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.
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.
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...
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.
- 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.
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.
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...
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.
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.
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...
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.
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.
Last reviewed August 2018.
Last updated November 2012.