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Experiences of Covid-19 and Intensive Care

Uncertain Survival

The Intensive Care Unit (ICU) is a place of uncertainty, where life-saving treatment is provided to those who are critically ill. The lives of ICU patients, and those close to them, can change dramatically in an instant. While ICUs are the sites of great successes of modern-day medicine; they can also be places of significant loss.

On this page, you can read personal accounts of:

  • Becoming aware of their critical situation
  • Conversations about ‘ceilings of treatment’
  • Emotions after witnessing other patients’ deaths

Please be aware that what people share on this page may be upsetting to hear and read.

Becoming aware of the critical nature of the situation

Family and friends are faced with great uncertainty when they have a loved one in intensive care (see also ‘Family and Friends’ ICU experiences/Uncertainty’). The COVID-19 (Covid) pandemic amplified some aspects of these experiences. The visiting restrictions kept loved ones physically separated, unable to be at their relative’s side, unless they were hospital staff or invited to the ICU for end-of-life visits.

For patients ICU was a frightening and isolated environment. Emma said: “ICU felt very intense, very intense, and the ward felt really… let’s breathe… I felt like I could breathe better. …Where in ICU I felt really like ‘anxiousy’, …as soon as I got into that ward… I just felt really scared and very lonely. But I just felt like I could be scared, whereas up in ICU I was too scared to be scared, whereas I could be scared down there, and I could sit there and cry.”

 

George was afraid that something would happen to the machines his life depended on.

George was afraid that something would happen to the machines his life depended on.

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How do you look back on that time?

Number one, the electricity shouldn’t go off, because if the electricity goes off, that was one of my fears.

Oh, was it?

Yes, that the electricity shouldn’t go off. Number two, the oxygen banks shouldn’t empty out.

Yes, can you say more about that? So were you very afraid when in intensive care?

Of course! Of course. It was between life and death. Can you just imagine somebody changing the figures and pressing the button and makes a mistake? Then you hear all the alarms going off, before probably they will call for an expert or somebody who knows what they’re doing and come and change the figures again. Yes, of course. And once everything starts going off, the alarms are so sensitive, once it starts going off, you see yourself go.

Yes.

Because number one, I didn’t want…I didn’t experience a nurse or anybody to come near the machines. Two, praying that the electricity doesn’t go off. Three, the oxygen keeps running. Yes…

Yes, I can imagine with all the machines around you, and…

You’re just lying down there with everything around you like a ticking bomb not to go off.

When family members were unable to be in hospital, updates from doctors and nurses were delivered by phone (see also ‘Staying in touch during the visitor ban’, ‘Communication between clinical staff and family members’ and 'A Doctor Speaks'). This was a clear change from standard ICU practice, when clinicians would always try to speak to family members face-to-face which would allow a relationship and a sense of trust to be established.

When family members are allowed into the ICU, they can support by the bedside and hear updates directly from staff. During the COVID-19 visitor ban, all of this fell away. Unable to see signs of changes themselves, some family members described how they paid particular attention to what clinicians did and did not say on the phone, picking up on signs of progress or their absence.

 

Paula noticed that doctors never said that Victor was “stable”. At the same time, he was not ‘unwell enough’ to warrant an end-of-life visit.

Paula noticed that doctors never said that Victor was “stable”. At the same time, he was not ‘unwell enough’ to warrant an end-of-life visit.

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And did you feel you were ever part of any decisions? Were there any decisions you had to make?

No. On that Friday night when we, both me and my son, spoke to the doctors and I said to them, well you’re telling us that it’s, you know, that he may only have the next 12, 24 hours. And they never, ever said that he was ever stable, it was that he never deteriorated. He’d stopped deteriorating. That was the words that they used. And then I said to the doctor, I said is there any way, I said, that we can come...get to see him? And they said no, not unless it’s end of life.

So that was...I didn’t get to make decisions. And like with the trache, they never asked me, they told me that’s what they had to do. So what do you say to them? If they’re saving someone’s life, you let them get on with it, don’t you? So, it’s hard, when you’re not actually in the hospital. I didn’t get to see any...you didn’t get to see anyone. Can’t thank anyone properly.

 

Donna was frequently told that her husband was stable but critical.

Donna was frequently told that her husband was stable but critical.

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At this point did you have any sense of how sick he was? What were your thoughts?

My thoughts were, yes, he’s quite sick, because obviously going back into having more oxygen on the hood, and because of being medical I thought oh, he’s not very good. And also, when the doctors do speak to you in ITU they do tell you the truth. So, it is quite harsh, but they’re not saying he’s better and he’s not, but you know in ITU it’s critical, and you’re hearing that word, it’s critical care. So, it is critical. It is quite difficult because you don’t want to hear that. So, any little glimpse of anything positive…so when there was a little time of ‘he’s stable’, things like that, stable but critical. We were having a lot of stable but critical. So, you had a little bit of hope, oh, he’s stable but critical, because obviously he would be because he’s in ITU. Then when you got little snippets…but the doctors did warn you that if you had a little snippet don’t raise your hopes too much because it doesn’t mean there’s a great recovery, it just means there’s a little bit of progress. So, on one occasion one doctor said there’s 50/50, the next doctor was saying there’s 20/30 and we were like, oh.

So, when we were hearing the bad news, it wasn’t great, obviously, because, A, you couldn’t visit, you couldn’t talk, you were only getting the one call a day, and once you had that call you had to wait round to the next day to get another call. And if you had a little bit of good information, you thought oh, that’s great, you can carry on your day fairly…oh good, there’s going to possibly be a recovery. They don’t give you false hope, but each doctor’s different in how they talk to you, obviously, and some doctors I gather that were brought in from different departments. I know I spoke to a consultant from urology a couple of times, which are still doctors and consultants but obviously they were so busy, and they had to keep up with everybody, I can understand that, but it’s still quite hard just to wait for that one phone call every day. That’s the hardest thing.

