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Intensive care: Patients' experiences

Information for people admitted to ICU for emergency treatment

Most people admitted to an intensive care unit have had an emergency illness, accident or surgical complication (see 'Reasons for admission: emergency admissions'). Before their own experience, many had known little about intensive care, including why people are admitted to ICU or any of the treatments they are given. Because they were unexpectedly and critically ill, there was little or no time for them to think about information or ask questions. Many of those who were sedated remembered little leading up to sedation and, when they came round, their memories were often hazy or confused. Once they were more aware, some people wanted to ask questions and find out as much as possible. People also wanted information at different stages of illness and recovery and on different topics. Others said that the only information they really wanted was to know if they were improving.

Asking questions in ICU
Once they were well enough to take information in, most people wanted to find out basic information about what had happened to them. This included what was wrong with them, how long they'd been in hospital and when they would recover. Both health professionals and relatives talked to them about this. Often it was relatives who were important in helping to answer these basic questions.

 

She got snippets of information from family and nurses and from reading her cards and letters.

She got snippets of information from family and nurses and from reading her cards and letters.

Age at interview: 44
Sex: Female
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My family used to come in at various times and feed me. The nurses were good. I found out more from the nurses than I did doctors, what was actually going on. All I was told was that I'd been seriously ill. It wasn't for several days, maybe weeks, before I finally found out what was wrong with me.  

I had to have scans. At one point they thought I'd got TB, but I didn't. I had biopsies done from my lungs and was told I suffered from pneumonia, but a very serious viral form of pneumonia. 

I would pick up bits from what my family would say. But I didn't, I think they didn't really tell me the full extent of it until just before I came off of Intensive Care. And things, I'd receive cards and letters from people. Because like friends couldn't visit me, they'd write to me and send me letters, and I started like picking up on that, you know, little things they'd say. And I thought, "I must have been really bad." And I'd ask my family, and obviously they found it hard to talk about, to say, you know. And perhaps they didn't understand all what had happened.  

And what did the doctors or nurses, you said the nurses told you more than the actual doctors?

They would just tell me like what the drips were for, why they were doing things. I mean I put it down to the nurses.

Many people said that they were told about their illness when they were in intensive care but hadn't been able to remember what was said to them at the time. They stressed the importance of having information repeated to them again and again. Some hadn't been able to ask any questions when they came round, because breathing equipment made it impossible to talk. A few thought that their families had been told much more about their illness than they had.

 

He didn't know how much to tell his partner in case it worried her and hindered her recovery.

He didn't know how much to tell his partner in case it worried her and hindered her recovery.

Age at interview: 46
Sex: Male
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Partner' Well when she first woke up, like she said, she didn't know what had happened and we didn't know whether we should say how ill she'd been because whether psychologically it might you know affect her and make her less positive about getting better so we were saying she'd been very ill but didn't go into great detail. Whether that was the right thing to do I'm not sure or whether we should have told her straight away I don't know but I think one of the nurses actually told her when we weren't there how ill she had been, and she'd been critical and that. So that was really sort of taken out of our hands really wasn't it? 

Patient' But she did that because I was, she felt, and you know you can only go with what the healthcare professionals tell you, she felt I was pushing myself too hard because you know I literally, I can imagine I was a bit of a pain really because things like they were saying we're going to sit you out which must be a medical term but it means sitting me in a chair, but they said I could go outside and my impatience to go outside. You know it was probably only a couple of hours but I was harassing this poor nurse. 

Many people wondered why they were so weak and had been told, often by physiotherapists, about the muscle loss they'd had after being critically ill and immobile in ICU.

Finding out about treatments in ICU
Some people recalled that nurses and other medical staff in ICU had told them about the procedures they had to perform and why these were needed. Others said, with hindsight, that they would have liked to have been told more about these. Some people wondered if they had been told at the time but hadn't remembered because of their physical and mental state.

 

She would have liked to know which hospital she was in and why, and to have this information...

She would have liked to know which hospital she was in and why, and to have this information...

