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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.)

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: 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.)

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.)

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: 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.

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.)

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).)

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.)

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.)

Introduction: Understanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs are and how they change closer to death, and (3) which factors are associated with these costs., Methods: We searched the electronic databases CINAHL, Medline, Cochrane, Web of Science, EconLit, and Embase and reference lists of included studies. We included any type of study published between 1999 and 2019, in any language, reporting primary data on costs of health care in individuals with dementia approaching the end of life. Two independent reviewers screened all full-text articles. We used the Evers' Consensus on Health Economic Criteria checklist to appraise the risk of bias of included studies., Results: We identified 2843 articles after removing duplicates; 19 studies fulfilled the inclusion criteria, 16 were from the United States. Only two studies measured informal costs including out-of-pocket expenses and informal caregiving. The monthly total direct cost of care rose toward death, from $1787 to $2999 USD in the last 12 months, to $4570 to $11921 USD in the last month of life. Female sex, Black ethnicity, higher educational background, more comorbidities, and greater cognitive impairment were associated with higher costs., Discussion: Costs of dementia care rise closer to death. Informal costs of care are high but infrequently included in analyses. Research exploring the costs of care for people with dementia by proximity to death, including informal care costs and from outside the United States, is urgently needed., Competing Interests: The authors declare that there are no conflicts of interest., (© 2021 The Authors. Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals, Inc. on behalf of Alzheimer's Association.)

Context: Systematic data on the care of people dying with COVID-19 are scarce., Objectives: To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors., Methods: We surveyed palliative care and hospice services, contacted via relevant organizations. Multivariable logistic regression identified associations with challenges. Content analysis explored free text responses., Results: A total of 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world; 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were: charity rather than public management (OR 3.07, 95% CI 1.81-5.20), inpatient palliative care unit rather than other settings (OR 2.34, 95% CI 1.46-3.75). Being outside the UK was associated with lower odds of staff shortages (OR 0.44, 95% CI 0.26-0.76). Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service., Conclusion: Palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics., Competing Interests: Conflict of Interest IJH is a National Institute for Health Research (NIHR) Emeritus Senior Investigator and is supported by the NIHR Applied Research Collaboration (ARC) South London (SL) at King's College Hospital National Health Service Foundation Trust. IJH leads the Palliative and End of Life Care theme of the NIHR ARC SL and co-leads the national theme in this. MM is funded by a NIHR Career Development Fellowship (CDF-2017-10-009) and NIHR ARC SL. LF is funded by a NIHR Career Development Fellowship (CDF-2018-11-ST2-002). KS is funded by a NIHR Clinician Scientist Fellowship (CS-2015-15-005). RC is funded by Cicely Saunders International. FEM is a NIHR Senior Investigator. MBH is supported by the NIHR ARC SL. The views expressed in this article are those of the authors and not necessarily those of the NIHR, or the Department of Health and Social Care., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Access to high-quality palliative care is inadequate for most people living and dying with serious illness. Policies aimed at optimising delivery of palliative and end of life care are an important mechanism to improve quality of care for the dying. The extent to which palliative care is included in national health policies is unknown. We aimed to identify priorities and opportunities for palliative and end of life care in national health policies in the UK., Methods: Documentary analysis consisting of 1) summative content analysis to describe the extent to which palliative and end of life care is referred to and/or prioritised in national health and social care policies, and 2) thematic analysis to explore health policy priorities that are opportunities to widen access to palliative and end of life care for people with serious illness. Relevant national policy documents were identified through web searches of key government and other organisations, and through expert consultation. Documents included were UK-wide or devolved (i.e. England, Scotland, Northern Ireland, Wales), health and social care government strategies published from 2010 onwards., Results: Fifteen policy documents were included in the final analysis. Twelve referred to palliative or end of life care, but details about what should improve, or mechanisms to achieve this, were sparse. Policy priorities that are opportunities to widen palliative and end of life care access comprised three inter-related themes: (1) integrated care - conceptualised as reorganisation of services as a way to enable improvement; (2) personalised care - conceptualised as allowing people to shape and manage their own care; and (3) support for unpaid carers - conceptualised as enabling unpaid carers to live a more independent lifestyle and balance caring with their own needs., Conclusions: Although information on palliative and end of life care in UK health and social care policies was sparse, improving palliative care may provide an evidence-based approach to achieve the stated policy priorities of integrated care, personalised care, and support for unpaid carers. Aligning existing evidence of the benefits of palliative care with the three priorities identified may be an effective mechanism to both strengthen policy and improve care for people who are dying., (© 2021. The Author(s).)

