Intensive care: Experiences of family & friends
Emergency admissions
People are admitted to intensive care units (ICUs) because they need constant, close monitoring and support from equipment and medication to keep normal body functions going. In some hospitals ICUs are called intensive therapy units (ITUs) or critical care units (CCUs). Critical illness is different from any illness that most people are likely to have encountered before. It is often unexpected and sudden, and can strike the previously fit as well as the frail. It is often life-threatening and high levels of treatment and support may be needed, especially in the early stages. People with critical illness basically suffer from failure (and/or dysfunction) of one or more of their body's organ systems such as the heart, lungs, kidneys, liver, or even the brain. All of these organs work closely together in the healthy body, so it is not surprising that when one fails, others often follow. This is called multiple organ failure. People remain in intensive care for varying lengths of time, depending on the nature of the illness, and receive 24-hour one-to-one nursing care and monitoring.
Here men and women talk about the emergencies that led a family member, partner or close friend to intensive care.
Emergency illnesses
There are many reasons why people are admitted to ICU. Severe infection (sepsis/ severe sepsis, meningitis, pneumonia), stroke, cardiac arrest (following resuscitation), poisoning, complications following surgery, major trauma from road traffic accidents and burns are all examples of critical illness. Most people said the onset of the person's illness before ICU admission was rapid and unexpected. Many worrying things happened very quickly and they were uncertain about what was actually wrong.
Many people we talked to described symptoms which hadn't caused them any alarm at first but which had been followed by a sudden unexpected deterioration. Some had been unsure whether to insist on their relative visiting the GP because they hadn't expected things to be as serious as they'd turned out to be. Because nothing like this had ever happened before, many had believed the illness could be treated at home with medication. Those who'd visited a GP or called out doctors or paramedics explained that health professionals themselves had also believed the illness would be treatable at home. Sometimes, when several approaches to the GP had not provided a solution, the relative had called 999, 111 or NHS Direct for advice. One way or another, when the person continued to deteriorate, they were sent to hospital.
People described the panic as they realised how serious the situation was and their attempts to do something about it. One woman described how her sister-in-law, who had been trained, tried to resuscitate her mother who had collapsed.
Sometimes the deterioration occurred while the patient was already in hospital and they had to be transferred to ICU in the same or, sometimes, another hospital.
People were often surprised and shocked to be told quite unexpectedly that their relative's condition had become life threatening, requiring immediate transfer to ICU and possibly an emergency operation.
For most relatives this was their first experience of intensive care, though one man said his wife had been admitted to ICU four times in eight years because of bowel related problems. Another said his wife's bowel problems had led her to have two operations within a very short space of time.
In many cases there had been no warning signs before the condition that needed emergency treatment had developed. One woman said her husband had collapsed at work. Her niece had broken the news to her but she only realised how serious it was when she saw him in hospital. He was later diagnosed with a brain aneurysm.
A few people explained that family members had been admitted to ICU because of very rare conditions, sometimes illnesses they'd never heard of before. Often these can be difficult for doctors to diagnose and the wait to find out what's wrong with the patient is extremely distressing. With hindsight several wondered if the severity of the illness could have been alleviated had they or health professionals taken the symptoms more seriously when they'd first appeared.
Doctors so rarely come across the illness her sister had that she was taken into a lecture so trainee doctors could learn more about it.
Doctors so rarely come across the illness her sister had that she was taken into a lecture so trainee doctors could learn more about it.
She had this first visit to the hospital and then got sent home overnight. And then the second day they did diagnose it and then she was straight into Neuro Intensive Care. But it was a bit, yes, it was very scary and frightening that she didn't get diagnosed quicker. Because I think if she had been diagnosed quicker, possibly they could have treated her with some of the sort of things they do like, I think it's plasma transfers and things, immuno-globulin treatment which would have actually prevented the onset of the sort of damage to her nervous system that happened. I mean I'm not saying that it, you know, I don't actually know for a fact that that could have been avoided. But I think if she'd been treated quicker then it might have helped.
So when she first had the symptoms she went into hospital, into A& E?
