Aims and intended learning outcomes

The aim of this article is to enhance community nurses’ understanding of the needs of people who wish to die at home. To facilitate a home death, nurses should ensure care is person centred, undertake holistic assessments and support advance care planning, underpinned by advanced communication skills. After reading this article and completing the time out activities you should be able to:

Introduction

The decision for a person to be cared for at the end of life in the home environment requires careful consideration by everyone involved, including the individual themselves, their family (meaning all those important to the patient), healthcare practitioners and carers. Community nurses often have a central role in the coordination of services and the utilisation of the skills and expertise available in the multidisciplinary team, which are essential to providing person-centred care. Patients’ needs are often complex, and they require compassionate and timely responses from community nurses and the wider multidisciplinary team.

At the core of effective nursing practice is the establishment of a therapeutic relationship with patients and families, which enables the nurse to have a positive effect on decision-making and patient advocacy (Adams et al 2011). During the coronavirus disease 2019 (COVID-19) pandemic there was a reduction in face-to-face home visits from GPs (British Medical Association 2020, Prvu Bettger et al 2020), putting additional pressure on community nurses, who continued to carry out palliative and end of life care in people’s homes. Over this period, community nurses reported feelings of isolation in the absence of normal multidisciplinary team working (Mitchell et al 2021). At the same time, service demand in the community increased as more palliative care patients chose to remain at home (Bone et al 2020). Reasons for this included fear of infection, feeling safer at home, limits to visiting in inpatient settings and not wanting to be a burden on overstretched hospital services (Hiom 2020, Quinn-Scoggins et al 2021).

These additional demands have been challenging for community nurses; some of these issues will continue, so they need to be understood further. It is important for community nurses to consider the environmental factors that may support or hinder the provision of effective person-centred care.

Person-centred care

Person-centred care has been a long-held objective in nursing, healthcare and social care policies and practice. This concept involves positioning the patients at the centre of their care and alongside healthcare practitioners as care planners rather than passive recipients of care (Social Care Institute for Excellence 2021). Person-centred care can be described as the relationship between a healthcare practitioner and a patient and those important to them, which is based on understanding, respect, shared values and creating a space where individuals can share their experiences and perceptions of the current situation, as well as their needs and hopes (Price 2019). McCormack and McCance (2017) described person-centred practice as:

‘An approach to practice established through the formation and fostering of healthful relationships between all care providers, service users and others significant to them in their lives. It is underpinned by values of respect for persons, individual right to self-determination, mutual respect and understanding. It is enabled by cultures of empowerment that foster continuous approaches to practice development.’

Central to these definitions of person-centred care are effective relationships and the shared values that support these. Buetow (2016) asserted that the moral values and interests of healthcare practitioners deserve as much consideration as those of patients. For example, there may be times when practitioners cannot carry out what they believe to be ethically appropriate actions and this can cause distress, resulting in suboptimal collaboration, low job satisfaction and engagement – all of which will be detrimental to person-centred care (Lamiani et al 2017). McCormack and McCance’s (2020) Person-Centred Practice Framework (Figure 1) provides a useful tool for achieving the desired outcome of a healthful culture through person-centred processes.

Figure 1.

Person-centred practice framework

Many of the concepts and categories in the Person-Centred Practice Framework overlap (van der Cingel et al 2016), but they all need to be considered carefully to support person-centred care outcomes (McCormack 2020). Carvajal et al’s (2019) scoping review identified that the barriers to nurses achieving person-centred care were related to: knowledge of end of life care; communication skills; coping strategies; and teamwork. Environmental factors – for example resources, the physical environment and communication among the multidisciplinary team – also need to be considered because these can support or hinder person-centred care. Some community nurses may feel unprepared to manage complex end of life care, particularly with the additional challenge of normal support services being restricted or unavailable during the COVID-19 pandemic, alongside widespread staff shortages.

To achieve person-centred care in practice, nurses need to focus on:

Nurse-patient relationship

The nurse-patient relationship is a core component of person-centred care. As social beings, humans need to feel a sense of connectedness with others (Rogers 1961, Gilbert 2010). To be able to listen and truly understand a patient’s concerns, needs and hopes, it is important for the nurse to develop a rapport with them, which will enable a therapeutic relationship to be established. This requires significant skill and emotional investment from the nurse, who may feel vulnerable as close relationships develop with patients approaching the end of life. It involves ‘being alongside’ rather than ‘doing for’ a person who is at the end of life, which implies an equal relationship, and this level of engagement may cause discomfort.

An effective nurse-patient relationship can be achieved through authentic engagement when those involved connect on an emotional level, value and respect each other as whole human beings. To be authentic, nurses need to be honest, open and genuine, while understanding the needs of others and themselves (Bordin 1979, Heron 1999). Caring for people at the end of their life often presents challenges that nurses may feel they cannot adequately address, and in some cases the nurse may need to explain that some treatment options are not suitable or that it will not be possible to meet certain care preferences. Shared decision-making and care planning is vital to support the attainment of realistic outcomes while addressing aspects related to the patient’s physical and mental well-being (Roter 2000, Reubin and Tinetti 2012).

Collaboration and equality in the nurse-patient relationship can empower individuals to have a sense of control over their treatment and care options. However, balanced against this is the need for an awareness of professional boundaries and consideration of the effect of such a relationship on the nurse’s well-being.