Background: Many patients prefer to avoid hospital-based care towards the end of life, yet hospitalisation is common and more likely for people with low socioeconomic position. The reasons underlying this socioeconomic inequality are not well understood. This study investigated health, service access, and social support as potential mediating pathways between socioeconomic position and receipt of hospital-based care towards the end of life., Methods: For this observational cohort study, we included deceased participants from the nationally representative English Longitudinal Study of Ageing of people aged 50 years or older in England. We used a multiple mediation model with age-adjusted and gender-adjusted probit regression to estimate the direct effect of socioeconomic position (measured by wealth and education) on death in hospital and three or more hospital admissions in the last 2 years of life, and the indirect effects of socioeconomic position via three mediators: health and function, access to health-care services, and social support., Findings: 737 participants were included (314 [42·6%] female, 423 [57·4%] male), with a median age at death of 78 years (IQR 71-85). For death in hospital, higher wealth had a direct negative effect (probit coefficient -0·16, 95% CI -0·25 to -0·06), which was not mediated by any of the pathways tested. For frequent hospital admissions, health and function mediated the effect of wealth (-0·04, -0·08 to -0·01), accounting for 34·6% of the total negative effect of higher wealth (-0·13, -0·23 to -0·02). Higher wealth was associated with better health and function (0·25, 0·18 to 0·33). Education was associated with the outcomes only indirectly via wealth., Interpretation: Our findings suggest that worse health and function could partly explain why people with lower wealth have more hospital admissions, highlighting the importance of socioeconomically driven health differences in explaining patterns of hospital use towards the end of life. The findings should raise awareness about the related risk factors of low wealth and worse health for patients approaching the end of life, and strengthen calls for resource allocation to be made on the basis of health need and socioeconomic profile., Funding: Dunhill Medical Trust Fellowship Grant (RTF74/0116)., (Copyright © 2021 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

Background: COVID-19 has been causing a high burden of suffering for patients and families. There is limited evidence on the preparedness of Indian palliative care services for the pandemic., Aim: This study aimed to assess the preparedness and capacity of Indian palliative care services in response to the COVID-19 pandemic., Methods: A cross-sectional online survey was developed based on prior evidence and international health regulations. It was emailed to the Indian Palliative Care Association members and investigators' professional networks in India. One participant per palliative care service was requested. Descriptive analysis was used., Results: Representatives of 78 palliative care services completed the survey. Three in four services had COVID-19 case definition and adapted their protocols for infection control (75%). About half of the services (55%) reported concerns about achieving appropriate hand hygiene in the community. More than half of the services (59%) had capacity to train nonspecialists for symptom control and psychological support. About half of the services reported that they had plans to redeploy staff (56%) and resources (53%) in the case of outbreaks. Two-fifths of the services used paper records to store an updated contact list of staff (40%) and did not have designated focal contacts for information update (40%). Staff anxiety related to personal infection risk and family care was relatively high (median score = 7 on a 1-10 scale)., Conclusion: We recommend the following resource allocation to enable palliative care services to support the Indian health system in delivering essential care in this and future pandemics: (1) infection control, especially in the community; (2) training using existing clinical protocols to strengthen palliative care across the health system; and (3) redeployment plans., Competing Interests: There are no conflicts of interest., (Copyright: © 2021 Indian Journal of Palliative Care.)

