The impact of the COVID-19 pandemic on end-of-life care in LTCFs in England: A qualitative study of LTCF staff experiences

Visitation as an exception

Participants in the majority of the eight LTCFs included in the study reported allowing visitation at end of life, which at times was viewed by some participants as breaching the public guidance issued by the government. Some managers in particular considered end of life to be an exceptional circumstance, claiming it was ‘different’, and viewed the risk of COVID-19 transmission as smaller than not providing appropriate end-of-life care.

One manager explained that they thought the risks of allowing visitation with personal protective equipment (PPE) did not outweigh the benefits of visiting a loved one at the end of their life; thus, the facility bent the rules and allowed visitation at the end of life as an exception:

Yeah, of course we did [allow visitation at the end of life]. I mean, you can’t . . . I don’t know how any sane person could say, oh, you’re not coming in in case you bring COVID to someone who’s already dying. You know, what difference is that going to make? Some of the things we did in our LTCF, we probably shouldn’t have done, but in hindsight now I think that a lot of other LTCFs wish they’d done it that way because, you know, you’d think of yourself in that situation and you know, what are the risks really? P014

Other staff members spoke of how the organisation of the LTCF building helped them to allow visitation as an exception. One member of staff remembered how they moved residents who were at the end of their life to ground floor rooms that were more easily accessible, so they could ‘bend the rules’ and allow visitation under the exceptional circumstance of death being anticipated. In another LTCF, staff provided end-of-life care for two residents during the pandemic, both of whom were already living in conveniently placed rooms: one on the top floor by a fire escape and one on the ground floor next to the fire door. This enabled the LTCF to allow visitation as an exception at end of life with relative ease:

It was really quite funny because the two people who died were at the end of the building. One was on the top floor, so the family used to come up the fire escape and come in. They’d walk up and then they come in that door, and then the other lady was on the ground floor in the room below, and there was a fire door right next to her, so she’d just come. She’d ring the front doorbell, and then she’d go round to where she needed to. She used to go just straight in the room with her face mask and the gloves and stuff and then just literally go back out again. She didn’t . . . they didn’t mingle, we said if you need anything or you’re worried about your mum or whatever, just press the bell and somebody will come. P002

However, staff in other LTCFs followed the guidance more strictly and did not allow visitation even when a resident was viewed as nearing the end of their life. Staff reported finding it difficult seeing relatives watching their loved one die from outside the facility, that is, through a window; one member of staff revealed that they breached the guidance and hugged a grieving relative, claiming standing there and not providing comfort was ‘not a human thing to do’:

There’s one person that sticks in my head. It was a lady, she was in a bedroom here, on end of life and her family couldn’t come in, and they were stood at the window with the priest watching her die. And we were in the room, trying to hold it together. We couldn’t. We couldn’t hold it together. You wanted to hug the relatives, and say sorry, but you can’t. I’m not gonna lie though, there was one woman who I was very close to, and I’m very close to the family and she died, and I said I can’t stand here and watch you break down on your own, and I did hug her because I can’t watch somebody physically breakdown and just stand there, it’s not a human thing to do. You can give me guidance but I’m going to support that person. P013

In another LTCF, a senior carer spoke about finding the rapidly changing guidance difficult to deal with in terms of allowing visitation at end of life, with one relative unable to say goodbye to their husband, and another being allowed to visit their husband at end of life just a 2 weeks later:

Yeah, we had this one guy, and he was dying, and they wouldn’t let his wife come and see him, so she had to stand at his bedroom window. And then there was, like, two weeks later, another guy was dying, but then the rules had changed, his wife was allowed in, and they were friends, so then she was really upset. P007

In the same LTCF, the housekeeper described how a relative had to watch her husband die through a window ‘in the freezing cold’ and how ‘she should not have had to do that’, further demonstrating the conflict staff felt about the government guidance related to end of life.

The recruitment of staff inexperienced in end of life

All LTCFs who took part in the interviews reported that the pandemic caused staff shortages at some point in their LTCFs. At the height of the pandemic, the government guidance advised care staff to isolate for up to 2 weeks if they developed symptoms of COVID-19 or if they or someone in their household tested positive for COVID-19. ⁸ In addition, some managers reported losing members of staff after the government had announced that COVID-19 vaccinations were to be made mandatory for those working in LTCFs. This meant that some LTCFs relied on agency staff or rapidly recruited new starters, which had implications for end-of-life care within the facility.