Holistic assessment

Before any shared decisions about care and treatment can be made, a holistic assessment of the patient should be undertaken, which can then be used as a basis for planning care with the patient and their family. Community nurses are in an optimal position to facilitate this assessment. To uphold the principles of person-centred care, nurses need to hear and understand the patient’s ‘story’, including their hopes, priorities and goals.

The elements of a holistic assessment should be taken into consideration, including the overall health of the individual from a physiological, psychological, sociological, spiritual and cultural perspective. Faull and Blankley (2015) suggested that these elements need to be considered alongside knowledge of the person’s disease and its anticipated symptoms, enabling timely decisions to be made about care and treatment, with appropriate involvement across services. Part of the assessment process involves identifying people’s concerns, which can subsequently lead to shared decision-making and promote a forward-thinking approach. It is also beneficial to establish common priorities and expectations regarding the outcomes of treatment and disease progression (Antunes et al 2014).

The Outcome Assessment and Complexity Collaborative (an initiative that seeks to implement outcome measures into routine palliative care) advocates several measures that may assist healthcare practitioners to establish the pillars of the assessment process (Witt et al 2021). Such measures can be used to improve team working, drive quality improvement, deliver evidence on the effect of services, inform commissioning and achieve improved outcomes for patients. The measures developed by the Outcome Assessment and Complexity Collaborative include the following elements of palliative care practice, which should be considered (Witt et al 2021):

Shared decision-making

The shared decision-making process can be complex and involves collaborative conversations that explore patients’ preferences regarding their care and treatment. This process also requires healthcare practitioners to share their expertise and knowledge with the patient in a format that they understand, thus helping to inform their decision-making. It is important to acknowledge that at times the patient will be the expert in their condition, particularly those with long-term conditions (NICE 2022).

Applying a shared decision-making approach is challenging at the end of life because there are often significant levels of emotional distress, so the process requires not only time, but also emotional investment and energy from patients, family members and nurses (Phillips et al 2019). Many patients will involve their family in decision-making to varying degrees and this may include younger children, although they are often excluded from potentially distressing conversations. Balancing family involvement with the patient’s autonomy to make decisions can present challenges (Dees et al 2013). In addition, as a coping mechanism, some patients may distance themselves from decision-making, and this needs to be acknowledged and respected by their family members and healthcare practitioners.

Healthcare practitioners have a duty to offer patients choices that are realistic, balanced and fair, which will promote and enhance autonomy and ultimately improve care quality. However, when resources are scarce, not all patient choices can be fulfilled (Zolkefli 2017). Offering choices and ensuring that healthcare practitioners respect these can contribute to a sense of personal worth for patients. At a time when an incurable condition may have limited many aspects of a person’s life, enhanced self-worth and a sense of control over some aspects of their care can have a positive psychological effect on them and their family. This can only be achieved by sitting with individuals and actively listening to what matters to them (Bélanger et al 2011, Kuosmanen et al 2021).

Importance of self-care for nurses

In the authors’ experience, in challenging situations such as end of life care, nurses are often critical of themselves, particularly when a situation has not gone well. This can result in a lack of confidence in their ability to carry out the role.

High workloads may compound this issue and can result in high stress levels and emotional exhaustion, which may manifest in lower job performance, higher staff sickness levels, low staff retention and reduced job satisfaction (Burke 2014, Jun et al 2021).

Talking to colleagues informally and formally can assist nurses to gain a sense of perspective and balance. If available, resilience-based clinical supervision provides an opportunity for gaining such perspective and balance by focusing on the emotional systems that motivate people’s responses to work situations or issues.

Resilience-based clinical supervision includes elements of mindfulness-based exercises with a view to enhancing well-being, resilience and care (Foundation for Nursing Studies 2018). Mindfulness refers to an individual’s ability to remain present and fully engaged with whatever they are doing in the moment – free from distraction or judgment, and aware of their thoughts and feelings without becoming ‘caught up’ in them. Its benefits are widely recognised in healthcare and broader society (Orellana-Rios et al 2018, Warth et al 2020).

Practical mindfulness-based changes that nurses could initiate may include establishing a positive morning routine, concentrating on one task at a time, taking meaningful breaks, focusing on breathing and making plans after work (Bhatti 2022). Mindfulness will not remove the challenges a nurse experiences, but it may empower them to regain some control and work effectively.

Staff well-being is recognised as an important prerequisite for person-centred care outcomes (McCormack and McCance 2017, Sizmur and Raleigh 2018). Organisational support, such as employee assistance programmes and access to resilience-based clinical supervision, is required. The Royal College of Nursing (2019, 2021) advises that community nurses should also take some responsibility for their health and engage in achieving a sustainable work-life balance, which will assist them to be compassionate towards themselves and others.

Conclusion

The delivery of end of life care at home is complex, and the COVID-19 pandemic led to increased challenges for community nurses in supporting person-centred care, with an ever-changing environment and an expectation that they would continue to provide face-to-face visits for patients, including those approaching the end of life. There is a requirement for nurses to continuously develop their palliative and end of life knowledge and skills, including advanced communication skills, which may give them greater confidence to broach the subject of death and dying with patients and families. Healthcare organisations and service leads should develop policies, training and tools that support person-centred practice. Organisations should also be cognisant of staff well-being and the need to provide resources to support nurses.