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Background: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. Methods: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. Results: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. Conclusions: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings. [ABSTRACT FROM AUTHOR]

Background: The disproportionate effect of COVID-19 on long term care facility (LTCF) residents has highlighted the need for clear, consistent guidance on the management of pandemics in such settings. As research exploring the experiences of LTCFs during the pandemic and the implications of mass hospital discharge, restricting staff movement, and limiting visitation from relatives are emerging, an in-depth review of policies, guidance and recommendations issued during this time could facilitate wider understanding in this area. Aims: To identify policies, guidance, and recommendations related to LTCF staff and residents, in England issued by the government during the COVID-19 pandemic, developing a timeline of key events and synthesizing the policy aims, recommendations, implementation and intended outcomes. Method: A scoping review of publicly available policy documents, guidance, and recommendations related to COVID-19 in LTCFs in England, identified using systematic searches of UK government websites. The main aims, recommendations, implementation and intended outcomes reported in included documents were extracted. Data was analysed using thematic synthesis following a three-stage approach: coding the text, grouping codes into descriptive themes, and development of analytical themes. Results: Thirty-three key policy documents were included in the review. Six areas of recommendations were identified: infection prevention and control, hospital discharge, testing and vaccination, staffing, visitation and continuing routine care. Seven areas of implementation were identified: funding, collaborative working, monitoring and data collection, reducing workload, decision making and leadership, training and technology, and communication. Discussion: LTCFs remain complex settings, and it is imperative that lessons are learned from the experiences during COVID-19 to ensure that future pandemics are managed appropriately. This review has synthesized the policies issued during this time, however, the extent to which such guidance was communicated to LTCFs, and subsequently implemented, in addition to being effective, requires further research. In particular, understanding the secondary effects of such policies and how they can be introduced within the existing challenges inherent to adult social care, need addressing. [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: 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]

Background The predicted demographic changes internationally have implications for the nature of care that older people receive and place of care as they age. Healthcare policy now promotes the implementation of end-of-life care interventions to improve care delivery within different settings. The Gold Standards Framework in Care Homes (GSFCH) programme is one end-of-life care initiative recommended by the English Department of Health. Only a small number of care homes that start the programme complete it, which raises questions about the implementation process. Aim To identify the type, role, impact and cost of facilitation when implementing the GSFCH programme into nursing care home practice. Design A mixed-methods study. Setting Nursing care homes in south-east England. Participants Staff from 38 nursing care homes undertaking the GSFCH programme. Staff in 24 nursing care homes received high facilitation. Of those, 12 also received action learning. The remaining 14 nursing care homes received usual local facilitation of the GSFCH programme. Methods Study data were collected from staff employed within nursing care homes (home managers and GSFCH coordinators) and external facilitators associated with the homes. Data collection included interviews, surveys and facilitator activity logs. Following separate quantitative (descriptive statistics) and qualitative (template) data analysis the data sets were integrated by ‘following a thread’. This paper reports study data in relation to facilitation. Results Three facilitation approaches were provided to nursing home staff when implementing the GSFCH programme: ‘fitting it in’ facilitation; ‘as requested’ facilitation; and ‘being present’ facilitation. ‘Being present’ facilitation most effectively enabled the completion of the programme, through to accreditation. However, it was not sufficient to just be present. Without mastery and commitment, from all participants, including the external facilitator, learning and initiation of change failed to occur. Implementation of the programme required an external facilitator who could mediate multi-layered learning at an individual, organisational and appreciative system level. The cost savings in the study outweighed the cost of providing a ‘being present’ approach to facilitation. Conclusions Different types of facilitation are offered to support the implementation of end-of-life care initiatives. However, in this study ‘being present’ facilitation, when supported by multi-layered learning, was the only approach that initiated the change required. [ABSTRACT FROM AUTHOR]

