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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.

 

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.

 

Elizabeth had been expecting the call to come see her husband in hospital, but it still came as a shock.

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Elizabeth had been expecting the call to come see her husband in hospital, but it still came as a shock.

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How did you find communication with the doctors? What did that look like?

It, I found it okay. Obviously, they were telling me not good news, so that is the different, a different scenario. Yes, they did answer any questions and everything I wanted. Sometimes you don’t, you don’t always think what you want to ask. You tend to be a bit, I don’t know, it’s really hard. But yes, they were…they did give me information when they spoke to me, yes. Other than the night when I said, let me know, and she goes, no I can’t tell you. Obviously, she was telling me the worst news and I could understand why she didn’t want to tell me, but I knew. I was invited to the unit so I knew that I was going in to say goodbye to my husband, because we wouldn’t have been invited in otherwise.

They didn’t tell you over the phone that they thought that it was end of life?

They did tell me what the, what the scan had shown. But I knew, the nurse had said a couple of things, which I’d sort of picked… I wondered was she telling me this because she knew I was a nurse and that I would pick up like that his pupils weren’t react…weren’t reacting; so, I knew there was something wrong with his brain. But I can understand why she didn’t want to tell me over the phone. But you knew, you knew because, as I say, you wouldn’t have been invited in otherwise.

And did that come as a shock to you or was it something you were expecting to some degree?

I’d always there was always part of me that I had to protect myself. I knew, I think I remember speaking to the care team, if I’m lucky enough for him to come home. There was always part of me that had to protect myself.

But I believe that weekend, because things had started to change a little bit breathing wise, things had started, he’d had maybe one better day, and I think on the Sunday as well they were saying he’d maybe started to breathe a little bit more. As I say I’m not an intensive care nurse, but on the ventilator, he’d been showing signs, managing to take his own breaths a bit, and I think I let myself have too much hope that day. Even though in the morning they told me he’d been bleeding from his signs, so I was very unsettled in the morning. But then they said he’s breathing, and I allowed myself too much hope. And I do feel guilty that I allowed myself sort of yeah hope that he may come out.

It’s really hard to explain because you’ve always got to have to have hope, but you have to protect yourself and think it may not happen. And that Sunday was a bit of a shock. If it had been a phone call two or three days beforehand it probably wouldn’t have been such a shock, but that Sunday was a shock, yeah, yeah.

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.

Age at interview: 54
Sex: Female
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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.

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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.

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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.

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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.

 

Alisha was asked to come to the hospital to see her father. Her mother came with her.

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Alisha was asked to come to the hospital to see her father. Her mother came with her.

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I was really happy that I got to see my dad, because I saw him on 1 February, and he passed away on 2 February. Some people say oh, he was waiting for you to come, hold his hand and talk to him. I hope that’s true, because if it is then I’d be so happy. Until this day it seems like a dream.

To be honest with you, when I saw him, I couldn’t really recognise him. I just thought my dad has changed so much in the past three weeks or one month, I can’t recognise him. Obviously, his eyes are closed and he’s poorly, but I couldn’t tell that this was my dad. Holding his hand was just scary. They said that his hands were so pulpy because he’s boated because everything is just staying inside now, nothing it’s coming out. He wouldn’t excrete, urinate, digest food, and all of that is just not coming out, it’s just staying inside the body and that’s why. Water needs to go somewhere so it starts to go into the entire body. When I was holding his hand, I just felt so scared. It’s a very odd feeling. It’s very difficult to explain that feeling. We still said it’s going to be okay. It was like everything you could tell me wrong I was still like it’s okay, doesn’t matter, it’s going to be fine.

But I think this is very natural. When people are telling you he’s going to die you don’t want to accept it and you’ll do everything to tell the other person that they’re wrong. But we realised at that point when we went into the ICU unit that everyone is working so hard. Obviously, we will be a bit bitter, we’ll be a bit cruel because we’re losing our loved one at such a young age and it’s not fair and that’s why we’re so crude about it. But when you see how hard the staff are working and how much they’re doing you really have a different perspective and you think well, okay, they gave him every chance. It’s got to be affecting him really bad for him to die now because there’s nurses always staring at him, always looking at him, always checking his levels, always doing this, doing that. So, we never felt like he was in the wrong hands. He was always in the right hands. But I guess the problem is just that we feel unlucky. That’s the biggest thing. We just feel like this is not fair on him.

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.

Age at interview: 54
Sex: Female
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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.

