Intensive care: Experiences of family & friends

They explained that he was going to be kept in a medical coma, to give his body a chance to recover. And they took us off to the office and sort of explained things. Spoke to one of the anaethetists and a couple of the nurses were there, the vicar was there, our friend was there. And then the anaesthetist went through the clinical side more, and explained what his physical state was like. And it was quite good in the fact that somehow he had, I guess from the ward staff up in the treatment centre, he found out I'm a pharmacist and that he explained in a reasonably technical manner, he just pitched it just right actually. Because I understood exactly what he was saying. And one of the nurses said to me afterwards, 'I was a little concerned because he seemed to be talking in quite technical terms and I was worried that you wouldn't understand'. They explained what they do and she says 'Well that all makes sense now.' And that particular nurse was actually a student nurse, she was part-way through a degree course, so like a student nurse, and then there was a senior staff nurse looking after [my husband], who explained everything that was going on.
 

We noticed very early on that he was responding, he was appropriately responding with a squeeze of a hand or an expression on his face. The staff at first, were disinclined to believe that this was happening. They were very kind but they also were looking at the results of the CT scans that they could see, they were interpreting what they were seeing. And from the results of the CT scan, they weren't sure that we couldn't possibly be seeing what we were seeing. If you love somebody and you know them very well, you can often pick up things that other people who don't know them wouldn't be aware off. And there might be a flicker of amusement on my son's face or he might you know, frown or' and it would be entirely appropriate to the situation that's going on around him. 

And I think the staff were fantastically supportive. But there were two doctors, there was a young doctor on night duty in the early days, and I was sitting by his bed and all of a sudden she came out of the nursing station and she said to me, I have to tell you I'm a senior doctor. I've had a lot experience and your son is very severely brain injured, and you need to take this on board. Basically, those were her words. And I can remember saying to her, 'Yes, I know, I know he's badly hurt but it's too soon', because she was making the step of trying to encourage me to accept that this had happened. And I don't remember whether she was trying to' I don't know what she was trying to do really. I hadn't asked for the information and she kept trying to put it over her point and my reply was always, 'Yes, I understand exactly what you're saying but it's too soon'. Obviously I did because I'm a registered nurse. 

Exactly the same thing happened with another doctor after my son had had his operation.... And when he came back they stopped all sedatives so he'd had a fortnight of complete sedation and then nothing. And so he obviously started to come out of it and was responding and one eye was opening. And at that time we thought he was seeing out of that eye and' therefore we could see responses in him, we were communicating with him. He had a tracheostomy so he couldn't talk. But we were clearly communicating with him. 

Then my son went down to have the peg put into his stomach. And in the afternoon this other doctor came on duty, a senior older doctor, and he walked into the room where my son was. My son had had a sedative and he had a local anaesthetic to have the tube put in. And the doctor said to me, 'You do realise that your son will probably not' this is how your son is going to be.' Obviously he was flat out because he'd had a sedative. I said to the doctor, 'No, my son is responding'. 'No, no, no', he said, 'Your son's not responding.' So I said, 'Well the nurses are aware that he's responsive'. So he said, 'No, no, no'. He said, 'It's typical of parents at this stage to feel that they can see responses in their relatives'. But he said to me, 'It's a bit like young parents with their first baby, when they think they see a smile and actually it's wind, it's not a smile, it's not a response'. And he said, 'This is what you're doing at the moment, you're reading what you want to see into the situation. He said, 'It will be easier for your son because he will be like this. So he probably won't be aware of, you know, what's happened, it could be much more difficult for you'. And by this time I was steering this doctor out of the room because you know, obviously my son, even though he was sedated, he could still be hearing this. And I was feeling a bit frustrated and irritated that I couldn't get over to this man that my son was responding. 

Then I took the doctor outside the room and we were talking in the ward, I actually got a bit upset because he wasn't listening to me. He wouldn’t take on board that we were seeing responses in our son. And off he went. And he… then one of the nurses spoke to him because the nurse who was looking after my son said to me, “I’m terribly sorry”. I said, “It’s not your fault, you had no idea he was going to come in and do that”. “And that’s the most extraordinary conversation I’ve had with anybody ever”, just extraordinary and she just kept saying, ‘I’m so sorry that shouldn’t have happened’.

One of the other nurses spoke to him and so he came back in, I think ostensibly to apologise. But he started to do exactly the same thing again. So I had to steer him out of the room once more. And then he said to me, he said, “Well I’ll tell you what, I’m on duty for the whole of the weekend, if your son at anytime starts to respond, get them to page me and I’ll come so that I can see it”. But by this time I was angry and there was no way I was going to get anybody to page him. If he could not accept that we were seeing what we were seeing even though my son couldn’t talk with his tracheostomy, he was definitely communicating. He was there. It was my son.

