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Intensive care: Patients' experiences

Intensive care treatments

One of the main reasons people are admitted to an intensive care unit is to enable health professionals to keep a very close eye on their progress. To do this, most people are connected to several different types of monitor, and drips which allow liquids to be passed through tubes in veins, usually at the side of the neck, arm or hand. Various substances are commonly used in drips, including drugs, fluids and liquid food. Most people will also have a urinary catheter, and require at least some help with their breathing. This is provided by a machine called a ventilator ('life support machine'), which takes over the work of breathing for patients, delivering oxygen, breathing rate and breath sizes in tailor made settings to the patient's needs. People who need less support for their breathing may still get oxygen but through a mask put over the nose and mouth. Other patients may have “non-invasive ventilation” through systems known as CPAP or BIPAP. These systems deliver high flow oxygen and support through a very tight fitting mask. CPAP and BIPAP are often used in High Dependency Units. Not all patients tolerate these methods as the masks can feel quite claustrophobic but, when they do these masks, can help to avoid full ventilation and intubation.

Most people had known little about the many different treatments they received in intensive care because they were sedated and, on coming round, too ill or disorientated to be able to take it all in. Very often they couldn't see what was happening around them but they remembered being attached to many 'tubes, wires and drips'.

 

He couldn't move much because he was attached to lots of equipment but always had good pain relief.

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Age at interview: 58
Sex: Male
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I had an oxygen tube across, up the nose, sort of a small one which they varied. They started off with a fair amount of oxygen and then they gradually decreased it. I had, ready for later on, a feeding tube down my nose. I had a drain, two drains in, one on either side of my stomach. There was a central line in. And I think there were, I'm not sure whether there were, I think there were canulas in my arms, which just made it, you just had to be very careful if you moved. But the nurses always kept a pretty good eye on that. So yeah, so I was, I was fairly well wired for sound [Laughs].

So were you wired for the whole three or four days? Or slowly being...?

I can't honestly remember when the central line came out. But that was after, I think they used that for most of the anti-biotics. And I think that came out on the third day. And the other ones, obviously the feeding tube stayed in and the oxygen gradually tailed off and sort of by the time I went up to the general ward I wasn't, I didn't have that at all. The canulas stayed in, and of course I did have the epidural still in as well and it wasn't until I think I went up to the ward after a while up there. I can't remember how many days, that I was switched over to a, I think it was on demand painkiller. The pain suppression was extremely good. I mean, I have to say that. And I don't think there was any time that, it was uncomfortable obviously and there were times when it was a little bit painful but there was no time when I didn't have something to relieve any sort of pain and like, I can honestly say there was not time when I was in agony, at all. 

People were affected differently by the equipment in ICU. Some couldn't sleep very well because of it, others had to be re-sedated to prevent them from pulling out tubes providing vital support. Yet others found the ICU noisy because of the amount of activity, alarms and bleeps. 

 

She was hallucinating and pulled out one of the tubes because she thought it was something on her...

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Age at interview: 40
Sex: Female
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And then another nurse come along and they were talking, and I don't even know what they were talking about but, to me, it was as if she were saying, she was saying, "I'm gonna kill her, she'll be dead by the morning, she'll not be here when you come in any more 'cause I". Oh I just really thought she is gonna kill me, and they were looking at something in the magazine together and they were laughing, and I thought they were laughing, that I was in the magazine and they were laughing at me. And I thought that I had a cat's nose painted on and whiskers and that I was in the magazine like that and they were laughing at me and I was thinking, oh, I felt my nose and I could feel this cat's nose on the end of my nose so I was thinking, I just wanna get this off, and I remember thinking to myself why isn't anybody telling me about this cat's nose.

So I started picking at it and picking at it, and I managed to pull off what I thought was this cat's nose. When the nurse looked up she nearly had a coronary herself. I had picked off, I had a tube up my nose into it, and it was taped to the end of my nose, and I pulled it off. I'd pulled the tube straight out, pulled the tube out but pulled a drip out of my arm. Blood was going everywhere and she wasn't watching me and when she'd seen, she had got a fright and were like fussing, but she was telling me off as well at the same time. I just really thought she was gonna kill me, I just, I did, I thought she was gonna kill me. 

