Palliative Medicine

Background: Palliative care services appear less able to reach people from ethnically diverse communities and if they do, people from these communities report having different and often poorer experiences. The barriers to access are well described so research investigating potential solutions is needed. Aims: To understand how improved palliative care outcomes for people from ethnically diverse communities have or could be achieved, and what contextual issues have influenced these outcomes. Methods: Qualitative multiple case study. The cases were defined as areas across England with services providing generalist or specialist palliative care to adults and/or children. Interviews were conducted with patients, family carers, parents (from ethnically diverse communities), health and social care professionals. Data were analysed using thematic framework analysis. Findings: Cases (n=6) included 71 participants. Five solution focused themes were identified; how the conditions for culturally and spiritually safe care are created; engagement and trust building between ethnically diverse communities and the providers that serve them as a mechanism to promote access; workforce composition and diversity helping to bridge the gap between ethnically diverse communities and services; how communication practices enable equitable care for people who have English as an additional language and organisational commitment and partnership as drivers of sustainable change. Conclusions: Equitable access to quality palliative care is not a marginal policy issue with the economic and moral argument for change strong. Care systems need to recognise, partner with, and build upon existing community strengths. Change requires intent, accountability, leadership and the reallocation of attention and responsibility.

BackgroundHigh-quality evidence suggests that specialist palliative care reduces the odds of dying in hospital. The associated economic implications have not been established. AimTo evaluate the cost-effectiveness of home- and hospital-based specialist palliative care for adults in England. DesignHealth-economic decision-modelling using five-state Markov cohort models with a 24-hour cycle and lifetime horizon. Setting/participantsWe evaluated home- and hospital-based care separately for adults in England with poor prognosis. We modelled treatment counterfactuals using Cochrane review evidence of specialist palliative care treatment effects on place of death and quality of life. We estimated place of death distributions, utilisation, unit costs and quality-adjusted life years, and intervention costs, from the literature. ResultsHome specialist palliative care was associated with reduced costs of {pound}7,908 per person (95% confidence interval: -18,044 to 395) and increased quality-adjusted life years by 0.035 per person (0.033 to 0.037). Hospital specialist palliative care reduced costs by {pound}6,480 per person (-11,482 to -1,671) and increased quality-adjusted life years by 0.033 per person (0.031 to 0.035). We estimated that for England in 2022, specialist palliative care supported over 20,000 people to die outside of hospital, saved approximately 1.5million hospital bed days and reduced system expenditures by {pound}817million. ConclusionSpecialist palliative care reduces hospital bed days, deaths in hospital and healthcare costs, as well as improving quality of life, among adults in England. A minority who might benefit currently receive specialist palliative care and needs are growing rapidly. Expanding access would likely yield further gains. Key statementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LISpecialist palliative care increases odds of dying outside hospital and improves patient quality of life, but this is a complex intervention and not all who might benefit receive this specialist care. C_LIO_LICost-effectiveness of specialist palliative care, and the economic implications of reduced hospital deaths, is a persistent evidence gap for research and policy. C_LI What this paper adds?O_LIWe used decision modelling, a widely-used method in health economics that has not been routinely applied in evaluating palliative care. The key strength of this approach is the capacity to combine data from different sources to estimate cost-effectiveness when there is insufficient trial data to answer the question. C_LIO_LIWe found that both hospital-based specialist palliative care and home-based specialist palliative care for adults in England represent excellent value care, reducing the average cost per patient to the NHS while improving patient outcomes. C_LI Implications for practice, theory or policyO_LISpecialist palliative care is currently accessed by less than half of people who might benefit in England. Expanding access would likely yield further cost-savings and improve outcomes for patients and families. C_LIO_LIOther countries interested in applying these methods to their own data and services can consider using our methodological templates, which we have published open access. C_LI