It has mainly reinforced a lot of what I believed beforehand. Perhaps I delude myself but I like to think that I am good at communicating and, therefore, even before this happened I would spend a lot of time with relatives because I appreciated that they are the ones who are awake and worry whereas the patient is often asleep and not worrying. And often when the patient recovers there is a big black hole and you have to try and fill in the gaps. So I encourage some families to keep a diary so they can explain what went on in that big black hole period of the patient's life. 

But what have I learnt? It has reinforced the importance of communication, it has reinforced the need to be totally consistent so that people are saying the same things. It has reinforced the message to reinforce the message, to keep repeating the explanations and also to be totally honest. I have always been honest, so the patient's relatives are under no illusions.

Is there any message or advice from all of this that you would give to health professionals, having been a relative? 

The importance of communication. Honesty, repetition of the same message, reinforcing it, consistency. I think they want an honest consistent opinion and regular updates. That is probably the main message.

Husband' Like I say, they told me what was wrong, what they were doing, you know what I mean. They told me everything they were doing. They were doing this for a certain reason. This drug was for something else. But it was above my head, it was above me, you know what I mean. I couldn't understand it. There was sort of, it was, it was too much. I said to you, didn't I? 

Wife' Yes, because they - 

Husband' I couldn't understand it. 

Wife' - they come out with the, the proper words. 

Husband' I couldn't, it was too much for me to take on board. If somebody had put it in layman terms for me I would have been all right, I would have been fine. 

Wife' If they would say that, 'Oh, we're putting her on antibiotics to get -

Husband' But, you know. 

Wife' - rid of this infection' or... They didn't. They said they're putting me on'

Husband' Some - 

Wife' They'd say 

The drug's name? 

Wife' Yes. 

Husband' Yes. You know, if they'd said, 'Oh, this tube's doing so-and so and this feed's doing...' you know what I mean, I'd have been all right. But it was all gobbledegook, it was, it was above my head, you know what I mean. 
 

Husband' It was Professor [doctor's name] who discharged you [wife], didn't he? He was brilliant, you couldn't, oh he was a fantastic doctor, wasn't he? 

Wife' He was, yes. 

Husband' He was. There was nothing about that gentleman, he'd tell it to you bluntly, as it was, there was no middle line. He'd give you the bare facts and that was it, you know what I mean. There was nothing trying to cover things up. He told you exactly what it was, and that was it. Nothing, no, you know, you didn't have to say to him, 'Oh, give it to me straight'. It was straight, you know what I mean. There was no messing with him, was there? 

Wife' No. 

Husband' Eh? He told you straight. 

Because he told you straight, you understood exactly what he meant? 

Husband' Yes, yes, precisely. You know, there again on Intensive Care the doctors were coming round and they were saying, 'Oh, so-and-so-and-so'. It was above my head because I didn't understand what they were saying. But they were very good to me, you know what I mean. They tried to put it in layman terms so I did understand it. But with Professor [doctor's name] he was, you know what I mean, it was straight to the knuckle, wasn't it? And he'd just come in and say, you know, 'How are you?' 

Wife' - when he said I could go home, he said, 'Are you looking forward to going?' He said, 'When you get home, you'll be..... 

Husband' Yes, he did. 

Wife' He said, 'You need to go straight home and straight to bed'. I couldn't even get up to bed. I laid on the settee and went to sleep. 

Husband' Yes, that's what I liked about that man. He was straight up. 

Wife' He told it to you straight. 

Husband' There was no messing.
 

The doctor and nurse came across and took me into the relatives' room, sat me down and again it was late in the evening, it was during the nightshift, and sort of basically said that if [my partner] didn't improve pretty quickly it was really quite dark, it was sort of a 50'50 scenario. And that was hard. And I didn't really, it was one of those things where you want to be informed of what's happening, but you don't necessarily appreciate the manner in which it was communicated, if I'm honest. And again the doctor I think was a good doctor and the nurse was, I remember exactly which nurse it was, she was a lovely nurse. But the communication of the situation was not the best I think. 

I mean I think this is one of the things that we found out through a lot of the whole thing is that the doctors are great at keeping people alive, but they're not necessarily the best communicators in the world. And that was difficult. But again over a period of time you sort of get used to, that it's that doctor's way that he paints the worst picture and doesn't put any positive light on it at all. 

You mentioned some of the doctors in the ICU could have been better at communicating news?

Yes. 

