Intensive care: Experiences of family & friends
Receiving information and news from doctors
When a family member or friend is in ICU, people often know little about a why a person has become ill so quickly. They are dependent on doctors and nurses to tell them what is happening and what to expect. Here people talk about receiving information and news from doctors. Everyone is different and experiences ranged from those who were very happy with the information they received, and how it had been given, to those who felt disappointed.
When the patient first became ill, many relatives and close friends didn't know what was wrong with them, why they'd become so ill so quickly or how seriously ill they'd actually been. If the patient had an accident, they usually hadn't known the extent of their injuries or how serious these had been (see 'Emergency admissions'). When the patient was being seen in Accident and Emergency, many had waited desperately for any news from doctors. Before the patient had been admitted to ICU, they'd usually spoken with a doctor, learnt how ill the patient had been and that the illness had been life-threatening. Many still hadn't known, at this stage, exactly what was wrong. Once the patient was admitted to ICU, most people had visited them every day and waited for news on whether the patient would survive and, if they did, whether they'd be left disabled, brain damaged or paralysed. In the early stages, even the doctors hadn't been able to answer all these questions and the wait had been extremely traumatic.
Once the doctors started getting test results back and seeing how the patient responded to treatment, they'd been able to give some information to relatives and close friends, though often very little in the early stages. Many people said they felt doctors had been honest about what they'd known and hadn't known and had explained as much as they could. Most had been happy with the way medical information had been explained to them by doctors and felt it had been given honestly, clearly and compassionately.
Doctors were happy to answer all his questions and phoned him to explain exactly what was wrong...
A number were related to the medical treatment because I mean one example was she arrested and when she recovered from that I wanted to know what had caused that. Her blood chemistry, potassium levels were wrong. And I wanted to know why they were wrong because they did a blood analysis regularly and the nurses were very good. They used to go through them with me. And according to the records her potassium levels had been within normal limits so why should this happen. Why should she have an arrest and have to go on another drug. And it was that sort of thing that I wanted to know about. And how long she would be on these particular medicines for. She developed a raging infection which, initially, could not be identified. I mean swabs were taken and microbiology was involved but of course she was on an all embracing antibiotic when she went in because of the lung infection she had got, so that was suppressing anything. And I wanted to know why it was that microbiology couldn't pick up what the root infection was because of the antibiotics she was on to keep infection to a minimum, they were suppressing it. And I was reassured that at some point or other this little microbe would rear its head and go to the parapet it would have it and, of course, it did.
And they were delighted to ring me up and tell me, 'We know what it is. We have got it' and of course antibiotics were prescribed and the infection was killed off. So it was that sort of thing that I was asking them and also she had to have haemofiltration. I mean she was, the euphemistic call it 'well perfused', she was oedematous really. She had to be haemofiltrated. And of course being me I wanted to know what had gone on and why this was happening to her body and they went to great pains, the doctors, to explain what had happened to her body system that had caused this sort of problem and how it's dealt with. So they were very good in explaining all that to me, but you see I would write in this diary, why has this happened, why has that happened and I was able to go and ask them and they didn't mind at all. They were only too happy to explain to me what they knew.
She never learnt why her husband got so ill so quickly, but felt ICU doctors always gave...
What kind of information, support, how were they amazing?
They told me everything. I knew everything from every bleep because he was wired up. At one point I think he had nine or ten drips in and his heart monitor and the ventilator, which is very scary anyway. Because the best way I can describe it is sounding Darth Vader. And they explained everything they were doing. When they were taking bloods to check for things and what tests they were doing and the consultant spoke to me every day while I was there to explain what the next step was, and what it could be, and what it wasn't. I mean, every step of the way they did keep me informed. And any questions they answered.
What were your main questions at the time. Can you remember or'is it a blur?