Breathing Equipment
Although most people knew very little about the different medicines they received, they did remember having a big breathing tube in their mouths (endotracheal tube), which many found uncomfortable. Some recalled being 'suctioned'. This is when a nurse or physiotherapist passes a smaller tube down the tube to suck out secretions from the chest. Many patients don't like this as it makes them cough and can tire them out. One man recalled being sick when he first came round because the breathing tube had moved to an awkward position in his throat. Others had feared coming off the ventilator for the first time.

 

He appreciated being suctioned because it cleared his throat which helped him to breathe more...

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Age at interview: 60
Sex: Male
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My breathing, it was worrying the breathing side of it because you'd get this bubbling up inside you all the time and you'd have these nubulisers put in and your whole system seemed to be bubbling. And that was uncomfortable and disturbing, mentally disturbing as well as everything else. And the breathing wasn't easy and we had these, every now and again when you're having difficulties and you're getting a build up of phlegm on your chest, they had an apparatus where they could stick a probe down your throat, through the breathing apparatus which made you cough and it brings it all up, sucks it all out into a tube and you're usually clear again for a little while. And that was horrible to start with but in the end it became a comfort because you knew that, when you were in trouble, the chances are they'd do this and it would clear your throat. So that was quite good.

And eventually, you know, I might want one of these every two or three an hour perhaps and then it would occur to me that must be costing an awful lot of money to do that. It's funny what you think about. And I was thinking oh you know this really must be costing an awful lot of money but I've really got to have it. And then they were saying you must breath in a certain way and you didn't know if you were doing it properly or not.

 

She panicked about being weaned off the ventilator in case she couldn't breathe, but medical...

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Age at interview: 47
Sex: Female
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One of the doctors told me that I was coming off the ventilator for an hour or so to see how I'd go, and saw the panic on my face and reassured me that, "You will be able to breathe. You've been breathing since you were a baby. It's something that you know how to do."

And so they did take me off the ventilator for a short time. It was terrifying the first time, but after that it was okay. I then came off for a full day and then came off altogether. And that was very positive because the nurses were so pleased and so happy with me. I felt that I'd done something really clever because it was, you know, "Oh, well, done. You did four hours when we thought you'd only do half an hour" or whatever. And they were very, very supportive and very reassuring.

If someone is likely to remain on a ventilator for more than a few days, the breathing tube in their mouth is sometimes replaced with a tracheostomy, also referred to as a 'trache' or tracheostomy, usually before a person comes round. A tracheostomy is an opening cut into the trachea (windpipe) through the front of the neck into which a tracheostomy tube is then inserted. The placement of the tracheostomy tube stops air from travelling through the voice box, which results in the patient not being able to produce a voice. One man, who had a tracheostomy inserted because he became extremely uncomfortable with the ventilator, said he preferred having a tracheostomy. Many others found the tracheostomy uncomfortable, 'tight' or 'like a clamp' around the neck. 

 

He panicked because having a tracheostomy triggered memories from his childhood and his father's...

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Age at interview: 47
Sex: Male
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What people don't understand is the side-effects of certain aspects of that, i.e. my father died of cancer, he had throat cancer. And he had a full tracheoctomy, complete with larynx removal, and four weeks after that he died. When I came too, I had no voice and a tracheoctomy. And I thought, tracheoscomy, never get it right, so no voice and you couldn't talk. And panic set in. But not because of the pneumonia, because of, "My God, what else have they found?" So we obviously skirted round that issue. And we would find that, it's situations like that, that can bring back things, i.e. what's happened in the past can cause problems in the future.

I knew I was obviously, because I'd woken up with the tube in my neck as I call it. And it was most uncomfortable. Another thing that they couldn't understand why I found it so uncomfortable. But when I was in my junior school, and that's going back a lot of years, somebody had actually tried to strangle me with their rucksack. And I had to hit him rather violently to get him off. But basically it was the neck being crushed, and I've never liked a tight collar or not anything since then. I mean I've always had jobs where I've had to wear a collar and tie, and I wear them as loose as possible. But no one could understand my anxiety at this, basically a clamp around your throat. And you're trying to breathe and you're trying not to panic at the same time. So if people ever get into that situation, then, you know, you need to make your feelings felt. Because once I'd actually got those feelings over, they actually loosened slightly the crimping material that they hold it on by. But it is a very, very poor design.

