to her but she just talked a bit – quite gibberish really, nothing made sense. So [sister’s name] immediately said to my dad who was there, “We need to go to hospital, quick.” So they bundled her in the car, quick as they could. Got to hospital. I was called while they were on route. Got to the hospital car park, frantically looking for my dad’s car, found him, ran into the hospital and sort of made them aware that she was in the car and she needed quick assistance. And they came from the hospital straight out to us. My dad and myself lifted her out of the car, got her into a chair. And she went straight in. We tried to give details but we were just so confused and concerned. And basically then myself and my dad waited for her – well, waited for someone to come to us, which they did eventually within half an hour or so. And they said, “You better come in, because we’re going to have to put her to sleep basically.” 
 

David and Olivia never imagined that David’s mother might be ‘erased as a person’.

David and Olivia never imagined that David’s mother might be ‘erased as a person’.

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Olivia: And I think we didn’t maybe appreciate at the time how hard they were kind of battling to save her, we were just sat in a room for – well, all of – by the time they operated probably would have been tea time-ish, early evening on the Sunday. She was in theatre for quite a long time. We’d been in hospital all that day, all that night while she’d been in theatre and we hadn’t really been told anything at that point, just that she needed to get to theatre and it was serious. 

So what was the first point at which somebody told you what had happened and what might happen?

Olivia: We had a bit of a good cop, bad cop situation in intensive care, didn’t we?

David: Yeah, I would say – I suppose – well, I wouldn’t say no one came to us, but no one really – you know, they just said, “She’s out of theatre, she’s okay,” they wouldn’t – they didn’t sort of go any further into it. But one lady who was sort of looking – I can't remember, was she a nurse or was she a—

Olivia: She was a registrar. A more junior doctor.

David: Yeah. Well, she, she basically said, you know, “Your mum’s all right, she’s stable, she’s very poorly but...” and we were saying – well, our first, first things we wanted from her, you know, what’s she going to be like when she wakes up? Is she going to be this, is she going to be that? And she gave us sort of hope in a way of that she would be disabled, so we were like, right, well – you know, we were making plans afoot, we want to get her home, you know, she’s coming home. And that’s what we believed for the days onward from that. Obviously visiting and, you know, waiting for – anticipating her waking up. 

And then another junior doctor basically came – we were pestering them like mad, you know, “How’s she doing? How’s she doing?” And he sat us all in and he said, “What have they told you?” “Oh, she’ll be disabled.” He said, “She’ll be severely disabled, she’s – you know, this is what’s happened.” And we were all, “Don't say that, you know, how dare you say that? She’s all right, she’s going to come through. You know, we’re going to get her home.” But basically he was telling the truth. He was just telling us bluntly that she’s, you know, she’s not going to make this one really.

But we weren’t – we didn’t give up hope at that point, because she hadn’t woken up from the sedation she’d been under. But we did have, you know, we did have a lot of hope at that point and everyone – I knew she was damaged, you know, damaged beyond sort of coming back to anything that she would be, but I didn’t think this – the vegetative state, I didn’t think that.

Olivia: I think when somebody says to you severely disabled—

David: Yeah.

Olivia: a vegetative state is not the first thing—

David: I think like electric wheelchair and being able to, you know, you know, maybe not have any bodily function but still be there, you know, as a person. 
 

David and Olivia wonder why the doctors ‘brought her back’.

David and Olivia wonder why the doctors ‘brought her back’.

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David: And I think that – when they were operating and so on and later on, we thought, you know, why, why when you opened her head, why did you bring her back? You knew that she was going to be – she was never going to be anything but – excuse the pun – a vegetable. But they did bring her back. But then looking on the other side of I suppose anger, they brought her back because she was a young woman, she was a fit young lady and she deserved every chance. And she did. But unfortunately she didn’t have the strength to – or it was out of her – completely out of her control, but she couldn’t come back, you know. So—

Olivia: And there was a lot of times when we were quite angry about that, that they must have known.

David: Yeah, why—

Olivia: They operated twice.

