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Emma

Brief Outline: Emma’s seventy year old mother had a stroke, followed by a brain bleed. The intensive care consultant said there was nothing that could be done for her mother, but Emma could not accept this. A decision was made to insert a feeding tube and Emma’s mother survived another three years without ever regaining consciousness.
Background: Emma is married with two young adult children.

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When Emma’s mother was 70 she had a stroke, followed by a brain bleed. The intensive care consultant said there was nothing that could be done, but Emma could not accept this. She was determined that her mother must recover: “I just thought, ‘no, of course it can be fixed, there’s amazing things you can do … A man is on the moon, you know’.” She also feels there were some aspects of what doctors were telling her that she just did not want to take on board: “it was an ostrich thing I think, I didn’t want to know” and she also desperately wanted to make the “right and moral” decision, so felt compelled to insist that her mother’s life must be preserved.

A feeding tube was inserted and artificial nutrition and hydration initiated. This is a decision which seemed very minor at the time, but is now hugely significant in Emma’s eyes as it was this simple act that “meant the different between life and death”. Emma’s mother survived another three years without ever regaining consciousness. Emma does not think her mother had any awareness at all, and believes that she would not have wanted to be kept alive in such a state. However, she found it cathartic visiting and talking to her mother in the care home, and wonders whether her mother might have been able to hear something. 

The regular journey to visit her mother in the care home was a four hour round trip. Living that far away was a frustrating because: “I wanted to be at her beck and call … simple daily routines, washing her, her hair, flowers in her room - but over time the care is taken over and you become a family visitor”. However “the drive down and the return was a blessing. I had time to prepare before seeing her …and driving back, dissecting the thoughts I had. It was a thoughtful and sometimes a sad journey; assemble the muddle and walk through the front door of my house, calmer at least!”.

Although Emma values the process she has been through during this time, she also feels very confused and found the whole experience profoundly shocking and disempowering. She carries a heavy burden about her role in making decisions about her mother’s treatment. On the one hand: “I think as a family you still want to have some degree of ownership”, on the other hand she wishes that doctors had made it clear that they were the decision-makers. She feels that if the doctors had taken responsibility for refusing to provide life-prolonging treatment to her mother then she could have gone along with that. Looking back she also thinks “I probably would be braver now” and considers “quality of life as opposed to keeping that person alive at all costs”. She emphasises the importance of thinking about what the injured individual would want and confronting the fact that there is “no happy ending”.

Her mother eventually died when her body “closed down” and the feeding tube was withdrawn. Even though her death was a release and Emma was very thankful that it was over, she found the manner of her mother’s death very distressing. She compares her mother’s end-of-life to the way in which her father died – “he was in the garden, he had a stroke and he died, and that’s what should happen…my mother didn’t have that dignity”. 

Emma organised the funeral just as her mother would have wanted it. She was then able to move on with her life. She believe we need to be less fearful of death and that is it very important that doctors provide leadership in ensuring that the patient’s own wishes are factored into decision making about life-prolonging treatment.
 

Emma could not process what the clinicians were saying.

Emma could not process what the clinicians were saying.

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Can you remember what was said in intensive care beyond, “There’s nothing we can do for her?” 

To be honest it was quite a long time again and I [intake of breath] – I don’t think I was really – I think I was in a sort of whirlwind of shock actually. I don’t think I listened really to what was said. You know, there’s a sort of bleed, you know, and there was a – I mean, it was a very thorough process and the – I presume she would have been a neurosurgeon, the consultant, was very good and very matter of fact I seem to remember. But I was not – I don’t think I was really aware of what she was saying, you know, to be honest. Because it was so over my head. And I know that that is absolutely the correct process because, you know, you have to tell the family exactly what is happening. But I – you know, and all the details around that, and diagnosis and subsequent prognosis I suppose. 

But I wasn’t aware, I had absolutely no idea. And I don't think wanted to hear all that at the time, it was just – you – of course you can sort – of course – you know, after all that was said, you know, “yeah, absolutely, they’ll be fine, it will be all right.” [Laughs]. No [laughs]. And – but I don’t think that hit until – I don’t think that did hit until the, you know, “You have to move your mother, you know, you need to move her, these are the places that you need to look to.” That was, “All right, okay.” And, and then you have loads of questions and you don’t ever really ask them. I never really asked them. I had too many that I just – went round and round and round and round and round in my head that I never actually asked.