BackgroundPeople with palliative and end-of-life care needs in the community and their carers often rely on out-of-hours services to remain at home. Policymakers internationally have recommended implementation of telephone advice lines to ensure 24-hour access to support. However, little is known about their effectiveness. AimTo review the evidence for the clinical and cost effectiveness of out-of-hours-telephone advice lines for adults with palliative care needs living at home and their carers, and report service characteristics associated with effectiveness. DesignRapid systematic review, with narrative synthesis (PROSPERO ID: CRD42023400370). Data sourcesThree databases (Medline, EMBASE, CINAHL) were searched in February 2023 for studies reporting on telephone advice lines with at least partial out-of-hours availability. Study quality was assessed using the Mixed Methods Appraisal Tool. ResultsTwenty-one studies, published 2000-2022, were included. Most studies were observational; none were experimental. Three were comparative, and seven lacked explicit research questions or methods. Results were largely descriptive, focusing on service development and use, and process measures. Patient and carer outcomes were primarily reported qualitatively. Only two studies investigated possible system outcomes, by examining care-seeking behaviour after using telephone advice lines. ConclusionExisting evidence for the effectiveness of telephone advice lines is limited. The lack of experimental studies evaluating individual or system-level outcomes prevents assessment of the effectiveness/cost-effectiveness of service models. There is a clear need for more rigorous evaluations using consistent reporting, and inclusion of patient and carer perspectives during both development and implementation. Recommendations for future evaluations are provided. Key statementsO_ST_ABSWhat is already known about the topic?C_ST_ABS- Urgent and unplanned emergency department and hospital admission is frequent for people in the final months of life. - Designated palliative care telephone advice lines have been recommended internationally to ensure round-the-clock access to support from trained professionals and are proposed to help reduce urgent and unplanned use of acute services. - While a range of palliative care telephone advice lines exist, the evidence base for their effectiveness, in terms of patient and service use outcomes, is not known. What this paper adds- This review provides an overview of published articles reporting palliative care telephone advice line models that have been developed and implemented. - We demonstrate that existing research evidence for the effectiveness of telephone advice lines is limited and largely based on observational studies of insufficient methodological quality. - Our synthesis of findings suggests telephone advice lines can offer guidance and reassurance that supports family carers in providing care at home for patients who prefer to die at home. Implications for practice, theory or policy- Future development and evaluation of telephone advice lines need to include patients, carers, and other stakeholders to better understand what needs and preferences should shape the services. - To address the limited and variable evidence identified, we provide recommendations for key components of structure and use of telephone advice line models that should be included in future research.

BackgroundPeople living at home with advanced illness require around-the-clock care. Telephone-based advice lines are critical for accessing help, yet evidence is limited. AimTo explore out-of-hours telephone-based advice lines available to adults living at home with advanced illness and their carers across the UK, and construct a practical framework to improve services. DesignStructured qualitative interviews with thematic analysis. A patient and public involvement workshop was conducted to refine the proposed framework. Setting/participantsProfessionals with palliative/end-of-life care commissioning responsibilities, or knowledge of out-of-hours service provision, were purposively sampled to ensure UK-wide representation. ResultsSeventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability: Ten models of advice lines were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion: It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities: Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from simply signposting to organising home visits. Integration/continuity of care: Integration between care providers was limited by electronic medical records access and information sharing. Service structure/commissioning: Sustained funding was often an issue for charitably funded organisations. ConclusionsMultiple advice lines lead to confusion and delays in obtaining care, as many default to general out-of-hours advice lines. Dedicated advice lines are valuable for patients with advanced illness as long as they are implemented well. A practical framework (including a comprehensive overview of components) is provided for guiding how these are delivered. Key statementsWhat is already known about the topic? O_LIPeople living at home with advanced illness and those that care for them need access to dedicated palliative and end-of-life care 24 hours a day, 7-days a week. C_LIO_LIWhile understanding of telephone advice lines often exists at a single service level, there is limited knowledge in terms of national provision. C_LI What does this paper add? O_LIThis qualitative study provides an understanding of multiple telephone-based advice line services available out-of-hours at a national-level, and identifies a lack of consistency and challenges with integration between available services. C_LIO_LIPromotion of dedicated advice lines (or an area equivalent) needs to ensure that people with advanced illness are aware of how to access such support, but there is variation in how this is done. C_LIO_LIIncorporating the views of patients with advanced illness and carers in the development of telephone-based advice is essential to ensure the care delivered is centred around their needs. C_LI Implications for practice, theory or policy O_LIThe practical framework developed in this research (using key considerations from professionals based on structured interviews and a patient and public involvement workshop) can be used to guide commissioners and service providers. C_LI

ObjectivesIn this study, the clinical and non-clinical factors that may influence the provision of palliative/end of life care in long-term high security prisons in England and Wales are identified through the lens of Prison and Probation Ombudsman (PPO) fatal incident reports. MethodsThis work extends that of McParland and Johnston (2019) and contemporary literature published in the subsequent period to 2020 through a thematic analysis of fatal incident reports published by the PPO in the period 2014-2020. The results are discussed in context of the Dying Well in Custody Charter and positioned within the extant literature. ConclusionsThe results suggest that prisoners in long-term high security prisons who are receiving palliative care are more likely than not to receive care that is comparable to that in the community. Directions for further research are also identified.