Yes, yes.
With anybody?
She went with a friend. And as I say she saw this young doctor, who I think was very, you know, obviously hadn't seen it before, didn't know what it was, thought it was a bladder infection and sent her home. Asked her friend to stay with her overnight. And I think actually after that happened, when she was diagnosed with it properly and after she'd been in Intensive Care for a while, she did actually go and talk to, they wheeled her down to a student lecture. And I think they did actually, she did actually have a visit from this doctor who'd been unable to diagnose her because obviously it was something that, you know, she had to learn in terms of her training. But it was just very difficult. Because I suppose you can't, you know, you're not going to necessarily be able to show someone an example of someone with Guillain-Barr' during their training because it's so rare. It's difficult to diagnose.
The problems requiring intensive care were often complex and bewildering to relatives and close friends. While longing for answers and explanations they often had to wait as the doctors worked to make sense of what was going on. Some were told in Accident and Emergency (Emergency Department), others were told sometime during the patient's ICU stay. One man said he only learnt that his father had a rare form of pneumonia when they went to an ICU follow-up appointment several months after his father was discharged. A few people said they'd never found out exactly what had gone wrong.
Accidents
Being told that a relative or close friend has had an accident can be extremely distressing because the news often comes completely out of the blue. There is no build up and no time to prepare mentally, emotionally or practically. Some people said they'd received a phone call telling them of the accident and that they needed to come to the hospital, but were given few other details. Getting to the hospital after hearing such news was also difficult for the one who had to drive, especially if it was a long journey. Not knowing what they'd find when they got there made the journey even more harrowing.
On the long journey to the hospital she just wanted her son to be alive, but didn't know how serious the accident had been or if she'd have to stay overnight.
On the long journey to the hospital she just wanted her son to be alive, but didn't know how serious the accident had been or if she'd have to stay overnight.
We eventually got hold of [the hospital] and they were waiting for him to arrive in the ambulance. At that stage we had no idea of the severity or anything. We didn't know whether to pack a bag and we didn't know whether we should all go and in the end did, we decided that because we didn't know anything about the situation, all of us would go in the car. We then just literally drove, not knowing at all what was going to be at the other end. And I know all the time all I kept thinking was, 'Just be alive, if you're alive when I get there, it's going to be okay.' And it sort of just kept me going and it's' you're all in a real numb state. I mean we all remember the journey very, very clearly. I mean how my husband drove I don't know. But you're just completely all in your own thoughts. We couldn't comfort the children. We didn't know what we were going to find.
We were getting nearer to the area of [hospital name] when my other son spotted the car on the other side of the road and at first glance I thought, 'Oh it's okay, it's not too bad.' Luckily we hadn't seen my son's side, because if we had I think that would've been absolutely dreadful.
We got to [the hospital] and it was very much like a scene from Casualty where you go in and you give your name and they say, 'Oh right, yes', and they take you into a side room. And again we still don't know if he's alive and it's, you then wait to see someone walk in and you look to see their expression. And luckily one of the first things they said was he is still alive. We straightaway we were given, I don't think she was a nurse, I think she's more of a' weren't they used to be called orderlies but it's in-between' so she was part of the nursing staff but I don't think she was a nurse. And she was more of our liaison with the nursing staff, which was really helpful because the worst thing is being in this room and you don't know what's happening. But you know that they're obviously doing something and they probably can't tell you, but you' it's the waiting. It seemed to go on forever.
But eventually they came and they said to us we could go and see him. He was still in accident and emergency. So my husband and I went in and there was a lot of blood on his hands. But the reassuring thing was that' A) he was alive and B) he looked like him.
One woman had been on holiday abroad when she received several messages on her phone to call home. After learning that her brother had a motorbike accident, she and her husband decided to cut their holiday short and return home. Another had been on maternity leave when she received a call from her partner telling her he'd been in a car accident. They both assumed it wasn't serious until he had a scan, which showed he had a ruptured liver. He ended up spending 3 ½ months in intensive care.
