Abstract
To explore the extent to which national policy in end-of-life care (EOLC) in England influences and guides local practice, helping to ensure that care for older people at the EOL is of a consistently good quality. Whilst policy is recognised as an important component in determining the effectiveness of EOLC, there is scant literature which attempts to interrogate how this happens or to hypothesise the mechanisms linking policy to better outcomes. This article reports on the second phase of a realist evaluation comprising three case studies of clinical commissioning groups, including 98 in-depth interviews with stakeholders, meeting observation and documentary analysis. This study reveals the key contextual factors which need to be in place at micro, meso and macro levels if good quality EOLC for older people is to be achieved. The findings provide insight into rising local inequalities and reveal areas of dissonance between stakeholder priorities. Whilst patients privilege the importance of receiving care and compassion in familiar surroundings at EOL, there remains a clear tension between this and the medical drive to cure disease and extend life. The apparent devaluing of social care and subsequent lack of resource has impacted significantly on the way in which dying is experienced.Patient experience at EOL, shaped by the care received both formally and informally, is driven by a fragmented health and social care system. Whilst the importance of system integration appears to have been recognised, significant challenges remain in terms of shaping policy to adequately reflect this. This study highlights the priority attached by patients and their families to the social and relational aspect of death and dying and shines a light on the stark disparities between the health and social care systems which became even more evident at the height of the Covid-19 pandemic.
Highlights
Policies determining issues as complex as how patients should be treated at the end-of-life (EOL) are implemented within multifaceted and interacting social layers; influenced by a myriad of contextual factors from small scale interactions between patients and family or professionals to broader structural, societal and government processes
The Liverpool Care Pathway (Neuberger et al, 2013) was a case in point; a model for end-of-life care (EOLC) receiving broad-based professional support when it was introduced in the late 1990s and hailed as a means of bringing the best of hospice practice in palliative care into wider settings
This discussion focuses on findings emerging from the case studies, explores how these have informed the revised programme theory and asks what this adds to our understanding of how to improve the effectiveness of EOLC policy and practice
Summary
Policies determining issues as complex as how patients should be treated at the end-of-life (EOL) are implemented within multifaceted and interacting social layers; influenced by a myriad of contextual factors from small scale interactions between patients and family or professionals to broader structural, societal and government processes. The Liverpool Care Pathway (Neuberger et al, 2013) was a case in point; a model for EOLC receiving broad-based professional support when it was introduced in the late 1990s and hailed as a means of bringing the best of hospice practice in palliative care into wider settings. In the UK, two-thirds of deaths occur in individuals over the age of 75 years (Office for National Statistics, 2019). This changing demographic, together with the rise in numbers of the frail elderly, has signalled a call for the reorientation of palliative care, to incorporate specialists with a focus on specific diseases, and greater requirements for those skilled in dealing with significant levels of need and complexity (Nicholson, 2017). As pressure on acute services grows, so does the imperative to find better ways of caring for the frail elderly in the community (NPELCP, 2015)
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