An understated disruption to health services brought about by the Covid-19 pandemic was the increase in deaths occurring outside a hospital. Since quality of end-of-life care is typically monitored through place of death and hospital activity, a new approach focused on care in community settings is needed. In this study, we aimed to test whether patient-centric measures of quality at the end of life can be derived from primary care electronic records. With the approval of NHS England, analysis was undertaken in OpenSAFELY-TPP using electronic health care records of over 970,000 patients who died between March 2019 and August 2023, covering periods before, during and after the pandemic. We developed two new measures of end-of-life care quality--specialist palliative care team contacts and advance care planning, and tracked the proportion of patients with these records, categorized by place and cause of death, along with an existing measure indicating palliative care needs. The proportion of people with a GP record of specialist palliative care was 4-5% on average, higher for those who died of cancer or died in a hospice. Advance care planning records increased from 19% to 27% (barring a decrease following the onset of the Covid-19 pandemic) driven in large part by increases for patients who died in care homes. Advance care planning and recording of palliative care needs were plausible measures to track changes in care, unlike the specialist palliative care measure where recorded use was sparse. Improved coding in primary care records would improve reliability of measures. Key messagesO_LIQuality of end-of-life care is traditionally measured by how patients use health services (for example emergency department attendances) C_LIO_LIWe used routine GP health records to track aspects of end-of-life care quality which matter to patients and discuss the impact of the covid-19 pandemic on these quality measures C_LIO_LIA new measure of advance care planning and the existing palliative care needs measure could be used to track end of life care delivered in the community C_LIO_LIThe measure of specialist palliative care was sparsely coded and unlikely to be useful unless coding and data linkage between GP and other systems improves C_LI

End-of-life caregiving represents one of the most demanding experiences for informal caregivers who often sacrifice their own well-being while supporting dying loved ones. This systematic review protocol presents a comprehensive framework for synthesizing evidence on factors influencing caregiver well-being in end-of-life care settings. Using the SPIDER framework (Sample, Phenomenon of Interest, Design, Evaluation, Research type), we will investigate caregiver experiences across physical, psychological, social, and spiritual well-being dimensions. Eight electronic databases (PubMed, Web of Science, Embase, CINAHL, MEDLINE, Cochrane Library, PsycINFO, Scopus) will be searched from inception to June 2025. Eligible studies include quantitative, qualitative, and mixed-methods research examining factors associated with caregiver well-being in hospice, palliative, and terminal care contexts. Covidence software will facilitate systematic screening, data extraction, and quality assessment by two independent reviewers using design-specific appraisal tools. Data synthesis will employ a convergent integrated approach combining narrative synthesis with meta-analysis where appropriate. Quality assessment will utilize JBI checklists, Newcastle-Ottawa Scale, and CASP tools, with evidence certainty evaluated using GRADE and GRADE-CERQual. This protocol follows PRISMA-P guidelines and will be registered with PROSPERO. Findings will inform evidence-based interventions and policies supporting the millions providing essential end-of-life care.

