A-Z

Experiences of Covid-19 and Intensive Care

Contact between partners/families and clinical staff

When family members could not visit, staying up to date with how their loved ones were doing became the most important daily activity. Because patients in the intensive care unit (ICU) were very unwell or sedated, they were often unable to use their phones (see also ‘Admission to the ward-when a loved one no longer responds’). This meant that family members depended on doctors and nurses to update and share information with them.

Below you can listen to family members as they talk about:

  • Organising communication between home and hospital
  • Receiving calls from the ICU
  • Calling the hospital
  • Family liaison/family communication team

Organising communication between home and hospital

For hospital wards and ICUs across the NHS, the COVID-19 pandemic required a radical shift away from the standard ways of communicating with family members, and presented significant challenges. Staff had to change the ways they communicated with family members.

 

What is the role of family members on the intensive care unit? How have relationships between staff in ICU and family members chanced due to Covid19?

What is the role of family members on the intensive care unit? How have relationships between staff in ICU and family members chanced due to Covid19?

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Most doctors have a relationship directly with their patient and the patient is the person they get to know and the patient is the human being that they are trying to help in whatever way they can. In intensive care when your patient is unconscious, you for many weeks sometimes don't ever get to properly meet them and understand who they are and their personality, their character. You know, whether they're fun or whether they're serious or whatever it might be. And so, the way in which we get to understand the patient is through getting to understand their loved ones, their friends, their family and so on. So, we are very used in intensive care before the pandemic to communicating an awful lot with family, whether it be when we're going around on our ward around and it's maybe in the evening and the family are in visiting patients and we say hello at that point and often answer questions. Or maybe it's arranging a particular meeting to discuss the challenges we've got with a particular patient and how best we solve them, how we understand what that patient's wishes might be. Really so few patients write down what their wishes are before they become ill that we’re critically dependent on family to explain all of that to us. And obviously those very difficult conversations are much better had in person, and we've always done it that way, and we spend a huge amount of time with our patients’ families. To have that taken away from us was actually really difficult. Because it was almost like having the patient's personality taken away from us. That human being in the bed. We didn't really know them like we used to know them and all of that is very hard. And certainly, you know, I mean, I can remember a particular case of having to stand by someone's bed and phone their wife to tell them they were dying. It's not easy. It's not easy because they can't see them, they can't understand, they can't visualise or picture - if that's somebody who's never visited an intensive care unit before, they're not going to be able to truly picture their loved one and understand why they're so ill and they're just dependent on our word and our professionalism. And, you know, so those two things together, the lack of support as a doctor or a nurse from the family and the extra burden of them relying on us together is very, very hard, and I'd say that was the hardest thing. Certainly, for me the hardest thing in the pandemic.

And how has that changed over time if it has?  

Well, very early on, I mean obviously, so many parts of society would shut completely shut and hospitals were completely shut and hospitals aren't designed to be closed places. They're designed to be places for people to come and visit and come and go. And you know that that's the normal for hospitals and so closing them and making them such closed spaces in the first wave was big shock to us, was very difficult. We didn't really have any technological response to that. It may seem absurd, but a lot of hospitals weren't even equipped with Wi-Fi, so, you know, using tablet computers to make Zoom calls or Teams calls or whatever it might be was not something that we ever did before, and actually probably most of society wasn't that used to online video calls either. We're all completely up to speed with it now. Pretty much everybody, but before the pandemic, nobody really did that, and we certainly didn't do that with patients. And it took us quite a while to set up those systems so that we could have in many cases we have medical students coming around with tablet computers and giving them to patients so that they could speak to their family or their family could see them if they weren't able to speak, so that we could say hello so that the family could see the doctors and the nurses looking after their relatives, their loved ones. And more and more over time actually using that as a medium to communicate directly with the family ourselves. But there were so many things to do. There were so many systems to set up and scale up, and that was one of the slower ones. And I'd say that was the one of the ones that we perhaps underestimated at the beginning. The impact it would have and the need and the importance of that need. I think by the second wave most hospitals were super-efficient: We had communication hubs. We put special messages in the notes in in the Covid ICU that are all closed, so people working on computers outside the intensive care unit could pass those messages to family and those teams would feed back to us if there were particular problems or if we needed a particular phone call. We had to schedule phone calls to make sure that everybody had had an equal opportunity to speak with doctors and nurses if those things were needed. And like so many things in life it's often the better-off people who have the communication skills to get what they need from doctors and nurses and so on, and it's the underserved who don't have those skills and who are often the most neglected. And making sure that didn't happen was a very difficult thing for us.

For family members at home it was important to be informed how their loved one was doing. Previously, staff could update family members on any changes in their loved one’s condition when they came to see them on the ward, whilst going about their work. Bad news would never be broken on the phone if staff could avoid it. During the COVID-19 pandemic, with patient numbers higher than usual and family members absent from hospital wards (due to the visitor ban), communication with family members became an additional task for staff. Bad news had to be shared over the phone, often when staff members and family members had never seen each other face to face. For staff this was significant extra workload. The absence of family members from the ward and these new ways of communicating were also seen as a source of mental distress to staff.

