Search

Background: Advance care planning (ACP) was encouraged by policymakers throughout the COVID-19 pandemic. Little is known about use of ACP during this time., Aim: To compare use of ACP before and during the COVID-19 pandemic., Design & Setting: Retrospective, observational cohort study comparing the creation, use, and content of Electronic Palliative Care Coordination System (EPaCCS) records in London. Individuals aged ≥18 years with a Coordinate My Care record, created and published in the pre-pandemic period (1 January 2018-31 December 2019), wave 1 (W1; 20 March 2020-4 July 2020), interwave (IW; 5 July 2020-30 September 2020), and wave 2 (W2; 1 October 2020-5 March 2021)., Method: Patient demographics and components of ACP were compared using descriptive and comparative statistics., Results: In total, 73 675 records were included; 35 108 pre-pandemic, 21 235 W1, 6323 IW, and 9925 W2 ( n = 1084 records not stratified as created and published in different periods). Most records were created in primary care (55.6% pre-pandemic, 75.5% W1, and 47.7% W2). Compared with the pre-pandemic period, the average weekly number of records created increased by 296.9% W1 ( P <0.005), 35.1% IW, and 29.1% W2 ( P <0.005). Patients with records created during the pandemic were younger (60.8% aged ≥80 years W1, 57.5% IW, 59.3% W2, 64.9% pre-pandemic [ P <0.005]). Patients with records created in W1 had longer estimated prognoses at record creation (73.3% had an estimated prognosis of ≥1 year W1 versus 53.3% pre-pandemic [ P <0.005]) and were more likely to be 'for resuscitation' (38.2% W1 versus 29.8% pre-pandemic [ P <0.005])., Conclusion: During the COVID-19 pandemic increased ACP activity was observed, especially in primary care, for younger people and those not imminently dying. Further research is needed to identify training and planning requirements as well as organisational and system changes to support sustained high-quality ACP within primary care., (Copyright © 2024, The Authors.)

Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Digital advance care planning systems are used internationally to document and share patients' wishes and preferences to inform care delivery. However, their use is impeded by a limited understanding of factors influencing implementation and evaluation., Aim: To develop mid-range programme theory to account for technological, infrastructure and human factor influences on digital advance care planning systems., Design: Exploratory qualitative research design incorporating Theory of Change workshops that explored contextual assumptions affecting digital advance care planning in practice. A mid-range programme theory was developed through thematic framework analysis using the Non-adoption, Abandonment, Scale-up, Spread and Sustainability (NASSS) framework, generating a conceptual model depicting contextual assumptions, interventions and outcomes influencing implementation., Participants: A total of 38 participants (16 from London, 14 from West Yorkshire and 8 online) including patients, carers and health and care professionals (including those with commissioning responsibilities)., Results: A conceptual model was generated depicting five distinct components relating to digital advance care planning system use: (sociocultural, technical and structural prerequisites; recognition of the clinical need for conversation; having conversations and documenting decisions; accessing, actioning and amending; and using data to support evaluation, use and implementation). There were differences and uncertainty relating to what digital advance care planning systems are, who they are for and how they should be evaluated., Conclusions: Digital advance care planning lacks shared beliefs and practices, despite these being essential for complex technology implementation. Our mid-range programme theory can guide their further development and application by considering technological, infrastructure and human factor influences to optimise their implementation., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: The number of people with palliative care needs is projected to increase globally. Chile has recently introduced legislation for universal access to palliative care services for patients with severe and terminal illnesses, including non-cancer conditions. We aimed to estimate the number of people affected by serious health-related suffering and need for palliative care in Chile to 2050., Methods: We used data on all deaths registered in Chile between 1997-2019 and population estimates for 1997-2050. We used Poisson regression to model past trends in causes of death adjusted by age, sex and population estimates, to project the number of deaths for each cause from 2021 to 2050. We applied the Lancet Commission on Palliative Care and Pain Relief weights to these projections to identify decedents and non-decedents with palliative care needs., Results: Population palliative care needs in Chile are projected to increase from 117 (95% CI 114 to 120) thousand people in 2021 to 209 (95% CI 198 to 223) thousand people in 2050, a 79% increase (IRR 1.79; 95% CI 1.78-1.80). This increase will be driven by non-cancer conditions, particularly dementia (IRR 2.9, 95% CI 2.85-2.95) and cardiovascular conditions (IRR 1.86, 95% CI 1.83-1.89). By 2050, 50% of those estimated to need palliative care will be non-decedents (not expected to die within a year)., Conclusions: Chile will experience a large increase in palliative care needs, particularly for people with dementia and other non-cancer conditions. Improved availability of high-quality services, expanded clinician training and new sustainable models of care are urgently required to ensure universal access to palliative care., (© 2024. The Author(s).)

Background: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare., Aim: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?', Design: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs)., Findings: A total of 27 participants attended online workshops (July and September 2022): patient and public members ( n  = 6), commissioners ( n  = 2), primary care ( n  = 5) and specialist palliative care professionals ( n  = 14). Most were White British ( n  = 22), other ethnicities were Asian ( n  = 3), Black African ( n  = 1) and British mixed race ( n  = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements., Conclusions: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research., Competing Interests: Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: SM is the National Clinical Director for Palliative and End of Life Care, NHS England. There are no financial conflicts of interest to declare. No other authors have any conflicts of interest.

Background: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care., Aim: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care., Design: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration., Setting/participants: UK care home senior care leaders, purposively sampled by registration type, size and geographical location., Results: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59-4.97, p = 0.33; large - aOR 0.65, 95% CI 0.18-2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance., Conclusion: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes., (© 2024. The Author(s).)

Background: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals., Objective: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England., Methods: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels., Results: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access., Conclusions: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally., (©Andy Bradshaw, Jacqueline Birtwistle, Catherine J Evans, Katherine E Sleeman, Suzanne Richards, Robbie Foy, Pablo Millares Martin, Paul Carder, Matthew J Allsop, Maureen Twiddy. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 16.08.2024.)