So, did that phone call come at a specific time of day?

No. I can’t remember now. At first, we didn’t get a great lot of information. It was a little bit slow when he was on the ward, but in ITU obviously then he was not well so then you were getting a phone call later in the day, usually three o’clock, four, five. Obviously, it’s when they could and when they thought he was stable enough to ring you, and of course I know they’re busy.

And then I found at the very end when he was very, very sick I was having a couple of phone calls 11, one o’clock, a little bit earlier, so I thought oh, if the calls are coming earlier that’s not great because he’s not very good, whereas a later call I thought oh, he’s had a better day. Because otherwise if he’d been really sick in the very beginning, they would have called me earlier and said yes, he’s very sick, we’ll call you when you’ve got to come in. So, it was good for me that the call was later in the day because I felt a little bit reassured at the time.

 

Alisha and her mother felt that the ‘stability’ of their father and husband was positive, but the doctors explained that it could still go both ways.

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Alisha and her mother felt that the ‘stability’ of their father and husband was positive, but the doctors explained that it could still go both ways.

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It was just like every time me and my mum got some level of happiness there was always something that would come and ruin it again. It was like you can’t be happy. So, when we saw that he started to get better, he started to stay at that level, but there was no improvement but no deterioration, which me and my mum were fine with. We were like, okay, as long as he’s stable there’s nothing to worry about. If we’re not seeing improvement, okay, that’s fine, but we’re not seeing any deterioration, which might just mean his body needs to take its own time. So, me and my mum were just like okay, that’s positive, that’s good. But when we kept telling the doctors that they were like this is not a good sign. It doesn’t mean that he’s getting better. Things could go any direction. He could get better, or he could get worse. And obviously they didn’t get better, they only got worse.

The following day – this was two days into his ICU admission…we used to get daily calls from doctors. We were told not to call the doctors because they were under so much pressure, and they literally had one person doing all the phone calls after the doctor rounds to update families. We got told that his kidneys had failed, and that was also such a big shock. We’d just started to accept that he’s been put on a ventilator. How did his kidneys fail? It was just so shocking to me and my mum. How can his kidneys fail now? If he was being given the right medicine, then how are his kidneys failing? We just kept questioning, and the doctors said that sometimes it just happens. We don’t know really, that’s the problem. We don’t know how Covid affects you. He said that we’ve seen the inpatients that have developed Covid pneumonia, it is affecting more than just one organ. The main problem was his lungs that were inflamed because of the pneumonia and the Covid, but we are seeing that people are getting affected on their kidneys and all sorts of other organs, but very commonly kidneys. So, we could see okay, it’s not just him then, there are loads of other people who have been in a similar situation, and it’s being seen that he’s getting affected that way.

Breaking bad news now had to be done over the phone. The clinicians who called family members had mostly never met in person before; this was a source of distress for family members and staff alike. Many recounted that they or their partner or other family members had received a phone call from a doctor to tell them their loved ones may not survive.

 

Ann’s husband came to ICU for three end-of-life visits when her chances of survival were slim.

Ann’s husband came to ICU for three end-of-life visits when her chances of survival were slim.

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But when I was in hospital, when the doctor said that there wasn’t anything they could do more because I was on a hundred per cent oxygen, did I want to speak to a vicar or a priest or whatever you call them. And I said, no, what for? So, it sort of took me…And that at that point, when he said that, I realised then how poorly I was, and I was battling for my life. My husband was called in three times during the period of nine weeks and a little bit I was in hospital for – three times – because they felt that I was going downhill and they sort of had said to my husband, you need to have a conversation with your wife. And he told me that he turned round and said, no way is she going to die, he said, she’s too stubborn. And the thought of leaving my boys and my husband, I just thought, I can’t do it, I cannot leave them. And I think I put down my recovery partly due to my stubbornness. And it’s only from being told by the nurses, and even the cleaning lady who used to go and clean the wards, that they all thought that there was no way I was going to recover.

 

Doctors told Rani that her sister was unlikely to wake up from coma and asked her to come to the ICU.

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Doctors told Rani that her sister was unlikely to wake up from coma and asked her to come to the ICU.

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So, the doctors, they called me, and they said that Nahied’s not responding to any medication at all, we are sending her to the ICU ward for her to get better, and then see what we can do in the ICU ward. If she needs any machines, it will be easy access for them to give it to her. So, she went to the ICU ward, and then her lungs were not working properly, so the doctors decided to put her into an induced coma. And then she was on a ventilator.

At one point, I had a phone call from the doctor, telling me to come in, emergency. It’s not looking good, she was telling me, it’s not looking good. So, I just started crying, just over the phone, and I got my husband, my son, we went to see the doctor, and then she took us to one side in the waiting room, and she said that there’s nothing we can do anymore. We’ve done what we can do, and Nahied’s not responding to the medication, and if she has a cardiac arrest, that means that she’s no more. We will put her to sleep, we will take all the tubes out and everything then.

And I mean, that was really hard for me to take in.  I came home, I told the family that was what the doctors had decided, that if she does have a cardiac arrest, then they want to just put her to sleep, there’s no more better they can do. Because her body was closing down at that time. So, at that time, 100 per cent, we thought we’d just lost her. We’d lost her so…I was planning to, even making her funeral plans, talking to the rest of the family, her children, if you want to go and see her you can, because she doesn’t have long left. So, I was like talking to the family, everyone, making her funeral plans. But the next morning, the doctor called me, and she said that she’s responding. And I was so relieved. Even then, I started crying. And then I told the family. The family didn’t understand, they were like questioning me, how come the doctors were saying this yesterday and now they’re saying this? And I said, well the doctors are giving me the true information as much as they can. It depends on the patient. Yesterday she wasn’t responding, today she is responding. So, that’s like a miracle for us.

