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Purpose: Timely supportive and palliative care (SPC) integration in adolescent and young adult (AYA) cancer management is recommended in curative and palliative settings. However, multiple barriers exist to implementing this goal. Liverpool Cancer Therapy Center (LCTC) serviced a growing AYA (15–39 years) population without AYA-dedicated services and the vast majority receiving no SPC engagement. Concerned this was placing AYA patients' wellbeing at risk, we determined a cultural change was required and that the newly established AYA Supportive and Palliative Care (AYASPC) Service could facilitate this. Methods: The AYASPC Service conducted a 6-month quality improvement project aiming to increase its referrals from a baseline average of one per month to four per month, to increase confidence in making SPC referrals and to enhance appreciation for specialized AYA care. Interventions included formalizing an AYASPC referral pathway with broad indications, and educating clinicians on holistic AYA care, the AYASPC Service's model of care (MoC) and AYASPC referral benefits. Results: During the project, 27 AYASPC referrals were made. Referrals consistently exceeded the Service's baseline, and from 3 months onward exceeded the project target. Additionally, referrals were made earlier (29.6% at diagnosis), for a variety of cancer diagnoses with varied prognoses, and for indications beyond traditional issues of complex symptoms and end-of-life care. Clinicians also expressed greater confidence in supporting AYAs and making SPC referrals. Conclusion: In a brief timeframe, the AYASPC Service's innovative and adaptable MoC and project interventions sustainably improved AYASPC access and affected a positive cultural shift around AYA care and advocacy. [ABSTRACT FROM AUTHOR]

Background With growing emphasis on palliative care for neurodegenerative conditions, understanding trends in place of death helps improve quality of end-of-life care for people with Parkinson's disease and related disorders (PDRDs), focusing allocation of resources and training and identifying inequalities. Objectives Review national and regional place of death trends for people with PDRD including pre- and post-pandemic trends. Methods Mortality data for England and Wales (March 2018 and July 2022) were analysed with summary statistics and interrupted time series, exploring place of death for those who died with PDRD, with and without coexisting dementia, with reference to all deaths in England and Wales. Results Of 2,415,566 adult deaths, 56,790 included mention of PDRD. Hospital deaths were most common in people with PDRD (39.17%), followed by care homes (38.84%). People with PDRD were half as likely to die in hospice compared with the general population (2.03 vs 4.94%). Proportion of care home deaths fell significantly after March 2020 (40.6–37%, P  = 0.035). Regionally, London was an outlier with a lower proportion of deaths occurring in care homes with a higher proportion of hospital deaths. Conclusion Place of death for people with PDRD is changing, with more hospice and home deaths. People with PDRD, particularly those with co-existent dementia, are less likely to access inpatient hospice care than the general population. Since the COVID-19 pandemic, the proportion of care home deaths has reduced significantly with an increase in home deaths, with implications for service and resource allocation. [ABSTRACT FROM AUTHOR]

Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite the increased life-expectancy of children with life-limiting conditions. Aim: To explore adult siblings' perspectives on the experience of having a sister/brother with a childhood life-limiting condition and to identify their perceived needs and preferences for support. Design: A qualitative exploratory study design with data generated by semi-structured interviews and analysed using reflexive thematic analysis, underpinned by interpretivism. Setting/participants: Twenty-two siblings (17–42 years old) were recruited via a children's hospice in England. Results: The experience of having a sibling with a life-limiting condition changes over time in response to how understandings of the meaning of a life-limiting condition develop and changing roles/relationships with parents and siblings. These experiences have an enduring impact on adult sibling's mental health which is compounded by their unmet (and sometimes unrecognised) support needs in adolescence and adulthood. Siblings described the importance of support continuing into adulthood with a focus on the provision of psychotherapy and peer support. Conclusions: Having a sister/brother with a childhood life-limiting condition appeared to have a significant and ongoing impact on adult siblings but their support needs, particularly for psychotherapy and peer support, are overlooked. The findings highlight the importance of ensuring siblings are included in family assessments and that family-based interventions are developed to promote sibling-parent relationships. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To enhance your understanding of the risk of skeletal-related events in patients with bone metastases • To increase your awareness of the need to inform at-risk patients about metastatic spinal cord compression • To identify the potential benefits of monitoring, educating and supporting at-risk patients. Patients with bone metastases are at significant risk of skeletal-related events such as metastatic spinal cord compression (MSCC), pathological fractures and hypercalcaemia. There is increasing evidence to support the early recognition of, and intervention for, skeletal-related events resulting from bone metastases. To enable early diagnosis and treatment, patients and families need to know what signs and symptoms to look out for and be aware that they must promptly report them if they appear. This is particularly the case of MSCC, which is an oncological and palliative care emergency. This article outlines the development of a multidisciplinary palliative care bone metastases review service in England which provides monitoring, education and support to patients with bone metastases. The service has not yet been formally audited but initial achievements and feedback are promising. [ABSTRACT FROM AUTHOR]

Background: People living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by palliative care experts and could reduce inequalities. However, implementing ACP with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to support documentation and sharing of ACP records with relevant healthcare providers. This study explores the use of CMC amongst those with SMI and aims to describe how those with a primary diagnosis of SMI who have used CMC for ACP, and makes recommendations for future research and policy. Method: A retrospective observational cohort analysis was completed of CMC records created 01/01/2010–31/09/2021 where the service user had a primary diagnosis of SMI, with no exclusions based on comorbidities. Descriptive statistics were used to report on characteristics including: age, diagnosis, individual prognosis and resuscitation status. Thematic analysis was used to report on the content of patients' statements of preference. Results: 1826 records were identified. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of 'years' and most (63.1%) remained for full cardio-pulmonary resuscitation in the event of cardio-pulmonary arrest. Records with completed statements of preferences (20.3%) contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity, although most were brief and lacked expression of patient voice. Discussion: Compared to usual CMC users, the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. ADM is a service user-driven process, and so it was expected that authentic patient voice would be expressed within statements of preference, however this was mostly not achieved. Conclusions: This digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have used CMC to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice. [ABSTRACT FROM AUTHOR]