In the absence of organised ways of communication between hospital staff and family members in the early days of the pandemic, the family members we spoke to felt cut off from their loved one, isolated, disempowered and desperate for information (see also ‘Staying in touch during the visitor ban’). Calling the hospital was the only way to gain a sense of how a loved one was doing, and a way to care at a distance. Due to staff redeployment it was near impossible to establish relationships with specific staff members. Dana counted up the 24 doctors and 64 nurses she spoke to during her husband’s admission.

 

Calling the hospital was the only way for Dana to look after her husband.

Calling the hospital was the only way for Dana to look after her husband.

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And yet I waited all day for them, that was, like, the only thing you could do. I would call the hospital…it became a ritual for me that I would get up before six and I would call before the changeover ’cause I knew that they would…staff would change over at about eight and if you called close to eight, you couldn’t speak to anybody because they were too busy, they didn’t answer the phone.

I would get up at six and I would try and get through. It would often take several times of phoning. I didn’t have a direct number, I was never given a direct number until much later and I had to go through the whole process of listening to the recorded message and the music, et cetera.

And I would generally get through to a nurse and was often really rushed, often busy, didn’t really have time to talk to me, sometimes irritable. I understood that they were pressurised and stressed and particularly at that time I understood that because of the pressure, there was three to one in intensive care where there’s normally one-to-one.

And it was often difficult to hear because they were in full PPE. I only understood this later, I often found it very difficult to hear what they were saying, always asked everybody their name and I made notes all the time, I wrote down everybody’s names.

I spoke to 24 doctors and 64 nurses, and I spoke to each of their names in the time that my husband was there, and it was often difficult to hear their names or to hear what they were saying clearly and I understood alter it was because of the PPE, it was difficult for them to talk with all the stuff on.

And I guess having a little bit of medical background because of being a speech and language therapist, I understood that they were busy doing what they needed to do, they didn’t have time to spend with families in a way that you would have if you’re present at the hospital where, when there’s time, people can talk to you. But you calling doesn’t necessarily mean it’s a time that suits anybody.

Anyway, I made those calls, I didn’t want to be a pain, but I called once or twice or sometimes three times just because I needed to hear that…it was the only way we could look after him, in a sense.

 

Kate lost trust in the ward when they did not update her on her husband’s deterioration.

Kate lost trust in the ward when they did not update her on her husband’s deterioration.

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Maybe we can start with the difference that you described between the ward and the ICU?

Yeah. Communication was the biggest issue for me, and I have to say, before I go kind of into that, it was one of the things that I was considering going to PALS about. Not as a complaint, but just to have that conversation about, this is what it’s like to be on the other side. Because I had lots of those conversations with friends that still work clinically, because I don’t think they get that. Unless you’ve done it, you really don’t get it.

So, ITU were brilliant, I have to say. And if they couldn’t speak to me, they would give me very clear parameters in terms of what to expect. So, I will call you at, and the reason I’m calling you at that, is because I’ve got a drug round or I need to go and do this, or whatever, which was great. And then they went above and beyond, because I would then get phone calls from that nurse, I need to find that nurse, I have to have that conversation with that nurse, because he needs to understand the effect he had, and the difference he made, just by making that phone call and having that conversation as a human. So, I’ll find him at some point.

The wards are an absolute different kettle of fish. I was just…and again there was this conflict for me, because I know what it’s like being on a busy ward, and having to deal with patients, families, and it certainly would have changed if I was still clinical, it certainly would have changed the way that I approach families. So, I just wanted to speak to, the nurses were fine, but I needed to speak to a doctor, so that I could have that conversation. And I think it would have been better if they’d have said, had done the same thing, this is when I can speak to you, or this is the reason why…but they didn’t. It was the, okay, we’ll ring you then, and they didn’t. And the biggest issue was that they didn’t contact me when he deteriorated.

I sat in my house with my children, thinking everything was fine, and it wasn’t. So, I lost all trust in them, because I thought, if he dies, they’re not going to call me. And that was really hard. And I think what that did, is that then stepped up the number of times I was calling. I thought, right, I’m going to ring regularly now, because I need to know what’s going on.

After the initial phase when many hospitals were still working out how best to update family members at home, individual NHS trusts quickly developed more structured ways to do so. Communication between home and hospital took three forms:

  1. The doctors and nurses on intensive care ward phoned the family members,
  2. Family members phoned the intensive care ward
  3. In some hospitals, a so-called ‘hospital liaison team’ or ‘family communication team’ phoned family members and answered incoming calls.

Whilst communication over the phone was of crucial importance for family members we spoke to, key aspects of communication got lost. For instance, Dana found it hard to hear nurses if they were in full PPE and calls were often short and “really harsh”. Mike found it difficult to understand doctors with a strong accent when he was unable to see them.

Designated contact persons

In an attempt to ensure clinical staff had as much time as possible for patient care, family members were often asked to nominate one individual to be the contact person to receive information from the hospital and ask questions. This person could be the partner, a child, a sibling, or another family member. Some volunteered themselves, other families chose to volunteer the closest relative who had a medical background, as they would have a better understanding of what the doctors were saying and pass information onto others.