Context: Palliative care is an essential component of the coronavirus disease 2019 (COVID-19) pandemic response but is overlooked in national and international preparedness plans. The preparedness and capacity of African palliative care services to respond to COVID-19 is unknown., Objectives: To evaluate the preparedness and capacity of African palliative care services to respond to the COVID-19 pandemic., Methods: We developed, piloted, and conducted a cross-sectional online survey guided by the 2005 International Health Regulations. It was electronically mailed to the 166 African Palliative Care Association's members and partners. Descriptive analyses were conducted., Results: About 83 participants from 21 countries completed the survey. Most services had at least one procedure for the case management of COVID-19 or another infectious disease (63%). Respondents reported concerns over accessing running water, soap, and disinfectant products (43%, 42%, and 59%, respectively) and security concerns for themselves or their staff (52%). Two in five services (41%) did not have any or make available additional personal protective equipment. Most services (80%) reported having the capacity to use technology instead of face-to-face appointment, and half (52%) reported having palliative care protocols for symptom management and psychological support that could be shared with nonspecialist staff in other health care settings., Conclusion: Our survey suggests that African palliative care services could support the wider health system's response to the COVID-19 pandemic with greater resources such as basic infection control materials. It identified specific and systemic weaknesses impeding their preparedness to respond to outbreaks. The findings call for urgent measures to ensure staff and patient safety., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Cases of coronavirus disease 2019 (COVID-19) are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multimorbidity. This study aimed to synthesize evidence for the role and response of palliative care and hospice teams to viral epidemics/pandemics and inform the COVID-19 pandemic response. We conducted a rapid systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines in five databases. Of 3094 articles identified, 10 were included in this narrative synthesis. Included studies were from West Africa, Taiwan, Hong Kong, Singapore, the U.S., and Italy. All had an observational design. Findings were synthesized using a previously proposed framework according to systems (policies, training and protocols, communication and coordination, and data), staff (deployment, skill mix, and resilience), space (community provision and use of technology), and stuff (medicines and equipment as well as personal protective equipment). We conclude that hospice and palliative services have an essential role in the response to COVID-19 by responding rapidly and flexibly; ensuring protocols for symptom management are available, and training nonspecialists in their use; being involved in triage; considering shifting resources into the community; considering redeploying volunteers to provide psychosocial and bereavement care; facilitating camaraderie among staff and adopting measures to deal with stress; using technology to communicate with patients and carers; and adopting standardized data collection systems to inform operational changes and improve care., (Copyright © 2020. Published by Elsevier Inc.)

Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 inpatients with confirmed COVID-19 referred to hospital palliative care. Patients (64 men, median [interquartile range {IQR}] age 82 [72-89] years, Elixhauser Comorbidity Index 6 [2-10], Australian-modified Karnofsky Performance Status 20 [10-20]) were most frequently referred for end-of-life care or symptom control. Median [IQR] days from hospital admission to referral was 4 [1-12] days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23), and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median [range] dose/24 hours) were opioids (morphine, 10 [5-30] mg; fentanyl, 100 [100-200] mcg; alfentanil, 500 [150-1000] mcg) and midazolam (10 [5-20] mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median [IQR] of 2 [1-4] days under the palliative care team, who made 3 [2-5] contacts across patient, family, and