PALLIATIVE CARE

End-of-life care during COVID-

19: opportunities and challenges
for community nursing
Ben Bowers, Kristian Pollock, Crystal Oldman, Stephen Barclay
Ben Bowers, School for Primary Care Research PhD Student and Queen’s Nurse, Primary Care Unit, Department of Public
Health and Primary Care, University of Cambridge
Kristian Pollock, Professor of Medical Sociology, Nottingham Centre for the Advancement of Research into Supportive, Palliative
and End of Life Care, School of Health Sciences, University of Nottingham
Crystal Oldman, Chief Executive, Queen’s Nursing Institute, London
Stephen Barclay, GP and Senior Lecturer in General Practice and Palliative Care, Primary Care Unit, Department of Public
Health and Primary Care, University of Cambridge
bb527@medschl.cam.ac.uk

P
roviding person-centred end-of-life care at home and
in care homes during the COVID-19 pandemic has
been challenging. These challenges extend
beyond
the interpersonal communication barriers created by
wearing personal protective equipment (PPE) for infection
control.Visors and facemasks make it harder to hear soft
voice tones or read facial expressions, which are key tools in
empathetic communication.Traditional models of care,
based on predominantly face-to-face multidisciplinary
clinical consultations, have been radically overhauled in the
UK and other countries worse affected by the pandemic
(Antunes et al, 2020; Costantini et al, 2020).The
unprecedented rapid adoption of technology, including
video and telehealth consultations, alongside virtual ward
rounds and online team meetings, reduces infection risks
and may have the advantage of enabling faster access to
clinical advice (Powell et al, 2020). However, concerns that
health professional home visits would reduce has led to an
increased focus on care provision by family members,
including, potentially, the administration of end-of-life care
medications (Antunes et al, 2020; Johnson et al, 2020). The
pandemic has imposed massive stress on care resources,
and the changes in healthcare service delivery after
COVID-19 look set to be substantial (Antunes et al,
2020; Kasaraneni, 2020). New models of care delivery
have also created opportunities for nurses supporting
people in community settings to develop their role and
skills.
care delivery have relied on rapid assessment of the limited
evidence concerning the different options available and
their respective risks (Mitchell et al, 2020; Sutherland et al,
2020).While GPs and specialist palliative care nurses have
been able to move to predominantly remote consultations,
district nursing teams have continued to provide face-to-
face care for patients needing support (Green, 2020; Green
et al, 2020; Royal College of General Practitioners, 2020).
Some primary care teams are trialling video-based GP home
visits when district nurses are with patients, to enable joint
assessments (Macdonald et al, 2020). There are, and will
remain, times where patients, family caregivers or nurses
working in the community value or need face-to-face
medical input (Bowers et al, 2020b). Robust local systems
should be in place during the pandemic to facilitate timely
medical and specialist nurse reviews, including face-to-face
clinical assessments where needed.
The need for community palliative and end-of-life
care has increased since the start of the pandemic. There
has been a substantial rise in the number of people dying
at home, although most of these excess deaths did not
involve COVID-19 (Office for National Statistics (ONS),
2020). Major shifts in policies and procedures have rapidly
facilitated more end-of-life care led by district and care
home nurses. Nurses working in the community have,
thus, acquired newly extended roles.They are increasingly
able to complete Do Not Attempt Cardiopulmonary
Resuscitation (DNACPR) forms, make medical care
decisions with remote GP support and verify expected
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District nursing teams have responded to the pandemic
with considerable flexibility, creativity and pragmatism,
prioritising end-of-life care and rapidly expanding their
caseloads to meet demand for home care (Green et al,
2020). Although there is no shortage of useful practical
guidance and advice (Marie Curie, 2020), there is a
very limited research evidence to guide the provision of
community palliative care during pandemics (Etkind et al,
2020; Mitchell et al, 2020). New guidance and models of
44
deaths during the pandemic (Department of Health and
Social Care (DHSC),
2020a; Royal College of Nursing, 2020). In some areas,
end- of-life drugs can now be prescribed remotely and
direction to administer instructions sent electronically
(Specialist Pharmacy Service, 2020). Unused drugs can be
repurposed in care homes with patient and prescriber
permission
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(DHSC, 2020b). National-level guidance has been put in
place to enable family caregivers to administer end-of-
