how does english national end of life care policy impact on the experience of older CORD-Papers-2022-06-02 (Version 1)

Title: 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.
Published: 2021-10-27
Journal: Prim Health Care Res Dev
DOI: 10.1017/s1463423621000621
DOI_URL: http://doi.org/10.1017/s1463423621000621
Author Name: Barker Rhiannon
Author link: https://covid19-data.nist.gov/pid/rest/local/author/barker_rhiannon
Author Name: Wilson Patricia
Author link: https://covid19-data.nist.gov/pid/rest/local/author/wilson_patricia
Author Name: Butler Claire
Author link: https://covid19-data.nist.gov/pid/rest/local/author/butler_claire
sha: d0476164b6b857a859fb0b6d8ba8aa72fc9c5aaf
license: cc-by
license_url: https://creativecommons.org/licenses/by/4.0/
source_x: Medline; PMC; WHO
source_x_url: https://www.medline.com/https://www.ncbi.nlm.nih.gov/pubmed/https://www.who.int/
pubmed_id: 34702423
pubmed_id_url: https://www.ncbi.nlm.nih.gov/pubmed/34702423
pmcid: PMC8569907
pmcid_url: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8569907
url: https://www.ncbi.nlm.nih.gov/pubmed/34702423/ https://doi.org/10.1017/s1463423621000621
has_full_text: TRUE
Keywords Extracted from Text Content: people patients Covid-19 Patient EOLC NHS C.Clinical.2 patients Patients Cowper cultures mother EOLyet B.Clinician.1 Patient EOLC UK CMO carebut people residents raft centre C.Non-Clinical.7 mumthere gulf ACP her in-part Sallnow hospice A.Carer.7 CMOs Papoutsi £ HSJ hospitalor RAMESES II Covid-19 line English EOLC A.Carer.3 PC hospitalswhen friends CCGs people patient STPs A.Clinician.1 NPELCP A.Carer.10 A.Clinician.11 bodies patients CCG Patients human A. PPE B.Clinician.5 Figure 2 Figure 3 toilet Conflicts Centre for Health Service generously patients
Extracted Text Content in Record: First 5000 Characters: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. 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. Whilst models and care pathways may appear theoretically sound, the way they play out when transposed onto a variety of different contexts may result in intended outcomes not being realised. 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. Yet 15 or so years after it was first introduced, following adverse publicity, with patients' families decrying the callous treatment they perceived their relatives to have received, the practice was withdrawn with a review attributing its failure in part to lack of resource provided to properly train staff (Neuberger et al., 2013) . Globally people are living longer with more complex co-morbidities. In the UK, two-thirds of deaths now 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 not only specialists with a focus on specific diseases, but also 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) . This article reports on findings from three London-based case studies undertaken as part of a broader piece of realist research, of which the scoping study has been previously reported (Barker et al., 2020) . The study set out to explore how effective English EOLC policy is ensuring services are in place that meets patients' needs and requirements. Fieldwork was undertaken before the onset of the Covid-19 pandemic. The study took a broad perspective, examining different system levels: micro, meso and macro. National EOLC policy is not welldefined, and commentators have pointed towards the myriad of guidance documents in circulation, some of unclear status and provenance (Centre for Health and Social Care Research, 2016) . 'Ambitions for Palliative Care' (NPELCP, 2015) is accepted here as the most significant policy document to emerge in the last decade, presenting a framework of six ambitions for EOLC, namely to: individualise care; provide fair access; maximise comfort; coordinate care; ensure staff are prepared to care and facilitate community involvement. One of the central planks of the discourse espoused in national policy and interrogated in this article is that patient's often want to die in familiar surroundings (
Keywords Extracted from PMC Text: English EOLC friends A.Carer.7 B.Clinician.1 line UK human toilet patients A.Non-Clinical.2 patient's NPELCP RAMESES II ACP A.Carer.3 mother CMOs Figure 3 Papoutsi A.Clinician.11 centre 's bodies Covid-19 Patients residents A.Carer.10 patient PC CMO £ STPs raft Sallnow in-part people B.Clinician.5 NHS C.Non-Clinical.7 Cowper C.Clinical.2 HSJ ... A.Clinician.1 PPE people's priorities;Key Patient A.Patient.1 EOLC hospice her CCGs
Extracted PMC Text Content in Record: First 5000 Characters: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. Whilst models and care pathways may appear theoretically sound, the way they play out when transposed onto a variety of different contexts may result in intended outcomes not being realised. 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. Yet 15 or so years after it was first introduced, following adverse publicity, with patients' families decrying the callous treatment they perceived their relatives to have received, the practice was withdrawn with a review attributing its failure in part to lack of resource provided to properly train staff (Neuberger et al., 2013). Globally people are living longer with more complex co-morbidities. In the UK, two-thirds of deaths now 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 not only specialists with a focus on specific diseases, but also 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). This article reports on findings from three London-based case studies undertaken as part of a broader piece of realist research, of which the scoping study has been previously reported (Barker et al., 2020). The study set out to explore how effective English EOLC policy is ensuring services are in place that meets patients' needs and requirements. Fieldwork was undertaken before the onset of the Covid-19 pandemic. The study took a broad perspective, examining different system levels: micro, meso and macro. National EOLC policy is not well-defined, and commentators have pointed towards the myriad of guidance documents in circulation, some of unclear status and provenance (Centre for Health and Social Care Research, 2016). 'Ambitions for Palliative Care' (NPELCP, 2015) is accepted here as the most significant policy document to emerge in the last decade, presenting a framework of six ambitions for EOLC, namely to: individualise care; provide fair access; maximise comfort; coordinate care; ensure staff are prepared to care and facilitate community involvement. One of the central planks of the discourse espoused in national policy and interrogated in this article is that patient's often want to die in familiar surroundings (their own home or nursing home) and that policy should support people's choice to do so. Indeed, one of the current key performance indicators deemed indicative of the quality of EOLC focusses on the place of death. Yet, there remains a lack of clarity about where this should be. Whilst a number of surveys indicate that the majority of people express a preference for dying at home, this data has been called into question (Hoare et al., 2015), particularly for older people as their condition deteriorates (Davidson and Gentry, 2013). Realist evaluation (RE), suited to highly complex social situations (Greenhalgh and Papoutsi 2018), was chosen as an appropriate method to interrogate the questions posed in this study. A better understanding of how and why policies are implemented (political, social, economic influences) will strengthen the ability of actors to influence policy for the better (Gilson, 2012). Understanding how patients at the EOL and their carers perceive the care they receive, and developing a clear picture of their priorities, is key to arriving at effective, appropriate strategies to care for those who are dying. Policies are likely to be successful where there is alignment and cohesion between the aspirations of policy and the views of stakeholders (May et al., 2015). The Economist Intelligence Unit (2015), which ranks the quality of death across forty countries internationally, includes the existence of national policy as a contributory factor in their appraisal system. The UK, in-part due to the demonstration of robust policy, is ranked at the top of the table. Yet, the process and mechanisms by which the existence of national policy leads to effective, equitable care remains opaque, and extreme variation in practice has been highlighted (CQC, 2016). This study sheds light on some of the mechanisms which led to policy being developed and implemented successfully. The study set out to exp
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