Objectives: The aim was to synthesize evidence on the use of person-centered outcome measures to facilitate integrated palliative care for older people and build a logic model depicting the mechanisms through which person-centered outcome measures support integrated care., Design: Mixed methods systematic review using a data-based convergent synthesis design., Setting and Participants: Older people aged ≥60 years who are approaching the end of their lives in multiple settings., Methods: The study was underpinned by a conceptual framework of integrated palliative care, which informed the search strategy, data extraction, analysis, and synthesis. A hybrid search strategy was implemented, with database searches (PsycINFO, MEDLINE, CINAHL, and ASSIA) complemented by snowball searches. Qualitative and quantitative data were analyzed by narrative synthesis to summarize and explain the findings. The findings informed a logic model depicting the mechanisms of using person-centered outcome measures to support integrated palliative care., Results: Twenty-six studies were included. Three mixed methods studies, 2 qualitative studies, and 21 quantitative studies were included. There was evidence that person-centered outcome measures could support integrated palliative care through informing palliative care policy development (n = 4), facilitating joint working across settings (n = 5), enabling close collaboration of multidisciplinary teams (n = 14), promoting joint education (n = 1), facilitating timing and specialist referral (n = 6), and enhancing patient-centered care (n = 3)., Conclusions and Implications: This review makes an important, novel, and theoretically informed contribution to the delivery of scalable and sustainable integrated palliative care into the care of older people using person-centered outcome measures. The constructed logic model provides a conceptual framework and practical approach to how person-centered outcome measures support multilevel integration. A future area of research is the development of person-centered outcome measure interventions informed by the logic model to meet clinical needs., Competing Interests: Disclosure L.C. is funded by a PGR International Studentship 2021/22 grant from King’s College London (21140830). K.E.S. is the Laing Galazka Chair in Palliative Care at King’s College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. Y.M. is funded by King’s College London and China Scholarship Council (K-CSC-202106370016). W.S. is funded by Scholarship in Commemoration of His Majesty King Bhumibol Adulyadej's 90th Birthday Anniversary for PhD program from Princess Agrarajakumari College of Nursing, Chulabhorn Royal Academy, Thailand. The remaining authors declare no conflicts of interest., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care., Aim: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development., Design: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews., Setting/participants: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents., Results: Four generated themes included: 1. ' Why haven't you read what's wrong with me? '; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having ' a say in matters ': control and responsibility; 4. Enabling patient and carer control of their records: ' custodianship is key '., Conclusions: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: People with palliative care needs and their carers often rely on out-of-hours services to remain at home. Policymakers have recommended implementing telephone advice lines to ensure 24/7 access to support. However, the impact of these services on patient and carer outcomes, as well as the health care system, remains poorly understood., Aim: To evaluate the clinical- and cost-effectiveness of out-of-hours palliative care telephone advice lines, and to identify service characteristics associated with effectiveness., Design: Rapid systematic review (PROSPERO ID: CRD42023400370) with narrative synthesis., Data Sources: Three databases (Medline, EMBASE and CINAHL) were searched in February 2023 for studies of any design reporting on telephone advice lines with at least partial out-of-hours availability. Study quality was assessed using the Mixed Methods Appraisal Tool, and quantitative and qualitative data were synthesised narratively., Results: Twenty-one studies, published 2000-2022, were included. Most studies were observational, none were experimental. While some evidence suggested that telephone advice lines offer guidance and reassurance, supporting care at home and potentially reducing avoidable emergency care use in the last months of life, variability in reporting and poor methodological quality across studies limit our understanding of patient/carer and health care system outcomes., Conclusion: Despite their increasing use, evidence for the clinical- and cost-effectiveness of palliative care telephone advice lines remains limited, primarily due to the lack of robust comparative studies. There is a need for more rigorous evaluations incorporating experimental or quasi-experimental methods and longer follow-up, and standardised reporting of telephone advice line models and outcomes, to guide policy and practice., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care., Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services., Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework., Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled., Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models 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 signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations., Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research., Methods: PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a "you said, we did" impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion., Results: In total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a "jargon buster", an animation and an online recipe book ( http://www.re-equipp.co.uk/ ) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research., Conclusion: Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research., (© 2024. The Author(s).)

Background: Admitting people with dementia to critical care units may not always lead to a clear survival benefit. Critical care admissions of people with dementia vary across countries. Little is known about the use and trends of critical care admissions of people with dementia in England., Objective: To investigate critical care use and survival among people with dementia in a large London catchment area., Methods: A retrospective cohort study using data from dementia assessment services in south London, UK (2007-20) linked with national hospitalisation data to ascertain critical care admissions. Outcomes included age-sex-standardised critical care use and 1-year post-critical care admission survival by dementia severity (binary: mild versus moderate/severe). We used logistic regression and Kaplan-Meier survival plots for investigating 1-year survival following a critical care admission and linear regressions for time trends., Results: Of 19,787 people diagnosed with dementia, 726 (3.7%) had ≥1 critical care admission at any time after receiving their dementia diagnosis. The overall 1-year survival of people with dementia, who had a CCA, was 47.5% (n = 345). Dementia severity was not associated with 1-year survival following a critical care admission (mild dementia versus moderate-severe dementia odds of 1-year mortality OR: 0.90, 95% CI [0.66-1.22]). Over the 12-year period from 2008 to 2019, overall critical care use decreased (β = -0.05; 95% CI = -0.01, -0.0003; P = 0.03), while critical care admissions occurring during the last year of life increased (β = 0.11, 95% CI = 0.01, 0.20, P = 0.03)., Conclusions: In this cohort, while critical care use among people with dementia declined overall, its use increased among those in their last year of life. Survival remains comparable to that observed in general older populations., (© The Author(s) 2023. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Increased advance care planning was endorsed at the start of the Coronavirus disease 2019 (COVID-19) pandemic with the aim of optimizing end-of-life care. This retrospective observational cohort study explores the impact of advanced care planning on place of death. 21,962 records from patients who died during the first year of the pandemic and who had an Electronic Palliative Care Coordination System record were included. 11,913 (54%) had a documented place of death. Of these 5,339 died at home and 2,378 died in hospital. 9,971 (45%) had both a documented place of death and a preferred place of death. Of these, 7,668 (77%) died in their preferred location. Documented elements of advance care planning, such as resuscitation status and ceiling of treatment decisions, were associated with an increased likelihood of dying in the preferred location, as were the number of times the record was viewed. During the COVID-19 pandemic, advanced care planning and the use of digital care coordination systems presented an opportunity for patients and healthcare staff to personalize care and influence end-of-life experiences., Competing Interests: The author(s) declared no potential conflicts of interest concerning the research, authorship, and/or publication of this article., (© The Author(s) 2023.)

