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Intensive care: Patients' experiences

Planned admissions to ICU

People are admitted to intensive care units because they need constant, close monitoring and support from equipment and medication to keep normal body functions going. Various professionals, including doctors, nurses and physiotherapists, work in ICU to care for the individual. Although most people admitted to ICU have an unexpected life-threatening condition, some are admitted after planned (or elective) surgery because they need special support and care after an operation. Elective surgery ICU patients differ from emergency patients in that they know they will spend some time in intensive care after their surgery. Even so, everyone's experience is unique and how much an individual remembers of their ICU stay varies. How long they spend in hospital also varies, depending on the nature of the illness and the demands on the unit and ward. Here people talk about their experiences of intensive care after having major surgery.

In some cases, before going into hospital for planned surgery, people are given the opportunity to visit ICU. This is also a good time to ask questions and get information about the illness and treatments (see 'Information: planned admissions'). One of the most noticeable things in ICU is the amount of equipment used and this can be frightening to anyone who isn't prepared for it, including family members when they visit. Some people said they were offered 'a tour' of the unit so that they could prepare themselves for the equipment they would be attached to when they came round after surgery. Whether an individual wants to visit ICU before surgery, though, is a matter of personal choice. 

 

He felt safe in the hands of the healthcare professionals and chose not to visit ICU before...

He felt safe in the hands of the healthcare professionals and chose not to visit ICU before...

Age at interview: 58
Sex: Male
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Yes, I was nervous, I suppose, yes I was apprehensive, I mean, after all, you're told that the chances of surviving this operation are percentage-wise 90%, which is pretty good, but, as opposed to a lot of other operations which is 95%. So there's more of a chance of something going wrong with this operation.

I can't say I was, thinking back on it, I can't say that I was actually nervous. I mean, you'd be stupid if you said you weren't apprehensive about someone sort of basically cutting holes in you and fiddling around with your insides but the attitude, I think, the manner of the surgeon and his staff was so compitent, professional, that I didn't really have any worries about it at all. I mean, at the end of the day, if I didn't have the operation then I faced death, quite frankly. So, what's the point in being worried about it? You know. If the operation didn't succeed I wasn't any worse off. But I could be a hell of a lot better off. Which I am.

We were given the opportunity also, we were told that I would go into the Intensive Care Unit after the operation as a standard procedure anyway, so, you know, that sort of reassured my family and me, that something hadn't gone wrong afterwards. 

We were given the opportunity, if we wanted to, to go and see the ITU. In point of fact we didn't because we were reasonably well aware of what went on in there and I suppose in a funny way of putting it, it didn't seem to me that the ITU was a place for a sightseeing visit, really. 

I was quite happy for the staff to do what they were doing and I'm afraid I'm a person who relies on the expertise of others, and these were obviously very expert people. So I just placed myself completely in their hands, really.

 

He was glad he hadn't visited ICU before surgery for cancer because it might have made him more...

He was glad he hadn't visited ICU before surgery for cancer because it might have made him more...

Age at interview: 63
Sex: Male
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So when you were going for the operation, did they say you would be spending a few days in Intensive Care?

Yes. Before the operation they said you will of course go, after the operation, which was fairly late in the day. I was last on the list on a very busy surgeons' list. They said you will go into recovery and then you will probably wake up in Intensive Care. And I think that's what happened. All I remember is waking up in Intensive Care.

Had you been offered the chance to look at the Intensive Care Unit and, just having...?

No, I hadn't. And I'm not sure that that would have helped me particularly because I might have found it a bit alarming actually because, as I say, there are all these machines, a very, very high population of machines and bells and lights and drips and drains and people in there of course, not at their best.

So one could only have visited pre-op and I might have found it a bit daunting. As it is, you wake up and you're drugged and you're not in top form after the op and I was on self-supply morphine.

Did you know that, when you would be in Intensive Care, that you wouldn't be able to move very much because you've got...?

I didn't take that on board, though God knows I've watched ER often enough [Laughs]. 

