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Family Experiences of Vegetative and Minimally Conscious States

Artificial nutrition and hydration

Artificial (or ‘Clinically assisted’) nutrition and hydration refers to providing nutrients and fluid to a patient who cannot swallow.

Treatment is provided by a tube into the patient’s stomach. In the early stages after injury a tube is usually inserted into the patient’s stomach through their nose and down their throat (a nasogastric tube) but for long-term treatment, there is usually an operation to enables the tube to go directly through the stomach wall. This may be referred to as a PEG (Percutaneous Endoscopic Gastronomy) or RiG (Radiologically Inserted Gastrostomy). 

Although some people see providing artificial nutrition and hydration as basic care, it is classed as a medical treatment in law, and, like any other treatment, should be provided only if it is in the patient’s best interests.

It is often advised in the initial stage to maintain a severely brain injured patient’s condition while they are properly assessed – but sometimes doctors decide that the injury is so bad that treatment is futile, or families decide that there is already sufficient information to know that the person would not want a feeding tube. If it is agreed that a feeding tube is in the patient’s best interests at the start this may be a ‘time-limited’ trial and in any case, like any other treatment, there should be a regular re-assessment to explore whether continuing or discontinuing this intervention is in the patient’s best interests. This should look closely at whether or not the patient themselves would have agreed to this treatment in the circumstances.

Guidelines produced by the British Medical Association, General Medical Council and Royal College of Physicians (2017) underline the duty of treating clinicians to:
“Hold formal, documented, best interests meetings with those who care for the patient and are interested in his or her welfare. Such meetings are both to share clinical information with them about the patient’s diagnosis and prognosis and to elicit information about the patient’s values, wishes, feelings and beliefs in order to decide whether it would be in the patient’s best interests to continue to provide CANH [Clinically Assisted Nutrition and Hydration]. Accurate information should be provided about how death following CANH-withdrawal would be managed.” [BMA, GMC, RCP, 2017 ‘Decisions to withdraw clinically-assisted nutrition and hydration (CANH) from patients in permanent vegetative state (PVS) or minimally conscious state (MCS) following sudden-onset profound brain injury: Interim guidance for health professionals in England and Wales]

In some cases withdrawing artificial nutrition and hydration [ANH] from a patient in a vegetative or minimally conscious state may require an application to the Court of Protection. The circumstances under which an application to court needs to be made (or not) are subject to debate and change. During 2017 judges stated in several court cases that coming to court was not always necessary, for example if a robust best interests procedure had been followed and everyone agreed on the patient’s best interests. On the 1st of December 2017 a Court of Protection Practice Direction (PD9E) which had stated that cases should go to court was deleted and professional guidelines which rely on this practice direction are now out of date.

The interim guidance from the BMA, GMC and RCP published in December 2017 states that:
 “Our understanding is that, provided existing professional clinical guidance has been followed and all relevant parties agree that it is not in the patient’s best interests to continue such treatment, good clinical practice does not require that court approval is sought before CANH can lawfully be withdrawn from patients in PVS and MCS."

The guidelines outline proper best interests procedures and state that if these have been followed:
"If all parties agree that it is not in the patient’s best interests to continue with CANH, it should be discontinued as soon as is reasonably practicable in the circumstances of the case."

These guidelines also state that:
"Until and unless the matter is definitively settled by the Supreme Court, NHS Trusts/CCGs/Health Boards may well wish to seek legal advice as to whether an application is required in any particular case, bearing in mind the twin imperatives of (a) ensuring that patients lacking capacity are treated in accordance with their best interests and (b) that these organisations and their employees are only asked to make a decision concerning the withdrawal of CANH which is clearly lawful and appropriate in the circumstances of an individual case."
 

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.
Decisions about artificial nutrition and hydration [ANH] generate strong feelings. There may be concerns about providing it at all shortly after catastrophic injuries, with some people believing that it would be better not to extend the patient’s life at that point. There are often strong views later about whether or not ANH should be withdrawn from patients who have received it, or whether it is in the patient’s best interests to replace feeding tubes that have dropped out, or perished. A range of views was represented by those we interviewed.
  • Some people we spoke to were opposed to withdrawing any life-prolonging treatments from their relative because they believed the person would have wanted to be kept alive. 
  • Some would consider withdrawing such treatments in the future, but felt it was too early to contemplate such decisions.
  • Others thought that many (potentially) life-prolonging treatments should be withdrawn (e.g. ventilation) but felt strongly that it would never be acceptable to withdraw ANH, even though they believed that their relative would not want to be alive.
  • However some people we spoke to had come to view that withdrawal of ANH was the ‘least worst’ option for their relative.
 

Mark’s brother has been unresponsive for 3 years, but Mark believes it is too early to contemplate withdrawing ANH.

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Mark: Not that easily but, you know, and it shouldn’t be that easy either. But it is one possible route. 

Could you ever imagine circumstances under which you would think that was the right possible route?