Her partner remembered everything about his accident when he woke up in ICU after emergency surgery, but was then re-sedated because of other complications.
Her partner remembered everything about his accident when he woke up in ICU after emergency surgery, but was then re-sedated because of other complications.
I was at home on maternity leave because I'd just had my baby, and [my partner] was at work. And it was 5 o'clock in the evening and he phoned my mobile. And he normally does to say, 'I'm on my way home' and he just said, 'Oh, I've crashed my car.' And I was, 'Okay. Where are you?' thinking he'd just driven in the back of somebody. So I started driving up to the A5 and there was all traffic stopped and there was police and ambulance and fire engines coming. So I thought, 'That must be for [my partner].' So I just pulled out and followed them up the road. And then I saw his car all on fire and up the grass and the police there. So once I got there they wouldn't let me see him. They were just treating him and they took him off to the hospital. So I thought he was okay because he'd phoned me. So then the police took me up to the hospital and he was in the Accident & Emergency having been X-rayed. And they thought he just had some broken lungs. So they were going to send him home that evening, until he was complaining of some pain. So they did, I think it's a CT scan, the all-body scan. And they found out he'd sort of split his liver and everything. So he had emergency surgery, and that's when he went straight into Intensive Care.
Straight after the surgery?
Straight after the surgery. It was like the middle of the night by the time he had surgery, and they took him straight up. And I was allowed to go and visit him, but he just looked like he was asleep because they'd sedated him. And then he was awake the next day and talking. He could remember his accident and everything. And then a couple of days later was when, because his car rolled, they described it like water in a bucket sort of going round and when he stopped everything banged together. So he started having lung injuries and things like that. And that's when sort of he got really, really poorly. So they sedated him. And he was on the sedation for three months. So from a couple of days of being awake he just sort of went to sleep for three months. And during that time all his body organs just stopped working, his lungs collapsed and things. And they just said it was all due to shock and where he'd rolled in his car. So it was all a bit of a shock really, because he was fine for two days. And then he woke up, I think it was about three and a half months.
One woman said a policeman had visited her at home to tell her that her son had had a motorbike accident. Another was told by her husband's friend that her husband had an accident on his mountain bike. Like many other people we interviewed, they didn't know how serious the accident had been until they got to the hospital. Most people had no previous experience of intensive care either, though one woman, who was a nurse, said she'd assumed her son would be admitted to ICU because of the injuries he'd had.
Witnessing an accident can also be distressing and traumatic. One woman described how her niece had witnessed her own father's accident and how difficult it had been for her uncle to comfort her when he himself was shocked and having to give information to paramedics. One man described how he reacted when he discovered his wife lying on the floor, struggling to breathe after she'd fallen through a hole in their bedroom floor at home.
When he saw his wife's accident he became hysterical and had to be calmed down by his son.
When he saw his wife's accident he became hysterical and had to be calmed down by his son.
Well my experience started back in December, on December the 13th 2003. We had warm air heating in the house and we decided to change it to radiators central heating, so a friend of mine who was Corgi registered and myself decided to change the central heating. Well to get to the radiators, the piping, we had to cut holes in the floor as they're not floorboards but big sheets. We cut the holes, done all the radiators upstairs except the one in our bedroom. I did the hole but I forgot to put it back in and I was so tired that evening. I'd gone for an hour's lay down. My wife came upstairs with a cup of tea to get me up, not knowing that there was a hole in our bedroom. Opened the door because it was in darkness and went straight through the hole, through the ceiling and ended up on the lounge floor.
The first thing I knew there was a big crash. Dashed out of bed and saw a big gapping hole in the floor. Looked through and saw my wife down on the lounge floor. I dashed downstairs not realising I hadn't got anything on so that gave my daughter another shock. She was here. She saw it all. Just to see what had happened. And my wife was lying on the floor covered in dust and grit and all sorts of bits and pieces. And actually lying on a piece of wood that she'd brought down with her. And saying that she was struggling to breathe.