ObjectivesCurrent methods of health expenditure reporting make spending on palliative care services difficult to quantify. This paper (1) examines trends in the components of government (public) spending on health-related long-term care reported in the UK Health Accounts for the period of 2013 to 2022 to establish the wider context of palliative care expenditure, and (2) relates these trends to existing knowledge of expenditure on specialist palliative care services in the UK. MethodsWe conducted a descriptive secondary analysis of annually reported government expenditure on health-related long-term care between 2013 and 2022 from the UK Health Accounts dataset. We contrasted this with UK governmental and non-governmental spending on specialist palliative care services using annual expenditure figures reported by Hospice UK. ResultsReal-terms UK government spending on health-related long-term care grew by {pound}6.4 billion (22.9%) between 2013 and 2022, from {pound}27.9 to {pound}34.3 billion. Real-terms spending on specialist palliative care grew by {pound}110 million (10.7%) over the same period, from {pound}1,027 to {pound}1,137 million. In 2022, spending on inpatient care comprised the majority of government health-related long-term care expenditure ({pound}22.6 billion; 65.9%). Home-based care comprised one-third ({pound}11.8 billion; 33.4%). Outpatient care accounted for 0.7% ({pound}260.2 million). Equivalent data was not available for analysis of specialist palliative care expenditure. ConclusionsLow granularity of UK national health expenditure accounts limits national and international comparisons of spending on palliative care. However, it is clear that UK expenditure on specialist palliative care services has not kept pace with growth in expenditure on health-related long-term care. What is already known on this topicO_LIGlobal demand for palliative care is increasing as rates of serious life-limiting illness, dementia, cancer and multiple long-term conditions rise internationally. C_LIO_LIIncreasing complexity of illness and population ageing are two factors implicated in both rising healthcare expenditure and growing demand for palliative care internationally. C_LIO_LIThe UK has previously been ranked as providing the highest quality of palliative care amongst international competitors - however, concerns about the longevity of funding sources for specialist palliative care services has led to calls for further investment. C_LI What this study addsO_LIReal terms UK government spending on health-related long-term care - which includes, but is not limited to, palliative care services - increased by 22.9% between 2013 and 2022. C_LIO_LIOver the same period, UK spending on specialist palliative care services as reported by Hospice UK grew by only 10.7%. C_LIO_LIOur results take into account health-related social care spending, which forms a key part of care for people living with illness, including those receiving palliative care services. C_LI How this study might affect research, practice or policyO_LIThe future of funding for specialist palliative care in the UK is uncertain, and current funding frameworks are complex. This paper adds to ongoing policy discussions surrounding this issue, highlighting the discrepancy between growth in public sector spending on health-related long-term care and overall spending on specialist palliative care services (from governmental and non-governmental sources). C_LI

Objectives To explore the acceptability and tolerability of cranial electrotherapy stimulation (CES) using Alpha-Stim AID as a potential intervention for anxiety associated with breathlessness in people with advanced chronic respiratory disease. Methods A multicentre, mixed-methods, non-randomised interventional feasibility study with a parallel usual-care control group. Participants were adults with chronic respiratory disease and significant anxiety and breathlessness symptoms (assessed via Integrated Palliative Outcome Scale) receiving care from hospice services. The intervention groups used Alpha-Stim AID for eight weeks either at a fixed or personalised dose, followed by a four-week follow-up period. This feasibility study was not powered to assess clinical efficacy. Results 12.5% of screened patients at the primary site were eligible, and 29 unique participants were recruited. Three participants withdrew from the study (10.3%), none of which were attributable to CES. Most adverse events were mild, with headache reported frequently across control and intervention groups. Outcome measure completion was high, with data missingness below 6.4%. Numerical rating scales of anxiety and breathlessness fluctuated daily and remained broadly static, whereas GAD-7 scores assessing anxiety improved over time across all groups. This feasibility study was not powered to assess clinical efficacy. Conclusion CES using Alpha-Stim AID was deliverable within hospice services and was generally acceptable and tolerable among participants who enrolled. Our findings support further evaluation which should involve a fully-powered randomised controlled trial against a sham device to determine whether CES provides clinically meaningful improvements in anxiety for this patient population.

