Palliative Medicine

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.

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

BackgroundUnderstanding the lived experiences of people dying with frailty is essential to develop models of care that are appropriate to meet the needs of this growing population. AimSynthesise qualitative evidence on the experiences of people dying with frailty. DesignSystematic review of qualitative literature and thematic synthesis. PROSPERO registration CRD42019141907. Data sourcesFourteen electronic databases (CINAHL, Cochrane, Embase, EThOS, Google, Medline, NDLTD, NHS Evidence, NICE, Open grey, Psychinfo, SCIE, SCOPUS and Web of Science) searched from inception to May 2024. Studies were included if they reported on the lived experiences of people dying with frailty, and used an explicit measure of frailty for their sample. Quality was appraised using the Saini and Schlonsky checklist. ResultsOf 6,340 unique articles, 19 met inclusion criteria, describing the views of 138 people dying with frailty, 186 relatives /informal carers, and 240 professional caregivers. We identified three themes: Identifying with frailty and dying, Emotional needs, and Support with daily living. There was wide variation in peoples understanding of frailty, and of their proximity to death. Emotional responses to physical symptoms often had a greater impact on lived experiences than the symptoms themselves. People frequently reported a desire to live in the present, with priorities focused more on living than dying. ConclusionApproaches to palliative care for people dying with frailty should address emotional, as well as physical needs, and facilitate maintenance of existing daily routines. Ensuring that care planning accounts for individual understandings of frailty, and prognostic uncertainty may be particularly helpful. What is already known about the topic?O_LIHealth and social care professionals and policy makers recognise the need to improve equity in palliative care provision for people dying with frailty C_LIO_LIA previous systematic review of quantitative literature highlighted the diverse range of physical, psychological and social needs of people dying with frailty C_LI What this paper adds?O_LIThe narratives of people dying with frailty often focus on the emotional impact of physical symptoms, and fears around uncertainty C_LIO_LIPeople do not always recognise or identify with the concept of frailty, and unless actively dying, often express the desire to be supported to live independently for as long as possible C_LIO_LICare providers express the need for holistic care, and voice frustration at service failures, including lack of time and personnel C_LI Implications for practice, theory or policyO_LIServices for people dying with frailty should be configured to be collaborative, flexible, holistic and responsive to changing needs C_LIO_LIClinical training should emphasise the importance of monitoring patient needs, and both understanding and communicating uncertainty and unclear prognoses C_LIO_LIFuture work and funding must now concentrate on developing and evaluating appropriate models of care 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.

ObjectivesTo explore the experiences of bereaved family of anticipatory (JIC) injectable medications for symptom management and to identify ways to improve practice. MethodsA single site, mixed methods study in two phases. A postal questionnaire sent to 100 family carers (FCs) achieved a 38% response rate of whom 79% volunteered for an interview and 14 were sampled to reflect use of medication, concerns and relationship with the deceased. The descriptively analysed quantitative data and thematically analysed qualitative data were triangulated ResultsThe vast majority (89%) perceived benefits to JIC medications but 18% of these described mixed feelings and issues, related to the context of dying and the responsibility for powerful medications. Communication was a key theme and some FCs described emotional impacts, misinterpretation of the intent of the medications and many desired more information to equip and empower them. There were diverse experiences of obtaining medications and guidance on storage and disposal resulting in distressing experiences. Whilst most described good experiences of care and effectiveness of treatment 50% experienced delay in attendance of staff to administer medication. The majority of those interviewed would have been prepared to administer injections and the key driver for this was their experience of delays in resolving symptoms. ConclusionsFCs were generally positive about JIC medicines and care received but they had also been a source of distress and anxiety and people wanted more information and empowerment. Professional support had often been difficult to access at the point at which it had been needed. O_TEXTBOXKey Messages O_LIWhat was already known? O_LIAnticipatory medications for symptom management in the last days of life are promoted as good practice by NICE C_LIO_LIHealth professionals support this but have identified complexities and concerns C_LIO_LIThere is no research exploring family or patient views and experiences C_LI C_LIO_LIWhat are the new findings? O_LIFamily thought there were benefits but frequently described distressing experiences C_LIO_LIDelay in support to administer medications was common C_LIO_LIWith appropriate supervision some family care givers would consider administration C_LI C_LIO_LIWhat is their significance? O_LIJust-in-case medications are a trigger for thinking about dying. Practitioners need to anticipate that family may: O_LIRealise for the first time that their loved one is going to die C_LIO_LIThink that they are dying now, or more ill than previously suggested C_LIO_LIThink these drugs actually end life. C_LI C_LIO_LIFamily need more guidance about looking after a sick/dying person C_LIO_LIA PROM related to time to attend should be considered. C_LI C_LI C_TEXTBOX

