Principles of end of life care

In the UK, end of life care is widely understood as care provided in the last hours, days, weeks and months of life. End of life care should be considered for anyone with a progressive, life-limiting condition who is identified as potentially being in their last year of life, irrespective of diagnosis. This applies not only to people with a cancer diagnosis, but also to those long-term and life-limiting conditions such as heart failure, chronic obstructive pulmonary disease, multiple sclerosis or motor neurone disease (Department of Health and Social Care (DH) 2008, Welsh Government 2017, Healthcare Improvement Scotland and NHS Scotland 2020).

When delivering end of life care, the same principles apply in acute and community settings. These principles include putting the patient at the centre of care and providing holistic, individualised care not only to patients, but also to those close to them. National standards emphasise that all health and social care staff involved in providing end of life care are expected to deliver holistic and individualised care to patients and their families and informal carers (DH 2008, Welsh Government 2017, Healthcare Improvement Scotland and NHS Scotland 2020).

Optimal end of life care involves the timely identification of an individual’s psychological, physical, social and spiritual needs, as well as timely care planning to adequately meet those needs (DH 2008, Health Education England 2017, Healthcare Improvement Scotland and NHS Scotland 2020). A proactive approach to the early identification of patients’ needs can be guided by tools and indicators such as those provided by The Gold Standards Framework Centre CIC (2011) or the Primary Palliative Care Research Group (2016).

It is crucial to determine the person’s wishes and preferences regarding their treatment and their place of care – such as at home or in a hospice or hospital – and these can be ascertained by conducting advance care planning and ‘ceilings of care’ discussions with the patient and their family. The aim of these discussions is to establish in advance how and where the person would like to be cared for, particularly in case they reach a point in the future where they are no longer able to express their wishes or make decisions about their care. Willis and George (2020) emphasised the benefits of advance care planning for achieving person-centred care, asserting that, if properly done, it can uphold the principles of respect for personhood, autonomy, confidentiality and consent, which are inherent to healthcare.

Advance care planning discussions require skills and compassion on the part of healthcare professionals. Various models can be used, for example the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) (Resuscitation Council UK (RCUK) 2021). The ReSPECT process produces individualised recommendations for future care and treatment, which may or may not include a ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) order (RCUK 2021).

Adapting to the COVID-19 pandemic

End of life care in the community is usually provided by community staff nurses under the leadership of a district nurse for people living in their own home or in a residential care home, or by nursing home nurses for people living in a nursing home. Nurses providing end of life care in the community work as part of a wider team and are supported by hospice-at-home services, hospice nurses and some specialist nurses, depending on local commissioning arrangements. Many of the challenges arising from the COVID-19 pandemic for end of life care provided by nurses in the community will be the same for other nurses in other care settings.

As the pandemic unfolded in the UK and worldwide, those providing end of life care in the community have had to adapt to, and accommodate, COVID-19 policies and procedures, including the additional complexities that have resulted from PPE requirements, social distancing and the shielding of those who are most vulnerable to the disease (Healthcare Improvement Scotland 2020, Public Health England (PHE) 2020). In April 2020, the NHS called for person-centred, holistic and individualised end of life care to be maintained throughout the pandemic across the UK (NHS England and NHS Improvement 2020).

Many people who die with or of COVID-19 have co-morbidities such as diabetes mellitus, heart disease, dementia and stroke (Healthcare Improvement Scotland 2020, Raleigh 2020), which potentially increases the complexity of symptom management. The National Institute for Health and Care Excellence (2020) has published guidance on managing the symptoms of COVID-19 in patients at home, including those at the end of life, while NHS Scotland has reiterated the importance of advance care planning, including discussions about ceilings of care, advance decisions to refuse treatment, and cardiopulmonary resuscitation (CPR) in the context of the COVID-19 pandemic (Healthcare Improvement Scotland and NHS Scotland 2020).

There is an urgent need for further research to improve the understanding of how primary care and community nursing services, alongside hospices and community specialist palliative care providers, have continued to provide end of life care during the COVID-19 pandemic. The Centre for Evidence-Based Medicine has published the outcomes of a rapid review on the role and response of primary care and community palliative care nursing during epidemics and pandemics, identifying a lack of evidence on how community nurses can most effectively adapt end of life care service provision in such circumstances (Mitchell et al 2020). The rapid review concluded that important factors in a successful response include (Mitchell et al 2020):

Challenges and resources

The effect of the COVID-19 pandemic on community teams has yet to be fully explored, but open discussions have begun about the challenges experienced by nurses providing end of life care in community settings. In April 2020, the District and Community Nursing Forum of the Royal College of Nursing (RCN) surveyed its members on the challenges they were experiencing, primarily exploring the practical effects of COVID-19 such as PPE requirements (Green 2020). Support with mental health and burnout was one of the support needs expressed by survey respondents (Green 2020).