clinicians. At March 30, 2020, 75 patients had died; 13 been discharged back to team, home, or hospice; and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum data set for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: transitions between care settings near the end-of-life for people with dementia can be distressing, lead to physical and cognitive deterioration, and may be avoidable., Objective: to investigate determinants of end-of-life hospital transitions, and association with healthcare use, among people with dementia., Design: retrospective cohort study., Setting: electronic records from a mental health provider in London, linked to national mortality and hospital data., Subjects: people with dementia who died in 2007-2016., Methods: end-of-life hospital transitions were defined as: multiple admissions in the last 90 days (early), or any admission in the last three days of life (late). Determinants were assessed using logistic regression., Results: of 8,880 people, 1,421 (16.0%) had at least one end-of-life transition: 505 (5.7%) had early, 788 (8.9%) late, and 128 (1.5%) both types. Early transitions were associated with male gender (OR 1.33, 95% CI 1.11-1.59), age (>90 vs <75 years OR 0.69, 95% CI 0.49-0.97), physical illness (OR 1.52, 95% CI 1.20-1.94), depressed mood (OR 1.49, 95% CI 1.17-1.90), and deprivation (most vs least affluent quintile OR 0.58, 95% CI 0.37-0.90). Care home residence was associated with fewer early (OR 0.63, 95% CI 0.53 to 0.76) and late (OR 0.80, 95% CI 0.65 to 0.97) transitions. Early transitions were associated with more hospital admissions throughout the last year of life compared to those with late and no transitions (mean 4.56, 1.89, 1.60; P < 0.001)., Conclusions: in contrast to late transitions, early transitions are associated with higher healthcare use and characteristics that are predictable, indicating potential for prevention., (© The Author(s) 2019. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background: Serious life-threatening and life-limiting illnesses place an enormous burden on society and health systems. Understanding how this burden will evolve in the future is essential to inform policies that alleviate suffering and prevent health system weakening. We aimed to project the global burden of serious health-related suffering requiring palliative care until 2060 by world regions, age groups, and health conditions., Methods: We projected the future burden of serious health-related suffering as defined by the Lancet Commission on Palliative Care and Pain Relief, by combining WHO mortality projections (2016-60) with estimates of physical and psychological symptom prevalence in 20 conditions most often associated with symptoms requiring palliative care. Projections were described in terms of absolute numbers and proportional change compared with the 2016 baseline data. Results were stratified by World Bank income regions and WHO geographical regions., Findings: By 2060, an estimated 48 million people (47% of all deaths globally) will die with serious health-related suffering, which represents an 87% increase from 26 million people in 2016. 83% of these deaths will occur in low-income and middle-income countries. Serious health-related suffering will increase in all regions, with the largest proportional rise in low-income countries (155% increase between 2016 and 2060). Globally, serious health-related suffering will increase most rapidly among people aged 70 years or older (183% increase between 2016 and 2060). In absolute terms, it will be driven by rises in cancer deaths (16 million people, 109% increase between 2016 and 2060). The condition with the highest proportional increase in serious-related suffering will be dementia (6 million people, 264% increase between 2016 and 2060)., Interpretation: The burden of serious health-related suffering will almost double by 2060, with the fastest increases occurring in low-income countries, among older people, and people with dementia. Immediate global action to integrate palliative care into health systems is an ethical and economic imperative., Funding: Research Challenge Fund, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London., (Copyright © 2019 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY-NC-ND 4.0 license. Published by Elsevier Ltd.. All rights reserved.)

