Intensive care: Experiences of family & friends

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.

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. 
 

I think the reason I'm talking about this is that I think that it's inappropriate for people to try and assume that they know how people are going to come out of something like a head injury because what you've got is an individual and they will come out in their own individual way when they're ready for it. And you can't' I don't think enough is known about head injuries. I know my son was severely injured by the accident but I honestly don't believe that enough is known for people to be able to stretch their professionalism to the point where they need to share their long term predictions. I mean it's too soon, you can't share that kind of news in an intensive care situation. Time itself heals an enormous amount. And at the same time allows you to take on board what's happened. You can't present people with that kind of information at that time, and' those were the only two doctors who did that. There were many other doctors, none of whom attempted to do that. 

They would, as much as they would say we don't know what's going to happen here. Yes he is severely injured, you know, we can see that. We can see what we're looking at. We do not know how he's going to come out of this. And that's absolutely fine. That's acceptable, we don't want predictions. It's too soon. 

So that happened and actually the staff were very angry with the doctor for doing this, apparently he's done it to other people as well. And I was given the opportunity many months later of actually talking to him with another senior doctor who was there and also a senior sister. I was actually asked to come into the hospital and go over it again. But I still don't think, I mean I've never had to go over anything like that before so I still don't think I knew how to handle that situation properly. I'm not sure whether it was talked through. But I do feel that awareness was raised amongst the senior staff that this was happening, and that for me it was inappropriate to be approached in such a manner whilst my son was in the intensive care unit in the early weeks of his accident. Obviously it's different for other illnesses or you know, if you break a leg, you know it's going to be so many weeks for recovery but for a head injury, I think you need to be very careful about long term predictions because you see the other thing is that I'd' first of all I didn't feel that I could turn to this doctor anymore.

I would have preferred them not to have approached me at all in that way. I think it's inappropriate. Unless you're actually asked by somebody, directly, what you think the outcome is, and even then I think you need to be measured in your response, you know, it really isn't good enough to feel that you need to have to pass on bad news and I don't know what the reason would be for it. Because really there's no place with a head injury to a young person to move things on as quickly as possible. There really isn't. Now it may be appropriate for people who are perhaps much older and dying of cancer or other illnesses but it's too soon for a head injury. It wasn't necessary and I would have preferred it not to have happened. I didn't ask for their input, but both times I was approached, all the rest of the time all the other doctors were there and we were able to ask what we wanted to, and when any results came back, and then they were, 'We've got these, come let's talk about it.' So they were utterly supportive without pushing themselves. So I don't know what it is that causes some people to feel that they need to move people on. It's too soon.