Intensive care: experiences of family & friends
Because critical illness is often a sudden, unexpected emergency, it can change the lives of both the patient and those they are close to in a matter of minutes. The everyday lives of family and close friends may come to an abrupt halt or be turned upside down as they live in the uncertainty of not knowing whether the patient will survive. The ICU, an unfamiliar, alien environment, often becomes the centre of peoples' lives as they wait desperately for any signs of change or progress.
In the early stages of care it is often not possible for doctors to give a precise idea of the patient's prognosis but this usually becomes clearer as time goes by and the progress of the patient can be assessed. Here people talk about the uncertainty they'd experienced when a relative, partner or close friend had been critically ill in intensive care.
For most people finding out that the patient's illness or injuries were life-threatening had been extremely shocking because they hadn't known whether the patient would survive or be permanently disabled, brain damaged or paralysed if they did. Waiting for information, updates or signs of improvement had been distressing, one woman described the experience as 'worse than a nuclear explosion' (see 'Emotional impact on relatives and friends in ICU'). Completely out of the blue, peoples' lives had been thrown into chaos and, at least in the early stages, no one had been able to answer their questions. They'd looked for assurances from doctors but, at that stage, even the doctors hadn't been able to reassure them.
At the time she desperately wanted to know if her mother would survive but doctors couldn't tell...
It is very hard because you want the doctors to give you a sign that things are getting better and looking back I can see why they don't. At the time that was very difficult. I wanted to know 'yes she is going to live' or 'no she is not'. And I can see now why obviously they can't give you that answer because anything else could go wrong and it is just, just really trying to accept that. They don't know really. They are just working their hardest to make things all right but other things can still go wrong any way. And to take each day as it comes. And it is going to be a roller coaster. There are going to be good days and there are going to be bad days, but just because you take a step back doesn't meant that the end result is going to be a bad result. You may get there eventually. But really you have to take each day and if it is a good day, great. If it is a bad day, don't dwell on the bad day so much. Don't feel that is a real set back because it may not be at all.
Many people said they'd felt completely helpless during this difficult time and had lived from one day to the next, focusing only on the moment in hand. Normal daily concerns had paled into insignificance, and waiting for information about the patient's survival and quality of life after ICU had become all that mattered.
In the early stages no one could give her information or hope on whether her son would be brain...
I think the doctors were very hesitant. They were very honest. They were very clear about what they were reading on the CT scans. They were liaising with the City hospital. I believe there was an expert there who was advising them on how they should be coping with our son, that was my understanding of what was happening. And that they were constantly talking to the City hospital, sharing the expertise.
And they obviously could not be drawn and we wouldn't have wanted them to be on how he was going to come out of this, it was far too soon. So we had no idea, incredibly stressful really.
And you mentioned that, at the time, were you just dealing with what was in front of you?
Yes, very much so. And when he was there, the fact that he was there, and not knowing whether he would come off the ventilator, we didn't even think about it. But you know, when it happens then you face it. And when his tracheostomy came out, would he speak again?
Some people felt they'd been asked to give consent for vital surgery that might have helped the ill person survive. At the time of the interviews relatives couldn't give consent but could express that they didn't object (assent) to a procedure being performed, unless they'd had power of attorney. Treatment decisions have to be based on medical evidence and taken in the best interest of the patient. Some people said doctors had told them that, because the patient had been so ill and weak, even the life-saving surgery, their only hope, would be a huge risk during which the patient could die. Having to deal with the extreme stress of this situation had thrown many into turmoil. Waiting to find out whether the patient had survived surgery had been the most difficult part of some peoples' experience, a time that had often felt like days, whether the patient had emergency or planned surgery (see 'Planned admissions').
Her husband's leg amputation was his only hope for survival but he might still have died during...
Both my sons do not live locally, one lives abroad and one lives north, and I made the decision but obviously phoned my sons at the same time and the hospital said they would leave it as long as possible in the hope that my sons would both get there in time. Which they did and obviously I told them the situation on the telephone and they said there was only the one decision. You've got to go for the operation to give him a chance to live, which he did. And on the 14th February he went down to theatre and they amputated his leg. It was a long operation because apparently there were complications during the operation and I think probably that time was the worst time, waiting, because you were thinking is he going to come through, is he not going to come through.
