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Intensive care: Patients' experiences

Making sense of what happened

Critical illness can have a huge impact on a person's life, both physically and emotionally, as can the experience of being in an intensive care unit, including nightmares, hallucinations, confusion, not knowing what has happened and how much time has passed. Fear, isolation and a loss of control were common feelings among people who were ill or injured in intensive care, and it was often when they were back home that they had time to reflect on what had happened. For while the time in hospital was very much centred around their physical recovery, the time at home was an opportunity to take stock and heal emotionally. For many, making a good recovery also included making sense of what had happened during their stay in intensive care. Here people who were admitted to intensive care as an emergency talk about making sense of what happened. 

Everyone is unique and deals with major life events in different ways. When they regained consciousness in intensive care, though everyone wanted basic information about what had happened and their recovery, how much more they wanted to know after that varied (see 'Information: for people admitted to ICU for emergency treatment'). Some people wanted to know as much as possible with many details. Others wanted to know very little, preferring to focus on looking ahead.

Wanting to know as much as possible

Some people were sedated or unconscious in ICU for up to a month and wanted to know exactly what had happened in the time they'd 'lost'. Some had 'wanted to know everything', starting from when they became aware and orientated in intensive care. Others said they asked relatives lots of questions once they were back home. Many said that, although they couldn't do anything about the days, weeks or months they'd lost, knowing as much as they could helped explain where the time had gone and restored some sense of control. Different people wanted to know about different details and at various stages of illness and recovery' what had happened leading up to intensive care, when were they admitted to ICU, what did they do when they came round, what did they say, who had visited?

 

She was a nurse in the ICU where she was a patient, and asked questions over and over again in...

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Age at interview: 41
Sex: Female
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I think as I became a bit more orientated as well, I sort of started to ask lots of questions, had to know what had happened to me. I had to know everything from who'd been to see me, to what my relatives had been told by the doctors and the nurses, even down to looking at my own charts, just to convince myself how sick I'd been and how bad it was. I needed to know everything in minute detail, who'd been to visit, what they'd said, what I'd looked like, however gruesome it was when they told me I just felt like I had to know. 

I needed to know everything, every minute detail, and I'd ask things not, I remember asking not once but several times because you tend to forget what somebody's told you, so you need them to keep telling you these things. And then there's an element where you think, "Have I got that right? Did I really, did that really happen or have I dreamt it?" 'Cause you still, you kind of like being in a Twilight Zone it's, "Have I dreamt that or did it happen? Or is this real? Or have I imagined it?" So you need telling not once but several times, so I'm sure I mithered people till they were sick to death with me but if I did they never showed it. They always answered everything and, you know, it was always done, you know, they'd sit down, and they'd spend time talking, and they'd listen to me, and they'd answer me and, it didn't matter how many times I asked a question they would always answer it. And that continued even when I'd been discharged.

Making sense of dreams and hallucinations also mattered to some, particularly finding out what had been real or hallucination caused by the illness or treatments they'd been given in intensive care. For most people making sense of what happened was a gradual, fragmented process rather than one occasion or stretch of time when they 'pieced it all together'. Relatives, health professionals during and after their hospital stay, as well as ICU diaries all contributed to what one man called fixing 'the jigsaw' of his life.

 

He had no recollection of his time in hospital and talking to nurses who had looked after him...

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Age at interview: 58
Sex: Male
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I was trying to piece things together in my mind. I was trying to put right a jigsaw of my life, if that's the best way to describe it. And I needed to put pieces together to complete, as I was before. I know it's going to be a question of time but my life was built like a jigsaw. Several pieces fit into place and then your life becomes part of a big scheme again.  

Anyway, I did, I went to the ICU unit. I met one of the nurses and I remember her saying to me, she was the nurse that dealt with the toilets part of the patient. She had no qualms about it. It was a part of life. I hadn't considered that. Obviously if you're out then yes it has to be done. I'm, again I am a very private person and I did my own ablutions, and it was strange to meet this nurse who was readily to tell you that yes that's what she did for you. That wasn't part of the healing but it was something that needed to be done. 

