Providing 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.
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 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 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 (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 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 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.