No there were various things. It is like he had been fitting or having seizures as they say and they just had to keep him further sedated to try and stop those to begin with while the anti fitting drug kicked in. And it was things that I would ask like, 'Well is he actually fitting underneath what we can see inside', and things like that and the doctor explained that, 'No he hasn't had muscle relaxants, so if we didn't see him fitting he wasn't fitting' and things. And just, as I said, the actual diagnosis isn't paramount at that point.
Some said staff in ICU did everything they could to make the patient comfortable and help them improve. One woman said that a special bed had been ordered from another hospital for her critically ill friend. Although her friend had started improving and hadn't needed it, it reinforced for her that the ICU doctors had done everything they could to help the patient recover.
One father and daughter praised the advice they'd received from a doctor, who recommended they stay as emotionally balanced as they could amid the extreme highs and lows when patients continually improve and deteriorate. Most people said they'd appreciated clear communication, empathy, and news given in a direct, honest and compassionate way. They'd also liked the doctors who'd been approachable.
A few people who'd worked in the health field felt doctors had explained information in more detail once they'd learned they had a health background and were familiar with medical terms.
She is a pharmacist and was pleased doctors explained her husband's illness in lots of detail...
Some people said they'd been happy with the care the patient had received but hadn't always understood what doctors had told them about the patient's illness. They felt doctors had sometimes used medical or technical terms without explaining them. A few said they'd been told the patient had been 'stable' or had 'a comfortable night' but wondered what that had really meant. Some said, if they hadn't understood information from doctors, they later asked nurses, who explained it more clearly and had more time to go into detail (see 'Nursing care').
A few people said they'd believed the patient had been improving only to learn hours or days later that the ill person had deteriorated again and could die. This had come as yet another shock because they'd assumed the worst had been over. One woman said that doctors had told her that her son was 'stable' when he was critically ill. She'd assumed he'd survived and had been extremely shocked when, a few days later, they'd told her he could still die. She also hadn't realised until much later that he'd been on a life support machine or ventilator and would have died without it.
At the time her son was ill she didn't know he was being kept alive by machines.
Some said the patient had head or brain injuries and doctors gave them information about the patient's progress at every stage. They'd been told on several occasions that it had been too early to predict whether the ill person would be brain damaged and that recovery from head injuries was often long and slow. Two couples, however, both of whom had sons with brain injuries, had been disappointed in the attitudes of some doctors. One couple felt they'd been asked by a doctor to decide whether they'd wanted their son's life support machine switched off because he hadn't been responding and would be left in a persistent vegetative state (PVS). This is a condition in which the patient is severely brain damaged and totally unresponsive to any of their surroundings or other stimuli. At the time of the interviews relatives could not give consent but could express an absence of objection (assent) to a procedure being performed, unless they'd had power of attorney. Treatment decisions have to be based on medical evidence and taken in the best interest of the patient (see our section on family experiences of vegetative and minimally conscious states for more on 'best interest' decisions.)
Another couple said they were told that their son wasn't responding, would be brain damaged and that they shouldn't raise their hopes about progress. Both of these couples were disappointed when doctors dismissed their claims that their sons had shown signs of awareness, and both had felt it had been too early to predict how they'd recover after a brain injury. In both of these cases, the critically ill person recovered and was now living a healthy and full life. Like a few others, they felt parents know their children best and can often pick up things about them that other people can't.
She was extremely disappointed in two doctors who wouldn't believe her when she said her son had...
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 beca
In the early stages of a patient's critical illness, relatives and close friends are often under extreme stress as they wait by the patient's bedside for any news or signs of improvement. Under such stress, it is difficult to retain all the information given and, even what little information is given by doctors at the time, may feel inadequate or negative. One person we spoke to was an ICU doctor himself. When his father became critically ill, it reaffirmed for him just how important it was for doctors to communicate clearly, honestly and to repeat information because relatives and close friends were often under too much stress to retain information.
He feels it is important for ICU doctors to keep repeating information, give information that is...
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.
He found it hard to understand the information doctors gave him and to retain the information...
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?
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.
In the early stages, emotions are often running high and relatives and close friends may be clinging to any signs of hope and progress. Some people praised doctors who'd told them about the person's illness frankly, leaving no room for misunderstanding.
