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Intensive care: Experiences of family & friends

Sources of information in ICU

When a loved one is in intensive care, having information about their condition and progress can help reduce feelings of uncertainty, fear and being out of control. Here people talk about the information they received, wanted or looked for while the patient had been critically ill in ICU.

Most people wanted information on different things at different stages. When the patient had first been admitted to ICU, their main questions centred on the patient's survival and whether they'd be left disabled, brain damaged or paralysed after critical illness. This was often a question doctors were unable to answer because they had to wait to see how the patient responded to tests and treatments first. For many, waiting for this information had been traumatic and, at this stage, it hadn't mattered why the patient had become ill. All that had mattered was that he or she survived.

 

She didn't ask doctors why her husband was so ill because all she needed to know was whether he'd...

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Age at interview: 37
Sex: Female
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So they gave me a room and it was quite a strange situation because we didn't know what was wrong with him and to this day they still don't know what it was. 

But they were all very, very honest with me. The consultant that saw him mostly said, just kept saying, 'We don't know. I can tell you what it is not, because we have done tests, but I can't actually tell you what it is'. I never asked for a prognosis or a diagnosis, or is he going to be all right or anything because I think when they are in that situation, you know that everyone is doing as much as they can, but you know sort of having me there, saying well is he going to be all right, is he going to live and things, doesn't actually help. And I didn't need a diagnosis by that point. I just wanted him to get better.

One man's partner had pneumonia and a rare infection but to him all that had mattered was her survival. Another said he and his family just wanted his critically ill father to survive when he was in ICU and only learnt at a follow-up appointment some weeks after his father's discharge from hospital that he'd had a rare form of pneumonia. 

For most people this had been their first experience of intensive care. A few, who'd worked in the health field, had known a bit about ICU treatments and why patients are admitted to intensive care. One man was an ICU doctor so was very familiar with the intensive care environment and treatments. One man, a retired teacher, had known what to expect of intensive care because he'd visited a friend of his in ICU before, who was admitted after an accident. Another said his wife had been in ICU four times because of bowel related problems. Many said nurses had given them information about the ICU environment when the patient had first been admitted as well as information about the equipment the ill person would be attached to. Nurses had also been available to answer questions. 

 

Before she saw her husband in ICU for the first time, nurses explained everything to her about...

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Age at interview: 58
Sex: Female
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Did you know much about ICU at that time? 

Not really. I knew that it was, the department is where critically ill people go and they are looked after twenty-four hours a day and monitored twenty four hours a day, I knew that. 

And did you knew that he would be attached to lots of equipment? 

Yes, I think so. You just pick these things up along the way. So I knew they were going to. But I will say, while they were doing it I was actually' I wasn't there when they put the chest drains and things in because I didn't' a) I didn't want to get in the way and time is of the essence at times like this. And so they explained to me what they were going to do and I went away. And then they came to get me. And they said, 'Look, he going to be all wired up, you know, don't be worried, everything's doing everything for him. He's quite comfortable'. They were wonderful. Wonderful. 

At first, the most important questions for family and close friends had been whether the patient would survive and what quality of life they'd have. As time went on, people also wanted to know what was wrong with the patient, why they'd become so ill so quickly and how long recovery would take. Some people had wanted as much information as possible, others hadn't (see 'Receiving information and news from doctors'). 

During this extremely stressful time, relatives had mostly relied on information from doctors, which had often been explained in more detail later by nurses. Many people said ICU nurses had kept them informed, step-by-step, about the patient's illness, treatments, what they were doing and why. Many also felt that, because nurses had spent more time with the patient than doctors, they'd got to know the patient better. Most praised the information and explanations given to them, some saying nurses had often answered their questions before they'd even had a chance to ask them (see 'Nursing care').

 

Nurses explained to her in more detail what doctors had told her, and always phoned her whenever...

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Age at interview: 24
Sex: Female
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Because I'd had my baby I was at home in like at night-time. And I used to leave the hospital at midnight, so I didn't really get to see her anyway. But they [nurses] would constantly phone me if he got worse. I didn't want to know if he got better. I just said, 'If he's worse, ring me'. So they did ring a few times. But they were really good, always explaining. And I was always asking, 'What's this? What's that?' and they would always tell me. So, no, it's nice, they did, I felt they told you everything, even the bad, well they had to tell you the bad things. 