Background: Effective integration between hospices, palliative care services and other local health care services to support patients with palliative care needs is an important international priority. A previous model suggests that integration involves a cumulative stepped process of engagement with other organisations labelled as 'support, supplant or supplement', but the extent to which this model currently applies in the United Kingdom is unknown. We aimed to investigate accounts of hospice integration with local health care providers, using the framework provided by the model, to determine how service users and healthcare professionals perceived palliative care services and the extent of integration experienced. Methods: Longitudinal organisational case study methods were employed using qualitative serial interviews (interval 3 months) with patients and family carers focusing on how services responded to their needs; and group interviews with health professionals. Data were audio-recorded, transcribed verbatim, and analysed by qualitative content analysis and combined across data sources. Results: The study focused on four hospices in northern England, including 34 patients (diagnosis: 17 cancer, 10 COPD, 7 heart failure), 65% female, mean age 66 (range 44-89), 13 family carers of these patients (48% partners), and 23 health care professionals. While some care fell short of expectations, all patients reported high levels of satisfaction and valued continuity of care and efficient information sharing. All hospices supported and supplemented local providers, with three hospices also supplanting local provision by providing in-patient facilities. Conclusion: UK hospices predominantly operate in ways that support and supplement other providers. In addition, some also supplant local services, taking over direct responsibility and funding in-patient care. They all contributed to integration with local services, with greater blurring of boundaries than defined by the original model. Integrated care offers the necessary flexibility to respond to changes in patient needs, however, constraints from funding drivers and a lack of clear responsibilities in the UK can result in shortfalls in optimal service delivery. Integrating hospice care with local healthcare services can help to address demographic changes, predominantly more frail older people, and disease factors, including the needs of those with non-malignant conditions. This model, tested in the UK, could serve as an example for other countries. [ABSTRACT FROM AUTHOR]

Background: Compassionate support at the end of life should not be the responsibility of health and social care professionals alone and requires a response from the wider community. Volunteers, as community members, are a critical part of many end-of-life care services. The impact of their services on important outcomes such as quality of life is currently poorly understood. The purpose of this study is to evaluate a series of social action initiatives which use volunteers to deliver befriending services to people anticipated to be in their last year of life. The aim is to determine if receiving care from a social action volunteer befriending service plus usual care significantly improves quality of life in the last year of life. Methods/design: The research questions will be addressed through a wait-list randomised controlled trial (WLRCT) and qualitative case study evaluation across 12 sites in England. Participants will be randomly allocated to either receive the social action volunteer befriending service straight away or receive the intervention after a four week wait (wait-list arm). The impact of the intervention on end-of-life experience (quality of life as primary outcome, loneliness, social support) will be measured. Repeated assessments will be carried out at baseline and weeks 4 and 8 for the intervention arm and weeks 4, 8 and 12 for the wait-list arm. For selected sites case study evaluation will include interviews, observation and documentary analysis to understand the mechanisms underpinning any found impact. Discussion: This study will address the need to both provide services which use social action models to support end-of-life care in community settings, and to robustly evaluate these models to determine if they influence the experience of end-of-life care. Such services could work to reduce isolation, help meet emotional needs and maintain a sense of connectedness to the community. ISRCTN 12929812 Registered 20.5.15 [ABSTRACT FROM AUTHOR]

The authors examine the mistakes committed in the implementation of the Liverpool Care Pathway (LCP) for the Dying Patient in England. They present the findings of a review commissioned by the British government into the use of LCP. They also mention several lessons learned from the demise of the LCP and recommend ways to improve care of the dying.

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]