And yeah, so I went to see her, the doctor told me to come and see her, we are going to wake her up, so I was there when she woke up from the coma. My son was there. Yeah, so, it’s been very hard. We think that she’s got a second life, she’s come back, she’s got a second life. And the family has come closer, because we’ve seen the death really closely. The family’s come close. Yeah. It’s been really hard for her as well, since she’s come back home. We’ve been there for her as much as we can, the rest of the family has.

Yeah, and what was your life like at that time, when things were so uncertain?

I was very emotional. I was like, crying, explaining to every individual person it was hard for me to repeat myself to everyone. And if you just miss someone, and then they just come back to you, they don’t understand, a lot of things were happening with me, and they just say, oh, how come you don’t tell us? Yeah, they won’t understand. So, I had that pressure as well. But my family’s been supportive with me, back then. But it was very emotional, very emotional, yeah. But I think the family’s bond has grown more closer than we were before. It has, yeah.

 

Johnny’s wife was told that he had a 20-30% chance to survive.

Johnny’s wife was told that he had a 20-30% chance to survive.

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My wife only told me that the doctors are very concerned and everything. I think they put me on forced coma, something like that, so they can do the things they want to do, because they need to save me. So, my wife told me the doctor called her and she’s very nervous because she thought the doctor will tell her I’m sorry, just like that. But the doctor said my condition is very serious, I got the severe form of Covid, and my chance of recovery is around 20 to 30 per cent. So, my wife is crying all the time, and she told my brothers and my sisters in the Philippines, and then they call my other brothers in the US and everything. So, they said they’d pray for me. And when the doctor told my wife that my chance of recovery is very slim my wife showed them a picture of her friend’s husband who has the same condition as me. Even the condition of hospital, he cannot speak and everything.

But she said this man has the same condition as my husband, but he recovered, now he is already at home. That is in Ireland. My wife said probably the doctors were challenged because they are better than the Irish. So, they tried to do the same thing, and eventually I recovered. So, when my wife showed me my picture, I saw myself lying motionless, like a dead person, I was scared. I don’t look good when I’m dead, I should not be dead, because I don’t want to lOKook at it. Even when my colleague, when I saw her, she came and looked at it, I’m like a dead person. I don’t look nice.

 

Shireen had lost many family members to COVID-19 in Pakistan. Based on this experience, she feared that her husband would not survive.

Shireen had lost many family members to COVID-19 in Pakistan. Based on this experience, she feared that her husband would not survive.

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Can you say a bit more about what it's like for you when [partner] was in hospital?

Shireen: I was I was very emotional at that time. I was very emotional; it was hard for me to control myself. I was worried about like my children were giving me so much, telling me he will be back, he will be back, but I was quite emotional. I don't want to, sometimes my son arranged for the face time, but I don't want to see him with the seat back on the bed, lying on the because. I was quite emotional, and I was quite worried all the time. I was crying, crying, crying, but you can't help it, you can't help it.

Yacoob: The problem is that during that time, you know, you lost, how many, his sister, four children he lost.

Shireen: So, because all this in the family it happens and all of a sudden it happens to us, so I was shocked that something, how it's going to happen again, this one and this one. So, the first pandemic in my family, about four person in the family had been, one go just about just about 15 days, ten days, five days, just apart.

Yacoob: And they are all younger than me.

Shireen: All very young.

I am so sorry to hear that. So that was early on in the pandemic?

Shireen: Yes, the first pandemic.

Family in Pakistan?

Shireen: Pakistan. All of a sudden, each one, one by one, one by one. And one of, he has go onto the ventilator in ICU and after that he didn’t come back. So, it was in here also in that January, the second pandemic was very bad.

Yacoob: Because at that time, my time, people think if you are in the ventilation, you got less chance to survive.

Shireen: And that time was the peak time, so it was so bad.

Yacoob: If you weren’t on nasal ventilation then it was very, less chance to survive. So, they took it more serious, that one.

Shireen: That’s why, because my son was so panicked that he was thinking that if you live upstairs on top of the shop when he comes back, he wouldn’t listen to us, he will go down, so it's better to move from here. He was so panicked, and he had got the very bad, he has got the long Covid symptoms, coughing. He is only at that time 35, now he is 36. So still, it's a very tough time because one of the son’s he can't visit during Covid. He’s the only one he has to do everything. My daughter can't visit because she had a baby and this Covid, we had Covid so nobody, you know. So, it was a very, very tough time for me.

News that a loved one may not survive was incredibly difficult to hear. It stirred up a lot of emotions and questions on whether and how best to tell others. When Kate learnt her husband might need to be intubated (a breathing tube put down the patient's throat) – an intervention he may or may not wake up from – she went through what she described as ‘anticipatory grief’ (a term for grief that can be felt before, rather than following death of a loved one*). She found herself trying to protect their children from unnecessary worry.

 

Kate felt ‘anticipatory grief’ when she learned that her husband may need to be intubated.

Kate felt ‘anticipatory grief’ when she learned that her husband may need to be intubated.

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Now, well, you want to know what was kind of going on at home, as well, at that point? Okay. So, I was in contact with, obviously, my colleagues and my friends, and my best friend was great, she was really supportive, but she kind of didn’t know what to do. And I was sobbing down the phone, it’s just not…not me really. But I had some really close friends at work.

