How does English national end-of-life care policy impact on the experience of older people at the end of life? Findings from a realist evaluation

Abstract

Aim: 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. Background: 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. Method: 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. Findings: 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.

Supporting the dying is a community responsibility

“…12 This approach recognises that death is a social event with a medical component, not a medical event with a social component. 5 The answer lies in supporting, looking after and caring for those who are unwell, dying, or grieving within their community network. 1 , 13 …”

How can the priorities of older, frail patients and their carers be used to inform policy and practice at the end of life? Insights from qualitative research across multiple settings

“…4 CONSTRAINTS RE proved an appropriate method to explore and test putative mechanisms and theories with which to frame the enactment of effective EoL policies, a process which is discussed elsewhere. 6 In relation to the focus of this paper, the appropriateness of the use of the realist interviewing technique is worth considering. The interviewing style is based on a 'teacher/learner relationship' where the interviewer introduces the interview by subtly communicating the conjectured theory-giving the respondent the opportunity to either support or refute these ideas.…”

“…Throughout this process, in line with theory development in RE methodology, 14 notes were kept on emerging Context Mechanism Outcome configurations. 6 Codes were then entered into NVivo 15 and refined. The allocation of codes involved both induction (codes emerging from the data) and deduction (codes created in advance informed by the initial rough programme theory).…”

“…The way EoL care is delivered in England is often far removed from the aspiration to provide a joined up, seamless service along the patient pathway. 6 Confusion is voiced over how services are funded, commissioned and regulated. While hospital services are funded by the state, through the National Health Service, a large part of hospice funding is provided by charities 7 and other services, providing support for frail older people, are supported by local authorities or charitable enterprises.…”

“… 10 This article draws on a research project which explored the national implementation of EoL policy, in which a wide range of stakeholders were interviewed to explore alignment of policy priorities in each group, and the broader study is reported elsewhere. 6 11 The paper focusses on the voice of older people aged 75+ years, identified by clinicians as being at the EoL, and their carers, to reflect on how to align current system pressures with patient wishes. The term carer is used here to describe those who took on an unpaid role providing support to someone at the EoL, in the vast majority of cases they were relatives, usually a child or spouse.…”