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Background Adult patients admitted to intensive care units in the terminal phase experience high symptom burden, increased costs, and diminished quality of dying. There is limited literature on palliative care engagement in ICU, especially in lower-middle-income countries. This study explores a strategy to enhance palliative care engagement in ICU through a stakeholder participatory approach. Methods Theory of Change approach was used to develop a hypothetical causal pathway for palliative care integration into ICUs in India. Four facilitated workshops and fifteen research team meetings were conducted virtually over three months. Thirteen stakeholders were purposively chosen, and three facilitators conducted the workshops. Data included workshop discussion transcripts, online chat box comments, and team meeting minutes. These were collected, analysed and represented as theory of change map. Results The desired impact of palliative care integration was good death. Potential long-term outcomes identified were fewer deaths in ICUs, discharge against medical advice, and inappropriate admissions; increased referrals to palliative care; and improved patient and family satisfaction. Twelve preconditions were identified, and eleven key interventions were developed. Five overarching assumptions related to contextual factors influencing the outcomes of interventions. Conclusion Theory of change framework facilitated the identification of proposed mechanisms and interventions underpinning palliative care integration in ICUs.

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

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.

Purpose Death is common in intensive care units, and integrating palliative care enhances outcomes. Most research has been conducted in high-income countries. The aim is to understand what is known about the type and topics of research on the provision of palliative care within intensive care units in low- and middle-income countries Materials and methods Scoping review with nine databases systematically searched for literature published in English on palliative care in intensive care units in low- and middle- income settings (01/01/1990 to 31/05/2021). Two reviewers independently checked search results and extracted textual data, which were analyzed and represented as themes. Results Thirty papers reported 19 empirical studies, two clinical case reports and six discussion papers. Papers originated from Asia and Africa, primarily using observational designs and qualitative approaches, with no trials or other robust evaluative or comparative studies. No studies directly sought data from patients or families. Five areas of research focus were identified: withholding and withdrawing treatment; professional knowledge and skills; patient and family views; culture and context; and costs of care. Conclusions Palliative care in intensive care units in low-and middle-income countries is understudied. Research focused on the specific needs of intensive care in low- and middle-income countries is required to ensure optimal patient outcomes.

Background Advance care planning in nursing homes is important to ensure the wishes and preferences of residents are recorded, especially during the COVID-19 pandemic. However, care staff and family members frequently report feeling unprepared for these conversations. More resources are needed to support them with these necessary discussions. This research aimed to develop, implement and evaluate a website intervention for care staff and family members to provide training and information about advance care planning during COVID-19. Methods The research was a primarily qualitative case study design, comprising multiple UK nursing home cases. Data collection included semi-structured interviews with care staff and family members which were coded and analysed thematically. A narrative synthesis was produced for each case, culminating in a thematic cross-case analysis of the total findings. Theoretical propositions were refined throughout the research. Results Eight nursing homes took part in the study, involving 35 care staff and 19 family members. Findings were reported according to the RE-AIM framework which identified the reach, effectiveness, adoption, implementation and maintenance of the intervention. Themes included: website content that was well received; suggestions for improvement; implementation barriers and facilitators; examples of organisational and personal impact. Conclusions Four theoretical propositions relating to advance care planning in nursing homes are presented, relating to: training and information needs, accessibility, context, and encouraging conversations. Implications for practice and training include an awareness of diverse learning styles, re-enforcing the right to be involved in advance care planning and encouraging opportunities for facilitated discussion.

Background:: Missing data can introduce bias and reduce the power, precision and generalisability of study findings. Guidelines on how to address missing data are limited in scope and detail, and poorly implemented. Aim:: To develop guidelines on how best to (i) reduce, (ii) handle and (iii) report missing data in palliative care clinical trials. Design:: Modified nominal group technique. Setting/participants:: Patient and public research partners, palliative care clinicians, trialists, methodologists and statisticians attended a 1-day workshop, following which a multi-stakeholder development group drafted the guidelines. Results:: Seven main recommendations for reducing missing data, nine for handling missing data and twelve for reporting missing data were developed. The top five recommendations were: (i) train all research staff on missing data, (ii) prepare for missing data at the trial design stage, (iii) address missing data in the statistical analysis plan, (iv) collect the reasons for missing data and (v) report descriptive statistics comparing the baseline characteristics of those with missing and observed data. Reducing missing data, preparing for missing data and understanding the reasons for missing data were greater priorities for stakeholders than how to deal with missing data once they had occurred. Conclusion:: Comprehensive guidelines on how to address missing data were developed by stakeholders involved in palliative care trials. Implementation of the guidelines will require endorsement of research funders and research journals.

