Uncertainty

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…

Age at interview 37

Gender Female

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Eventually somebody came along and explained she was very, very poorly. They thought she had pancreatitis and that it really was touch and go. And my first questions was, Is she going to die? I needed to come back and talk to my children and they couldnt promise me yes or no. Couldnt answer me. It was going to be a roller coaster ride, she is going to get worse, then she will get better and then she will get worse again and just really the next twenty four hours were crucial.

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 cant 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 doesnt 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.

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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…

Age at interview 58

Gender Female

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They didn’t know what the outcome would be. We had no idea at the beginning, whether he would come off the ventilator, whether, what the outcome would be. And actually at that point, we weren’t even thinking about outcomes. We were simply, we shutdown to the point where we were thinking of exactly what was happening right in front of us, that seemed to be the best way to cope. And so that’s what we all did automatically, it’s not something we discussed.

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?

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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…

Age at interview 63

Gender Female

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The chest infection unfortunately became really bad, and he was taken to Intensive Care. I think that was about the 10th February and in Intensive Care obviously he was monitored very closely and they kept an eye on the foot, but because he had had such a severe heart attack they were concerned about another operation and the doctors kept me informed as to progress, but the toxins in the gangrene started travelling and I was told that my husband would die if he didn’t have the operation or he could die during the operation. They were no guarantees and obviously the choice was mine.

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.

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She was devastated when her mother had to have further surgery because she could have died during…

Age at interview 37

Gender Female

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When I got there [ICU] I was called into the relatives room by a doctor who explained pancreatitis to me in detail. And she told me that Mum was very, very ill and there was still a very high chance that she was going to die. Which really was a shock because I had seen her getting, what I thought better, and then to suddenly be told that again.

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 couldnt get to the affected area last week to operate but they were now going to try and remove the affected tissue. And if they couldnt 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.

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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…

Age at interview 59

Gender Male

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HusbandAnd the wife wouldnt let me sign the consent form, would you? She wouldnt put it on my shoulders. She said, Ill sign it myself.

What were the consent forms for?

HusbandTo have the operation.

Right, so you didnt sign them?

HusbandWife wouldnt let me sign it. The wife wouldnt let me sign it. She wanted to sign it in case anything happened. Because he was honest, he was very, he said, I dont want he said, I cant give you a percentage. He said, Your wife is very ill.

WifeHe didnt tell me that, did he?

HusbandNo, he told me. He said, If we dont operate now he said, You wont have a wife by the morning. And they operated. They took her up to Intensive Care. I stayed there. I dont know, I dont know what time, I cant remember much about it to be honest with you.

Early hours, I went back up there [ICU]. They operated on the Thursday, didnt they? You [wife] went in on the Tuesday, didnt 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. Couldnt believe it, you know what I mean. Everything was breathing for her, everything. They told me then that they still didnt have a very good, you know, the percentage wasnt very good. She was still ill. It could still go either way. So you can imagine how I was, oh, I didnt know which way to turn. I was devastated, you know what I mean. And it carried on, I dont know how long for. How long? I dont know, I dont remember.

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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…

Age at interview 37

Gender Female

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Then one morning, again, early morning we got a phone call from the hospital followed by a phone call from her boyfriend followed by a phone call from her dad to say that shed had a turn for the worse in the night. That she was having problems breathing again and that everything seemed to be going wrong. Her kidneys werent working properly, her liver wasnt working properly. Nothing was working properly, she was needing. By the time we got to the hospital it was obvious that there was problems with her blood pressure. She herself, lying in the bed, had just totally changed. Shed gone from being reasonably slim to being blown up. She was full of fluid. She wasnt passing urine and the doctors were really quite concerned. They came to us at one point during that day and said, you know, She could possibly die. Shes got like a less than 50% chance of surviving whatever is going on and we need to find out whats going on. And the only way that they could find out what was going on was to open her up again and see what was going on inside.

By this point shed deteriorated so much that theyd 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 shed swollen up that much she filled the bed. They said that they couldnt 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 wasnt stable enough to come off the oscillating ventilator. The second time came and passed by. She still wasnt stable enough. And then they decided that they didnt think she was going to get any more stable than what she was so they were going to do it because if they didnt 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.

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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…

Age at interview 52

Gender Female

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We took great comfort in the fact that the Neurosurgeon that was dealing with him, we were told was one of the best in the country and he did come to the bed very regularly, which was really good in the early stages because at least we could ask him, ‘What’s his chances of recovery? What impact will this high pressure have on the brain?’ The fact that it’s all the left side is the think tank and in [my brother’s] case it wasn’t just one bump. Hed got three lots of bruising on the left side which we were told would affect his speech, would affect his language, possibly his movement because the left side, it really is the side that controls everything. If it was the right side you wouldn’t have been so worried but the fact that it was the left side and it’s three lots of bruising might affect his memory, oh dear it was really awful.

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 rates low today because weve 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.