I didn't meet none of the other nurses or any of the other nurses that dealt with my tubing, my breathing. But I have been told by my sister that I did actually die twice. And my lungs stopped twice so there are nurses there in the ICU unit that I've got to be grateful for because their reactions, their dedication made me here now. Yeah, I mean yes it's all part of this big puzzle. I am here now. I'm not 100%, I'm far from it but my puzzle is getting complete. And the fact the nurses like that, who are dedicated to their job, that have helped me piece together my life. They were part of my piecing structure. 
 

He was in intensive care twice and, on both occasions, found out from family, friends and medical...

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Age at interview: 37
Sex: Male
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But I got more from, I suppose, my family were coming in and just obviously, not telling me the whole story, but just telling me bits, how close to death I'd come. You know what the first week, how bad the first week had been, but I think, I mean I don't know if it's done on purpose but they [medical staff] obviously can't tell you everything straight away, one, because you wouldn't be able to take it in and two, because obviously they don't want to stress you out. 

They need to keep you calm and relaxed, so really it was piece... as I say the first time it was not knowing why I was there, what had happened to me, what procedures had been carried out, whereas the second time, it was a lot easier to, not understand, but I knew what I'd been through. And I knew why various things had happened. I knew why I'd had dreams or hallucinations and because I'd had them previously, I mean it didn't make it any easier, I still thought a lot of them were real and I had to discuss that with family and friends for them to say, no this had happened, that had happened, again through talking with the nurses once I'd got the tracheostomy, the tube had been taken out, obviously I wouldn't say I was asking lots of questions but you can generally pick things up from when the handover of nurses. You can, again you could glean a bit of information from that. So it was more of a long process rather than someone telling you in a day, "Right this is what's happened to you over the past month or so." So it was really just piecing it together as time went on, because obviously the problem is you're lying there. You've got so much time to think, you can sort of try and play it through in your mind but most of the images you had were images that had come from dreams that weren't real at all anyway. So I think it was more trying to sort them out, thinking well did that really happen, rather than thinking oh what have I actually been through.

Many people wanted to know how close to death they'd come, though found it an extremely difficult question to ask and subject to talk about. One woman said she 'needed to know' and asked her doctors. She also kept her own diary and wanted to regain a sense of control over her life.

 

Although she no longer looks at her diary, writing it all down when she was recovering helped her...

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Age at interview: 38
Sex: Female
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The one question I had to ask was, did I, well, did I almost die?" And they said to me, "Yes." I said, "OK." I said, "Could I have died?" They said, "Yes." I said, "OK." That was the hardest question for me to ask. But I had to know. I think you just have to find out. Part of the recovery for me was finding out everything that happened and I had to write it down. I've never been a person to keep a diary but I had to write it down. Do I look back on the diary? No. It's, this is probably the first time. I don't look back on it, I remember, I know what happened. But at that particular time I needed to write it down and to find what happened. I think that's the best thing, just to know exactly what happened to you and, you know, and I think, you know, just, that's it really, just to know what happened to you. You know, really, not to memorialise it but just so you... 

Kind of make sense...?

Yeah, make sense of it, yeah because I think ICU makes you not in control of your life, you know. So I suppose for me, to gain control of my life, I needed to know what happened. And what, you know, how, and that's yeah, basically it, really. 

Some said they had discussed their intensive care experiences over and over again with family, one woman saying she and her sister had talked the subject 'to death'. Others wondered if relatives had got 'fed up' with all their questions. Yet others recommended asking as much as possible because otherwise questions could 'play on your mind' later. One man consulted a medium to help him make sense of his dreams during intensive care.

 

She learned more about her ICU experience by talking to her sister, and about her husband's...