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

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

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

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.

Objective We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative’s end-of-life care. Methods We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. Results Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country’s QPL. One question was included in all QPLs: “Can you tell me more about palliative care in dementia?”. Conclusion Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. Practice implications Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs’ use.

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators. Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion. Results: Patients with a good performance status were underrepresented in the intervention group (preceived systemic cancer treatment; 79% versus 89%, respectively (pcountry, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed (p=0.3). Conclusions: Lower care costs as observed in the intervention group were mainly related to patients’ characteristics. A definite impact of the intervention itself could not be established.

Background: Although a significant proportion of children with cancer need palliative care, few are referred or referred late, with oncologists and haematologists gatekeeping the referral process. We aimed to explore the facilitators and barriers to palliative care referral. Methods: Twenty-two paediatric oncologists and haematologists were purposively recruited and interviewed. Data were analysed using reflexive thematic analysis. Findings were interpreted using the critical realist paradigm. Results: Four themes were generated. 1) Oncologists expressed concern about the competency of palliative care teams. Palliative care often symbolised therapeutic failure and abandonment, which hindered referral. Trustworthy palliative care providers had clinical competence, benevolence, and knowledge of oncology and paediatrics. 2) Making a palliative care referral was associated with stigma, navigating illness-related factors, negative family attitudes and limited resources, impeding palliative care referral. 3) There were benefits to palliative care referral, including symptom management and psychosocial support for patients. However, some could see interactions with the palliative care team as interference hindering future referrals. 4) Suggested strategies for developing an integrated palliative care model include evident collaboration between oncology and palliative care, early referral, rebranding palliative care as symptom control and an accessible, knowledgeable, and proactive palliative care team. Conclusion: Presuppositions about palliative care, the task of making a referral, and its cost-benefits influenced referral behaviour. Early association with an efficient rebranded palliative care team might enhance integration.

HealthCall is a digital health initiative that aims to reduce emergency department attendances by upskilling care home staff to use app-based technology whereby residents with new clinical presentations’ observations are recorded electronically using a structured SBAR approach. Information is fed to a Single Point of Access where clinical staff triage the referrals. This study evaluated the effectiveness of the HealthCall technology across the North East of England to safely reduce ED referrals and attendance. The study included 122 care homes covering the study period 2018–2021. Routinely collected secondary care data from County Durham and Darlington NHS Foundation Trust was linked with clinical data from HealthCall. We describe the change in ED attendances over the period before, during and after the introduction of the technology to the care homes. We fitted Poisson generalised linear mixture models to monthly counts of emergency attendances. Covariates were included to adjust for seasonality and external factors such as COVID-19, and hierarchical random intercepts were included to account for both individual and care home variability. The impact of HealthCall technology usage on residents’ expected number of attendances is tested as a ‘step’ change at intervention and a ‘slope’ change post intervention. We identified 8,702 care home residents through linkage between the secondary care and HealthCall datasets. Preliminary results suggest the use of HealthCall reduces expected monthly ED attendances for care home residents by 16% (95%CI 5 to 25, p-value This study finds that the implementation of the HealthCall technology reduces the expected number of monthly emergency department attendances for residents. The technology allows for ongoing monitoring of resident health alongside providing more convenient and timely access to clinical advice that promotes more appropriate and resident-focussed decision leading to fewer unnecessary ED attendances.

