Cicely Saunders International

<h3>Background</h3> People of all ages from minority ethnic groups experience disadvantage in their access to, and use of, palliative care services. Palliative care services often struggle to address cultural, linguistic and systemic barriers to care, leading to late referrals and unmet needs at the end of life. Research investigating potential solutions is needed. <h3>Methods</h3> The aim is to explore how access to, and the experience of, palliative care for adults and children with a life limiting condition from minority ethnic groups can be improved. A qualitative multiple case study design was deployed. Cases (defined as geographical areas across England with services providing palliative care to adults and/or children) were purposively sampled for variability regarding diversity across populations and potential care initiatives. Data collection and analysis were guided by theoretical propositions developed from a prior review. Semi structured interviews were conducted with patients, family carers, parents (from minority ethnic groups), clinicians and other stakeholders (providing care to people from minority ethnic groups). Data were analysed using thematic framework analysis. <h3>Results</h3> Cases (n=6) included 62 participants. A central theme identified was the critical role of community engagement. This could bridge the gap between services and minority ethnic groups by drawing on the assets of the community more effectively to facilitate access and care. Activities included sustained, face-to-face engagement with trusted community organisations and figures, hosting and co-delivering community information exchange events and partnership working with community volunteers and bilingual health advocates. Engagement that respected cultural and religious values was seen as essential to overcoming myths and misconceptions surrounding palliative care. <h3>Conclusions</h3> A shift towards proactive, co-produced culturally informed community driven engagement is required, building on the strengths and assets of minority ethnic communities. Meaningful engagement fosters trust, enhances awareness, and ultimately supports more equitable access to care.

<h3>Introduction</h3> Unplanned hospitalisation is frequent among people with dementia towards the end of life – often in contrast to their and their families’ preferences. Little is known about whether primary and community care service use may reduce hospitalisations for people with dementia at end of life. <h3>Aims</h3> Describe patterns of primary and community care service use among people with dementia in their last three months of life, and investigate associations with hospitalisation. <h3>Methods</h3> Secondary analysis of data from the Better End of Life (BEOL) survey, conducted in 2023 by 1,194 adults in England and Wales who had registered a non-sudden death of a family member 6-10 months prior. We are utilizing descriptive and multivariable regression analyses, focusing on decedents with dementia. <h3>Results</h3> 84% of 360 decedents with dementia (mean age 87, 60% females) were living in the community in their final months before death – home 35%, care home 65%. 49% of all decedents were hospitalised at least once during this time, 33% of whom were hospitalized more than once. An additional 12% were seen in A&amp;E or used an ambulance service. Outside of hospital, 86% had contact with a primary care GP or district nurse and 31% with palliative care specialist teams. <h3>Conclusion</h3> We will present findings from this ongoing analysis, to contribute new knowledge about how use of community and primary care services may influence hospitalisations at end of life amongst people with dementia. <h3>Impact</h3> Our findings will offer valuable insights into the type of care that can enable people with dementia to remain in their preferred place of care. To optimize the real-world Impact of these findings we are already leveraging existing policy and practice connections within the research team.

About a decade after the introduction of palliative care teaching for undergraduate nurses and medical students in Uganda, it is unclear to what extent the course impacts students' understanding, perceptions and orientation to deliver palliative and end-of-life care. To (1) explore final-year nursing and medical students' knowledge and perceptions of palliative and end-of-life care, (2) examine students' orientation and perceived self-efficacy to provide palliative and end-of-life-care. A multicentre exploratory qualitative study. A total of 82 undergraduate nursing and medical students were selected from seven medical and nursing schools in Uganda. Data were collected through 10 face-to-face focus group discussions using a pilot-tested interview guide and analysed using inductive thematic analysis. Five master themes emerged: (1) Palliative care as a concept with multiple meanings, (2) Misinformation about palliative care, opiates and pain management, (3) Students' experiences of the course, (4) Dilemmas in knowledge and action, and (5) Palliative and end-of-life care as emotional labour. Participants generally had inadequate and varied understanding of, and very few demonstrated low willingness and limited confidence to provide, palliative and end-of-life care. They blamed this mainly on the huge emotional labour of palliative/end-of-life care and inadequate teaching and/or limited clinical exposure.