Objectives: Emergency department (ED) attendance is common among people with dementia and associated with poor health outcomes. Literature suggests a link between access to community care and the ED, but we know little about the mechanisms behind this link. This study aimed to explore experiences of accessing community and emergency care among people affected by dementia., Methods: Informed by critical realism, semi-structured online and telephone interviews were conducted with people with dementia and family caregivers, with and without experience of using the ED. Participants were recruited from across the United Kingdom using purposive sampling with maximum variation. A mostly experiential reflexive thematic analysis approach was used, applying the candidacy model of access to deepen interpretation., Results: Two dyad and 33 individual interviews were conducted with 10 people with dementia, 11 current caregivers and 16 bereaved caregivers (men = 11, 70-89 years = 18, white ethnicity = 32). Three themes are reported: (1) Navigating a 'push system', (2) ED as the 'last resort', and (3) Taking dementia 'seriously'. Themes describe a discrepancy between the configuration of services and the needs of people affected by dementia, who resort to the ED in the absence of accessible alternatives. Underlying this discrepancy is a lack of systemic prioritisation of dementia and wider societal stigma., Conclusion: Although a last resort, ED attendance is frequently the path of least resistance for people with dementia who encounter multiple barriers for timely, responsive access to community health and social care. Greater systemic prioritisation of dementia as a life-limiting condition may help to reduce reliance on the ED through essential development of post-diagnostic care, from diagnosis to the end of life., (© 2023 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Background: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups., Aim: To examine the association between home death and socioeconomic position during the Covid-19 pandemic, and how this changed between 2019 and 2020., Design: Retrospective cohort study using population-based individual-level mortality data., Setting/participants: All registered deaths in England, Wales, Scotland and Northern Ireland. The proportion of home deaths between 28th March and 31st December 2020 was compared with the same period in 2019. We used Poisson regression models to evaluate the association between decedent's area-based level of deprivation and risk of home death, as well as the interaction between deprivation and year of death, for each nation separately., Results: Between the 28th March and 31st December 2020, 409,718 deaths were recorded in England, 46,372 in Scotland, 26,410 in Wales and 13,404 in Northern Ireland. All four nations showed an increase in the adjusted proportion of home deaths between 2019 and 2020, ranging from 21 to 28%. This increase was lowest for people living in the most deprived areas in all nations, with evidence of a deprivation gradient in England., Conclusions: The Covid-19 pandemic exacerbated a previously described socioeconomic inequality in place of death in the UK. Further research to understand the reasons for this change and if this inequality has been sustained is needed.

Background: Understanding how socioeconomic position influences the symptoms and concerns of patients approaching the end of life is important for planning more equitable care. Data on this relationship is lacking, particularly for patients with non-cancer conditions., Aim: To analyse the association between socioeconomic position and the symptoms and concerns of older adult patients seen by specialist palliative care., Design: Secondary analysis of cross-sectional, routinely collected electronic patient data. We used multivariable linear regression with robust standard errors, to predict scores on the three subscales of the Integrated Palliative care Outcome Scale (IPOS; physical symptoms, emotional symptoms and communication and practical concerns) based on patient level of deprivation, measured using Index of Multiple Deprivation., Setting/participants: Consecutive inpatients aged 60 years and over, seen by specialist palliative care at two large teaching hospitals in London between 1st January 2016 and 31st December 2019., Results: Seven thousand eight hundred and sixty patients were included, 38.3% had cancer. After adjusting for demographic and clinical characteristics, patients living in the most deprived areas had higher (worse) predicted mean scores on the communication and practical subscale than patients living in the least deprived areas, 5.38 (95% CI: 5.10, 5.65) compared to 4.82 (4.62, 5.02) respectively. This effect of deprivation diminished with increasing age. Deprivation was not associated with scores on the physical or emotional symptoms subscales., Conclusions: Targetting resources to address practical and communication concerns could be a strategy to reduce inequalities. Further research in different hospitals and across different settings using patient centred outcome measures is needed to examine inequalities.

Background: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach., Methods: We consulted experts and followed consensus-based standards for the selection of health status measurement instruments and United States Food and Drug Administration guidance for adaptation and analysis. Exploratory Factor Analysis and clinical perspective informed subscales. We tested the internal consistency reliability, calculated item total correlations, examined re-test reliability in stable patients, and also evaluated inter-rater reproducibility. We examined convergent and divergent validity of IPOS-COV with the Australia-modified Karnofsky Performance Scale and evaluated known-groups validity. Ability to detect change was examined., Results: In the adaptation phase, 6 new items were added, 7 items were removed from the original measure. The recall period was revised to be the last 12-24 h to capture fast deterioration in COVID. General format and response options of the original Integrated Palliative care Outcome Scale were preserved. Data from 572 patients with COVID from across England and Wales seen by palliative care services were included. Four subscales were supported by the 4-factor solution explaining 53.5% of total variance. Breathlessness-Agitation and Gastro-intestinal subscales demonstrated good reliability with high to moderate (a = 0.70 and a = 0.67) internal consistency, and item-total correlations (0.62-0.21). All except the Flu subscale discriminated well between patients with differing disease severity. Inter-rater reliability was fair with ICC of 0.40 (0.3-0.5, 95% CI, n = 324). Correlations between the subscales and AKPS as predicted were weak (r = 0.13-0.26) but significant (p < 0.01). Breathlessness-Agitation and Drowsiness-Delirium subscales demonstrated good divergent validity. Patients with low oxygen saturation had higher mean Breathlessness-Agitation scores (M = 5.3) than those with normal levels (M = 3.4), t = 6.4 (186), p < 0.001. Change in Drowsiness-Delirium subscale correctly classified patients who died., Conclusions: IPOS-COV is the first patient-centred measure adapted for severe COVID to support timely management. Future studies could further evaluate its responsiveness and clinical utility with clinimetric approaches., (© 2023. The Author(s).)

Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes., Materials and Methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity., Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key "pillars" being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued., Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally., Competing Interests: KS is funded by a National Institute for Health and Care Research (NIHR) Clinician Scientist Fellowship (CS-2015-15-005) and is the Laing Galazka Chair in Palliative Care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. CE is funded by a Health Education England/NIHR Senior Clinical Lectureship (ICA-SCL-2015-01-001). CG is an NIHR Senior Investigator. SB is part-funded by the NIHR Applied Research Collaboration East of England (ARC EoE). IH is an NIHR Emeritus Senior Investigator, is supported by the NIHR ARC South London (SL) at King's College Hospital National Health Service Foundation Trust, and leads the Palliative and End-of-Life Care theme of the NIHR ARC South London and co-leads the national theme in this with SB. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Bradshaw, Ostler, Goodman, Batkovskyte, Ellis-Smith, Tunnard, Bone, Barclay, Vernon, Higginson, Evans and Sleeman.)

Background: emergency department (ED) visits have inherent risks for people with dementia yet increase towards the end-of-life. Although some individual-level determinants of ED visits have been identified, little is known about service-level determinants., Objective: to examine individual- and service-level factors associated with ED visits by people with dementia in the last year of life., Methods: retrospective cohort study using hospital administrative and mortality data at the individual-level, linked to health and social care service data at the area-level across England. The primary outcome was number of ED visits in the last year of life. Subjects were decedents with dementia recorded on the death certificate, with at least one hospital contact in the last 3 years of life., Results: of 74,486 decedents (60.5% women; mean age 87.1 years (standard deviation: 7.1)), 82.6% had at least one ED visit in their last year of life. Factors associated with more ED visits included: South Asian ethnicity (incidence rate ratio (IRR) 1.07, 95% confidence interval (CI) 1.02-1.13), chronic respiratory disease as the underlying cause of death (IRR 1.17, 95% CI 1.14-1.20) and urban residence (IRR 1.06, 95% CI 1.04-1.08). Higher socioeconomic position (IRR 0.92, 95% CI 0.90-0.94) and areas with higher numbers of nursing home beds (IRR 0.85, 95% CI 0.78-0.93)-but not residential home beds-were associated with fewer ED visits at the end-of-life., Conclusions: the value of nursing home care in supporting people dying with dementia to stay in their preferred place of care must be recognised, and investment in nursing home bed capacity prioritised., (© The Author(s) 2023. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Background: Healthcare organisations have legal and ethical duties to reduce inequalities in access to healthcare services and related outcomes. However, lesbian, gay, bisexual and/or transgender (LGBT+) people continue to experience and anticipate discrimination in health and social care. Skilled communication is vital for quality person-centred care, but there is inconsistent provision of evidence-based clinician education on health needs and experiences of LGBT+ people to support this. This study aimed to identify key stakeholders' experiences, preferences and best practices for communication regarding sexual orientation, gender identity and gender history in order to reduce inequalities in healthcare., Methods: Semistructured qualitative interviews with LGBT+ patients with serious illness, significant others and clinicians, recruited via UK-wide LGBT+ groups, two hospitals and one hospice in England. We analysed the interview data using reflexive thematic analysis., Results: 74 stakeholders participated: 34 LGBT+ patients with serious illness, 13 significant others and 27 multiprofessional clinicians. Participants described key communication strategies to promote inclusive practice across three domains: (1) 'Creating positive first impressions and building rapport' were central to relationship building and enacted through routine use of inclusive language, avoiding potentially negative non-verbal signals and echoing terminology used by patients and caregivers; (2) 'Enhancing care by actively exploring and explaining the relevance of sexual orientation and gender identity', participants described the benefits of clinicians initiating these discussions, pursuing topics guided by the patient's response or expressed preferences for disclosure. Active involvement of significant others was encouraged to demonstrate recognition of the relationship; these individual level actions are underpinned by a foundation of (3) 'visible and consistent LGBT+ inclusiveness in care systems'. Although participants expressed hesitance talking about LGBT+ identities with individuals from some sociocultural and religious backgrounds, there was widespread support for institutions to adopt a standardised, LGBT+ inclusive, visibly supportive approach., Conclusions: Person-centred care can be enhanced by incorporating discussions about sexual orientation and gender identity into routine clinical practice. Inclusive language and sensitive exploration of relationships and identities are core activities. Institutions need to support clinicians through provision of adequate training, resources, inclusive monitoring systems, policies and structures. Ten inclusive communication recommendations are made based on the data., Competing Interests: Competing interests: KB, SM, KJ and RH have received funding from the NIHR for other research work, and DB, KB, PC, RH and LT are members of the EAPC task force on improving palliative and end-of-life care for LGBT+ people., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.)

Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this., Methods: Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care., Results: 23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete., Conclusions: Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact., Competing Interests: Competing interests No competing interests were disclosed.