Having a breathing tube or a tracheostomy usually means that people can't talk, and many discussed the difficulties associated with communication. For one man it was particularly difficult because he was temporarily paralysed and couldn't use his hands either. Others remembered coming round, trying to communicate by writing and discovering they were too weak to do so. 

 

She communicated by nodding at letters in the alphabet but found this slow and frustrating.

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Age at interview: 35
Sex: Female
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So when you have a tracheostomy you can't talk. So not only could I not move and not do anything for myself and couldn't sleep, but I couldn't actually communicate with anybody either other than kind of. You know I would just carry on talking and hope that somebody would be able to, you know, I would mouth the words and hope that somebody would be able to understand what I was saying which my husband became very good at. Other members of my family were just quite frustrated by it understandably. And I would get frustrated. And just repeat myself endlessly. It was kind of like the, sort of the silent version of when you go into a foreign country and just kind of talk louder if somebody doesn't understand you. I would just repeat myself and repeat myself. And we tried to do sort of, my husband sort of brought in a kind of alphabet and we tried to do kind of pointing at the alphabet and try and spell out words which, when you describe it now, sounds incredibly easy, you know. He would kind of point at a letter and I would either nod or shake my head or blink my eyes or something but you never really got much beyond a kind of four-letter word and then it would all just become too much effort or we'd lose where we'd got to. So that was incredibly kind of frightening and frustrating. 

One woman had a speaking valve inserted into her tracheostomy which allowed her to communicate. Others discussed how they felt when they had their tracheostomy removed and could talk again.

 

She felt very emotional when she spoke to her grandfather and mother for the first time since...

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Age at interview: 44
Sex: Female
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Can you remember when they took the trache...?

Yes, yes. I remember it was a Saturday and it was a different doctor on that had been on all week. And they'd, on handover in the morning, the nurse had said, "She needs it taken out. Let her see what happens." And they come in and I remember thinking, "I hope they're going to give me an injection to make me a bit dopey or something." Because I still had this vision that it was some great big thing in my throat. And they said, "No, [participant's name] it will just be taken out and a plaster put over the hole." And when they'd done it, I can't, to this day I can't explain the relief, how pleased I was with myself that I'd done it. Even though I was still on a mask with oxygen, I'd actually done it. And I remember that day the phone, my grandad is still alive, and he used to ring every day to see how I'd got on. And that day he rang and they give the phone to me and I spoke to him. And that there, well, it was very emotional, and then in the afternoon I'd had, like my husband and my daughters had been in, and my mum was coming in, and they never told her I'd had it taken out. And she come through the door and I spoke to her. It was, I've never, I felt so proud of myself that I'd proved them wrong. They'd said, "You'll be here till Christmas." But I'd done it. And I think once that was done I realised that, "Yes, I can do it". 

Because people with breathing equipment couldn't eat or drink, many recalled how they craved for drinks and, when the equipment had been removed, how they were encouraged to eat. 

 

She craved fruit juice and was gradually allowed drinks and, later, on a ward, soft foods.

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Age at interview: 35
Sex: Female
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Another feature of intensive care was being incredibly thirsty and obviously I was on a drip being fed and kind of 'fed and watered' as it were. But I was unable to take anything through my mouth. And I remember waking up and being obsessed with fruit juice for some reason. I mean not kind of water or tea or coffee or anything like that. I just desperately wanted a glass of fruit juice and I wasn't allowed any. I wasn't allowed any water even. The best that you were allowed was sort of a pink sponge on the end of a stick that was wet that you could sort of suck on. And that was all because they were worried about my ability to swallow because obviously I had this big tube in my throat. And so I worked, slowly the speech and language therapists came and worked with me and we had to do all these swallow tests with blue water and things like that. And gradually it was kind of like a little competition because later on I was on the ward, the lady next to me kept failing her whatever it was, blue water test and wasn't allowed a cup of tea and you know. If you passed it you were allowed a cup of tea or a glass of water or, further down the line, a yoghurt or some Weetabix. So that again was you know, something that you just had to kind of relearn how to do in very, very small increments. 

One man was re-admitted to intensive care when he had breathing problems on a general ward. Another said he'd had problems with his tracheostomy tubes three times and had them replaced on each occasion.