Junior doctors describe a need for greater support and training in end of life care (EoLC) communication skills. The Second Conversation project was designed by a multi-professional steering group as a workplace based training intervention for junior doctors to improve their skills and confidence in undertaking EoLC conversations. Qualitative interviews were carried out with 11 junior doctors and five senior doctors across two sites who took part in, or facilitated, a 'second conversation'. This is a three-step training intervention that involves 1) observation - the junior doctor observes an EoLC conversation between a senior doctor and patient/caregiver; 2) direct experience - the junior doctor undertakes a follow-up second conversation with the patient/caregiver; and 3) reflection - the junior doctor discusses and reflects on the experience with a senior colleague. Interviews were analysed using framework analysis and findings informed iterative changes to the intervention and its implementation using 'Plan, Do, Study, Act' cycles. Benefits that were identified included the flexibility of the intervention and its positive impact on the confidence and skills of junior doctors. The Second Conversation was felt to be of most value to newly qualified doctors and worked well on wards where length of stay was longer and EoLC conversations frequently happen. Further evaluation and exploration of patient and caregiver experiences is required.

Background: dying in one's preferred place is a quality marker for end-of-life care. Little is known about preferred place of death, or the factors associated with achieving this, for people with dementia., Aims: to understand preferences for place of death among people with dementia; to identify factors associated with achieving these preferences., Population: adults with a diagnosis of dementia who died between December 2015 and March 2017 and who were registered on Coordinate My Care, an Electronic Palliative Care Coordination System., Design: retrospective cohort study., Analysis: multivariable logistic regression investigated factors associated with achieving preferred place of death., Results: we identified 1,047 people who died with dementia; information on preferred and actual place of death was available for 803. Preferred place of death was most commonly care home (58.8%, n = 472) or home (39.0%, n = 313). Overall 83.7% (n = 672) died in their preferred place. Dying in the preferred place was more likely for those most functionally impaired (OR 1.82 95% CI 1.06-3.13), and with a ceiling of treatment of 'symptomatic relief only' (OR 2.65, 95% CI 1.37-5.14). It was less likely for people with a primary diagnosis of cancer (OR 0.52, 95% CI 0.28-0.97), those who were 'for' cardio-pulmonary resuscitation (OR 0.32, 95% CI 0.16-0.62) and those whose record was created longer before death (51-250 days (ref <50 days) OR 0.60, 95% CI 0.38-0.94)., Conclusions: most people with dementia want to die in a care home or at home. Achieving this is more likely where goals of treatment are symptomatic relief only, indicating the importance of advance care planning., (© The Author(s) 2019. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background: Low socioeconomic position (SEP) is recognized as a risk factor for worse health outcomes. How socioeconomic factors influence end-of-life care, and the magnitude of their effect, is not understood. This review aimed to synthesise and quantify the associations between measures of SEP and use of healthcare in the last year of life., Methods and Findings: MEDLINE, EMBASE, PsycINFO, CINAHL, and ASSIA databases were searched without language restrictions from inception to 1 February 2019. We included empirical observational studies from high-income countries reporting an association between SEP (e.g., income, education, occupation, private medical insurance status, housing tenure, housing quality, or area-based deprivation) and place of death, plus use of acute care, specialist and nonspecialist end-of-life care, advance care planning, and quality of care in the last year of life. Methodological quality was evaluated using the Newcastle-Ottawa Quality Assessment Scale (NOS). The overall strength and direction of associations was summarised, and where sufficient comparable data were available, adjusted odds ratios (ORs) were pooled and dose-response meta-regression performed. A total of 209 studies were included (mean NOS quality score of 4.8); 112 high- to medium-quality observational studies were used in the meta-synthesis and meta-analysis (53.5% from North America, 31.0% from Europe, 8.5% from Australia, and 7.0% from Asia). Compared to people living in the least deprived neighbourhoods, people living in the most deprived neighbourhoods were more likely to die in hospital versus home (OR 1.30, 95% CI 1.23-1.38, p < 0.001), to receive acute hospital-based care in the last 3 months of life (OR 1.16, 95% CI 1.08-1.25, p < 0.001), and to not receive specialist palliative care (OR 1.13, 95% CI 1.07-1.19, p < 0.001). For every quintile increase in area deprivation, hospital versus home death was more likely (OR 1.07, 95% CI 1.05-1.08, p < 0.001), and not receiving specialist palliative care was more likely (OR 1.03, 95% CI 1.02-1.05, p < 0.001). Compared to the most educated (qualifications or years of education completed), the least educated people were more likely to not receive specialist palliative care (OR 1.26, 95% CI 1.07-1.49, p = 0.005). The observational nature of the studies included and the focus on high-income countries limit the conclusions of this review., Conclusions: In high-income countries, low SEP is a risk factor for hospital death as well as other indicators of potentially poor-quality end-of-life care, with evidence of a dose response indicating that inequality persists across the social stratum. These findings should stimulate widespread efforts to reduce socioeconomic inequality towards the end of life., Competing Interests: The authors have declared that no competing interests exist.

Background: Emergency department (ED) attendance for older people towards the end of life is common and increasing, despite most preferring home-based care. We aimed to review the factors associated with older people's ED attendance towards the end of life., Methods: Systematic review using Medline, Embase, PsychINFO, CINAHL and Web of Science from inception to March 2017. Included studies quantitatively examined factors associated with ED attendance for people aged ≥65 years within the last year of life. We assessed study quality using the QualSyst tool and determined evidence strength based on quality, quantity and consistency. We narratively synthesized the quantitative findings., Results: Of 3824 publications identified, 21 were included, combining data from 1 565 187 participants. 17/21 studies were from the USA and 19/21 used routinely collected data. We identified 47 factors and 21 were included in the final model. We found high strength evidence for associations between ED attendance and palliative/hospice care (adjusted effect estimate range: 0.1-0.94); non-white ethnicity (1.03-2.16); male gender (1.04-1.83, except 0.70 in one sub-sample) and rural areas (0.98-1.79). The final model included socio-demographic, illness and service factors, with largest effect sizes for service factors., Conclusions: In this synthesis, receiving palliative care was associated with lower ED attendance in the last year of life for older adults. This has implications for service models for older people nearing the end of life. However, there is limited evidence from European countries and none from low or middle-income countries, which warrants further research.