But she is very, yeah she’s very, I can’t even describe what she’s like, she was just an absolute rock, because she was saying to me all through this episode, because I would just be crying and crying and crying, and she said, what you’re doing is you’re grieving for him. It’s anticipatory grief, and that was really difficult, especially when he came home, because you do, you just, oh God, look at me, I’m going to have to get some tissues, sorry…tissue in my eyes. You hear about that sort of thing, but until you’re in the midst of it, you don’t really get what that anticipatory grief is about, it’s like you’re kind of girding yourself to be able to cope with it, especially when you’ve got two children at home, ‘cause they didn’t really get what was going on. And I wanted to make sure that they didn’t kind of, I don’t know, you just want to take all that pain away, ‘cause if he got better, I didn’t want that to kind of affect them, but equally I needed to be honest with them, and let them know that daddy was quite poorly.

Anyway, so an awful night, I spent quite a lot of time on the phone with that particular person, because she was just brilliant. And so at the time where I was working, I worked within a healthcare kind of team, so there were lots of people, there were paramedics, there were ODPs, midwives obviously, nurses, and we all talk. And quite a lot of them had been redeployed, and there was one particular who’d been redeployed as an ODP but she was working in ITU, and she was helping to prone patients and everything. And of course, on the WhatsApp groups, you’re hearing stories about people with their lungs that are like concrete, because they’ been intubated for so long, et cetera, et cetera. I’m going to just have some tea, sorry. Tea cures everything.

Okay, so that was quite difficult, because I needed to hear it, I needed to see those stories, but equally they were really tricky, because then what I was doing, is thinking, okay, well this is what’s going to happen next. So, I was almost predicting.

Many did not survive their time in ICU. If clinical teams anticipated that someone was not going to survive, they invited family members to come to hospital to say goodbye (see ‘End of life visits’). For many, this was the first time they had seen their loved one since they went to hospital. For some, this was the last time they saw their loved one alive.

Some patients, however, went on to turn a corner. Most of them only realised how critically ill they had been after they came out of hospital. This was also when they started to come to terms with surviving when so many others had not (known as ‘survivor guilt’), and what their critical illness with Covid had meant for their family members and friends (see also ‘Coming to terms with long-term effects’).

 

Neil talked through feelings of survivor guilt in his support group. He advised never to feel guilty for surviving.

Neil talked through feelings of survivor guilt in his support group. He advised never to feel guilty for surviving.

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We found when we all first started being on the group is, why me, why have I survived? There was a lot of survivor guilt. Why did I survive? And I questioned it myself, I questioned why have I come through this, what am I meant to do now I’ve been given this opportunity to live? And all I try to be is the best person of me, the nicest part of me. But we all did have survivor guilt, every single person on my support group I’ve met they all questioned, why me, why didn’t I die? Well, because you didn’t want to, subconsciously you did not want to die, you did not want it to beat you. If you go in with the mindset that you’re going to die, you probably will, but if…like me, I went in there I’m not going to be…if I’m going on a ventilator I’m going on a ventilator, but it’s not going to kill me. I’m coming through this at the end of it – and I did. And that’s what we’ve all said is that we were all positive that we wanted to survive. And don’t ever, ever feel guilty if you have survived something, whatever it is; if you’ve been into intensive care for whatever reason, if you’ve survived you’ve survived because your body is telling you that you want to, and your brain is telling you that you want to live. If you don’t want to live you won’t, but if you are strong enough and you don’t know it…you probably don’t know that you want to, but you will. And that’s the only advice…that’s the other bit of advice I can give is, don’t ever feel guilty for surviving, because doctors and nurses want you to survive and your body wants to survive, so that feeling of guilt is irrelevant. It’s hard to take at first, but you never felt guilty for surviving.

 

Paul had bouts of depressive feelings after waking up from ventilation when he realised what his family had been through whilst he had been in coma. He hoped to raise some money for the NHS to thank staff for saving his life.

Paul had bouts of depressive feelings after waking up from ventilation when he realised what his family had been through whilst he had been in coma. He hoped to raise some money for the NHS to thank staff for saving his life.

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So, can you remember how you felt in this time in the ICU?

I got a bit depressed with everything, how bad I was, what I’d put my wife and my family through. They were traumatised more than me. I was in a coma; I didn’t know what was happening. I felt annoyed that they had to endure phone calls and me nearly dying. It was as bad as that. I remember thinking after I came out of hospital, when I was home the seriousness of it all. The one night I realised that my wife either had to arrange a welcome home party for me or arrange a funeral. It was as bad as that at one time when I was at my worst. I thought, how would I have been if it was my wife in hospital on life support? I wouldn’t have been able to manage. I don’t handle stress particularly well. I just don’t know how I would have felt. Trying to run the house, the 12 pups and things like that. But my wife managed all that, kept the house running. She cried lots. She painted a fence and the house and the garden, her and the neighbour. The house was spotless when I came home. She was de-sanitising everything, getting it ready for me coming home. I was thinking just crazy things. If I did pass away and I died, how would she have survived the first Christmas?

We were due to celebrate our 25th wedding anniversary last September. We were going to go on a wee cruise or a wee holiday, but with lockdown and things like that we only went for a meal. It was going to be a big anniversary, but we couldn’t have anything really. So, I was very confused when I came too, and I had spells of real depression. But then the nurses were great. In the middle of the night… I never went to sleep. I came out of a coma, I never slept for the next three nights because I was too scared of shutting my eyes and not waking up. But the middle of the night nurses would come in and do their observations and they could see I’d be crying, and they would just hold my hand and talk, speak, reassure me that okay, there’s a long way to go but you’re off the kidney dialysis, you’re off this machine, you’re getting stronger, your pulse is stronger and you’re just doing better, it’s great to see that you’re doing better, so you need to try and stay positive. You’ll soon be going home to your son, and you can play football with him, and you’ll see the pups and there’s lots to look forward to. So, the nurses were great at keeping me positive and reassuring me.