Some people discussed the small scars they'd been left with because they'd had a tracheostomy. For some, the scar was a reminder of all that they'd successfully overcome. Others noted how well their scars had healed, though one woman was seeing a plastic surgeon to improve the appearance of hers.

 

At the time she worried about having her tracheostomy removed, but now the scar reminds her of...

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Age at interview: 46
Sex: Male
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Patient' The minute they did the trachy and that's when I, the recovery started really wasn't it because they were waiting for, the blood wasn't clotting properly so they couldn't do the trachy till, and I know Professor [name], mine's a little scar with two like marks and he said to me "I'm sorry about that, I usually do a neater job but we were in a bit of a hurry." And I really, I know some people who've been in intensive care who really don't like the trachy scar and they're really self conscious about it. But I've got over that haven't I and when I'm stressed I touch my trachy scar and I laugh which is a big move on for me because I do take myself too seriously [laughs] sometimes. And I do, it's sort of I'm a bit proud of that, I think well that's what got me back you know. And when I get daft emails or somebody says you know oh I'm so stressed my cushion covers don't match I laugh you know which is good for me because I wasn't like that before was I?

Partner' No.  

When did you have the tracheostomy, can you remember when they took it out?  

Patient' They took it out, that was only, it was about a week before I came out of hospital wasn't it?  

Partner' They took it out just before you went down to HDU? 

Patient' No, no it was the day, it was the day after I went to HDU so it was literally about four days before I came out of hospital and that was terrifying, literally terrifying because we talked about it didn't we and the night before they said they were doing it [partner's name] said to me "Please don't be worrying." He said "What's the matter do you think you're going to be gasping for breath?" And I said "I do." 

Drug treatments
Most people acknowledged that in intensive care it wasn't possible to get involved in decisions about their treatments. Many said they didn't know enough about the drugs or were too ill, weak and confused at the time. Some people hadn't been able to communicate with the staff, and so trusted the doctors to make the best decisions about their treatment. One woman who'd worked as an intensive care nurse, however, discussed in detail all the treatments she'd received. Another remembered being given a new drug as a last resort (which has since been withdrawn).

 

Because of her nursing experience, she fully understood what had happened to her and the...

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Age at interview: 41
Sex: Female
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On the Intensive Care Unit I was ventilated and from what I've been told when I was first admitted to the Intensive Care Unit I was on a hundred percent oxygen. I was on maximum ventilation really, they had to put me on pressure controlled ventilation because I had such bad pulmonary oedema. And they said that the pulmonary oedema was just flowing up into the ventilator tubing. I was very hypoxic even on maximum ventilation, on a hundred percent oxygen and they did even consider prone ventilation, which is where they turn you on your tummy. It wasn't as widely used then as it perhaps is now and I think a few different units were trying prone ventilation and others were trying nitric oxide. But we were trying prone ventilation quite often and it tended to either work very well or it didn't work at all, so they did consider that but before I, they got to the stage of actually doing it I did start to improve. My oxygen levels did start to go up so they decided to just hold off. And luckily I didn't need that. 

The staff have told me that when I was admitted I was on dopamine, and adrenaline on quite high doses. I also needed boluses of inotropic support to support my heart and circulation. I was also commenced on haemofiltration because my kidneys had packed in, more or less straightaway. So I was put on to the haemofilter to support my kidneys (and fluid balance) but also to try and filter out the toxins from the sepsis as well. 
 

Her husband made the difficult decision of consenting to her having a new drug.

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Age at interview: 40
Sex: Female
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So they were just like God no, and he [the consultant] said, "The only thing we could really do now is there's a drug called Xigris, now we hadn't got it in the hospital and we've never used it before, but we can order it in, but you've got to understand that it, it is new and one of the side-effects of it could cause an internal bleed, either in the brain or internally, in which case that's really all there is to it then."

So [my husband] was like really upset and he was saying to my sister, "I don't know what to do now because they're asking me to make a life choice for her, do I just like let her like try and fight now, she's not responding." They've given me three lots of antibiotics, they kept on saying, "She's not responding." And then he said, "Before they said about the Sepsis." They said, "She's not responded to three lots of antibiotics. We think the pneumonia might be secondary, there might be something else and we're going to give her a cat scan."