 

Shireen’s son was the designated contact person for the doctors, as she felt his training as a GP gave him the appropriate knowledge to understand what was said.

Shireen’s son was the designated contact person for the doctors, as she felt his training as a GP gave him the appropriate knowledge to understand what was said.

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And so, your doctors were in touch with your son. Can you tell me a bit more about what that looked like?

Shireen: Yeah. It was very friendly, the doctors, even though when I was in the hospital and the doctors come round, so my son asked me when the doctor comes round just ring me so they can, so what is the condition and what [inaudible] and he passed them, and they told him everything. …And, you know, the doctors were, never did, never refused to speak, what my son asked them they gave him the answers and everything. They never refused. And when I got out and he’s, when doctors come on the rounds, every day, even the physio, every day physio comes round so they give him, he tried to contact my son and then my son ask everything, his condition and everything. Then my son give him the doctor said, the physio said like that. So, he knows every time he contact the doctor, anything he get confused so he asked them to do this phone thing.

Okay. And so, did the doctors call your son at a particular time in the day?

Shireen: No, when it comes to a round in the ward. Yes, if sometimes my son thinks…

Yacoob: Mostly, when the doctor come round and checking me there, so I put the phone to my son to talk to him because you know, when doctors say something, which is no my knowledge much, so they keep talking to my son, all the time.

Shireen: Yes. But when he’s not feeling better, I mean, he's not in a good, my son sometimes phoned the ward nurse and asked how his condition is and everything.

Yeah. So sometimes, you called your son when the doctor came and sometimes your son called the doctors to find out. And is this your doctor, your son who is a GP?

Yacoob: GP.

Shireen: Yes.

 

Donna sat by the phone for 20 days, afraid to miss a call, and only asked staff to call her daughter when she had to be elsewhere.

Donna sat by the phone for 20 days, afraid to miss a call, and only asked staff to call her daughter when she had to be elsewhere.

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I literally from the time Simon went into hospital I took the phone by the bed, obviously, all day with me, in the shower, because I was so frightened, I was going to get a phone call to say could you come now. I didn’t want to miss it. I had a couple of appointments at the hospital. One was my vaccine. So, my daughter then took the calls from the hospital, and actually that was quite a nice relief for me because I couldn’t take the phone so I knew they couldn’t phone me with bad news. It was quite nice when somebody else had the phone. So, when they phoned my daughter that sort of took it off me a little bit, because I was waiting for bad news.

Does that mean they were calling you on the landline?

Yeah, they were calling me on the landline or the mobile, but on a couple of occasions where I had the appointments at the hospital myself, they called my daughter, because I said I’ve got a couple of appointments, if you can’t get hold of me, because I was so frightened, they couldn’t get hold of me, I’m going to be going out, could you call my daughter, so they did. The phone calls were on the landline normally. That’s why I stayed in. I stayed in anyway because of the COVID and the situation. So, I was here.

After your quarantine for your own Covid positive test you also stayed in, you were saying.

Yeah. I can’t remember how long. I didn’t go out. Because I’m never off work. I literally just sat by this phone from 29 December when I was ill, and Simon went in on 5 January, and I literally sat by the phone a good 20 or more days, or more than that. I literally just sat here. Because you are frightened of missing the calls. Even though you know that they’re going to get hold of you, but I thought oh, what if, what if. You’re frightened of missing the calls all the time. And Sophie felt the same, when she had the calls, she was frightened of missing any calls.

Of course, when doctors called, members of the same household could huddle around the phone and be part of the call. Deborah described that whenever she phoned the ICU, her daughter would be on another line “so she could listen in … and ask questions.” For Elizabeth and Deborah taking these calls while in the presence of others was an additional worry, and they tried to ‘keep it together’ to shield those close to them from their own emotions.

Being the designated contact person in a family came with the responsibility of passing information on to others. Some asked those they called to “cascade” this information to other family members and friends. Michael’s sister had a WhatsApp group where she updated the transnational family, which he described as the “daily press release”. Emma’s husband also had a WhatsApp group:

 

Emma’s husband passed updates from the clinical staff on to other family members, and asked questions on their behalf.

Emma’s husband passed updates from the clinical staff on to other family members, and asked questions on their behalf.

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Let’s go back a little bit over the contact that your family had with staff, are you aware of how they were kept informed of how you…

So, my husband was the one that got any updates, and then my husband would phone my mum and dad and my sister, and then my mum and dad would phone my auntie, and my sister would then phone whoever, and my husband would then phone my friends, or would phone one of my friends who then, as you do, sets up a WhatsApp group, and it filters through the WhatsApp groups. So [husband] would phone once a day and speak to whoever, or they would phone him, but it was only once a day, an update.

Yeah, and my colleagues that I work with, they were limited to phoning once a day as well, because they would phone up, apparently, and it made a lot of the staff in ITU laugh, they would phone up continuously, that they had to speak to the matron and matron had to let them know that they would give an update on me once a day when the nurse in charge did an update.

