Experiences of Covid-19 and Intensive Care
End-of-life visits
Thousands of people have died because of the COVID-19 pandemic. Each number is a person who lost their life; each death was a loss for both loved ones and staff. On this page, you can listen to people speak about their experiences with end-of-life visits and their friends’ and family members’ death on the Intensive Care Unit (ICU).
This page covers:
- Getting a call to come into hospital
- In-person end-of-life visits
- Virtual end-of-life visits
Getting a call to come into hospital
After an initial period at the start of the pandemic when only staff were permitted in hospital, family members were allowed to visit their loved ones in the intensive care unit (ICU) when their loved one was thought to be nearing the end of their life. Being invited to come into hospital was highly emotional and difficult for family members, as it meant that their loved one was likely not to survive. Elizabeth’s husband Alexander suffered kidney failure and a bleed on the brain whilst in ICU with Covid. A nurse called to ask Elizabeth and her two children if they would come to see him. Rani received a call from a doctor to say that things were not looking good for Nahied.
Staff members from the ICU sometimes helped families make decisions about who would visit. Some family members were scared about the risks that visits to the ICU might entail for other family members who were vulnerable. Others chose not to go in because they felt it was too emotionally daunting or too risky. Deborah, initially, did not want her daughter to come to the hospital to see Shaun to protect her from being exposed to Covid. A doctor spoke to her and recommended that her daughter make the visit, as she felt Shaun may not make it.
Deborah was afraid to expose her daughter to the risk of Covid in hospital, but the consultant told her to come.
Deborah was afraid to expose her daughter to the risk of Covid in hospital, but the consultant told her to come.
And at that point, I don’t think anybody understood that Covid wasn’t just something that affected your lungs. We [started to realise that it does affect] a lot of major organs. So, when the consultant, the next day, phone us and said, look we’ve proned your husband, he’s very, very poorly, we want to turn him back onto his back within x amount of hours, we want you to come in because we really don’t think he’ll survive, at which point we went to the hospital. The consultant, the lady we’d seen the day before, ‘cause at this point my daughter was ringing, and said, I’m coming home, and I said, no you’re not, I don’t want to endanger you. And then the consultant said, well can I have your daughter’s phone number? And she spoke to her. And she told my daughter to come home, because she said, she didn’t think my husband would make it.
So, my daughter managed to get to the hospital within about 45 minutes, a family member went to pick her up.
We spoke to an ICU nurse, Melanie, whose longstanding friend, Rhod, was admitted to the ICU in the hospital where she worked. Although she did not provide care for him directly, she could visit him, which she would otherwise not have been able to. For Melanie being close to Rhod in his last days of life was a privilege, especially considering that so many people could not sit by their loved one’s bedside at that time. However, she did worry about the responsibilities and burdens that came with these visits, such as informing others who could not be with him in person. That her roles as a professional and a friend became blurred and needed delineating was confusing and difficult for her.
Melanie was at work in the hospital when a consultant colleague asked to speak to her about her friend Rhod’s deterioration.
Melanie was at work in the hospital when a consultant colleague asked to speak to her about her friend Rhod’s deterioration.
After he’d, he’d kind of given me his wishes so to speak, the very next day I was in. And it was, it was a Friday, and it was lunchtime, and I was in one of the offices just coordinating all the staff for that day, and it got to about lunchtime the consultant who was on for the unit came in and just said, oh can I talk. And I was like, yeah, yeah of course, because we have a very kind of close relationship. And he said, no I need to talk. So, I kind of knew by that look in this eyes that he was thinking that things were not really progressing in the right way. And he just said, you know, Rhod’s in trouble, I don’t know, I don’t think he’s going to survive. And I was thinking about this, thinking he’s my work colleague, he’s my friend, and how difficult that must have been for him to come in and, and say that, because he wanted to prepare me, but also, he knew I was in contact with everyone else. So, so like looking back that must have been really tough for him. But I’m so glad he did.
I then I can remember going home that night and just phoning the pastor from church saying, I don’t think Rhod’s going to make it. And that was a hard conversation because all of a sudden my worlds kind of mixed really: my professional world was going into my personal world, and, and like I was being professional but like I was still feeling it personally. So, it was a really kind of odd dynamic. But that was the right thing to do and that was what Rhod wanted.
