Palliative Medicine

BackgroundDespite growing recognition of the importance of identifying unmet needs in palliative care, there remains no clear, operational definition of what constitutes unmet palliative care needs. This gap hinders service planning, policy development and equitable access to care. We aimed to explore priorities for understanding and measuring unmet palliative care needs with stakeholders, including people with lived and professional experience. MethodsThree online workshops using a modified nominal group technique with people with lived experience of life-limiting illness and professionals in palliative care. Separate workshops were held for each group to independently identify elements that capture the concept of unmet palliative care needs, followed by a combined workshop to refine and consolidate findings. Workshop data were analysed using content analysis. Participants then completed an online ranking exercise to prioritise key elements, which was analysed descriptively. FindingsTwenty-eight individuals participated, including 11 people with lived experience and 17 with professional experience. In the final workshop, participants agreed on a list of 27 elements capturing unmet palliative care needs, which were conceptualised in two main ways: 1) service-related (e.g. lack of a single point of contact to access support, including out-of-hours), and those related to symptoms and concerns, (e.g. pain not assessed and managed). Twenty-three participants completed the ranking exercise. Highly prioritised elements included lack of timely and holistic assessment of symptoms or suffering, inability to access services needed, lack of coordination, and continuity of care. Other priorities for understanding and measuring unmet palliative care needs were lack of timely follow-up to address symptoms, lack of skilled support, and lack of respect, dignity and empathy. ConclusionsThis study is the first to engage both individuals with lived experience and professionals in conceptualising unmet palliative care needs. Stakeholders prioritised two broad aspects important for capturing unmet palliative care needs: symptom-related concerns and service-related issues. These findings provide a foundation for developing stakeholder-informed tools to assess unmet palliative care needs that are feasible for use across diverse care settings and populations.

BackgroundQuantifying palliative care needs and whether they are met is essential for effective service planning and provision. Estimates of palliative care needs are widely reported but less is known about unmet needs, with no accepted definition of this construct or guidance on how to measure it. AimTo investigate how unmet palliative care needs for adults with advanced life-limiting illness have been defined, measured, and reported in the evidence. DesignScoping review following the Joanna Briggs Institute guidelines. Data sourcesIn October 2024, we systematically searched MEDLINE, EMBASE, CINAHL, and PsycINFO for quantitative and mixed-methods studies published after 2000. Additional backward and forward citation and manual searching of grey literature sources were performed. Data on the definitions, measurement and reporting of unmet needs were extracted and charted and summarised narratively using inductive content analysis and framework synthesis. ResultsSeventy studies were included: nine reviews and 61 primary evidence studies from 16 countries. Only 11 (16%) studies explicitly defined unmet palliative care needs, usually as a discrepancy between required and received care. We identified three approaches to measurement: of unmet palliative care needs: 1) symptoms and concerns; 2) access to services; and 3) sufficiency of service provision to resolve symptoms and concerns. ConclusionsThis novel review highlights a lack of consensus regarding the definition, measurement and reporting of unmet palliative care needs. Three approaches identified in the review emphasise different aspects of unmet needs: their strengths and limitations are discussed and guidance on their use is provided for various end-users. What is already known about the topic?O_LIPrevalence of palliative care needs are widely reported in research and policy, but how unmet needs are defined and measured is less well understood. C_LI What this paper addsO_LIFew studies provide a clear, detailed definition of unmet palliative care needs. C_LIO_LIWe identify three main approaches to measuring unmet needs in palliative care research, by quantifying: 1) Symptoms and concerns; 2) Access to services; and 3) Sufficiency of service provision to resolve symptoms and concerns. C_LIO_LIThere is little focus on non-cancer populations and few reports of involvement of patients and carers in studies measuring unmet palliative care needs. C_LI Implications for practice, theory or policyO_LIMethodological strengths and limitations of the three identified approaches to measuring unmet palliative care needs are discussed. C_LIO_LITo address the knowledge gaps identified, recommendations for reporting of definitions and how these are operationalised are provided. C_LI

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 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.

BackgroundPalliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients symptom self-management, independence, and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. AimTo understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. DesignCross-sectional national online survey. Setting/participantsRehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings61 completed responses (England, n=55; Scotland, n=4; Wales, n=1; and Northern Ireland, n=1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. ConclusionThis study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care. Key StatementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LIGuidelines recommend that rehabilitation targeting function, well-being, and social participation is provided by specialist palliative care services. C_LIO_LIPrior to Covid-19, there was variable provision of palliative rehabilitation in the UK. This variation was related to local service priorities, funding, and commissioning constraints. C_LI What this paper addsO_LIOver time, Covid-19 related disruptions forced services to reconfigure and adapt which caused fluctuations in the shared spaces in which health professionals, patients and family care givers met to participate in rehabilitation. C_LIO_LIThese fluctuations resulted in the adoption of digital and remote forms of care which altered health professionals and patients capacity to participate in, and the equity of access to and reach of, rehabilitation. C_LIO_LICovid-19 has acted as a springboard for learning, with many rehabilitation services hoping to move into the future by (re)gaining losses and integrating these with lessons learned during the pandemic. C_LI Implications for practice, theory or policyO_LIRecommendations are made to support extended reach and more equitable access to rehabilitation in palliative care services. C_LIO_LIWe recommend mixed methods evaluations of hybrid models of in-person and online rehabilitation across palliative care settings. C_LI