David: Not just for her, but for us. You know, how dare they leave us like this, in limbo with someone that’s vegetated, rotting away on a bed and we had to watch that. They never gave us, you know, an option really. But we had to try, we had to try and that’s – you know—

David: And I think had we been given the option at the time—

Olivia: We would have—

David: we would have—

Olivia: seriously considered, even at that early – not early, early stage, but maybe a bit later on, we would have, you know, considered ending her life for her. And we all felt the same way, there was no one in the family who had any, you know, about what we went through at the end or even like I say not early, early on, but later on we were, you know, what can we do? There was nothing we could do, you know.
 

It is very challenging trying to get information when the patient themselves cannot give it to you, David and Olivia describe their experiences.

It is very challenging trying to get information when the patient themselves cannot give it to you, David and Olivia describe their experiences.

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Olivia: And it – for me, one of the big things, you know, looking back, was going back into hospital, like [Name] said, we have no communication with his mum, we can't speak to staff because there aren’t enough staff and they’re too busy, so we’re looking through hospital records of blood pressure and temperature and guessing and trying to read between the lines. And being told off for looking in the notes because they’re not our notes and we’re not allowed to look at them. So it was just a really frustrating – you know, you’re trying to come to terms with the situation, just an extremely difficult time. And I think for me, you know, if staff who are working, you know, maybe not on specialist wards who have, you know, patients, you know, with that minimum awareness to understand that families can't go in and have a chat with the patient and find out what’s happened that day, they have no clue what’s been going on. So just to have somebody to make the effort to speak to them and give them an update, even just to say, you know, they’ve been comfortable, they’ve had physio today. That’s all we wanted to know. Nothing else, just, you know, thirty seconds of, of what had happened or what had gone on. To not have that and to be trying to work things out for yourself was just impossible.

David: And then some nights you’d go away and she’d be full of sweat, you know, ragging around, chewing her teeth, and, you know, you’d sort of look back and, “See you, mum.” And then you’re leaving her there to God knows what all night. But then other times you’d leave her and she’d be sleeping and like, “Night, mum, see you tomorrow,” and it’d be fine. But obviously you go like this all the time. From visit to visit. Sometimes you get a scrap of information, sometimes you had nothing, you know, you’re – like I say, you were guessing and she was agitated and hadn’t been cleaned and – so yeah, like I say, we do keep coming back to it, because that was the most stressful horrible time. 

More stressful than her death?

David: Even, even more—

Olivia: By far.

David: Miles more stressful than the end. 

David: The worst thing was definitely hospital, and the just leaving her, the cleanliness issue was just, urgh. I had never come across anything like it in my life, it was disgusting.

Olivia: I think – and having no one to talk to on the ward. So going in, day in, day out.

David: You know on a ward there’s nurses flying everywhere, no one just to give you five minutes. And then she was put in this side room, there was – I wouldn’t say it was blood up the walls, but the walls were stained. You could see the room wasn’t that clean. And she, she – you’d walk in the room and it was, oh, the smell. And, you know, obviously my wife’s trying to clean and to do the best she can with limited resources.

Olivia: Yeah, don’t use dry shampoo on somebody who has a tracheotomy. Because they breathe it in and then [laughs]—

David: So yeah, just things like that that were – you know, mum would have hated, again. But, you know, you’re just doing the best you can with. And you shouldn’t – we shouldn’t have had to do that at all. 
 

They ended up feeling they had to nurse David’s mother themselves and become confrontational to defend her.

They ended up feeling they had to nurse David’s mother themselves and become confrontational to defend her.

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David: Oh, you know—

Family, it turns you into nurses.

David: Yeah, yeah, just became – became very aggressive going to the hospital, extremely aggressive. Like, you know, “Why’s it not been done?” You know, don’t take any – and it got to the point, if you don’t – if you didn’t shout, scream, cry at them, then nothing would happen, you know. So you had to really—

Olivia: He’d shout, I’d cry [laughs].

David: And my family, or our families, we’re not people that shout and scream and – you know, we’re not loud and – you know, we’re quite reserved really. And we’ve had to completely change our characters and become not nice people really, which was – you know, that’s how it had to be.

The end was a – was obviously a relief. For her and for us. But that hospital, yeah, was just horrendous. I’ll never forget it the rest of my life that was just – I’ve never been through anything worse, you know, than having to sit through that night in, night out, you know, and try and make the best of it. So yeah – so yeah. Sometimes now after all’s been done, you think, right, someone should answer to that, someone should – not pay for it, but, you know, that shouldn’t have happened. It shouldn’t have happened to us or her or anyone, you know. And obviously the purpose of what we’re doing today is to make sure it doesn’t hopefully again [laughs].
 