Age at interview: 47
Sex: Female
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There were a lot of questions that I didn't feel were answered. I think the family were told more than I was. And I would like to have been told, even though perhaps I wouldn't have fully understood. I would like the information to have been repeated to me. I remember one of the doctors on Intensive Care, when I was getting better, coming to tell me what had happened and why I was there and what to expect. And then the day after he came and told me exactly the same thing because he said, "Your memory won't be great." And I really appreciated that, because there were things I'd forgotten that he'd said to me. 

But I wish more people had been like that. And I wish they'd talked to me more when they thought I was unconscious or semi-conscious. I still wish they'd talked to me. And, like I say, some of them did. Some of the nurses would say, "This is my name, this is what I'm doing" or whatever. But I would like them to have been really clear about, "This is the hospital you're in. This is what's wrong with you. This is what happened." And to just keep telling me that, because I didn't really understand why I was there. I didn't relate it to the hysterectomy at all. I thought that I'd had the hysterectomy a long time before, and been home, and gone back with something else.  

It didn't occur to me that it was because of that. So I think I would have benefited from knowing that. And also when I got the MRSA I didn't know. They moved me into a room on my own, an isolation room, and I didn't know why. And then they were talking to my family about me having MRSA, and I thought, "Why has no one told me?" It may be that they had and I'd forgotten. And that's why I think it needs to be repeated with people. If you're on medication, you know, and you've got so many drugs in you, you don't always remember what's been said. 

Most people had been happy with the information they were given and said that doctors and nurses explained medical information clearly and answered questions honestly. Sometimes people acknowledged that their questions couldn't be answered and medical staff were honest about that. Some said they trusted the expertise of doctors and nurses and asked few questions about their illness and treatments. Others wanted as much information as possible in order to regain a sense of control. Most said they could understand and remember information better, when they'd improved somewhat and had their minds were clearer.

Being prepared for leaving ICU
Some people who have been in ICU go directly to a general ward when doctors consider them to be well enough. Others go to a High Dependency Unit (HDU). Some people who were transferred from the ICU to a HDU said they would have liked to have been better prepared.

"Before a patient is discharged from intensive care, s/he should be given another health check (called a short clinical assessment) to identify:
  • any physical or psychological problems
  • the likelihood of any problems developing in the future, and
  • their current rehabilitation needs
  • If the health check shows that the patient could benefit from more structured support, s/he should have a more detailed health check (called a comprehensive clinical assessment) to identify their rehabilitation needs"  -The National Institute for Health and Care Excellence (NICE) CG83 (2009)

Most people we spoke to felt completely unprepared for the transfer to a ward, even when they were told that there would be fewer nurses per patient. Some couldn't remember being told about this. Others noted that their relatives would have liked more information about what to expect on the ward (see 'The general ward: care and environment').

 

Going from ICU to a ward was a shock, but was glad to be recovering.

Going from ICU to a ward was a shock, but was glad to be recovering.

Age at interview: 37
Sex: Male
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I mean basically it is a complete shock to go from Intensive Care to the general ward. In Intensive Care you get one to one care, you know someone's always there. To go straight to the general ward, you're not really told about, that there is other people, about their care's are there just as much as yours that are needed. There's, not saying a shortage of nurses, but obviously you have to wait, you have to press the buzzer to get them. You do get frustrated because of what you've been used to. You're not getting people coming to you as quick as before So the that is sort of a big issue, I don't know how that can be dealt with but as I say the main thing is, I know it probably doesn't work always, but you should be glad that you're actually out of Intensive Care because generally that's a good sign, going on to a general ward that you're on your way home sometime, now alright it doesn't always work out like that but generally you should be glad because you're actually on the road to recovery, to get out of Intensive Care.

Information about recovery
Most people said they were completely unprepared for how long it took to recover. Some of them wished they'd been told more about this when they were discharged. Others said they had had all the information they needed from doctors, nurses and leaflets, but still didn't expect recovery to take as long as it had. Some hadn't believed what doctors had told them about the recovery time and a few didn't want to accept this information.

 

He didn't want to hear it would take a long time to recover but realised that people meant well.