 

Elizabeth and her son chose to be present when Alexander was extubated. They stood behind a screen a form of infection control and could spend some time with him immediately afterwards.

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Elizabeth and her son chose to be present when Alexander was extubated. They stood behind a screen a form of infection control and could spend some time with him immediately afterwards.

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And when you say there was a screen can you explain to me what that looked like?

When he was extubated, because it’s an aerosol generating process, and obviously you had to have the proper masks then. We just stood in a little area. It was only for a minute until they took the tube out and then we could go straightaway. We just couldn’t be there as the tube first came out.

So, you could touch him?

I could touch him, but we had gloves.

Of course.

A double glove thing. And he didn’t look – I’m used to seeing people who are dying – he didn’t look like my husband. He just did not look like…I do wonder where was I, that night, where was I, if you understand what I mean. Was it my professional head? Was it my…I don’t know. I think it was probably shock.

 

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.

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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.

 

Elizabeth would have liked a few minutes with Alexander alone before he was extubated.

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Elizabeth would have liked a few minutes with Alexander alone before he was extubated.

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And I do feel like I didn’t say goodbye to him properly. I do feel that, and that was another thing that I struggled with that I didn’t say goodbye. Maybe because the two children were there.

I can imagine that’s an impossible situation to be in, right?

Yes it is.

Is this what you meant when you said you’re also a mother so you’re trying to protect them?

Yes, I am a protector with any of the family, I think I am. It’s probably my role maybe as a nurse, I don’t know; we protect. And did I feel like I could say what I really wanted with my daughter and my son were sat there? Probably not, probably not. I mean, when they left, I did have a few minutes on my own, but obviously he had died by then.

Maybe really is it because I see other families have time to say goodbye? That is maybe the reason: they’ve had time to say goodbye. Whether it’s any easier I don’t know, do not know, I don’t know.

Is there any way you wish you had maybe shaped it differently? Would you have liked some time by yourself with him?

Yes, I think because they asked us “did we went to be there” when he was extubated, and I said yes and my son said yes, and my daughter didn’t so she stopped behind. Obviously, we had to be behind a screen because it’s an aerosol generating. But I wish I had gone in first on my own and had maybe ten, five, ten minutes with him to say what I wanted to say. But then I would I have said what I wanted to say? I don’t know, I don’t know, don’t know. But yes, there is still that that I never said goodbye.

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.

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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.

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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.

 

In the days after Alexander’s death, what had happened had not yet fully sunk in. Elizabeth could not unpack Alexander’s belongings that she had taken from hospital.

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In the days after Alexander’s death, what had happened had not yet fully sunk in. Elizabeth could not unpack Alexander’s belongings that she had taken from hospital.

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What did that look like when you went to the hospital and then he then passed away after being extubated? What happened after that?

What happened after that, as I say I stopped about five or ten minutes later and then I went out, and then I had to do the phone calls, I phone called them. I did speak to the nurses as well. I remember saying I think I’m going to need to know a bit more information, I think I’m going to need to know a bit, to know a bit more at that time.

I think I’ve always known I needed to know, but that time I just had to…it was just surreal going back home in the car. I don’t think it totally clicked. I phoned a couple of people. I remember getting up that next morning and maybe friends who were…just writing on the phone sending Alexander died last night, just going through them all and just, just saying that. I was just tired on Monday, exhausted on Monday. And then Tuesday I had a bit more normality. I just felt, felt a weight had been lifted off me, obviously because the full reality of widowhood hadn’t really hit me. But I wasn’t waiting for those phone calls anymore; I knew the outcome; I knew what the answer was.

It was going home afterwards and having to have a shower and putting your clothes in the washing machine. And obviously I couldn’t touch his belongings for 72 hours because at that time they had to leave, so what I brought back from the hospital. To be honest I didn’t unpack them for about five weeks anyway. I sorted his phone out because I just wanted to disable the thing. The reason was because he had a reading book in, and he never got to finish the reading book. That was the one thing that put me off from going through his belongings. It’s strange, it’s never been the bigger things with me; it’s the little things.

 

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.

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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.

 

Alisha still tested positive for Covid when the doctors asked her and her mother to come to the hospital, so her mother went alone and video called her.

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Alisha still tested positive for Covid when the doctors asked her and her mother to come to the hospital, so her mother went alone and video called her.

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They started to tell us he’s dying, he’s dying. They started to tell us that quite early, to be honest, in his ICU stay. We just kept saying why are you saying he’s going to die? He’s not going to die. You need to be positive, because he’s in your care, he’ll be fine. He’s got no reason to die. He’s a completely healthy person, he’s not going to die. But every time they would call us for an update they would tell us he’s a dying man, you need to see him.

