Experiences of Covid-19 and Intensive Care
Admission to the ward and ICU
Here you can listen to people who have been admitted to an Intensive Care Unit (ICU) and family members talk about their experiences of going to hospital and the ICU admission. This page covers:
- Learning about the cause and severity of someone’s condition
- When someone’s condition worsens
- Conversations about mechanical ventilation
- The transfer to the ICU
Learning about the cause and severity of someone’s condition
Several people we spoke to were relieved they were being taken to hospital, knowing that they would now be looked after. At the same time, having to go to hospital was frightening, especially because many were aware of the high mortality rates associated with severe Covid.
The progression of illness with Covid was often faltering. Some people like Wendy and Sadia’s father were admitted to hospital, then discharged, and then re-admitted.
Wendy spent three days in hospital and was then discharged. Three days later, she was re-admitted.
Wendy spent three days in hospital and was then discharged. Three days later, she was re-admitted.
I wasn’t feeling very well on 17th…18th December and my daughter had already had Covid a couple of weeks before, so it was suggested that I went and got a test done. So, I went down to our local town and got that done and that came back as positive. And I didn’t feel too bad initially and then within 24 hours I started to feel very poorly.
And then by the Monday I had to go to hospital because I couldn’t…I had to get an ambulance out because I couldn’t breathe. I have an underlying health problem which is an interstitial lung disease so I knew that they would be affected. So, the ambulance came out and they did all the checks and they said, no, you’ve got to go in. So, I went in, and I was in for three…four days and I came home Christmas Eve. And I felt…I thought it was over because I felt much better. I’d been given various drugs while I was in hospital, but I didn’t go to ICU at that stage.
Then Christmas Day, by the end of Christmas Day, I felt absolutely so ill. So, I went to bed and then the next thing I knew it was…so that was the 25th, the next thing I knew it was 27th December and I woke up not being able to breathe. I kept on having this, like, very heavy feeling on my chest. And again, it was four o’clock in the morning and I got my husband to phone the ambulance and they came out and I was blue-lighted in that time. And my sats were very low, my breathing was horrendous so… and when I got to A&E it was like a scene from Casualty, there were all these nurses and doctors waiting, a bed with all tubes and everything, so [non verbal speech].
So, I was taken straight to resus, and I don’t really remember a huge amount about it. The things I remember are the funny things like the doctor apologised for having to take my nail varnish off, which I’d painstakingly done Christmas Eve so that I’d look nice for Christmas Day. And we had a discussion about…and I said it was vanity, and then we had a discussion about, no, it’s standards. But he was so kind just by doing that, and it was an icebreaker and it made me feel more confident for where I was. A lot of people have said, were you frightened, and at no stage was I frightened because I just felt everybody made me feel so at home, if you see what I mean, and so safe.
In hospital, clinical staff used tests and scans to determine the severity of the patient’s condition.
Family members described how shocked they were at how seriously ill their loved one was. When talking about their father’s experience of admission to hospital with Covid, Alisha said she had initially thought he was not severely unwell and that he would come home soon. However, hospital tests revealed that he had a pneumonia in both of his lungs. Alisha and her mother Rita had not expected this.
When someone’s condition worsens
Doctors and nurses use tests to develop a treatment plan and decide where in the hospital somebody may be best cared for, ranging from the general ward to the ICU.
Why do some patients with Covid-19 need intensive care?
Why do some patients with Covid-19 need intensive care?
There's probably two main reasons why different patients become so unwell. I think the first point to remember is that huge numbers of people have been infected with this virus, and whilst only a small proportion of them become very, very seriously ill with life threatening disease, the massive number who are infected means that we still have a very, very large number of people who need intensive care.
I think that the first main reason why people become very ill with Covid-19 is because they're either of an older age group or they've got other medical problems. That means that when they get sick, they get more sick than a younger, healthy person, but it's also true that the genetics differences between different people have put some people at more at risk of serious disease than others, and we definitely have seen young, healthy people who've developed Covid-19 who've needed intensive care, including some of our own staff.
The ICU provides acute services with high staffing resources, the use of specialist equipment and specialised treatments. Patients severely ill with Covid are admitted to the ICU if they required intensive treatment and monitoring, for instance if one or more organs are no longer working well, and if doing so is seen as appropriate for them (see also ‘Experiences of CPAP, mechanical ventilation and proning’).
A lot of the people we spoke to were already very ill when they arrived in hospital, and were transferred to ICU almost immediately. Others like Jenny, Brian and Alisha’s father Arjun were cared for on a general ward first before being transferred to ICU when their condition deteriorated. Alisha’s father deteriorated whilst on the ward, and was moved to ICU after 10 days. Brian was on the ward for five days during which he was very exhausted from his body not being able to absorb enough oxygen. He was then moved to the ICU.
