Sonia

Brief Outline: Sonia’s mother had a devastating stroke in 2005 (when she was in her 60’s) - she appeared initially to make some recovery but a few days later had major swelling of the brain. Clinicians rang her family telling them her life was in danger and a decision was made to do a craniotomy. An early bout of pneumonia was aggressively treated, but when pneumonia developed again the decision was made to keep Sonia’s mother comfortable but not treat with antibiotics and her mother died in 2007.

Background: Sonia is 45.

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Sonia’s mother had a devastating stroke in 2005 (when she was in her 60’s). She appeared initially to make some recovery but a few days later had major swelling of the brain. Clinicians rang her family telling them her life was in danger and a decision was made to do a craniotomy. After the operation she appeared to have significantly more brain damage but again appeared to have potential for improvement - she appeared confused but was able to say some words. She could not swallow and had a catheter and tracheostomy and feeding tube and needed manual evacuation of her bowels. After a few weeks a family case meeting was called and the family were informed that the rate of progress was too slow so no more physiotherapy would be provided. Her mother would be discharged into a high dependency care home. The family felt her mother’s specialist medical needs were so high she would be at risk outside the hospital setting so the family fought for her mother to stay in hospital. 

An early bout of pneumonia was aggressively treated, but when pneumonia developed again the decision was made to keep Sonia’s mother comfortable but not treat with antibiotics and her mother died. Her mother’s eventual death from untreated pneumonia was not a ‘good’ death and Sonia compares what happened to her mother to what happened to another relative who had had a massive stroke a year earlier, and had been allowed to die within a week with treatment not offered.

Sonia and her mother had just spoken on the phone, before her mother had a massive stroke - it was a huge shock to see her in intensive care.

And when we got to the hospital in the afternoon mum was in intensive care and wasn’t conscious. And had, we were told, had a bleeding stroke because she had a sort of untreatable very variable, very high blood pressure. But she’d been taking soluble aspirin for this, which meant that the bleed was that much worse, so that it had kind of spread all over the brain. And they weren’t really sure what the prognosis was but they were going to kind of maintain her in a state for that period. And it was very, very kind of ICTU, sort of situation with tubes and people and, you know, kind of slightly bizarre. But quite, quite difficult to take in, because you’ve gone from sort of speaking to somebody on the phone in the morning, who seemed slightly unwell, to actually dealing with somebody who’s completely unconscious in the early evening.

It was just before Christmas, my mum had very kindly and very much in her fashion prepared presents for the kids. And when we went to ICTU she seemed to be unconscious, but when I said, “The kids will be delighted,” her blood pressure spiked massively. So I think that when one talks about coma it’s quite clear that people can actually hear the kind of thing that’s happening. 

Sonia’s family wishes they had had more time to discuss the options and implications.

Do you think the doctors could have approached it differently?

They could have asked us to come up to the hospital I think, that would have been much more appropriate. And say, you know, “We really need to have a talk with all of you about the most appropriate way forward.” I think that if I had been, a registrar, that would have been a more appropriate way to respond. Okay, it wasn’t visiting hours, but nonetheless you were being presented with a situation which is a life or death situation. 

I mean, you know, it was a – bizarre I have to say. And, you know, yeah. It just seemed very, very strange that they should, go about it in that way. But I presume that they then also had to find a theatre to operate in, to scrub up, to get the appropriate teams and so on and so forth together, I nonetheless think they could have asked us – we weren’t very far away from the hospital, so we – they could have said, “Is there any chance that you can come in, and we can talk about it face to face?” I don’t think we felt that we had an opportunity to ask questions. They wouldn’t answer the question about prognosis, you know, if you do operate, what’s the likely future? Well, certainly kind of in the Schumacher case it’s been very clear that people have been very, very clear and making very public statements about with this kind of massive brain injury the person that will recover from it will not be the person that was there before. That the extent of the damage is extreme. And I think if that, if that kind of thing had been laid out more clearly before us, I think we would have been bettered informed about the decision we made.

Did they also give you a sense of – so what sense did you get – if there’s life or death and we can make a decision to try and continue her life or not, did they give you a sense of the possible prognosis- what life might be like for her?

No, no, not at all. No. Because this was the question that my dad was asking I think in, in – you know, all we were told was, the pressure on the brain is extreme and she will die within the night if we do not operate. And when my father said, you know, “If this was your mother or wife what, what decision would you make? What would you advise?” He said, “I cannot answer that question.” And I think that was the moment we thought, “Well, they’re not- they are literally going to bounce it back all to us. There’s no sense in which they’re going to say, even based on clinical evidence, ‘it’s unlikely that she would recover to the functionality that she had before, this is the best case scenario, this is the worst case scenario”. So there was no sense of any parameters within which you could operate. 