How long was this waiting? How long was the operation?
During the operation we decided we would go for a walk and we could have stayed in the relatives' room but they told us it would be two to three hours minimum and we decided to go for a walk, my two sons and I. We went out to get some air and we had a coffee and walked about and then we phoned the hospital to see if the operation was finished and they said no it was taking longer than anticipated, but we decided to then go back to the hospital and we went back and waited in the relatives' room until they said that we could see my husband.
Obviously after the operation he looked awful because he was on a ventilator, sedated and tubes and everything else everywhere so it is quite distressing at the time, but we were all thankful that he had come through the operation. And the doctors said he has come this far, you know, he is obviously a fighter. So it was a - it was a big relief, but I think we were all full of apprehension as to what the next two days would bring because they had said the next forty eight hours would be critical.
She was devastated when her mother had to have further surgery because she could have died during...
Went back into the ICU to see Mum and a consultant wanted to speak to me and he took me into the office there. He explained that they thought that the enzymes from her pancreas had leaked into the cavity in her stomach and that they were destroying her stomach lining. They couldn't get to the affected area last week to operate but they were now going to try and remove the affected tissue. And if they couldn't remove it, then Mum would die. It would kill her. Then they asked me for consent for tracheotomy which they explained, this was a high risk procedure, that she could actually die from doing this procedure. But because I had seen how uncomfortable she was with the oxygen tube going down her throat, I knew that I had to take that risk, it was to make my Mum more comfortable. You know, even if it was a risk of losing her. So I gave permission. And that was really difficult knowing that you are giving permission for something that could effectively kill her really. When I got home I was really, really upset and phoned my husband and he came home from work.
This man, whose wife had emergency surgery to remove a kidney, recalls her signing a form before the operation.
He was shocked when told his wife could die if she didn't have surgery and that, even after...
What were the consent forms for?
Husband' To have the operation.
Right, so you didn't sign them?
Husband' Wife wouldn't let me sign it. The wife wouldn't let me sign it. She wanted to sign it in case anything happened. Because he was honest, he was very, he said, 'I don't want' he said, 'I can't give you a percentage.' He said, 'Your wife is very ill.'
Wife' He didn't tell me that, did he?
Husband' No, he told me. He said, 'If we don't operate now' he said, 'You won't have a wife by the morning.' And they operated. They took her up to Intensive Care. I stayed there. I don't know, I don't know what time, I can't remember much about it to be honest with you.
Early hours, I went back up there [ICU]. They operated on the Thursday, didn't they? You [wife] went in on the Tuesday, didn't you? They operated Thursday night, yes. The time you come back from theatre, out of the theatre, early hours Friday morning. I came home. I went back up Friday and the wife was out of it completely. All the machines, tubes, it was frightening. Couldn't believe it, you know what I mean. Everything was breathing for her, everything. They told me then that they still didn't have a very good, you know, the percentage wasn't very good. She was still ill. It could still go either way. So you can imagine how I was, oh, I didn't know which way to turn. I was devastated, you know what I mean. And it carried on, I don't know how long for. How long? I don't know, I don't remember.
This woman explained that, without surgery, her best friend would have died but, on three different occasions, her friend had actually been too weak to have the operation she'd so desperately needed.
After saying her goodbyes to her friend, all she could do was wait until after the operation for...
By this point she'd deteriorated so much that they'd got her on a different ventilator, an oscillating ventilator. And it was bouncing her around the bed, not that there was much room in the bed for her to bounce around in because she'd swollen up that much she filled the bed. They said that they couldn't take her to theatre that she was at too high a risk to actually move. So they decided that they were going to bring the theatre to the Intensive Care Unit, which they did. They brought the operating table, the lights, the monitors, the machines, everything. And they cleaned a side room out, sterilised it all and took her in there.
Three different times they gave us that they were going to start operating. The first time passed by. She wasn't stable enough to come off the oscillating ventilator. The second time came and passed by. She still wasn't stable enough. And then they decided that they didn't think she was going to get any more stable than what she was so they were going to do it because if they didn't she was going to die. So we all went in said our good lucks and said our good byes [pause].