Background: Older people account heavily for palliative care needs at the population level and are growing in number as the population ages. There is relatively little high-quality data on symptom burden and quality of life, since these data are not routinely collected, and this group are under-recruited in primary research. It is unclear which measurement tools are best suited to capture burdens and experience. Methods: We recruited a cohort of 221 patients aged 75 + years with poor prognosis who had an unplanned admission via the emergency department in a large urban hospital in England between 2019 and 2020. Risk of dying was assessed using the CriSTAL tool. We collected primary data and combined these with routine health records. Baseline clinical data and patient reported quality of life outcomes were collected on admission and reassessed within the first 72 h of presentation using two established tools: EQ-5D-5 L, EQ-VAS and the Integrated Palliative Outcomes Scale (IPOS). Results: Completion rate was 68% (n = 151) and 33.1% were known to have died during admission or within 6 months post-discharge. The vast majority (84.8%) reported severe difficulties with at least one dimension of EQ-5D-5 L at baseline and improvements in EQ-VAS observed at reassessment in 51.7%. The baseline IPOS revealed 78.2% of patients rating seven or more items as moderate, severe or overwhelming, but a significant reduction (-3.6, p < 0.001) in overall physical symptom severity and prevalence was also apparent. No significant differences were noted in emotional symptoms or changes in communication/practical issues. IPOS total score at follow up was positively associated with age, having comorbidities (Charlson index score > = 1) and negatively associated with baseline IPOS and CriSTAL scores. Conclusion: Older people with poor prognosis admitted to hospital have very high symptom burden compared to population norms, though some improvement following assessment was observed on all measures. These data provide valuable descriptive information on quality of life among a priority population in practice and policy and can be used in future research to identify suitable interventions and model their effects. [ABSTRACT FROM AUTHOR]

Background: Digital health interventions are becoming increasingly important for adults, children, and young people with cancer and palliative care needs, but there is little research to guide policy and practice. Objectives: To identify recommendations for policy development of digital health interventions in cancer and palliative care. Design: Expert elicitation workshop. Setting: European clinical (cancer and palliative care, adult and pediatric), policy, technical, and research experts attended a one-day workshop in London, England, in October 2022, along with MyPal research consortium members. Methods: As part of the European Commission-funded MyPal project, we elicited experts' views on global, national, and institutional policies within structured facilitated groups, and conducted qualitative analysis on these discussions. Results/Implementation: Thirty-two experts from eight countries attended. Key policy drivers and levers in digital health were highlighted. Global level: global technology regulation, definitions, access to information technology, standardizing citizens' rights and data safety, digital infrastructure and implementation guidance, and incorporation of technology into existing health systems. National level: country-specific policy, compatibility of health apps, access to digital infrastructure including vulnerable groups and settings, development of guidelines, and promoting digital literacy. Institutional level: undertaking a needs assessment of service users and clinicians, identifying best practice guidelines, providing education and training for clinicians on digital health and safe digital data sharing, implementing plans to minimize barriers to accessing digital health care, minimizing bureaucracy, and providing technical support. Conclusions: Developers and regulators of digital health interventions may find the identified recommendations useful in guiding policy making and future research initiatives. MyPal child study Clinical Trial Registration NCT04381221; MyPal adult study Clinical Trial Registration NCT04370457 [ABSTRACT FROM AUTHOR]

Objective: Psychological distress is common in palliative care patients. The 2004 National Institute of Healthcare and Excellence (NICE) guidance for supportive and palliative care for adults with cancer, which remains contemporary, recognised that access to psychological support was inconsistent and often inadequate. Their 4-tier model requires multidisciplinary psychological assessment at key points. Implicit is the need for improved training and support for staff and equity in service provision. This survey was designed to determine the levels of self-reported competence amongst healthcare staff in the psychological assessment and screening of patients in adult hospices in England and their awareness of the NICE guidelines. Methods: A short anonymised online questionnaire was sent to 164 hospices to determine perceptions of healthcare professionals (HCPs) on their own competence in screening and assessment of distress, provision of therapies and levels of training and supervision. Results: Responses were received from 140 HCPs in approximately thirty-eight hospices. Key findings included self-reported needs for training and supervision. Over a quarter of nurses (28.8%) and AHPs (27.8%) had no level 2 training, and only half of nurses, AHPs and physicians were aware of the NICE guidelines. Access to level 3 specialist psychological services was lacking and some HCPs felt unable to screen and assess patients for referral to specialist services. Conclusions: Consistent, standardised training in assessment of psychological needs is required to ensuring delivery of high-quality care for psychological needs. Areas for future development identified include essential communication skills and high-quality supervision for those delivering psychotherapeutic interventions. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To recognise the benefits of service user involvement in healthcare education for learning and practice • To understand how grief and bereavement can affect the parents of children in palliative care services • To identify the need to develop meaningful partnerships between academics and service users to achieve authentic, person-centred healthcare education Children's nurses report feeling unprepared when caring for children with life-limiting conditions and their families, while the value of including service users in the provision of nursing education is increasingly recognised. This small-scale service evaluation examined the effect on learning of service user-led workshops as part of a module for final-year children's nursing students and post-registration children's nurses. The workshops focused on the experience of children's palliative care and child bereavement from the parents' perspective. Findings from evaluation data indicated high levels of satisfaction with the workshops and identified three themes: safe space, shift in perspective and enhancing practice. A model of service user facilitated learning describes how these themes can enable learning about children's palliative care. This evaluation suggests that the involvement of service users as partners in healthcare education can be transformative, enabling children's nursing students to examine their own perspectives and consider ways to enhance their future practice. [ABSTRACT FROM AUTHOR]

Background: England's South-west Peninsula is largely rural, has a high proportion of over 65s, and has areas of rural and coastal deprivation. Rural and low-income populations face inequities at end of life and little is known about the support needs of rural, coastal and low-income communities. Objectives: To understand how to foster community support for dying and grieving well, a regional, multi-sectoral research partnership developed a community engagement programme to explore experiences of seeking support, issues important to people and the community support they valued. This article shares what people told us about the role that communities can play at end of life, and reflects on learning from our process of engaging communities in conversations about dying. Design and methods: A programme of varied community engagement which included: the use of the 'Departure Lounge' installation and four focus groups with interested individuals in a range of community settings; the co-creation of a 'Community Conversation' toolkit to facilitate conversations with individuals with experience of end-of-life care and their carers with Community Builders; a focus group with Community Builders and a storytelling project with three bereaved individuals. Results: People valued community support at the end of life or in bereavement that offered connection with others, peer support without judgement, responded to their individual needs and helped them to access services. Creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Collaboration with existing community groups was key to engagement, and contextual factors influenced levels of engagement. Conclusion: Local community organizations are well placed to support people at end of life. This work highlighted the potential for partnership with palliative care and bereavement organizations, who could offer opportunities to develop people's knowledge and skills, and together generate sustainable solutions to meet local need. [ABSTRACT FROM AUTHOR]