 

Goutam learned from conversations with his wife that he had been too ill to undergo a hospital transfer that would enable him to get a particular treatment

Goutam learned from conversations with his wife that he had been too ill to undergo a hospital transfer that would enable him to get a particular treatment

Sex: Male
Age at diagnosis: 52
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You said that there was a particular time, was it around the 16th of April, 15th or 16th of April when you really took a tumble. Did you, did you know that at the time, were you aware or is this something that you only became aware of afterwards?

No, I became aware of it afterwards because then like, you know, and then there, that’s when my wife told me this is what happened sort of thing. I wasn’t at all aware of, you know but that I think what happened is that was so bad somehow there was something happened there so badly that it wasn’t going away in spite of giving all the oxygen it wasn’t. The body was still very low on oxygen, and they said like, you know, because that morning the doctor said for me said like we are trying, giving our last shot because he is the sickest guy. And we are trying to move him to [hospital] because that is the machine is called ECMO which will pump the blood out of your body and then oxygenate it and then put the blood back into your body and that’s the last thing that we could do.

So, we have time to move him to, there are two machines one in [place] and one in [place] but the [place] one is being used for the heart persons so as a Covid person you can’t use that so the same machine cannot be used. So, the only machine that can be used is in [place] and so we are trying to move him to [place] next. But the, then next morning they got like they said, the doctor phoned them and told them like okay we have discussed among ourselves, and I don’t think that he will survive the journey. So, we need to do what we need to do in [place] so we so that ECMO was ruled out and those two nights tho-, those two were very dark like, you know. When going back I spoke to my wife and see each other so those, those are the really hard time because you just don’t know. They said that like they will not try to just make you, you know, not trying to give you any, any, any like news like okay you are hoping for we just wanted to make you aware that be strong and like, you know, this is reality just pray more. And that’s, that’s all they say just keep praying and we are doing our best. So, yeah so obviously for myself I didn’t have a clue like at that time like I didn’t know whether it was 15th April or 20th April or 1st April I had no clue at that time and so, but for me and the family I think that was the hardest two or three nights really.

Conversations about the limits to interventions and treatments

ICUs provide the highest level of care that can be offered to someone. Survival can be uncertain. Not all treatments are appropriate for every patient, or only appropriate up to a certain point; in some cases, treatments can do more harm than good.

When someone deteriorates significantly or rapidly, clinicians tried to speak to the patient and family members about possible treatments as well as about when these may be stopped. Doctors may mention putting in place a ‘ceiling of treatment’ or ‘ceiling of care’ – describing the highest level of intervention deemed appropriate by the clinical team, aligned with patient and family wishes and values*2. If this point is reached the focus will switch to palliative care, no longer aimed at recovery but concerned with making a patient comfortable and free from pain.

Importantly, not all patients with a ceiling of care in place will die, some may well recover. Some people we spoke to had had one or more conversations with clinicians in which a ‘ceiling of care’ was mentioned, but fortunately never reached this point.

 

Ann, who has fibromyalgia, was told by her doctors that they were afraid that she would not survive sedation, so she agreed to the continuation of non-invasive ventilation instead.

Ann, who has fibromyalgia, was told by her doctors that they were afraid that she would not survive sedation, so she agreed to the continuation of non-invasive ventilation instead.

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From what I’ve been told I was in a chair, but I thought I was on the bed, but I was in the chair, and I just flopped. And then I was rushed to ICU. I can’t remember much in the beginning other than the doctors had put me on a hundred per cent of oxygen, and I was sort of drifting in and out. And I recall the doctor coming to the bed and saying, you’re on a hundred per cent oxygen, there isn’t anywhere else we can go with this. He said they didn’t want to sedate me, you know, when you’re sort of put into an unconscious state, because of my other underlying health issues [blood clotting], and they said I wouldn’t survive it.

Some mentioned that ‘Do not attempt cardiopulmonary resuscitation’ (DNACPR, DNAR or DNR) decisions were made by their clinical teams at a time when they were very poorly. DNACPR means that if somebody’s heart or stops, or they stop breathing, their clinical team will not attempt to restart it. This is not meant to affect other care. Clinicians will continue to do everything else to keep patients alive.

Patients can refuse cardiopulmonary resuscitation (CPR) as anybody has the right to refuse a medical treatment if they do not wish to receive it. The decision not to attempt CPR can also be a clinical treatment decision if doctors feel the attempt will not help somebody live longer, or is likely to do more harm than good, for example if someone has already suffered substantial organ damage from illness or is approaching the end of their life. If a doctor makes such a decision, they are required to give the patient the opportunity to grasp what a DNACPR is, to explain why they think it is appropriate, consult them on what they would want, and what a good life after resuscitation might look like. If somebody is unable to grasp this information, then doctors will speak to legal representatives or family about this*3. The decision is documented on a special form.

Some people who recovered from being critically ill with Covid only learned that this medical decision had been made after they had come home (see also ‘Coming to terms with what happened’). The DNACPR was withdrawn as soon as they were deemed strong enough to benefit from CPR.

 

Caroline did not receive a patient diary, but going through the hospital notes made her realise what medical decisions had been made. It made her realise just how ill she had been.

Caroline did not receive a patient diary, but going through the hospital notes made her realise what medical decisions had been made. It made her realise just how ill she had been.

Age at interview: 58
Sex: Female
Age at diagnosis: 57
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Oh, and I’ve also got my hospital notes now and I’ve gone right through all of those. And that’s been really helpful. I was a bit…I was hoping to go through them at the hospital with somebody, but of course Covid, wasn’t possible. And unfortunately, they didn’t keep a diary, a patient diary. They usually do, but because of Covid, they were so stretched they didn’t keep one. And that I really do regret because I think that would have helped me hugely.

What would be in those diaries?