life drugs where this is appropriate, and they have access
to timely clinical advice (Bowers et al, 2020a; National
Institute for Health and Care Excellence (NICE), 2020;
Poolman et al, 2020) Often, district nursing teams
provide training and ongoing support for family
caregivers willing to take on greater responsibility for
patient care and the associated management techniques
(Bowers et al, 2020a; Poolman et al, 2020).
There are opportunity costs of the new ways of working.
Remote consultations prevent clinical examination and miss
potentially important insights gained from observations made
during face-to-face home visits (Macdonald et al, 2020).
Remote contact between district nursing teams and GPs
are not as productive as face-to-face meetings in building
trusting relationships and in understanding patient and
family caregiver end-of-life care needs (Mahmood-Yousuf
et al, 2008; Bowers et al, 2020b).Trimble (2020)
highlighted that long-term collaborative working
relationships between professionals in primary care may
have been significantly damaged during the rapid
implementation of new ways of working, with some
feeling side-lined in recent moves towards a more
command-and-control style of decision- making.
Thorough evaluations of recent rapid changes in practice
are vital to inform future care during and beyond the
pandemic (Mitchell et al, 2020). Alongside patients and
family caregivers, GPs and nurses working in the
community are ideally placed to help evaluate what
changes have been helpful, unhelpful or need
improvement (Johnson et al,
2020). Research into patient and family caregiver
experience of end-of-life care and the changes in service
delivery must be a priority (Bowers et al, 2020c).
However, the pandemic response also opens up new
opportunities for developing nurse roles in community
settings, streamlining care, learning from what has worked
well and reformulating collaborative working in the future
(Green, 2020). COVID-19 has heightened awareness of
the potential benefits of advance care planning when
conversations are timely and sensitive to the priorities
and concerns of the patient and those important to them
(Hopkins et al, 2020; Queen’s Nursing Institute (QNI),
2020). However, nurses working in the community report
feeling ill-prepared to lead end-of-life care planning
conversations and frequently describe learning these skills
through experience, including trial and error (Griffiths et
al, 2015a; Hadley, 2020). Regardless of experience, nurses
working in the community, including in care homes, need
structured support to develop the required skills and to feel
comfortable instigating end-of-life discussions (Griffiths et
al, 2015a; 2015b; Hadley, 2020). One of the lasting legacies
of COVID-19 may well be that nurses managing care in the
© 2021 MA Healthcare Ltd
community become increasingly skilled and empowered to
lead end-of-life planning conversations and associated care.
Caring for increasing numbers of dying patients at home,
especially those dying from COVID-19, is emotionally
draining and can be a painful reminder of the fragility of
life (Nyatanga, 2020). District nursing and care home nursing
British Journal of Community Nursing January 2021 Vol 26, No 1
PALLIATIVE CARE
teams need protected time to debrief, discuss and reflect
on end-of-life care in a supportive environment (Nyatanga,
2019; Mitchell et al, 2020). It is also important that nurses
have regular breaks from work and make time for the things
that help their own emotional and spiritual wellbeing.
At the time of writing, the UK is approaching a difficult
winter amid a second surge of the COVID-19 pandemic,
with unprecedented pressures on hospital and community
care widely anticipated (Lamb, 2020). There is a danger
that hospital-based care will receive substantial media and
political attention, as it did in the initial surge, with less
attention paid to care provided at home and in care homes,
where a large proportion of end-of-life care will be provided
(ONS, 2020). There is a pressing need to ensure that the
critical importance of this care is recognised, prioritised and
adequately resourced by health and social care government
departments, clinical commissioning groups, community
trusts, charities and professional bodies. We have
only one opportunity to get end-of-life care right, and,
in the insightful words of Dame Cecily Saunders,‘how
people die remains in the memory of those who live
on’. Dying is the last act of living, and effectively and
compassionately supporting patients and families through
their experiences is vital. BJCN
Accepted for publication: December 2020
Conflict of interest: none
Funding: BB is funded by the National Institute for Health
Research (NIHR) School for Primary Care Research. SB is
supported by the NIHR Applied Research Collaboration East of
England (ARC EoE) programme.The views expressed are those
of the authors and not necessarily those of the NIHR or the
Department of Health and Social Care.
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