I started to panic a bit which I shouldn't have done. My daughter went round to fetch our friend from the next cul-de-sac along. And she turned up. Then my son and my daughter's partner turned up followed closely by the ambulance because my daughter had already rung for an ambulance. By this time I was really getting hysterical and I shouldn't have been because I've, I was trained for that sort of thing. But when it's one of your own it's a totally different kettle of fish. My son took me out into the kitchen to calm me down. Apparently I heard, I found out afterwards that he slapped me across the face twice which I can't remember [laughs].
By the time I'd calmed down the ambulance crew had already assessed my wife and getting her on the stretcher to take her out. And I was able to go with her to the hospital. But those first few hours were a nightmare. They really were. A lot of it went by as a complete blur.
In Accident and Emergency (Emergency Department)
In the UK, people who have had an emergency illness or accident are usually first examined by medical staff in the Accident and Emergency/ Emergency Department (A&E/ ED) of the hospital. At this stage, if there has been an illness, relatives or close friends often know very little about why a person has become so ill so quickly, the effects the illness might have or that the illness could be life-threatening. If there has been an accident, relatives often don't know how serious it is or what injuries might have been sustained. The uncertainty of not knowing is extremely stressful and the patient's relatives or close friends have to wait for more information while the patient is being examined or treated.
How long relatives or close friends might have to wait for news about the ill or injured person varies. Medical staff need to examine the patient immediately and talking to relatives can delay vital work that could affect the patient's health. Many people found waiting for news extremely stressful and difficult because of the uncertainty involved. For a few people waiting for news felt 'like eternity' and they described this as the most traumatic time of the entire experience. Some said they waited five to ten hours in hospital before a doctor was able to tell them what was going on.
She and her husband were desperate for news of their son's illness, and waited anxiously at the hospital all day to learn that he had meningitis.
She and her husband were desperate for news of their son's illness, and waited anxiously at the hospital all day to learn that he had meningitis.
Mother' Because they [paramedics] were initially focused on a drug overdose, there is some concern that he might have been delayed going onto antibiotics. It wasn't until they did a lumbar puncture that they concluded that he had bacterial meningitis. In fact it wasn't confirmed that it was bacterial for about 24 hours.
Father' If not longer, actually.
Mother' He hadn't taken any drugs. He doesn't do drugs and we knew very well he didn't do drugs. He was 28 at the time and a very responsible mature person, very good attitude. Yes, he likes to have a drink, but he never did any sort of drugs as such. I worked in the A & E department of the local hospital and we received a lot of support. People were very communicative. And even so we felt that we sat outside and were desperate to know what was going on. All, every minute we, not knowing what the diagnosis was, not knowing anything that was happening. But we could hear him because he was growling and shouting in his fever. And we both nearly went mad. But they told us as much as they could, when they could. He was there about five hours I suppose before they decided to go across.
Father' I think we arrived at the hospital around about 3 in the afternoon. They finally did a CT scan, sort of 5 o'clockish. And it was after 6 before they concluded, they couldn't, there was no sign on the CT scan of the meningitis.
Mother' No, it seemed quite normal.
Father' So the lumbar puncture, I think we got the results around about 6.30 in the evening. Obviously it's quite devastating to be told that a relative has meningitis.
They at that point said they didn't have a bed in Intensive Care at the local hospital and that they were planning to transfer him to a nearby hospital, but that an anaesthetist would go with him and he would be looked after very carefully on that journey. Which was quite a difficult journey. It's through narrow'
Mother' It's over the hills and windy lanes. So we jumped in the car and followed the ambulance. In fact we got there ahead of it. Which is not unusual I think. And were shown to ITU.
Father' It was around about 9 o'clock at night that he was sort of settled in to a bed.
Mother' Yes, maybe even 10.
Father' 9.30-10 o'clock into a bed at that the second hospital. We stayed for a fairly short while.
Mother' And there was a very nice nurse that had been put in charge of him. I immediately felt confident that she was totally on the ball. She told us briefly the plan for the night and said we didn't need to stay, we ought to go home and get some rest because it had been a terribly traumatic day. And such was our confidence in her that we felt we could do that. And obviously they would call us. We gave them all our numbers and everything.
