Perspectives on dying from COVID-19 part 3: Swimming against the tide

Part three in this exploration of themes from frontline care staff during the pandemic

Authors: Dr Simon Tavabie – Royal London Hospital, Dr Katie Ball – Marie Curie Hospice Hampstead, Dr Rory Carrigan – University College London Hospital, Dr Stephanie Lister-Flynn – St Catherine’s Hospice Crawley

As we enter the new year we’re offered a prompt to take stock and reflect on the 12 months that have just gone past. 2020 has given us lots to talk about, most notably COVID-19 and the wholesale changes to our personal and professional lives that it has forced. Earlier this year we went out to colleagues caring for patients dying from COVID-19 across the country to gather perspectives on how the pandemic had affected them, their practice and their local areas in an attempt to capture that moment in time (Perspectives 1 & 2). Now as we look forward into 2021, which will doubtless bring new challenges, we have again conducted structured interviews with colleagues around the country to see what’s changed since Spring.

Question 1: How does it feel where you’re working at the moment?

“Tense” says Rebecca – a palliative medicine consultant in Bolton. “We get a trust update three times a week with the total number of patients with COVID-19 in the hospital. You open it with trepidation and then your heart sinks as the numbers continue to rise”. This feeling seems to be shared across the acute sector with a junior doctor in a London hospital telling us, “As you walk into work you alternate between feeling really anxious about what might happen today and feeling completely hardened to it, trying not to remind yourself about how bad things have become”. Certainly in the hospital setting, Rebecca reminds us that, “Teams have never been surrounded by this amount of death before. I bumped into one of the Acute Medics coming off MAU, his face was sombre, so I enquired into how he was feeling. He said ‘it’s all just death in there’”

Sharmila, a gastroenterology consultant in Portsmouth, tells us of the changes to practice she’s had to make, “I haven’t lived through any wars, but I can’t think of anything else in my lifetime that has changed almost all aspects of the way we live and work”. These changes come at a cost and “it sometimes feels like I’ve stopped doing good old fashioned medicine and am just ‘processing’ patients along the safest ‘virtual’ route”. This is something Thomas, an oncology registrar in London, has also felt, “It’s interesting having the flexibility now to offer face-to-face appointments… the number of patients who have said to me, I’m so glad you brought me in to see you, I just wanted to see somebody who’s looking after me… I think only practicing remotely takes away that personal approach that we have as clinicians looking after people… and they feel like no one is really overseeing things”.

Sharmila tells us about a “sense of weariness”, something mentioned by a lot of our contributors. Haz, an anaesthetic CT2 in Bedfordshire tells us “overall people feel tired and kind of fed up of how all the rule changes are affecting work and the efficiency of work”. Nicola, the lead clinical nurse specialist for a palliative care team in London also comments on this while saying the “continued sense of valuing staff and putting practical measures in place to support this” is really helping. Feeling supported isn’t ubiquitous however, with our junior doctor in London telling us “It feels as though the goodwill has gone, no more clapping, no more following the rules, no more donations to the frontline staff. We’re still here, still struggling but neither the management or the public have been able to maintain the level of support we saw in the Spring”.

Question 2: What challenges are you facing?

“Dealing with constant change can be exhausting” says Nicola in London, a sentiment echoed with our junior doctor who tells us, “Admitting that you’re exhausted, tired, burnt out doesn’t go with the wartime mentality we’ve been encouraged to adopt. A lot of staff need support but don’t know where to turn”. Now that many staff are needing to shield, isolate following contact and isolate with the illness, teams are stretched and it’s difficult to provide the care they would want to. Rose, a microbiology registrar in York, tells us that often staff working in stretched services default to diagnosing COVID-19, causing “delays to other diagnoses. People aren’t able to think about the other conditions that could cause similar presentations”. Having completed her core medical training through the pandemic, she remembers being on wards earlier in the year where “it’s hard to recognise when a patient is dying with the virus as opposed to deteriorating from something reversible” which poses the challenge of what to say to loved ones, especially where communication is more difficult.

Rebecca in Bolton tells us that her hospital serves quite a large Muslim faith community and that in normal times they are used to supporting patients in meeting their spiritual and cultural needs. “Some Muslims believe in having as many people as possible around someone’s death bed to pray and the fact we are only allowing two visitors at the end of life is very distressing for them. Having been present for a huge virtual Muslim death bed, it was a very moving moment. I’m not ashamed to say I cried, as it was such a distressing, but beautiful moment and I felt privileged to be present”.

Haz tells us about the challenges communicating between colleagues “human factors play such an important part in our work and now we’re all wearing the respirator style mask that are really difficult to hear anyone talk through”. PPE is discussed by most of our contributors as a challenging thing to adapt to, while also holding the worry that one might not be wearing the right equipment for the task at hand, putting staff and patients at risk.

Sharmila tells us of the impact on endoscopy which “has been one of the hardest hit areas in the ‘non-COVID’ hospital stream given the risk around aerosol generation… my heart sinks when I encounter a patient with a cancer that could have been picked up earlier had the pandemic not stymied endoscopy services and had the fear of coming to hospital not been so strong in many patients. These instances are now, sadly not uncommon”. Thomas also speaks of the fear of COVID-19 in his patient group “I think the thing that I have to remember is that a lot of my patients…have a reasonably short prognosis. So for me to advise them not to see loved ones will make a big difference to their quality of life. Especially when some of them may not actually have a prognosis longer than months. So I think being pragmatic in the advice about this is the approach that I’ve adopted. And I have said to people that it’s important to protect themselves from the risks of catching coronavirus, but it’s also important not to underestimate the impact of keeping themselves away from their loved ones would have on that mental health and their overall wellbeing.”

Question 3: What’s helping?