Aim(s)To describe adult palliative and end-of-life care provision by community health nursing services using a: O_LINational dataset (2013-2024) to report patterns in service provision over time. C_LIO_LIRegional dataset (2022/23, 2023/24 and 2024/25) to describe palliative and end-of-life care activities. C_LI DesignSecondary analyses of existing national and regional datasets. MethodsWe used national data to describe the populations served; workforce; referrals; unique service users seen annually; contacts; time on caseload; care delivered/care locations; support to other teams/processes; and deferred care. Regional data was used to examine palliative and end-of-life care activities in the context of all nursing care delivered. ResultsNationally, referrals to community health nursing services increased steadily from 4,000 to 6,000 per 100,000 weighted population between 2013 and 2024, while unique service users remained stable (around 2,600-2,800). Median average time on caseload reduced markedly from over 150 days to around 50 days, despite stable contact frequency (median 23 total contacts per service user) and duration (median 26 minutes for face-to-face contacts). Regional data showed that palliative and end-of-life care consistently accounted for 9.6% of all community nursing clinical time (30-32 hours per 1,000 population annually) across three years, even as total care hours declined. A disproportionate amount of palliative and end-of-life care occurred out-of-hours. ConclusionIncreasing referrals and shorter time on caseloads indicate a system under pressure. Time spent on palliative and end-of-life care by community health nursing teams has remained stable over time, despite growing population need. Workforce capacity, skill mix, and out-of-hours provision need to align to support high-quality, person-centred care in the community. Implications for the profession and/or patient careThis evidence informs better planning to ensure sufficient provision and workforce in community health nursing. Patient and public contributionPatients, family carers and public members contributed to interpreting findings and implications for practice. What does this paper contribute to the wider global clinical community?O_LIProvides combined national and regional data to describe the scale and nature of palliative and end-of-life care delivered by community health nursing services over time. C_LIO_LIFindings give a detailed picture of how community health nursing services are under pressure because of increasing referrals and being required to deliver a greater breadth of tasks. C_LIO_LIModels of community health nursing are changing with shorter care episodes and significant palliative and end-of-life care workload (with distinctive challenges out-of-hours). C_LI

BackgroundDemand for community-based end-of-life care is rising globally, driven by ageing populations with increasingly complex needs. Community nurses have a central role in providing end-of-life care, yet the proportion of their time spent in supporting people in their final year of life remains unclear. AimsTo investigate how much of community nurses daily work involves caring for people in their last year of life, and the extent to which end-of-life care visits are cancelled, deferred or undertaken to unsatisfactory standards. DesignAnonymous online survey and multimethod analysis. Setting/participantsUnited Kingdom survey of community nurses, circulated via professional networks, social media and snowball sampling, between 28 April and 27 June 2025. ResultsA total of 1,471 nurses responded. Most worked in community and district nursing services (78.6%, 1156/1471) or specialist palliative care services (11.8%, 174/1471). Community and district nurses spent 23.5% (median) of their last shift providing end-of-life care. Over one in ten respondents (11.6% (171/1471) reported deferring at least one end-of-life visit during their last shift. Specialist palliative nurses were twice as likely to defer visits compared to community and district nurses (OR=2.48, 95% CI: 1.63-3.72, p<0.001). Staff shortages, demand exceeding capacity, and other systematic barriers contributed to deferring visits. ConclusionsCommunity nurses play a vital role in end-of-life care, yet some of this important patient care is left undone or deferred. Investment in core and specialist nursing services, with efforts to enable and sustain this workforce, is urgently needed to meet globally growing demand for community-based end-of-life care. What is already known about the topic?O_LIDemand for community end-of-life care is growing in many countries. C_LIO_LICommunity nurses play a key role in end-of-life care, yet the volume and complexity of their daily work supporting people in the last year of life remains poorly understood. C_LI What this paper addsO_LINurses working in community and district nursing services spent a median of 23.5% of their last clinical shift providing end-of-life care. C_LIO_LIHalf (52%) of respondents who provided end-of-life care during their last shift reported delivering one or more aspects of this care below their professional satisfaction, due to workload and capacity issues. C_LIO_LIOver one in ten (11.6%) of nurses reported having deferred or cancelled end-of-life care visits on their last shift, significantly more specialist palliative care nurses (24%) than community and district nurses (10.4%). C_LI Implications for practice, theory or policyO_LIOur findings reveal a notable proportion of deferred and cancelled end-of-life care visits and care not undertaken to nurses professional satisfaction. C_LIO_LISustained, intentional investment in core and specialist nursing services, together with improved system-wide integration, is needed to support this vital workforce. C_LIO_LIFurther research is necessary to understand how community and district nurses and specialist palliative care nurses can most effectively prioritise end-of-life care within finite resources and competing demands. C_LI