Background: Hospice-at-home aims to enable patients approaching end-of-life to die at home and support their carers. A wide range of different service models exists but synthesised evidence on how best to support family carers to provide sustainable end-of-life care at home is limited. Aim: To explore what works best to promote family carers' experiences of hospice-at-home. Design: Realist evaluation with mixed methods. This paper focuses on qualitative interviews with carers (to gain their perspective and as proxy for patients) and service providers from 12 case study sites in England. Interviews were coded and programme theories were refined by the research team including two public members. Setting/participants: Interviews with carers (involved daily) of patients admitted to hospice-at-home services (n = 58) and hospice-at-home staff (n = 78). Results: Post bereavement, 76.4% of carers thought that they had received as much help and support as they needed and most carers (75.8%) rated the help and support as excellent or outstanding. Of six final programme theories capturing key factors relevant to providing optimum services, those directly relevant to carer experiences were: integration and co-ordination of services; knowledge, skills and ethos of hospice staff; volunteer roles; support directed at the patient–carer dyad. Conclusions: Carers in hospice-at-home services identified care to be of a higher quality than generic community services. Hospice staff were perceived as having 'time to care', communicated well and were comfortable with dying and death. Hands-on care was particularly valued in the period close to death. [ABSTRACT FROM AUTHOR]

Background and Aims: The World Health Assembly recommends integration of palliative care into treatment of patients with any life‐limiting condition, yet patients with non‐malignant disease are less likely to receive specialist palliative care (SPC). This study compares SPC offered to patients with hepatocellular carcinoma (HCC) versus patients with chronic liver disease without HCC (CLD without HCC). Methods: Patients who died from CLD or HCC over 5 years (2013–2017) in England were identified using a dataset linking national data on all hospital admissions (Hospital Episode Statistics – HES) with national mortality data from the Office for National Statistics (HES – ONS). The primary outcome was the proportion of patients who received inpatient SPC in their last year of life (LYOL). Secondary outcomes were (1) early inpatient SPC input and (2) the proportion dying in a hospice. The outcomes were compared between patients with HCC and CLD without HCC. Results: 29 669 patients were identified, 8143 of whom had HCC. Patients with HCC were significantly more likely to receive inpatient SPC input—adjusted OR 3.74 (95% CI 3.52–3.97) and early inpatient SPC input—adjusted OR 7.26 (95% CI 6.38–8.25) and die in a hospice OR 8.23 (95% CI 7.33–9.24) than patients with CLD without HCC. Conclusions: These data highlight the stark inequity in access to SPC services between patients with HCC and patients with CLD without HCC in England. Addressing these inequities will improve end‐of‐life care for patients with CLD. [ABSTRACT FROM AUTHOR]

Background: Digital legacy refers to the online content available about someone following their death. This may include social media profiles, photos, blogs or gaming profiles. Some patients may find it comforting that their digital content remains online, and those bereaved may view it as a way to continue bonds with the deceased person. Despite its growing relevance, there is limited evidence worldwide around the experiences of palliative care professionals in supporting patients to manage their digital legacy. Aim: To identify palliative care healthcare professionals' experiences of supporting patients receiving palliative care in managing digital legacy as part of advance care planning discussions. Design: A constructivist grounded theory approach was used to understand healthcare professionals' experiences of managing digital legacy. Semi-structured interviews were carried out. Setting and participants: Participants were 10 palliative care healthcare professionals from across the multidisciplinary team working in a hospice in the North-West of England. Results: Four theoretical categories were found to revolve around an emergent theory 'understanding the impact of digital legacy' which describe the experiences of palliative care healthcare professionals managing digital legacy as part of advance care planning. These were ' accessing digital legacy '; ' becoming part of advance care planning '; ' impacting grief and bereavement '; and ' raising awareness of digital legacy '. Conclusions: The emerging theory ' understanding the impact of digital legacy ' offers insight into the knowledge and experiences of healthcare professionals working in a palliative care setting. Digital assets were viewed as being equally as important as physical assets and should be considered as part of advance care planning conversations. [ABSTRACT FROM AUTHOR]

Background: Malignant pleural effusions (MPEs) are common. They are associated with a poor prognosis and high symptom burden. Previous studies have focused primarily on breathlessness. Aim: To evaluate whether interventions to treat MPEs impact on fatigue levels and to test the feasibility of the methodology. Methods: A prospective pilot study was conducted at a single Trust's adult pleural service over a 7 month period. It used a validated outcome measure, Functional Assessment of Chronic Illness Therapy–Fatigue (FACIT-F) to assess fatigue levels pre-intervention for MPE, which was repeated at 7, 14 and 30 days intervals. Data were gathered on patient demographics and potential confounding factors. The feasibility of the methodology was assessed. Recruitment targets had to be revised due to the COVID-19 pandemic. Results: Mean age was 73 years (range 44 to 88), with a predominance of lung cancer and mesothelioma (n=16/25). Patients were willing to participate and the methodology appeared acceptable. High attrition rate was due to deteriorating participant health, rather than unacceptability of study design. For those who completed 30-day follow up (n=11/25), there was an improvement in fatigue scores. The majority of patients screened were recruited to the trial. Conclusion: This study met its aims in confirming the acceptability of the study protocol and suggested that intervention for MPE improved fatigue levels. However, the sample size was small and a further larger statistically powered study should be undertaken before conclusions can be drawn to influence clinical practice. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Since 2015, the Ambitions for Palliative and End of Life Care: a national framework for local action has provided guidance for care within England and beyond. Relaunched in 2021, the Framework sets out six Ambitions which, collectively, provide a vision to improve how death, dying and bereavement are experienced and managed. However, to date, there has been no central evaluation of how the Framework and its Ambitions have been implemented within service development and provision. To address this evidence gap, we investigated understanding and use of the Framework. Methods: An online questionnaire survey was conducted to identify where the Framework has been used; examples of how it has been used; which Ambitions are being addressed; which foundations are being used; understanding of the utility of the Framework; and understanding of the opportunities and challenges involved in its use. The survey was open between 30 November 2021–31 January 2022, promoted via email, social media, professional newsletter and snowball sampling. Survey responses were analysed both descriptively, using frequency and cross-tabulations, and exploratively, using content and thematic analysis. Results: 45 respondents submitted data; 86% were from England. Findings indicate that the Framework is particularly relevant to service commissioning and development across wider palliative and end of life care, with most respondents reporting a focus on Ambition 1 (Each person is seen as an individual) and Ambition 3 (Maximising comfort and wellbeing). Ambition 6 (Each community is prepared to help) was least likely to be prioritised, despite people welcoming the focus on community in national guidance. Of the Framework foundations, 'Education and training' was seen as most necessary to develop and/or sustain reported services. The provision of a shared language and collaborative work across sectors and partners were also deemed important. However, there is some indication that the Framework must give more prioritisation to carer and/or bereavement support, have greater scope to enhance shared practice and mutual learning, and be more easily accessible to non-NHS partners. Conclusions: The survey generated valuable summary level evidence on uptake of the Framework across England, offering important insights into current and past work, the factors impacting on this work and the implications for future development of the Framework. Our findings suggest considerable positive potential of the Framework to generate local action as intended, although difficulties remain concerning the mechanisms and resources necessary to enact this action. They also offer a valuable steer for research to further understand the issues raised, as well as scope for additional policy and implementation activity. [ABSTRACT FROM AUTHOR]