I didn't really understand that. And again I'm not sure that it would help to be told all the things that might happen, and might go wrong in Intensive Care. I think probably the way it was done, they said, "you will go to Intensive Care." The way it was done was probably the right way for me. I don't think I would have been reassured to know that I was going to have a urine bag, a blood supply, a wound drain, oxygen. There were others, a main line into the artery. You're fairly tethered and I don't, I wouldn't have liked to know that in advance because in advance of course I was as mobile as I am at the moment. When you're in Intensive Care, all that doesn't matter as much because you can't do physical training there, you know.

 

He felt reassured because he'd seen the ICU before having surgery and had met one of the nurses...

He felt reassured because he'd seen the ICU before having surgery and had met one of the nurses...

Age at interview: 71
Sex: Male
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At what stage did they show you the Intensive Care Unit?

The first, the Sunday night previous, and I had a good view right the way round and met some of the staff, one of the lady's come up, the nurse, and said, "I'm the one that will be looking after you tomorrow." Of course, I don't know who looked after me when it did happen, that was weeks later.

And was it helpful to see the Intensive Care Unit before? 

I think so, yes. It could have been me being nosy but yes I did want to see where I was going to go because I had the vision of me being, waking up if you like in Intensive Care with all these tubes, they told me, you know, don't get worried about all the noises but it didn't happen, so yes I can remember going up to the, seeing the Intensive Care Unit and I thought it seemed to be very well run. And the staff there, you know, you [to wife] spoke to all the [laughs] staff probably more than I did 

Oh yeah I think I got enough information, I never got much information in respect to Intensive Care but would I have done if I hadn't have volunteered to go up and see what was happening up there. I don't know but they came down and asked me if I'd like to and of course the second operation they also came down. And I said well I've already seen it for the first operation, I feel as though I'm wasting your time. But I could have still gone up there if I'd wanted to. And probably if I hadn't have accepted the invitation, I might have a got some questionnaire or something through saying this is what happens, but I'd rather see it you know, there's nothing to be frightened about.

And did you, at any point, have any questions that wanted to ask the doctors or the nurses?

In Intensive Care or in the general ward?

Before you went in to Intensive Care and generally?

I don't think so because it was explained to me, you know, even pointed out one of the beds, you'd be in that one. And don't be worried if you wake up because you'll have tubes coming out here and in the back and well, other places where everybody you know all these tubes are going to come from. And that was all explained to me anyway and I, you know, was told that the majority of the tubes I wouldn't even feel.

Many people discussed the operation they'd had and then their short stay in intensive care. Some had had heart problems. One man had been in intensive care twice before, after a heart attack. More recently, he'd had a heart transplant. Although he was given enough information about his treatment and hospital stay, he felt that was unprepared for all the equipment used in intensive care and hadn't visited the ICU beforehand. 

 

He was surprised when he first came round at how big and uncomfortable the breathing tube was,...

He was surprised when he first came round at how big and uncomfortable the breathing tube was,...

Age at interview: 67
Sex: Male
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I was gradually deteriorating. That's why I was referred for a heart transplant to the Scottish transplant unit in [city], and they said that I had too many problems and they would not attempt it. But my consultant at the [hospital] in [city] said that he would try [another city] for me. So he tried [city] and I went to [city]. I was there for four days for assessment and they said, "We're quite happy to go ahead and do the operation, but the decision has to be yours." You have a meeting with surgeons, nurses, Intensive Care nurses, social workers, physios, you know, the whole team who operate around the transplant. And each of them tells you what their part of the thing is. And they explain fully everything that's going to happen, and then you have the decision whether to go ahead or not.

And the doctors talked about the risks and the benefits, and then the choice was yours?

Yes, although it was really Hobson's choice because it was, "Either have the transplant or die very shortly." I would have been dead, I would have been dead for around eleven years now.

So you then went for the operation?

Yes.

And when you came to you were in Intensive Care?

Yes. 

So you knew you would have a ventilator?

Yes.

But was it still quite a shock I suppose to have the tube?