Mark: If he deteriorated. I think his level of existence is probably about as low as I could, I could think as being – I won't say reasonable, it’s not reasonable at all, tenable. If it was decided he was completely vegetative and his physical condition started to go downhill – I mean, his organs are fine, you know, they do regular tests on his liver and various other things, and check his food tolerance and all the other bits and pieces. So to all intents and purposes he’s a fully functioning human being as far as I’m concerned. Other than there’s some connection missing between here and here that prevents him doing anything about anything. And nobody yet has said to me that that’s permanent or that that isn’t just suddenly going to open up, reroute or whatever it does in those cases. So I’m not saying that I would never consider it, but I just don’t think it’s the right thing to do for him at the minute. 

Okay. So you’re not saying you would never consider it. Because some people are really horrified by that, they think it’s cruel, you wouldn’t do it to a dog, it’s—

Mark: No, no, well—

Withdrawing food and—

Mark: I can see that, I can see that. But then—

Parents especially.

Mark: Possibly other people would say they wouldn’t do to their dog what I’ve already allowed to be done with [my brother] I guess. If one is being blunt about it. And I don’t know where that line is, I really don’t. And I don’t think it stays in the same place anyway, I think as time goes on it changes. I think as his condition varies – you know, he is actually, in spite of what’s happened at Christmas relatively fit looking compared with how he was, you know, was from the accident. He’s put on – put weight back on since the accident. His colour is a lot better, isn’t it?

Helen: Hmm.

Mark: He actually – apart from the two big depressions in his head, there is no external evidence of there being any kind of issue at all with him really. And as I say, he breathes fine, he’s got a reasonable swallow, he can cough up – when he’s got a lung infection, most of that he can deal with. They have to provide some suction support, but most of it he ejects, he’s got a strong enough cough to get shot of it. So all of that to me means that he is kind of still relatively fit as an individual. Now if he went downhill from there and it – he didn’t recover from that then, then I would feel possibly differently about that. I wouldn’t want him to be permanently with a lung infection for instance, because that’s a horrible, horrible thing. 
 

Mark and Helen view withdrawing ANH as very different from switching off a ‘life support machine’ such as a ventilator.

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Mark: And the, consultant at [the] specialist neuro hospital said, that really it wasn’t in his opinion in [my brother]’s interest to carry out any major operations on him. Which I can understand and I, I don’t entirely disagree with. But it’s – but it was – but the replacing his rig, that isn’t what I would call a major operation.

So major would be what, if he got cancer or something?

Mark: And that is mainten – it’s kind of maintenance, isn’t it? If it was – if he was a car, and he’s not a car, but if he was, you know, if your water pump goes you replace your water pump, don’t you, and if he needs a rig to feed him then replacing that is part of his kind of care maintenance if you like. Which is why we’d agreed to the super pubic catheter because that was a better way of managing his circumstances. And I could – and he went in for an op for that and came out fine. So, I, at the moment think that, you know, that’s the kind of thing that should be done. It – on a normal week without – he doesn’t need any kind of intervention other care. He doesn’t, he doesn’t – he can breathe fine – he’s, he doesn’t need any technical support with that at all. 

So that’s what you meant when you said we’re not keeping him alive, he’s—

Helen: Yes, there isn’t a machine—

There’s nothing to switch off.
Some interviewees thought that considering withdrawing artificial nutrition and hydration from the person they loved, could be an act of caring and courage.
 

Kevin felt that there was more love in withdrawing his son’s feeding tube than in letting him be sustained indefinitely in a permanent vegetative state.

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I suppose, as far as I was concerned, Matthew was gone already anyway, regardless of stopping the feeding. You know, we had lost him totally, you know. So, as far as I was concerned, Matthew was gone already. This was - just putting an end to something that—Well, you know, just something that— I wouldn’t say not, we didn’t, I didn’t love him anymore or anything like that, but I think the love was what we did. To terminate feeding Matthew, I think there was more love in that than letting him carry on in the state he was, you know, forever more.
 

Miggy feels it was courageous to take responsibility and decide to ask if the feeding tube could be withdrawn

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Miggy: But we had a regime where no antibiotics and just hoping that nature would take its course. But when nature doesn’t take its course, I think it’s quite brave to say, “Well actually, let’s be responsible about this and withdraw nutrition and hydration,” and take the responsibility and take the decision. And I’m, I feel very happy that we took that decision. We had the courage to take that decision and didn’t just let things carry on kind of hoping, fingers crossed, for an infection. But we had the courage to actually make a decision, with the court’s approval, that we should withdraw.
Some interviewees were horrified at the idea of withdrawing ANH and anticipated that it would lead to a ‘difficult death' (although see ‘Death and Dying’ for family reports of such deaths - which suggest this is not necessarily the case).
Withdrawing ANH was also seen as a deliberate act causing death. It was contrasted with withdrawing other kinds of treatment since this might not (and often did not) lead to the patient’s death.

By contrast other people think of tube feeding as an active intervention, imposing something on a person which might get in the way of the natural end-of-life process.
 