And I spoke to his best friend, his lifelong friend, and I spoke to his sister. And she said, I want to talk to him, I want to, I want to come in. And of course, they were offered to come and visit, but his lifelong friend was shielding, as was his sister, so neither of them could come to see him, come to visit. And there was, you know, we were having some visiting. But I said, what I could do is I could take my phone to his ear, and she could talk to him through my phone. So, so that’s what we did on the Friday night. I took her, you know, virtually in with my phone and laid it by his side and she spoke to him and said what she wanted to say. And I, and I think that was really important; I think for her it was really important.
There was one particular song that he loved, and I’d go in every day and sing it. And now I, after she’d finished her call, I sang that song to him and then I went home.
Hospitals allowed a restricted number of visitors on the ward for end-of-life visits (see also ‘Staying in touch during the visitor ban’). The number of visitors allowed varied, and some NHS Trusts were more flexible than others. When the number of people wanting to visit exceeded the maximum allowed, this could lead to difficult choices for families, friends and staff. Sadia recalled that her brother said she and their mum should go to hospital, should it come to that. Donna and her daughter received a phone call from her husband’s consultant asking them to come into hospital to see him. There were more than four of them wanting to visit, and they were allowed to visit in sets of three.
Her brother stepped aside to allow Sadia and their mother to go to hospital for an end-of-life visit. Thankfully, it did not come to this.
Her brother stepped aside to allow Sadia and their mother to go to hospital for an end-of-life visit. Thankfully, it did not come to this.
I think that was one great thing about the hospital, they let us go up to the ward, and kind of hand it at the door. I think there are instances where you have to just go up to the hospital, which I can imagine would be very hard to get things to where they needed to be, so in that sense, it was kind of comforting. And, you know, we’ve got all the facilities of Facetime and things, but it was still, it was hard. And I still, one of the visions, I will never forget, was when my dad was improving, and I dropped a meal for him, sorry…there was one guy who was there, initially I thought he was someone that worked there, ‘cause he had PPE, but then I realised on the phone, he was basically being put in full PPE to go and say his goodbyes. You could see the tears and that was, I think that’s a vision…sorry….I’ll never forget, ‘cause I just thought, that could so easily have been me. And I just felt you could see the heartbreak, and then I heard him say to the nurse, I don’t think my mum wants to come, but I’m trying to tell her to. So, I was just, honestly, at least they had the chance, which was, I think ‘cause the second time around they did allow people to do that, and I think, you know, people were able to have the time that they needed.
But I remember when the hospital had spoken to us, they said two people, and even then it was like, okay. My brother was like, you and mum can go. And I think that in itself, having to make the decision, two people to go, but thankfully we didn’t have to make the decision, but when you think of all those people that were having to do that, and all those people that went with having no one, the first-time round, you just kind of think it’s so awful, it really is.
And then you put it into perspective, and you’re going into shops and you’re doing everything that you need to do, and you’re carrying on in your normal life, and there’s people that aren’t able to say goodbye to their loved ones. I think they got that really wrong.
Donna, her daughter and partner, and two stepdaughters went to hospital to say their goodbyes to Simon. They visited in threes.
Donna, her daughter and partner, and two stepdaughters went to hospital to say their goodbyes to Simon. They visited in threes.
And also, when Simon was not good on the Sunday when he passed away on the Sunday we had to go to my parents and we did a quick Facetiming of saying goodbye, because my parents are in their 80s and they were very fond of Simon. It wasn’t a great thing to do in hindsight, but they hadn’t seen him in weeks and weeks, so I wanted them to say goodbye, which wasn’t great, looking back. But we knew that the six of us could go across to the hospital and say our goodbyes, but we knew our parents couldn’t, and they had health issues and they weren’t allowed to go out, obviously.
When you say the six of you, that’s you, your daughter and his children is it?
My daughter and her partner at the time, and myself, and then my stepdaughter, my stepson, so that’s Simon’s older children, and my daughter-in-law. So, six of us went down. Because at first the hospital said how many of you, and I said four, but obviously I had my daughter-in-law and my daughter’s partner. So, we went down and thought well, we’ll just go to the visitor’s room and if they don’t let us in, they don’t let us in, but if they do, that’s a bonus. At least we’re all in the visitor’s room. We can talk to the consultant about any options, which is what the family did. They talked about the options and then we said could we go in, and the consultant at the time said yes, in threes, so that’s what we did. So, my stepdaughter, stepson and daughter-in-law went in first for quite a while. We had quite a while. We were very lucky. They came out after, not an hour, but less. And then myself and Sophie, my daughter, and her partner went in.
