Facilitating equitable access to hospice care in socially deprived areas: A mixed methods multiple case study.

BACKGROUND: There is uncertainty about the factors influencing inequities in access to palliative care in socially deprived areas, including the role of service models and professional perceptions. AIM: To explore the relationship between social deprivation and access to hospice care, including factors influencing access and professional experiences of providing care. DESIGN: A mixed-methods multiple case study approach was used. Hospice referrals data were analysed using generalised linear mixed models and other regression analyses. Qualitative interviews with healthcare professionals were analysed using thematic analysis. Findings from different areas (cases) were compared in a cross-case analysis. SETTING: The study took place in North West England, using data from three hospices (8699 hospice patients) and interviews with 42 healthcare professionals. RESULTS: Social deprivation was not statistically significantly, or consistently, associated with hospice referrals in the three cases (Case 1, Incidence Rate Ratio 1.04, p = 0.75; Case 2, Incidence Rate Ratio 1.09, p = 0.15, Case 3, Incidence Rate Ratio 0.88, p = 0.35). Hospice data and interviews suggest the model of hospice care, including working relationship with hospitals, and the local nature of social deprivation influenced access. Circumstances associated with social deprivation can conflict with professional expectations within palliative care. CONCLUSION: Hospice care in the UK can be organised in ways that facilitate referrals of patients from socially deprived areas, although uncertainty about what constitutes need limits conclusions about equity. Grounding professional narratives around expectations, responsibility, and choice in frameworks that recognise the sociostructural influences on end-of-life circumstances may help to foster more equitable palliative care.

Improving paramedic responses for patients dying at home: a theory of change-based approach.

BACKGROUND: Paramedics are increasingly being called to attend patients dying from advanced incurable conditions. However, confidence to deal with such calls varies, with many feeling relatively unskilled in this aspect of their role. A number of interventions have been piloted to improve their skills in end-of-life care (EoLC) but without a fully specified theoretical model. Theory of Change models can provide theoretical and testable links from intervention activities to proposed long-term outcomes and indicate the areas for assessment of effectiveness. This study aimed to develop an intervention for improving paramedic EoLC for patients in the community. METHODS: A Theory of Change approach was used as the overarching theoretical framework for developing an intervention to improve paramedic end-of-life skills. Nine stakeholders - including specialist community paramedics, ambulance call handlers and palliative care specialists - were recruited to five consecutive online workshops, ranging between 60 and 90 min. Each workshop had 2-3 facilitators. Over multiple workshops, stakeholders decided on the desired impact, short- and long-term outcomes, and possible interventions. During and between these workshops a Theory of Change model was created, with the components shared with stakeholders. RESULTS: The stakeholders agreed the desired impact was to provide consistent, holistic, patient-centred, and effective EoLC. Four potential long-term outcomes were suggested: (1) increased use of anticipatory and regular end-of-life medications; (2) reduced end-of-life clinical and medication errors; (3) reduced unnecessary hospitalisations; (4) increased concordance between patient preferred and actual place of death. Key interventions focused on providing immediate information on what to do in such situations including: appraising the situation, developing an algorithm for a treatment plan (including whether or not to convey to hospital) and how to identify ongoing support in the community. CONCLUSIONS: A Theory of Change approach was effective at identifying impact, outcomes, and the important features of an end-of-life intervention for paramedics. This study identified the need for paramedics to have immediate access to information and resources to support EoLC, which the workshop stakeholders are now seeking to develop as an intervention.

Exploring socioeconomic inequities in access to palliative and end-of-life care in the UK: a narrative synthesis.

BACKGROUND: Efforts inequities in access to palliative and end-of-life care require comprehensive understanding about the extent of and reasons for inequities. Most research on this topic examines differences in receipt of care. There is a need, particularly in the UK, for theoretically driven research that considers both receipt of care and the wider factors influencing the relationship between socioeconomic position and access to palliative and end-of-life care. METHODS: This is a mixed studies narrative synthesis on socioeconomic position and access to palliative and end-of-life care in the UK. Study searches were conducted in databases AMED, Medline, Embase, CINAHL, SocIndex, and Academic Literature Search, as well as grey literature sources, in July 2020. The candidacy model of access, which describes access as a seven-stage negotiation between patients and providers, guided study searches and provided a theoretical lens through which data were synthesised. RESULTS: Searches retrieved 5303 studies (after de-duplication), 29 of which were included. The synthesis generated four overarching themes, within which concepts of candidacy were evident: identifying needs; taking action; local conditions; and receiving care. CONCLUSION: There is not a consistent or clear narrative regarding the relationship between socioeconomic position and receipt of palliative and end-of-life care in the UK. Attempts to address any inequities in access will require knowledge and action across many different areas. Key evidence gaps in the UK literature concern the relationship between socioeconomic position, organisational context, and assessing need for care.

Food insecurity, mental health and in-hospital mortality following the COVID-19 pandemic in a socially deprived UK coastal town.