We were just playing a waiting game after that. Just waiting for the doctors to come out. Everybody that was close to her was just there [pause].
And we just all sat in there. There was two waiting rooms, two sitting rooms both with only like three or four seats in each one. And there must have been about twelve of us [sigh] just waiting for the doctor to come out. Every time the door opened, there were some other family in there as well who had somebody in the intensive care and it was just horrible. It was just, nobody wanted to talk.
One man, who'd worked in the health field, had asked doctors if his wife could take part in a clinical trial involving a new drug in the hope it might help her recover. Another said his critically ill wife had been given a new drug that had previously only been given to three other patients in that hospital.
Some people said that, because the patient had brain or head injuries, it had been impossible for doctors to give them any definite information about the ill person's survival or mental health for quite some time.
Doctors couldn't say for sure whether her brother would ever be himself again, and she was told...
But yeah as to the recovery, they don't know because you don't know and until he would start to talk to you or even would he see again, we didn't know anything at that point. So as a family that was really the worst thing to deal with. We had to wait. We sat every day and watched the monitors and the nurses would tell you exactly what they were doing, 'The heart rate's low today because we've done that on purpose to drop the blood pressure. We need to keep the blood pressure low to keep the swelling in the brain down.' The swelling in the brain got so intense at one point there was nowhere else for it to go and at that point they did talk about operating and opening the skull, oh God to allow the brain to swell. But we were told that if they did that the chances of recovery would be very poor because, that's not good the left side of the brain for that to happen. So we really didn't want to do that and agreed that the best course was to keep him under for another week, flushing him with this drug that we were told as well is a poison, is not good but at that point of the game it was probably the best course of action rather than operating and risking a low recovery rate. So we just had to sit it out and wait another week for him to go down and have a scan.
I spoke once to a lady in the hospital, I can't remember her name now, just to find out how people recover, what did she think his chances of recovery were, to try and get a second opinion I suppose. But with head injuries they don't know, they just don't know. It could go either way. She did say, 'I've seen people with less visual impact than your brother and they've never recovered. I've seen people worse that have made a full recovery. There is no rule of thumb, it just depends what damage was done? Was it permanent? We don't know and you won't know until eighteen months from the date of the accident, at eighteen months that'll be as good as it gets.'
Two couples, both of whom had sons with brain injuries, had been disappointed in the attitudes of some doctors. One couple felt they'd been asked by a doctor to decide whether they'd wanted their son's life support machine switched off because he'd been left in a persistent vegetative state (PVS). This is a condition in which the patient is severely brain damaged and usually considered to be unconscious and permanently unaware. Treatment decisions have to be based on medical evidence and taken in the best interest of the patient (for more information see our site on 'Family experiences of Vegetative and minimally conscious states').
Another couple felt they'd been told their son would be brain damaged and they shouldn't raise their hopes about progress (see 'Receiving information and news from doctors'). Both of these couples had been disappointed when doctors had dismissed their claims that their sons had shown signs of awareness, and both had felt that it had been too early to predict how they'd recover after a brain injury. In both of these cases, the critically ill person had recovered and is now living a healthy and full life.
They were devastated about the possibility that their son's life support machine could be...
So a doctor and a nurse took us aside and told us to prepare ourselves, and in a roundabout way asked us if we wanted to turn off the life support. And this was a desperate shock. Because no way had we been prepared for the idea that he would not survive. And the longer he survived, the more likely it seemed that he would. And we came home kind of on autopilot.
Father' Yes, we had to drive about 12 miles from that hospital to our house. And it was in some kind of odd state. I can't tell you how I got home.
Mother' We were just driving slower and slower, just kind of'
Father' But they told us to go home and consider our options. But they didn't explain to us what our options were. And because my wife has worked in the medical area for quite some time, we could conclude what our options were.
Mother' Which was do not resuscitate and organ donation, those were the only things I could think of. So I called one of my colleagues, who's actually a bereavement counsellor. And she came immediately and was very supportive through'
Father' It's okay.