Objectives: Official data reports from countries where assisted suicide and euthanasia is legal are an important resource for discerning participation rates, patient safety and transparency in the way that assisted dying is legal. We aimed to identify what information is published in official data reports on assisted suicide and euthanasia across jurisdictions., Methods: We searched for official data reports from every jurisdiction where assisted suicide or euthanasia is legal. Searches were conducted on these countries' official health authority websites as well as on mainstream search engines. The data measures included within each report were described in four categories: participation data, patient characteristics, clinician characteristics, and drugs and dying process., Results: We found that 16 jurisdictions where assisted suicide or euthanasia is currently legal regularly publish data reports regarding its practice. The information included within these official reports varies greatly, with few measures published across all or most jurisdictions., Conclusions: Differences in the kinds of information published within official reports on assisted suicide and euthanasia makes comparing the practice of assisted suicide and euthanasia across jurisdictions challenging. Many jurisdictions fail to report data measures, which could be valuable to the understanding of assisted suicide and euthanasia practices within that country. Improving data reporting across jurisdictions where assisted suicide and euthanasia is legal, for example, through establishing minimum requirements for data collection and reporting, is an important step towards ensuring patient safety and the transparent practice of assisted suicide and euthanasia., Competing Interests: Competing interests: IF is on the board of Living and Dying Well, a think tank that researches and analyses evidence surrounding the ‘assisted dying’ debate. AW declares paid employment with Living and Dying Well for whom she works as a temporary researcher., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: The diagnosis of a severe physical health condition can cause psychological distress and lead to severe depression. The association between severe physical health conditions and the risk of suicide, and how the risk of suicide changes in the months following diagnosis, are not clear., Methods: We estimated whether a diagnosis of severe physical health conditions is associated with an increase in the risk of death by suicide using a dataset based on the 2011 Census linked to hospital records and death registration records covering 47,354,696 people alive on 1 January 2017 in England. Patients diagnosed with a low-survival cancer, chronic ischaemic heart disease, chronic obstructive pulmonary disease, or degenerative neurological condition were matched to individuals using socio-demographic characteristics from the Census. Using the Aalen-Johansen estimator, we estimated the cumulative incidence of death by suicide occurring between 1 January 2017 and 31 December 2021 (registered by 31 December 2021) in patients and matched controls, adjusted for other potential confounders using inverse probability weighting., Findings: Diagnosis of severe conditions was associated with an increased risk of dying by suicide. One year after diagnosis, the rate of suicide was 21.6 (95% confidence intervals: 14.9-28.4, number of events (N): 39) per 100,000 low-survival cancer patients compared to 9.5 (5.6-14.6, N:16) per 100,000 matched controls. For COPD patients, the one-year suicide rate was 22.4 (19.4-25.5, N:208) per 100,000 COPD patients (matched controls: 10.6, 8.3-13.0, N:85), for ischaemic heart disease 16.1 (14.1-18.2, N:225) per 100,000 patients (matched controls: 8.8, 7.1-10.4, N:128), for degenerative neurological conditions 114.5 (49.6-194.7, N:11) per 100,000 patients. The increase in risk was more pronounced in the first six months after diagnosis or first treatment., Interpretation: A diagnosis of severe physical illness is associated with higher suicide risk. The interaction of physical and mental illness emphasises the importance of collaborative physical and mental health care in these patients., Funding: The Office for National Statistics. KES is the Laing Galazka chair in palliative care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation., Competing Interests: None., (Crown Copyright © 2022 Published by Elsevier Ltd.)

Objectives: To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines., Methods: We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical variables were expressed as counts and percentages. Content analysis explored free text responses about symptom management in COVID-19. Medicines were classified using British National Formulary categories. Perceptions on effectiveness of medicines were grouped into five categories; effective, some, limited or unclear effectiveness, no effect., Results: 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. 358 services had managed patients with confirmed or suspected COVID-19. 289 services had protocols for symptom management in COVID-19. Services tended to prescribe medicines for symptom control comparable to medicines used in people without COVID-19; mainly opioids and benzodiazepines for breathlessness, benzodiazepines and antipsychotics for agitation, opioids and cough linctus for cough, paracetamol and non-steroidal anti-inflammatory drugs for fever, and opioids and paracetamol for pain. Medicines were considered to be mostly effective but varied by patient's condition, route of administration and dose., Conclusions: Services were largely consistent in prescribing for symptom management in people dying with COVID-19. Medicines used prior to COVID-19 were mostly considered effective in controlling common symptoms., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: To explore formal and informal care costs in the last 3 months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs., Design: Cross-sectional study using pooled data from 3 mortality follow-back surveys., Setting and Participants: People who died with dementia., Methods: The Client Service Receipt Inventory survey was used to derive formal (health, social) and informal care costs in the last 3 months of life. Generalized linear models were used to explore the association between transitions to hospital and usual place of care with formal and informal care costs., Results: A total of 146 people who died with dementia were included. The mean age was 88.1 years (SD 6.0), and 98 (67.1%) were female. The usual place of care was care home for 85 (58.2%). Sixty-five individuals (44.5%) died in a care home, and 85 (58.2%) experienced a transition to hospital in the last 3 months. The mean total costs of care in the last 3 months of life were £31,224.7 (SD 23,536.6). People with a transition to hospital had higher total costs (£33,239.2, 95% CI 28,301.8-39,037.8) than people without transition (£21,522.0, 95% CI 17,784.0-26,045.8), mainly explained by hospital costs. People whose usual place of care was care homes had lower total costs (£23,801.3, 95% CI 20,172.0-28,083.6) compared to home (£34,331.4, 95% CI 27,824.7-42,359.5), mainly explained by lower informal care costs., Conclusions and Implications: Total care costs are high among people dying with dementia, and informal care costs represent an important component of end-of-life care costs. Transitions to hospital have a large impact on total costs; preventing these transitions might reduce costs from the health care perspective, but not from patients' and families' perspectives. Access to care homes could help reduce transitions to hospital as well as reduce formal and informal care costs., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the coronavirus disease 2019 (COVID-19) pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic., Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach., Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19 across a number of roles (from 458): direct patient facing support (58.7%), indirect support (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (odds ratio [OR]=0.15, 95% CI=0.07-0.3, P <.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers, with policy changes preventing volunteer support. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support., Conclusion: Volunteers were mostly prevented from supporting many forms of palliative care which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19., (© 2022 The Author(s); Published by Kerman University of Medical Sciences This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.)