In person end-of-life visits
For many who went into hospital for an end-of-life visit, there was a mixture of difficult emotions. Most saw their loved one in person for the first time in weeks. Seeing a loved one in ICU is upsetting (see also Seeing the patient in ICU for the first time), particularly when they are close to death. Alisha felt happy that she was able to visit to her dying father in ICU, although at the same time, she found it “scary”: her father’s body had changed in such a way that he no longer looked like himself.
For most family members, this was the first time that they met staff members in-person. The doctors and nurses helped them prepare for what they would see. While many were comforted to see that staff had tried everything they could, hearing from doctors about what would happen next could be very distressing.
The consultant told Deborah and her two children that if Shaun would not respond well to being turned around, they would let him go quietly.
The consultant told Deborah and her two children that if Shaun would not respond well to being turned around, they would let him go quietly.
So, my daughter managed to get to the hospital within about 45 minutes, a family member went to pick her up. And then we were all in the family room, and she said that she wanted us to go in and see my husband, just to say goodbye, at which point he was still proned at this point, they hadn’t flipped him yet. And going in was just, she warned us what we would see, that we’d see lots of beeping machines, and that my husband looked slightly puffed up around his face, but when we were there, they would explain all the machines to us, because we didn’t realise, but he had been put on dialysis for his kidneys. He had also had needles put into his neck for noradrenaline, which I knew what it was, because when my husband had sepsis the year before, and he was put in Intensive Care, they had done exactly the same thing, they’d put in a needle, that goes right the way, I think, down to near the heart, to put in noradrenaline, to make sure that the heart is supported, if the blood pressure drops too much. So, we knew what that was.
And so, when we went in to see him, he was so cold to the touch. The tips of his fingers were blue, so you could feel his circulation. And I’ve never touched a dead body, but it felt that the life had kind of already gone. And the same nurse, [name], was looking after my husband that day, and he actually gave, we were all in full PPE, and he actually gave me a hug and said, I’ll be looking after him, I’ll make sure he gets through this. He was amazing actually. And we all kind of, it sounds a bit strange, but we all kind of, do you know one potato, two potato? We all kind of put our hands on top of his on his back, and said to him, come on, you’re going to pull through this, this is, you’re strong. ‘Cause, you know, he’s quite a fit man, he liked to keep fit. I think he was also at that age, he was 54, where some men, you know what they’re like, might have a mid-life crisis, so he started to exercise a lot. And then I think, because of the cancer the year before, he always made sure that he had exercise and felt good. That was important to him.
And then we went back into the waiting room, and the ICU consultant came and sat and talked to us, and she said, look, if my husband, when they turn him back on his back, he doesn’t respond well, I think we’re just going to let him go quietly. So, I kind of said, what do you mean, let him go quietly? She said, well, you know, maybe no intervention, it wouldn’t be fair, because of the amount of, the way the body had been so affected by the Covid. And at that point my son was very, very upset and angry and said, well, if you mean you’re not going to resuscitate him, show me how to do it, and I’ll do it for you. And at which point, I think, the ICU consultant realised that we were saying, resuscitate him if it got to that point, which thank God, it didn’t, looking back in hindsight. And then we just went home, and we were just praying, we’re not religious people, but, you know, we were just asking all our friends and family just to think about him, send him positive thoughts.
The people we interviewed described these end-of-life visits as surreal, daunting and traumatic. These feelings were enhanced by having to wear personal protective equipment (PPE) that included a surgical face mask, gloves and an apron, and the PPE limited touch and created a barrier between them and their loved one.
Some chose to be with their loved one when they were taken off life support; others preferred not to be. Some were not offered the choice and waited outside.
Donna, her daughter and her partner saw Simon before and after the ventilator was stopped. Wearing PPE made the encounter more difficult.
Donna, her daughter and her partner saw Simon before and after the ventilator was stopped. Wearing PPE made the encounter more difficult.