Background: understanding how best to provide palliative care for frail older people with non-malignant conditions is an international priority. We aimed to develop a community-based episodic model of short-term integrated palliative and supportive care (SIPS) based on the views of service users and other key stakeholders in the United Kingdom., Method: transparent expert consultations with health professionals, voluntary sector and carer representatives including a consensus survey; and focus groups with older people and carers were used to generate recommendations for the SIPS model. Discussions focused on three key components of the model: potential benefit of SIPS, timing of delivery and processes of integrated working between specialist palliative care and generalist practitioners. Content and descriptive analysis was employed and findings were integrated across the data sources., Findings: we conducted two expert consultations (n = 63), a consensus survey (n = 42) and three focus groups (n = 17). Potential benefits of SIPS included holistic assessment, opportunity for end of life discussion, symptom management and carer reassurance. Older people and carers advocated early access to SIPS, while other stakeholders proposed delivery based on complex symptom burden. A priority for integrated working was the assignment of a key worker to co-ordinate care, but the assignment criteria remain uncertain., Interpretation: key stakeholders agree that a model of SIPS for frail older people with non-malignant conditions has potential benefits within community settings, but differ in opinion on the optimal timing and indications for this service. Our findings highlight the importance of consulting all key stakeholders in model development prior to feasibility evaluation., (© The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background: mortality statistics are a frequently used source of information on deaths in dementia but are limited by concerns over accuracy., Objective: to investigate the frequency with which clinically diagnosed dementia is recorded on death certificates, including predictive factors., Methods: a retrospective cohort study assembled using a large mental healthcare database in South London, linked to Office for National Statistics mortality data. People with a clinical diagnosis of dementia, aged 65 or older, who died between 2006 and 2013 were included. The main outcome was death certificate recording of dementia., Results: in total, 7,115 people were identified. Dementia was recorded on 3,815 (53.6%) death certificates. Frequency of dementia recording increased from 39.9% (2006) to 63.0% (2013) (odds ratio (OR) per year increment 1.11, 95% CI 1.07-1.15). Recording of dementia was more likely if people were older (OR per year increment 1.02, 95% CI 1.01-1.03), and for those who died in care homes (OR 1.89, 95% CI 1.50-2.40) or hospitals (OR 1.14, 95% CI 1.03-1.46) compared with home, and less likely for people with less severe cognitive impairment (OR 0.95, 95% CI 0.94-0.96), and if the diagnosis was Lewy body (OR 0.30, 95% CI 0.15-0.62) or vascular dementia (OR 0.79, 95% CI 0.68-0.93) compared with Alzheimer's disease., Conclusions: changes in certification practices may have contributed to the rise in recorded prevalence of dementia from mortality data. However, mortality data still considerably underestimate the population burden of dementia. Potential biases affecting recording of dementia need to be taken into account when interpreting mortality data., (© The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society.)

Background: With increasingly intensive treatments and population ageing, more people face complex treatment and care decisions. We explored patterns of the decision-making processes during critical care, and sources of conflict and resolution., Methods: Ethnographic study in two Intensive Care Units (ICUs) in an inner city hospital comprising: non-participant observation of general care and decisions, followed by case studies where treatment limitation decisions, comfort care and/or end of life discussions were occurring. These involved: semi-structured interviews with consenting families, where possible, patients; direct observations of care; and review of medical records., Results: Initial non-participant observation included daytime, evenings, nights and weekends. The cases were 16 patients with varied diagnoses, aged 19-87 years; 19 family members were interviewed, aged 30-73 years. Cases were observed for <1 to 156 days (median 22), depending on length of ICU admission. Decisions were made serially over the whole trajectory, usually several days or weeks. We identified four trajectories with distinct patterns: curative care from admission; oscillating curative and comfort care; shift to comfort care; comfort care from admission. Some families considered decision-making a negative concept and preferred uncertainty. Conflict occurred most commonly in the trajectories with oscillating curative and comfort care. Conflict also occurred inside clinical teams. Families were most often involved in decision-making regarding care outcomes and seemed to find it easier when patients switched definitively from curative to comfort care. We found eight categories of decision-making; three related to the care outcomes (aim, place, response to needs) and five to the care processes (resuscitation, decision support, medications/fluids, monitoring/interventions, other specialty involvement)., Conclusions: Decision-making in critical illness involves a web of discussions regarding the potential outcomes and processes of care, across the whole disease trajectory. When measures oscillate between curative and comfort there is greatest conflict. This suggests a need to support early communication, especially around values and preferred care outcomes, from which other decisions follow, including DNAR. Offering further support, possibly with expert palliative care, communication, and discussion of 'trial of treatment' may be beneficial at this time, rather than waiting until the 'end of life'.