And I thought, that’s a fear, you know, I never asked any medical person, you just deal with the day. And it was – I suppose I possibly – in a very sort of low key, you know, “what’s going to happen,” but I never pursued it. You know, I think it’s a fear of [sighs] – it was an ostrich thing I think, I didn’t want to, I didn’t want to know the worst scenario I think. I just accepted it as what was going to happen. Had no idea of – that the – that it was going to be – her life was going to be this way and for the length of time that it was to be honest. And I wonder if you did know whether you would be any better than not knowing. I don’t know, I don’t know. It’s – I guess it depends on the person, you know, perhaps some people wish to know how long, you know, what is the level of – the quality of life of this person and people perhaps, you know, different want to know. I just – I didn’t pursue that at all.

So it was fear of—

Well, I think it was fear of knowing the worst case scenario. So if someone had said – and I don’t – possibly the medical profession can't answer that question, I don’t know. Someone – if the consultant had said, “Your mother is going to be in this state for the next three years, she will not be able to speak, she might be able to hear.” That – I don’t – that’s quite distressing, and I don’t know whether I would have wanted to know that. 
 

Emma’s relationship with her mother before her injury had been difficult. Although, seeing her mother in a vegetative state was distressing, Emma valued being able to visit her mother and talk to her.

Emma’s relationship with her mother before her injury had been difficult. Although, seeing her mother in a vegetative state was distressing, Emma valued being able to visit her mother and talk to her.

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Well, I wonder, I wonder – I mean, is it true that [laughs] – is it true that hearing is the last sense to go, I don’t know. Sometimes there was a flicker, sometimes there was a movement. I don’t know, I don’t know. But I did feel that perhaps for my own self that she heard what I said, and I did – I was able to say, “I love you.” I don’t like you, but I love you [laughs]. Which I still can say, you know, that it was – yes, it was – but it’s, it’s – yes, it was a – I think – oh, it’s a real difficult one actually, yeah, yeah, yes. Don't know. It – you carry a lot I think with this sort of process. And in terms of, you know, guilt, how, how – why, you know, how has this happened? Should I have done something? And certainly for me being an on – the only child, oh I should, I should have stopped being so pig headed and picked up the phone and it was too late. But those three years, although it was difficult, I sometimes absolutely dreaded going down to [the care home], opening the door and seeing this person in this bed. You know, it was – you know, sitting down there and talking through about, you know, nice things as well, not just my anger [laughs]. It was it was a process, and the process was good. You know, the difficulty of walking in and the huge amount of angst and then it was sort of washed over, and I would leave thinking, [sighs] “it’s okay, it’s okay, it’s okay.” Until the next time, you know, but... 

So tell me about that – what’s the source of angst? Tell me about …

It’s [sighs] it leaves you feeling very helpless I think. Because, I mean, [intake of breath] initially you want – you just want a solution. “Yes, of course you can fix it,” you know, that’s the thing, “of course you can. You can sort this out.” And I just thought, “No, of course it can be fixed, there’s amazing things you can do.” You know, “sit somebody up, it can, it can happen, you can sort it.” And I think – it’s the sort of helplessness when you see somebody that you think, oh, you know, ah, [sighs] sort of, “I want to shake you, you will – you know, do something,” you know. And it’s – it took quite a long time I think to realise actually that this was not going to – you know, mum was not going to get better, she was actually going to get progressively worse, or stabilise. And [sighs] it’s – I think there’s just nothing, absolutely nothing you can do. 

And also because of the – I suppose the invasive amount of, you know, pipes, you know, that kept – were keeping her alive, you know, it was difficult to [sighs] – you know, there was a sort of fear of touching somebody or, you know, it’s such an alien situation really. But you get used to it. It took time, but that was – you know, the awful thing, you just get used to it, okay, well, that’s fine, you know. Or, you know, you just walk into the room and, you know, there’s bags and, you know, and you just get used to that body being there and touching that person. Yeah, it’s the first, the first months are very difficult I think. Very difficult, you know. That can't – you can't go on. That person has got to do something. 

There’s – you know, they’re going to sit up in a minute and say, “Oh, it’s fine,” you know, or there’s going to be a miracle drug and, you know, that severe bleed is, you know, the blood will be, you know – I don’t know, sucked out of the head, some sort of crazy notions that you have. And yes, yeah. It’s a process. It was, it was – yeah, it wasn’t very nice actually to be honest, it was not very nice. Because it’s, yeah, you have no authority or control or say I think, which you can't, you know, as a person, and you have professionals, and you’re not, you’re just dealing with that person really. It’s – yeah, I yeah, it’s difficult. It was – yeah, it was difficult. 
 

