The demand for end-of-life care at home is rising, and district nurses have a key role to play in delivering this care. Etkind et al (2017) reanalysed the Office for National Statistics death and population data from 2006–2014 and concluded that about 75% of all deaths in England and Wales presented palliative care needs. Extrapolating these data, they estimated that 25–47% more people may need palliative care by 2040 in England and Wales, not only because of demographic trends but also because of the rising prevalence of long-term conditions and multi-morbidity. At present, 47% of people die in hospital, 23% die at home and 21% in a care home (Bone et al, 2018). Reductions in hospital deaths will increase home and care home deaths and will necessitate suitably qualified nursing staff who can provide high-quality 24/7 care in the community at the end of life.
Access to high-quality out-of-hours care in the community is essential if terminally ill patients and their families are to be confident in remaining at home for end-of-life care. The National Survey of Bereaved People (VOICES) (2016) found that 51.8% of respondents perceived that their relative's pain was ‘partially’ or ‘not at all’ relieved at home in the last 3 months of life. Hard-to-access and inadequate out-of-hours care resulting in poor symptom management can cause considerable distress. Patients, families and paramedics called in a crisis may then decide that the hospital is a safer setting for end-of-life care (Gott et al, 2013; Hoare et al, 2018).
The NHS Five Year Forward View (NHS England, 2014) was drawn up in response to the increased demand for healthcare, including for those towards the end of life as the population ages. The importance of increasing the capacity of primary and community care has been repeatedly acknowledged in the various reviews of progress (NHS England, 2016; 2017), but the delivery of increased capacity and workforce capability to manage more end-of-life care at home continues to be work in progress. Indeed, the Queen's Nursing Institute (QNI) (2018) has claimed that the investment in community nursing lacks coherence with the persisting ‘worrying shortages' of district nurses (NHS Providers, 2018). Although district nurses play a critical role in supporting patients at their end of life at home and demand for their help is growing, services are facing funding constraints and a serious shortfall in staffing numbers (King's Fund, 2017).
District nurses' role within palliative and end-of-life care
The Department of Health and Social Care (2012) developed ‘Vision and strategy: an approach to district nursing’, building upon the six Cs (care, compassion, competence, communication, courage and commitment). These guidelines set out how district nurses should lead and support their teams to deliver care in the home, including to those at the end of their lives. While working in partnership, one of the priorities for the district nurses included ensuring that the right staff with the right skills were in the right place, so that all patients received appropriate care. Recognition of what was important to the patient and their family and respecting their preferences, together with patient-focused proactive and flexible care were identified as key to effective care delivery. The vision and strategy guidance emphasised the importance of measuring impact and using this to inform ongoing quality improvement instead of relying solely on district nurse activity monitoring. Interestingly, this guidance never progressed beyond draft format, because it was overtaken by events such as the emergence of the NHS England and various reorganisations to replace the Department of Health and Social Care and its associated agencies. However, this attempt to articulate the role of the district nurse has been built upon subsequently.
Recently, the most influential articulation of the role of the district nurse was set out in the Voluntary Standards for District Nurse Education and Practice (QNI/Queen's Nursing Institute Scotland (QNIS), 2015). These practice standards describe the expertise of district nurses as including the delivery and supervision of high-quality person-centred care with case management of patients with complex needs and prescribing from an appropriate formulary to meet care needs. Leading and adapting care to meet the needs of individuals, together with coordinating end-of-life care, are explicitly identified as a specialism of the district nurse.
A crucial element of high-quality end-of-life care is appropriate symptom management so that discomfort and distress are minimised, if not avoided entirely. The National Institute for Health and Care Excellence (NICE) has issued quality standards to meet the needs of those with advanced disease among the 500 000 dying each year, namely, ‘End-of-Life Care for Adults' (NICE QS13, 2017a) and ‘Care of Dying Adults in the Last Days of Life’ (NICE QS144, 2017b). These standards set out how care should be managed so that dying patients' physical symptoms and psychological needs are fully met and families are supported. The Liverpool Care Pathway (LCP) fell into disrepute in part because it failed to articulate a person-centred care derived from what was important for the patient as advocated by NICE (2017a,b) and Strategic Framework for Action on Palliative and End of Life Care (Scottish Government, 2015). NICE (2017a,b) confirmed that there should be access to prompt, safe and effective care delivered by suitably skilled staff at any time during the night and day when it is needed. For some patients, this involves putting in place a range of medications to relieve end-of-life symptoms.
Nurse prescribing at the end of life
While not neglecting psychological, social and spiritual needs, the alleviation of physical symptoms is a key role of the attending nurse and may require access to new medications or an increase in dosages to achieve the desired comfort (Wilson et al, 2015; NICE, 2015). Some, but not all, district nurses are independent prescribers and may be able to prescribe the appropriate medication without referring to another prescriber, while others will work in close partnership with the patient's GP (Bowers and Redsell, 2017). In many areas, the specialist palliative care team will provide guidance on symptom and side-effect management.
