Perspectives on dying from COVID-19: Waiting for the storm

Authors: Dr Simon Tavabie & Dr Katie Ball   Marie Curie Hospice Hampstead

Today we find ourselves in the middle of a pandemic. COVID-19 has swept across the globe with thousands dead, more seriously unwell, and a sense of anxiety and uncertainty within healthcare professions that is unlike anything we have seen. As the course of the viral illness becomes clearer, management guidelines are being produced, including around the topics of supportive and palliative care. To understand the real life implications of working on the front line we conducted a series of short structured interviews with clinicians across the UK in a variety of healthcare settings, discussing their experiences and looking for themes arising from the current COVID-19 outbreak. We hope that quotes from these conversations make for an accurate description of our current time, and may be of interest now and in future.

 

1)     How does it feel where you are working at the moment?

 

When talking to people working within the NHS at this time, there’s a real sense of camaraderie, but also a concern for others’ wellbeing. In the hospital, Phil, a palliative medicine consultant in London feels that ‘the morale, particularly around the medical staff is high’.

 

‘They’ve really engaged, they’re all in it, people who were in non-acute specialties as well as acute have said I’m coming back I’m coming back’. Phil also tells us of those unable to take up frontline duty working on supporting their colleagues and coordinating efforts. Down in an acute trust in Brighton, Ollie says ‘it feels chaotic, but normal’ and there’s a focus on trying to keep the hospital functioning.

 

There is however, a fair amount of concern about what’s to come. Two GPs in North Yorkshire highlighted this by telling us ‘the tide goes out before the tsunami hits, that’s where we are at the moment’. While energy has been put into preparing secondary care, there’s a feeling that general practice has been ‘left to wing it and deal with it’.

 

Even in secondary care there’s concern about how the staff and systems will cope. As Jess, a CNS in London says, there’s a great deal of ‘fear of the unknown’. Talking to colleagues, Phil tells us he’s found ED staff who are ‘particularly concerned about the emotional wellbeing of their medical and nursing colleagues’. ‘ITU is a place of frequent death if that’s suddenly all you’re going to see, and you’re not used to that then clearly some of us will be adversely affected’

 

2)     What challenges are you facing?

 

Key challenges within the context of the COVID-19 outbreak are the necessary restrictions to face-to-face contact for clinicians and their patients, alongside staff needing to adapt and ‘step outside their comfort zones’.

 

Caring for people dying with COVID-19 is made more difficult by the feeling that ‘people don’t recognise dying and they don’t recognise what we (palliative care) do. The patient is in the middle of all of it, and gets much better care if they can access both’. But on a simple level ‘I think the symptom control bit should be relatively straight forward’.

 

And on a practical level, Jess tells us her challenges are around ‘upskilling super-quick, which highlights need for further palliative medicine education and being confident to utilise PRNs and drivers’. We need to be ‘ensuring enough stock is in the drug cupboards. Stocking the wards more like you would do at a hospice’ and Phil adds: ‘making sure that there’s availability of death certificates and that people are up on how to do that, because not every doctor looks after people who die’.

 

Our GPs felt that ‘the thing around COVID, particularly with the patients who are more frail, is really around risk management, in whether seeing them and bringing something into their environment is putting them at more risk, than managing them remotely, especially in nursing homes’.

 

‘Telephone triage is an increasing task and it’s been a real step up, particularly in out of hours clinics’ and that it can be ‘particularly challenging without even a set of basic physical observations. A few of the younger patients have been able to do this through fitness trackers and devices (Fitbit, Galaxy phones can take oxygen saturations).’

 

In the hospital this poses similar challenges with Phil telling us that ‘it’s the junior medical staff or the nursing team phoning the patient’s nearest and dearest, to say your husband, your wife, your mum, your dad, is dying… This isn’t something we do, even in palliative care. It’s hard enough face to face finding the right words, but on the telephone…’

 

3)     What’s helping?

 

People are finding support from different places. In the hospital Ollie feels that ‘people are changing, and increasingly recognising the importance of palliative medicine’. Our GPs have noticed that a ‘lot of people are turning to medical social media for support, sharing practice and to see what else is out there’. They do also note that seeking advice here, rather than through official channels can be a ‘double edged sword’ , with a lot of opinion and the possibility of ‘falling down the rabbit hole’. Fake and inaccurate information seems everywhere.