Background: People with advanced dementia who live and die in nursing homes experience variable quality of life, care and dying. There is a need to identify appropriate, cost-effective interventions that facilitate high-quality end-of-life care provision., Objectives: To establish the feasibility and acceptability to staff and family of conducting a cluster randomised controlled trial of the Namaste Care intervention for people with advanced dementia in nursing homes., Design: The study had three phases: (1) realist review and (2) intervention refinement to inform the design of (3) a feasibility cluster randomised controlled trial with a process evaluation and economic analysis. Clusters (nursing homes) were randomised in a 3 : 1 ratio to intervention or control (usual care). The nature of the intervention meant that blinding was not possible., Setting: Nursing homes in England providing care for people with dementia., Participants: Residents with advanced dementia (assessed as having a Functional Assessment Staging Test score of 6 or 7), their informal carers and nursing home staff., Intervention: Namaste Care is a complex group intervention that provides structured personalised care in a dedicated space, focusing on enhancements to the physical environment, comfort management and sensory engagement., Main Outcome Measures: The two contender primary outcome measures were Comfort Assessment in Dying - End of Life Care in Dementia for quality of dying (dementia) and Quality of Life in Late Stage Dementia for quality of life. The secondary outcomes were as follows: person with dementia, sleep/activity (actigraphy), neuropsychiatric symptoms, agitation and pain; informal carers, satisfaction with care at the end of life; staff members, person-centred care assessment, satisfaction with care at the end of life and readiness for change; and other data - health economic outcomes, medication/service use and intervention activity., Results: Phase 1 (realist review; 86 papers) identified that a key intervention component was the activities enabling the development of moments of connection. In phase 2, refinement of the intervention enabled the production of a user-friendly 16-page A4 booklet. In phase 3, eight nursing homes were recruited. Two homes withdrew before the intervention commenced; four intervention and two control homes completed the study. Residents with advanced dementia ( n  = 32) were recruited in intervention ( n  = 18) and control ( n  = 14) homes. Informal carers (total, n  = 12: intervention, n  = 5; control, n  = 7) and 97 staff from eight sites (intervention, n  = 75; control, n  = 22) were recruited over a 6-month period. Recruitment is feasible. Completion rates of the primary outcome questionnaires were high at baseline (100%) and at 4 weeks (96.8%). The Quality of Life in Late Stage Dementia was more responsive to change over 24 weeks. Even where economic data were missing, these could be collected in a full trial. The intervention was acceptable; the dose varied depending on the staffing and physical environment of each care home. Staff and informal carers reported changes for the person with dementia in two ways: increased social engagement and greater calm. No adverse events related to the intervention were reported., Conclusions: A subsequent definitive trial is feasible if there are amendments to the recruitment process, outcome measure choice and intervention specification., Future Work: In a full trial, consideration is needed of the appropriate outcome measure that is sensitive to different participant responses, and of clear implementation principles for this person-centred intervention in a nursing home context., Trial Registration: Current Controlled Trials ISRCTN14948133., Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment ; Vol. 24, No. 6. See the NIHR Journals Library website for further project information., Competing Interests: Joanna Coast reports grants from the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) programme during the conduct of the study; and she led the development of the ICECAP (ICEpop CAPability) instruments. Claire Goodman is a NIHR Senior Investigator. Ben Hardwick reports grants from the NIHR HTA programme during the conduct of the study. Catherine Walshe reports that she was a member of the NIHR Health Services and Delivery Research programme Researcher Led Committee during the conduct of the study.

Background: Complex interventions are common in palliative and end-of-life care. Mixed methods approaches sit well within the multiphase model of complex intervention development and evaluation. Generic mixed methods guidance is useful but additional challenges in the research design and operationalization within palliative and end-of-life care may have an impact on the use of mixed methods., Objective: The objective of the study was to develop guidance on the best methods for combining quantitative and qualitative methods for health and social care intervention development and evaluation in palliative and end-of-life care., Methods: A one-day workshop was held where experts participated in facilitated groups using Transparent Expert Consultation to generate items for potential recommendations. Agreement and consensus were then sought on nine draft recommendations (DRs) in a follow-up exercise., Results: There was at least moderate agreement with most of the DRs, although consensus was low. Strongest agreement was with DR1 (usefulness of mixed methods to palliative and end-of-life care) and DR5 (importance of attention to respondent burden), and least agreement was with DR2 (use of theoretical perspectives) and DR6 (therapeutic effects of research interviews). Narrative comments enabled recommendation refinement. Two fully endorsed, five partially endorsed, and two refined DRs emerged. The relationship of these nine to six key challenges of palliative and end-of-life care research was analyzed., Conclusions: There is a need for further discussion of these recommendations and their contribution to methodology. The recommendations should be considered when designing and operationalizing mixed methods studies of complex interventions in palliative care, and because they may have wider relevance, should be considered for other applications.