Introduction Preserving patient dignity is an overarching tenet in palliative care. Though patient dignity and its multiple facets have been studied in Western societies, interpretations of dignity may change depending on the context influenced by socio-cultural, and political circumstances, ensuing in different meanings and implications. Aim To explore the interpretations of the concept of dignity perceived by patients with palliative care needs and family caregivers within the Lebanese context. Method 1. An integrative review to explore and synthesise evidence on the understanding of dignity in the Middle Eastern palliative care context. 2. A qualitative interview study with fourteen patients with palliative needs and fifteen family caregivers to understand how dignity is interpreted and preserved in illness. The data were analysed inductively using reflexive thematic analysis. The findings from the two groups of participants were compared against each other and with the Chochinov Model of dignity. Findings Most of the findings from the integrative review came from Iran. Seven themes were developed: Maintaining privacy and secrecy; Gentle communication to preserve hope for wellbeing; Financial stability and accessibility of medical supplies; Family Support; Physical Fitness; Reliable health care, and Social justice that endorses equal care to all. Patients’ and family caregivers’ interviews revealed four common themes about maintaining dignity: a) The importance of faith b) The need to preserve physical, social, and mental wellbeing c) The central role of family d) Compassionate health care. These findings were similar to the themes synthesised from the integrative review highlighting the impact of context in understanding dignity. When comparing the findings to the Chochinov Model of Dignity, preserving outer physical appearance, equitable and affordable care and health resources were two new subthemes that surfaced as necessary for maintaining dignity during ill

Background: The opportunity for people with intellectual disability to live a long and healthy life is impacted by the conditions into which they are born, grow up and live. This research provides insight into health and non-medical factors that influence health, in a comparative population of people with and without intellectual disability. Aim: To examine the health, objective and subjective socioeconomic status of adults with and without intellectual disability in Jersey. It explores the prevalence of health problems, polypharmacy and drug-drug interactions and the relationships with objective and subjective socioeconomic status on the health of people with an intellectual disability. Methods: An administrative population of 217 adults with, and a random stratified sample of 2,350 adults without, intellectual disability participated in this study. Proxy respondents were used where people did not have capacity to consent. The prevalence, patterns and relationships with health problems, polypharmacy, drug-drug interactions and socioeconomic status are described. Associations of these characteristics were analysed using univariate and multivariate analysis. Findings: People with intellectual disability have poorer health than the general population which starts earlier in life. They are especially vulnerable to the negative effects of taking multiple medications. Adults with intellectual disability also occupy lower socioeconomic status and report lower levels of subjective socioeconomic status and poorer self-rated health than the general population. Higher subjective socioeconomic status and younger age were significant predictors of better self-rated health reported by the proxy intellectual disability group only, while being employed was associated with better health for all populations. Conclusion: Significant efforts are needed to reduce the non-medical factors that influence the health inequalities experienced by adults with intellectual disability.

Background Permissive legislation about assisted dying is increasing internationally. While patients’ and health care professionals’ rights, duties, and needs are considered in guidelines, the experience of patients’ families remains under-researched. Aim To investigate the experience of family members with patients, health care professionals and right to die associations when the patient is in the process of seeking assisted suicide. Methods (i) A systematic literature review was performed about families’ experiences with a family member who died with assisted dying, in jurisdictions where it is it is legally permissible using thematic synthesis. (ii) An empirical qualitative interview study to investigate Swiss families’ reflections of their experiences when a family member is considering assisted suicide analysed deductively framework analysis. A secondary data analysis was performed using framework analysis to depict Swiss family members’ reflections on their interactions with health care professionals and right to die associations during the time their family members were considering assisted suicide. (iii) An empirical qualitative interview study with palliative care physicians to explore Swiss palliative care physicians’ accounts of interactions with patients and their families when they are considering assisted suicide analysed inductively with thematic analysis. Results The literature review (19 articles) showed that families across all jurisdictions are involved in assisted suicide decision and enactment, where open communication is maintained, and that family needs in this context are under-researched. The interview studies (28 relatives and 23 physicians) showed that Swiss family carers are often involved in the preparation of assisted suicide along with patients, irrespective of their personal values. Swiss palliative care physicians struggle to reconcile their ethical principles with the patients’ wishes to exercise their autonomy, and deplore the lack

ObjectivesTo describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines.MethodsWe surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical variables were expressed as counts and percentages. Content analysis explored free text responses about symptom management in COVID-19. Medicines were classified using British National Formulary categories. Perceptions on effectiveness of medicines were grouped into five categories; effective, some, limited or unclear effectiveness, no effect.Results458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. 358 services had managed patients with confirmed or suspected COVID-19. 289 services had protocols for symptom management in COVID-19. Services tended to prescribe medicines for symptom control comparable to medicines used in people without COVID-19; mainly opioids and benzodiazepines for breathlessness, benzodiazepines and antipsychotics for agitation, opioids and cough linctus for cough, paracetamol and non-steroidal anti-inflammatory drugs for fever, and opioids and paracetamol for pain. Medicines were considered to be mostly effective but varied by patient’s condition, route of administration and dose.ConclusionsServices were largely consistent in prescribing for symptom management in people dying with COVID-19. Medicines used prior to COVID-19 were mostly considered effective in controlling common symptoms.