After being examined in Accident and Emergency (Emergency Department) some patients were admitted to ICU immediately. Others went to general wards or specialist units first but, when their health deteriorated still further, they were transferred to ICU. One man described the support he and his partner were given by an outreach nurse who visited them several times on the ward before his partner was actually transferred to ICU. Outreach services aim to enhance the care of potentially seriously ill patients on the wards and make the transition to or from ICU easier. Outreach nurses also aim to reduce the risk of re-admission to ICU from the wards and to share their specialised nursing skills with other staff in the hospital.
Some hospitals don't have ICUs or there may be no vacant beds at the time, and some hospitals don't have the specialist services on site, e.g. Neurosurgery, so that patients may have to be transferred to other hospitals. When these hospitals are some distance away from relatives' homes, this can be an added pressure (see 'Suspending normal routines' visiting ICU every day'.)
He followed the ambulance which took his wife to another hospital, and the journey felt like the longest he'd ever made.
He followed the ambulance which took his wife to another hospital, and the journey felt like the longest he'd ever made.
The nursing staff there, especially the staff nurse on duty in A&E she was tremendous because they couldn't decide whether she was, my wife was to be admitted onto a surgical or a medical ward at the time. And this staff nurse was getting [laughs] quite agitated about it. In the end she made them choose. So by the early hours of Sunday morning my wife went onto a surgical ward. From there, Sunday right through 'til the early hours of Tuesday morning, her health deteriorated, especially her breathing. It was getting more and more laboured. So the doctors decided they wanted to, they had to intubate her on the Tuesday morning because if they hadn't she was getting very tired and weak. But then she had, we had to find her an ICU bed for her. And there wasn't one in [our town]. And they decided to send her to [place name] which was [ugggg] to us [laughs]. But then one came available in [place name] which is a bit nearer but easier to get at than [place name]. So she was put in an ambulance and sent to [place name]. We followed behind in our cars because I couldn't get in the ambulance because her anaesthetist and the nurse had to travel with her. And that was the longest journey I've ever had in my life. It really was. Seeing her go off in ambulance with blue lights and sirens going. Well, we tried to keep up with the ambulance but we couldn't. We got as far as the outskirts of [our town] and then well we had to let it go.
ICU admissions from within the hospital
Some people are already patients in a hospital ward but are admitted to ICU because their health has deteriorated so much that they now need 24-hour nursing care. A few of these patients may have picked up infections whilst in the hospital itself. One man's father was in a general ward at the time of interview. He explained that his father had been admitted to hospital for bowel problems but had developed pneumonia on the ward. He was admitted to ICU for three days and then transferred back to a ward when he started improving again. Other patients go to ICU because of complications during or after surgery. Occasionally patients who have been in ICU may have to be readmitted to intensive care after being on a ward because their health has deteriorated again.
His father went to hospital with stomach pains but when he developed pneumonia he was transferred to ICU.
His father went to hospital with stomach pains but when he developed pneumonia he was transferred to ICU.
Well, it started, I mean he's had a history of stomach problems before. So he got some stomach pains and so we referred him to the doctor. And he referred us to the hospital. And then they had to operate on him because his bowels were blocked. So they did that. And because he had an operation before on the bowels, he's like had all this stuff inside his stomach. So they took, it was quite a big operation, it was about five hours, it was a five-hour operation. And from that he was struggling to breathe properly after the operation. So he got a bit of pneumonia on his lungs and stuff. So that's why he went into ICU. So just to make him breathe a bit better and hopefully to get rid of the pneumonia there as well.
So he went there literally probably a couple of days, maybe three days after the operation. And then they took him down, I think we got a phone call about 11 o'clock at night saying they were going to take him down [to ICU]. And so we just went down there. And they took him. He wasn't very alert, he was quite unconscious at that time. But after, I think they put him on some really heavy oxygen stuff, and after a while, I think even overnight or maybe later on that day, he was looking a bit better.
Last reviewed August 2018.
Last updated May 2015.
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