Her mother always appeared calm and did not develop physical complications. Emma felt her mother looked ‘serene’ and liked visiting, although she was always left feeling ‘unfulfilled’.

Her mother always appeared calm and did not develop physical complications. Emma felt her mother looked ‘serene’ and liked visiting, although she was always left feeling ‘unfulfilled’.

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And she looked very serene and peaceful, I think that was the great thing. Through – all through that, I mean, absolutely flawless skin. And act – the other, the other sort of – it was sort of distressing in a way, but I mean, it was just watching a person grow old, but albeit gracefully. But when my mother went – had the stroke, she had dark hair, she was seventy, so it was grey I’m thinking ish. But she was very much a person that liked – you know, was not going to get grey. [Sighs], but that process of course, she became grey.

Simply because her hair grew.

Yes. And she was completely grey. And obviously because she had – you know, the food I suppose was minerals, her skin was absolutely flawless and no lines, but there was, there was this sort of aging process and nothing was done so, you know, her I suppose hormones or something, you know, she had this sort of facial hair. And yet sort of quite youthful, but this sort of very strange sort of aging. Very odd. It isn’t odd, but it’s odd watching it because you’re watching it in – as an onlooker. I think it was quite – but there was no – I didn’t see – I didn’t think – I mean, it was just peaceful, it was very strange, you know, and you think, “oh gosh, you can't – can't you do something to, you know” – but I used to buy clothes that she could wear. I don’t know whether that was ever – because I think she’s normally in a shift for sort of ease. But I felt it sort of almost cathartic to go and buy clothes that she would like. 

And I suspect – I never found them when she died actually, so [laughs] I think they were – probably thought her silly daughter. And I felt that was, you know, even if – can you, you know, put a bed jacket on or something, it was – that’s a bit of her rather than this person lying in a gown as it were. But I suppose that was – that’s quite distressing in a way, you sort of psyche yourself up when you go [sighs] – I mean, you sort of get used to it and you sort of don’t. But each time the expectation is not fulfilled really. You never fulfil that, because you never get out what you want to achieve at each meeting. Because you want, you want, you want, you want something and you never, you never achieve it. Although for me it was very, it was very – you know, I liked talking to her and telling her off and telling her how I felt. And I could do that because she didn’t say anything back to me. So that [laughs] – in that respect – but I always left, you know, wanting. You never – you go, psyche yourself up, do it, you know, chat, chat, chat. 

And there’s always a – you know, you never – that sense of fulfilment is never – you never get that. And it lessens and lessens and lessens. You still want it, because you still have that yearning hope, you know. And you never get it. And as the years go by it diminishes and diminishes. But you still – there is still something that makes you go back to visit that person. And for me, for my mother, there was still some pull, you know, still every single time there was something. I thought, yes, there will – there’ll always be – there never was really. 

A yearning hope for...?

I don’t know what it was. Something. I don’t know whether – you know, I don’t know. I don’t know what it was, but I always felt [sighs] I don’t know, I just – maybe next time something. And you know realistically it won't happen, but it’s what – I think it’s almost what pulls you to see that person as I don’t know what, but there is going – there is – I don’t know, I don’t know. I can't really explain it. It’s what pulled me back, this – whether it’s this sort – well, it’s unconditional love, as I said. But, you know, psyche yourself up, sit and chat and stroke, and there’s got to be something. Is she listening? Can she hear? You know, can she feel my, you know, my hands on her face, or is that – and you always feel unfulfilled. I always felt unfulfilled. And that is just because it can never be fulfilled. You can never have that little bit of something that you want. It is not possible.

And if I asked you to imagine it or fantasise about it, what would it be?

Some – something, some recognition I think. I think that’s all you want is something that that person would – just a lift of the finger. Or, you know, something that, yes, I know you’re there. That I think is – but I mean, that’s a great romantic notion. And you know that it simply can't happen. But you want that storybook. I wanted that storybook, I wanted that recognition that I – Kate knew I was there. I never got it because it pract – it just wasn’t ever going to happen. But I looked for that and that, that I think is very difficult, because you never, you never know. Oh, hearing is the last sense to go, is it? Or can you assimilate what you’re hearing, or is it just bluuuuu. You know, how does one know? So that’s great, you know, nurses – the nurses said, you know, “Hearing’s the last...” well, is it? How do you know? How do you know? And what is it? Are they hearing – you know, is Kate hearing Emma speaking? Realistically? You know, of course. 
 