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.

Background:: Missing data can introduce bias and reduce the power, precision and generalisability of study findings. Guidelines on how to address missing data are limited in scope and detail, and poorly implemented. Aim:: To develop guidelines on how best to (i) reduce, (ii) handle and (iii) report missing data in palliative care clinical trials. Design:: Modified nominal group technique. Setting/participants:: Patient and public research partners, palliative care clinicians, trialists, methodologists and statisticians attended a 1-day workshop, following which a multi-stakeholder development group drafted the guidelines. Results:: Seven main recommendations for reducing missing data, nine for handling missing data and twelve for reporting missing data were developed. The top five recommendations were: (i) train all research staff on missing data, (ii) prepare for missing data at the trial design stage, (iii) address missing data in the statistical analysis plan, (iv) collect the reasons for missing data and (v) report descriptive statistics comparing the baseline characteristics of those with missing and observed data. Reducing missing data, preparing for missing data and understanding the reasons for missing data were greater priorities for stakeholders than how to deal with missing data once they had occurred. Conclusion:: Comprehensive guidelines on how to address missing data were developed by stakeholders involved in palliative care trials. Implementation of the guidelines will require endorsement of research funders and research journals.

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

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

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.

Purpose Death is common in intensive care units, and integrating palliative care enhances outcomes. Most research has been conducted in high-income countries. The aim is to understand what is known about the type and topics of research on the provision of palliative care within intensive care units in low- and middle-income countries Materials and methods Scoping review with nine databases systematically searched for literature published in English on palliative care in intensive care units in low- and middle- income settings (01/01/1990 to 31/05/2021). Two reviewers independently checked search results and extracted textual data, which were analyzed and represented as themes. Results Thirty papers reported 19 empirical studies, two clinical case reports and six discussion papers. Papers originated from Asia and Africa, primarily using observational designs and qualitative approaches, with no trials or other robust evaluative or comparative studies. No studies directly sought data from patients or families. Five areas of research focus were identified: withholding and withdrawing treatment; professional knowledge and skills; patient and family views; culture and context; and costs of care. Conclusions Palliative care in intensive care units in low-and middle-income countries is understudied. Research focused on the specific needs of intensive care in low- and middle-income countries is required to ensure optimal patient outcomes.

Introduction: Patients with heart failure have significant palliative care needs but few receive palliative care. Guidance is lacking on how to integrate palliative care into standard heart failure care. Palliative care interventions often lack an underpinning theory and understanding of their key components and how they interact to achieve an impact. Understanding how and why an intervention works enhances implementation. Aim: Develop and refine a theory-based, complex palliative care intervention for patients with heart failure and their family carers. Methods: Intervention development using the Medical Research Council framework for developing complex interventions and Theory of Change approach. A systematic review of palliative care needs-assessment and measurement tools in heart failure was conducted. Next, a preliminary intervention and underpinning theory that explains its causal mechanism were co-designed in Theory of Change workshops with stakeholders from a hospital heart failure multidisciplinary team. Subsequently, patient, family carer, and professional caregiver interviews on integrated palliative care were analysed. Findings from the analysis were discussed with stakeholders to refine the intervention and underlying theory and co-develop a feasibility study protocol. Results: NAT:PD-HF was identified as the most appropriate palliative care needs-assessment tool in the review and after discussion with stakeholders. At the Theory of Change workshops, the agreed intervention impact was to meet the holistic palliative care needs of patients and families. Three long-term outcomes were identified: reduced unnecessary hospitalisations, symptom burden, and caregiving burden. To achieve these outcomes, many preconditions, contextual conditions, and intervention activities (education, collaboration, and completing NAT:PD-HF) must exist. Conclusion: The study provided novel insights into complex intervention development and the potential mechanism of integrating