It was a huge relief for David and Olivia to finally get David’s mother out of hospital and into an excellent care home.

It was a huge relief for David and Olivia to finally get David’s mother out of hospital and into an excellent care home.

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David: So they put her into a side room, and all that time her hair was greasy, she stunk, her toenails were massively long. The bed was dirty most of the time. So we were then fighting the NHS staff, nurses, to keep her clean and get someone to – you know. So from going from this proud mother, mother-in-law, to being something you wouldn’t leave an animal like – so—

Olivia: I think for us that was one of the big things, being put on a general medical ward.

David: When she was as, you know, ill as she was.

Olivia: They didn’t have the staff to be able to care for her properly.

David: To care for her, yeah.

Olivia: So we had to go every day, you know, to wash her and—

David: And make sure she was clean. And just say, “Hey, this needs doing, hey, this needs doing.” And sometimes, you know, you’d even come into the room and she’d be choking like mad on phlegm on her lungs, and, and there was no one to give her suction. So you can imagine, you know, her eyes coming out of her head, sweating, it was just – so then whilst we were not only grieving her, but then fighting for her dignity as a woman to be, you know, to be kept clean, as just a basic thing. It was disgusting. So we’re very, very mad about that, that really sort of topped us for a while. And like I say, we just kept a vigil, someone went every single day. So yeah.

How long was she in the general ward?

Olivia: Six months.

And then to the care home?

Olivia: Mm-hmm. 

And was it better in the care home?

David: Yeah, yeah. The care home was just five star. It was like a beautiful hotel, a lovely room, staff, as soon as they got there they couldn’t believe the state she was in.

Olivia: Before she even went there they wanted to get their hands on her, just to wash her hair [laughs].

David: Oh it was – the sense of relief when she went there was just amazing, you know, just to, you know, to be able to go near her and not smell. But it was just – obviously it was just a – it was a terrible, terrible time in the whole thing. And then when she got to the care home she instantly – all this massive sweating and being erratic all the time, she seemed to just be a lot calmer, didn’t she, she slept for a long time, things like that. And that – we kind of thought, you know, maybe she knows, maybe she – you know, but – and then you sort of get to the care home and the carers are there, and, “Oh, your mum’s here, she’s had a lovely day, she’s been great and she’s been settled,” and she’s been this and she – you know, you’re getting this flood of information. So instantly, you know, you’re calmer.

But then the care home staff kind of obviously – you know, that’s their job, to care, they became quite attached to her, and would speak to us about her as if she was with us. Which obviously we’d decided months if not a year or so ago that she wasn’t with us and we knew that. And it was kind of a bit of a tag thing really [laughs], they would say things, “Oh right, right.” And then you’re thinking, no, no, she, she – you know, that doesn’t happen, she’s not—

So as though she was communicating?

David: Well, yeah, they would say things, you know, and they said about this crying and things like that, but by that time we kind of – we worked it out that she wasn’t there, you know. So – but yeah, the care home, they were just so good with her, and respectful of us, and of her, and treated her like a lady again. Not like a piece of meat on a, on a board, you know. So—

Olivia: Yeah, I think she actually – just after a few months of being there she looked younger somehow, they’d moisturise her face and—

David: Oh, her skin was brilliant.

Olivia: They’d cut her hair and she just looked—

David: She had a hair appointment every, you know, every couple of weeks. Which mum did anyway, so it was kind of – those little things just meant everything, you know, as a family as well. We could visit and—

Olivia: Not have to worry.

David: And a lot of our time visiting would be, you know, “Hiya mum.” Give her a kiss. Sit round the bed. But it would be almost like a counselling thing really. We’d all sit there and go, “How are you doing? How are you doing? You know, she’s been all right.” You know, so, probably as a family we probably never spent more time together [laughs] all round one bed. But yeah, you know, it just – well, it just calmed things down for a while, because we’d been through such an intense period, everyone could kind of put their head back on their shoulders a little bit and get on with things again. 
 

David and Olivia say it was hard to get a definitive answer about diagnosis, even years after the injury, and even though proper assessments eventually showed that David’s mother was in a permanent vegetative state.