Brian was taken up to intensive care after five days on the ward.
Brian was taken up to intensive care after five days on the ward.
My stay in that particular ward, what I noticed was, and I think I was in there for about…I must have been in there for five days, is that slowly but surely trying to keep my pride and dignity so I could go to the toilet. Every time I stood, one minute I would be talking to two blokes, two men opposite me, just chatting away, and soon as I got the nurse to pull the curtain around and pee in the bottle…and all I had to do is put the bottle back on the side of the table and get back into bed. I was absolutely wiped out, I was exhausted, straight back on oxygen.
And, I remember the two guys, because one of them I still talk to now, we still phone each other. He said it was just unbelievable, one minute you’re talking, have a pee, screen comes across, screen comes back and it’s just like a different person, I was exhausted. So, I think what was happening is, I became so exhausted with that, that’s when, I suppose, they’re looking at all of my stats over, I don’t know, however many days, and they’re just watching things slowly, slowly get worse.
So, the intervention came when they took me up to intensive care and I was put in a side room, which was a relief for me because, you know. I’d listened to so much nonsense and stress with this old boy downstairs I thought, at least I’m in a room and I haven't got to listen to the nonsense. And also, when you’re on these wards, you know, there is everybody else’s machines going, they’re bleeping, and so I was just, sort of, relieved at that point to be on my own.
The transfer to Intensive Care
People admitted to an ICU are critically ill; there is a chance that they may not survive (see also ‘Uncertain survival’).
Of the people we spoke to some did not remember the transfer to ICU. Others described their memories as a bit ‘hazy’. Memory loss is common for ICU patients, which can be explained by the medications and lack of oxygen, or by extreme stress and anxiety. Michael recounted: “For me it wasn’t the case of let’s say, oh, we’re going to send you to ICU, I just found myself in there.”
When they were transferred to an ICU, people we spoke to were often so unwell they found it difficult to concentrate or to stay awake. This meant that many could no longer communicate through the small screens and buttons on their phones. Because hospitals were closed to visitors for infection control, this meant that family members and friends no longer heard from them. Those at home had to rely on the ICU staff to keep them informed (see ‘Contact between family members and staff’).
What is the role of family members on the intensive care unit? How have relationships between staff in ICU and family members chanced due to Covid19?
What is the role of family members on the intensive care unit? How have relationships between staff in ICU and family members chanced due to Covid19?
Most doctors have a relationship directly with their patient and the patient is the person they get to know and the patient is the human being that they are trying to help in whatever way they can. In intensive care when your patient is unconscious, you for many weeks sometimes don't ever get to properly meet them and understand who they are and their personality, their character. You know, whether they're fun or whether they're serious or whatever it might be. And so, the way in which we get to understand the patient is through getting to understand their loved ones, their friends, their family and so on. So, we are very used in intensive care before the pandemic to communicating an awful lot with family, whether it be when we're going around on our ward around and it's maybe in the evening and the family are in visiting patients and we say hello at that point and often answer questions. Or maybe it's arranging a particular meeting to discuss the challenges we've got with a particular patient and how best we solve them, how we understand what that patient's wishes might be. Really so few patients write down what their wishes are before they become ill that we’re critically dependent on family to explain all of that to us. And obviously those very difficult conversations are much better had in person, and we've always done it that way, and we spend a huge amount of time with our patients’ families. To have that taken away from us was actually really difficult. Because it was almost like having the patient's personality taken away from us. That human being in the bed. We didn't really know them like we used to know them and all of that is very hard. And certainly, you know, I mean, I can remember a particular case of having to stand by someone's bed and phone their wife to tell them they were dying. It's not easy. It's not easy because they can't see them, they can't understand, they can't visualise or picture - if that's somebody who's never visited an intensive care unit before, they're not going to be able to truly picture their loved one and understand why they're so ill and they're just dependent on our word and our professionalism. And, you know, so those two things together, the lack of support as a doctor or a nurse from the family and the extra burden of them relying on us together is very, very hard, and I'd say that was the hardest thing. Certainly, for me the hardest thing in the pandemic.
And how has that changed over time if it has?