Challenges for district nurses have included having to ensure that patients remained at the centre of care and that community staff nurses felt supported and were appropriately supervised. Nurses working in the community have had to work on their own to minimise the number of contacts patients were having with healthcare professionals. In addition, they have often had to act as a ‘go-between’ between patients and families during times when social restrictions were keeping them apart (Trueland 2020). Such challenges will have taken a physical, psychological and emotional toll on community staff nurses and district nurses; however, beyond anecdotal evidence, the extent of this toll has yet to be evaluated. It could also be suggested that the pandemic has prompted an increase in discussions regarding death and dying, the need to plan for the end of life, and the benefits of advance care planning. This will hopefully support compassionate care through an improved understanding of what is important to patients and families.

Various resources on end of life care are available that can support nurses working in the community, such as the NHS England (2018) guidance on advance care planning for people with dementia. Finch (2020) explored the legal aspects of care during the COVID-19 pandemic for community nurses and offered a useful review of issues such as duty of care and patient confidentiality, notably when there may be a risk of infection being passed on to others. Further valuable resources have been developed by Real Talk – a team of researchers, clinicians and educators who have developed short guides to assist healthcare professionals in communicating with patients and families in the context of the COVID-19 pandemic (realtalktraining.co.uk/category/covid-19). For example, Real Talk offers a telephone call checklist for healthcare staff who need to communicate the death of a loved one (Parry et al 2020).

Barriers to communication

At the time of writing, there has been little research on the effects of wearing PPE on communication with patients, families and carers. However, it has been suggested that PPE – notably face masks – inevitably creates a barrier (Carter 2020a, 2020b). The need to wear PPE during the COVID-19 pandemic has prompted nurses to use alternative strategies to express compassion and show support, for example through increased use of eye contact and by making it obvious that they are smiling behind their masks, since this will show in their eyes (Hombach 2020).

Communication issues resulting from the need to wear PPE are likely to be particularly acute in patients who have cognitive impairment or dementia, since they may experience confusion, anxiety or distress when receiving care from a community nurse wearing a face mask and full PPE (Social Care Institute for Excellence 2021). Another patient group that may be particularly affected is people with hearing impairment, who often rely on non-verbal cues, facial expressions and lip reading to communicate (Deaf Action 2020). This has led to the development of face masks with a clear window through which the wearer’s face can be seen (Hackett 2020a).

Nurses often use touch in their therapeutic relationships to express empathy or compassion or provide a soothing presence. Another disadvantage of PPE for nurses and patients is that touch is experienced differently with – and from – a gloved hand. Furthermore, if community nurses are not conducting a clinical procedure that requires them to be close to the patient, they must adhere to social distancing, which reduces opportunities to express empathy through touch (PHE 2020, Hackett 2020b).

Anticipatory prescribing

In end of life care, anticipatory prescribing is typically used to provide prompt relief of distressing symptoms such as pain, respiratory tract secretions or agitation – which can be reduced by administering, for example, morphine, hyoscine butylbromide or midazolam, respectively. Anticipatory prescribing of injectable medicines in advance of clinical need is an established practice in community end of life care (Antunes et al 2020). At the beginning of the COVID-19 pandemic, healthcare service providers and hospice-at-home organisations were concerned about a potential shortage of medicines and syringe drivers to manage patients’ symptoms at home. As a result, medical and non-medical prescribers have had to consider alternative routes of administration for certain medicines; for example, the buccal, subcutaneous or sublingual routes instead of the intravenous route (Antunes et al 2020, Bowers et al 2020, Lam et al 2020).

In spring 2020, Antunes et al (2020) surveyed 261 multi-disciplinary team members – palliative medicine consultants, GPs, palliative care specialist nurses, general community nurses and others – about the challenges of anticipatory prescribing for end of life care in the community during the COVID-19 pandemic. They identified concerns about medicines availability and the changes to administration routes made to enable administration by family carers (Antunes et al 2020). Bowers et al (2020) discussed anticipatory medicines and alternative routes of administration, commenting on the possible need to have family carers administer medicines via the buccal, sublingual, rectal or subcutaneous route during the pandemic. However, they emphasised that family carers who are willing to take on that role need to be adequately trained and supported with access to 24-hour telephone advice (Bowers et al 2020).