David and Olivia say it was hard to get a definitive answer about diagnosis, even years after the injury, and even though proper assessments eventually showed that David’s mother was in a permanent vegetative state.

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David: The doctors never sat us down and ever, you know, gave us a definitive answer to our questions. It was a bit political. Everything was a grey area, “Oh, it could...” or, “Have you noticed anything?” Or, “Have you seen anything?” “No, no, no. Well, there’s your answer.” But they would never just give you a straight answer.

Why do you think that was?

David: I don’t know really. Maybe they just didn’t want to put themselves in a position where – I don’t know. I don’t know. But it just never seemed at – you asked them a straight question, you never got a straight answer.

Were you given a diagnosis, like vegetative or permanent vegetative state, by the doctors?

Olivia: No.

David: Well, only later on, wasn’t it, in the home. It was stated then that she was in a permanent vegetative state.

Olivia: Yeah.

David: But that was very, very late on in – that was when she’d been in the home for quite a while I think.

So some years?

David: Yeah, maybe.

Olivia: Yeah, it must have been.

David: Hmm. Because we received a letter basically which showed all the drugs that she was on, and then it had a statement saying that she was vegetative and that—

Olivia: She was in a persistent—

David: Persistent vegetative state, yeah. But like I say, we were so – you know, we were having – with sort of specialist doctors and consultants, we were asking, you know, definite questions, but never getting anything definite back. But I – you know, we knew the answers but we just wanted to hear it from them.

So what was it that you were asking specifically? What was it that you wanted to know?

David: Well, can she hear, can she feel, can she this, can she that. But like I say, that’ll be your question and then they ask, “Has she seen you? Does she follow you round the room? No. Well, there’s your answer,” kind of thing.

So there weren’t formal tests, like SMART tests being done, at that stage?

Olivia: No. That was only done in preparation for the court case.

David: That was only done at the end. But you would always try, you would always come in and kiss mum and she – her eyes would be over there. And then you would lay with her and try and look, you know, deep into her eyes or – you know, trying to find her. And she would just roll her eyes back in the back of her head, she could never – she could never focus for more than a – well, if she focused, she just looked your way [laughs]. But yeah, we used to—

Olivia: But that was difficult, because we tried for six months.
 

They felt ‘elated’ after their conversation with the expert rehabilitation consultant who assessed David’s mother - ‘for once in a blue moon, we knew what was going on’

They felt ‘elated’ after their conversation with the expert rehabilitation consultant who assessed David’s mother - ‘for once in a blue moon, we knew what was going on’

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Olivia: I remember after we had the first meeting with him, and we – you know, he was absolutely fantastic. And we said, “Why couldn’t other people have been like that?”

David: Hmm. Just talked to us straight, didn’t use fancy words or anything.  He just talked to us straight. He knew how we were feeling and took his time, he’s such a patient man, and just, you know – and we came out of there, you know, upset but elated that someone had spoken to us in a professional, down to earth manner. And we knew what was going on, you know, for once in a blue moon, you know, so we weren’t going home going, “What did he say? What did...” you know, we understood. Clearly and concisely, you know, that’s everything I think.  
 

David and his wife feel their love for one another has increased because of what they have been through and they are proud of how the family stuck together - as his mother would have wanted.

David and his wife feel their love for one another has increased because of what they have been through and they are proud of how the family stuck together - as his mother would have wanted.

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How has it changed you as a family, as a couple?

David: Well—

Olivia: We think we can survive anything.

David: Yeah, there’s—

Olivia: We’re indestructible now.

David: Yeah, I think it stalled our lives for a while, it stalled – obviously, you know, mum was the matriarch as we say. She led us. If mum said you’re coming to tea you’re coming to tea, there’s no yes or no or I’m not, I’m doing this. But as a unit we all stuck together and that’s been our strength throughout it really.

David: But yeah, like I said, anything that’s thrown at you now you kind of look, is it as bad as that? No. Nothing really daunts us now [laughs].

I’ve talked to other families who’ve been torn apart by this, and couples who’ve separated over this. I mean, the pressure is huge, isn't it?

David: Hmm. If anything we found more strength and respect, you know, for what [my wife] did for my mum is like, you know, unbelievable. You couldn’t, you couldn’t ask more and probably love each other more than we ever did, you know. We’ve lived it together and been through it, you know. 

Olivia: I think we’re lucky as well, we’ve got a lot of very supportive friends.