Father' It was a very black time.
Shall we take a break?
Father' I think, no, it might be better if we can carry on.
Mother' Yes. While she was here, the consultant rang and said, 'No, forget all that. Don't worry about that for the moment. What we're going to do, we've got a plan. We're going to put him back to sleep for maybe a couple of weeks and then wake him again and see how he's doing'. And she immediately said, 'You know, if they've got a plan, it's not as bad as you might have been led to believe. They wouldn't have a plan if it was that bad. They'd just let it go'.
Father' The key thing was that they didn't know. They didn't know what the outcome would be. They'd sent a photograph to a local centre of excellence, who'd gone, 'Oh, it's desperate'. But they, this particular consultant obviously thought, 'Well, we don't know that that's the case'.
Father' 'We're not going to give up on this lad yet' was his words when we saw him the next day.
Nobody could say, 'This would happen.' What
As a nurse and mother she refused to believe doctors who were telling her that her son would be...
And I think they were... the staff were fantastically supportive. But there were two doctors, there was a young doctor on night duty in the early days, and I was sitting by his bed and all of a sudden she came out of the nursing station and she said to me, I have to tell you I'm a senior doctor. I've had a lot experience and your son is very severely brain injured, and you need to take this on board. Basically, those were her words. And I can remember saying to her, 'Yes, I know, I know he's badly hurt but it's too soon', because she was making the step of trying to encourage me to accept that this had happened. And I don't remember whether she was trying to' I don't know what she was trying to do really. I hadn't asked for the information and she kept trying to put over her point and my reply was always, 'Yes, I understand exactly what you're saying but it's too soon'. Obviously I did because I'm a registered nurse.
But it was too soon. And she kept telling me and I just kept saying it's too soon.
I think that it's inappropriate for people to try and assume that they know how people are going to come out of something like a head injury because what you've got is an individual and they will come out in their own individual way when they're ready for it. And you can't' I don't think enough is known about head injuries. I know my son was severely injured by the accident but I honestly don't believe that enough is known for people to be able to stretch their professionalism to the point where they need to share their long term predictions' I mean it's too soon, you can't share that kind of news in an intensive care situation. Time itself heals an enormous amount. And at the same time allows you to take on board what's happened. You can't present people with that kind of information at that time, and' those were the only two doctors who did that. There were many other doctors, none of whom attempted to do that.
They would, as much as they would say we don't know what's going to happen here. Yes he is severely injured, you know, we can see that. We can see what we're looking at. We do not know how he's going to come out of this. And that's absolutely fine. That's acceptable, we don't want predictions. It's too soon.
Thoughts about the future had worried people too. Many worried about losing a person they'd loved and living life without them. Others had been anxious about the possibility of caring for someone who'd been left brain damaged, paralysed or disabled. Other were concerned about how the patient would have coped living alone with disability.
He worried about losing his wife and coping without her because he relied on her so much.
And you were worried for the future then as well?
Oh, yes, I suppose I was, yes. You know, I thought, 'Blimey where do I go now? Now what do I do?'
Many people described how the patient's condition had improved and then deteriorated again, often more than once, and how anxious they'd felt visiting ICU, never knowing from one day to the next what they'd find. They described this time as 'a roller coaster' and said they'd experienced extremes of high and low, joy and despair, often within a few hours or days.
She wanted her husband to be able to breath by himself but it was difficult to focus only on this...
What were your thoughts and feelings right from the beginning, in the middle and to the point where then he was well enough to be moved? What were your main concerns?
Just to get him right again and all I wanted, all I kept wanting him to do was come off the oxygen so that, because I was trying to work towards getting him to [another hospital] because I knew that they couldn't fix him completely, if you know what I mean. Not that he was broke but I knew that he had to go to [another hospital] to get this thing clamped or whatever, the blood vessel in his head clamped. Because until he'd had that done he was never going to be better. It could have bled again and I knew he wasn't safe until he got there and had that done.