Before the COVID-19 pandemic, Wilson et al (2018) noted that families and informal carers of patients dying at home often felt under pressure to undertake tasks in relation to medicines management for which they did not feel prepared or confident. In addition, the evidence base regarding anticipatory prescribing was deemed insufficient and further investigation was deemed to be urgently required (Bowers et al 2019). While adapting anticipatory prescribing has proven beneficial in the context of the COVID-19 pandemic – which has warranted rapid innovation – the extent to which it has occurred and its clinical efficacy require further examination (Antunes et al 2020).

Verification of death

Verification of death is an essential task for nurses who provide end of life care in the community, since it is part of holistic care, which includes care after death. Verification of death is not a mechanistic task but one that requires sensitivity and compassion. It is essential that nurses understand the legal implications of verifying a patient’s death, comply with local policies and understand any changes to their role in verifying death in the context of the COVID-19 pandemic (Churcher and Dowie 2020).

Nurses can only verify a death if the person was expected to die and had a DNACPR order in place (Churcher and Dowie 2020). When there is no DNACPR order in place, the official guidance states that ‘there should be an initial presumption in favour of CPR’ (British Medical Association et al 2016). There are circumstances where a decision not to perform CPR in the absence of a DNACPR order may be appropriate, but it is beyond the scope of this article to discuss this in detail. Additional information on certification of death and CPR can be found in Churcher and Dowie (2020) and Ormandy-Brooks (2020), as well as in official guidance from various organisations (British Medical Association et al 2016, Hospice UK 2020, Nursing and Midwifery Council 2020, RCN 2020, RCUK 2020).

If a nurse with the necessary training is not available to verify death, it is suggested that a non-registered professional or a layperson can confirm the death to a GP (DH 2020). However, this may negatively affect the family’s sense of loss, grief and bereavement due to the fact there is no one to confirm their relative’s death, to offer care and compassion or to provide practical support with washing the body (last offices).

During the pandemic, it has become clear, as the authors of this article have noted in their clinical practice, that nurses working in the community require further training in verification of death. Some NHS and hospice-at-home employers – for example, Marie Curie – have started offering additional training to nurses about verification of death and its legal implications.

Bereavement support

PHE (2021) guidance for arranging funerals during the COVID-19 pandemic states that bereaved people must be treated with sensitivity, dignity and respect. Not being able to attend a loved one’s funeral due to social restrictions will have compounded the grief of many families. It will be some time before the full psychological and emotional consequences for grieving families become clear, but evidence is beginning to emerge which demonstrates that the pandemic has negatively affected the mental health of adults in the UK (Marshall et al 2020) and has changed the way people live and die (Nyatanga 2020).

Johnson et al (2020) explored the priorities for palliative care research during the COVID-19 pandemic and identified four themes, one of which was an increase in the sense of loss, grief and bereavement experienced by families and carers. Informal care networks have been under considerable strain during the pandemic due to reduced professional support and respite opportunities (Johnson et al 2020). One bereavement survey undertaken by the charity Sue Ryder (2020) found that more than half (55%) of 503 bereaved people surveyed in the UK felt that their loved one’s death had become ‘just a statistic’. The survey also identified that the most significant challenges for respondents were feeling isolated and alone when grieving (62%) and feeling that their grief was being forgotten amid a global crisis (59%) (Sue Ryder 2020).

Harrop et al (2020) conducted a narrative systematic review of system responses to mass bereavement following human-made and natural disasters with the aim of informing service provision and policy during the COVID-19 pandemic and beyond. The review emphasised the unique nature of the situation, since none of the six studies it included had considered pandemics. Nonetheless, it identified several features of an optimal response to mass bereavement including (Harrop et al 2020):

Conclusion

Community end of life care nursing has undergone significant changes as a result of the COVID-19 pandemic. New working practices, which usually take several years to emerge and become embedded in health and social care services, have been adopted in a matter of months or even weeks, potentially leading to permanent changes. While the pandemic has generated several challenges in relation to nurses’ therapeutic relationships with patients, it has also prompted adaptation and innovation in clinical practice. At the time of writing, there remains little research on how nurses, patients and families have been psychologically and emotionally affected by the pandemic and on how nurses have adapted the provision of end of life care in the community. Further research into these areas is required to inform future care planning and service provision.