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

ObjectivesTo explore the lived experiences of anxiety related to breathlessness in patients who are receiving specialist palliative care for advanced chronic respiratory disease (CRD), such as COPD and interstitial lung diseases. MethodsThis qualitative exploration formed part of a mixed-methods feasibility study of a novel intervention. Participants receiving specialist palliative care for CRD at two UK hospice sites engaged in semi-structured interviews. Data were analysed using thematic analysis. ResultsThree key organising themes emerged: 1) Understanding my breathlessness - participants described their breathlessness as progressive, frightening, and restrictive. 2) Understanding my anxiety - described as emotional distress with a profound physical component, often compounded by external life stressors. 3) Vicious circle interlinks breathlessness and anxiety - a circular bi-directional relationship where anxiety could not be separated from breathlessness. Participants often employed non-pharmacological strategies to manage both their anxiety and breathlessness interdependently. Significance of ResultsOur findings demonstrate the interdependency between anxiety and breathlessness for patients with a range of CRD diagnoses. The shared symptom experience across a range of CRD supports the value of unified management approaches to these two symptoms in specialist palliative care breathlessness clinics.

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

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.

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.

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.

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

BackgroundExistential suffering is often a part of the requests for assisted suicide (AS). Its definitions have gained in clarity recently and refer to a distress arising from an inner realization that life has lost its meaning. There is however a lack of consensus on how to manage existential suffering, especially in a country where AS is legal and little is known about the difficulties faced by professionals confronted with these situations. ObjectivesTo explore the perspectives of Swiss professionals involved in end-of-life care and assisted suicide on the management of existential suffering when it is part of AS requests, taking into account the question of roles, as well as on the difficulties they encounter along the way and their views on the acceptability of existential suffering as a motive for AS. MethodsA qualitative study based on face-to-face interviews was performed among twenty-six participants from the fields of palliative and primary care as well as from EXIT right-to-die organization. A semi-structured interview guide exploring four themes was used. Elements from the grounded theory approach were applied. ResultsAlmost all participants reported experiencing difficulties when facing existential suffering. Two-thirds considered existential suffering as a justifiable reason for requesting AS. Concerning the management of existential suffering, participants referred to the notion of being present, respect, explore the suffering, give meaning, working together, psychological support, spiritual support, relieve physical symptoms and palliative sedation. ConclusionThis study offers a unique opportunity to reflect on what are desirable responses to existential suffering when it is part of AS requests. Existential suffering is plural and certainly implies a multiplicity of responses as well. These situations remain however difficult and controversial according to Swiss professionals. Clinicians education should better address these issues and give them the tool to take care of patients with existential suffering.

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

BackgroundSocial homecare workers (personal aides/assistants) are crucial for people wishing to receive end-of-life care at home. AimTo determine current UK social care policy priorities and gaps regarding end-of-life care provision by homecare workers, including support and training for this workforce. DesignPolicy document review and content analysis; eligible documents were current UK policy documents informing homecare worker practice/service delivery, identified by team expertise, networks, study partners and bibliography review of included documents. We quantified (existence, frequency) predetermined codes of interest in relation to end-of-life/palliative/care of the dying/bereavement, homecare workforce, and support and training. Where homecare worker codes were contextually situated, we extracted and tabulated the surrounding text and examined for reference to training and support. We subjected extracted text content to framework analysis through the lens of Bronfenbrenners Adapted Ecological Systems Theory. Results1,464 homecare worker codes were identified in the 36 included documents, but only 72 times/17 documents in the context of end-of-life care. In the context of end-of-life care and homecare workers, education and training codes were present 3 and 35 times respectively. The need for end-of-life education and training was recognised, but in general, little detail about delivery and implementation was given (e.g., whose responsibility; funding; minimum standard and content). ConclusionsThe homecare worker role in end-of-life care is poorly recognised in national policy. Little guidance is provided regarding minimum training standards or delivery. Given an ageing population globally and expected increased demand for end-of-life homecare, national and international policy guidance should include this workforce. KEY MESSAGE BOXO_ST_ABSWhat was already known?C_ST_ABSO_LISocial homecare workers (variously known as personal assistants/aides or helps) play a significant role in providing end-of-life care for individuals in their own homes. C_LIO_LIThe demand for homecare is increasing due to an ageing population globally and access to good quality provision of end-of-life care is a priority to support community-based care. C_LI What are the new findings?O_LIThere is a policy gap regarding homecare workers in the context of end-of-life care, with little progress since 2010. C_LIO_LIFew policy documents recognise the role of homecare workers in providing end-of- C_LIO_LIlife homecare and there is little evidence that previous highly relevant policy recommendations (2010) have been incorporated in more recent current policy or enacted in practice. C_LIO_LIThe need for homecare workers education and training in the context of end-of-life care is recognised, but few details about minimum content and standards, or delivery are given. C_LI What is their significance?O_LIAlthough this is a UK-based study, given the ageing population internationally with likely increased need for care at the end-of-life, training, role definitions, and support to enable the homecare worker workforce to provide end-of-life care has relevance as a clinical and social care practice priority around the world. C_LIO_LIPolicy guidance around end-of-life care should i) include the social homecare workforce; stipulate minimum training requirements in relation to end-of-life care, and ii) integrate this support and training into routine job descriptions, and as part of the working day. C_LIO_LIImproved training and support is an important step to increase the quality of end-of-life care provision. C_LI