Obviously, it took a while to get the PPE up, and we were allowed to go in. Then we came out and my daughter and I went back in after Simon had passed because they had to turn all the machinery off. We had said how long will it take, and I think it was mentioned two hours, but I don’t know, it was a bit hazy. But it didn’t take very long, it was only about five minutes. It was quite quick. They’d lowered everything, I think. Then myself and my daughter, Sophie, we PPE’d up again and went back in. So, we were with him at, not the end, but after he’d passed away, just spent a bit of time with him. Because there was only person, which was Simon, on the ward, and one nurse, in a way I suppose we were quite lucky because it was quite private, and it was the end of a day and there was nobody else on that ward. So, we did have the privacy as well, which we were grateful for. There wasn’t lots of patients around.
So, when they made that decision to turn off the machinery you were expecting it to take longer. So, you weren’t expecting to be able to go back in then?
We said could we go back in, and the nurses, I think they had to deal with some things, and I said, well, Sophie and I would like to go back in, because the rest of the family had gone by then. Sophie and I would like to go back in, and they had said that was fine. Obviously, the PPE was off, we had to put the PPE back on. I think Sophie thought we might go and sit by Simon’s bed as the machines were going, so we’d be with him, but we didn’t get that chance. I’m not quite sure why. It’s a bit hazy. IT was obviously quite quick, and also we’d taken the PPE off and we had to put the PPE back on and then go back in. So, I’m not sure. But that was fine. It was probably better that way in a way than perhaps being there at the time, looking back. It’s difficult to say really. So, it was very daunting, as you can imagine, because you’re visiting somebody in PPE, not really meant to hold their hand, you’ve got all the whole lot on and you’re sitting by somebody’s bedside in full PPE, and that’s quite difficult as well really. That was quite difficult for us all.
Several of the parents who were present when life support was withdrawn alongside their adult children, felt they had to stay strong. Elizabeth wished that she had had some time with her husband alone to be able to say goodbye to him.
Some patients died whilst on full life support, such as Melanie’s friend Rhod. Melanie was able to sing Rhod songs as his family members were too vulnerable to visit, and sit with him when he died.
Melanie sang to her friend Rhod when he was dying. Only later did she realise her colleagues in ICU had been listening and the impact of her grief on them.
Melanie sang to her friend Rhod when he was dying. Only later did she realise her colleagues in ICU had been listening and the impact of her grief on them.
I spoke to the consultant because they’d changed shifts, and I said, call, call me; don’t let him die on his own, call me and I’ll come back in. But I was still doing all my shifts as well, so it was like I don’t know how this is going to work but I’ll just manage it somehow. And I can remember going home and waiting for the call. And then I did get a call and the consultant said, there’s one more thing I think we can try. There was a new drug, tocil that had come out and he said, I think we can try this one more thing. Which they did do. But when I came in in the morning, I saw that his oxygen levels were still at 100 per cent and he was not making any improvements with the saturation, and actually visibly I could see that he was dying in front of us.
So, we had, like we had a morning handover where we would allocate where patients were going to be admitted to and where they were being discharged and where there were gaps. And we had that morning meeting and one of the nurses in charge of the pod, you know, I said that’s my friend and I want to be there and, you know, I’ve got consent to be there, she was quite like, well not if I don’t think so, not if I don’t think you should be there you won’t be there. I was like, sorry, like what, what, what, why do you think that you could possibly stop me. That really affected me, and I thought like I might be denied to see him. And I, I’ve never really been able to revisit that because it’s been a little bit too painful. But the same consultant that was on the Friday that spoke to me said, you know, we’re going to have handover medically, come and join us, come and listen to what our decisions are, be, be involved in that. I really valued that. I really valued sitting in the room. Again, it was a bit of a funny context, but, but to be able to hear it with a professional head and then know that they had done absolutely everything possible it was just so reassuring. And actually, you know, it, it was like an hour or so later that I was by his side.