Objectives: In England, Electronic Palliative Care Coordination Systems (EPaCCS) were introduced in 2008 to support care coordination and delivery in accordance with patient preferences. Despite policy supporting their implementation, there has been a lack of rigorous evaluation of EPaCCS and it is not clear how they have been translated into practice. This study sought to examine the current national implementation of EPaCCS, including their intended impact on patient and service outcomes, and barriers and facilitators for implementation., Methods: We conducted a national cross-sectional online survey of end-of-life care commissioning leads for Clinical Commissioning Groups (CCGs) in England. We enquired about the current implementation status of EPaCCS, their role in information sharing and intended impact, and requested routine patient-level data relating to EPaCCS., Results: Out of 135 CCGs, 85 (63.0%) responded, with 57 (67.1%) having operational EPaCCS. Use of EPaCCS were confined to healthcare providers with most systems (67%) not supporting information sharing with care homes and social care providers. Most systems (68%) sought to facilitate goal concordant care, although there was inconsonance between intended impacts and monitoring measures used. Common challenges to implementation included healthcare professionals' limited engagement. Only one-third of patients had an EPaCCS record at death with limited recording of patient preferences., Conclusions: Critical gaps exist in engagement with EPaCCS and their ability to facilitate information sharing across care providers. The limited alignment between stated goals of EPaCCS and their monitoring impedes efforts to understand which characteristics of systems can best support care delivery., Competing Interests: The authors have declared that no competing interests exist.

Background: Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study is to understand the challenges faced by charitably funded hospices during the COVID-19 pandemic., Methods: Eligible Organisations providing specialist palliative or hospice care completed the online CovPall survey (2020) which explored their response to the COVID-19 pandemic. Eligible organisations were then purposively selected to participate in interviews as part of qualitative case studies (2020-21) to understand challenges in more depth. Free-text responses from the survey were analysed using content analysis and were categorised accordingly. These categorisations were used a priori for a reflexive thematic analysis of interview data., Results: 143 UK independent charitably funded hospices completed the online CovPall survey. Five hospices subsequently participated in qualitative case studies (n = 24 staff interviews). Key themes include: vulnerabilities of funding; infection control during patient care; and bereavement support provision. Interviewees discussed the fragility of income due to fundraising events stopping; the difficulties of providing care to COVID-19 and non-COVID-19 patients within relatively small organisations; and challenges with maintaining the quality of bereavement services., Conclusion: Some unique care and provision challenges during the COVID-19 pandemic were highlighted by charitably funded hospices. Funding core services charitably and independently may affect their ability to respond to pandemics, or scenarios where resources are unexpectedly insufficient., (© 2022. The Author(s).)

Context: Evidence of symptom control outcomes in severe COVID is scant., Objectives: To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival., Methods: Multicentre cohort study of people with COVID across England and Wales supported by palliative care services, during the pandemic in 2020 and 2021. We analysed clinical, demographic and survival data, symptom severity at baseline (referral to palliative care, first COVID assessment) and at three follow-up assessments using the Integrated Palliative care Outcome Scale - COVID version., Results: We included 572 patients from 25 services, mostly hospital support teams; 496 (87%) were newly referred to palliative care with COVID, 75 (13%) were already supported by palliative care when they contracted COVID. At baseline, patients had a mean of 2.4 co-morbidities, mean age 77 years, a mean of five symptoms, and were often bedfast or semiconscious. The most prevalent symptoms were: breathlessness, weakness/lack of energy, drowsiness, anxiety, agitation, confusion/delirium, and pain. Median time in palliative care was 46 hours; 77% of patients died. During palliative care, breathlessness, agitation, anxiety, delirium, cough, fever, pain, sore/dry mouth and nausea improved; drowsiness became worse. Common treatments were low dose morphine and midazolam. Having moderate to severe breathlessness, agitation and multimorbidity were associated with shorter survival., Conclusion: Symptoms of COVID quickly improved during palliative care. Breathlessness, agitation and multimorbidity could be used as triggers for timelier referral, and symptom guidance for wider specialities should build on treatments identified in this study., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Objective: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic., Design: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis., Setting: Organisations providing specialist palliative services in any setting., Participants: Staff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience., Main Outcome Measures: Experiences of working in palliative care during the COVID-19 pandemic., Results: Five cases and 24 participants were recruited (n = 12 nurses, 4 clinical managers, 4 doctors, 2 senior managers, 1 healthcare assistant, 1 allied healthcare professional). Central themes demonstrate how infection control constraints prohibited and diluted participants' ability to provide care that reflected their core values, resulting in experiences of moral distress. Despite organisational, team and individual support strategies, continually managing these constraints led to a 'crescendo effect' in which the impacts of moral distress accumulated over time, sometimes leading to burnout. Solidarity with colleagues and making a valued contribution provided 'moral comfort' for some., Conclusions: This study provides a unique insight into why and how healthcare staff have experienced moral distress during the pandemic, and how organisations have responded. Despite their experience of dealing with death and dying, the mental health and well-being of palliative care staff was affected by the pandemic. Organisational, structural and policy changes are urgently required to mitigate and manage these impacts.

Background: hospitalisations are sentinel events for people with dementia. How patterns of unplanned hospital admissions change among people with dementia after diagnosis is relatively unknown., Objective: to describe patterns of unplanned hospital admissions of people with dementia from diagnosis until death/study end., Methods: retrospective cohort study using mental healthcare provider data of people diagnosed with dementia in London, UK (1995-2017), linked to mortality and hospital data. The primary outcome was the rate of unplanned hospital admissions after diagnosis until death/study end. We calculated the cumulative incidence of unplanned hospital admissions. The rates of unplanned hospital admissions and the percentage of time spent as an inpatient were stratified by time from first dementia diagnosis., Results: for 19,221 people with dementia (61.4% female, mean age at diagnosis 81.0 years (standard deviation, SD 8.5)), the cumulative incidence of unplanned hospital admissions (n = 14,759) was 76.8% (95% CI 76.3%-77.3%). Individuals remained in the study for mean 3.0 (SD 2.6) years, and 12,667 (65.9%) died. Rates and lengths of unplanned hospital admissions remained relatively low and short in the months after the dementia diagnosis, increasing only as people approached the end of life. Percentage of time spent as an inpatient was <3% for people who were alive at the study end but was on average 19.6 and 13.3% for the decedents in the last 6 and 12 months of life, respectively., Conclusions: the steep rise in hospitalisations before death highlights the need for improved community care and services for people with dementia who are approaching the end of life., (© The Author(s) 2022. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background: Reducing hospital admissions among people dying with dementia is a policy priority., Aim: To explore associations between primary care contacts, continuity of primary care, identification of palliative care needs, and unplanned hospital admissions among people dying with dementia., Design and Setting: This was a retrospective cohort study using the Clinical Practice Research Datalink linked with hospital records and Office for National Statistics data. Adults (>18 years) who died between 2009 and 2018 with a diagnosis of dementia were included in the study., Method: The association between GP contacts, Herfindahl-Hirschman Index continuity of care score, palliative care needs identification before the last 90 days of life, and multiple unplanned hospital admissions in the last 90 days was evaluated using random-effects Poisson regression., Results: In total, 33 714 decedents with dementia were identified: 64.1% ( n = 21 623) female, mean age 86.6 years (SD 8.1), mean comorbidities 2.2 (SD 1.6). Of these, 1894 (5.6%) had multiple hospital admissions in the last 90 days of life (increase from 4.9%, 95% confidence interval [CI] = 4.2 to 5.6 in 2009 to 7.1%, 95% CI = 5.7 to 8.4 in 2018). Participants with more GP contacts had higher risk of multiple hospital admissions (incidence risk ratio [IRR] 1.08, 95% CI = 1.05 to 1.11). Higher continuity of care scores (IRR 0.79, 95% CI = 0.68 to 0.92) and identification of palliative care needs (IRR 0.66, 95% CI = 0.56 to 0.78) were associated with lower frequency of these admissions., Conclusion: Multiple hospital admissions among people dying with dementia are increasing. Higher continuity of care and identification of palliative care needs are associated with a lower risk of multiple hospital admissions in this population, and might help prevent these admissions at the end of life., (© The Authors.)