What would be the best approach? 

I don't know, and I've thought about this a lot. I don't know whether it's just the, where we live in the world at the moment in terms of time and stuff like that, but I seem to think that they seem to paint a worst-case scenario every single time. There was never, again this is the obsession with the numbers, if we'd sat there and thought [my partner] had done well, there was never, well certainly at the really difficult times, there was never any positive, or there seemed to be very little positive. I'm sure there was. There seemed to be very little positive feedback coming through from the doctors. And then when they used to sort of take you to one side, it used to be more, I used to dread it when they used to do that because it just used to be more of, 'It's getting worse and...'. I mean maybe they were just telling it as it is. And, [my partner] was seriously ill. But it was just how that information was relayed, how it was passed on. 

I remember one doctor in particular, he caught me twice and told me some pretty horrific stuff. And it was, I suppose ultimately it seemed like [my partner] was just a number to him. And then there was another doctor, where similarly it was just [my partner] was just another patient. Which I understand from their point of view, she absolutely is. But from my point of view, she's not. She's the most important thing. And you sort of sit there and you wonder whether they, they obviously have so much training and experience in how to diagnose, how to, I've forgotten the name, what the word would be, but how to deal with people's illnesses and problems and stuff like that, but not necessarily how to communicate. And I do wonder if it was me and I could sort of look at a doctor's training, I would say, 'Right, these doctors have got to go for, like a percentage of their course has got to be how to handle people'. And I suppose if they were, you know, their skill is in diagnosing people and issuing the right drugs, and why those skills can't necessarily be tied in with how to talk to people and how to sort of say, 'Your girlfriend's in quite a tricky position, but we're doing everything we can and I'm quite confident that, hopefully she'll react positively'. To be sort of sat down with someone and saying, 'Oh, if we hadn't ventilated her at this time, she would have died within two hours', for me that's pointless information. It's not the information I need to hear or want to hear,

The golden rule from my perspective of Intensive Care is never to be too upbeat with families. If you promise the world and the world isn't delivered, then they are much more likely to be bitter, angry and resentful. I think it is much better to err on the side of pessimism so that a positive outcome is a bonus rather than an expectation. 

And was that how you felt when you gave information to your mother? 

I reassured her when he was doing well but warned that things can go wrong, there is a long way to go etc. It was never playing it down as just a little blip but everything will be fine. If you build up hope, there is nothing worse than that rug suddenly being pulled away. I do some medico-legal work, giving independent expert opinions and two major issues are poor communication and giving the impression that the patient is a lot better than they really are. The relatives feel aggrieved, angry  and are looking for somebody to blame and so they use poor communication as a channel to focus their anger on.

While he was sedated he did get a secondary infection and he was put into a isolation room. And I asked a question obviously, the MRSA question, 'Does my husband have MRSA?' And I was told quite categorically, 'No he doesn't, there is nothing to worry about, he does not have MRSA'. And I was told that with my sister by my side. 

My sister wasn't told any different to me because I thought maybe they might have told her and not me because I was in a state. But, no, they didn't. And since then, because of the chain of events before [my husband] went into ICU, I was very unhappy with an awful lot of stuff that happened before. I'd written to the chief executive of the hospital, outlining my concerns and I did mention this MRSA thing because when [my husband] came home from hospital he had a district nurse come to check his tracheotomy scar and the rest of it and she came up with, about the MRSA and that was the first that I'd heard of it. So I challenged her on this and she said, no, it's definite. And I said, 'No, I'm sorry you're wrong.' So I'm arguing with the district nurse who then phones the hospital and then she phones me back full of apologies, 'I'm so, so sorry, he doesn't have it. I don't know how it got onto his notes. I'm so, so sorry.' So that was one of the things on the letter to the chief executive. And she's written back to me and she has told me, 'No, he does not have MRSA.'

Reading the ICU diary that they produced for my husband, I think that was why I was so disappointed. Not angry, just disappointed. Because when you ask, when you ask a specific question which I did, 'Does he have MRSA?' And they say, 'No', quite categorically he hasn't, there is nothing to worry about. And up to then I just thought they were all fantastic and I still do think they are all fantastic. Apart from that little glitch in the middle. And I know why they do it, because MRSA has a dreadful press but I'm sure if they knew more about it, knew what they were doing, the other thing is my husband has an elderly sister and she was coming in, kissing him, cuddling him, she's not a well lady. If I had known he had MRSA I would have just asked her not to come. He had somebody else come in who was, came in to see him and was going off to the cancer ward to see somebody else there. I would have asked him not to come in. If I had been told I would have asked him not to come in.