Objectives: To understand healthcare professionals' perceptions of the benefits and potential harms of integrated care pathways for end-of-life care, to inform the development of future interventions that aim to improve care of the dying., Design: Qualitative interview study with maximum variation sampling and thematic analysis., Participants: 25 healthcare professionals, including doctors, nurses and allied health professionals, interviewed in 2009., Setting: A 950-bed South London teaching hospital., Results: 4 main themes emerged, each including 2 subthemes. Participants were divided between (1) those who described mainly the benefits of integrated care pathways, and (2) those who talked about potential harms. Benefits focused on processes of care, for example, clearer, consistent and comprehensive actions. The recipients of these benefits were staff members themselves, particularly juniors. For others, this perceived clarity was interpreted as of potential harm to patients, where over-reliance on paperwork lead to prescriptive, less thoughtful care, and an absolution from decision-making. Independent of their effects on patient care, integrated care pathways for dying had (3) a symbolic value: they legitimised death as a potential outcome and were used as a signal that the focus of care had changed. However, (4) a weak infrastructure, including scanty education and training in end-of-life care and a poor evidence base, that appeared to undermine the foundations on which the Liverpool Care Pathway was built., Conclusions: The potential harms of integrated care pathways for the dying identified in this study were reminiscent of criticisms subsequently published by the Neuberger review. These data highlight: (1) the importance of collecting, reporting and using qualitative data when developing and evaluating complex interventions; (2) that comprehensive education and training in palliative care is critical for the success of any new intervention; (3) the need for future interventions to be grounded in patient-centred outcomes, not just processes of care., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Background: England has one of the highest rates of hospital death in dementia in Europe. How this has changed over time is unknown. This study aimed to analyse temporal trends in place of death in dementia over a recent ten year period., Methods: Population-based study linking Office for National Statistics mortality data with regional variables, in England 2001-2010. Participants were adults aged over 60 with a death certificate mention of dementia. Multivariable Poisson regression was used to determine the proportion ratio (PR) for death in care home (1) and home/hospice (1) compared to hospital (0). Explanatory variables included individual factors (age, gender, marital status, underlying cause of death), and regional variables derived at area level (deprivation, care home bed provision, urbanisation)., Results: 388,899 deaths were included. Most people died in care homes (55.3%) or hospitals (39.6%). A pattern of increasing hospital deaths reversed in 2006, with a subsequent decrease in hospital deaths (-0.93% per year, 95% CI -1.08 to -0.79 p < 0.001), and an increase in care home deaths (0.60% per year, 95% CI 0.45 to 0.75 p < 0.001). Care home death was more likely with older age (PR 1.11, 1.10 to 1.13), and in areas with greater care home bed provision (PR 1.82, 1.79 to 1.85) and affluence (PR 1.29, 1.26 to 1.31). Few patients died at home (4.8%) or hospice (0.3%). Home/hospice death was more likely in affluent areas (PR 1.23, 1.18 to 1.29), for women (PR 1.61, 1.56 to 1.65), and for those with cancer as underlying cause of death (PR 1.84, 1.77 to 1.91), and less likely in the unmarried (PRs 0.51 to 0.66)., Conclusions: Two in five people with dementia die in hospital. However, the trend towards increasing hospital deaths has reversed, and care home bed provision is key to sustain this. Home and hospice deaths are rare. Initiatives which aim to support the end of life preferences for people with dementia should be investigated.