Background: The accuracy of prognostication has important implications for patients, families, and health services since it may be linked to clinical decision-making, patient experience and outcomes and resource allocation. Study aim is to evaluate the accuracy of temporal predictions of survival in patients with cancer, dementia, heart, or respiratory disease. Methods: Accuracy of clinical prediction was evaluated using retrospective, observational cohort study of 98,187 individuals with a Coordinate My Care record, the Electronic Palliative Care Coordination System serving London, 2010–2020. The survival times of patients were summarised using median and interquartile ranges. Kaplan Meier survival curves were created to describe and compare survival across prognostic categories and disease trajectories. The extent of agreement between estimated and actual prognosis was quantified using linear weighted Kappa statistic. Results: Overall, 3% were predicted to live "days"; 13% "weeks"; 28% "months"; and 56% "year/years". The agreement between estimated and actual prognosis using linear weighted Kappa statistic was highest for patients with dementia/frailty (0.75) and cancer (0.73). Clinicians' estimates were able to discriminate (log-rank p < 0.001) between groups of patients with differing survival prospects. Across all disease groups, the accuracy of survival estimates was high for patients who were likely to live for fewer than 14 days (74% accuracy) or for more than one year (83% accuracy), but less accurate at predicting survival of "weeks" or "months" (32% accuracy). Conclusion: Clinicians are good at identifying individuals who will die imminently and those who will live for much longer. The accuracy of prognostication for these time frames differs across major disease categories, but remains acceptable even in non-cancer patients, including patients with dementia. Advance Care Planning and timely access to palliative care based on individual patient needs may be beneficial for those where there is significant prognostic uncertainty; those who are neither imminently dying nor expected to live for "years". [ABSTRACT FROM AUTHOR]

Background: There is uncertainty about the factors influencing inequities in access to palliative care in socially deprived areas, including the role of service models and professional perceptions. Aim: To explore the relationship between social deprivation and access to hospice care, including factors influencing access and professional experiences of providing care. Design: A mixed-methods multiple case study approach was used. Hospice referrals data were analysed using generalised linear mixed models and other regression analyses. Qualitative interviews with healthcare professionals were analysed using thematic analysis. Findings from different areas (cases) were compared in a cross-case analysis. Setting: The study took place in North West England, using data from three hospices (8699 hospice patients) and interviews with 42 healthcare professionals. Results: Social deprivation was not statistically significantly, or consistently, associated with hospice referrals in the three cases (Case 1, Incidence Rate Ratio 1.04, p = 0.75; Case 2, Incidence Rate Ratio 1.09, p = 0.15, Case 3, Incidence Rate Ratio 0.88, p = 0.35). Hospice data and interviews suggest the model of hospice care, including working relationship with hospitals, and the local nature of social deprivation influenced access. Circumstances associated with social deprivation can conflict with professional expectations within palliative care. Conclusion: Hospice care in the UK can be organised in ways that facilitate referrals of patients from socially deprived areas, although uncertainty about what constitutes need limits conclusions about equity. Grounding professional narratives around expectations, responsibility, and choice in frameworks that recognise the sociostructural influences on end-of-life circumstances may help to foster more equitable palliative care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care. Aim: The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices. Methods: Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis. Findings: Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited. Conclusion: Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes. [ABSTRACT FROM AUTHOR]

Background: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children’s palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care. Aim: This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what ‘good’ palliative care is. Design: Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry. Setting/participants: Participants were parents of children and young people (aged 0–17 years) in England, who were receiving palliative care, and parents whose child had died. Results: Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children’s hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life. Conclusions: Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care. [ABSTRACT FROM AUTHOR]

Background: Nurses in high-dependency units frequently facilitate the withdrawal of life-sustaining treatments and provide end-of-life care. Providing this care has been shown to cause distress, burnout and cumulative grief. There remains a lack of understanding of high dependency nurses' experiences of caring for patients approaching withdrawal of life-sustaining treatments. Aim: To explore experiences of high dependency nurses caring for patients approaching withdrawal of life-sustaining treatment and highlight any support or needs they may have. Methods: Interviews were conducted and analysed using qualitative thematic analysis. Findings: Nurses experienced conflict in decision making, which was reported to prolong patient distress and cause nurses moral anguish. Nurses need time to talk and further education to support them to provide withdrawal of life-sustaining treatment. Conclusion: High-dependency nurses need time to talk following caring for this patient group and more extensive education to support them to provide quality end-of-life care. [ABSTRACT FROM AUTHOR]

The Liverpool Care Pathway for the Dying Patient (LCP) was a prominent set of guidance in the late 2000s and early 2010s within palliative and end‐of‐life care. Developed in England to improve the care of dying patients, it was later adopted in 20 counties. After a public scandal, it was removed from practice in England but remains in other locations, including the Netherlands. Drawing on two sets of ethnographic data, from England and the Netherlands, we consider the ways in which the LCP was engaged with as a form of standardisation aimed at improving practice, how it was deployed in relation to other forms of knowledge, and the political and moral statements that are being made through the (selective) use of it. Looking into the use of the LCP shows that, while the LCP attempts to standardise some of the values associated with palliative care, there are significant differences between how these standardised values are then enacted in different institutional and national contexts and by different individual care professionals. We conclude that the LCP was used to impart moral values, establish protocols of care, and demonstrate professionalism, showing the multiplicity of the use of standards in healthcare practice. [ABSTRACT FROM AUTHOR]

Significant disparities continue to exist in access to inpatient pediatric hospice care among children at the end-of-life. Increasingly more children at this stage are dying in the hospital or at home on hospice which is not always an acceptable option to the children and their families. Two clinical case examples illustrate implementation of these options in practice. A missing link exists in healthcare systems across developed and developing countries in pediatric end-of-life care. Currently, the primary options involve selecting between hospital and home-based hospice care. Proposing to increase access to inpatient pediatric hospice services could potentially increase acceptability of this option to honor the child in line with the family's preferences, goals, wishes, and values. In addition, inpatient pediatric hospice could offset costs from preventable hospitalizations and overall high-cost healthcare utilization. Oftentimes, readmissions impact decision-making among caregivers that include changes in code status from Do Not Resuscitate/Do Not Intubate (DNR/DNI) to full curative care, thereby resulting in medicalization or overmedicalization of the child. It follows that reduced healthcare expenditures will increase cost efficiency across the healthcare system. Achieving health equity in palliative care among adult and pediatric patients at the end-of-life is a longstanding goal of the World Health Organization (WHO) and the United Nations International Children's Emergency Fund (UNICEF). Proposing to mitigate disparities in palliative care among children through inpatient hospice as another viable option for their families could contribute to the larger overarching goal of achieving health equity in end-of-life care across the world. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Context: There is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness.Objectives: To evaluate older patients' (≥65 years) preferences for elements of services and supports and to explore relationships between patient characteristics and the patterns of preferences.Methods: A cross-sectional survey undertaken in Ireland and England using a Discrete Choice Experiment with people accessing specialist palliative care services. A random-effects probit model was used to estimate patient preferences.Results: Of the 77 patients were interviewed, 51 participated in the Discrete Choice Experiment component of the interview (response rate = 66%). Participants prioritized support that minimized unpaid caregiver burden (P < 0.001). They also preferred ease of access to services including out-of-hours access (P < 0.001) and free care at home (P < 0.001). Quality of life was prioritized over quantity of life (<0.001).Conclusion: People living with a life-limiting illness value care that focuses on quality of life, ensures barrier-free access to services and provides sufficient support for relatives. In the context of limited resources and growing demand for care, this study provides evidence about the service elements palliative care delivery models should prioritize and evaluate. [ABSTRACT FROM AUTHOR]