It’s patient…a nurse really writing about what the patient has done and how the patient has been that day. So Michael Rosen’s got one and he’s putting out a book based on it. And the nurses basically write the times you did the first thing. So they might write, yeah, you breathed on your own for an hour today, or you were very upset about this today. And it’s like a diary that you might keep. It’s a bit like the blog I keep really of big moments and it would have been nice to have that.

Going through the notes was difficult in many ways because they’re so jumbled. So you get all the nurses’ notes together and all the doctors’ notes together, it’s all on computer file, and all the…what other notes, all the notes from the ward from the nurses and then all the hospital tests together. So you have to sort of merge all of those. And then a lot of them are scanned in reverse order because clearly, obviously they put the latest one on top. And then they’re split between the computer files as well, so file one will end halfway through one set of notes and then the next bit might be in file two.

So I made a sort of timeline of it and that really helped me and really brought home to me how ill I was, you know. Seeing that I was put on a DNAR on my second day and it would have been the first day but they hadn’t had chance to discuss it with my husband. And seeing the doctors writing, I think this poor woman is likely to lose all four limbs, if she survives. And it is looking very unlikely or the future looks very bleak, this patient will probably not survive, you know, in complete organ failure. That’s…yeah, that’s quite a shock. But it was good because it did give me a timeline. It also showed me that I was having conversations with people and meeting people that I have no recollection of whatsoever. And that was quite difficult.

The DNAR, is that something that you still have now or…?

No, it’s a…

That’s been undone?

Do not attempt resuscitation and it was removed…they said initially it would be on me for the entire of my stay in hospital, which shows that they didn’t expect me to survive. But when I moved up to the ward, that was when it was rescinded.

I was shocked by some of the numbers though, things like my white blood count. I had to go and look up all the ranges and seeing how high my white blood count was and how low my platelets were, that was…you know, when I saw what the normal range was, it was, oh, wow, I really was ill, wasn’t I. And I knew I was, but it really brought it home.

Discussions about a ‘ceiling of care’ or DNACPR can understandably be upsetting for family members, particularly if these are not clearly explained. Before Covid these conversations would have happened mostly in person, and often family members would have met the clinicians who delivered this news to them before this conversation. During the Covid pandemic these conversations more often than not happened over the telephone with unfamiliar clinicians, which affected how the information was given and understood. Sometimes family members spoke to multiple doctors to understand why a decision to limit interventions had been made.

 

Sadia understood why a ‘ceiling of care’ had been put in place for her father when it was explained to her by a second doctor.

Sadia understood why a ‘ceiling of care’ had been put in place for her father when it was explained to her by a second doctor.

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Yes, he was on the 14 day mark, so I got the call on Sunday morning, that his oxygen saturation was quite low, I think it was like 83, or 85, and he wasn’t feeling great. So, I took him to the hospital, and then he was taken into A&E, and then he was admitted. So, at that point he was quite stable, so that was Sunday morning, and he was on low level oxygen. I think one to two litres and in a ward and everything, and was quite fine, and on the Wednesday, I think, we’d spoken to one of the doctors, and they said, you know, give it a couple more days and he should be home. But on the, I think, so overnight on that Wednesday, he must have suddenly deteriorated, because I got a call on that Thursday morning, to say that he was quite unwell. I think his oxygen saturations had gone very low, and I think, again, his lungs, I think they’d done an x-ray and it wasn’t looking good.

I think at this point, you see this is the stage where it starts to get a bit muddy, because at this point, I think they’d spoken to my dad, and pretty much said, we don’t think you’re going to, this isn’t looking good at all for you.

I’d spoken to one of the junior doctors, and she’d said to me, and again, the information that was coming out wasn’t very clear, they just were like, oh, he’s suddenly deteriorated. One couldn’t understand why or where that had come from. And pretty much, you know, his…they didn’t even have this discussion, they said, his ceiling of care is going to be intensive care, the CPAP machine in intensive care. And the next 24 hours are critical. If he doesn’t improve, then that will be the ceiling of care. And it was kind of like, where has this come from?

And it was a real shock to the system, it was like, well, you know, what about ventilation, what about this, what about that? Obviously, as the conversations went forward, they explained that ventilation wouldn’t be the right option for him, because he is 78 years old. And basically the prognosis for anyone that has gone on ventilation, hasn’t been good at that age, and he basically wouldn’t survive that.

Witnessing other people’s deaths

Due to the infectious nature of COVID-19, patients who still tested positive needed to be separated from other patients. This meant that Covid patients were in ICU and on the ward with other Covid patients, surrounded by people fighting the same disease for whom survival was also uncertain. For some, this translated into a camaraderie between them and other patients. But other people’s deterioration made them feel extremely anxious about their own chances of survival, especially when those patients had seemed to be relatively well or at least getting better.

Sometimes when staff drew the curtains around a bed, other conscious patients knew that this meant that things were critical for that person. Whilst they could not see, they could hear what was going on. This left them to imagine what was happening, which could cause lasting trauma. When they knew that the patient had died, this made them weigh up their own chances of survival.

Some people were diagnosed with post-traumatic stress disorder (PTSD) following these events and suffered from what is known as ‘survivor guilt’ – feelings of guilt, self-blame, anxiety, and helplessness associated with surviving an event whilst many others died.

 

Witnessing the death of another patient made Brian wonder where he was in the grand scheme of things.

Witnessing the death of another patient made Brian wonder where he was in the grand scheme of things.