Sometimes when the doctors came to speak to us they would say like, 'Something's wrong' and sort of use a medical term. And during that time you'd want to ask but they were always so busy. I think even if we asked they would have the time, but you felt like you couldn't. So I used to always wait and then ask the nurses, and they would always explain to us. Which they were happy to do. And I think they're quite used to that, the doctors telling people and then they, the nurses tell you on your sort of level. And they were more hands-on with my partner, so they knew, and knew how to explain to me. So I could ask them anything and they would be honest, they would tell me the honest answer if they could. And then if they couldn't, they would just say they don't know the answer to that. So we always used to ask like, 'When's he going to get better?' They're like, 'We can't answer that'. But that's all you want to know. But you just have to take their advice and trust them, because they do only tell you the truth. Sometimes you thought they weren't telling you everything, but they were. But sometimes you did feel like they were hiding something. I don't know why. But then looking back, they just told us everything and made you sort of feel at ease really. 

One man described the support and information he and his partner received from an outreach nurse who visited them several times on the ward before his partner was actually transferred to ICU. Outreach services aim to improve the care of ICU patients on the wards and make the transition to or from ICU easier. Outreach nurses also aim to prevent patients from being sent back to ICU from the wards and to share their specialised nursing skills with other staff in the hospital. 

 
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Outreach nurses came to see him and his partner regularly before she was admitted to ICU and...

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Age at interview: 35
Sex: Male
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One of the things that [the hospital] did is they had an outreach programme, and on the second day I think these outreach, the nurses from Intensive Care, they go round the various wards and meet people who they think might end up being Intensive Care candidates, for want of another word I guess. But I remember our Intensive Care outreach nurse, a lovely lady who came to see us, well, it seemed like she was there sort of every hour. And she was really, really good. She explained a little bit more about what was going on and what was likely to happen and certainly prepared us for Intensive Care, which is obviously not a normal hospital environment for most people. So that element of it was really appreciated. And I know that's something that, from talking to the nurses, that not every hospital does. But from a patient and partner/relative perspective, it was, at that time it was a godsend. It was fantastic to have. 

Intensive care patients receive many medicines and some of these can cause nightmares and auditory or visual hallucinations. When the patient had regained consciousness (come round), some people had been worried about the ill person's mental health because they'd been very confused or hallucinating. Many people explained how relieved they'd been to learn from staff that this state wouldn't be permanent, and some had wished they'd been given more information about hallucinations earlier as this would have alleviated their anxiety. 

 

Seeing his wife hallucinating was very distressing and he wished he'd known more about...

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Age at interview: 57
Sex: Male
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They were keeping me informed all the way along the line. I didn't have to ask, apart from the night she was taken in. I didn't have to ask any questions at all other than when we found out that she'd broken her back. Because the accident happened on the Saturday. It wasn't until the Wednesday that we found out she'd broken her back. Then I asked questions of what happens and does she have to have an operation or. And they said, oh there's a possibility but they decided not to in the end. 

And you mentioned that your wife had been having hallucinations once she came around?

Yes. Well once she. Yeah once she started to come round she was having these hallucinations. Oh that was a nightmare. She wanted to go home. She said, can you make an appointment to see the doctor in the morning, that's our local GP. And she wanted to get out of bed and she said, 'Can I come to bed with you tonight? Can we go to bed now?' And she was kicking. 

Did you know she was hallucinating? 

I didn't at the time. No I didn't at the time because it frightened me quite a lot. So much so that I broke down in tears that night. I rang my friend back here in [our town] and I cried over the phone to her when I was talking. But it wasn't until the next morning that I spoke to the doctor about it and the doctor said, oh good I've been waiting for that. It's a kind of recovery. She says, you know these people that go in the desert and see hallucinations, it's part of the recovery process of the way, where she's been. I said you could have told me to expect it [laughs] which they didn't. 

Were there any other things that you wish you'd been told sooner? 

Not really, no. Because as I said they were keeping me informed all the way along the line. Because I was there every day, all day, other than going off for my, for my meals. I could see what was going on. They were telling me what was going on if there's anything out of the ordinary happened. 