Yes. I hadn't realised it would be so big. It's really quite a thick tube. 

And you come to and the big thing that I did not like about that was waking up with this great tube down my throat, you know. It was really most uncomfortable. My first instinct was to sort of panic a bit, you know, because you feel, you know, "How can I breathe with this thing?" you know. And of course the thing is there actually to help you to breathe. You have to sort of exercise a bit of self-discipline and try to discipline yourself to actually work along with the thing and breathe, but it's most uncomfortable.

Another man, who'd also gone into ICU after heart surgery, had watched an information video beforehand and knew what to expect. His main concerns were about having a catheter

 

He felt that everything about the surgery was explained thoroughly but would have liked more...

He felt that everything about the surgery was explained thoroughly but would have liked more...

Age at interview: 43
Sex: Male
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So it was a triple heart bypass.

So you knew you were going to be in Intensive Care and what you thought was indigestion turned out to be quite serious?

Yes, yes. Heart disease. I had three blockages in the artery, part of the arteries that feed the heart itself, so I was quite lucky really.

And what did the doctor explain to you would happen?

He explained everything, he explained it very thoroughly. I was then referred to a cardiac nurse from [place name] who came to see me twice. She explained everything properly. I then went in to [city] itself and the hospital and everything was explained to me apart from one thing, and I was really worried about it and I wouldn't ask, and it was the catheter.

And I was so worried that I'm thinking, I'm not going to have the operation because I thought it was an invasion you know. And so the night before the op I asked a patient who'd had the operation, "What was it like when you had the catheter?" and he said, "Well you won't know, you're asleep by then", and that was [makes phew sound] so I should imagine there's loads of men worry about that, not prepared to ask because it's a private question and I should have asked first thing really. So that's my advice to anybody, if you're worried about the catheter, you're under the anaesthetic when it happens, so you don't know a thing. And that was basically my main worry because I knew if I didn't have the operation, the future, well there was no future.

Did you get to see it before you went into hospital at all, the ward itself, where you'd be going?

No, I saw it on video. That was the preparation. I should imagine it's the travelling again, if it's in [local town] they could prepare you better for this is where you'll be. But you know you just can't afford the whole day to go to [city]. 

He also discussed his concerns about whether he'd survive major surgery and said that being ill and going into hospital can be a lonely experience. 

 

He might not have survived surgery to see his children grow up, he now wants to make the most of...

He might not have survived surgery to see his children grow up, he now wants to make the most of...

Age at interview: 43
Sex: Male
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You feel you're lonely, even though you're surrounded by people and friends, sometimes I felt I couldn't talk about my innermost feelings to my wife because it was so personal really and I didn't want to burden her either. There was one good friend who I could talk about and things, no two actually, two, who I phoned the night before the op and if anything happens, please look after my wife and children, you know. Because that's where I was really before going to the hospital.

And one of them said, oh don't, you'll be fine, but you can't guarantee that so...It was like, I hadn't made a will or anything but it was like making a will, please look after my children, you know, and my wife. Just if you are in that lonely place, speak to somebody. Well I got through it and it's changed my life around.

There is one element of this operation that, well you've got nothing to worry about. It's happened so often now. Don't worry, you'll come through it. You know, at the time, I felt like hitting people who said that to me because it wasn't them that was going there. It was me. And from a psychological point of view as well, I don't know if anybody else has told you this as well, my wife and I had a discussion about it at the beginning of the week actually when she knew you were coming, it's only, even though she was very supportive and very strong and you know got through it together, it was only me who went through the op.

But she knew she was going home. She knew she would most likely see her children growing up. I didn't know at the time. So psychologically now, I feel I've become a little bit more selfish. It's hard to explain but I'm here now and I want to make the most of it, you know?
 

Some people had planned surgery because they'd had cancer. One of these men said he went into intensive care twice. He was first admitted after surgery, and this was a planned admission. Because of problems while he was recovering on a ward, however, he had to have another operation. Complications during this surgery led him to being admitted to ICU again - this time it was an emergency admission. 