He praised one of the senior doctors who always told him about his wife's progress very directly...
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?
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.
Some felt that a frank explanation had often felt too harsh, direct or negative. Others praised the skill and expertise of doctors but felt they didn't communicate news and information in an understanding or sympathetic way. Yet others had felt that the doctors communicated news to them in such negative terms, they'd been left with very little hope. Many felt that some doctors were better at communicating news than others and that some had been more negative than others, often 'painting a worst-case scenario'. One woman said she'd been very happy with the care and explanations doctors had given her about her husband's illness but one doctor, a locum, had been extremely negative and told her that her husband wouldn't survive. This had been very upsetting for the whole family, particularly as none of the other doctors had shared or expressed that opinion. Some said they'd been pleased with the way senior doctors and nurses had kept them informed and updated but felt some of the trainee doctors had been less skilled at communicating news or relating to them as people.
He felt ICU doctors were extremely skilled but was disappointed in the way some gave information...
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?
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,
One participant, an ICU consultant whose father had been critically ill, said that ICU doctors have to strike a balance between giving information to relatives without raising their hopes at a time when the patient's survival is uncertain and could go either way. Often, doctors err on the side of caution rather than optimism.
He feels it is better for doctors to be cautious when giving relatives news rather than raise...
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.
Some people said they'd been confused at what they'd felt had been conflicting information from different doctors. Others said the news had seemed conflicting but, because the patient had deteriorated and improved so often, they hadn't been able to tell if this information had been confusing or the situation itself, which had been extremely uncertain and changeable.
Some doctors thought her sister-in-law had a chance of recovering when she was first admitted...
One woman felt quite angry because she'd been given conflicting information about whether her husband had MRSA. This is a bacterial infection that mainly occurs in people who are already ill in hospital and can be difficult to treat.
Throughout her husband's stay in hospital and afterwards, she received conflicting information...
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.
One woman's son-in-law and daughter had a car accident; he was in ICU and her daughter was on a ward. She said that communication between ICU and ward staff had been poor and her daughter had been given very little information about her husband's condition. When one particular consultant came on duty, however, this situation improved immensely.
Everyone is different and some people said they'd wanted as much information from doctors as possible while others hadn't. Some felt that that information was rarely volunteered but was given when asked. Some people had been disappointed by this. Others said they hadn't asked for much information, had trusted the staff and might not have understood the details anyway. Some people said they'd told doctors to give them as much information as possible and for them to be honest with them, whatever the news. One of these people was surprised when she spoke to other visitors in the relatives' room who didn't have much information about their patient at all.
She asked lots of questions and wanted to be kept informed but was surprised when she spoke to...
So I think it is really up to you what level of help and information you want, but if you want to know, ask. I made it very clear to the doctors, really very early on, that I wanted to be informed all the way and that if he was going to die I wanted to know, and they were very good. They did everything I asked. But having met other people in the relatives room who said, 'Oh we don't know what is going on', and I have said, 'Well have you asked', they said, 'No.' So I do think that if you want to know everything then you have to ask and you have to tell them the depth that you want to know by asking the questions. And if you have got any fears or worries then talk to the nurses and the doctors and they really will tell you exactly, sort of how you can sort of help, how they can help you, or how you can obtain help. But you need to ask. That is what I would say.
One woman said she'd been volunteered information but, because she'd felt it had been extremely negative and too soon under the circumstances, she hadn't wanted it.
She felt it was too soon to tell whether her son would be brain damaged after an accident and she...
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.
A few people said that, although they'd been happy with the information and news doctors had given them, with hindsight they'd wished they'd been more assertive about tests when the person had first shown symptoms because this might have prevented them becoming critically ill. One woman wished she'd insisted doctors had taken a chest x-ray sooner because her partner might not have become critically ill if he'd been treated earlier. Other people wished they'd insisted that the ill person see a GP sooner than they had (see 'Emergency admissions').
Last reviewed August 2018.