And I think that was, massively unhelpful. Because I think even to say “the best scenario is not that your mum will make a full- you know, would make, a full recovery - it is that with a high level adaptation it might be possible for her to do x, y and z within a two or three year period, if she were not to have another stroke”. And then I think you would know that realistically that’s not going to happen. So what you’re looking at is a much less, you know, kind of positive outcome. And therefore you would have made a more informed decision.

And did they at any point say, “Well, there’s a ten percent chance of complete recovery, a seventy percent chance of...”

No, nothing. Absolutely nothing. No, no, I mean, that was the conversation. It really was, we must operate, or she’ll die. Do we have your permission to operate? 

Sonia thinks the craneotomy was ‘the worst decision’ made for her mother – it meant she survived, but was condemned to what the family think was ‘a living hell’.

So, I’m just trying to think what the next stage was. That was the event as it were; and then we were told not really to have any expectations about what the outcome would be. They gave her a tracheostomy, so she had a breathing tube in through her throat as well, and she was being ventilated artificially and fed artificially. And then over the next twenty-four hours they said, “Her blood pressure is falling, she seems to be coming up to a higher level of consciousness.” And we had a phone call saying that she had been talking, she had been talking and she had been asking questions, on the following day, I think this was the – late on the Sunday or the Monday, and that she seemed to be in a position where she could come out of ICTU and move up to a high dependency ward.

And then following that, we did a couple of visits in the morning and the afternoon and then we had a, a phone call just after we had finished one visits, so we were, in the city centre. We had a phone call saying that she had lost consciousness and the sort of intracranial pressure was extremely high. And she was likely to die if they didn’t intervene and what was our decision. And this was kind of a telephone call, so it was incredibly difficult to make a decision after sort of having the news delivered by phone. My father said, “Well, you know, we have no idea really, what’s the prognosis? She – you know, you said that she was getting better, she seemed to be, relatively conscious and, and kind of responding to questions and so forth. And now the situation is looking very much worse, what would you do?” And the response to that was, “I can't possibly answer that question.” I remember my dad asking again, “But what would you do if this was your wife or your mother?” And the response coming back, “I can't possibly answer that question, if we don’t operate she will die.”

And then – so, so we went to sit down together and think rationally about what the – you know, what could one do for the best. And having only recently seen the person – being told that the person had been asking kind of pertinent, relevant questions, was aware of their surroundings, sounding very much like themselves, we made the decision that the operation should go ahead, and so she went back down to, intensive care following that. It was, notionally successful, I don’t know what the measure of success in this kind of thing is, but it relieved, relieved the intracranial pressure… and from that point onwards she was in ICTU I think for  – I actually can't remember specifically, I don’t think it was all that long.  I think it was something like three or four days, until she regained consciousness.  But the level of functionality she had following the intervention was much less than she had, prior to the intervention. And so then the questions that were asked were ones about, appropriate interventions to improve mobility, to improve speech, to improve, you know, the kind of potential, to care for oneself. 

Sonia felt her mother was sidelined in the hospital, and especially disturbed when all therapies were withdrawn and she witnessed a deterioration in care.

So the withdrawal of therapy even if it was a good decision was also quite symbolic?

Yeah, I think so.

I think because you suddenly realise that, they clearly think that this is pointless. That this – yeah. And I think it’s also – it seems like a decision that you’re not really – this is now a body rather than a person, because we’re not providing anything other than care for the body, we’re not providing anything that gives a perspective of productive life. So I think it’s quite symbolic in that way as well, it, – and it feels like a kind of relegation. And certainly feels like a sort of relegation to, this patient is no longer one for whom we can, do anything, other than simply support life. And therefore this is not very important. 

And certainly I think in – depending on the different settings, the level of care for those patients who are no longer having, therapeutic intervention was quite poor in terms of, you know, you’d turn up and find that, you know, mum’s teeth hadn’t been cleaned and her hair was dirty and she just smelt. And somebody hadn’t cleaned up from, – you know, she had dribbled and people hadn’t cleaned up her face and this kind of thing. So, in the hospital setting in which we were told that there was going to be no more therapeutic intervention, it certainly felt like that implied a downgrading of care for the, for the remainder of the person.

Sonia regrets agreeing to an operation to save her mother’s life, but also wonders if more could have been done to help her mother before she died.

I think the worst decision that we made was to, was to intervene. But, as a number of close family and friends said, the what-ifs just lead to madness really. Because you can't answer them. And you can only, you can only make – because there isn’t a right or wrong, there isn’t – there isn’t a clear cut answer one way or the other, because we don’t know. Had we said, “Actually, don’t intervene,” given that operation was being offered only sort of three days after she’d had an enormous stroke, you haven't even actually processed the fact that the original, sort of status quo has gone. And so it becomes very difficult I think – you’re, you’re given no time, undoubtedly because it’s a medical emergency, you’re given no time to react to the first kind of climactic event before you’re required to make a kind of, life or death decision. 

And I do feel that, you know, we could have been, – I – well, I don’t know enough about it medically, but I do wonder whether there would have been ways of, of kind of delaying – I presume not if they had to telephone us on a mobile phone and say, “She will die if we don’t intervene.” but I do think it would have been in retrospect the better decision. 