Background: Public health interventions are essential to prevent a long tail of costly, avoidable and worsening ill health in coastal communities following the COVID-19 pandemic, yet no research exists to guide policy and practice as to which groups within coastal communities are vulnerable and most in need of such interventions. Within this aim, we explore engrained and emerging vulnerabilities of food insecurity, health and well-being for different demographic groups within the deprived coastal community of Fleetwood, Lancashire, UK, before and after the pandemic. Methods: Routinely collected data of free school meal eligibility, community mental health referrals and hospital admissions between 28 March 2016 and 31 December 2021 were aggregated by locality and deprivation within Fleetwood. Temporal autoregressive models, generalised linear mixed models and survival analyses were employed to compare trends and associations in food insecurity, health and well-being indicators against deprivation indices, demographics, comorbidities (including COVID-19), the COVID-19 pandemic period and locality. Results: Areas with better housing and income, but higher health and disability deprivation, showed increased levels of free school meal eligibility following the pandemic. Mental health was insensitive to the first 14 months of pandemic yet is worsened by unemployment deprivation and cardiovascular and respiratory comorbidities, with a greater predisposition to poor mental health in adolescents and young adults. After accounting for the effect of COVID-19, hospital mortality risk increased with demographic influences in fitting with the typology of coastal communities having an older population, struggling healthcare and a greater prevalence of comorbidities. Conclusions: Public health managers and policy makers seeking to prevent worsening health and well-being within coastal communities following the pandemic should focus on broader-scale patterns reflecting entrenched poor health typical of coastal communities, and emerging food insecurity within specific demographic and deprivation groups at finer scales.

Reflecting on choices and responsibility in palliative care in the context of social disadvantage.

There is a need to understand how to improve palliative care provision for people impacted by social inequity. Social inequity, such as that related to socioeconomic circumstances, has profound impacts on experiences of death and dying, posing personal and professional challenges for frontline professionals tasked to ensure that everyone receives the best standard of care at the end of their lives. Recent research has highlighted an urgent need to find ways of supporting healthcare professionals to acknowledge and unpack some of the challenges experienced when trying to deliver equitable palliative care. For example, those involved in patient or person-centred activities within health settings often feel comfortable focusing on individual choice and responsibility. This can become ethically problematic when considering that inequities experienced towards the end of life are produced and constrained by socio-structural forces beyond one individual's control. Ideas and theories originating outside palliative care, including work on structural injustice, cultural safety and capabilities approach, offer an alternative lens through which to consider roles and responsibilities for attending to inequities experienced at the end of life. This paper draws upon these ideas to offer a new way of framing individual responsibility, agency and collective action that may help palliative care professionals to support patients nearing their end of life, and their families, in the context of socioeconomic disadvantage. In this paper, we argue that, ultimately, for action on inequity in palliative care to be effective, it must be coherent with how people understand the production of, and responsibility for, those inequities, something that there is limited understanding of within palliative care.

Deathbed Etiquette - The Guide: A Qualitative Study Exploring the Views of Practitioners on its Introduction into End-of-Life Care Settings.

Objectives: It is common for relatives to feel uncertain about what to expect at the bedside of a dying loved one. The Centre for the Art of Dying Well together with clinical, academic and communications experts created a 'Deathbed Etiquette' guide offering information and reassurance to relatives. This study explores the views of practitioners with experience in end-of-life care on the guide and how it might be used. Methods: Three online focus groups and nine individual interviews were conducted with a purposive sample of 21 participants involved in end-of-life care. Participants were recruited through hospices and social media. Data were analysed using thematic analysis. Results: Discussions highlighted the importance of effective communication that normalises experiences of being by the bedside of a dying loved one. Tensions around the use of the words 'death' and 'dying' were identified. Most participants also expressed reservations about the title, with the word 'deathbed' found to be old-fashioned and the word 'etiquette' not capturing the varied experiences of being by the bedside. Overall, however, participants agreed that the guide is useful for 'mythbusting' death and dying. Conclusion: There is a need for communication resources that can support practitioners in having honest and compassionate conversations with relatives in end-of-life care. The 'Deathbed Etiquette' guide is a promising resource to support relatives and healthcare practitioners by providing them with suitable information and helpful phrases. More research is needed on how to implement the guide in healthcare settings.

Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors' and patients' perspectives.

OBJECTIVE: Delivering a life changing diagnosis can be a distressing experience for patients and a challenging task for professionals. Diagnosis delivery can be especially difficult for individuals with neurodegenerative diseases such as motor neurone disease (MND), multiple sclerosis (MS) and Parkinson's disease (PD). This review aims to scope the literature on doctors' and patients' perspectives on diagnosis delivery for these conditions in order to enhance our understanding in this area and identify potential research gaps. METHODS: A scoping review methodology was used, and data were summarised using content analysis. RESULTS: 47 studies fulfilled the inclusion criteria. Studies showed that although patients were generally satisfied with diagnosis delivery, a considerable proportion was still dissatisfied with aspects of the consultation, especially the information and time provided and the doctor's approach. Only six studies addressed doctors' perspectives, which focused more on doctors' practice. CONCLUSION: There was a significant research gap in professionals' perspectives. The review also found that although basic standards of good practice were being met, a significant proportion of patients were dissatisfied with diagnosis communication. PRACTICE IMPLICATIONS: Professionals delivering such diagnoses need to assess and respond to patients' information needs, provide time for questions and maintain an empathic attitude.