Once we got to the point where we were so scared. We’re trying to be positive but at the same time we’re aware that we have to be practical. What if he does pass away? What’s going to happen? I was still positive with Covid, so they didn’t let me come and visit my dad in hospital, but they let my mum visit because she wasn’t positive. So, she went to visit him, I think it was one of the Sundays, because they were just telling us he’s not well. She definitely wanted to see him, and luckily, they gave us the opportunity. A lot of people didn’t get to see their loved ones in the hospital, so at least my mum felt very lucky that at least she’s able to go and be with him, even if it’s for a little while.

I think it’s such a difficult one because for my mum to be there on her own, when I was watching her, it was such a different experience. Three weeks ago, we were all so happy, we were all so normal. My dad was completely normal. And now she’s here sitting with him because we’re being told he’s going to die, and I’m watching my mum talk to my dad and try to revive him in some way that medicine can’t. It was just such an unreal experience, and I just felt so bad. I’m an only child, I don’t have siblings, so for me my dad was more like a brother, more like a friend.

It’s just a very different and unique relationship, and I couldn’t believe that I’m being told that he’s dying. People go through that at young ages, and I never thought that would be me, I never thought that would be my mum. It was just very unreal.

But then even though they said that he’s dying, mum went to see him. I spoke to him over the video call and tried to give him good vibes and stuff like that. But the doctor said he could die any minute. He might not even be alive for the next couple of hours, and that’s why we’re telling you to come and 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.

 

During the end-of-life visit, Donna “Facetimed” her parents, who were shielding, to enable them to say goodbye to her husband.

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During the end-of-life visit, Donna “Facetimed” her parents, who were shielding, to enable them to say goodbye to her husband.

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You said previously it wasn’t a good idea to let your parents say goodbye at that time. What made you say that?

Because we took our phone into my parents before we went over to the hospital, because we thought if we go to the hospital first, we can’t then mix with them because of the Covid coming out. So, we literally went in, saw them, a quick goodbye. So, we Facetimed with the staff, it was literally a two-minute Facetime, but because they hadn’t seen him and they’re in their 80s I think it was a bit of a shock, even though they’re both medical. My mum’s a nurse, my dad worked in a couple of local hospitals for a lot of years, but I think they found it difficult. Because it’s a loved one it’s obviously ten times worse than just somebody else, isn’t it? But I had to think of a way of them saying goodbye so that he could possibly hear. But it was quite upsetting, in hindsight.

Would you not have done that if you had known how upsetting it would be?

Possibly not, or I possibly should have said it is quite daunting, because they hadn’t seen him for such a long time. I think their last memories were of him a few months ago, obviously because we couldn’t go because of Covid … Funnily enough at Christmas they said don’t come, we won’t be in your bubble or whatever, because obviously they’re older, they’ve got health issues, so we think it’s best if you don’t come at Christmas, so we didn’t, obviously. So, they hadn’t seen him for a long time, so I think it was even more daunting. Their last memories were him back in about September, October, and this by now was February, so, yeah, probably wouldn’t do that again really.

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.

 

One day after Rita and Alisha had visited Arjun in ICU, he died whilst his family member spoke to him via a videocall.

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One day after Rita and Alisha had visited Arjun in ICU, he died whilst his family member spoke to him via a videocall.

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So, we got woken up at around 12 in the afternoon. Actually, no, sorry, it was 11AM in the morning, and the doctor said his oxygen is fluctuating a lot, this oxygen saturation that is, fluctuating quite a lot, it’s dropping to 60 per cent even though he’s on 100 per cent oxygen. Sometimes it goes back up to 80. It’s dropping really low. The lowest it’s been is 40 per cent, and that’s critical. Then they started saying that beside his oxygen his blood pressure is fluctuating a lot, and that’s very scary, because if his blood pressure is fluctuating that means that his heart was starting to get affected, and that’s when they said that we really don’t think that he’s going to make it and we would advise you to join on video call ASAP because he might not make it another five minutes, he might not even be there. That’s when me and my mum rushed downstairs and switched on the video and the hospital connected us. I can’t remember the timings exactly, but we spoke to them, and we got connected and we spoke to my dad, tried to say what’s going on, you’re so strong, you need to get better. We were just hoping that he could hear us.