Emma is very burdened by feeling she became the decision-maker in relation to her mother’s medical treatment.

Emma is very burdened by feeling she became the decision-maker in relation to her mother’s medical treatment.

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I – oh gosh. In terms of – yes, in terms of going through the; yes, you have to keep that person alive at all costs, you must, you must, you must, I would take that decision really, really carefully. I possibly wouldn’t make that decision. It might make me taper my thought into gosh, you know – but then [sighs] I’d want that person to die, I would not want to have to make that decision. But I – I think knowing what I know I would not want anybody to go through that particular process. I don’t – I wouldn’t want that actually. I wouldn’t want that. I don’t know what – how you would manifestly prevent that, but I – yeah, I would not want that, if it was absolutely known, I would not want that actually.

Because? 

I think it’s, I just –it’s just not – I think – well, speaking selfishly, for the relative, it’s unpleasant. It’s just not nice. And I think, you know, would that person really want to be in this situation? No, no. I don’t think anybody would want to have that life force taken from them, you know, in that way. And I – you know, that’s a huge decision – statement, sorry, to make. But I couldn’t – you know, that you have no control, you have no thought, you have no cognitive reason at all in any way, you are there. And I suppose it’s been called in a vegetative state for a reason. And yeah, I would, I would not – personally I would not want to do that. I would – you know, and I’ve said to all my family, you know, push the button because I do not want to be in that state. And as a life force I just feel that – and I don’t know, you know, it’s putting that burden on – upon somebody. But – and it’s a burden. And, and, and the whole process is a burden which you never, ever let go. You can never – however – you know, ten years down the line you never, ever lose that burden. It is literally on your shoulder and you never, ever, ever lose it. You never – time is a great healer is a good old adage, it is. But you never lose that. You never lose that person in your mind because you always remember that person and that body wired, and that your rationale for making the decision, for whether it’s right or wrong, and you never – it’s a burden that you have to carry. 

And it – you know, it’s not – you know, there are – people have a lot more difficult situations. But it is an entity in your life and it never goes. You don’t think about it daily, but it is – not daily but perhaps every other day, there’s something that you – I find that there’s something there that – you know, I don’t know what it is, a comment, a throwaway comment from somebody, a flash on the TV or something. Or, I don’t know. Or something absurd that you sort of – and you – oh gosh, crikey, and you never lose it. I don’t think you ever lose that burden. I think it’s a burden, it’s something you have and it’s a burden. 
 

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

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

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Would you want a feeding tube in for yourself? 

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

But should I have a stroke at fifty…

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

Emma reflects on the decision to insert a feeding tube into her severely brain injured mother. This kept her alive in a vegetative state for several years.

Emma reflects on the decision to insert a feeding tube into her severely brain injured mother. This kept her alive in a vegetative state for several years.

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And what technically did that involve, the decision? What was the intervention they needed to make in order to keep her alive?

The – it was putting in the feed I think through her stomach. I – it’s call – I don’t know the term, but it’s a – and I [sighs] – it was that was – yes, I presumed that was that. Which I didn’t really realise actually, that that was, you know, you know, the significant, you know, [sighs] you know, I don’t know what the word is – but – or the significance of that if you like. Because that in effect kept her alive. She had – I – no, her breathing – yes, I presume it was the nutrients through the stomach, and various pipes, you know, obviously. [Intake of breath] And that was, that was, you know, I – you know, is that, is that all really? Gosh. But, I mean, it wasn’t all because it was major surgery for somebody that you’ve – that’s, you know – and the problems that happened with that, you know. Has to be removed occasionally, you know, it’s absolutely horrid really. 

And I thought, oh, is that it? You’re not going to do heart surgery [laughs] or – you know, I thought this is going to be a sort of major – I didn’t realise that that was that, that her breathing was fine but in order to keep her alive she had to have this huge intervention, you know. Which perhaps it isn’t huge, but to me, you know, that’s – it was the food to sustain her. Not beeping things and hearts and [laughs] it was, it was, you know, crikey, really? And, you know, it – you know, it’s a major operation I presume, but – or not. But I, I, you know, I was really sort of surprised actually. That – but it, it’s major because that is life or death. That, you know, requirement of nutrient is life or death, remove that, that person will not live for more than a short time.
 

She could not contemplate withdrawing artificial nutrition and hydration as she saw that as an active decision to make her mother die. However, Emma did agree to withdrawing stroke medication.