So I think they were bombarded, but yeah, the consultant who looked after me would phone [name husband] and give him an update daily on progress, and [name husband] would have a list of questions which I found when I…not long ago, actually, and he’d have a list of questions of things that he’d want to ask, or my parents, my sister or somebody would want to ask, and he would go through and ask the questions, get the answers and then pass the answers back, yeah. But that must have been hard for them, because normally you see someone, don’t you, you know. For me, it was fine, I was asleep, I was having an extended lay in, but it’s hard for them, because they can’t see you, and they can’t even touch you, and I think that’s got to be the hardest part for your family, and people don’t think about them, about how it affects them a lot of the time.

It’s probably harder for them than it is for the person going through it at the time.

 

For Rani, dealing with the many calls around her sister’s admission to ICU was overwhelming as she was also looking after her husband and children.

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For Rani, dealing with the many calls around her sister’s admission to ICU was overwhelming as she was also looking after her husband and children.

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Yeah, when I found out that Nahied was admitted at the hospital, at the beginning it was just like an asthma attack.  But then, after a few days had passed, she was tested COVID positive, which we didn’t know that she had COVID.

And then, I was her next of kin, so the doctors and the nurses were like contacting me to discuss the plan, what we need to do next.  So, I was like in the middle of everything.  I speak to the doctors, speak to the nurses, and then speak to the rest of the family, to put the input of the family as well.  And then I used to have constantly people calling me, what’s happening, what’s going on?  It was a little bit too much for me, because I’ve got my husband and my own children to look after as well.

But, on top of that, at that time, Nahied, was the top priority for me at that time.  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. 

Elizabeth and Donna found passing the information to others a big responsibility, as it involved managing the hopes of others as well as their own. This added to emotional strain to an already difficult situation. For others, having to take calls from the hospital became too much, so they asked others to step in.

 

Donna had many messages from friends and family who were wanting to know how her husband was doing.

Donna had many messages from friends and family who were wanting to know how her husband was doing.

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Because I was the only one liaising with the hospital and then doing this Facetiming, you were having to try and relay that information. To be fair, it’s like being at work, trying to relay about your loved one to the rest of the family and everybody. I was getting literally 40 calls and messages a day, because we’ve got a lot of friends and family. So, everybody wanted to know. And it was very difficult to try and tell people, family members and friends, that there wasn’t too much… Because the minute you said oh, little bit brighter today, they said oh great, great. So, everybody looks at it differently and they think there’s going to be huge improvement. Then you’re having to say the next day there’s not a big improvement and things aren’t very good. So, we were really careful how we told everyone. But yeah, holding it together, because I was the only one, apart from my daughter, who was struggling. She was very helpful because she was staying with me, we were Facetiming. So, it was both of us really trying to hold it all together with everyone else. And because it’s my husband, you’ve got friends and family and children, but it’s your husband, isn’t it? So that’s what’s harder.

Did you feel like you had to make any decisions anywhere between his admission and when you last saw him?

Yes, obviously there’s quite a lot of decisions because day to day life has to keep going, but you’re stuck here not being able to visit, not being able to go out, talking on the phone and then trying to, I’ve got to make that decision when you got the news to phone the rest of the family. That was quite hard. So, you’re trying to make a decision, right, I’m going to phone… I did it in order. I phoned our daughter first, then my stepson, then my stepdaughter, and then other family members and friends. So, you’re making those decisions all the time, of different…and you’re really careful to not give too much information because you don’t want to jinx the situation, so you’re really careful of what you say, because otherwise, you didn’t know which way it was going. He could have made a really good recovery and come out of ventilation, which people do, or the other decision where it’s not good at all, you know. So yeah, you’re having to make decisions all the time.

 

Elizabeth found being the designated contact person for the hospital emotionally difficult and exhausting.

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Elizabeth found being the designated contact person for the hospital emotionally difficult and exhausting.

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Can you say a bit more about being that designated person? What is that like? So, you also have the responsibility to inform other people?

Yes.

What was that like for you?

That was really hard, really. Because people, as a nurse they maybe, expected me to know more than I do, but nobody knew anything about this disease at that time; it was very, very limited. And they maybe, expected me to know more medically than I maybe did. And also, trying to be honest with them, I think it was trying to be honest to say yes, he is really, really poorly. …And I’d say yes, he’s all right, but please remember he’s still very, very, very poorly. And that was it. I was like yeah, I’m giving with one and I’m taking away with another. That was really hard being that designated spokesperson, really, really hard. Obviously, it’s a role I would want; I wouldn’t want to not have that information. But it is, it was yeah.

I hear you say that you’re responsible for managing their hope as well as yours?

Yes, yes. I didn’t want to give them false hope. I didn’t want them to be totally despondent. But I needed to, I was always honest. I needed to be honest. And I am a very honest person and I needed to be. But… I didn’t want to take their hope away. …It’s exhausting, absolutely exhausting doing that.