That hope was based on one of my friends whose dad was also in the ICU and she said that her dad had told her that he could actually hear what she was saying when he was sedated. So, we thought, okay, someone is able to hear, so that means that maybe whatever we’re telling my dad he will be able to hear us. That was our hope. We just gave him everything we could. “You’re going to be fine.” Every single positive, every motivational thing we could do. That was for about four hours constantly talking and talking and talking. We were talking to my grandma who lives in India and also trying to get her to give some motivational speech to my dad by connecting them. Anyone. Not just me and my mum, but also trying to get the close people to him to speak to him, maybe he would hear their voice and just get better and start showing some recovery. During that four hour period, because the blood pressure was dropping and going back up and dropping, and at one point it was going up slowly. At that point we thought oh, see, you know what I mean, his blood pressure is starting to improve, and if it’s improving that’s a good sign. Even at that point we still kept saying blood pressure’s going back up, that’s a good thing.

We got to a point where his blood pressure was actually 40 by 20, and that’s very critical. His heart is unable to sustain things.

It got to a point where the nurse was standing next to my dad watching the monitor, and they deliberately moved the monitor screen away from our camera because they know that I always look at the monitor.

But then it got a point where the nurse just stared at us, and we looked at the nurse and she put her fingers on his pulse and she was saying that I can feel a very faint pulse. Me and my mum were just quite shocked. We didn’t know what to say. Then she was holding his hand and stroking his head just so that he feels some sort of physical touch, because if he really is passing away, we don’t want him to feel like he’s on his own or no one’s with him. That’s something that I really appreciated. They could have very easily just said oh, yeah, he’s just dying, and not do anything about it. But if I was there or if my mum was there that’s what we would be doing, we’d be holding his hand and just being with him, and that’s what they did for us. Then she just said now I can’t feel a pulse, and unfortunately, he’s not alive anymore. I just couldn’t believe it when they said that he passed away.

I just told the nurse, can you please just check again because it might just be you’re not feeling it properly, please check again. What does it say on the monitor? I said, what’s his oxygen saturation, what’s his blood pressure? Then that’s when they said that there’s no information coming up on the monitor. That’s when I had no words, because if there’s nothing on the monitor that means there’s nothing going on in his body and he had flat lined. So that’s when I just kept saying, I think about three times to the nurse please check again, just check again and check again. Eventually she said I can’t feel anything now. She kept apologising, which she shouldn’t have because it’s not her fault. At that point me and my mum still kept talking to my dad as if he was alive even although we knew that he’s not alive anymore. We still just kept speaking and we just ended up crying a lot. Then we had to break the news to the whole family, and that was very difficult because nobody ever expected that. Nobody ever expected that.

It was unbelievably difficult to tell people my dad’s not alive anymore. Even for my mum. We were just staring at him on the video. It just looks like he’s sleeping. Even though he passed away, because he was still on the ventilator his chest was still going up and down and I was just telling the nurse he’s alive, he’s breathing. And the nurse said no, it’s because of the ventilator, it will keep expanding his lungs, and it looks like he’s breathing but he’s not. Then they said to us would we like to carry on talking to him and have some personal time before they take him to the mortuary I think it’s called. Yeah, to the mortuary I think. We said yes, and they didn’t disturb us. They actually let us speak to him for about three more hours. I was talking to him like he could hear me. It didn’t seem like he’s gone. Literally one minute he’s alive and one minute he’s not. It just didn’t seem real.

They said to us would you like to talk to him while he’s still got all the equipment on him or would you like us to call you back in half an hour and we’ll shave his beard, make him look presentable, take everything off him, and then you can speak to him. My mum and me decided that we would like that, for him to be groomed a little bit and then speak to him. Then they called us back and they had shaved his beard off and everything, and all the equipment was off and he was just there. Again, just didn’t seem like he was gone. Just talking and talking. Again, sometimes we were just talking to him as if we were trying to convince him to come back. It’s just such a natural thing to do because you don’t think he’s not there. It’s just a very surreal experience and something I would never wish anyone to feel. It’s one of those brutal realities of life. But that was how it went. So, we were just woken up and then spoke to him, and then he passed away, and we carried on speaking to him.

But very luckily we actually managed to see him before he was cremated. So, I actually got to touch him and hold him, and it felt very different. Because obviously you can imagine because of how bad Covid was at that time there was huge waiting lists for funerals, so we didn’t actually get a funeral. The funeral didn’t happen until… ten days later, so he had to be put in a freezer. When he was taken to the funeral directors’ place and we got to see him for a last time, touch him, because he was given all hygiene treatment and all of that, he was so different. He didn’t look the same.

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.

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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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