Background: More people are dying at home with dementia and Alzheimer's disease. While informal caregivers are the main providers of care for people with dementia dying at home, they require support from health and social care services. However, little is known about how they experience these services. Aim: To explore informal caregivers' views and experiences of health and social care services when looking after a person with dementia at home at the end-of-life. Design: A qualitative interview study. Data were analysed using thematic analysis. Setting/Participants: Twenty-nine bereaved informal caregivers who had looked after a person with dementia at home during the last 6 months of life. Results: Specialist palliative care for people with dementia dying at home is rare and care is mostly managed by General Practitioners and domiciliary care workers. Four overarching themes were identified: Poor continuity of care; Lack of expertise; Limited advance care planning; and Loss of autonomy. Conclusions: End-of-life care at home for people with dementia must be proactively planned with an emphasis on advance care planning. Policy makers should recognise the critical role of domiciliary care services in end-of-life care and ensure that they are adequately qualified and trained. [ABSTRACT FROM AUTHOR]

Previous work found referrals for end-of-life care are made late in the dying process and assessment processes for care funding, through continuing healthcare fast-track funding often inhibit people being able to die at home. The average time to discharge was 6.3 days and 29% died in hospital, as median survival was only 15 days.We aimed to support discharge to home within 1 day by December 2023 for patients, wishing to die at home, referred to the end-of-life discharge team in a medium-sized district general hospital in Southwest England.In phase 1, we identified 13 people on a patient-by-patient basis, learning from obstacles. Barriers identified included sourcing of equipment, communication between teams and clunky paperwork. Median time to discharge was 2 days (range within 24 hours to 8 days) with 2/13 (15.4%) dying prior to discharge. In phase 2, we extended the pilot, and 104 patients were identified; 94 people were discharged to home, with a median of wait of 1 day (range 0-7) to discharge, and 10 (9.6%) died prior to discharge (median 1 day; range 0-4). Median survival from discharge for the 94 who achieved their wishes to go home to die was 9 days (range 1-205 days). Only 26/94 (27.7%) people survived more than 30 days.Rapid decision-making and structures to support home-based end-of-life care can support more people to die in their preferred place of care, by using a community-based rapid response team instead of, or in parallel with continuing healthcare fast-track funding referral applications. Current pathways and funding models are not fit for purpose in an urgent care scenario when we have only one chance to get it right., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Initiatives to promote health and reduce inequalities in place-based communities have increasingly adopted asset-based approaches (ABAs). However, the processes through which such initiatives might reduce inequalities are not well understood, and evidence of their impact on health is still limited. This study aimed to understand how ABAs can impact practices, relationships and the redistribution of resources to reduce health inequalities in and between less advantaged neighbourhoods. Qualitative research was conducted in two settings (England and Spain) where similar asset-based initiatives, aimed at training community members to become health promoters, were being implemented. Data were collected using theory of change workshops, 120 hours of observations and semi-structured interviews with 44 stakeholders (trained community members, voluntary and community sector organizations' workers and health professionals). A thematic analysis informed by systems thinking was carried out. Three main processes of change were identified: first, 'enabling asset-based thinking' defined as supporting people to adopt a view that values their own resources and people's skills and expertise. Second, 'developing asset-based capacities', described as developing personal skills, knowledge, self-confidence and relationships underpinned by asset-based thinking. Finally, 'changing decision-making and wider health determinants through ABAs' referred to achieving changes in neighbourhoods through mobilizing the asset-based capacities developed. These processes were associated with changes at an individual level, with potential to contribute to reducing inequalities through supporting individual empowerment and social capital. However, contextual factors were found key to enable or hinder changes in the neighbourhoods and acted as barriers to processes of collective empowerment, thus limiting ABAs' impact on health inequalities., (© The Author(s) 2024. Published by Oxford University Press.)

Background: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. Aim: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. Design: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. Setting/participants: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. Findings: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child's best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child's psychosocial wellbeing. Conclusions: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals' moral reasoning may assist the process of shared decision-making. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The aim of this paper was to understand the needs of family caregivers and professionals supporting people living with dementia with eating and drinking difficulties towards the end of life and the strategies they use to overcome them. A total of 41 semi‐structured interviews with family caregivers (n = 21) and professionals (n = 20) were conducted in London and surrounding areas of England. Interviews were audio‐recorded and transcribed verbatim. Four themes were identified: caregivers accessing and seeking help, perceived priorities of care, professionals' supportiveness and educational role, and strategies. Caregivers often struggle as they are not aware of the eating and drinking difficulties associated with dementia's progression. Care can change over time with families prioritising a person's comfort towards the end of life rather than ensuring a particular level of nutrition. Mutual support is required by both professionals and caregivers to enhance the care of the person living with dementia. Cognitive difficulties are often behind initial eating and drinking challenges in dementia, whereas physical challenges take over towards the later stages. Flexibility and creativity are key to adapting to changing needs. There is a need to raise awareness of the eating and drinking challenges associated with the progression of dementia. Professionals can help caregivers embark on the transition towards focussing on comfort and enjoyment of eating and drinking near the end of life rather than nutrition. This is particularly relevant for those caring for a relative living at home. Caregivers' input is needed to tailor professionals' recommendations. [ABSTRACT FROM AUTHOR]

Background: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. Aim: To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. Design/participants: Eight focus groups in Australia and England with care home staff and palliative care specialists (n = 49). Reflexive thematic analysis was undertaken. Findings: Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care; the importance of relationships to overcome deficiencies in formal processes; and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed; this closely linked to care home procedures in Australia but was less apparent in England. Conclusion: In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions. [ABSTRACT FROM AUTHOR]