David: Yeah.

Olivia: We’ve got a lot of friends who are health professionals, so we could go to them and ask for advice and ask their opinion. And that was probably—

David: Like I say, it’s just self-educating really [laughs]. To get ourselves in the right position and get the right thing done, you know, sometimes. But, yeah, like I say, I think having good friends as well just to – just to be able to pour your heart out to them and cry to them and, and then, you know, get up and get back on with it, you know. So yeah, it’s been important, definitely. And to stick together as well. You know, that’s another thing Mum would have definitely wanted, was us to stick together as a family unit and carry on.
 

David and Olivia say the ‘best interests’ of David’s mother was not discussed. Meetings simply focused on delivering care, rather than reflecting on the purpose of interventions and what the patient herself would have wanted.

David and Olivia say the ‘best interests’ of David’s mother was not discussed. Meetings simply focused on delivering care, rather than reflecting on the purpose of interventions and what the patient herself would have wanted.

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Olivia: The only meeting that we had altogether was when she was getting ready to go from hospital to the care home. 

So that was after about six months?

Olivia: Yeah.

And what was that meeting about?

Olivia: I think they were just trying to establish the level of care that she would need, what equipment she’d need to leave the hospital with, her oxygen and those kinds of things. It was more I suppose practical things. 

So it wasn’t – it wouldn’t have been at that stage a question about what is in [Name of patient] best interest as a person, should she continue to receive treatment, should it be withdrawn?

David: No, no, that was never – never came up. 

Olivia: Had she been on another ward that was maybe more specialised, where we didn’t have to become so involved in her care so to speak, then maybe we’d have been concentrating more on the fact that she hadn’t recovered, that she wasn’t recovering, that she wasn’t going to recover. But because of the ward that she was on—

David: Yeah.

Olivia: actually the longer term issues—

David: Yeah.

Olivia: it was a day-by-day battle.

David: Our minds weren’t on anything in the future, it was every day, every hour, is she all right, is she clean, is she being cared for, who’s going next? 

David: So – but maybe with more information and better care at that point, maybe, you know, you would have—

Olivia: Because we had—

David: looked at the world differently.

Olivia: Yeah. Because we have looked back at that time, those six months in hospital and thought, they knew at that time, it’s more than six months after she’s had the stroke, that she’s not going to recover. Hasn’t got much chance of recovery, why did nobody ever mention when she had pneumonia, “Do you want us to treat her?” Or that not treating her was even an option. We thought that after it had happened but at the time I suppose there was so much going on.

David: It almost, almost felt like the job’s gone wrong, what do we do now? How do we get these off our back? That’s what it felt like, when we were having the meeting, where can we put her? And that’s what it felt – you know, it felt like that. Either through obviously being upset and being angry at the care that hadn’t been administered. So yeah, there was a lot flying around at that time. But that’s what it felt like, they were just; get her out of hospital, let’s wipe our hands of her. 

David: You know, that’s probably one thing throughout the whole five years was lack of communication. Second guessing at the future, at the state of mum, where she was going, when she was going. So yeah, to have some information early on, some definite set in stone, this is where we’re at, you know, and that would help – I think help you sort of forecast the future a little bit maybe, you know, for best interests for, you know, for all really, yeah, definitely. Definitely, yeah. I think we would have been ready for that, definitely.

Olivia: To know it was an option, even if we were to choose that option in the future, you know, we were years down the line, not even knowing that it was a possibility. 
 

David and Olivia describe the preparations put in place for withdrawing the feeding tube - they were reassured that there would be good palliative care.

David and Olivia describe the preparations put in place for withdrawing the feeding tube - they were reassured that there would be good palliative care.

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How did you feel when you were told that’s how it works?

David: I wouldn’t say, you know – obviously first thing in your mind is, you’re thinking of someone massively – wanting a drink, wanting food. But obviously mum never – was never conscious enough to ask for that, she was just automatically fed. And we were told and reassured by the people in the care home that she would suffer no pain. And they made sure and doubly sure that she was comfortable throughout the whole period. And we had a good relationship with the head carer, nurse, and she assured us of that. So I had no thought of her dying in agony or starving or anything like that.

Olivia: That was probably one of our first questions when they told us that’s the route we’d have to go down - would she suffer, would she know, would she feel anything. You know, how would that be managed, you know.