So all I kept thinking was to the next stage. Let's get him off the oxygen. Let's get him off the C-PAP. Let's get him breathing on his own. Let's get him to [the other hospital]. Let's get him fixed but that's all. But like I say every time we got somewhere something would happen. He'd have to go back or he'd have to go back on the oxygen to give him a rest overnight because he was tired and because. And then they had to give him two, I think that it was a lot of blood. Not one, two lots of blood because obviously they were taking the blood samples off him to see the state of his chest. And because they were only taking small amounts every hour but all the small amounts were adding up. So when they gave him a blood transfusion he perked up for a couple of days and that was better.
But I just kept hoping for the next stage really and thinking, right we've got through that. Now let's get. And I'd say to the nurses, 'So once he's on that C-PAP how long does it?' And I'd ask them questions. 'How long does he have to stay on that for? What do his oxygen levels have to be before we can take him off that?' And I'd ask them what, you know, when they were taking the blood samples if that's good. 'Can he come off that now? Can he go on C-PAP?' And I'd stand at the end and they'd explain things to me and show me stuff.
Some had believed the patient had been improving only to learn hours later that, again, the ill person had deteriorated and could die. This had come as a shock because they'd assumed the worst had been over (see 'Receiving information and news from doctors').
A few days into her son's ICU stay, doctors found out that he'd ruptured his spleen and she was...
And then my husband got a phone call and they said, 'We think you'd better come back, we're going to have to operate on him.' And they'd actually, the paleness that I'd mentioned earlier, turned out to be that he'd had a ruptured spleen and he was losing a heck of a lot of blood. So before they could possibly do this bolting, they had to operate and remove the spleen and part of his liver. So we were back into a real life or death situation again, not that I think we particularly left it but that made it even worse. And we had to go back in and sign forms and sort of well just generally be informed.
Some said the patient had improved and deteriorated so often they hadn't known what to tell others. Those who'd emailed or written to the ill person's friends, thinking that the patient had very little time to live, felt uncomfortable about having done so because the patient had improved the following day.
Her sister-in-law got better and worse so many times she felt embarrassed giving updates to...
So there was a time when you thought things would improve, but then they deteriorated?
Yes, yes. I mean several times. So that my emails were almost embarrassing. Because there would be one when I was saying, 'Things really do look as though it's getting a bit better' and then suddenly it was worse again. And then I think I felt even more embarrassed having said, 'Look, no, this is really, it's a write-off' and then they got, it got better again afterwards. But I think people were very understanding. At least they didn't blame me for doing that.
For some people, there was a lot of uncertainty not only about the patient's survival but about the condition as well. Some hadn't known what was wrong with the patient and waited days or weeks to find out. One man hadn't known that his father had a rare form of pneumonia until they'd attended an ICU follow-up clinic several weeks after his father's discharge from hospital.
He wanted to know why his father had got so ill so quickly, and tried to reassure his mother...
And I think I posed a question, 'What are you giving him?' and he quite amusingly said, 'Think of Domestos as an antibiotic, we are giving him really strong stuff so that it would kill anything' sort of thing, you know. So I thought that, although humorous at the time, it filled us with a deal of hope.
My Mum was clearly distressed and I don't think she, for a while my Mum was in a bit of denial, you know. She was just looking all the time for positive signs. My Mum is 79, she was 79 yesterday actually, and that is understandable. They have been married for over 50 years. It was really tough for my Mum. She wanted to see positives and everything was going wrong. She in fact clung to those little things, if they said something, they were going trying to try something, 'Oh that is good isn't it.' Yes, that is good but you know it may take a little bit longer than that, he is not out of it yet.' So I was encouraging her and emphasising what they were saying and trying to give her comfort, but at the same time obviously they were preparing her you know'
A few people described how they'd feared the worst when they'd visited ICU and had found the patient no longer there in their bed. One man said he'd been relieved to learn that his critically ill wife had been moved to a private room but disappointed to hear she'd got MRSA. This is a bacterial infection that mainly occurs in people who are already ill in hospital and can be difficult to treat. Many said that, during this uncertain, distressing time, they'd looked desperately for signs of improvement and hope (see 'At the bedside: signs of improvement and progress').
Last reviewed August 2018.
Last updated May 2015.