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

BackgroundSexual health can be negatively affected by cancer. There is a paucity of literature exploring changes in sexual health during the end of life. AimTo assess changes in sexual health in patients with advanced cancer and their partners at the end of life, and to identify the associated factors. DesignA prospective longitudinal study of patients with advanced cancer and their partners on the quality of care and quality of life (QoL) (eQuiPe). Patients and partners completed 3-monthly questionnaires. Sexual health (desire, activity, satisfaction and enjoyment) was measured using the EORTC QLQ-SH22. Setting/participantsPatients aged [≥]18 years and diagnosed with advanced cancer were recruited in one of the forty participating Dutch hospitals. Relatives were recruited through patients, and for this study only couples (patient-partner) were included (n=352). ResultsTowards death, patients remained relatively stable in sexual activity (range 15-19), satisfaction (range 40-45), and enjoyment (range 30-44). Similar results were found for partners. In patients, sexual desire significantly decreased towards the end of life ({beta} 0.4, 95%CI 0.1-0.7). Moreover, greater decline in physical functioning was associated with poorer outcomes in most aspects of sexual health. Sexual desire, activity and satisfaction were individually associated with QoL in patients. ConclusionsSexual health remains relatively stable at the end of life in patients with advanced cancer and their partner. Patients with worse physical functioning report worse sexual health and sexual desire, activity and satisfaction are individually associated with better QoL. Therefore, addressing sexual health in palliative care is essential.

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 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

ObjectiveTo examine the provision of key components of palliative care (PC) in Dutch hospitals, and to identify associated hospital- and specialist palliative care team (SPCT) characteristics. Materials and methodsSPCTs from all 72 Dutch hospitals were invited to an online survey about PC practices in their hospital. The survey was conducted from January to March 2024. Data from a cross-sectional national survey among Dutch hospital-SPCTs was used. The survey included questions about hospital- and SPCT characteristics, and the current provision of key components of PC in hospitals, namely advance care planning (ACP) and routine symptom monitoring. Hospitals with and without implemented ACP and routine symptom monitoring were compared. ResultsIn total 58 hospitals participated (81%), with a median annual admission of 20,456 inpatients (IQR 12,787) and a median SPCT referral rate of 1.4% (IQR 1.4%) of annual admissions. Routine ACP discussions were held in 58% of hospitals, with 12% consistently implementing ACP across the hospital. No differences in hospital- and SPCT characteristics were found between hospitals with or without routine ACP discussions. In 59% of hospitals, symptoms of outpatients were screened using a tool. These hospitals had both a higher SPCT referral rate (1.7% vs. 1.1%, p<0.05) and more inpatient SPCT referrals compared to those without monitoring (median of 330 (IQR 199) vs. 175 (IQR 279), p<0.05). Moreover, hospitals with routine symptom monitoring were more likely to offer an internship with SPCTs (70% vs 35%) and PC education (61% vs 17%) compared to those without (p<0.05). ConclusionsRoutine ACP discussions and symptom monitoring in outpatients do not yet seem common practice in Dutch hospitals. SPCTs can play an important role to further implement these key elements, together with guidelines, educational programs and a digital infrastructure for reporting and sharing outcomes.

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.

BackgroundCOVID-19 has directly and indirectly caused high mortality worldwide. AimTo explore patterns of mortality during the COVID-19 pandemic and implications for palliative care provision, planning, and research. DesignDescriptive analysis and population-based modelling of routine data. Participants and settingAll deaths registered in England and Wales between 7th March and 15th May 2020. We described the following mortality categories by age, gender and place of death: 1) baseline deaths (deaths that would typically occur in a given period) 2) COVID-19 deaths 3) additional deaths not directly attributed to COVID-19. We estimated the proportion of COVID-19 deaths among people who would be in their last year of life in the absence of the pandemic, using simple modelling with explicit assumptions. ResultsDuring the first 10 weeks of the pandemic there were 101,615 baseline deaths, 41,105 COVID-19 deaths and 14,520 additional deaths. Deaths in care homes increased by 220% compared to home and hospital deaths which increased by 77% and 90%. Hospice deaths fell by 20%. Additional deaths were among older people (86% aged [&ge;]75 years), and most occurred in care homes (56%) and at home (43%). We estimate that 44% (38% to 50%) of COVID-19 deaths occurred among people who would have been in their last year of life in the absence of the pandemic. ConclusionsHealthcare systems must ensure availability of palliative care to support people with severe COVID-19 in community and hospital settings. Integrated models of palliative care in care homes are urgently needed. Key statementsO_ST_ABSWhat is already known about the topic?C_ST_ABSO_LIThe COVID-19 pandemic has directly and indirectly resulted in high mortality in many affected nations. C_LIO_LIInternationally the response has been focused on prevention and curative treatments, with little emphasis on palliative care needs of people dying during the COVID-19 pandemic. C_LIO_LIWe do not know how many of those dying with COVID-19 would have been in their last year of life in the absence of the pandemic, and this group may have distinct care needs. C_LI What this paper addsO_LIThe number of people dying in care homes trebled during the first 10 weeks of the COVID-19 pandemic in England and Wales; many of these deaths were additional deaths, that is associated with the COVID-19 pandemic but not directly as a result of COVID-19. C_LIO_LIWe estimate almost half of all COVID-19 deaths occurred among people who would have been in their last year of life in the absence of the pandemic. C_LI Implications for practice, theory or policyO_LIHealthcare systems must ensure availability of palliative care to support people with severe COVID-19 in community and hospital settings. C_LIO_LIThe need for integrated models of palliative care in care home settings is imperative and research to underpin these models is warranted. C_LI