 

He remembered waking up in ICU eight days after having a second operation.

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He remembered waking up in ICU eight days after having a second operation.

Age at interview: 62
Sex: Male
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They planned an operation to actually remove the oesophagus, because that was the only way to guarantee that you would be clear of cancer. The operation was planned for June of the year 2004. That sort of subsequently came and I went in and had the operation. The operation was very successful. I had two nights in intensive care, which was planned for the operation, and then went back to the ward and the doctors came round and told me everything had gone really well. 

And I was scheduled to have another operation two days later, because with this particular operation, I had a feeding tube in my stomach and my stomach had become quite distended and the prognosis was that I had a blockage to the feeding tube. So the idea was to take me in and have the operation two days later, which they duly did. I went down to the theatre, and everything was going to go, to be fine. And the next thing I remember was eight days later waking up in Intensive Care in another hospital. Apparently I had a blockage in my bowel, which then perforated, and they found something like 5' litres of liquid in my stomach. Which then created the problem of trying to resuscitate me. So in the end they had to take me from the independent hospital back to a National Health hospital with Intensive Care in an emergency ambulance. They had to wait for an ambulance with a ventilator, because I was on a ventilator. And I then spent eight days in Intensive Care to start with. I don't remember much about that. I remember certain things, but very vague. 
 

For one woman, surgery to remove her kidney was a particularly delicate operation because she had spina bifida. She explained how she felt whilst waiting for a bed to become free so she could have surgery. 

 

She prepared herself psychologically but her first date for surgery was cancelled because of a...

She prepared herself psychologically but her first date for surgery was cancelled because of a...

Age at interview: 43
Sex: Female
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I was in hospital because I have problems with my kidney. And it was agreed with the consultant that he would remove my kidney. And because of my impairment [spina bifida since birth], it meant that he would have to remove the kidney from a different position and would have to collapse a lung. And so he would be going to have to arrange for me to go into Intensive Care after the surgery. So I knew that was going to happen, so that was one good thing.

How long ago was this?

About 1998. And the worst thing was actually waiting for a bed to become available because you get yourself geared up to have surgery, and then it had to be cancelled because there were actually no Intensive Care beds in London. And in fact, on the day that I had the surgery, I took the last Intensive Care bed, in north London. And so that's quite traumatic to know that on the very day, you might, you know, it might all go horribly wrong and you might not have the surgery.

One man discussed how he felt when his first date for an operation was cancelled although he was already in hospital. 

 

His operation was cancelled to make room for an emergency, and he felt frightened during the...

His operation was cancelled to make room for an emergency, and he felt frightened during the...

Age at interview: 71
Sex: Male
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I had a bed, I was prepared, I got the injections, I was the first on the list, eight o'clock. And the surgeon came down and said, "[Participant's name], we might have to cancel the operation, we've got". I think he'd either got two emergencies and by nine o'clock, I think it was about nine o'clock, I knew I wasn't going up that day and that's when the ward sister came round and said, "What do you want to eat?" I knew now I wasn't going for an operation. She said, "I do apologise". I said, "It's not your fault." I said, "My giving up my place may save somebody else's life." Which I would have looked on the other way, if it had been me, I would have hoped someone had thought, felt the same way. But his had burst, the same operation but that was it, so I had to phone up my wife and she had to come and pick me up and bring me home.

I was apprehensive because I know you build up for an operation and then told you're not going to get the operation and I thought well it might be another two weeks before it happens, of course it wasn't two weeks, it was nearly six before I actually went in for the op and I, and of course that's just as bad as, you know, am I going through this again. And I can honestly assure you, my wife will agree, I was the second one, I don't know about the first so much, but I couldn't, I was like this [shaking] all the time, I was getting terrified. It was probably the build up, I'd thought well if this happens again I shall feel like saying forget it.

Most people were happy with the information they received about their illness and treatments and many praised the staff that had cared for them (see 'Information: planned admissions').

Last reviewed August 2018.

Last updated February 2013.

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