Objectives: To identify factors associated with palliative care services being busier during Covid-19. Methods: Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's College London Research Ethics committee (LRS-19/20-18541). The primary outcome was change in busyness (five-point ordinal scale). Ordinal logistic regression investigated factors associated with the primary outcome. Results: Of 277 responses, 71 (26%) reported being a lot more busy, 62 (22%) slightly more, 53 (19%) about the same, 50 (18%) slightly less, and 28 (10%) much less busy. Increased business was associated with homecare services (odds ratio [OR] 1.93, 95% confidence interval [CI] 1.15-3.25), nursing care at home (OR 3.24, 95% CI 1.70-6.19), publicly managed services (OR 2.20, 95% CI 1.11-4.34), Covid-19 cases (OR 1.01, 95% CI 1.00-1.01), and staff shortages (OR 2.71, 95% CI 1.64-4.48). Conclusion: Services providing community care, and publicly managed services, may have been better able to respond to escalating needs during Covid-19. This has potential implications for both service delivery and funding models.

Competing Interests: Declaration of interests LS is an honorary consultant at the WHO Collaborating Centre for Community Participation in Palliative Care and Long Term Care. RS is the chair of Patients Know Best, a for-profit company that gives patients and citizens access to and control of their health and social care records. The system can be used to include advanced care plans and advance directives. He is unpaid but has equity in the company. He is also the unpaid chair of the Point of Care Foundation, which works to humanise health and social care, including at the end of life, and of the UK Health Alliance on Climate Change, which brings together many royal colleges, the British Medical Association, The Lancet, and BMJ to mitigate the effects of climate change and emphasise the risks and potential benefits to health. He holds shares in the UnitedHealth Group, a health and wellbeing company operating in the USA, UK, and other countries, that offers end-of-life services. SHA received an honorarium in 2018 by Mundipharma for leading a publication on cancer pain in low-income and middle-income countries. MH is employed as Head of Information Support at Hospice UK. Hospice UK is the national charity for hospice and end-of-life care. It works to ensure all adults and children living with a terminal or life-shortening illness receive the care and support they need, when they need it. CK, like most people, has personal experience of deaths and prolongation of life that influence the way she thinks as a scholar about these issues. She has written about these publicly, in particular the unwanted prolongation of her sister Polly's life contrary to her best interests, and her mother's death, which was greatly supported by an advance decision to refuse treatment and a lasting power of attorney for health and welfare. CK is also on a number of committees, working parties, and charities related to death and dying, including the core group of the British Medical Association group revising the guidance on clinically assisted nutrition and hydration, and the Guideline Development Group on Prolonged Disorders of Consciousness of the Royal College of Physicians. FMK reports consulting fees unrelated to this paper from Merck KGaA/EMD Serono for work on gender equity in leadership, non-financial support from Grunenthal Foundation, and grants from Roche, Vitas Healthcare, Chinoin, Grunenthal, and Novartis, outside the submitted work. JN is the Chair of University College Hospitals NHS Foundation Trust and Whittington Health NHS Trust. MRR is the unpaid chair of Pallium India, a charitable trust in India that works towards integration of palliative care with health care, and the unpaid director of Trivandrum Institute of Palliative Sciences, a WHO Collaborating Centre for Training and Policy on Access to Pain Relief. ES reports personal fees from the Social Science Research Council during the conduct of the study; and personal fees from Saitama Prefectural University (Japan), Kyoto University (Japan), and the University of Tokyo (Japan), outside the submitted work. KES is funded by a National Institute for Health Research Clinician Scientist Fellowship (CS-2015-15-005) and is the Laing Galazka Chair in Palliative Care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. The views expressed are those of the authors and not necessarily those of the NHS, the National Institute for Health Research, or the Department of Health and Social Care. All other authors declare no competing interests.

Objective: To examine the association between primary and community care use and measures of acute hospital use in people with cancer at the end of life., Design: Retrospective cohort study., Setting: We used Discover, a linked administrative and clinical data set from general practices, community and hospital records in North West London (UK)., Participants: People registered in general practices, with a diagnosis of cancer who died between 2016 and 2019., Primary and Secondary Outcome Measures: ≥3 hospital admissions during the last 90 days, ≥1 admissions in the last 30 days and ≥1 emergency department (ED) visit in the last 2 weeks of life., Results: Of 3581 people, 490 (13.7%) had ≥3 admissions in last 90 days, 1640 (45.8%) had ≥1 admission in the last 30 days, 1042 (28.6%) had ≥1 ED visits in the last 2 weeks; 1069 (29.9%) had more than one of these indicators. Contacts with community nurses in the last 3 months (≥13 vs <4) were associated with fewer admissions in the last 30 days (risk ratio (RR) 0.88, 95% CI 0.90 to 0.98) and ED visits in the last 2 weeks of life (RR 0.79, 95% CI 0.68 to 0.92). Contacts with general practitioners in the last 3 months (≥11 vs <4) was associated with higher risk of ≥3 admissions in the last 90 days (RR 1.63, 95% CI 1.33 to 1.99) and ED visits in the last 2 weeks of life (RR 1.27, 95% CI 1.10 to 1.47)., Conclusions: Expanding community nursing could reduce acute hospital use at the end of life and improve quality of care., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)

Background: Palliative 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., Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision., Design: Cross-sectional national online survey., Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020., Findings: 61 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., Conclusion: This 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.