Context: Most patient-reported outcome measurement tools in multiple sclerosis (MS) are geared toward less severely affected patients. Palliative care outcome measures have not been validated in patients with MS., Objectives: To assess the psychometric properties of the Core-Palliative Care Outcome Scale (Core-POS) and POS-MS-Symptoms (POS-MS-S) in patients severely affected by MS., Methods: Secondary analyses were conducted on data from a Phase II trial of palliative care in MS. Patients completed assessments using the following five scales: Core-POS, POS-MS-S, the Multiple Sclerosis Impact Scale, the United Kingdom Neurological Disability Scale, and the Expanded Disability Status Scale. Data quality, scaling assumptions, acceptability, internal consistency, and construct validity of the Core-POS and POS-MS-S were determined using standard psychometric methods., Results: The 46 participants had a mean ±SD age of 52.8 ±10.6 years. The mean Expanded Disability Status Scale score was 7.9 ± 1.2. Missing data were low (0 and 0.2% for the Core-POS and POS-MS-S, respectively), and floor and ceiling effects were absent. Internal consistency was good (Cronbach's alpha for the Core-POS and POS-MS-S were 0.72 [95% CI 0.56-0.84] and 0.81 [95% CI 0.72-0.89], respectively). Construct validity was consistent with a priori hypotheses 17 of 20 times., Conclusion: Psychometric analyses confirm that the Core-POS and POS-MS-S are acceptable, reliable, and valid in patients severely affected by MS., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

The role of estrogen in promoting mammary stem cell proliferation remains controversial. It is unclear if estrogen receptor (ER)-expressing cells have stem/progenitor activity themselves or if they act in a paracrine fashion to stimulate stem cell proliferation. We have used flow cytometry to prospectively isolate mouse mammary ER-expressing epithelial cells and shown, using analysis of gene expression patterns and cell type-specific markers, that they form a distinct luminal epithelial cell subpopulation that expresses not only the ER but also the progesterone and prolactin receptors. Furthermore, we have used an in vivo functional transplantation assay to directly demonstrate that the ER-expressing luminal epithelial subpopulation contains little in vivo stem cell activity. Rather, the mammary stem cell activity is found within the basal mammary epithelial cell population. Therefore, ER-expressing cells of the mammary epithelium are distinct from the mammary stem cell population, and the effects of estrogen on mammary stem cells are likely to be mediated indirectly. These results are important for our understanding of cellular responses to hormonal stimulation in the normal breast and in breast cancer.

Introduction: Breast cancer is thought to arise in mammary epithelial stem cells. There is, therefore, a large amount of interest in identifying these cells. The breast is a complex tissue consisting of two epithelial layers (an outer myoepithelial/basal layer and an inner luminal epithelial layer) as well as a large non-epithelial component (fibroblasts, endothelial cells, lymphocytes, adipocytes, neurons and myocytes). The definitive identification of a mammary epithelial stem cell population is critically dependent on its purity. To date, this has been hampered by the lack of suitable markers to separate out the two epithelial layers, and to remove contaminating non-epithelial cells., Methods: Mouse mammary glands were dissociated and stained with CD24. Cells were sorted into separate populations based on CD24 expression and assessed for luminal epithelial and myoepithelial/basal markers by direct fluorescent microscopy and real time PCR. The stem/progenitor potential of these cell populations was assessed in vivo by cleared mammary fat pad transplantation., Results: Three populations of CD24 expressing cells were identified: CD24Negative, CD24Low and CD24High. Staining of these cells with cytokeratin markers revealed that these populations correspond to non-epithelial, myoepithelial/basal and luminal epithelial cells, respectively. Cell identities were confirmed by quantitative PCR. Cleared mammary fat pad transplantation of these cell populations revealed that extensive mammary fat pad repopulation capacity segregates with the CD24Low cells, whilst CD24High cells have limited repopulation capacity., Conclusion: Differential staining of mammary epithelial cells for CD24 can be used to simultaneously isolate pure populations of non-epithelial, myoepithelial/basal and luminal epithelial cells. Furthermore, mammary fat pad repopulation capacity is enriched in the CD24Low population. As separation is achieved using a single marker, it will be possible to incorporate additional markers to further subdivide these populations. This will considerably facilitate the further analysis of mammary epithelial subpopulations, whilst ensuring high purity, which is key for understanding mammary epithelial stem cells in normal tissue biology and carcinogenesis.