Background Pharmacists are important members of multidisciplinary teams but, despite surveys of provision, the role of the hospice pharmacist is not well described. Objective To explore the role of the hospice pharmacist and identify barriers and facilitators to the role. Setting Hospices offering in-patient services caring for adults towards the end of life in one geographical area of northern England. Method Pharmacists providing services to hospices were invited to take part in qualitative semi-structured interviews asking about experience, patient contact, team working and barriers and facilitators to the role. These were recorded verbatim and data were analysed thematically using framework analysis. Main outcome measure The hospice pharmacist's perceptions of their role and barriers and facilitators to it. Results Fifteen pharmacists took part. Two themes and ten subthemes were identified focused on tasks and communication. Practise was varied and time limited the quantity and depth of services carried out but was often spent navigating complex drug supply routes. Participants found methods of communication suited to the hours they spent in the hospice although communication of data was a barrier to effective clinical service provision. Participants identified the need for appropriate training and standards of practice for hospice pharmacists would enable better use of their skills. Conclusion Barriers to the role of hospice pharmacist include time, access to role specific training, access to clinical information and complex medicines supply chains. The role would benefit from definition to ensure that hospices are able to use hospice pharmacists to their greatest potential. [ABSTRACT FROM AUTHOR]

Background: Previous studies showed increasing number of children with a life-limiting or life-threatening condition who may benefit from input from pediatric palliative care services. Aim: To estimate the current prevalence of children with a life-limiting condition and to model future prevalence of this population. Design: Observational study using national inpatient hospital data. A population-based approach utilizing ethnic specific population projections was used to estimate future prevalence. Setting/participants: All children aged 0–19 years with a life-limiting condition diagnostic code recorded in Hospital Episodes Statistics data in England from 2000/01 to 2017/18. Results: Data on 4,543,386 hospital episodes for 359,634 individuals were included. The prevalence of children with a life-limiting condition rose from 26.7 per 10,000 (95%CI 26.5–27.0) in 2001/02 to 66.4 per 10,000 (95% CI: 66.0–66.8) in 2017/18. Using a more restricted definition of a life-limiting condition reduced the prevalence from 66.4 to 61.1 per 10,000 (95%CI 60.7–61.5) in 2017/18. Highest prevalence was in the under 1-year age group at 226.5 per 10,000 and children with a congenital abnormality had the highest prevalence (27.2 per 10,000 (95%CI: 26.9–27.5)). The prevalence was highest among the most deprived group and in children of Pakistani origin. Predicted future prevalence of life-limiting conditions ranged from 67.0 (95%CI 67.7–66.3) to 84.22 (95%CI 78.66–90.17) per 10,000 by 2030. Conclusions: The prevalence of children with a life-limiting or life-threatening condition in England has risen over the last 17 years and is predicted to increase. Future data collections must include the data required to assess the complex health and social care needs of these children. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition.Methods: Comparative national longitudinal cohort study using linked primary and secondary care data from the Clinical Practice Research Datalink in England. Maternal-child dyads were identified in these data. Maternal physical and mental health outcomes were identified in the primary and secondary care datasets using previously developed diagnostic coding frameworks. Incidence rates of the outcomes were modelled using Poisson regression, adjusting for deprivation, ethnicity and age and accounting for time at risk.Results: A total of 35 683 mothers; 8950 had a child with a life-limiting condition, 8868 had a child with a chronic condition and 17 865 had a child with no long-term condition.The adjusted incidence rates of all of the physical and mental health conditions were significantly higher in the mothers of children with a life-limiting condition when compared with those mothers with a child with no long-term condition (eg, depression: incidence rate ratio (IRR) 1.21, 95% CI 1.13 to 1.30; cardiovascular disease: IRR 1.73, 95% CI 1.27 to 2.36; death in mothers: IRR 1.59, 95% CI 1.16 to 2.18).Conclusion: This study clearly demonstrates the higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life-limiting condition. Further research is required to understand how best to support these mothers, but healthcare providers should consider how they can target this population to provide preventative and treatment services. [ABSTRACT FROM AUTHOR]

Background: People from ethnic minority groups and deprived socioeconomic backgrounds have worse outcomes from COVID-19. Aim: To examine associations between ethnicity and deprivation with timing of palliative care referral for inpatients with COVID-19. Design: Service evaluation of consecutive patients with COVID-19 referred to palliative care. Sociodemographic (including age, sex, Index of Multiple Deprivation, ethnicity coded as White/non-White) and clinical variables were described. The primary outcome was timing of referral to palliative care. Associations between ethnicity and socioeconomic deprivation with the primary outcome were explored using multivariable regression. Setting/participants: Patients with COVID-19 referred to a hospital palliative care service across two London hospitals February–May 2020. Results: A total of 334 patients were included. 119 (36%) were from a non-White ethnic group; most commonly Black British (77, 23%) and Asian British (26, 8%). A longer time between admission and palliative care referral was associated with male gender (IRR 1.23, 95% CI 1.14–1.34) and lower levels of socioeconomic deprivation (IRR 1.61, 95% CI 1.36–1.90) but not ethnicity (IRR = 0.96, 95% CI 0.87–1.06). Conclusions: This large service evaluation showed no evidence that patients from ethnic minority or more deprived socioeconomic groups had longer time to palliative care referral. Ongoing data monitoring is essential for equitable service delivery. [ABSTRACT FROM AUTHOR]

Background: To be able to provide high-quality palliative care, there need to be a number of organizational structures available in the nursing homes. It is unclear to what extent such structures are actually present in nursing homes in Europe. We aim to examine structural indicators for quality of palliative care in nursing homes in Europe and to evaluate the differences in terms of availability of and access to palliative care, infrastructure for residents and families, multidisciplinary meetings and quality improvement initiatives. Methods: A PACE cross-sectional study (2015) of nursing homes in Belgium, England, Finland, Italy, the Netherlands and Poland. Nursing homes (N = 322) were selected in each country via proportional stratified random sampling. Nursing home administrators (N = 305) filled in structured questionnaires on nursing home characteristics. Organization of palliative care was measured using 13 of the previously defined IMPACT structural indicators for quality of palliative care covering four domains: availability of and access to palliative care, infrastructure for residents and families, multidisciplinary meetings and quality improvement initiatives. We calculated structural indicator scores for each country and computed differences in indicator scores between the six countries. Pearson's Chi-square test was used to compute the p-value of each difference. Results: The availability of specialist palliative care teams in nursing homes was limited (6.1–48.7%). In Finland, Poland and Italy, specialist advice was also less often available (35.6–46.9%). Up to 49% of the nursing homes did not provide a dedicated contact person who maintained regular contact with the resident and relatives. The 24/7 availability of opioids for all nursing home residents was low in Poland (37.5%). Conclusions: This study found a large heterogeneity between countries in the organization of palliative care in nursing homes, although a common challenge is ensuring sufficient structural access to specialist palliative care services. Policymakers and health and palliative care organizations can use these structural indicators to identify areas for improvement in the organization of palliative care. [ABSTRACT FROM AUTHOR]

Objective: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people).Methods: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12-18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19-24 years). Findings were shared with participants, and feedback helped to interpret the findings.Results: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this.Conclusion: Young people's priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified. [ABSTRACT FROM AUTHOR]