Age at interview: 55
Sex: Male
Age at diagnosis: 55
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But even when you’re in intensive care, when you’re looking at other people and here I sit and there’s, you know, you’re looking at all these people with different… You’re there for a reason. You may not feel…you, kind of, feel detached that all of these people are worse than you and, actually, I feel much better. And, I think I was, I think I was in a much better place than all of them, clearly. But even downstairs you’re still trying to work out… I mean, the old boy that came in…this was in cardiology and he came, they wheeled him in, he was at the end of his life with lung cancer and he died, he died that night. He came in, yes, he was there less than one day. So, when you’re when you’re watching all of that, watching his family come in and his sons come in, and just watching all of that, you know, different, all different people going through all different things, just trying to figure out where you are in the grand scheme of things, really. From an appreciative side and just trying to weight it all up, weigh life up, ask the question.

 

Zoe was moved from mechanical ventilation onto CPAP. Being on CPAP meant that she was aware of her surroundings, including the deaths of other patients.

Zoe was moved from mechanical ventilation onto CPAP. Being on CPAP meant that she was aware of her surroundings, including the deaths of other patients.

Age at interview: 46
Sex: Female
Age at diagnosis: 45
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So, the next thing that I would remember would be being woken up in ITU to be moved from a ventilator onto CPAP, but it’s still very, quite hazy, my time in ITU. My time in Critical Care is a lot clearer to me, because obviously, well they put me on CPAP obviously it’s to help with your breathing, but you’re aware of the situation. And I think at that time in it was the very worst time to be hospitalised, because it was such a new virus that no one knew anything about. There was a lot of panic, and kind of arguing about PPE, which is understandable. And consultants feeling frustrated because they didn’t, you know, ‘cause patients, I guess for them, as professionals, you get a patient, and you think you’re going to be able to treat them and sort of fix them or some of them. It wasn’t like that, there were just lots of people dying.

So, the ventilation part, I clearly don’t remember, ‘cause I was asleep. Being put on CPAP and seeing kind of the chaos and sometimes seeing death, in the same ward that I was in, was really, really distressing. But at the same time, it wasn’t, I didn’t feel unsafe. I mean, I have a long relationship with, because of my haemophilia. I knew I was in the right place, but it’s just that you’re very aware that there’s a person in the bed opposite you, and then suddenly there isn’t. Or there’s a person in the bed next to you, and suddenly there isn’t. So, I think you kind of get in a thing of thinking, am I next? So, I found that really hard.

I just found it really hard, and really hard to watch because they’d pull the curtains around someone who was clearly struggling, and then if that person didn’t make it, they would pull the curtains round us, and then you know that where that person was going would only be the morgue.

Yeah, I’m sorry, yeah.

So that stays with me a lot.

Yeah. And were you aware at the time that these were also Covid patients?

We were all, everybody in where I was, because at that time in, it literally, especially since the date that I was admitted, things were only getting worse by the day. So, I think at the time when I was in ITU, there were certainly three to four floors of ITU patients, and they were all Covid. So, they was no mixing of Covid patients with other regular ITU patients.

Yeah. Yeah, I can imagine that that’s really distressing, to just see that so close. And you were awake and aware enough to see it?

Yeah. And, you know, the staff really tried, apart from helping me medically, they were really, really kind to me. So, I felt like everybody had a lot of kindness and a lot of empathy, but there’s nothing you can do, I guess, when you’re in a ward where people are constantly dying. And even with breathing equipment on, you form semi-relationships with people, even if it’s just a wave or a nod, or a kind of thumbs up, with other patients that were on CPAP. And then sometimes, just, you know, there was a couple of people that I really remember that I know they didn’t get to go home.

Yeah. That’s really hard.

But I still feel, even now, I’m just so lucky, so like I said, if I cry about it, it’s ‘cause of gratitude, it’s not kind of tears of upset about how I was treated, or how the hospital managed anything. I have nothing but amazing things to say about it. But I also wouldn’t wish it on anyone.

Yeah, of course. It can be those two things at the same time.

Yeah.

Yeah. And you said you vividly remember the other patients in the room?

You just kind of, because the day’s such a funny day, of sort of half routine and half panic, but you definitely get to know faces. One patient who was opposite me, a man who was much older, and there was a lady next to me, they both didn’t make it. And it’s hard because it’s not like in a normal ward, where you’d maybe establish a relationship and you’d talk to anybody, because you can’t. I mean just struggling, just to even answer the consultants’ questions or anything is a struggle. But you do form a bit of a bond, because it’s sort of like you’re all in a war zone together.

 

When the nurse told her the patients across from Ann died because of underlying health conditions, she worried more, because she too had pre-existing health issues. Ann was later diagnosed with PTSD.

When the nurse told her the patients across from Ann died because of underlying health conditions, she worried more, because she too had pre-existing health issues. Ann was later diagnosed with PTSD.

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I mean at the time when you catch Covid, aren’t you, I didn’t think about my other underlying health issues. But when the nurse said, when the two people died opposite me… I mean I know the one in the middle, that he was quite poorly, and old as well, it sort of…when she said that…because I said, oh, why did they die? I said, because I thought they were going home. She says, well, they had other underlying health issues. And it sort of scared me more because I knew I had other underlying health issues. And I thought, well, if Covid doesn’t finish me off it’s probably going to be one of my other underlying issues.

More so with the clots in my lungs, I thought, more so, rather than arthritis; because I don’t know anybody who’s died of arthritis, but clots in the lungs can be quite dangerous, especially if they travel to your heart. So that was scary. But Covid, because it was so new, and because nobody understood what Covid really was, and the things that it could do to you, I didn’t really think about it that much, other than that I was very, very poorly. But of course, when it, you know, all the things I was going through, and they said it was related to Covid, and it just made me more aware of how dangerous it is.

And in the time I was there, the five people that were on that ward all died.

Oh, gosh.