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. 
 

Cathy originally thought her brother continued to survive, because at some level he wanted to be alive. She now sees this rather differently.

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Was there a point when he was fighting infections you thought, he’s a fighter, he wants to live, early on?

Oh definitely, yeah. Which is another interesting thing actually, I’d never thought about this before, but it’s about nutrition, hydration. So apparently when people, you know like, apparently when people sort of slightly give up on life and then die, that’s because they stop eating. You know, so like old people, or people who have been widowed, and then, it’s because they stop eating. So obviously we’re pumping all this fabulous nutritious food into him, because you think don’t you, because again the bit of you that has this idea of a soul or a brain, just thinks, well at some level he must want to stay alive if he’s staying alive. Whereas actually, the reason why people can just turn their face to the wall and decide to die is because they stop eating. 
Interviewees were often concerned that, even with a confirmed vegetative diagnosis, it was possible that their relative would experience pain and suffering from a protracted death following treatment withdrawal. But some were reassured when they gained extra information, or witnessed what happened when a feeding tube was withdrawn. Fern describes how her partner has repeatedly been close to death from a series of cardiac arrests and infections and she would now would like him to be allowed to die, including if necessary the withdrawal of his feeding tube.

“If he got very ill, which he will do again, he will that’s inevitable. I would support the decision at this point to remove it and I would be very emotional and, yes I would be up there and I would wait with him. It can take a week I’ve heard, so you know. It sometimes takes two. People just, you know, it does take... but I know he’s going to go. There’s not a miracle coming for this, this is the way it’s going to go. And I support that, because I believe that’s what he wants. I feel he’s had enough”. 

Helen, who at first rejected the idea of withdrawal, came to think it was the best option.
 

Helen, like some other people we spoke to, initially resisted the idea of withdrawing artificial nutrition and hydration from her son – but came to reassess this.

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And when you first heard about the possibility of withdrawing artificial nutrition and hydration, how did that – what was your reaction to that as a first idea, when you first—

I thought that might be fine for other people but there’s no way I would even consider that. And then about twelve months later I’d seen him through several nightmare urinary tract infections. I’d watched him lose weight. I’d watched his skin start to break down. I’d seen him in pain. I’d seen the splints that he’d got on his hands start to cut into his wrists. And just the general wear and tear of intensive and invasive nursing practice began to tell on his overall physical health. And it was at that point I started to reassess. His father started to reassess the situation. And so did his brother and sister. 
We interviewed several people who had initiated, or gone along with, court proceedings to consider withdrawing ANH from their relative. In all cases a diagnosis of permanent vegetative state was confirmed and ANH was withdrawn. Although each of these interviewees saw this option as the best course of action in the circumstances within the law, they also felt that there should have been another way of allowing the person to die.
 

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

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

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

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

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

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

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

Cathy fought to ensure her brother’s feeding tube was withdrawn, but she also says prisoners on death row get a better death.

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The specific thing I think is that I don't think I should have – I don't think me or my family should have had to feel responsible for doing it. I also don't think it should have taken so long. I think with better advice it wouldn’t have taken so long. But even with that, I don't think we should have felt responsible for doing it, and then I really think – I get, I get the legal thing around it’s a withdrawal of a treatment, but it’s just so – isn't it just so awful? We do stuff to human beings that we wouldn’t do to a dog, that just can't be right, can it? There’s got to be some – given that it’s so rare as well, you would think that – I understand about not establishing precedents, but it’s not like it happens a lot. And with all the thing of the court case, I just think, oh, I just think it’s– it seems to me to be a pinnacle of like not civilisation. So we actually – I know not in this country, but globally we will execute people by lethal injection but globally when we’ve decided somebody in that situation needs to die, we have to starve them to death instead. I mean, that’s just got to be wrong, hasn’t it? 

And you feel as well, you feel that that’s [sighs] – the reason why that still happens – and it will be because people in suits – probably mainly men in suits, will sit in dusty rooms and say, “Oh, we don't want to establish precedent about this.” And nobody actually thinks about what that is like. Because I think anybody that’s had to live thirteen days of knowing that your [speaks tearfully] brother’s internal organs are breaking down and waiting for him to die, I think anybody that had lived through that would find a way to get over those little legal hurdles so that other people didn’t have to live through that situation. And I think if people had experienced that, that’s what they’d do. 
Whether or not families would like to see a change in the law they often observed that death from ANH withdrawal was not as bad as they had anticipated. Indeed, It often seemed peaceful. It was noticeable when we compared accounts of different ways in which patients had died that this seemed to be 'better' than some of the other ways of dying (see ‘Death and Dying’). David and Olivia are clear that David’s mother died painlessly and peacefully after the withdrawal of her feeding tube. They are glad they had the courage for the court case and to prevent her dying a worse death from lying ‘rotting in a bed’.
 

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.

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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

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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.

​Last reviewed December 2017.
​Last updated December 2017.
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