Well, very early on, I mean obviously, so many parts of society would shut completely shut and hospitals were completely shut and hospitals aren't designed to be closed places. They're designed to be places for people to come and visit and come and go. And you know that that's the normal for hospitals and so closing them and making them such closed spaces in the first wave was big shock to us, was very difficult. We didn't really have any technological response to that. It may seem absurd, but a lot of hospitals weren't even equipped with Wi-Fi, so, you know, using tablet computers to make Zoom calls or Teams calls or whatever it might be was not something that we ever did before, and actually probably most of society wasn't that used to online video calls either. We're all completely up to speed with it now. Pretty much everybody, but before the pandemic, nobody really did that, and we certainly didn't do that with patients. And it took us quite a while to set up those systems so that we could have in many cases we have medical students coming around with tablet computers and giving them to patients so that they could speak to their family or their family could see them if they weren't able to speak, so that we could say hello so that the family could see the doctors and the nurses looking after their relatives, their loved ones. And more and more over time actually using that as a medium to communicate directly with the family ourselves. But there were so many things to do. There were so many systems to set up and scale up, and that was one of the slower ones. And I'd say that was the one of the ones that we perhaps underestimated at the beginning. The impact it would have and the need and the importance of that need. I think by the second wave most hospitals were super-efficient: We had communication hubs. We put special messages in the notes in in the Covid ICU that are all closed, so people working on computers outside the intensive care unit could pass those messages to family and those teams would feed back to us if there were particular problems or if we needed a particular phone call. We had to schedule phone calls to make sure that everybody had had an equal opportunity to speak with doctors and nurses if those things were needed. And like so many things in life it's often the better-off people who have the communication skills to get what they need from doctors and nurses and so on, and it's the underserved who don't have those skills and who are often the most neglected. And making sure that didn't happen was a very difficult thing for us.
Very occasionally, family members were on the ICU at the same time. Chris was in ICU alongside his grandfather Royston. He recounted: “I got into the hospital at two in the afternoon. At two in the morning I got told I was being taken to intensive care. I remember being wheeled to intensive care. I went in and all the nurses came to assist me, get me in the bed, strapped into the CPAP machine. One of the nurses then came over to me and said, 'Chris, your granddad’s just seen you come in, he is two beds over there.'”
Conversations about mechanical ventilation
Sometimes it was clear to doctors and nurses that the oxygen support they were giving their patients, such as the CPAP (Continuous Positive Air Pressure) mask (see ‘Experiences of CPAP, mechanical ventilation and proning’), was not making a difference. Michael first received oxygen on the ward, and was then offered CPAP: “Initially they’d given me oxygen, which wasn’t working, so I was offered the CPAP, and that also didn’t work. So, I can vaguely remember the doctor coming to me and saying, “Michael, this isn’t working.”
Mechanical ventilation is a form of life support. It is not appropriate for all patients.
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.
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.
If a person is unable to breathe or take in enough oxygen on their own, they are intubated (a breathing tube is put down the patient's throat). The mechanical ventilator, also called ventilator or respirator, takes over the breathing. Being on a ventilator does not treat the underlying condition causing severe breathlessness, but it gives other treatments time to work, or to allows the body to recover on its own. Doctors will speak to a patient and their family members (if possible) if they feel mechanical ventilation is needed. They discuss what treatment or intervention they will attempt, and what this can mean in terms of survival chances (see also ‘Uncertain survival’). Paul, like many other patients, experienced delirium in ICU, which meant that he could not always determine what had really happened (see also ‘Patient experiences of mechanical ventilation’ (in ‘Experiences of Infection control measures in ICU’). He was unsure whether he had had a conversation about ventilation, or whether he had dreamt it: “I have a vague recollection of asking the consultant if I was going to die, and he paused and he suggested to me that they were going to do everything they can to keep me alive. That’s all I can remember really. It was very vague. At some points I can’t remember if I even dreamt that. It might have been a dream. I’m just unsure.”
As survival is uncertain, the moments before intubation can be extremely frightening (see also ‘Uncertain survival’). When Carl’s doctors told him he needed ventilation as his breathing got worse, he knew many people did not survive. His doctors told him things were looking good: “I kind of was told that there was a high percentage of death with it. I can’t remember how it was put to me but they said it was like 25 per cent or something like that chance, but because I was young and no underlying problems things were looking really good for me.” Paula remembered being deeply aware that ventilation meant she may not wake up.
Paula was very aware that mechanical ventilation meant that she may not wake up.
Paula was very aware that mechanical ventilation meant that she may not wake up.
And when they admitted you to Intensive Care, what thoughts did you have about how sick you were? Did you have an idea of how ill you were?
Yeah. I just kept telling them to tell my family that I loved them because I didn’t know if I was going to wake up. And they were putting me to sleep but I don’t think I was fully aware that they were going to put me right out. And my friend, who works for the Outreach team, told the consultant that they’d got to tell me that they were going to put me to sleep, so they did tell me then, that they were going to put me to sleep. And it was frightening. It was terrifying. Because I may never have woken up again. But I wouldn’t have known anything, and I know that now, I wouldn’t have known anything about it.