Aims: To evaluate care planning in advance of end‐of‐life care in care homes. Design: A qualitative study. Methods: Qualitative data were collected from January 2018–July 2019 (using focus groups and semi‐structured interviews) from three care homes in the South West of England. The data were analysed using thematic analysis followed by Critical Realist Evaluation. Results: Participants comprised of registered nurses (N = 4), care assistants (N = 8), bereaved relatives (N = 7), and domiciliary staff (N = 3). Although the importance of advance care planning was well recognized, the emotional labour of frequently engaging in discussions about death and dying was highlighted as a problem by some care home staff. It was evident that in some cases care home staff's unmet emotional needs led them to rushing and avoiding discussions about death and dying with residents and relatives. A sparsity of mechanisms to support care home staff's emotional needs was noted across all three care homes. Furthermore, a lack of training and knowledge appeared to inhibit care home staff's ability to engage in meaningful care planning conversations with specific groups of residents such as those living with dementia. The lack of training was principally evident amongst non‐registered care home staff and those with non‐formal caring roles such as housekeeping. Conclusion: There is a need for more focused education to support registered and non‐registered care home staff to effectively engage in sensitive discussions about death and dying with residents. Furthermore, greater emotional support is necessary to help build workforce resilience and sustain change. Impact: Knowledge generated from this study can be used to inform the design and development of future advance care planning interventions capable of supporting the delivery of high‐quality end‐of‐life care in care homes. [ABSTRACT FROM AUTHOR]

Background: People residing in UK homeless hostels experience extremely high rates of multi-morbidity, frailty and age-related conditions at a young age. However, they seldom receive palliative care with the burden of support falling to hostel staff. Aim: To evaluate a model embedding palliative specialists, trained as 'homelessness champions', into hostels for two half-days a month to provide support to staff and residents and facilitate a multidisciplinary approach to care. Design: An exploratory qualitative design. Setting/participants: Four homeless hostels in London, UK, including nine hostel managers/support staff and seven palliative care specialists (five nurses and two social workers). Results: Benefits to introducing the model included: developing partnership working between hostel staff and palliative care specialists, developing a holistic palliative ethos within the hostels and improving how hostel staff seek support and connect with local external services. Challenges to implementation included limited time and resources, and barriers related to primary care. Conclusion: This is the first evaluation of embedding palliative care specialists within homeless hostels. Inequity in health and social care access was highlighted with evidence of benefit of this additional support for both hostel staff and residents. Considering COVID-19, future research should explore remote ways of working including providing in-reach support to homelessness services from a range of services and organisations. [ABSTRACT FROM AUTHOR]

A collaborative study was undertaken by palliative care and public health on behalf of Chorley & South Ribble and Greater Preston Clinical Commissioning Groups. Going beyond a traditional needs assessment by providing projections of local palliative and end-of-life care needs in all conditions over 20 years, the study will support locality commissioning and development of appropriate health care services. Population-based needs assessment involving secondary analysis of routinely available regional mortality and population data for Central Lancashire (2017). Palliative care need was estimated using three different recognised methods. These estimates were combined with routinely available population and mortality projections and observed trends in palliative care need to provide projections up to 2040. Palliative care need in 2017 in Chorley & South Ribble and Greater Preston is estimated to be between 75% (1292) and 97% (1670), and 74.9% (1337) and 95.7% (1710) of all deaths, respectively. By 2040, the annual need is projected to increase compared with 2017 figures, by 24.2–55.9% (314–729 more deaths) in Chorley & South Ribble and by 13.4–41.4% (180–554 more deaths) in Greater Preston. The numbers of deaths from dementia are forecast to increase by three-fold in both localities. This study demonstrates practical application of public health data to support the development of locally responsive palliative care services. Dissemination of findings from this needs assessment on rising palliative care need, including numbers of deaths in different disease groups, provides direction to plan appropriate, equitable and sustainable services. Rapidly growing dementia deaths deserve particular attention in the planning of care. Collaborative work between public health and palliative care in other settings is encouraged, and will likely increase in significance as the full impact of COVID-19 is felt. [ABSTRACT FROM AUTHOR]

Oral symptoms in a growing number of palliative care patients are often neglected. Dental professionals are not always involved in palliative care. Oral care is often inadequately delivered to palliative care patients, while oral problems can affect the quality of life. A qualitative study was conducted to explore oral care experiences of palliative care patients, their relatives, and health care professionals (HCPs). Four patients, 4 relatives, and 4 HCPs were interviewed in a hospice. Transcripts were analyzed using thematic analysis and revealed 3 themes. Patients who were capable of performing oral care mainly brushed their teeth and looked after their dentures. Other care tended to be carried out by relatives and HCPs, adapted based on a person's level of consciousness. When describing the effects on oral health, relatives and HCPs tended to focus on xerostomia, whereas patients provided detailed accounts denoting the psychological and social impact of oral symptoms. Perceptions of enablers and barriers to oral care differed between groups. Patients reported lack of access to professional dental care and patients' fatigue were the main barriers to oral care. Nevertheless, there is great scope for further research into good oral care practices identified in this study and possible implementation in other settings. [ABSTRACT FROM AUTHOR]

Early advance care planningh as clear benefits for patients approaching the end of their life, yet many of those attended by UK paramedics do not have this planning in place. To explore staff stakeholder views on the role of UK paramedics in advance care planning, including the use of the Gold Standards Framework Proactive Identification Guidance for screening and referral of patients. In-depth semi-structured telephone interviews with paramedics, general practitioners, Emergency Department and community doctors and nurses in the South West of England. Seventeen staff stakeholders participated. Four main themes were identified: a lack of advance care planning; variation across health conditions; a lack of joined-up care; poor-quality end of life conversations. Paramedic use of the Gold Standards Framework Proactive Identification Guidance to screen and refer patients for advance care planning was seen as feasible and acceptable, with perceived benefitssuch as identifying patients not accessing primary care, and the potential to reduce avoidable hospital admissions. UK paramedics are well-placed toscreen and refer patients for advance care planning. Further research is needed to explore how this type of intervention might be developed to fit into a community-centred approach aimed at improving advance care planning. [ABSTRACT FROM AUTHOR]

Background: Carers' end-of-life caregiving greatly benefits society but little is known about the monetary value of this care. Aim: Within an end-of-life cancer setting: (1) to assess the feasibility and content validity of a post-bereavement measure of hours of care; and (2) to obtain a monetary value of this informal care and identify variation in this value among sub-groups. Design and setting: A census based cross-sectional survey of all cancer deaths from a 2-week period in England collected detailed data on caregiving activity (10 caregiving tasks and the time spent on each). We descriptively analyse the information carers provided in 'other' tasks to inform content validity. We assigned a monetary value of caregiving via the proxy good method and examined variation in the value via regression analysis. Results: The majority of carers (89.9%) were able to complete the detailed questions about hours and tasks. Only 153 carers reported engaging in 'other' tasks. The monetary value of caregiving at end-of-life was £948.86 per week with social and emotional support and symptom management tasks representing the largest proportion of this monetary valuation. Time of recall did not substantially relate to variation in the monetary value, whereas there was a stronger association for the relationship between the carer and recipient, carer gender and recipient daily living restrictions. Conclusion: The monetary valuation we produce for carers' work is substantial, for example the weekly UK Carers' Allowance only amounts to 7% of our estimated value of £948.86 per week. Our research provides further information on subgroup variation, and a valid carer time instrument and method to inform economic evaluation and policy. [ABSTRACT FROM AUTHOR]