BackgroundAcceptance of death is an important aspect of a good death and an indicator of high-quality palliative care. Limited evidence exists on the extent to which patients accept their approaching death and which socio-demographic or end-of-life care characteristics are associated with acceptance, in both cancer and non-cancer patients. MethodsWe conducted a retrospective cross-sectional survey in representative GP networks in the Netherlands and Italy (2013-2015), and Belgium and Spain (2013-2014). GPs registered all deceased adult patients in their practice, reporting health and care characteristics in the last three months of life and the level of acceptance of approaching death on a four-point scale ("1. Yes, completely" to "4. No, not at all"). Non-sudden deaths were included, totaling 2,796 patients (1,474 cancer; 1,322 non-cancer). ResultsAcceptance was recorded for 97% of patients (n=2,713), of which 17% were assessed as unknown. GPs assessed that 30% of patients had complete acceptance, with similar proportions in cancer and non-cancer patients (30% vs 29%). Multivariable logistic regression showed that older age (OR 1.03, 95%CI 1.02-1.04, p<0.01), country (OR 0.27 Belgium, OR 0.11 Italy, OR 0.10 Spain; reference: Netherlands), and palliative care by the GP until death (OR 1.39, 95%CI 1.07-1.79, p<0.01) were independently associated with complete acceptance. ConclusionSocio-demographic, contextual, and end-of-life care factors influence GP-assessed acceptance of approaching death, whereas a cancer diagnosis does not. These findings emphasize the importance of culturally sensitive, age-appropriate, and palliative care-oriented approaches to support patient acceptance at the end of life.

This rapid review of quantitative and qualitative publications of any design indexed in PUBMED between January 2020-April 2021 investigates barriers and enablers of advancecare planning (ACP) worldwide in the early stages of the life-threatening COVID-19 pandemic. Seventy-four papers were included: 35 primary research studies (cohorts, reviews, case studies, and cross-sectional designs) and 39 commentaries. Publications from hospitals, outpatient services, aged care and community indicated widespread interest in accelerating ACP documentation to facilitate management decisions and goal-aligned care. Enablers of ACP included targeted public awareness, availability of telehealth, access to online tools and a person-centered approaches. Barriers included uncertainty regarding clinical outcomes, cultural or communication difficulties, legal and ethical considerations, infection control restrictions, lack of time, and limited resources and support systems. The opportunities for rapid implementation of ACP offered by the social distancing restrictions and high demand for health services are valuable in informing future policy and practice. What this paper addsO_LIOur study adds to existing evidence by identifying emerging barriers and creative ways of overcoming them in response to a global crisis C_LIO_LIDiscussions on death prospects and care of the dying were feasible and a step towards normalisation of advance care planning C_LIO_LIDespite new and overwhelming challenges, policies and practices could be rapidly implemented to satisfy clinicians and families in need of advance care planning C_LI Applications of study findingsO_LIThe lessons learnt can be incorporated in future health service planning since the threat of other pandemics is real C_LIO_LIA formal evaluation of effectiveness of some of the emerging strategies would be a valuable addition to the evidence C_LI

BackgroundScientifically implausible treatments are offered by some hospital cancer departments. Examples are reiki, aromatherapy, and reflexology. Salaried practitioners are employed to deliver these therapies, which are provided as palliative care, although they lack evidence of effectiveness. Such practices seem to conflict with efforts to make health care evidence based. AimTo estimate the extent of certain pseudoscientific practices in NHS Trusts, and to evaluate the rationale for such provision. DesignRelevant documents were requested from NHS Trusts under the Freedom of Information Act 2000 (FOIA). Main outcome measures were: number of trusts offering pseudoscientific practices in cancer departments, time to full FOIA response, presence and content of practice governance documents, and presence and quality of evidence for practices. Setting/ParticipantsCancer care departments in NHS hospitals in England. No patient participants were involved in the survey. Results13.6% of eligible NHS trusts were offering pseudoscientific clinical practices. No trust provided a valid business case, or any robust evidence for the practices. The governance documents included claims about chakras, meridians, and invisible "energy". Ten trusts required that informed consent be obtained from patients. This could not have been obtained because information given was misleading. ConclusionsPseudoscientific practices are embedded in the NHS in England, and governance documents show poor understanding of clinical evidence.

ObjectivesThis study tested the use of the Palliative Prognostic Index (PPI), an established cancer prognostic tool, in a general medicine group within an acute setting for non-selective adult palliative care. The PPI score ranges from 0 to 15, with scores <6 indicating a prognosis of over 6 weeks and scores >6 indicating under 3 weeks. MethodsData from 256 patients seen over three months by the Ashford and St Peters NHS Foundation Trust Palliative Care team were analysed. PPI scores were calculated and correlated with patients date of death (DoD) to evaluate predictive value. ASPH is a medium sized hospital in England with 500 adult beds. ResultsAmong 256 patients, 145 had cancer and 111 had non-malignant disease. Higher PPI scores correlated with more accurate prognostic predictions, with an overall prediction accuracy of 70%. ConclusionsThe study demonstrates the PPI tools value for mixed groups of non-malignant and malignant diseases. The ASPH population is representative of most UK areas, suggesting that the PPI tool can guide timely care decisions in general medical settings.