BackgroundSocial homecare workers are crucial in the provision of end-of-life care but are not part of the healthcare multidisciplinary team. Little is known about why they are excluded within interprofessional working practices. AimTo explore experiences of delivering and receiving end-of-life homecare, from multiple perspectives including HCWs and managers, people receiving care, carers, and social and healthcare practitioners. DesignA qualitative multiple case study adopting a unique approach across three diverse sites using semi-structured interviews, and the option to create a Pictor chart - a visual diagram of relationships between those involved in care provision. Data were analysed using a reflexive thematic analysis. An adaptation of Bronfenbrenners ecological theory was used to inform the analysis. Setting/Participants133 participants, were recruited from three economically and culturally different geographic areas within England. ResultsAlthough examples of good practice were seen, common barriers to collaboration between other practitioners and homecare workers were also identified. These included: lack of healthcare practitioner training on homecare workers role and its value/importance, lack of direct communication systems, gatekeeping of communication by managers, asynchronous working practices, one-sided communication, and restricted access to respective documentation and systems. ConclusionThe homecare worker role was often poorly understood, undervalued, and with inadequate communication and interaction between practitioners, potentially impacting on quality of care. Collaborative practice is necessary for continuity of provision of high-quality care, but our findings indicate this was often absent due to knowledge, professional, and organisational barriers. Further research should explore suggested strategies to address the barriers identified. What is already known about this topic?O_LIHomecare workers provide a crucial service to people receiving care at end-of-life and wishing to remain in their own homes C_LIO_LICollaborative working between social and healthcare services improves care provision. C_LI What this paper addsO_LIBarriers to communication led to ineffective collaborative working, including lack of direct communication systems with gatekeeping by managers, asynchronous working practices, misperception of reactive one-sided communication, and restricted access to respective documentation. C_LIO_LIHealthcare practitioners often had poor knowledge of and undervalued the homecare worker role, exacerbating poor communication and collaboration. C_LIO_LIExamples of good practice and potential solutions to barriers to interprofessional working C_LI Implications for practice, theory or policyO_LIHealthcare practitioners require training to better understand, recognise and appreciate the role of homecare workers C_LIO_LICommunication barriers should be addressed to enable the homecare worker to contribute effectively to the multi-disciplinary team. C_LIO_LIThe homecare workforces role in providing high quality end-of-life care will remain constrained without wider professional and societal acknowledgement of its value. 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.

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

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

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

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.

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.

ContextEffective palliative care involves managing the many symptoms commonly experienced towards the end-of-life. Appropriate prescribing is key to this care, and ethnic inequalities may lead to unequal treatment and poorer outcomes for minority groups. Understanding these disparities is critical to ensuring equitable care. ObjectivesTo investigate ethnic inequalities in palliative care prescribing amongst adults residing in high-income countries. MethodsThe review was registered with the International Prospective Register of Systematic Reviews (PROSPERO) under registration number CRD42023476977. We conducted searches across three electronic databases (MEDLINE, Embase, and CINAHL) from January 2000 to November 2023. Screening, data extraction and quality assessment were conducted independently by two reviewers. Quality was assessed using various JBI Critical Appraisal tools. Due to the heterogeneity of included studies, a narrative review was undertaken without a meta-analysis. ResultsOut of 7880 references identified, 10 studies met the inclusion criteria, all conducted in the United States. Overall, five studies were deemed to be high quality and five were fair quality. The studies highlighted ethnic disparities in palliative care prescribing. Minority populations were less likely to receive pain management medications, particularly opioids, compared to non-Hispanic whites. Increased age, female gender, lower socioeconomic status, and place of residence were also related to differences in prescribing practices. ConclusionsThis rapid systematic review suggests that there are ethnic inequalities in palliative care symptom management prescribing, highlighting a possible gap in care for ethnic minority patients. Research beyond the USA is needed to understand if there are international disparities in palliative care prescribing. Key messageThis article reports a rapid systematic review on ethnic inequalities in palliative care prescribing for symptom control in high-income countries. Findings highlight a gap in care for ethnic minority patients. Further investigation is needed to understand how widespread disparities in palliative care prescribing are, across the world.