Rebecca in Bolton tells us of the ongoing changes to working in her integrated hospital/community palliative care team “We’ve found being flexible and getting rid of organisational boundaries is key”.

Rose in York tells us how helpful both national and local guidance on “what investigations to do…how to help with symptoms…how to have difficult conversations with families over the telephone” (such as this from the Chelsea and Westminster team) has been. Nicola explained that, “In the first wave there was a sense of underlying fear as we were unsure of what was to come. We are now better armed with the experience, knowledge and resources. The use of Microsoft Teams, zoom etc has been a real plus in many ways. It has encouraged more creative ways of teaching and communicating with one another”.

Support for staff has been varied through the year but our junior doctor in London tells us how useful regular debriefs have been for offloading and activities like raffles and the big departmental medical Christmas quiz. They go on to tell us that he feels the most helpful thing remains “the sense of camaraderie between staff” and Thomas tells us that he feels this with patients as well, “that we are all in this together”.

Thomas tells us that “the fact that all the staff where I work are being tested regularly, so that fear that we could unwittingly give it to our vulnerable patients is slightly less”. A lot of our contributors felt the rapid development of large scale testing and the promise of the vaccination programme was helping morale. Sharmila put it very clearly, “News of the vaccine filled me with hope and promise, although I know that we need to have realistic expectations of it. It also reminded me of how resilient the human race is and how science will ultimately triumph!”.

Question 4: Have you noticed any emerging themes in caring for people dying with COVID-19?

 The resounding answer from those of our contributors caring for people dying with COVID -19 is around uncertainty. Rebecca – “In those sick enough to die, it is very difficult to predict who will die or not”, Rose remembers similarly “it’s difficult to assess their trajectory, they deteriorate quickly and often quite symptomatically”. Now that visitors are allowed into some hospitals when patients have been recognised as dying, this poses a particular challenge “we are trying to bring visitors in earlier so contact is meaningful” but as Nicola reminds us of the challenges with, “Confusion about the visiting policy across the hospital…and inconsistency in practice”.

Symptoms wise, Rebecca tells us of the “silent breathlessness” where patients “appear very tachypnoeic, but when questioned says they don’t feel breathless” leading to uncertainty around the role for medication like opioids. She describes a delirium that is less responsive to midazolam and so one of the challenges she has faced is “getting wards comfortable using levomepromazine” especially at higher doses when this is outside their normal practice. In contrast, Haz tells us of the deaths she’s witnessed in the controlled environment of the intensive care unit being quick and relatively uncomplicated when patients have progressed to multi-organ failure states.

Our contributors talked of the distress faced by the other patients on wards, in bays or nearby when someone is dying symptomatically and how this then impacts upon their care. “One patient who witnessed another’s agitation whilst on CPAP, consequently refused to have CPAP on himself when he needed it. We reflected that in normal times patients would witness another’s death, but they might be able to detach themselves from it, as they will likely have had a different condition or illness. On the COVID wards though, they are all there for the same reason and the risk of their own death is there for them all to see”.

Question 5: Any advice for people across the country?

Rebecca – “I think I will say something that a lot of my patients say to help them cope, which is often true; ‘don’t worry, there is always someone out there worse off than you’. Focussing on the positives is a real asset to me at the moment… Be kind to those that fight against the restrictions or who don’t believe in COVID-19. They are likely the ones worse off than ourselves, trying to protect themselves the only way they see how”

Rose – “One of the more positive elements of working in the pandemic was how I felt that we worked really well as a team and communicated and shared ideas and tried to figure out solutions to problems. And there’s been lots of support from both doctors and other healthcare professionals and nursing staff to help support and care for patients”

Haz – “I guess the most important thing is to keep families involved in the conversations as much as possible. I think we have to remember that patients and relatives are terrified of COVID from the coverage on the news and in the media, especially when they don’t understand a lot of what you’re talking about in ITU etc… I think when people feel they have a grasp of the situation, it makes it easier for them to manage and it makes it easier to feel involved with what’s happening”

Thomas – “I think it’s really important to take a pragmatic approach for our patients, especially those who have incurable illness. We can’t replace face-to-face contact when it’s required. So breaking bad news, giving information, allowing the patients time to meet the team looking after them is vitally important… and it’s something that really cannot change”

Nicola – “The importance of robust team working is necessary on so many levels. Self-care is integral to healthy and productive functioning. This will take different shapes and forms for each individual but it is taking the time and energy to consciously think and plan what works for you”

Junior doctor in London – “Take care of yourselves. Wash your hands, cover your face and maintain your space and please stay home if you can”

Summary

Looking to the year ahead we will doubtless face challenges both currently foreseeable and not. Our understanding of COVID-19 has advanced rapidly over the last year with production of research and guidance to help with patient care but significant uncertainty remains. Staff continue to work outside their comfort zones and face stark reminders each day of the severity of the pandemic, trying to support patients as best they can. As we go into the new year the importance of supporting each other, checking in on people who aren’t speaking out as well as those who are, and remembering where we can access support (NHSe, BMA, Samaritans) is so important. 2020 has been a year for trying to focus in on what matters most to each of us and we’ve seen examples of the wonderful and kind efforts of society to support those most vulnerable. We’d like to thank you all, and wish you a happy new year.

Thanks to our contributors who agreed for this to be published:

Nicola Henawi – Lead CNS for palliative care team at the Royal Free Hospital in London
Junior doctor in London contributing anonymously
Dr Sharmila Subramaniam – Consultant in gastroenterology in Portsmouth
Dr Rebecca Lennon – Consultant in palliative medicine in Bolton
Dr Thomas Carter – Specialist registrar in oncology in London
Dr Rose Harrison – Specialist registrar in microbiology in York
Dr Harriet Kent – CT2 anaesthetics in Bedfordshire

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