BackgroundThe negative impacts of the COVID-19 pandemic on bereavement experiences and grief outcomes are relatively well documented. However, less is known about the evolving support needs of people bereaved during this time, what support they used and, crucially, how this support helped (or hindered) their coping. Beyond the pandemic context, evidence of how bereavement support needs relate to the use and perceived helpfulness of different types of support is needed to inform bereavement service provision and policies. MethodsA longitudinal survey of people bereaved (any cause of death) during the COVID-19 pandemic in the UK, with data collected at four time points: baseline (T1; n = 711), c. 8 (T2; n = 384), 13 (T3; n = 295), and 25 (T4; n = 185) months post-bereavement. Support needs and use of informal and formal support sources were captured quantitatively at all time points, with the perceived helpfulness of support captured as free-text data and analysed thematically. Future support preferences were obtained in the final survey round (T4). At T2-T4, participants completed the Traumatic Grief Inventory (TGI-SR) to assess for indications of Prolonged Grief Disorder (PGD). Quantitative data were analysed descriptively. ResultsIn early bereavement, findings demonstrate high levels of support needs across multiple domains, with the highest needs at baseline relating to managing grief and feelings surrounding the loss (49.9-59.8% across 4 items), feelings of anxiety and depression (52.8%) and social isolation and loneliness (52.0%). Support needs decreased markedly over time but persisted for those with indicated PGD, of whom 44.2% at two-years post-bereavement (T4) needed help with coming to terms with how their loved one died and with expressing their feelings and feeling understood and 41.2% with loneliness and isolation. Participants primarily relied on support from family and friends, followed by online community support and one-to-one support (counselling), with support use decreasing over time. Those with indicated PGD engaged with all types of support more frequently across all time points, yet a third (35.3%) did not access any formal bereavement or mental health support during the first year following their bereavement. The qualitatively described benefits of different informal and formal support sources reflected and demonstrated their efficacy in meeting these support needs, though inadequacies in support were also highlighted, particularly from friends and family. Support preferences for future bereavements under non-pandemic circumstances most commonly included family and friends (96%), in-person one-to-one support (75%), self-help resources (63%) and GPs (61%). ConclusionFindings illustrate the multiple and varied emotional and social support needs of bereaved people, which for those with indicated PGD endured over time. While these needs can be effectively met by informal and formal support-types, dissatisfaction with support from friends and family, and under-utilisation of formal support services amongst high-risk groups, suggests significant unmet need and missed opportunities. This highlights the importance of strengthening the support available to people within their networks and communities and improving access to a wide variety of support options, according to peoples needs and preferences.

BackgroundChronic obstructive pulmonary disease (COPD) is associated with an unpredictable and complex disease trajectory. Consequently, most patients are not involved in advance care planning and do not receive palliative care until the end of life. AimTo explore clinicians experiences, opinions and recommendations for the timing and nature of palliative care discussions in COPD. DesignQualitative interviews with nurses and doctors that provide direct care to COPD patients. Setting/Participants14 clinicians working across primary and secondary care in the UK were interviewed. ResultsParticipants suggested that those with the appropriate expertize and an established relationship with patients were best placed to initiate discussions about palliative and future care. Early, gradual and informed palliative and future care discussions were considered best practice, however they uncommon occurrence due to service, patient and clinician-related barriers. The unpredictable disease trajectory and fine balance between providing acute care and discussing palliative care options were suggested as key greatest barriers for discussions. However, damaging patient hope was a concern for clinicians and reduced their inclination to discuss palliative care. Clinicians did not seem to think that patients were ready for discussions, therefore they avoided broaching the subject leading early in the disease trajectory. ConclusionStand-alone conversations about and near the end of life was described as current usual practice by clinicians, however individualised early, regular and gradual discussions with patients about immediate and long-term future plans may make such discussions feel less negative and ordinary for patients and clinicians.