 

Paul’s sister took over from his wife as a contact person for the hospital, when his situation become critical.

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Paul’s sister took over from his wife as a contact person for the hospital, when his situation become critical.

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Can you tell me a bit more about what communication between your wife and the clinical staff was like at the time?

Yes. I think they were on the phone nearly every day. They were very good. Communication was really good. They didn’t try to hide anything. They were totally truthful. But after a time when I think I was probably at my worst when they told my wife be prepared for the worst, he might not make it, she couldn’t take any more phone calls, she was traumatised. So, my sister had to be the go between of the hospital and the family. My sister stays in Wales, and I’ve not seen her for over a year because of lockdown, so we can’t even grieve properly for my mum passing away. But she was in touch with the hospital, and a cousin of mine who was a nurse, she’s now recently retired, she spoke to the hospital because she knew all the medical terms and the technology of what they were actually talking about. She could ask the right questions. And then my brother was on the phone a couple of times to consultants. So, the communication I understand was really good. Every day they spoke.

Speaking to doctors and nurses

Doctors and nurses had different kinds of information to share with family members. Doctors called when there was a significant change in how somebody was doing, when a decision needed to be taken, and to ask family members to come in for a visit if they felt a patient was approaching the end-of-life. Nurses called family members for the daily ICU update, details of the oxygen levels and other medical indicators, and to learn more about how they could personalise their care (see also ‘Caring at a distance’).

 

Stephanie got a call from doctors when Peter was really poorly, but mostly talked to nurses about technical information.

Stephanie got a call from doctors when Peter was really poorly, but mostly talked to nurses about technical information.

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The consultants were phoning me up when he was really poorly they were phoning me up most days really, the rest of the time I would speak to the nurse looking after him on that [inaudible] the doctor would answer the phone and they would say, you know, I’d ask to speak to the nurse looking after him because I didn’t really know who’d answered the telephone and they would say oh i’ve been looking after him I’ve just seen him do you want me to give you an update or would you prefer the nurse to do it, so I was like yeah that’s fine. So, I was getting updates mainly from the nurses looking after him but also from the doctors as well. And they would, especially the nurse that knew me they would tell me technical information, you know, they were telling me things like ventilator settings and things like that on, you know, on a particular day then I sort of had a bit better idea how he was progressing and what sort of regime they were using for weaning him off the ventilator and things like that when, when, when he got to that stage. And, you know, when he did have really severe organ failure, they were telling me sort of what doses of adrenalin he was receiving, things like that. So right from the beginning the when he went into hospital he was put on CPAP immediately so they, he was only I think he was in A&E and then he was only on a ward for about 12 hours before he was transferred to intensive care so yeah they basically told me any technical details that I wanted that I asked for and actually volunteered for technical information the whole way through, the whole way through.

 

Receiving a call from a nurse about the care he had provided for her husband on the ward was really important to Kate.

Receiving a call from a nurse about the care he had provided for her husband on the ward was really important to Kate.

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So, this nurse rang me, and he’d finished his shift, and I knew he had quite a long way to go, ‘cause he’d told me where he was working, and he had finished his shift, he’d donned, doffed and donned, whatever, and he wanted to ring me and tell me how the day had gone, from a nursing perspective. And that is the one episode in all of this, that just stands out to me. Because he didn’t need to do that. He could have just gone home to his family, and, you know, just left that. I’d already spoken to the consultant, so he could have kind of ticked that box, and gone home, but he didn’t. He rang me. And he was telling me things, like how he’d washed him. And that was really important, because it was, although I needed the clinical stuff, I needed that too.

In the absence of other information, some family members tried to deduce whether things would be serious from who called and the timing and frequency of calls. Donna and others noted the use or absence of particular words in the phone calls with doctors.

 

Deborah inferred how serious things were from which type of doctor rang her.

Deborah inferred how serious things were from which type of doctor rang her.

Age at interview: 54
Sex: Female
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In the Intensive Care Unit, you always knew if there was something to worry about, depending on which doctor rang you, so when the consultants would always ring you, it would be, oh my gosh, no, no. Sometimes I would come into my bedroom, ‘cause you had to always give your, I used to have to give my husband’s date of birth every time, so that would authorise them to speak to me, and sometimes I would do that, and then I would run away, so that the kids, I know it sounds very weak, so that the kids would be, mum it’s fine, come in, it’s fine, dad’s doing okay, ‘cause your brain just goes all over the place really. And you kind of think, well, you’ve got through the cancer, you’re going to get through this as well. And amazingly he did.

 

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

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

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

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

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

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

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

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

Sadia, Nahied’s sister and others described the honesty with which doctors and nurses shared information. While this was sometimes hard to take, on the whole family members really appreciated it. Nahied’s sister recalled that doctors were “really honest. … Not hiding anything from us. [They were honest] about her health, when they were talking to me, regarding her lungs, her heart, they were just telling me straightaway, that’s our plan, this is the medication we are trying. She’s not responding to the medication, so we’re going to try something else.”