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Age at interview: 40
Sex: Female
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I think it's just something that I've got to come to terms with and I'm not emotional all the time, just sometimes. I don't really wanna be raking over it with somebody, I'd just rather, I mean, not my husband so much but my sister, we're quite close in age, and she was like, I think if willpower would have got someone through it, I think hers would have got me through. We have had post mortem after post mortem of this being in hospital. Every, I mean it's only been like recently that we've stopped talking about it. And I said to her, it was only a couple of weeks ago, "This is the first time we've seen each other and we haven't gone over everything that happened in hospital." So she said, "I know". She said, "How'd you feel?" I was like, "I'm glad, I think we need to put it to rest now."  But at first I wanted to talk about it, and I wanted her to tell me things. And only she could tell me things. And I said to her, "I feel so, like my husband was sort of like, well that was that and it's over with so let's just get on with things." And he doesn't say things, or doesn't say how he felt or anything. But she's like told me things, like how he was when I was in the hospital and how distressed he was. I mean he's not one for like crying but there were just points where it just got too much and he just had to get up and walk out. And when she told me things that are like, I know that he was emotional and that. But he had to like stay strong for the kids and everything.
National Institute for Health and Care Excellence (NICE) recommends that when you have left the hospital:
“If you needed structured support while you were in hospital, you should have a meeting with a member of your healthcare team who is familiar with your critical care problems and recovery. The meeting will be to discuss any physical, sensory or communication problems, emotional or psychological problems and any social care or equipment needs that you might have.
If you are recovering more slowly than anticipated, or if you have developed any new physical or psychological problems, then you should be offered referral to the relevant rehabilitation or other specialist service.” (NICE CG83 2009)

Focusing on the future

Some people said that, once they were back home from hospital, they focussed on recovery and 'moving on' from what had happened in ICU. One young woman, who had had an emergency hysterectomy, said she didn't 'try to figure it all out' but focused on her recovery and all she had to look forward to.

 

She wanted to focus on being well enough to be a good mother, wife and nurse instead of...

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Age at interview: 35
Sex: Female
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My main focus was to get myself better and just get back to being a mother, a wife and a nurse. You know, I wanted those things back into my life. I didn't want to be bedridden, I didn't want to depend on people for everything. Your family will get fed up with you if you're constantly dependent on them, you know, so I really was, my focus was to get back to being me so I can enjoy my son and also you know I just prayed and say "Thank you God, thank you for my life."  

You know somebody mentioned, one of the nurses said to me back then, "You've just lost four days of your life and what are you going to, how are you going to cope with that?" And I thought to myself well, I may have lost four days of my life being in hospital, but I've got the rest of my life ahead of me. I'm only thirty-five. I still have loads to do, I still have to bring up my children you know and I'd like to see my children also finish school, go to university, get married, have children, become grandparents you know, so I'm not going to dwell on four days of my life. I'm now, I'm leaving this hospital, I'm not still in hospital so that was my focus, was for the future and just looking forward to things happening. 

One man said a part of him wanted to 'know every detail' but another part to just 'move on'. He recommended discussing hallucinations with relatives to make light of them. Another said that, although he was 'curious' about what had happened, he had no 'burning or consuming desire' to know all the details.

 

For him, moving on and recovering included talking with relatives about what had happened and...

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Age at interview: 68
Sex: Male
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I've had to accept that whilst part of me wants to know every detail as to what's happened, there's another part of me which says, "Who cares? Life moves on." And when I say that I don't remember anything within the Intensive Care Unit, I find that the family will mention something. And I think it's important for them that they talk out their experience. Because whilst we've arrived at the same point today, their journey has been a parallel journey to mine but different. And they mention certain things and I think, "I remember that. I remember that." And yet if you'd have said to me do I remember what happened in the Intensive Care Unit? My first reaction is, "I don't remember." 

And I think it's important that I purge myself of some of the silly hallucinations, and I can put them, I can discharge them and get rid of them. I think that's important for whoever listens to what I have to say. "Don't be afraid of talking out your hallucinations, of being prompted by your family members, so that you can laugh about it." And we actually have laughed about it. And that's the best way of dealing with it, and you put it on one side.

Last reviewed August 2018.

Last updated November 2012.

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