Across numerous interviews, experiences of conflict between permanent LTCF staff and agency staff were reported. Several interviewees explained how agency staff did not know the building, residents, or routines well and how this impacted the quality of end-of-life care provided. Participant 001 described themself as ‘a bit of a snob when it comes to end-of-life care’ as they carried out specific rituals when caring for individuals who had died. They lamented that the agency staff did not know the existing end-of-life routines within the LTCF, which made providing quality end-of-life care challenging:

Like I said about the girl who had never seen a death. She’d never washed them. I’ve always been taught with my training as well, and what I like to do is I open the door to let the spirit out. I like to give them a wash, wear their favourite clothes and that’s how I’ve always been, and it’s like you’re doing one nearly every shift, and some of these people have never seen one before, because you come into here and you don’t necessarily die straight away. P001

Another care worker reported that the LTCF they worked in had rapidly recruited individuals who had no prior experience or training in providing social care – the majority of whom came from the hospitality sector as many employees were out of work due to the closure of hospitality establishments.

This is the only sector which was running – the health sector. [. . .] But whoever hasn’t worked in care before, they only know to feed people maybe, even with washing, they struggled. [. . .] It’s always difficult when there is a new starter, we always need to teach them. But at that time, I was working like we were working with four staff for 35-36 residents, four staff and most of them (residents) were bed-bound. [. . .] I had no time to teach them . . . but the company couldn’t find staff. P009

Some participants felt these staff were more of a hindrance than a help as a significant amount of time was needed to show them what to do when workload was already overwhelming. In particular, end-of-life care was found to be a challenge for inexperienced staff who had not dealt with death before.

The role of wider health services

The relationship between LTCFs and wider health services varied greatly, especially in relation to the role of wider health services when delivering end-of-life care. Several LTCFs reported reduced support from wider services, forcing staff to take on more responsibilities around end of life. For example, staff reported having to increase their knowledge of end-of-life protocols and procedures, some of whom were asked to pronounce residents as dead with a physician or general practitioner present on the phone, at times when medical professionals avoided entering LTCFs.

Several staff reported areas of potential bad practice from colleagues within the wider health service related to residents at end of life. One example was the use of blanket ‘Do Not Resuscitate (DNR)’ orders which were issued through the post to all residents in one LTCF without any prior discussion with the facility manager. The same interviewee recalled overhearing a conversation with a hospital doctor explaining to a resident that a DNR meant that they did not need to go into hospital if they tested positive for COVID-19:

I’ll never forget this . . . they explained to a lady, who had dementia . . . well, she had memory loss, and he said to her, ‘so we need to speak to you about do not resuscitate’, and she said, ‘what does that mean?’ He said ‘that you don’t have to go to hospital, that’s what that means’, and she agreed to that, to not being resuscitated, so they lied, the doctors lied about what a DNR actually meant. They told her it just means you don’t go to hospital if you get COVID. P013

One participant reported that the restrictions on the resources LTCFs could have compared to wider health services meant that essentials such as oxygen were not available. They suggested that negative societal attitudes towards older people prevented residents from receiving appropriate healthcare, demonstrating the lack of support LTCFs received from wider services.

I had to try and comfort people at the time who were dying. We couldn’t have oxygen. We were not allowed to. We were not allowed to have oxygen. They weren’t considered suitable to go to hospital because hospital was full, and we were told that they were old, and they had to stay here. [. . .] What was the heartbreaking thing was one resident got refused hospital and oxygen. Nobody should be refused oxygen. Nobody. P006

Recognising end of life

Several LTCF staff discussed the speed and variability of decline of individuals dying with COVID-19, reportedly making it difficult to recognise when a resident was about to die. This was a challenge as staff needed to recognise when someone was ‘really at the end of life’ so that they could consider informing family members, allowing and organising visitation. Participant 011 spoke about the difficulty of ‘getting there on time’ when individuals were COVID-19 positive, as the decline was often quick and there were minimal staff to facilitate visiting:

We tried to get there, you know, we did try to get there. I mean, the last thing you want is for somebody to die on their own. That’s the very last thing you want. We do try to get there, but like I said, we were running on minimal staff, and I’ll be honest, I don’t know how we did it. P011

Participants explained how COVID-19 more commonly infected those who were already nearing the end of their life, reflecting on how they could recognise that an individual was going to die from COVID-19. Others reported the importance of developing skills to recognise the presentation of the stages of end of life that older adults commonly experience. Staff needed to recognise when individuals were in the last days of dying in order to allow visitation, explaining how many of their residents could be seen as at the end of their life and so it was a skill to recognise when visitation was necessary.