Speaking face-to-face allows clinicians and family members to establish a relationship and a sense of trust. But without being able to visit and witness changes in their loved one’s condition first-hand, some family members found it hard to relate to what clinicians were telling them over the phone, especially as changes often could happen frequently and suddenly. This was stressful for both families and doctors. Sadia felt that messages from clinicians inconsistent, and that clinicians communicated treatment decisions in a harsh way.

 

Sadia found the messages from clinicians “very inconsistent” and “harsh”.

Sadia found the messages from clinicians “very inconsistent” and “harsh”.

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

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

But again, I think the way it was communicated was so harsh, in that, you know, discussing ceiling of care, I just think there needs to be a bit of discussion around it, rather than just saying, straight out, this is what the ceiling of care’s going to be, he’s got 24 hours, if he doesn’t improve, we’re taking him off. And I think that’s the other impression that was given, that if there’s no improvement within those 24 hours, then effectively he won’t even continue with the CPAP machine, so they’ve got to see an improvement in those 24 hours, and if not, they’re not going to carry on.

Anyway, he was put on high levels of oxygen and then 24 hours later, the doctor comes in and says, oh, you’re improving really well, we’re going to put you on a ward. And it was just like this kind of up and down, and the inconsistency in the message, was just like, driving us insane.

Not all family members were unfamiliar with the doctors they spoke to. Some had been hospitalised previously and encountered staff members they knew during their ICU admission with Covid. It was often helpful to know that somebody who had met their loved one at a time when they were not sedated. Deborah was glad that her husband’s haematologist was involved in his care, saying: “I always felt more comfortable with the fact that his haematologist was there, as well as his intensive…I felt like all bases were covered. … The fact that his haematologist knew him, and, you know, knew the holistic person, not just somebody that’s come in … because you don’t get to know them, do you know what I mean?” To make up for this lack of knowledge, nurses frequently called family members to get to know their patients (see ‘Sending pictures and audio to support nursing care- Caring at a distance’)

Calling the hospital

In addition to these routine calls from hospitals, many of the people we spoke to called the hospital themselves, often a couple of times a day. For Sadia it was important to learn about her father’s oxygen levels, and she contacted the nurses regularly for updates (such as his oxygen levels, known as saturation levels, or ‘sats’). Donna also called the hospital to learn about her husband’s sats, because her medical trained family members were asking for them, but she eventually found it more helpful to focus less on the numbers and more on how he was doing day to day.

 

Sadia called the ward to learn more about her father’s oxygen levels.

Sadia called the ward to learn more about her father’s oxygen levels.

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So, yeah, so then he was put on the CPAP machine, well again, actually, no, it took a bit of time, and then it was kind of like, okay, they’d made out that it was so critical, these next 24 hours, then you’re kind of expecting updates regularly, and they’d kind of said, as soon as we get him on the machine, we’ll let you know how he responds to it.  And it was like, we didn’t hear anything, and then it must have been a good five hours later, in that time I’d tried to call, and it was kind of, you know, it was kind of like, we’ll call you once we know what’s going on.  Which again, I understand, they’re very busy, but I think when you’re in a situation as a family member, when you’ve heard news like that, when you’ve been made out to think that these next few hours are critical, you’re kind of like, well, someone give me something as to what’s going on?

The nurses were amazing, I was kind of one of those people, one of those really annoying kinds of patient’s daughters that was regularly before, in the evening, I’d call at night-time, before I went to bed, I’d call to get an update on his saturations and how he was getting on. And then also, first thing in the morning, to find out how his night had been, and then kind of in the middle of the day. So, I’d be wanting to keep an eye on his saturations, and I think a lot of the time, doctors and nurses, are like, well what do you need to know this for? But because I had a basic understanding of what was going on, I’d gone through it with my husband, and obviously done loads of research, for me it gave me that comfort knowing, okay, I know where he’s kind of at. And then when it wasn’t going so great, I kind of knew.

 

Eventually, Donna found it more helpful to focus on how Simon was doing than to know his saturation levels.

Eventually, Donna found it more helpful to focus on how Simon was doing than to know his saturation levels.

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You mentioned that your family is medical, so do you feel like that helped you or that hindered you in some way?

Both. It prepares you, because I’ve always been prepared, because I obviously have dealt with end of life and lots of different people throughout a lot of years, but then sometimes if you’ve got too much information it’s not a great thing because you’re knowing what’s going to happen.

So obviously when I kept asking about the figures and numbers, because everyone was asking me to ask what’s the sats, what’s the oxygen, what’s this, what’s that, because they were nurses and things, you’re like, oh, and I was getting in a muddle and trying to portray that over, and then they were going try to forget the figures and numbers because things change all the time. So, I could get that eventually and just focus on the now, how is Simon today, without thinking about figures, numbers. So, yeah, it’s a bit of both. It helps you but it doeOKs hinder you, because then you know a little bit too much, especially if you’ve got family members that are medical it’s not always a great thing when you’ve got your loved one in hospital, in ITU. It’s probably best not to have the knowledge, possibly. Not sure.