He didn't want to hear it would take a long time to recover but realised that people meant well.

Age at interview: 68
Sex: Male
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And I think that's what's vitally important for a patient who's recovering, to have the positive reassurances. At the same time to have honest feedback, though sometimes the honesty is not what you want to hear. Honesty like, "It's going to take a long time for you to recover. It will be Christmas 2005 before you can talk about this experience in the past tense.' That seemed an eternity away, and I wasn't strong enough to face that long journey. And people saying to me, and it was a bit of an irritance, and I know they were trying to help me, visitors of other patients or patients who'd gone through the same experience saying, "Rome wasn't built a day" and, "Step at a time. Step by step." I can now understand the love and the feeling behind those sentiments, but at the time they seemed to be cold statements, which were not particularly helpful.

Some relatives said they would have liked more information on what to expect when a person returns home after being critically ill in ICU (see 'Impact on family').

Looking for information

Once they were home and well enough, some people wanted more information about their illness and sought it from various sources: doctors, nurses, family, the internet, leaflets.

 

She realised after her daughter had died how little information there is for parents about rare...

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She realised after her daughter had died how little information there is for parents about rare...

Age at interview: 37
Sex: Female
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Afterwards, when I was on the Internet, what I remember specifically is, these children, they're vaccinated against x amount of meningitis but people don't mention the rare ones. I mean nobody knew about, you know, the pneumococcal that she had. I mean I think I had heard of it and it makes sense that there could be a pneumococcal. But the education isn't out there about, they're all talking about meningococcal and the rash and the, you know, tumbler test and all that.  

What would be good to be out there? What kind of information? 

Just be aware that it's not, meningitis isn't rash-specific, you know. That's my only thing. Because I've got a friend at work and she's got a toddler who's coming up to the same age and I just said, you know, "They talk about this rash, and they talk about this, and it's not rash-specific, you know." I said, "I'm not scaring you, but just be aware, you know". I don't think that kind of education is out there.

 

She wondered how she'd got colitis and why she hadn't been told sooner about having a colostomy bag.

She wondered how she'd got colitis and why she hadn't been told sooner about having a colostomy bag.

Age at interview: 23
Sex: Female
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Yeah, after they'd done the x-rays and things, I had colitis.  

And did they explain what it is?  

No. I actually, someone actually brought me a leaflet from another ward and told me to read it because my cousin, she'd just got diagnosed with Crohn's disease. And like whilst I was being poorly at home, everybody thought it was Crohn's disease, like she'd just got diagnosed. But it was colitis obviously, different well they're similar but different. So like my cousin told me more about it than anybody else and, like I say, somebody brought me a leaflet. That's about it really, they didn't really explain anything, do you know what I mean?  

What kind of things did you want to know?

What it was. What had happened in the end, because my surgeon, when I was on Ward 11, before on my two weeks on that Ward 11, every day I'd see my surgeon. They'd do the ward rounds, and he'd come and say, "Look I don't want to operate, it's the last thing I want to do." And I was like, right fair enough, you don't want to operate but he didn't explain nothing about stoma, having a colostomy bag, you know what I mean? And like from the beginning I'd like to have known that, not an hour before my surgery, you know ...  

 

She asked her family to find out more about Crohn's and looked on the Internet when she got home.

She asked her family to find out more about Crohn's and looked on the Internet when she got home.

Age at interview: 38
Sex: Female
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The information was there, it was once, if I asked they told me, it wasn't a problem. It got to a stage where they used to come and ask me because if they used come and check my blood level, this that and the other, they used to say, alright then [participant's name], what is it? Because I made, I think because I was out of it in a sense where I didn't have the opportunity to know exactly what was going on, the minute I was able to regain some control of my life, I made sure I knew everything that they were doing, why were they doing this. If there was a new medication I was given, why? Get the doctor to tell me why. I'm not just taking it because you said well I've got to take this. 

The only problem was with the Crohn's, I think because it's such a hard disease to explain, that's the only thing, the problem that I had. You know, you asked certain questions and they're still not answers that they can give you so'.

