Palliative and End of Life Care for Black, Asian, and Minority Ethnic Groups in the UK

This report marks the start of a programme of work by many partners. A better understanding of the nation's changing demographics, of the needs of individual ethnic and cultural groups and of the types of services which will best meet their end of life care needs must be early outputs from the partnership. There are many areas which researchers will investigate further and many opportunities for service providers to work together with local communities to develop care which is sensitive and responsive to their needs as well as on a scale which will be needed for the large numbers of people who could benefi

Public Opinions about Palliative and End-of-life Care during the COVID-19 Pandemic: A Twitter-based Study

BackgroundPalliative and end-of-life care (PEoLC) played a critical role in relieving distress and providing grief support in response to the heavy toll caused by the COVID-19 pandemic. However, little is known about public opinions concerning PEoLC during the pandemic. Given that social media have the potential to collect real-time public opinions, an analysis of this evidence is vital to guide future policy-making. ObjectiveThis study aimed to use social media data to investigate real-time public opinions regarding PEoLC during the COVID-19 crisis and explore the impact of vaccination programs on public opinions about PEoLC. MethodsThis Twitter-based study explored tweets across 3 English-speaking countries: the United States, the United Kingdom, and Canada. From October 2020 to March 2021, a total of 7951 PEoLC-related tweets with geographic tags were retrieved and identified from a large-scale COVID-19 Twitter data set through the Twitter application programming interface. Topic modeling realized through a pointwise mutual information–based co-occurrence network and Louvain modularity was used to examine latent topics across the 3 countries and across 2 time periods (pre- and postvaccination program periods). ResultsCommonalities and regional differences among PEoLC topics in the United States, the United Kingdom, and Canada were identified specifically: cancer care and care facilities were of common interest to the public across the 3 countries during the pandemic; the public expressed positive attitudes toward the COVID-19 vaccine and highlighted the protection it affords to PEoLC professionals; and although Twitter users shared their personal experiences about PEoLC in the web-based community during the pandemic, this was more prominent in the United States and Canada. The implementation of the vaccination programs raised the profile of the vaccine discussion; however, this did not influence public opinions about PEoLC. ConclusionsPublic opinions on Twitter reflected a need for enhanced PEoLC services during the COVID-19 pandemic. The insignificant impact of the vaccination program on public discussion on social media indicated that public concerns regarding PEoLC continued to persist even after the vaccination efforts. Insights gleaned from public opinions regarding PEoLC could provide some clues for policy makers on how to ensure high-quality PEoLC during public health emergencies. In this post–COVID-19 era, PEoLC professionals may wish to continue to examine social media and learn from web-based public discussion how to ease the long-lasting trauma caused by this crisis and prepare for public health emergencies in the future. Besides, our results showed social media’s potential in acting as an effective tool to reflect public opinions in the context of PEoLC

Uncertainty and COVID-19: how are we to respond?

As if writing prophetically about the global Covid-19 pandemic, in 1984 Eddy suggested, “Uncertainty creeps into medical practice through every pore. Whether a physician is defining a disease, making a diagnosis, selecting a procedure, observing outcomes, assessing probabilities, assigning preferences, or putting it all together, he (or she) is walking on very slippery terrain” 1. Covid-19 has rapidly become a disease associated with unbridled uncertainty with its aetiology and management, for the healthcare systems and health professionals who provide care, and among its ultimate victims, patients and their families

Researching minoritised communities in palliative care: An agenda for change

Background: Palliative care access, experiences and outcomes of care disadvantage those from ethnically diverse, Indigenous, First nation and First people communities. Research into this field of inquiry raises unique theoretical, methodological, and moral issues. Without the critical reflection of methods of study and reporting of findings, researchers may inadvertently compromise their contribution to reducing injustices and perpetuating racism. Aim: To examine key evidence of the place of minoritised communities in palliative care research to devise recommendations that improve the precision and rigour of research and reporting of findings. Methods: Narrative review of articles identified from PubMed, CINAHL and Google Scholar for 10 years augmented with supplementary searches. Results: We identified and appraised 109 relevant articles. Four main themes were identified (i) Lack of precision when working with a difference; (ii) ‘black box epidemiology’ and its presence in palliative care research; (iii) the inclusion of minoritised communities in palliative care research; and (iv) the potential to cause harm. All stymie opportunities to ‘level up’ health experiences and outcomes across the palliative care spectrum. Conclusions: Based on the findings of this review palliative care research must reflect on and justify the classification of minoritised communities, explore and understand intersectionality, optimise data quality, decolonise research teams and methods, and focus on reducing inequities to level up end-of-life care experiences and outcomes. Palliative care research must be forthright in explicitly indentifying instances of structural and systemic racism in palliative care research and engaging in non-judgemental debate on changes required

‘End of life could be on any ward really’:A qualitative study of hospital volunteers’ end-of-life care training needs and learning preferences

Background: Over half of all deaths in Europe occur in hospital, a location associated with many complaints. Initiatives to improve inpatient end-of-life care are therefore a priority. In England, over 78,000 volunteers provide a potentially cost-effective resource to hospitals. Many work with people who are dying and their families, yet little is known about their training in end-of-life care. Aims: To explore hospital volunteers’ end-of-life care training needs and learning preferences, and the acceptability of training evaluation methods. Design: Qualitative focus groups. Setting/participants: Volunteers from a large teaching hospital were purposively sampled. Results: Five focus groups were conducted with 25 hospital volunteers (aged 19–80 years). Four themes emerged as follows: preparation for the volunteering role, training needs, training preferences and evaluation preferences. Many described encounters with patients with life-threatening illness and their families. Perceived training needs in end-of-life care included communication skills, grief and bereavement, spiritual diversity, common symptoms, and self-care. Volunteers valued learning from peers and end-of-life care specialists using interactive teaching methods including real-case examples and role plays. A chance to ‘refresh’ training at a later date was suggested to enhance learning. Evaluation through self-reports or observations were acceptable, but ratings by patients, families and staff were thought to be pragmatically unsuitable owing to sporadic contact with each. Conclusion: Gaps in end-of-life care training for hospital volunteers indicate scope to maximise on this resource. This evidence will inform development of training and evaluations which could better enable volunteers to make positive, cost-effective contributions to end-of-life care in hospitals. </jats:sec