Racial inequities in hospital-based care for Black adults are well-documented, yet the mechanisms by which interpersonal and institutional racism contribute to these inequities remain poorly understood. Non-clinician hospital staff, such as patient care assistants, spend significant time with patients and are often members of minoritized communities, yet their perspectives on racism in the hospital are rarely studied. To investigate non-clinician staff members' perspectives on how interpersonal and institutional racism affect hospital-based care for Black adult patients. Qualitative study using in-depth, semi-structured interviews and community-based participatory research principles. Fifteen hospital staff members (patient care assistants, custodians, transporters, and ward clerks) from a large, urban, academic medical center on the West Coast. Participants self-identified as Black (27%), Hispanic (20%), and/or Asian (53%). Semi-structured interviews explored respondents' perspectives on racism in the hospital. Interviews were analyzed using thematic analysis. A Community Advisory Board of eight Black individuals provided feedback and member checking. Five themes emerged from the data: (1) staff members experienced workplace racism; (2) racial stereotypes appeared to contribute to inequitable care for Black patients; (3) institutional factors, such as inadequate staffing, were felt to contribute to inequitable care; (4) individual factors, such as going "above-and-beyond" job responsibilities, helped mitigate inequitable care; and (5) institutional diversity, equity, and inclusion (DEI) interventions received mixed appraisals, with staff often excluded from initiatives. Inequities in hospital-based care for Black patients may have roots in complex interactions between individual biases, workplace discrimination, institutional factors, and systemic underinvestment in non-clinician staff. Respondents perceived that institutional factors, such as inadequate staffing and demanding workloads, amplified racist beliefs, resulting in inequitable care for Black patients. Hospitals should invest in non-clinician hospital staff and address structural factors impeding staff members' ability to provide equitable care to all patients.

ABSTRACT Introduction Progressive functional decline is a defining feature of cancer cachexia. We evaluated the effects of multicomponent interventions for adults with cancer cachexia on physical function outcomes. We also explored whether changes in physical function outcomes or overall quality of life varied following interventions with or without components directly targeting physical function (e.g., exercise training). Methods We analysed functional outcomes from studies included in our published systematic review of multicomponent interventions for adults with cancer cachexia, supplemented with an updated search. We conducted meta‐analyses of change scores from randomised trials comparing physical function outcomes following multicomponent interventions versus standard care. Exploratory analyses of standardised effect measures, including studies of any design, compared interventions based on whether or not they directly targeted physical function. Results We analysed data from 35 studies of multicomponent interventions, 19 of which included components directly targeting physical function. Handgrip strength was on average 1.06 kg greater (95% CI, −0.72–2.84 kg), and 6‐min walk distance was on average 16.20 m greater (95% CI, −38.27–70.67 m), following multicomponent intervention compared with standard care. Exploratory analysis showed improvement in fatigue was highest following an intervention with a specific fatigue self‐management component (standardised mean change: 4.76). Standardised mean change in quality of life was slightly lower following interventions with components directly targeting physical function (0.28 vs. 0.59) though effects were varied. Conclusions Multicomponent interventions appear to be superior to standard care for improving some measures of physical function for adults with cancer cachexia, namely, handgrip strength and the 6‐min walk distance. Interventions targeting specific aspects of physical function (e.g., fatigue) may lead to greater improvements in those outcomes.

Patients with advanced dementia and suspected pneumonia are at high risk of death. Antibiotics are commonly prescribed for these patients; however, there is little evidence that treatment meaningfully prolongs life, improves quality of life, or promotes comfort. At the same time, treatment with antibiotics in this population has potential side effects, contributes to antibiotic overuse, and may be burdensome for these frail patients who are near the end of life. This Tomorrow’s Trial reviews the existing evidence, and the article proposes a trial to address the question, “Do Antibiotics Improve Survival, Quality of Life, and Comfort in Patients with Advanced Dementia and Pneumonia?”

PurposeAdvanced non-small cell lung cancer (NSCLC) is associated with a high symptom burden that negatively impacts daily functioning and quality of life. A better understanding of the time course and relationships between these constructs can help tailor rehabilitation interventions in the context of disease progression. The objectives were to describe and compare the trajectories in mobility, participation, and symptom burden and to assess associations and explore predictors of mobility change.MethodsSecondary data analysis of a longitudinal cohort study of 110 participants with NSCLC. Mobility and participation were measured using the WHODAS 2.0 subdomains, and symptom burden was measured using the POS-S. Data at baseline, 2, 4, and 6 months were analysed using repeated measures ANOVA and regression models. Change scores were compared over time, and multiple linear regression identified predictors of mobility change.ResultsOverall, mobility and symptom burden remained stable, whilst participation scores showed improvement at 4 and 6 months (p < 0.05). Both improvements and declines in mobility status were correlated with changes in participation (r = 0.297–0.462, p < 0.001) and symptom burden (r = 0.151–0.368, p < 0.05). Baseline symptom burden was a significant predictor of mobility change, even after adjusting for demographic and clinical variables (p = 0.003).ConclusionImprovements in participation despite stable mobility and symptom burden suggest an adaptive response and/or benefit from care. Mobility, related to both symptom burden and participation, offers a functional indicator that could be used to focus rehabilitation in advanced NSCLC.