Some people also wanted to know more about MRSA and why it was so common. This is a bacterial infection that mainly occurs in people who are already ill in hospital and can be difficult to treat. Some had been disappointed to learn the patient had got MRSA and wanted to know why. One woman had been extremely disappointed when she felt she'd been given conflicting information about whether her husband had actually had MRSA. Another said her sister had several infections in ICU and she wished she'd known how common infections in ICU were because this would have helped her to feel less worried.

After they'd regained consciousness, some ICU patients had needed surgery to help them with their recovery. Many relatives and close friends felt they'd been given plenty of information, sometimes by doctors and nurses and sometimes through written sources such as leaflets. Some had also looked for more information online.

During the early stages of the patient's critical illness, most people visited ICU every day, often all day, and hadn't had the time, interest or emotional strength to look for more information about the patient's illness. A few people did look for more information on the internet, though, because it had helped them to feel they were doing something positive. It had also helped them understand the condition better or had given them hope if they'd read about the experiences of survivors. One woman said she hadn't been given very much information about her mother's heart surgery after ICU and her daughter and sister-in-law had printed information from the internet for her. One man said he looked on the internet to check that the treatments his partner was receiving were the best possible. He also consulted other specialists in the hope that everything that could be done for her was being done.

 
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The doctors he spoke to, who were specialists in pneumonia, gave advice to the doctors treating...

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Age at interview: 35
Sex: Male
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One of the things that did go through my head was just whether [my partner] was getting the best treatment. And my understanding of Intensive Care and the doctors and the nurses is they're, obviously they're trained to cover all sorts of issues, illnesses, ailments, car accidents, whatever it would be. And I was concerned whether she was getting the right treatment for her condition. So I managed to get hold of someone at another hospital that specialises in this area and someone quite high up in this area as well, because he knew a friend of a friend of a friend type thing. And he talked to me. And that was in some ways good, in some ways bad. Because he definitely said, 'Listen, if this is the situation that she's in, she's in a lot of trouble.' But he did also say that, 'If you want to get the guys at the hospital to call, we can talk through her treatment properly and give some guidance from a specific, from a specialist hospital point of view'. And ultimately they did do that. 

I mean they did get in touch with this hospital and I think maybe they would have done that anyway or not. But they eventually got in touch with this hospital. And I think the hospital in question definitely advised that they adapt her treatment. The treatment that they were giving [my partner], they were saying was right, but they could sort of complement it by adding certain other things. So I don't know whether that was procedurally correct for me to do that or for this guy to talk to me. But at that stage I didn't care. I would have talked to anybody and paid whatever or done whatever to talk to people that would have given me advice beyond the advice I was getting just from the hospital I guess. I just didn't know whether that was a done thing or not. But I think it was a positive ultimately.

Some people received information from friends who'd researched online. One woman said she'd read books about the rare tropical disease her partner had and hadn't needed to look on the internet herself. Her friends had been using it, though, and discussed what they'd read with her. Some people had been put off by information on the internet because they'd found it frightening or too negative.

Some said they'd had friends or relatives who worked in the health field and had been able to talk to them about the patient's illness, both for information and support.

Planned admissions to ICU
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 a major operation. Planned surgery ICU patients differ from emergency patients in that they know they will spend some time in intensive care after their surgery. Even so, every patient's experience is unique and most people, patients and family, wanted as much information as possible before the surgery.

Many people told us how doctors had diagnosed the patient's illness and had discussed it with them and the treatment they'd need. Most felt they and the patient had been given lots of information about the surgery and most had been given the opportunity to ask questions or call a telephone number if they'd needed more information. Some had also had the opportunity to visit ICU before surgery.

 

Before her husband's kidney transplant, she read lots of information about the operation and she...

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Age at interview: 53
Sex: Female
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We have got lots and lots of information. And we read it all. We read everything that we could read and the anaesthetist was just wonderful. They ask every single question and the risk of anaesthetic is not, anything like now like I would have considered it to have been. So we just sat and hoped that it went well. But we did sit and sort of say a prayer and shed a tear for the person who had made the, donated, and the family that had donated the organ. That very much goes through your mind. And we just hoped for the best. And the nursing staff were very good. We were given our own nurse, who came with us to the hospital where we were transferred from one hospital to another to have the operation and we had one nurse with us who went through everything with us. 

Did you feel that there were any questions that weren't answered? 

No we asked every question we could think of. And everything was explained.

Last reviewed August 2018.

Last updated May 2015.

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