She could not contemplate withdrawing artificial nutrition and hydration as she saw that as an active decision to make her mother die. However, Emma did agree to withdrawing stroke medication.

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I was probably hoping in the back of my mind, that she would take the initiative, she would have a heart attack and die. And that would be the resolution. Not that I would have to – you know, this – or she would have another – I think it was mentioned that she might have – after we’d withdrawn the stroke – anti stroke tablets, my thought was, she’ll die. She’ll have another severe bleed or – I’m not even sure how it works. I thought she’d die. That’s fine, that will happen and she will die, it’ll be fine.
 
And her dying from a stroke or a heart attack would be better because—
 
It was her decision, not mine [laughs]. It was, you know, the body’s saying. Not me having to say, make this blasted decision all the time. Her body giving up because it was just giving up, it had said, “I’ve had enough of life, I’ve had enough of living like this,” that’s it. 
 

If clinicians had asked Emma "What would Kate want" she feels different decisions might have been possible, and it would have relieved her of responsibility.

If clinicians had asked Emma "What would Kate want" she feels different decisions might have been possible, and it would have relieved her of responsibility.

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Yes, I think it would, yes, I think it would. Yes, I think it would. Yeah, I [laughs] – simply by going back – because really you just don’t want to make them [the decisions]. You just don’t want to. And really, you know, you do want somebody – and actually having, having been asked that really vital question actually, “what would this person, you know, what would this person have wanted.” You know, that is a really vital question actually. Because you’re, you’re including that person who can't be included. And you’re actually thinking about that person. 

Because really as much as you are thinking about – what you think is – you know, putting that – turning that around and saying, “what would this person have wanted?” I think probably would have an impact on your thought. Because I think your knee jerk reaction is to preserve life, you know, what if, what if, what if. Certainly for me that was how I felt. Perhaps if someone had said, “What would Kate have felt? Would she want...” you know, I would have, I would have drawn a breath I think. My knee jerk would not have been so reactive. I think I would have thought, “oh, gosh, no, she wouldn’t. She wouldn’t.” And yeah, that might have had a much more directed approach actually.  

It might have allowed for non-sustaining life?

Yes, I think it’s possible, yeah.
 

Emma’s mother died after her body ‘shut down’ and the feeding tube was no longer effective – she found her mother’s ‘withering away’ very distressing.

Emma’s mother died after her body ‘shut down’ and the feeding tube was no longer effective – she found her mother’s ‘withering away’ very distressing.

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So did your mother have any kind of – that, that decision and the tube coming out, did she have other infections at that point or—

I – yes, I think she had. I think she had – I don’t remember exactly. I think there was a point that the PEG was just not – couldn’t be used, I can't remember exactly what, I think it was just [intake of breath] – I don’t know what had – I don’t, I don’t think it was very good.

And did they write to you, ring you, how did—

Ring, ring.

Right.

Yeah.

And can you remember what they sort of said to you? 

I think the doctor was just very nice and just said I – you know, this – I think – I said before, he seemed to know that – so for whatever reason, I think he would go – I think he went once a week to check. I think that’s the standard sort of protocol, or once a week, or I can't remember. But, you know, regularly. And I think this was the sort of last – I know there’d been problems with the PEG and I think this was the last issue. She’d had terrible sort of infections I think, and they’d tried – I think had they tried to put it in another place or – I can't remember what had happened, but I think whatever, this was the last resort. 

And I think also – he was very nice, he was a very gentle man, and had said, “This is, you know, this is not going to be long.” And I think it wasn’t just the PEG, I think the body had – however that happens, but I’m saying in my layman’s way that it was just shutting down I suppose and, you know, couldn’t take anymore. And he – yeah, he was a very, very nice chap actually. And just sort of said, “I think it will be...” you know, I think it – she was – it was longer, she lived longer than he said. Stubborn to the end. But, yes, that was – you know, that was not nice I have to say, yeah, I didn’t – that was not pleasant. You, you know, I wished there – I don’t believe in euthanasia but I [laughs] you know, you do think, gosh, crikey, in this situation – that’s not good. That’s not good. 

What was not good about it?

I think it was just that dying because of – you know, just your last semblance of life is withdrawn from you and you’re just a piece of meat on the table withering away. And literally withering away, it is really quite an unpleasant experience. Not nice at all.

So you saw her become thinner?

Hmm. Yes, it’s not, not nice.

And did her face change?

Hmm. Yes. Yeah. Yeah. 