Some like Paul and Emma were well enough to speak to their family members themselves before they were intubated and called or texted them – often to say goodbye, just in case. Emma said: “I remember Face Timing my husband and kids to say to them... that I was being ventilated, you know, and you do say your goodbyes, because obviously you don’t know what the outcome is from that.” In other cases, family members received a phone call from the clinical team to inform them ventilation was necessary.
A doctor called Paula to tell her that her husband Victor would maybe need to be mechanically ventilated.
A doctor called Paula to tell her that her husband Victor would maybe need to be mechanically ventilated.
He was all masked up, he had…he was on oxygen, so that was on the Sunday he went in, on the Monday, they phoned me and said that they would possibly be taking him up to ICU. So, they would always pre-warn you about things that they were going to do, that was very good. And then on Tuesday, they said ICU are looking at him, they think that he will have to go, so they were warning me that they may have to put him into a coma, but they would phone me first.
Wednesday morning, they phoned me, and they said they didn’t have time, they couldn’t phone me, they didn’t have time, they had to get him into a coma, there and then. So he went, we just didn’t speak to him at all and so that was a little bit like, oh wow, when are we next going to talk to them. And up at [name local hospital], obviously they hadn’t got a training school there. So, the doctors would phone you, it could be late in the evening, I was like, hanging on every phone call.
Paul has a vague recollection of making a phone call to his wife before the doctors intubated him.
Paul has a vague recollection of making a phone call to his wife before the doctors intubated him.
I’ve a vague recollection of making a phone call to my wife from the hospital. They let me make a phone call. Now, I didn’t know at the time, but my wife and I spoke later. That was a bit strange, because it could have been my last ever phone call, and I don’t know if the nurses or doctors knew that and they were saying, we’re going to give this guy the use of a phone to phone his wife. But I think the doctors maybe spoke to my wife and said we’re going to have to put him in an induced coma to recover, because my organs were failing. So, I don’t know if they suspected that I was in a bad way, and this could be a last phone call. So, I’ve a very vague recollection of making that phone call and that was it.
Oh, just after I came off the phone to my wife, I had a vague recollection of asking the consultant if I was going to die, and he paused and he suggested to me that they were going to do everything they can to keep me alive. That’s all I can remember really. It was very vague. At some points I can’t remember if I even dreamt that. It might have been a dream. I’m just unsure. And then 30 days later I came out of a coma. But maybe in the middle…I’ve just remembered something. The middle of April, maybe 20 days later or so, they thought there was blood clots, because the kidney dialysis machine was clotting up, so they had to give me a blood thinning medication.
Dana and Elizabeth and others did not get a call beforehand, because intubation had to happen quickly, leaving no time for a phone call or text. Doctors called family members afterwards to let them know that the procedure had been done. While this was understandable from a clinical point of view as these patients needed rapid intervention, it was hard for family members at home to be without news, and to learn after the fact that a major intervention had been necessary.
Hearing their loved one needed to be ventilated was difficult for family members, particularly when they were themselves shielding, in isolation or under lockdown (see also ‘Contact between family members and clinical staff’). In such instances, people outside of their household or bubble could not be physically with them to support them through this distressing time.
Dana received a call from a doctor who told her that her husband had been mechanically ventilated.
Dana received a call from a doctor who told her that her husband had been mechanically ventilated.
And I was told that somebody would get hold of me at some point. By then it was the fourth day where I still hadn’t heard…nobody from the hospital had called me in those four days. That evening, at around six o’clock, I did get a call from the consultant who had ventilated my husband and he explained that they had tried to do the non-invasive ventilation but that my husband hadn’t tolerated it. And that they had ventilated him at around two in the morning and that they were hoping that everything would settle down and it would just be a few days and that hopefully he would show improvement. And that I guess began the process of spending every day waiting for that call. That was on…he was ventilated on the 30th of March 29/30th of March and, yeah, he remained on a ventilator and in intensive care for 56 days following that.
For those who lost a loved one to Covid in the ICU, not having been able to speak to them before ventilation added to their loss. Elizabeth did not speak to her husband before he was ventilated. This meant that the last time they had spoken had been when he was taken to hospital in the ambulance. She said: “I understood the reason why, but it’s so hard that I never spoke to him when, after the day he went into hospital that morning. I can’t think what did I say when he left. Maybe, hopefully I can pick you up. We had a couple of texts, he managed to text us, but other than that yeah, it’s just so, so hard.”
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