Dementia, is a leading cause of death internationally, affecting 55 million people. A palliative approach, emphasizing holistic and psychosocial care, is increasingly recognised as essential for addressing the complex needs of people with dementia and their carers. However, little research has explored the interface between psychosocial interventions for people with dementia near the end of life and palliative care, necessitating a synthesis to guide integrated, person-centred care. To establish a framework of evidence-based psychosocial interventions in dementia palliative care. We conducted a systematic review using narrative synthesis. Three electronic databases (Epistemonikos, MEDLINE and ASSIA) were searched (January 1980-May 2024), for systematic reviews, guided by the methods of Cochrane overview of reviews. This is part of a series of reviews with the focus for this manuscript on psychosocial interventions for people with dementia. Thirty-four reviews were included, published between 2009 and 2023. No reviews of interventions covered all domains of dementia palliative care. The majority focussed on neuropsychiatric symptom management and promoting wellbeing. There were no reviews which covered managing care transitions, continuity of care and care co-ordination, or information for people with dementia. There is significant progress in the development and evaluation of interventions targeting behavioural and psychological symptoms of dementia (BPSD). However, a critical gap persists in addressing other essential aspects of quality of life and dementia care, with a notable gap in addressing many crucial aspects of palliative dementia care, such as care co-ordination, transitions, and carer support.

BackgroundUnderstanding the fundamentals of end-of-life communication by nursing staff as part of advance care planning with older people and their family caregivers can enhance nurse education, research, and practice in end-of-life communication. We developed a preliminary theoretical framework based on previous studies, incorporating literature and perspectives from nursing staff, older people, and family caregivers. Reflection and discussion from these groups— as well as from physicians and spiritual caregivers with whom nursing staff most often collaborate in advance care planning—should be included to ensure accuracy and enrich the framework.ObjectiveTo enrich and provide a multiple discipline perspective on a preliminary theoretical framework for end-of-life communication by nursing staff as part of advance care planning with older people.MethodsFive semi-structured focus group interviews were conducted. Four focus groups were discipline-specific, and one included various disciplines. Data were analyzed using framework analysis; the five overarching themes and twenty fundamentals from the preliminary theoretical framework served as the coding structure.ResultsTen nursing staff members, eight physicians, seven spiritual caregivers, and eight patient-family caregiver representatives participated. The interview results enriched the framework and understanding of end-of-life communication. Participants emphasized the importance of prioritizing mutual trust over a long-term relationship, distinguishing between feeling able and being able to talk about the end of life, not having an intended outcome for the conversation other than seeking connection, and prioritizing silence over speaking to ensure that older people and family caregivers feel seen and heard.ConclusionNursing staff, typically very proactive professionals, may need to step back, reflect, remain silent, and sit down to connect with older people and family caregivers. The revised theoretical framework can help nursing staff become aware of, learn from, prepare for, engage in, and evaluate person-centered end-of-life communication that respects the values, needs, and preferences of the older person, their family caregivers, and themselves.

<bold>Background:</bold> The effectiveness of opioids for breathlessness seen in laboratory-based studies has not been replicated in clinical trials. We aimed to assess the effectiveness of oral morphine for breathlessness in long-term conditions. <bold>Methods:</bold> This 11-centre, phase-3, parallel-group, double-blind, placebo-controlled trial randomised (1:1, stratification: site, causal disease) consenting adults with modified Medical Research Council breathlessness ≥3 due to cardio-respiratory conditions to 5-10mg twice-daily oral long-acting morphine/placebo (blinded laxative; 56 days). Primary outcome; Day-28 worst breathlessness/24 hours numeric rating scale (NRS). Secondary outcomes included: physical activity levels; worst cough NRS; quality of life; morphine-related toxicities. Primary analysis: repeated measures analysis of covariance adjusted for baseline worst breathlessness and stratification variables. <bold>Findings:</bold> Between 18th March 2021 and 26th October 2023, we randomised 143 participants (75 morphine, 68 placebo); 140 formed the modified intention-to-treat population (90% power; males 93/140 (66%); mean age 70.5 [SD 9.4]). By Day-28, 60/73 (82%) morphine versus 56/67 (84%) placebo participants had ≥90% adherence. We found no evidence of a Day-28 primary outcome difference (morphine 6·19 [5·57, 6·81], placebo 6·10 [5·44, 6·76]; adjusted mean difference [AMD]; 0·09 [95% CI -0·57, 0·75], p=0·78), or any secondary measure except increased moderate/vigorous physical activity (AMD; 9·51 mins/day (0·54, 18·48); not significant after multiple measures correction). Evidence of improved cough was seen at Day-56 (AMD; -1·41 [-2·18, -0·64]). The morphine group had more adverse events (251 versus 162); serious adverse events (15 versus 3; 3 and 0 related respectively), and more study drug withdrawals (13 versus 2). There were no treatment-related deaths. <bold>Interpretation:</bold> We found no evidence that morphine improves worst breathlessness intensity. Further research is needed to understand if there is any role of morphine in chronic breathlessness, but our findings do not support its use in this setting. <bold>Funding:</bold> This study is funded by the NIHR Health Technology Assessment programme (HTA Project:17/34/01)