Background: Robust quality indicators (QIs) are essential for monitoring and improving the quality of care and learning from good practice. We aimed to identify and assess QIs for the care of older people and people with dementia who are nearing the end of life and recommend QIs for use with routinely collected electronic data across care settings., Methods: A systematic review was conducted, including five databases and reference chaining. Studies describing the development of QIs for care of older people and those with dementia nearing the end of life were included. QIs were categorized as relating to processes or outcomes, and mapped against six care domains. The psychometric properties (acceptability, evidence base, definition, feasibility, reliability, and validity) of each QI were assessed; QIs were categorized as robust, moderate, or poor., Results: From 12,980 titles and abstracts screened, 37 papers and 976 QIs were included. Process and outcome QIs accounted for 780 (79.7%) and 196 (20.3%) of all QIs, respectively. Many of the QIs concerned physical aspects of care (n = 492, 50.4%), and very few concerned spiritual and cultural aspects of care (n = 19, 1.9%). Three hundred and fifteen (32.3%) QIs were robust and of those 220 were measurable using routinely collected electronic data. The final shortlist of 71 QIs came from seven studies., Conclusions: Of the numerous QIs developed for care of older adults and those with dementia nearing the end of life, most had poor or moderate psychometric properties or were not designed for use with routinely collected electronic datasets. Infrastructure for data availability, combined with use of robust QIs, is important for enhancing understanding of care provided to this population, identifying unmet needs, and improving service provision., (© 2021 The Authors. Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

Background: Understanding patterns of mortality and place of death during the COVID-19 pandemic is important to help provide appropriate services and resources., Aims: To analyse patterns of mortality including place of death in the United Kingdom (UK) (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic to date., Design: Descriptive analysis of UK mortality data between March 2020 and March 2021. Weekly number of deaths was described by place of death, using the following definitions: (1) expected deaths: average expected deaths estimated using historical data (2015-19); (2) COVID-19 deaths: where COVID-19 is mentioned on the death certificate; (3) additional non-COVID-19 deaths: above expected but not attributed to COVID-19; (4) baseline deaths: up to and including expected deaths but excluding COVID-19 deaths., Results: During the analysis period, 798,643 deaths were registered in the UK, of which 147,282 were COVID-19 deaths and 17,672 were additional non-COVID-19 deaths. While numbers of people who died in care homes and hospitals increased above expected only during the pandemic waves, the numbers of people who died at home remained above expected both during and between the pandemic waves, with an overall increase of 41%., Conclusions: Where people died changed during the COVID-19 pandemic, with an increase in deaths at home during and between pandemic waves. This has implications for planning and organisation of palliative care and community services. The extent to which these changes will persist longer term remains unclear. Further research could investigate whether this is reflected in other countries with high COVID-19 mortality.

Background: Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions., Aim: To examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identification of needs and primary, community and hospital services in the last 90 days., Design: Retrospective cohort study using Discover, an administrative and clinical dataset from 365 primary care practices in London with deterministic individual-level data linkage to community and hospital records., Setting/participants: People diagnosed with dementia and registered with a general practitioner in North West London (UK) who died between 2016 and 2019. The primary outcome was multiple non-elective hospital admissions in the last 90 days of life. Secondary outcomes included contacts with primary and community care providers. We examined the association between identification of palliative care needs with outcomes., Results: Among 5804 decedents with dementia, 1953 (33.6%) were identified as having palliative care needs, including 1141 (19.7%) identified before the last 90 days of life. Identification of palliative care needs before the last 90 days was associated with a lower risk of multiple hospital admissions (Relative Risk 0.70, 95% CI 0.58-0.85) and more contacts with the primary care practice, community nurses and palliative care teams in the last 90 days., Conclusions: Further investigation of the mechanisms underlying the association between identification of palliative care needs and reduced hospital admissions could help reduce reliance on acute care for this population.

Objectives: Emergency department (ED) attendance is common among people with dementia and increases toward the end of life. The aim was to systematically review factors associated with ED attendance among people with dementia approaching the end of life., Design: Systematic search of 6 databases (MEDLINE, EMBASE, ASSIA, CINAHL, PsycINFO, and Web of Science) and gray literature. Quantitative studies of any design were eligible. Newcastle-Ottawa Scales and Cochrane risk-of-bias tools assessed study quality. Extracted data were reported narratively, using a theoretical model. Factors were synthesized based on strength of evidence using vote counting (PROSPERO registration: CRD42020193271)., Setting and Participants: Adults with dementia of any subtype and severity, in the last year of life, or in receipt of services indicative of nearness to end of life., Measurements: The primary outcome was ED attendance, defined as attending a medical facility that provides 24-hour access to emergency care, with full resuscitation resources., Results: After de-duplication, 18,204 titles and abstracts were screened, 367 were selected for full-text review and 23 studies were included. There was high-strength evidence that ethnic minority groups, increasing number of comorbidities, neuropsychiatric symptoms, previous hospital transfers, and rural living were positively associated with ED attendance, whereas higher socioeconomic position, being unmarried, and living in a care home were negatively associated with ED attendance. There was moderate-strength evidence that being a woman and receiving palliative care were negatively associated with ED attendance. There was only low-strength evidence for factors associated with repeat ED attendance., Conclusions and Implications: The review highlights characteristics that could help identify patients at risk of ED attendance near the end of life and potential service-related factors to reduce risks. Better understanding of the mechanisms by which residential facilities and palliative care are associated with reduced ED attendance is needed., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)