And they didn’t need to withdraw treatment at all. He died on full life support. And I was there beforehand, and I was able to go in. And an agency nurse was looking after him, which again I think I was a little bit disappointed to begin with because I wanted it to be one of our own. But, you know, he was a lovely, lovely agency nurse and I said, I just need some time with him before. So, I went and again, you know, had full PPE on and everything, and I sang this song. And I hadn’t realised, because like the curtains were around and everyone was doing their busyness with their other patients, and I hadn’t realised till later, but they all stopped what they were doing and just listened. I probably wouldn’t have sung if I’d had known that. But like they just stopped, and they were all just silent, and I thought that was such a respectful thing to do. For them seeing me, I guess, because I was one of the leaders here, and you always put on a brave face and say, you know, we’ve got this, we can manage this, we’re in this together. But for them to witness me being so broken I think that, on top of everything else they were seeing, that was another layer of like trauma. And I hadn’t really appreciated that. I just did the thing I thought was right. [Crying] But to know that these people that you were trying to protect and trying to help, that you kind of I guess gave them more to deal with. And that was really tough.
Although Melanie had already seen many patients die with Covid as part of her job, when Rhod died, the pain was personal. Melanie described her friend Rhod as “one of the many, but he was a special one of the many, because of those connections really.” Witnessing Melanie’s distress was hard on her colleagues and added to everything else that was going on in the ICU.
After death, family members often had the chance to spend some time with their loved one, without the machinery and without the time pressure.
Donna found it particularly difficult that she and her daughter were not able to touch or hold her husband Simon in his last moments. She found it difficult to know when to leave his side.
Donna found the end-of-life visit to her husband Simon traumatic, both for her and her daughter.
Donna found the end-of-life visit to her husband Simon traumatic, both for her and her daughter.
So, when Simon did pass away how do you look back at that moment?
Quite traumatic, because it’s like a race against time. So, when he did pass away, when my daughter, Sophie, and I went back in, it’s very traumatic. It was traumatic, and it was traumatic for Sophie as well. Because of all the tubes and things and then suddenly those aren’t there but you’re still in the hospital setting in ITU, it’s really scary. And you’re not in a room by yourself, even though we were on the ward by ourselves, because there was nobody else there, it’s quite traumatic, and especially with all the PPE. You can’t cuddle anybody or cuddle them you’re not really meant to. And I feel for the staff, because one particular member of staff was really emotional. She’d just come onto shift, she’d been there a lot of years, was quite high up, and she was quite emotional, she had to apologise to us, which was a shame, apologise for being emotional. I thought that’s awful, isn’t it? I said, don’t apologise. This particular person had looked after him on a ward, taken him down to the ward, and there they were having to try and put a brave face on because they had to.
So, there were we, we were really emotional, it was late at night, it was cold, winter, and there we were on the ward. We didn’t really know when to leave. We stayed for a while and then I said to Sophie, we’re going to go now. That’s when we saw him in the chapel of rest. I did, and I did persuade my daughter to and that was still a bit traumatic. Because I thought that might be easier for us to see him in the chapel of rest because we’d seen Simon on the ward, and it was all a lot of trauma. But I think she still felt trauma with it all because it’s her dad. Yeah, it’s not very nice, obviously. And you’re not in a room by yourself. Even though there wasn’t a lot of people around, thank goodness. But if there had have been that would have been really difficult. Because my friend when her husband died six days later, I think there were people on the ward and she just had curtains round, not that anyone could do anything about that, but it’s not as private is it? But everybody made it really stress free. They were very lovely.
Several people found it helpful to speak to the nurses after their loved one had died. The hardest thing for Elizabeth, who has provided palliative and end-of-life care in the community, continued to be that she was unable to give this care to her husband: “I haven’t done any intensive care but I’ve worked in the community, I’ve done a lot of palliative end-of-life and that is something that I’ve always felt incredibly privileged. And I know it’s a different scenario but I struggled, really struggled, with the fact that what I’d given to other people I couldn’t give to my husband. I couldn’t be there for him.”
People were advised that, after returning home, they wash their clothes immediately, and in some cases, self-isolate for a number of days. They were also asked to take their loved one’s belongings on the day, rather than later. The hospital preferred it this way to minimise the contact between staff and family members. But, for family members, this was often difficult.
To Donna, taking the belongings after her husband’s death felt very final. Her daughter was distressed seeing her mother sign papers for receiving them.
To Donna, taking the belongings after her husband’s death felt very final. Her daughter was distressed seeing her mother sign papers for receiving them.