For those dying at home, their informal carers, who may or may not be family members, carry a heavy ‘burden’, which may be increased by complex and ever-changing medication regimes towards the end of life (Sheehy-Skeffington et al, 2014; Payne et al, 2015; Campling et al, 2017). Campling et al (2017) have described the multiple roles that carers continually navigate, including advocate, educator, facilitator, problem-solver, communicator, goal-setter, monitor and reporter. This study's data illustrates the multiple issues faced by carers negotiating the medication supply (and then collecting the new prescription, etc.), through to the patient taking the medication, which may not have been dispensed in the suitable form and route for their changing needs. The district nurse has an important role to play in recognising the roles undertaken by carers and providing the necessary support as capabilities and preferences fluctuate over the dying patient's illness trajectory (Wilson et al, 2018).
Ongoing management of distressing existing and new symptoms during the last few days of life, when the capacity to swallow may diminish, requires proactive care. Indeed, poor synchrony of the appropriate medication supply (medication, dosage and form) in response to need can compound distress (Payne et al, 2015; Rosenberg et al, 2015) and may result in crisis hospital admissions (Wowchuk et al, 2009). Injectable medications are routinely prescribed in the UK, with ‘anticipatory prescribing’ used to avoid any lapses in symptom control, especially during out-of-hours periods (Bowers et al, 2019). Anticipatory prescriptions normally cover four common end-of-life symptoms: pain, nausea and vomiting, agitation and respiratory secretions. This practice is endorsed by both NICE (2015) and Healthcare Improvement Scotland (2016).
Anticipatory prescribing
Injectable medications are typically prescribed ahead of clinical need for administration by district nurses and doctors if symptoms arise in the final days of life. How far ahead of anticipated death drugs are prescribed depends on patient-voiced preferences, the predictability of their terminal illness and the skills of the district nurses and GP in recognising that the patient is approaching death (Bowers and Redsell, 2017). Doctors and nurses report prescribing drugs anywhere from hours and days (Wowchuck et al, 2009; Faull et al, 2013) to weeks (Perkins et al, 2016; Bowers and Redsell, 2017) before death. NICE (2015) guidance recommends that suitable drugs and routes are prescribed as early as possible. However, patient preferences must be adequately explored, and some may view anticipatory prescribing as an unwelcome indicator of impending death (Bowers and Redsell, 2017). Conversations regarding anticipatory prescribing need to be handled with care and sensitivity.
There are some key safety considerations that need to be taken into account in anticipatory prescribing. There is a potential for drug misuse, especially as opioids are often prescribed and dispensed. Particular caution is needed if there is a history of drug abuse in the household (Faull et al, 2013). Medications can remain in homes for extended periods of time, and prescriptions need reviewing regularly to ensure that the drugs and doses remain clinically appropriate. Once medications have been prescribed, permission has been granted to use them based on certain clinical indications, and the prescriber (often the GP) remains accountable for their use or misuse (British Medical Association, 2019). The administration of anticipatory medications also raises safety concerns for nurses (Bowers et al, 2019). Wilson et al (2015) found that district nurses and nursing home nurses did not want to administer the medications unless it was clear that the patient was dying, and they were mindful of the need to balance the achievement of effective symptom control with the avoidance of over-sedation. These complex assessments require skill and experience. After the patient's death, medications, including opioids, need to be disposed of safely via a pharmacy. District nurses are often unable to remove medications from the home due to local medication management policies. They need to advise families to take the medications to their local pharmacy as soon as is practically possible.
Evidence informing best practice in anticipatory prescribing is limited. A recent systematic review of the evidence (Bowers et al, 2019) found that anticipatory prescribing practice is based primarily on healthcare professionals' views that it reassures patients and their families, effectively controls symptoms and prevents crisis hospital admissions. However, the views and experiences of patients and their families have not been adequately investigated and neither has anticipatory prescribing's clinical effectiveness, cost-effectiveness and safety (Bowers et al, 2019). It seems that practice and policy may have developed ahead of the evidence base.
In light of the vacuum of evidence, it is important that district nurses take into account the benefits and risks of anticipatory prescribing carefully, especially since district nurses often report that they ask GPs to prescribe the medications (Wilson et al, 2016; Bowers and Redsell, 2017) and then judge when to administer them (Wilson et al, 2015). Decisions need to be based on patient preferences and wishes around their endof-life care. The potential benefits of the medications and their likely adverse effects (including sedation and impaired cognition) need explaining so that patients can make informed decisions. Medications and doses need tailoring to the patient's needs and likely symptoms (NICE, 2015). Families and other informal carers require clear guidance on when and how to call for a home visit if they feel that the patient is in distress and may need the medication (Payne et al, 2015). A clear plan for monitoring medications, their effectiveness and acceptability must be put in place and reviewed regularly with the patient, their family and the GP.
Conclusion
The growing need for high-quality end-of-life care in the home provides an opportunity for district nurses to demonstrate their expertise as leaders and coordinators of joined-up care. However, anticipatory prescribing needs to be embraced with caution, recognising that the current evidence of what constitutes best practice is limited. Truly patient-focused care means that anticipatory prescribing, like all elements of care delivery, should be tailored to each patient's unique situation, wishes and needs.