The conceptual models and mechanisms of action that underpin advance care planning for cancer patients: A systematic review of randomised controlled trials

Background: No systematic review has focused on conceptual models underpinning advance care planning for patients with advancedcancer, and the mechanisms of action in relation to the intended outcomes.Aim: To appraise conceptual models and develop a logic model of advance care planning for advanced cancer patients, examining thecomponents, processes, theoretical underpinning, mechanisms of action and linkage with intended outcomes.Design: A systematic review of randomised controlled trials was conducted, and was prospectively registered on PROSPERO. Narrativesynthesis was used for data analysis.Data sources: The data sources were MEDLINE, CINAHL, PsycINFO, EMBASE, CENTRAL, PROSPERO, CareSearch, and OpenGreywith reference chaining and hand-searching from inception to 31 March 2017, including all randomised controlled trials withadvance care planning for cancer patients in the last 12 months of life. Cochrane quality assessment tool was used for qualityappraisal.Results: Nine randomised controlled trials were included, with only four articulated conceptual models. Mechanisms through whichadvance care planning improved outcomes comprised (1) increasing patients’ knowledge of end-of-life care, (2) strengtheningpatients’ autonomous motivation, (3) building patients’ competence to undertake end-of-life discussions and (4) enhancing shareddecision-making in a trustful relationship. Samples were largely highly educated Caucasian.Conclusion: The use of conceptual models underpinning the development of advance care planning is uncommon. When used, theyidentify the individual behavioural change. Strengthening patients’ motivation and competence in participating advance care planningdiscussions are key mechanisms of change. Understanding cultural feasibility of the logic model for different educational levels andethnicities in non-Western countries should be a research priority

Primary care physicians’ educational needs and learning preferences in end of life care:A focus group study in the UK

BACKGROUND: Primary care physicians (General Practitioners (GPs)) play a pivotal role in providing end of life care (EoLC). However, many lack confidence in this area, and the quality of EoLC by GPs can be problematic. Evidence regarding educational needs, learning preferences and the acceptability of evaluation methods is needed to inform the development and testing of EoLC education. This study therefore aimed to explore GPs’ EoLC educational needs and preferences for learning and evaluation. METHODS: A qualitative focus group study was conducted with qualified GPs and GP trainees in the UK. Audio recordings were transcribed and analysed thematically. Expert review of the coding frame and dual coding of transcripts maximised rigour. RESULTS: Twenty-eight GPs (10 fully qualified, 18 trainees) participated in five focus groups. Four major themes emerged: (1) why education is needed, (2) perceived educational needs, (3) learning preferences, and (4) evaluation preferences. EoLC was perceived as emotionally and clinically challenging. Educational needs included: identifying patients for palliative care; responsibilities and teamwork; out-of-hours care; having difficult conversations; symptom management; non-malignant conditions; and paediatric palliative care. Participants preferred learning through experience, working alongside specialist palliative care staff, and discussion of real cases, to didactic methods and e-learning. 360° appraisals and behavioural assessment using videoing or simulated interactions were considered problematic. Self-assessment questionnaires and patient and family outcome measures were acceptable, if used and interpreted correctly. CONCLUSIONS: GPs require education and support in EoLC, particularly the management of complex clinical care and counselling. GPs value mentoring, peer-support, and experiential learning alongside EoLC specialists over formal training

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Kartoffelausgabe im Hof des städtischen Ernährungamte

Implementation of a complex intervention to improve care for patients whose situations are clinically uncertain in hospital settings: A multi-method study using normalisation process theory

Purpose: To examine the use of Normalisation Process Theory (NPT) to establish if, and in what ways, the AMBER care bundle can be successfully normalised into acute hospital practice, and to identify necessary modifications to optimise its implementation. Method: Multi-method process evaluation embedded within a mixed-method feasibility cluster randomised controlled trial in two district general hospitals in England. Data were collected using (i) focus groups with health professionals (HPs), (ii) semi-structured interviews with patients and/or carers, (iii) non-participant observations of multi-disciplinary team meetings and (iv) patient clinical note review. Thematic analysis and descriptive statistics, with interpretation guided by NPT components (coherence; cognitive participation; collective action; reflexive monitoring). Data triangulated across sources. Results: Two focus groups (26 HPs), nine non-participant observations, 12 interviews (two patients, 10 relatives), 29 clinical note reviews were conducted. While coherence was evident, with HPs recognising the value of the AMBER care bundle, cognitive participation and collective action presented challenges. Specifically: (1) HPs were unable and unwilling to operationalise the concept of ‘risk of dying’ intervention eligibility criteria (2) integration relied on a ‘champion’ to drive participation and ensure sustainability; and (3) differing skills and confidence led to variable engagement with difficult conversations with patients and families about, for example, nearness to end of life. Opportunities for reflexive monitoring were not routinely embedded within the intervention. Reflections on the use of the AMBER care bundle from HPs and patients and families, including recommended modifications became evident through this NPT-driven analysis. Conclusion: To be successfully normalised, new clinical practices, such as the AMBER care bundle, must be studied within the wider context in which they operate. NPT can be used to the aid identification of practical strategies to assist in normalisation of complex interventions where the focus of care is on clinical uncertainty in acute hospital settings