Dana and Elizabeth described how calling the hospital became a sort of ritual in a day otherwise characterised by uncertainty and anxiety (see also ‘Uncertain survival’).

 

Elizabeth started her day by calling the ward to hear that her husband was ok.

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Elizabeth started her day by calling the ward to hear that her husband was ok.

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It’s strange how you get into this ritual, because I knew in the afternoon when I spoke to the care team, I’d phone my mother-in-law and then I’d phone my mum who would phone my two sisters. You do get into that. But you’re so anxious, so anxious, even just picking that phone up on a morning and thinking oh god. Even though I knew they would have told me; I would have known if there was something. It’s just so draining. Just exhaustion. You go from a phone call, you have that little ha, yes, everything’s okay, for a minute; and then you go back and got to make the phone call in the afternoon. And then you get the phone call and then you think yeah. Then I would tend to go for a walk because I thought I’ve got…they’d just spoken to me, even though I knew things could change.

And on a night if I couldn’t quite get through onto the unit, and it was like I was consciously thinking my mum and my mother-in-law are waiting for my phone calls and I hadn’t been able to speak to them, you know what I mean, because it’s like that routine. And I can remember one afternoon the care team didn’t phone till a lot later, you knew roughly what time they were going to phone, and it was a lot later, and I can remember just being nearly on my… Even though I would have known, but it’s strange, but maybe because I was conscious of everybody else waiting for the news as well; it wasn’t just me, it was the whole, the whole family.

After he died the next day, it was just relief I wasn’t listening for those phone calls anymore. I did have to change my ring tone; I did have to change it. And I’m not a person who was tied to my phone, never before. Most of the messages I used to have were, what’s the point of having a mobile phone if it’s not turned on. But I became that person who couldn’t leave it; went into the shower and had my mobile phone in the shower, and that wasn’t me. But I just, you were just tied to that phone just waiting.

Yes. It’s the waiting for the possibility of being called, right?

Yes. And you don’t want to be called because if a doctor phones you then you knew that was bad news. I did have a couple of phone calls, so when they phoned when you weren’t expecting it that was worse because you knew, even though you knew that was going to be news, that was going to be some news that you didn’t really want to hear.

Many were mindful not to ring too much, and some felt guilty about calling, knowing how busy staff members were. Many also tried to time their calls to fit into the hospital routine of shifts and handovers. Dana, for instance, got up at 6 a.m. to try a catch nurses at the end of their shift.

Family Liaison services

Some hospitals developed family liaison services or family communication teams. These teams were commonly made up of medical students, retired consultants, and redeployed non-ICU consultants. They made daily phone calls with family members of patients who were in ICU, aimed at providing daily medical updates, asking family members to share the patient’s social and medical history, and to facilitate video calls between patients and family members. Communications by liaison teams were really appreciated by family members. For families of patients who were moved between hospitals, the differences between hospitals that were staffed sufficiently to set up such services and those that were not, were particularly notable.

 

When Victor was moved between hospitals, the impact of staffing on communication with family became particularly apparent to Paula.

When Victor was moved between hospitals, the impact of staffing on communication with family became particularly apparent to Paula.

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The information that I got from [name teaching hospital] was very much in-depth, with everything that they did with him. You know, from how they were cleaning him, what they were doing and whether they’d played the videos to him, what medication he was on. And they went through the whole thing. It could be about 20 minutes I’d be on the phone sometimes. So, it was...I didn’t really have to do too much research. And I think sometimes ignorance is bliss.

In some sense.

And did you want more information at any...did you want a different kind of information at different stages?

When he went back to [name local hospital] I found really hard, because I’d had that...the information in the morning... Because the doctors used to do their rounds in the morning and I’d have my update it, sort of, settled my mind during the day. Whereas when he went back to [name local hospital] and he was still in ICU, there was one night that I didn’t get a call and it just...me and Rob [son] were, like, on the floor with that, just like, just to have that call, that...it was, like, that reassurance of a phone call. Yeah, it was just that reassurance. But they were very...it wasn’t that they weren’t thorough, but you could hear the... their time was precious to them, you know? That’s how I felt and, like I said, in [name local hospital] you could always hear the machines going off in the background and what have you, so that was hard.

Very much difference between those two hospitals, then?

Yeah. But I think, like I said, because [name teaching hospital] was a training hospital, so a lot of the training doctors were going around with the main doctors collecting all the information and then they’d go away and phone. Which made it so much easier, I think, for the main doctors there.

Some family members we spoke to found the service invaluable, although sometimes felt they could not help with all the questions they had. Kate, whose husband was in hospital for two weeks in April 2020, felt the people on the service could not provide her with the “soft stuff” she was looking for., Although she felt that staff had done their best at the time, It was difficult for Kate to feel that things were not good enough. That a consultant on ICU took time to listen was really important to her.

 

Kate felt that the liaison team could not provide what the ICU doctors could.

Kate felt that the liaison team could not provide what the ICU doctors could.

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They had a mechanism in place where you didn’t ring the ward at one point, ‘cause I think what was happening is everybody was ringing all the time, saying, how’s my, you know, whoever?