BackgroundReported assisted dying cases have increased in countries with such legislation. In Belgium, where euthanasia was legalized in 2002, cases rose from 236 in 2003 to 3,423 in 2023. While most studies focus on occurrence rates, this study examines the magnitude of increase and the contribution of demographic changes observed over the period. MethodsWe analysed complete data from the Belgian Federal Commission for the Control and Evaluation of Euthanasia (FCCEE) from 2002-2023 (N=33,604). Using Poisson regression, we calculated Rate Ratios (RR) by age, gender, region, and euthanasia characteristics. We compared estimates with a model that included demographic offsets to calculate Prevalence Rates (PR) and explored interaction effects across sub-categories. ResultsThe yearly RR is 1.070, while the PR is 1.054, indicating that demographic changes significantly influence the observed increase. The PR for euthanasia among females has slightly risen (PR: 1.034), while psychiatric cases remained a small proportion (PR: 1.002). Cases citing multimorbidity have increased (RR: 1.029), whereas cases related to psychiatric disorders (PR: 0.949) and deaths in care homes (PR: 0.998) have not shown significant increases. Higher prevalence is observed in the Flemish region (PR: 1.983) but the gap has narrowed over the years. InterpretationA substantial part of the increase in euthanasia cases is attributed to demographic changes, particularly population ageing. Early increases were mainly due to the regulatory onset, while recent trends reflect a growing influence of demographic factors and regional adjustments. Considering demographic shifts is essential and long-term trends should be monitored. FundingERC (UHealth), FNRS-CQ

Social homecare workers (HCWs) play an important role in supporting people with care and support needs who wish to remain at home as they approach the end of life. However, the experiences of these HCWs have been neglected within policy and research, leaving gaps in knowledge regarding the challenges they face, and the support needed. Given the difficulties in recruiting and retaining staff in the home care sector, a better understanding of the experiences and needs of this workforce is essential. This paper reports on the findings of a multiple case study, using semi-structured interviews carried out with HCWs, managers, clients, carers (families/friends), health and social care practitioners and service commissioners. Interviews were supported by Pictor, a visual elicitation method used to map networks and relationships. 133 individuals participated across three sites in England chosen to reflect different demographic characteristics. Data were analysed using reflexive thematic analysis in NVivo 14.The findings presented here highlight three themes in respect of HCW experiences: the unique privileges and challenges of providing care at end-of-life; the relational aspects of care important at end-of-life; and the multi-agency challenges and opportunities experienced at end-of-life, with the wider factors such as policy and the care sector environment which can influence HCW experiences at work also considered.The findings are discussed in the context of an adaptation of Bronfenbrenners Ecological Systems Theory to explore the different levels operating in the community care network, and are related to current evidence with suggestions made for policy, practice and future research.

Background: Demoralization, a syndrome of helplessness, hopelessness, and loss of meaning and chronic pain are common sources of distress in early palliative care. Psilocybin-assisted therapy (PAT) is an emerging intervention with preliminary data suggesting improvements in pain and demoralization. To date, PAT has not been studied among people living with both demoralization and chronic pain nor has it been studied as part of routine multidisciplinary outpatient palliative care. Objectives: We conducted an open-label pilot study assessing the safety, feasibility, and acceptability of PAT delivered with multidisciplinary palliative care support in cancer patients across the illness trajectory living with demoralization and chronic pain. Methods: Participants received a single 25 mg oral dose of psilocybin with preparation, monitoring, and integration provided by a mental health clinician and spiritual health clinician, alongside multidisciplinary palliative care support. Outcomes included safety, feasibility, acceptability, and exploratory self-report measures assessing for demoralization and pain intensity pre- and post-dosing. Results: Eleven participants were enrolled, ten of whom received psilocybin. The intervention was safe and feasible, with no serious adverse events and complete study visit retention among dosed participants. All 10 dosed participants reported the intervention as highly acceptable. Among dosed participants, 70% rated the experience among the five most meaningful and educational of their lives, and 60% among their five most spiritually significant experiences. By study endpoint, 90% no longer met criteria for clinically-significant demoralization syndrome and had pain scores below the trial enrollment threshold. Conclusions: PAT delivered with multidisciplinary palliative care support was safe, feasible, and acceptable in demoralized cancer patients with chronic pain. Key Message: Psilocybin-assisted therapy delivered within multidisciplinary outpatient palliative care was safe, feasible, and acceptable among demoralized cancer patients with chronic pain.