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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…

Age at interview 51

Gender Male

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Mother’They kept him [son] sedated for about five days and then decided to bring him round again and do another CT scan. He was still fairly agitated, and the CT scan showed multiple infarcts across the entire surface of his brain. Now this was about eight days in to the attack, to a point where I thought in my ignorance that he had survived and therefore he would survive. I thought he was desperately ill, but I thought he was safe. When they had the second CT scan, actually the third, because they took one in the first hospital, but the second one at that ITU, they sent it to the regional centre for an opinion. And the opinion was that he could not survive. But if by chance he did, he would be in a persistent vegetative state.

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.

Mother’Sorry.

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 were going to do, weve got a plan. Were going to put him back to sleep for maybe a couple of weeks and then wake him again and see how hes 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.

Mother’Yes.

Father”Were 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

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As a nurse and mother she refused to believe doctors who were telling her that her son would be…

Age at interview 58

Gender Female

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We noticed very early on that he was responding, he was appropriately responding with a squeeze of a hand or an expression on his face. The staff at first, were disinclined to believe that this was happening. They were very kind but they also were looking at the results of the CT scans that they could see, they were interpreting what they were seeing. And from the results of the CT scan, they weren’t sure that we could possibly be seeing what we were seeing. If you love somebody and you know them very well, you can often pick up things that other people who don’t know them wouldn’t be aware off. And there might be a flicker of amusement on my son’s face or he might you know, frown or’ and it would be entirely appropriate to the situation that’s going on around him.

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 hes 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 were looking at. We do not know how hes going to come out of this. And that’s absolutely fine. That’s acceptable, we don’t want predictions. It’s too soon.

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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.

Age at interview 59

Gender Male

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It was hard. Like my wife said, weve been married so many years, you know what I mean, and weve been together, you know what I mean. When youve been that close to somebody, Im probably not the only one, you know what I mean, but when you really love somebody, you think, God, how am I going to get through this, if anything happens? you know what I mean. And like I say it was more harder for me because all the years weve been married Ive never looked after any of the finance, you know what I mean. When I got married I was, I dont know, not Jack the Lad, but if I had a pound in me pocket Id spend it. And Im still the same now, you know. So I think to myself, Christ, if anything happened to the wife, how the hell would I go on? You know, Ive never run the house, you know what I mean. She, just I get paid and I say, Right, theres the money and she does it all, pays the mortgage, pays all the bills. I have nothing to do with it, you know.

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?

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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…

Age at interview 49

Gender Female

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And he was in hospital in ICU for five and a half weeks?

Yeah.

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 couldnt 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 hed had that done he was never going to be better. It could have bled again and I knew he wasnt 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. Hed have to go back or hed 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 weve got through that. Now let’s get. And Id say to the nurses, ‘so once hes on that C-PAP how long does it? And Id 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 Id 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 Id stand at the end and theyd explain things to me and show me stuff.

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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 hed ruptured his spleen and she was…

Age at interview 49

Gender Female

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At one point, wed been in to see him in intensive care, and wired up to monitors and everything, and they said to us, what they needed to do was to actually put a bolt in, which is to measure the pressure because his head had sustained a huge injury. They needed to monitor this pressure and adjust all his other body levels accordingly to actually reduce the pressure. And so they were going to take him to do that and they said, ‘It’s going to be a while, so if you want to go off or go and have something to eat or whatever’, and we found ourselves on a Sunday afternoon wandering around Staples, the stationery place. And just in a total daze, but it was a very routine thing to do in one respect, it was very normal it was normality amongst the total chaos.

And then my husband got a phone call and they said, ‘We think you’d better come back, were going to have to operate on him. And they’d actually, the paleness that I’d mentioned earlier, turned out to be that hed 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.

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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…

Age at interview 70

Gender Female

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There were days when my message to people would say, ‘It looks absolutely desperate. And then I’d feel rather embarrassed because the next day shed be a bit better. And partly it was all about how difficult it was to keep her blood pressure up and how much of the drugs she needed and different drugs. Then later on there were infections. I think, I got the impression that everybody in ITU developed an infection at some point or other. And she did have MRSA in her pelvis, or in her perineum. And she had other things in her lungs, she had a bit of pneumonia. But these weren’t very, very serious, although she did have to be transferred to an isolation room. And then she became very, very jaundiced and nobody quite knew why she was jaundiced. Whether something was blocking or whether it was an allergy to the drugs or whether it was haemolysis, whether it was to do with breaking down such a lot of blood, having bled into places and the blood having to be absorbed. And she got yellower and yellower.

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.

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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…

Age at interview 52

Gender Male

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Information wise it was okay, but there were still questions that we needed answering, ‘Why had it happened so quick?’ And in the early days they didn’t know what they were checking for. I remember the anaesthetist saying, ‘We are checking for meningitis, we are checking for legionella, we are checking for pneumonia, we are checking for a stroke. We just don’t know what it is.

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’

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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’).