Dying at home is idealised in policy and clinical discourse as a way people can be in a comforting space for their last days of life, surrounded by loved ones, free from pain and distress. However, a significant proportion of accounts from bereaved carers challenge this assumption and these make make for uncomfortable but important reading (Bowers et al, 2022; Pollock et al, 2023; Johansson et al, 2024). Healthcare professionals need to learn from these experiences to ensure timely and effective dying symptom control care at home.
The number of deaths occurring at home increased during the COVID-19 pandemic. This trend has continued and is projected to rise further (Bone et al, 2018). In England, 49.3% of deaths occurred at home and care homes in 2022 (Office for Health Improvement and Disparities, 2024). The shift towards providing more care at home in the last days of life has added to the demands on the already over-stretched community nursing and primary care teams, who are managing increasingly complex patients with limited resources.
Providing symptom control input to dying patients is considered a core component in the scope of practice of community nurses and general practitioners, and this aspect of care is a priority (Wilson et al, 2015; Mitchell et al, 2016). However, a recent UK-wide survey revealed that 16.6% of community nurse respondents felt that end-of-life care, including symptom control, was not delivered to their professional satisfaction because of capacity and workload challenges (Queen's Nursing Institute, 2024). This is a worrying sign, as suboptimal symptom control interventions indicate gaps in responsive, person-centred care. When such priority work is neglected, it can exacerbate the distress experienced by the patients, their families and the nurses.
A recent survey of bereaved family and friend carers in England and Wales highlighted the challenges of symptom control for dying patients at home. Almost 40% of the respondents reported that patients at home were severely or overwhelmingly affected by pain, breathlessness or anxiety, and were not at peace in the last week of their life (Johansson et al, 2024). Whether these patients were prescribed or received oral and injectable medication to manage or alleviate end-of-life symptoms is unclear because of the study methods used.
Providing timely and effective symptom management at home poses considerable challenges. Patients often reach a point where they are unable to swallow oral medication, limiting the options and agency their families have in providing timely symptom relief without sourcing clinical help. Consequently, injectable medications, including opioids, sedatives and antiemetics, are frequently prescribed in advance (anticipatory medication) or in response to new or worsening symptoms (Bowers et al, 2022; Scobie et al, 2024). Patients and families often receive limited or inadequate information about these medications and their role in the dying process (Pollock et al, 2021; Bowers et al, 2022). This makes it harder for families to know when to call community nurses for help. Similarly, family carers can experience considerable difficulties in sourcing home visits and persuading visiting nurses to administer injectable medications; family members may also be reluctant to use injectable medication (Bowers et al, 2022; 2024). Less experienced community nurses often struggle with decisions to administer injectable medications. They are acutely aware of the need to balance effective symptom control with the risk of oversedation (Wilson et al, 2015; Staats et al, 2018). It is distressing for everyone involved when patients suffer because of inadequate symptom relief in their last days. In the resource-constrained healthcare environment of today, it is vital that multidisciplinary teams find ways to provide timely and effective symptom control support in the community. In the words of Dame Cicely Saunders, the founder of the modern palliative care movement, ‘You matter because you are you. You matter until the last moment of your life, and we will do all we can to help you not only to die peacefully, but to also to live until you die.’