I think the only thing is, because of the Covid I was asked to take Simon’s belongings, and my daughter was like nearly hysterical, what are you signing, what are you signing? That was when he was alive. I said, I’m only signing to take the belongings because you don’t want people to keep coming back to a Covid ward to get belongings, and I understood that, but she was a little bit, Mum, what you signing? I said, I’m only signing for belongings, because they won’t want us…
So, you’re actually leaving a hospital after Simon had passed away with two bags of belongings, walking down a corridor. Quite hard, I think. And then you were told you weren’t allowed to open the belongings for I think…first of all it was 72 hours, then it was ten days. Well, we did leave them the ten days, to be fair, so we didn’t actually touch them. We brought them into the house, but we didn’t touch them for ten days. That was a bit like here’s the belongings…because they don’t want you back in. I understand why. But quite hard when someone’s passed away to go back in.
What were these belongings?
Well, belongings that he’d taken into hospital, and obviously his glasses, wallet, personal…
Phone?
Phone, iPad, personal things, two bags. Whereas normally you’d go and get them I think downstairs at another department, but obviously with the Covid I can understand they don’t want you in and out. It was very final, because you’re mourning, and you’re really upset and you’re going and then you’ve got these belongings as well to take. It's just very daunting.
Virtual end-of-life visits
Some people were not able to visit in person. For instance, if they tested positive for Covid themselves and were self-isolating, or if they were shielding because they themselves were vulnerable. Some people lived too far away to visit when time was short at the end and there were often restrictions on travel.
Sometimes, deterioration happened so quickly that the only way to be with a loved one was via video call. When the doctor called Alisha and her mother, Rita, to say that, if they could, then it was time for them to come see Arjun (their father and husband), Alisha was still testing positive for Covid. So, Rita went to the hospital alone, and video called Alisha from the hospital. As soon as Alisha tested negative, she was able to visit.
When it was not possible to visit a loved one in ICU, people could contact loved ones through video or telephone calls, and, sometimes, letters. Health care teams supported all these ways of keeping in touch through iPads and mobile telephones.
Some family members called other family members when they were at the bedside of their loved one. While video calls were never a substitute for being present, in-person, but they could be both helpful and shocking for those family/friends on the other end of the call, particularly, if they hadn’t seen them for a long time.
When Arjun passed away, neither Alisha nor her mother could be in the hospital. They spent hours with him via video call before he died and afterwards.
Enabling family members to video call their loved one when they were dying was also difficult for staff who were present with the patient and witnessed these emotional moments. That so many family members were unable to be with their loved ones at/near death, weighed heavily on family members, friends and staff.
In her role as an intensive care nurse, Melanie advocated for more family visits wherever possible within the circumstances.
In her role as an intensive care nurse, Melanie advocated for more family visits wherever possible within the circumstances.
Can I ask one more professional question? So how did you see that patients were more delirious when family is absent? Does that make a difference to the degree to which patients are delirious?
I think the length of delirium and, for sure, and was more intense. And lasted longer. It's hard because it Covid is so complex and. Put that and also covered patients were with us for so much longer. I'm in trajectory was four to six weeks, whereas in an average length of stay is less than you know four to 10 days you know and so clearly they were going to get delirious just by default. But the severity and the duration. There's much, much more intense. So, when families could come in, you could see a change in the patient.
I was very much a champion of enabling families to visit because, they in themselves are therapy for patients. And when you're intubated, ventilated, sedated your, your mind is trying to make sense of what is going on and you don't know who you are, where you are. Even if your existing, and you know hearing people, familiar voices of those that you love kind of bring you back to reality and you know many times people have said as part of my role as following patients up after intensive care, many will say that they were drawn to a bright light. But a family member's voice drew them back and it made me think how many patients didn't ever hear a voice to draw them back. How many and so I was very. Wherever possible, we would try to get visitors to come before intubation and obviously end of life. But when patients were delirious like we needed families there to kind of bring them back to some degree of you know connection and but that that was a challenge throughout Covid.
Like how his lifelong friend and his sister were just relying on, not just, but were relying on phone calls. And we did do virtual visiting and…but it wasn’t the same as that human contact. For Rhod that physical contact was really important. And you didn’t even need to say anything; just your presence being next to someone that you love is enough. So, yeah that, that, that weighs heavy on my heart that so many families were not allowed to come in to see their loved ones.
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