Background: Adults increasingly live and die with chronic progressive conditions into advanced age. Many live with multimorbidity and an uncertain illness trajectory with points of marked decline, loss of function and increased risk of end of life. Intermediate care units support mainly older adults in transition between hospital and home to regain function and anticipate and plan for end of life. This study examined the patient characteristics and the factors associated with mortality over 1 year post-admission to an intermediate care unit to inform priorities for care.Methods: A national cohort study of adults admitted to intermediate care units in England using linked individual-level Hospital Episode Statistics and death registration data. The main outcome was mortality within 1 year from admission. The cohort was examined as two groups with significant differences in mortality between main diagnosis of a non-cancer condition and cancer. Data analysis used Kaplan-Meier curves to explore mortality differences between the groups and a time-dependant Cox proportional hazards model to determine mortality risk factors.Results: The cohort comprised 76,704 adults with median age 81 years (IQR 70-88) admitted to 220 intermediate care units over 1 year in 2016. Overall, 28.0% died within 1 year post-admission. Mortality varied by the main diagnosis of cancer (total n = 3680, 70.8% died) and non-cancer condition (total n = 73,024, 25.8% died). Illness-related factors had the highest adjusted hazard ratios [aHRs]. At 0-28 days post-admission, risks were highest for non-cancer respiratory conditions (pneumonia (aHR 6.17 [95%CI 4.90-7.76]), chronic obstructive pulmonary disease (aHR 5.01 [95% CI 3.78-6.62]), dementia (aHR 5.07 [95% CI 3.80-6.77]) and liver disease (aHR 9.75 [95% CI 6.50-14.6]) compared with musculoskeletal disorders. In cancer, lung cancer showed largest risk (aHR 1.20 [95%CI 1.04-1.39]) compared with cancer 'other'. Risks increased with high multimorbidity for non-cancer (aHR 2.57 [95% CI 2.36-2.79]) and cancer (aHR 2.59 [95% CI 2.13-3.15]) (reference: lowest).Conclusions: One in four patients died within 1 year. Indicators for palliative care assessment are respiratory conditions, dementia, liver disease, cancer and rising multimorbidity. The traditional emphasis on rehabilitation and recovery in intermediate care units has changed with an ageing population and the need for greater integration of palliative care. [ABSTRACT FROM AUTHOR]

Background: Palliative care is insufficiently integrated in the continuum of care for older people. It is unclear to what extent healthcare policy for older people includes elements of palliative care and thus supports its integration. Aim: (1) To develop a reference framework for identifying palliative care contents in policy documents; (2) to determine inclusion of palliative care in public policy documents on healthcare for older people in 13 rapidly ageing countries. Design: Directed documentary analysis of public policy documents (legislation, policies/strategies, guidelines, white papers) on healthcare for older people. Using existing literature, we developed a reference framework and data extraction form assessing 10 criteria of palliative care inclusion. Country experts identified documents and extracted data. Setting: Austria, Belgium, Canada, Czech Republic, England, Japan, Mexico, Netherlands, New Zealand, Singapore, Slovenia, South Korea, Spain. Results: Of 139 identified documents, 50 met inclusion criteria. The most frequently addressed palliative care elements were coordination and continuity of care (12 countries), communication and care planning, care for family, and ethical and legal aspects (11 countries). Documents in 10 countries explicitly mentioned palliative care, nine addressed symptom management, eight mentioned end-of-life care, and five referred to existing palliative care strategies (out of nine that had them). Conclusions: Health care policies for older people need revising to include reference to end-of-life care and dying and ensure linkage to existing national or regional palliative care strategies. The strong policy focus on care coordination and continuity in policies for older people is an opportunity window for palliative care advocacy. [ABSTRACT FROM AUTHOR]

Background: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams. Methods: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically. Results: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services' effectiveness and value for money was highlighted. Conclusions: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service. [ABSTRACT FROM AUTHOR]

People requiring palliative care should have their needs met by services acting in accordance with their wishes. A hospice in the south of England provides such care via a 24/7 hospice at home service. This study aimed to establish how a nurse-led night service supported patients and family carers to remain at home and avoid hospital admissions. Semi-structured interviews were carried out with family carers (n=38) and hospice-at-home staff (n=9). Through night-time phone calls and visits, family carers felt supported by specialist hospice staff whereby only appropriate hospital admission was facilitated. Staff provided mediation between family carer and other services enabling more integrated care and support to remain at home. A hospice-at-home night service can prevent unnecessary hospital admissions and meet patient wishes through specialist care at home. [ABSTRACT FROM AUTHOR]

Background: High-quality, personalised palliative care should be available to all, but timely recognition of end of life may be a barrier to end-of-life care for older people.Aim: To investigate the timing of end-of-life recognition, palliative registration, and the recording of end-of-life preferences in primary care for people aged ≥75 years.Design and Setting: Retrospective cohort study using national primary care record data, covering 34% of GP practices in England.Method: ResearchOne data from electronic healthcare records (EHRs) of people aged ≥75 years who died in England between 1 January 2015 and 1 January 2016 were examined. Clinical codes relating to end-of-life recognition, palliative registration, and end-of-life preferences were extracted, and the number of months that elapsed between the code being entered and death taking place were calculated. The timing for each outcome and proportion of relevant EHRs were reported.Results: Death was recorded for a total of 13 149 people in ResearchOne data during the 1-year study window. Of those, 6303 (47.9%) records contained codes suggesting end of life had been recognised at a point in time prior to the month of death. Recognition occurred ≥12 months before death in 2248 (17.1%) records. In total, 1659 (12.6%) people were on the palliative care register and 457 (3.5%) were on the register for ≥12 months before death; 2987 (22.7%) records had a code for the patient's preferred place of care, and 1713 (13.0%) had a code for the preferred place of death. Where preferences for place of death were recorded, a care, nursing, or residential home (n = 813, 47.5%) and the individual's home (n = 752, 43.9%) were the most common.Conclusion: End-of-life recognition in primary care appears to occur near to death and for only a minority of people aged ≥75 years. The findings suggest that older people's deaths may not be anticipated by health professionals, compromising equitable access to palliative care. [ABSTRACT FROM AUTHOR]