So you don’t believe in euthanasia, but in this situation maybe for her it would have been kind or—

Well, I – yeah, kinder I think. You know, it’s – there, there comes that point I think when you actually realise that person isn’t that person anymore. That this person – it’s just a body, just a body on a slab, almost. The bed could have been a just there, as much as serene and peaceful, but this sort of [intake of breath] sucking of life was just awful. I went twice to see her and the first week obviously wasn’t so bad, the second week was not particularly good. But – yeah. Yeah, that was not – and that’s the only thing, you think, oh please, you know, deal with this, because that should – that’s not nice, it isn’t nice. And it’s just not – it’s not nice for me but, you know, we don’t know, do we? We don’t know all the answers. We don’t know the feelings. As much as we think, you know – you hope that the body just is internalising and that’s it, it’s non functional, knows no pain and there is nothing. One, one hopes that. But I think that situation is not –I wish there could be something that could stop that. I don’t know what either. 

So it left you with memories of what she’d been like at the end that were difficult?

It sort of – that – no, I chose – that – I’ve only just sort of thought about that now, but I don’t actually think about that anymore. That’s not some – I think that was – perhaps the body’s very clever and – I think also it’s because that wasn’t her. I didn’t – as much as for three years that wasn’t her [laughs] but there was, there was some, some resonance of my mother, because she was alive. And I think I didn’t see that as my mother, you know, that – those last two days. I didn’t see that last bit as Kate. I did not, it was just a person going through this event. And I didn’t – you know, I did not think, “Oh that’s mum.” That was –I didn’t think that. Because it just takes that away. I think maybe your mind just says, well, we’re not going down that bit. We’ll do that nice bit there. Perhaps it’s a very good caveat, you know, that’s fine, you’ve got the bricks here, you do that bit, and we’ve got you behind.
 

Emma was pleased to be able to organise a lovely funeral for her mother, and then felt her own life could start again.

Emma was pleased to be able to organise a lovely funeral for her mother, and then felt her own life could start again.

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The funeral, that was – it was – the funeral was just an addition. I – because I’d said my goodbyes it was – I felt that that’s what she would have wanted. And, and I suppose for everybody, her sister, you know, my children, me, it was what is needed as that finality, that – literally that full stop. That celebration of that life. And – which we did. We didn’t talk about the last three years. People spoke about her being this person here and that’s – and that was – yes, the funeral was a lovely funeral actually. And we went back with a group of us and had a big lunch which I knew she would have liked. And I have, I have goodness comes from that. I wasn’t really sad. It was just, I want to do this, she would have wanted this, so I must have this. It is important, she will want this here, she will want someone to read this, she will want people to wear black, she will want people to have formality. She will want this blooming reading, she’ll want this [laughs] blinking hymn, [laughs] you know, I knew exactly what she would want, and the formality and the structure of it. And she had that. And, and it was, it was a celebration of her life. The readings were beautiful and about her and fantastic, positive. And it was good. It was good. I wouldn’t go so far as to say it was a knees up, but we had a jolly good lunch after. And, you know, it was, you know, Kate, you old bag, but it was – that was – and the process, it was the process. And that was that. And the day after my life started sort of again. 
 

Emma says it is important to try to make sure that the patient’s voice is heard.

Emma says it is important to try to make sure that the patient’s voice is heard.

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Well, I mean, I – equally I think it’s – I think it is about for them not being fearful of what the relatives are thinking. I – it – if there can be a way that it is for every relative that is in this terrible situation, that you can have a professional, a medical professional, that sits down and says, “This is this, this has happened. The result is not going to be good. This is your child, your mother, your father, your sister, your brother, this is bad. It’s going to be this if you progress this course of action.” And that’s a hard thing. But I think if – I think just talking really and being honest. And I think it’s accepting that people will not like what they want to hear, without any question, because no one wants to hear that. Because all you want is the best outcome. [Intake of breath] And I – you know, I guess it’s about being Bruce Lee frank actually. And I know it’s awful because you know that person doesn’t want to hear that, that person does not – that you’re talking to, does not want to hear that. But it’s then going away and that person to come back again and say, “Gosh...” 

You know, and I think also, it’s, you know, the elephant in the room is your loved one. And that loved one has got to be Kate or Jane or Suzy, what would Suzy think, you know, including that person. Because one doesn’t because they can't. So it’s not a real message. I think I – you know, it’s really – it’s about honesty on both sides. One on the clear medical prognosis and for a relative, a clear prospect of that isn’t – this is the situation. And this is not going to be good, this is not going to be nice, it’s not going to be, you know, a happy ending.
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