BackgroundInjectable anticipatory medications are routinely prescribed ahead of need in many countries to help manage distressing end-of-life symptoms. However, little is known about the lived experience of patients and informal caregivers as they navigate the prescription and use of anticipatory medications. AimTo understand patient journeys in navigating anticipatory medication care, and to identify interactions with the greatest potential for improvement. DesignQualitative secondary analysis of longitudinal interview data using framework analysis and patient journey mapping techniques. Setting/participantsEleven patient-centred cases receiving end-of-life care in the community. Six patients, nine informal caregivers and five healthcare professionals took part (28 interviews). ResultsPatient journeys with anticipatory medications differed from intended pathways. Participants appreciated having access to injectable medications for future symptom control. However, there was suboptimal information exchange between patients, informal caregivers and healthcare professionals regarding their purpose and threshold for use. Navigating unfamiliar and complex end-of-life medication support pathways was more successful where patients could self-advocate or had live-in informal caregiver advocates, compared to those who lived alone or experienced communication difficulties. ConclusionsPatient and informal caregiver experiences of timely symptom control could be improved by healthcare professionals having open and ongoing conversations about the role of anticipatory medications. Different patient contexts and fluctuating abilities point to a need for simplified and better signposted ways for accessing healthcare professional advice, and medication input. Journey mapping techniques offer a novel way to illustrate patient and informal caregivers lived experience and can be adapted for researching other pathways. Key StatementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LIAnticipatory prescribing is considered best practice in aiding the timely control of distressing end-of-life symptoms in the community. C_LIO_LIThe intended pathway for prescribing and using injectable anticipatory medications in the community is complex, consisting of many decision-making points and practical activities. C_LIO_LILittle is known about patients and families experiences of this care C_LI What this paper addsO_LIThe use of journey mapping techniques illustrates how patients and informal caregivers experiences of navigating anticipatory medications differ from the intended pathway. C_LIO_LIPatient personas highlight how individual patient characteristics and advocacy skills greatly influence journeys with anticipatory medications. C_LIO_LIPatients and informal carers find the systems for using anticipatory medications inherently complex and clear professional signposting is needed. C_LI Implications for practice, theory or policyO_LIpen and ongoing conversations about the purpose and use of anticipatory medications need to be tailored to individual patient and informal carer contexts. C_LIO_LIexperiential journey mapping techniques and personas is an innovative method for giving patients and their families a voice to help improve cross-organisational systems for delivering end-of-life care. 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.

BackgroundYoung persons with advanced life-limiting illness living at home have fluctuating and complex needs. Community paediatric palliative care (PPC) is still predominantly specialist-led. This poses a potential care vacuum as medical conditions stabilise and specialised care ceases. One home-based PPC service introduced a step-down care program (COMET) as bridge to continuous yet adaptable support. Above overall effectiveness, how different outcomes are achieved is also investigated for context. MethodsWe conducted a realist evaluation, using a mixed-methods case series design to study COMET operations and impact within the community care context (Context->Mechanism->Outcomes). Patient medical records and in-depth interviews with family caregivers and PPC professionals generated rich quantitative and qualitative data for analysis. ResultsOf 121 patients under specialist PPC homecare, 18 (14.9%) were enrolled in COMET since November 2020; 12 of these formed individual case studies. Interviews with 15 caregivers and 7 PPC clinicians produced three crucial findings: (i) Ongoing access to specialist care is required for ever evolving complexities; (ii) Continuing support at home is vital for regular management and intermittent emergencies; (iii) COMET harmonizes shifting levels of support within a single unified framework, safeguarding existing rapport and care consistency. ConclusionUntil generalist PPC expertise becomes prevalent outside the hospital setting, novel care models like COMET could plug gaps in community PPC services by offering flexible care options. Continuity of care, efficient resource management, and superior service quality are inherent benefits, if meaningful care tiering through substantive patient assessments are refined further in future iterations.

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.

AimThis research aims to evaluate the effectiveness, cultural appropriateness, and feasibility of the Cook Islands palliative care model te vaerua k[o]p[u] tangata ora within palliative care practice. BackgroundAccess to palliative and end of life care is a recognised human right, yet significant disparities persist for Pacific peoples in Aotearoa, New Zealand. While the understanding of different cultural perspectives has grown, in Aotearoa, there remain gaps in the delivery of culturally appropriate palliative care. MethodologyThis study will use a Cook Islands T[i]vaevae research methodology to guide semi-structured interviews with 25-35 Cook Islands community members and 10 palliative care clinicians. This approach will support a rich, relational, and culturally grounded exploration of how a Cook Islands M[a]ori palliative care model can be integrated into clinical practice. DiscussionRecommendations to improve culturally responsive palliative care will be formulated in collaboration with community members and clinicians. The study will contribute to the limited body of knowledge on Pacific cultural understandings of palliative care and provide practical insights into applying an indigenous Pacific model within the palliative care system.