 

Throughout the settings our staff are working in, there is a feeling of gratitude and appreciation for the support they are receiving from the public and senior figures. ‘The public have been so kind and people are really going out of their way to help us a profession, and that’s so good for morale. I hope the public realise what a huge impact this has on us’. Phil’s finding that ‘showing that people are cared for, so organising the tea and the coffee and the scoff, is as important as providing a bit of guidance about managing shortness of breath, if not more so’.

 

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

 

The theme of Advance Care Planning appears in all our of conversations. Everyone involved talked about how important it was, and our GPs felt that ‘having ‘the conversation’ with people about what to expect and making plans early is happening more now and I think is so important that we press on with that, in the quiet before the storm’.

 

This appetite for talking to people about what’s to come was coupled with a fear that the media attention has already affected people in a way that may make these conversations more difficult. ‘I think there’s quite a lot of terrified older people at the moment, who would find a pragmatic up front conversation really distressing. I’ve already encountered some terrified older people who won’t go to A+E for anything’.

 

Interestingly, talking to those who are working with patients dying from COVID-19 , there is a feeling that the practical symptom management and conversational task is very similar to what those in palliative care do already, day to day. Ollie feels that ‘the most important thing is still to recognise that people are dying, or are at risk of dying soon. Even just recognising the possibility makes it much easier for doctors and nurses to talk about this as things progress and, if things are deteriorating, have frank conversations and prescribe the right meds.’ Ollie feels we should ‘palliate soon and palliate often’.

 

While this may be the right approach, our GPs raise the issue of logistics. ‘There’s already a shortage of staff to give injectable medications and few other options to choose from’. ‘We’ve been looking at what stock there is of alternatives to injectable medications for the management of dyspnoea and agitation’. This is coupled with the harsh realities of this disease causing so much devastation, and what this will do to people’s morale. ‘If the government does what’s needed and orders more syringe drivers or opioids… I think the public may struggle to hear that, but it is as important as the other frontline stuff’.

 

5)     Any advice for people across the country?

 

Phil – ‘In any setting, communication, education, training and reassurance of the staff, and outlining that common purpose wherever you are, be it a community team, a care home, a general practice, a hospice, a teaching hospital or a district general hospital, and focus on welfare’ ‘ At one in the morning when there’s nowhere to get any food because everything’s shut, if it’s there, with a bit of love, that’ll go a long way to keeping people going, and making sure they come back in on the next night and the next one’

 

Ollie – ‘For patients and for staff: write it all down, talk to your friends and family, make your wishes known, follow all the public health advice that’s everywhere, and stop faffing around mywishes.co.uk is a fantastic app to help with writing about future wishes etc.’

 

Jess – ‘Get prepared as much as you can do, keep your cool, stock up on kit, your drugs and water for injection. Look into adapting your practice, I’m looking into sourcing iPads so relatives and loved ones can video call in, try to dispel myths around syringe pumps and that we are likely to run out of these so to try and think of alternatives’

 

GP – ‘It’s difficult to tell how things will go but having conversations with colleagues and patients about how things might go and planning seems like a sensible approach.’

 

Summary:

 

The COVID-19 pandemic poses lots of challenges to those working with patients. Some are existing challenges, such as advance care planning and recognition of dying. Some are newer ground, such as the risk of exposure associated with face to face contact and this necessitating more phone and video consultations. People seem to be banding together with a sense of common purpose, but have a lot of anxiety around what might come next. There’s a lot of effort going into supporting staff morale and wellbeing and it seems the simple things have the biggest impact. ‘Knowledge, skills, altruism, etc amongst clinicians remain very high. If people are valued and spoken to in a supportive and humane way, then that goes a long way’.

 

‘I was saying to someone yesterday that we might look back on this and say that this was the best time, which is terrible in a way. I’m kind of minded of reading peoples’ experiences of WW2 where people look back at it and smile, even though they got bombed and shot at ,and people died. The best of times and the worst of times’.

 

 

Thanks to contributors, who all gave their consent for this to be published:

Dr Ollie Minton – Palliative Medicine consultant at Royal Sussex County Hospital Brighton

Dr Philip Lodge – Palliative Medicine consultant at Royal Free Hospital and Marie Curie Hospice Hampstead

Jess Foreman – Clinical Nurse Specialist in Palliative Care at St George’s Hospital

2 GPs working in North Yorkshire (contributing anonymously)

 

 

 

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