Digital contact ‘not the same’ as physical visits

All LTCFs used digital technology as a substitute for physical visitation during lockdowns, though only some used technology to aid communication for those residents at end of life. Those who did not utilise technology instead facilitated face-to-face visitation when practically possible. In the LTCFs who did not offer visitation as an exception at end of life, digital technology was used to assist communication between the resident and their loved ones. Most LTCFs received dedicated iPads to assist with communication; however, in others where iPads were not purchased, staff were forced to use their personal phones.

Several staff, however, commented on how they felt it was inappropriate to substitute physical visitation with digital communication at the end of life, particularly as residents at the end of life often could not look at the screen or comprehend the nature of the communication, let alone understand how to use the technology effectively. Participant 010 felt communication through technology was ‘totally different’ to having a physical presence:

How far the video call and virtual would support an end of life person rather than if somebody had been in and touched their hand is totally different to someone saying hi over the phone or a video call. P010

Other staff members echoed this point; Participant 018 spoke of the difference between physical and online communication between end-of-life residents and their loved ones, highlighting that their LTCF ‘safely’ breached public guidance and prioritised face-to-face visiting for those at end of life:

Obviously we tried to facilitate things like Zoom, but you know when you’re nonverbal and you know . . . there’s nothing like that contact really, so we really stretched the special circumstances kind of thing and used it to our advantage really, but also was kept safe in doing that, but making sure that people got that family time. P018

The presence of physical contact at the end of life was highlighted as important by all interviewees. Participant 001 described the heartbreak they felt when assisting video calls with dying residents, reporting how they grew closer with the residents’ families through empathising with their situation:

Not even ones that were dying were allowed to have any visitors, which was heartbreaking. It was just heartbreaking and watching them, like seeing their parents or grandparents dying on a phone like it’s ‘I’m really sorry, but no it’s not gonna be the night’, kind of thing. It’s ‘do you want me to video call you?’ It’s how to reassure someone that’s dying on a video call and you not being able to be there and that’s where we got close with all the families. P001

Trauma and helplessness

Staff who had provided end-of-life care during the pandemic or were present for a large number of deaths reported feeling traumatised by the experience, and there was a strong sense of helplessness amongst staff. Participant 012 echoed this, while others reported that this sense of helplessness was also felt by the residents and relatives:

It was tough because you’ve got so many and it’s like an impossible task because you just got so many just dropping in front of you. [. . .] I felt helpless. P012

Participant 001 described how traumatising they found some of the COVID-19-related deaths, mentioning that they had a younger member of staff who had started the job just weeks before the pandemic began and had no experience of seeing death:

The amount of residents that we lost, there’s always one that’ll stick in my mind because it was traumatising, and that’s the girl I worked with who had never witnessed a death before. She’d never even done care before. Oh, it was awful. [. . .]. P001

One interviewee had received counselling after dealing with a significant number of deaths in a matter of weeks; others explained that they were still coming to terms with feeling helpless and not being able to prevent the deaths as Participant 013 echoed here:

People’s lives were lost and there was nothing we could do about it. I still have nightmares to this day. There’s one that’s a recurrent one where I come into work, and all the residents are there that died. I see them all sat there, and they turn around and say ‘you let us die’, and I know I didn’t let them die, but that’s how it feels that we didn’t get the help. We didn’t get the help to help these residents and all we could do was just sit there with them while they died. P013

Participant 021 described how they were ‘left’, which further contributed to the challenges of providing appropriate end-of-life care:

There was no support for us at all, there was nothing for any of the staff or certainly the people managing the situation. We were completely and utterly left on our own to it …. P021

Overall, however, there was a lack of formal support for those who had provided end-of-life care during the pandemic, both in an emotional and practical sense.