I never suffered at all with anxiety but seeing these people – I mean obviously I didn’t see them actually die – but the machines that were brought in, and within just days of them seeming to be okay they just went downhill straightaway. They were put on monitors, oxygen machines, everything; but unfortunately… Now whether they had other underlying health issues maybe, but they just went down very, very quickly. And I saw each one of them go; because you know when someone has died because the nurses and the doctors, they pull the curtain around, they pull your curtain around. And then you know that the bodies are being taken out.

And that happened to all the five of them that was on that ward. And so, I was the only one left on that ward. And my anxiety levels went through the roof. The doctor diagnosed me with post-traumatic stress syndrome because I could not, whichever way they talked and tried to distract me and everything, my anxiety would not come down. And this went on for, I think it was the last week before coming home is when my anxiety levels started to get a bit better; they weren’t completely gone. But it was only afterwards when I came out of hospital, I thought why was I going through this, because I’d never experienced anything like it before.

 

Emma witnessed the death of a patient who decided against mechanical ventilation.

Emma witnessed the death of a patient who decided against mechanical ventilation.

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Do you remember any of the patients around you?

Yeah. You couldn’t see them, but you could hear them, so you could hear the things that they were saying, and then you could hear when one passed away. Literally everything, you could hear the nurses with them, and then you could just…you could hear people, even though…so where you are or where I was, there was a patient over that way, and they weren’t…I couldn’t see them. There was nothing wrong with how they were set up, it wasn’t like that, it wasn’t like, oh, it was so over-crowded, everyone was jammed, it wasn’t like that at all. You’re in a hospital, you’re in a like…it’s not even like a ward, it’s not like when you go, you see things and there’s bed, bed, bed like that. It wasn’t like that at all, but I could hear this person, and they were…they didn’t want to be taken to be ventilated, they didn’t, they really didn’t want to be taken.

And in my head, I’m thinking, I don’t blame you, I don’t blame you, I’ve just been through that, I don’t blame you. But then I wanted to turn round to them and go, but it could save you. You’ve got to, you don’t…and ten minutes later, that person was dead. They didn’t make it, and they weren’t old, they weren’t old at all, they were in their forties. Yeah, but they just…and I could hear them, but they wouldn’t go, they just wouldn’t go and be ventilated. They had everything set up, and they were taking them down, and as they went to take them down, they were refusing to go. They literally were, well, I’m not going, and they became a bit…not aggressive as in hitting or throwing things, they became aggressive in their voice, in their tone.

And I just…I was getting so angry with them because I’m like, why aren’t they just taking that patient? Why aren’t they just taking that patient and I don’t know whether…knocking them out, I don’t mean knocking them out, I mean, like sedating or something. They could have saved them, and they didn’t. They just…this person died, and then another lady, she died as well, and she was only young. And that’s when I thought, I’m not going to get out of here. Yeah. So, you do remember them, and you know who’s around you, but you don’t see who’s around you, you don’t…you don’t know who they are, you don’t know anything like that at all, but you know that there is people around you who are really poorly. Yeah.

Some family members and friends felt that witnessing other people’s deaths had been a contributing factor to their loved one’s demoralisation and physical decline. For a few, it was also a motivator. Whilst Carl found other people’s deterioration shocking and difficult to witness, it also made him more determined to get better.

 

Rhod saw patients around him suffer and deteriorate, but there was no way to escape it.

Rhod saw patients around him suffer and deteriorate, but there was no way to escape it.

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So, we were several days into, into ICU, and each day his oxygen requirements went up and his oxygen saturations became progressively lower. And I think he was seeing people in the bay around him deteriorating faster than he was and he was seeing patients intubated and seeing patients proned. And at one point, he had a bed by the window but at one point he just felt like he just couldn’t bear seeing the trauma anymore. And he couldn’t…even if he closed his eyes, he could still see it in his mind’s eye, and he felt there was no escape. He couldn’t…to begin with he was able to get out of bed, but then as the days progressed, he became weaker and weaker and wasn’t able to. And he felt like though it was a trauma that he was in and could do nothing about.

So, he spoke to one of the medical consultants and just said is there any way that he could be moved out of that room into a side room. But our, our need for side rooms is really great and we don’t have that many side rooms, and at that point his oxygen requirement was so high that it would have been unsafe to move him anyway.

 

Carl felt stronger about wanting to survive when he saw other patients deteriorate.

Carl felt stronger about wanting to survive when he saw other patients deteriorate.

Age at interview: 50
Sex: Male
Age at diagnosis: 50
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You look round and I could see everybody else how ill they were and then it sort of dawned on me that maybe I’m not that good after all, and maybe I’m just as bad as them, I just don’t realise it. And then I started asking more questions to the nurses and stuff, and they were like no, no, you'll be okay, you’ll be fine. But that was probably one moment where I really doubted, that I thought actually maybe I’m not good and maybe this is not…you think you’re okay but you’re in a false sense of security here because you’ve actually got a lot of things still wrong with you and looking round at other people.

Lots of things were flashing through my head. And you could see other people that didn’t seem to be getting better, they seemed to be getting worse, and I almost thought I’ve just got to survive this, I’ve got to get out of here, I must survive. It’s almost like self-preservation. It’s really strange how I probably get quite upset now when I look at people in the ICUs on TV and stuff, but I was just so determined to live. I had lots of other things wrong with me, my feet were black from pressure sores, I couldn’t feel my hand, I’ve got not much feeling in half of my hand and all the way down to my shoulder and stuff, arm and shoulder. And things like that didn’t bother me; I just wanted to just get out of there, just survive.

*Marie Curie - What-is-anticipatory-grief

*2 Walzl, N., Jameson, J., Kinsella, J. et al. Ceilings of treatment: a qualitative study in the emergency department. BMC Emerg Med 19, 9 (2019).

*3 NHS (n.d.) Do not attempt cardiopulmonary resuscitation (DNACPR) decisions.

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