In effect saying yes was only a choice to delay death, and potentially to, to produce a – what must for mum have been a much more protracted and unpleasant experience than it would have been simply to lapse into unconsciousness and die that night. But the speed at which you are required to react, and the kind of – the fact you’re suddenly presented with these extreme situations is, I think is – would have made it very difficult to say, “Don't intervene.” but I think that, that would have been – you know, in hindsight that would have been the right decision to make, but it’s not one that we made, so (in the clip)

My dad certainly in his darker moments over the, did say that, you know, we’ve actually condemned her to a kind of living death, having not been brave enough to take the step. Which I think is, is, yeah, I think that’s a…that is the end result of the choice we made, but I think we would have to, you know, in all fairness recognise that we made the decision that we felt was right at the time.  And you can't do anything other than that(no cut clip)

Because given the state in which mum was – which I suspect was, physically incapable of any, – physically incapable of expressing any response to the situation, but I don’t think that meant that she was not – that she wasn’t aware of the situation. I think she was very much aware of the situation and certainly though she didn’t have speech and she had, no movement as far as we could tell, apart from being able to move her head from side to side. She didn’t – she had a little, squeeze in one hand, but couldn’t move arms and legs, couldn’t, sit up or kind of move around in the bed at all, that she would have been – she was nonetheless kind of very aware of the situation I think. So that was how it went. And, in my own mind I’m not convinced I’m not sure how little speech and, interactive ability mum had. Because my feeling is that some of it was, a choice not to interact, or to appear to be asleep when visitors came at certain points. Because I would imagine that the situation itself was, you know, almost, almost unliveable.
So, yeah. It was kind of curious. I think it… – I don’t know how one would classify the level of consciousness that mum had, which I think was actually variable, and I think that some of that variability in terms of responsiveness was actually a choice to shut down from time to time because it was easier to do that than to kind of deal with the reality of the situation. But there were a couple of occasions I think – one time – I was trying to think one time when I went, –the – a couple of times when for example she responded to one of my children with a huge smile, but then was completely unresponsive when another of us kind of turned up into the room and so forth. So I have no idea whether those were kind of, you know, what one might say is moments of illumination in an otherwise kind of unresponsive state. But my instinct is that those were kind of chosen responses in some senses to a very, very difficult situation.  

Sonia reflects on a decision not to treat her mother’s pneumonia, and the death that followed – she found it very difficult to see her mother struggling to breathe.

And then, she – so towards the end she was in, hospital on a sort of geriatric ward, pretty high dependency, breathing for herself but with a tube – a PEG tube, and also a catheterisation and evacuation of the bowels being done for her as it were. She got pneumonia, once. And that was treated with antibiotics. I think that was after about a year. And then she got pneumonia again and I don’t know whether the medical staff suggested that they would not treat with antibiotics this time or whether Dad said, “Actually don’t treat with antibiotics”, but it’s not a decision I disagree with, the decision was made to keep mum comfortable with morphine, but not to treat with antibiotics. 

I think I stayed about an hour and a half, she was very, very, obviously distressed by the fact that she literally couldn’t breathe, and so when people talk about, you know, letting the person die of pneumonia, it’s actually, –it’s difficult to tell because clearly also the person has a high dose of morphine so what you may be seeing is a kind of physical discomfort that’s not actually felt as pain necessarily, but clearly she was struggling to breathe, and struggling to breathe was actually making her, as far as she could, move quite, – I wouldn’t say violently because she didn’t have that much movement, but she was clearly very uncomfortable, so I asked that they would, kind of suction her chest. And they did do that quite swiftly and she was a bit more comfortable after that. But, it was just quite striking that if, – that it wasn’t a particularly pleasant passing I don’t think, that there must be a moment – the person must actually feel very, very ill, and that the, point at which one becomes sufficiently unconscious not to be uncomfortable may be later than, than – well, certainly than I had assumed. But I suppose one doesn’t think very much about – I’ve never really thought very deeply about what it means to die of pneumonia without antibiotics as it were, because in effect that’s what you’re, suggesting or accepting that the person will die of.

So that although they have painkillers, unless the morphine is at a high enough dose for that person to be, pretty well out of it, they are going to feel the discomfort that goes with not being able to breathe and in effect drowning in your own phlegm. So that was not terribly pleasant. But I did stay for quite a while and hold mum’s, hand until she seemed to have gone off to sleep, though whether that was actual sleep or whether that was again just a kind of clicking out of, you know, I realise that you’re here, – she was mumbling stuff, I don’t know what she was trying to say. But I was certainly sort of, – well, what do you say in that situation? But certainly sort of, you know, trying to make positive noises and not saying, “Actually mum, you’re dying, don’t worry about it,” but actually to say, you know, “It’s going to be all right, they’re going to, – you know, things will be okay.”