Did you look for any information once you got out of the hospital?  

Yes, I did, went up and looked on so many different sites. Crohn's you know, I think, and even I found that it was just as confusing. I think going to look for it was just as confusing as when I was in hospital and they were trying to explain to me what was going on. I did look up sites. My sister, my family looked up sites. I mean it's weird, once you have symptoms of something, you look it on the Internet or whatever and you compare your symptoms to other things and I think you always go for the worst thing that's there. So we probably, we thought was it bowel cancer you know, things like this so.  

One woman was unhappy with her tracheostomy scar and wondered if there might have been an alternative to a tracheostomy that left no scar. Like others, she wondered about the chances of her illness (pneumonia) recurring and now felt particularly cautious of any cold-like symptoms. A few people noted that information they'd received about treatments was sometimes inconsistent and this could be confusing and worrying.

 

He wanted to know whether his gall bladder would need to be removed but doctors gave conflicting...

He wanted to know whether his gall bladder would need to be removed but doctors gave conflicting...

Age at interview: 68
Sex: Male
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My enquiring mind is at a much simpler level. Which is, "I've still got my gall bladder. Does it need to stay in or come out?" And it's a simple question. And I get conflicting responses from the various specialists. One saying, "If it's shrunk and it's no longer operative, we'll leave it in. If it's full and flourishing, it'll come out, when you're strong enough." Now I've had a scan which tells me that it's healthy, flourishing. And they say, "Well, you know, it . . .". One then says, "Well, why does it have to come out?" And the other, another person says, "It has to come out because it could grow another gallstone." 

I said, "Well, you know, how big does a gallstone have to be?" "Well'.." "How many years? Because if it's going to take sixty years for the next gallstone to grow to that size, leave it in." I need a lot of persuading that it's in my best interest to take my gall bladder out. And that's when specialisms overlap or interface there's not necessarily good communications. I mean I have a stent fitted, which is to take out the kink, as you know. But there's debate as to whether that should be left in or taken out. The person who put it in said he could take it out. The surgeon who did the operation says, "Leave it in." And the stent man said, "Well, I've got to defer on this to the one who carried out the operation. That's her specialism." But it's a bit disconcerting when you think you get close to the specialist and there are different views being expressed, professional views on an informed basis.

ICU diaries
Most people who had been given diaries of their ICU stay, either when leaving the hospital or at a follow-up appointment, said they learnt a lot more about their stay after reading these. This included information  about the illness, treatments, changes and improvements, family reactions and visitors.

 

She wished she'd been given her ICU diary sooner because she learnt so much from it.

She wished she'd been given her ICU diary sooner because she learnt so much from it.

Age at interview: 55
Sex: Female
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But at the end of this particular follow-up ICU visit, after that conversation, shake hands, off you go, the sister of the ICU gave me a booklet or a file or a folder, sort of that size. That's it in fact, which is addressed to me. And this is a day-by-day diary of who the nurses were, who the doctors were that looked after me, what they were treating that day, etc. etc. And it took me about five minutes to read. And I read that on the bus going to the park-and-ride [laughs]. And I thought, "Why on earth was I not given this, if not before I came for my appointment for the follow-up meeting, just five minutes before I went to the follow-up?" Because it was full of stuff that I had no idea. Things, there was one thing where it said, "Your first day, we were concerned because your heart rhythm was very low, very slow, and it was an unusual rhythm called left bundle block." And I thought, "Blooming heck, what's that?" And then they started talking about the severe sepsis and so on and so on, these bits and pieces, that I heard nobody talk about. And I thought, "Well, now, the night that my kidneys weren't working on the ward and this doctor was asking me all these questions". One of them was, he kept saying, "Are you sure you haven't got any heart trouble? Are you sure?" To the point where I, when I left there I asked my GP, "Are you certain I haven't got any heart trouble?' Because he kept on and on and on about it. Now I know why. Because I had this. And if that had been given to me the next seven days before I could speak to anybody in Intensive Care and get the answers, I wouldn't have needed that anxiety.

Last reviewed August 2018.

Last updated November 2012.

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