Part 2: Perspectives on dying from COVID-19: The rising tide

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

Authors: Dr Simon Tavabie, Dr Katie Ball & Dr Rory Carrigan; Marie Curie Hospice Hampstead

In the time following our previous blog post, the news reports of escalating numbers of people dying from the virus, inadequate Personal Protective Equipment (PPE) provision and continued discussions of an impending ‘peak’ for the outbreak has painted a worrying picture. Further conversations with clinicians working to help patients dying from COVID-19 will hopefully provide readers with a diary and a window into the experiences of people working through the pandemic as the tide rises in the UK.

 

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

 

There remains a sense of teamwork across all services. One oncology consultant in the South reported that the ‘wards are very well staffed and supported, juniors pulled from every branch of medicine to help with inpatient work and we’re not full – bed occupancy is at its lowest point for more than 20 years’. An emergency medicine trainee based in London feels that not changing jobs in April has helped; ‘staying on the same job for another four months means we’ve already gelled with the team and already have a feel for the department’. Good communication appears to be a common and reassuring pattern thanks to ‘clear plans with nursing and junior medical staff. We’ve committed to daily proactive updates to family members in the absence of availability of visits’.

 

However, there remains difficulty in reaching out when normal means of communication are lost. Sarah, a community GP and palliative care doctor told us more about her experience, ‘General practice is a lonely job at the best of times, but it feels even more lonely now – I arrive at my desk and don’t see anybody all day, even patients as we reduce our face to face contact in an effort to reduce the spread of COVID-19.’​

 

  • What challenges are you facing?

 

One of the most significant challenges in managing patients through the COVID-19 pandemic seems to be in communicating with families and relatives. Restrictions on visitors have complicated admission via the emergency department ‘especially for elderly/confused/non-English speaking patients and often you have to try to muddle through without a collateral’. When patients get to the wards ‘assessment is more challenging and confounded by the environment – completely masked faces, no visitors, less interaction with ward staff due to infection control measures’. Inpatient ‘palliative care support has been via telephone which has been a challenge. It is difficult to fully assess someone via telephone, so this relies on us using advanced communication skills to recognise their needs and provide appropriate support’. Some staff have placed laminated photographs of themselves, with name and designation, onto the outside of their PPE, so that patients can see who the person behind the mask is.

This is something which our community colleagues have also been experiencing and have had to adapt to quickly. ‘Video consulting and telephone consulting require a different set of history taking skills. These modalities feel higher risk, and it’s easy to feel less confident when making diagnoses and establishing plans. There is something very comforting about being able to see and examine a patient!’. ‘We are forced to have advance care planning discussions more, having these potentially emotional conversations over the telephone seems impersonal and less sincere’.

Alongside challenges in communicating with patients and relatives, some systems and their staff, are facing pressures caused by the amount of very unwell people they are seeing. ‘The sick COVID-19 patients are very unwell and our ventilator capacity has been breached a long time ago’. In emergency departments, an already pressured environment, there are ‘constant blue calls throughout the shifts, many of which are for much younger patients than we are used to seeing’. ‘From time to time a case shakes us’. Young, normally fit people requiring intubation or experiencing cardiac arrest has ripple effects through staff in terms of the sheer gravity of the work they are doing, as well as the potential risks to themselves.

‘There is also a constant niggle that patients might be suffering in silence with other problems afraid to come in’. This is a common feeling amongst all specialties, especially within oncology where there’s a feeling that there will be ‘a major influx of later stage cancer over the next few months to face – and it is unlikely that this will generate quite such a broad and supported response’.

  • What’s helping?

 

‘It really makes a difference to know that people are appreciative for what the NHS is doing’, Sarah tells us this is a real boost to morale across all services. Tiffany, a palliative care CNS in London explains that in her department a ‘silver linings board has been created to try to highlight positives in such a negative situation’. It appears that all teams and departments are coming together in novel ways, including video meetings: ‘We’re going to organise an office quiz night as a way to keep everyone in good spirits’. There’s a sense of solidarity working together, in one emergency department in London there’s a feeling that people ‘are coming to work for the social aspect as well as for a job’ and forming close friendships.

 

While everyone has been getting to grips with new electronic platforms, WhatsApp remains a staple for staff communication. ‘In truth, I would say most of the technical knowledge about COVID-19 has come through WhatsApp groups with colleagues’ reports another ED doctor from London. However, there’s a real risk of information overload. Sarah told us ‘the information influx is constant and comes as an assault from multiple forums – I daren’t not read any of it in case I miss something that is vital to patient care’.

 

‘The evolution of technology over a short time period has been incredible – video consulting, Zoom meetings, telephone conferencing with patients and families, the ability to work from home as a GP’ are all potential positive and sustainable changes for the future. ​

 

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

 

One of the greatest sadnesses during this pandemic is that people are unable to have their loved ones with them at the end of life. Usually it is a consolation for them and for us as staff that their family are involved in this process’. One trust has ‘arranged for a number of electronic tablets to be distributed amongst ward areas, including ITU and A&E so families are able to communicate with their loved ones admitted on the ward’. Although this may help in some cases, there’s still a feeling that we’re not meeting the needs of our patients and those important to them.

The palliative care team are finding that due to redeployment of staff to acute specialties ‘those unfamiliar with caring for patients at the end of their life are finding symptom management challenging and are always very grateful for our support’. ‘A lot of COVID-19 patients are quite young and healthy and so the news for them and their family is much more unexpected’. Because of the speed of deteriorations, often caring for this patient group can be troubling; ‘they’re very aware of what’s happening as they go to get tubed. They do not have any loved ones present and they’re often aware that it may be the last thing they ever see. All of this is on a background of all the staff having their faces and eyes obscured with PPE. Trying to express sympathy and comfort without any facial expressions is really difficult’. Although upsetting, ‘the deaths are often quick and comfortable’. Even in the community, ‘with the support of the district nurses, we have been able to ensure that the necessary medication is in place to enable a peaceful passing for our patients’.

A common theme across working environments is the importance of early conversations and shared decision making. ‘There is appreciation from families for the advance care planning that I have carried out for their loved ones- so that when a person has started to deteriorate with COVID-19 (or any illness), there is a plan in place’.

  • Any advice for people across the country?

 

For Healthcare Professionals, although it may not feel like it right now, there will be an end to this difficult period. Keep talking to your colleagues and supporting one another as it is likely everyone is experiencing similar emotions’.

For those at home, you are playing a big part in supporting the NHS. Keep going!’

 

Support the vulnerable people around you. This is an illness that largely impacts the elderly and those with underlying health conditions. They need support with shopping, medication access and avoidance of loneliness as they shield from COVID-19’

 

Exercise! Whether it’s in your home or outside, try and get those endorphins released – for physical and mental well-being’

Summary

 

As the COVID-19 pandemic takes hold in the UK it’s clear that our colleagues are banding together to combat this. People are acting outside of their comfort zones, supporting each other and working in pressured, sometimes new environments and despite this, still finding solutions to care for their patients in this difficult time. Despite being ‘physically distant’, we as healthcare professionals and as a wider society are talking to each other more, offering a sense of community and learning a new way of becoming socially connected.

 

 

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

Dr Sarah Batty – Doctor at North London Hospice (Inpatient & Community) & GP in Leicestershire

Tiffany Young – Macmillan Palliative Care Clinical Nurse Specialist at the Royal Free Hospital

Two London Emergency Medicine Doctors and an Oncology Consultant in the South of England who contributed anonymously

 

 

 

 

 

 

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