David: Yeah.

Olivia: And personally we had nightmares and things about being all shrivelled and like a skeleton and you assume the worst. But they reassured us that we wouldn’t see any change, which we didn’t. That we wouldn’t really notice any difference, that she wouldn’t really look any different. She wouldn’t feel anything, she wouldn’t be uncomfortable. And that as part of the court process, they have to have a care plan in place where should she show any signs of agitation or, or anything at all, that all the medication is there at the care home and can be administered straight away to make sure she’s as comfortable as possible. And, and I don’t know, but that being part of the legal process as well made it even – we knew then it had to happen, even if they said it was going to happen, it was legal, so therefore it was definitely going to happen. And that was very, that was very reassuring.

So did they – they told you what would happen? They described it to you before they withdrew the treatment?

David: Yeah, yeah. We had – we probably had a couple of meetings I should think at least. And yeah, they just went through everything quite clearly, concisely. And yeah, and then – well, we were expecting the date when they would tell – it was agreed. And things – I must admit, it did move quite fast. Whereas you thought, you know, because it been such a long process to get her, once we got there, I thought, you know, it’ll be a few weeks. But it was actually – you know, it was that week. Maybe not that, but it was very quick to, to, you know, to start us thinking, right, that’s it, that’s what we’ve decided, that’s where we’re going. And not that it was a bad thing, but it was a – obviously a bit of a shock to start with. But—

Olivia: But because that care plan was in place, everything was there, they knew who was going to take the tube out—

David: They were ready.

Olivia: when it was going to happen, what staff were going to be on shift. All the staff had to be in agreement that they were happy with what was happening, that they could, you know, work with [name of patient] during the time this was happening. There was obviously lots around confidentiality.

David: Hmm. Newspapers, etcetera.

Olivia: The staff had to sign agreements to say that they wouldn’t discuss any of what was happening in terms of the court case and things. So all that had been into place, so after the court case, you know—

David: Things moved quite quickly.

Olivia: Seemed to move quickly.
 

It was nice to see David’s mother without the tubes and she just looked calm. They are pleased that she is finally 'at peace'; they have no regrets.

It was nice to see David’s mother without the tubes and she just looked calm. They are pleased that she is finally 'at peace'; they have no regrets.

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And what was it like?

David: Well, when I first went to see her, when they’d taken the feed away in the morning, and the head nurse had said, you know, “Nothing’s going to happen, she’ll just be as she was for – you know, it could take up to a week.” 

Olivia: We asked – that was one of our other first questions, how long will it take.

David: How long, you know.

Olivia: Because maybe, you know, you’re thinking you’ve not had anything to drink then maybe it’s going to take a few days. And actually, we were told it could take up to two weeks. But they said given—

David: Her condition.

Olivia: her condition that it would probably take about a week to ten days. So that’s kind of what we were expecting. So the nursing staff had said for the first few days, you know, nothing’s going to change at all, you’re not going to notice any difference. And it was actually quite nice to see her without the feed tube in, because we’d not seen her face for five years. But she, you know, she was comfortable and—

David: Yeah, she was just like – just peaceful the whole time, never – yeah, just nice and calm all the time, yeah. But I think as the days went on her breathing shallowed a little bit. And then I think the nurse had called us in. So we kind of had a vigil round the bed thinking this is the last night. There was myself, my dad,  [my wife] and my sister. So yeah, we sat and watched her breathe for, I don’t know, five hours or something one night. And the nurse came in and just said, “Listen, there’s nothing going to happen again tonight.” So yeah, we all went away. And like I say, she was happy, she was nice and peaceful in the bed. And then I think it was the following morning, we were all going to work, thinking, you know, nothing’s going to happen for a few days yet. And then I think it was about nine o’clock, wasn’t it? My dad gave me a call and she’d passed. 

So we all rushed down, she was still warm when we got there. But yeah, she’d just gone. So – so yeah, we stayed for a little bit, probably a couple of hours, didn’t we? Obviously, you know, did our, did our grieving etcetera. And then, you know, like I say, it was a, a big sigh of relief as we walked out those doors that I’d never have to go in that place again. And, you know, I was kind of [laughs] this sounds horrible to say, free of it really, of the pain and the – and she was as well, you know.

Olivia: But we felt quite proud that we’d done it for her. 