So, you would ring this particular number, and it was the PALS number, or it was a…it was somebody who wasn’t clinical, but they were manning the phones, and you would give the patient’s name and number, and they would read off the screen what was happening, which I think was great, but what they would be doing is reading to you nursing notes. What that doesn’t tell the person that’s ringing is, are they eating, you know? How do they look? Have the asked for me, you know? What can I do? Do they need toothpaste? That sort of…the kind of, the softer skills, or the softer information that you need to know. And I suppose going back and thinking about what I was talking about, the photographs, I needed to see that, ‘cause I needed to see him, it’s the same thing with that communication. You can’t see the patient through nursing notes. And there’s very little information that they could have given. So, if they’d have said, okay, this is this, this is this, and I’d have asked a question, they couldn’t have answered that, because it was, the people that were answering the phones were not necessarily the people that can give that. And I think there were nurses manning it, but they weren’t directly involved in that care.

So, I think, again, it’s one of those conflicts that I had, that I was really disappointed with the communication, two thirds of it, ‘cause I’m not going to fault ITU, I thought they were ace. But the conflict arises because I understand the pressures that they were under at that point, they were dealing with something they’d never dealt with before, et cetera, et cetera, and I acknowledge that. But it’s almost like the humanity was lost in the mix. And people were scrambling around to put lines of communication in place, but I don’t know, had anybody at any point said to families, what do you need? It’s almost like there’s this inherent assumption that the clinicians or management can sit around a board table, and go, what are families going to need? And that’s what’s lost. And I’ve found this, you know, through my own work, I know that, that you can have a view as somebody working in that environment as to what you think the patient needs, or you think what the family needs, but unless you ask the family, you’ll miss the mark. And that’s what it felt like. They put all these things in place, like, they had this thing where you could take a picture of a drawing that your children had done, and email it to them, and they’d print it, laminate it and take it to the person. And, whilst on the face of it that looks really lovely, [non-speech event] it just is impersonal and actually what you want to do, is have a conversation with your person or the softer stuff. It was almost paying lip service to it, it was like, what can we do to placate the families? That’s what it felt like. And I don’t think that was the intention at all, but it felt like no one had asked the families, so communication was really poor, really poor. Yeah.

And again, I do feel really conflicted about it, because I don’t think it was intentional, they were doing their best at the time, but they failed. Yeah, they failed.

I know it’s one to one nursing, I know it is in ITU, but that was difficult. And they’re intensivists, I know by what they’re doing, but they had the time to speak to me. And at one point, the consultant, the arrogant consultant, who I really like, I say that, but I really liked him, I couldn’t get my words out, I’d be crying down the phone, and he just sat and listened to me. He didn’t say, can we call you back, or whatever. He got how upset I was, down the phone, and he gave me the space to do that, even knowing he had a full intensive care ward and that he had patients that were dying, he gave me the space to do that, yeah. So, I know that they were really up against it at that point.

 

Andrew described the positive effects this family liaison service had on him and his family.

Andrew described the positive effects this family liaison service had on him and his family.

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In some ways when you’re on a ventilator the family has the, is going through more of a worse trauma, it has a worse time of it than the patient because on the one front the patient is having a bad time of it because they’re almost dying but we’re as, we’re asleep. So, I mean, we, you can talk about that experience and, at some point which I am sure we will. But, but you’re asleep, it’s the, the family that is worrying and concerned and doesn’t know what’s happening with their loved ones and, kind of, need just, kind of, just concerned and worried about that information.

And so, I think to have some amazingly, shockingly well qualified staff manning the phones and being available and call, being able to, kind of, call back the family, I guess, on one front it stops the family, kind of, clogging up the switchboards and keeping on calling, calling back. But it gave them, I think it allows the family to, kind of, be connected and, kind of, realise that, and just know, yeah, I guess their welfare to be managed as well, and as best as we can, through the, such a traumatic period. And the staffing was amazing, I think you had, I guess, world expert surgeons manning the phones.

Maybe their specialty was in, in knees and not lungs and stuff but the, but they’re certainly, and then able to ha, give the right level of comfort and information, I think they were, they adjusted the way they interacted depending on the, I guess, the family and the questions. I guess some people wanted more qualitative, yeah, how are they doing? Other people were more interested in, well, what are, again, what are the numbers? Tell me really what’s going on. And then...

And did your wife talk to you about her contact with the family liaison?

Yeah, yeah, so that, most definitely, they were good and then actually, not only my wife and in my family as well, my broader family was able to, kind of, get the information and channel that in. And of course, everyone is connected every, and we’ve got some, some family members which are also part of the, or part of that medical profession and so to be able to have all of those questions answered as well because you can go and say, well what is this particular level? And that, and you get, have that right, that information, and it was extraordinarily helpful for the family, they, they go through that, you know, difficult, difficult time, but at least they are, you’re not wondering what’s going on you’re just, you feel as if you are, kind of, are a part of it, you can feel that you’re being looked after as best as one can. You’re being communicated to, yeah, it’s I think it was hugely helpful for the family.

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