So my sister and [my husband] were like, "Do that." So they come back and said, "We can't find anything else, she's showing signs of Severe Sepsis". So [my husband] was like, I could say yes to this and she could be dead, 'cause it could cause a haemorrhage or something." So [my sister] said, "You've gotta give her a chance now because she's damned if you do and damned if you don't, so you've gotta give her that chance now." So [my husband] was like really upset and couldn't cope with it all and he signed the consent form, he said, "Yeah, give her the Xigris." So that went on for a few days, but I just didn't like really do much, I mean I didn't have an internal bleed or anything but it did stop it like spreading a bit.

Several people talked about individual drugs, such as morphine. A few had hallucinations because of it and chose to be weaned off morphine. Several others recalled the pain they'd had during medical procedures or physiotherapy.

 

She would rather have a bit of pain than hallucinations caused by morphine.

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Age at interview: 57
Sex: Female
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At that time were you having hallucinations as well? 

Not, not then. No. No. I only had those for two or three days after I came round, you know, came out of the sedation because I just didn't like the you know, the thing, you closed your eyes and what have you, you could see, I used to see Alice in Wonderland and you know the Mad Hatter. I used to see these huge great big rabbits and things like that. And like the big black holes, although it was light but it was a big black hole, but you could see into it. And things used to move so fast. Lights used to go past so quickly and it was just a horrible, horrible feeling. If that's what taking drugs does to you, then no thank you very much. Not for pleasure.

Did you know it was the morphine?

That's what I gathered it would be because obviously most drugs can, could give you some sort of side effects. But I did manage to ask somebody what it could be and they said, "It's probably the morphine." And then, you know, I said, "Well I don't like it." But they said, "You need it for the pain." I said, "I'm sorry but you're going to have to give me something else. I cannot, I'd rather be in pain than have that." So they gave me Tramadol. They managed to take the morphine away and give me Tramadol instead.

Was that just as good for the pain?

It was not quite as good but, as I say, I'd rather have a bit of pain than, than live with those hallucinogenic things. They were horrible, horrible, hated it.

One person said that his wife discussed his treatments with doctors and they decided to make changes to them because they were affecting his moods. Another recalled how, despite being so weak, she wanted as much information as she could manage. A man who'd had an extremely rare infection said he had to make a difficult decision about surgery.

 

The less drastic amputations that he consented to are now gradually healing.

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Age at interview: 71
Sex: Male
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Before I left [city] when I was very poorly, my wife and my two children were called out, and I remember them being called out by one of the physicians to tell them how dreadfully ill I was. And then they came into me, it was, I think there were four surgeons there as the doctor who spoke to me painted a very bleak and black picture in fact which concerned [laughs] me somewhat even though I wasn't, you know, fully compus mentus.

But they wanted there and then really for me to decide to have my hand and both my feet amputated. And I said no. I said I'd wait and see how I got on. And fortunately it was the right decision because within a couple of days I felt that much better and, as I say, [consultant's name] took me under his wing, took me down to [city]. He's a brilliant chap really. And he skin grafted my hand because the back of my hand was completely eaten away. And the first graft didn't take. Then he did another which did take and is almost healed now. And he amputated one of my fingers. Took off one of my fingers off my left hand there and then.

And subsequently I stayed in hospital until February and then he let me out for about a couple of days, you know, which was very good really. It's nice to go home. And then I went back in and they amputated my toes. And again they are healing up very well. It's the pressure sores on my heels really that are causing, you know, the most problem at the moment but they're improving. And then he finally. And then I came home again after that. Then he had me in just for one day for a local anaesthetic and he took the tips of two other fingers on my right hand. And he doesn't want to see me now until the middle of September.

A few people said they got infected by MRSA whilst in intensive care and some of them complained about the standards of hygiene and cleanliness. 

 

What is a care bundle?
Care bundles were developed to help achieve standardised health care and best practice. Care bundles are a collection of interventions (usually three to five) that have been recommended as best practices, based on evidence, in the treatment and management of a particular condition. By putting these interventions into a bundle, it is hoped that this will produce a standard approach to delivering core elements of care which will reduce risks for patients. What is in each bundle will vary and it is not intended to be a comprehensive list of all care that should be provided, but should form the basic level of care that should be expected and must be adhered to for every patient, every time. All the tasks are necessary and must all occur in a specified period and place.

Last reviewed August 2018.

Last updated November 2010.

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