David: Yeah. Yeah, definitely, definitely. And that she was at peace finally, she could rest, she could have a sleep now. So – but yeah, yeah, it was—

Olivia: And it felt like the right thing to do.

David: Hmm, oh, definitely.

Olivia: Once it was, it was over, there wasn’t any doubt at all.

David: There was no regret at all.

Olivia: No.

David: It was, it was definitely time. 
 

Other family and friends have said they would want artificial nutrition and hydration withdrawn themselves in these circumstances. David and Olivia feel they did the right thing by David's mother and that going through the court process ‘was the braver th

Other family and friends have said they would want artificial nutrition and hydration withdrawn themselves in these circumstances. David and Olivia feel they did the right thing by David's mother and that going through the court process ‘was the braver th

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Olivia: And the number of people in your family who then turned round and said, “If that was ever me, can you do that for me?”

David: Yeah. Hmm.

Olivia: And, you know, there wasn’t a single person who said, “No, I wouldn’t, I wouldn’t want that to happen, I’d want to continue to live in a vegetative state.”

David: Hmm.

Olivia: You know, or family or extended family, friends.

David: Hmm. Yeah, knew it was the right thing, yeah.

Olivia: Yeah, definitely.

David: But just – it sounds funny to talk about it [laughs] as if, as if you don’t care, that’s – you know, I listen to – I kind of listen [laughs] to myself and it sounds like you don’t care.

No, it doesn’t [Laughs].

David: But it – you know—

Olivia: But we did it because we care and we thought it was the braver thing to do.

David: Hmm.

Olivia: To go through the court process.

David: Than to leave her rotting in a bed to die in a – don’t know, maybe a painful way, I don’t know, but, you know, she – you know, she died in peace and with dignity, you know. Before things went even worse really.
 

David and Olivia found the idea of death from ‘starvation’ disturbing, but found in practice it seemed ‘peaceful’ and ‘dignified’ after the court approved removal of the feeding tube from David’s mother.

David and Olivia found the idea of death from ‘starvation’ disturbing, but found in practice it seemed ‘peaceful’ and ‘dignified’ after the court approved removal of the feeding tube from David’s mother.

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Olivia: Because we had nightmares and all – you know, we had nightmares and bad dreams about the most horrendous scenarios. And it was nothing—

David: No. It’s—

Olivia: That was thought it was going to – it was everything you hoped it would be and—

David: Yeah.

Olivia: …and nothing of any of those images or thoughts that you kind of—

David: And another thing as well when – I think I touched on it earlier – is when, you know, the breathing apparatus was going constantly and that was the noise of being around mum. And when it was turned off and when it was quiet, and when I want to give her a hug and tell her it was all right, it was perfect. It was peace. It was definite peace, you know. So, yeah, very, very, very important to have the right environment and everything in place to keep, you know, to keep everyone calm and cool and let it be, yeah, peaceful, dignified, you know, end really. What it should be, you know, so – so yeah, and that’s what we achieved, like I say.
 

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

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. 
 

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

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.
 

David and Olivia emphasise the importance of getting specialist advice.

David and Olivia emphasise the importance of getting specialist advice.

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What would you like to say to people who are in the position you were in five years ago? What do you think would be helpful for them to know?

Olivia: I’d say to ask to speak to a specialist.

David: Hmm.

Olivia: To be able to sit down and have a meeting and to be able to ask questions with somebody who knows about, you know, somebody who is likely to go into a persistent vegetative state after having, you know, what – a stroke in this case, a massive stroke, you know, what are the consequences of that? You know, to say for, you know, a junior-ish doctor to say to us, “She’s going to be severely disabled,” was not helpful at all.

David: Yeah.

Olivia: To us severely disabled doesn’t vegetative state, it means something completely different to what he was thinking and what he possibly knew.

David: Yeah, like you say, early on to have a proper communication and make sure you get it as well. Don't take no for an answer or second best, you want the best immediately really. And that can't always happen in the world we live in, but you’ve got to, you know, strive for the best I think. To get the best for that person that you’ve got left. And for the people that are around you as well, you know, for the family. Just to get through it [laughs] somehow, you know.

Olivia: We were never offered any formal counselling or support or anything like that. And, you know, we’re lucky in that we’ve got a close knit family and we all get on and we all supported each other. 
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