How does English End of Life Care and the views of stakeholders fit with the ambitions of national policy: insights from a realist evaluation

Background: In England as in other European and North American countries people are living longer with more complex co-morbidities, requiring clearer guidance be given on the delivery of scarcer public resources to fund health and social care. The global rankings of End of Life Care (EOLC) put together by the Economist Intelligence Unit (EIU) rates English EOLC services more highly than any other country (EIU 2015). A key contributory factor, pushing England to this top ranking, is the existence of what is seen as a robust EOLC policy. Yet, whilst there is strong agreement in most policy documents as to what determines good practice around EOLC (Centre for Health and Social Care Research 2016), there is little analysis or discussion as to how policy contributes to improved practice, both in terms of continual improvement of guidance and the process by which it is translated into practice. Aims and Objectives: This study explores EOLC Strategy and Policy in England (both national and local). It asks to what extent national policy is effective in influencing and guiding local practice to help ensure that care is of a consistently good quality. Pivotal to gaining a clearer understanding of how policy works in practice was the interrogation of: i) the key contextual factors that needed to be in place in order for EOLC policy to be effectively enacted; ii) how well aligned policy ambitions were with the differing priorities and perspectives of stakeholders. Methodology: The study followed a Realist Evaluation (RE) methodology (Pawson and Tilley 1997) and was divided into two phases: i) Scoping study; compromising a literature review and 12 in-depth interviews with professionals involved in the creation of EOLC policy. ii) Case studies of three Clinical Commissioning Groups (CCGs); comprising documentary analysis, meeting observation and 96 in-depth interviews with 4 key stakeholder groups. Results: This study reveals the key contextual factors which need to be in place if EOLC Policy is to be effectively implemented. In line with Pawson's (2006) conception of context these are located at the levels of: individual capabilities and characteristics, interpersonal relationships, organisational settings and infrastructural settings. The findings provide insight into the rapidly changing policy environment, the rising local inequalities and the impact that ongoing NHS organisational change has on both commissioning and service provision. The sense of fragmentation and the way services have built up, piecemeal, over the years is noted, as is the tendency to accept and replicate historical patterns of commissioning. The narratives from different stakeholders offer insight into the degree to which their attitudes, opinions and needs align with those articulated in policy statements. It is in the areas of significant misalignment that the challenges lie. Particularly noteworthy was the division between the delivery of clinical/transactional care on the one hand which was generally felt to be of high quality and relational/social care on the other - which, though seen as a priority by patients and relatives, was undervalued and overlooked at a system level. Discussion: This piece of research was ambitious in its scope and revealed the huge levels of complexity involved in implementing effective EOLC policy. EOLC operates across multiple settings and sectors and findings reinforce the impossibility of arriving at a neat set of conclusions, where inputs can be causally linked to outputs. The aspirations of EOLC policy, in as far as it lays out an acceptable vision of what good patient centred care looks like at the end of life, were largely found to be acceptable. Yet within the different contextual landscape of each case study there was evidence of disparities in the scale of local provision, leading to increasing inequalities. Whilst examples of excellent practice prevail, running alongside these are instances where the needs of individuals and communities are marginalised and overlooked. At the core of this dislocation is the lack of rigorous planning and strategy in the way services are prioritised and valued. At the end of life (EOL) two key priorities are signalled. The first is the clinical imperative to ensure that patients are pain free and have their symptoms controlled and the second relates to relational care - to ensure that patients are treated with kindness, compassion and dignity. Whilst most respondents in the research were confident that good clinical care was generally received there was considerably less assurance that adequate levels of relational care could be guaranteed. Redressing the imbalance between health needs on the one hand and social care needs on the other is a major task and one which urgently needs to be addressed. Recommendations: Meeting the challenge to establish closer alignment between health and social care will involve input at multiple structural levels including policy change, structural alignment of services, public education, improved training and staff support - particularly for social care staff.