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Background: Identifying and assessing vulnerability and resilience through reflexive reactions and conscious coping responses to life-limiting illness is an important, but rarely assessed, component of care. The novel Attitude to Health Change scales can contribute to this, but require fuller development and testing. Objectives: Exploring face validity of the Attitude to Health Change Scales (patient and carer versions) from the perspective of specialist palliative care professionals. Design: A two-stage study: (i) focus groups to explore experiences of scale use and wording, (ii) online survey to gather preferences on possible scale modifications. Focus group data were analysed using framework analysis. A hermeneutic approach was used to modify the wording of the scales, ensuring adherence to the underpinning concepts used in the design of the scale, congruence with the palliative care context, and simplicity of language. Setting/Subjects: Specialist palliative care practitioners in UK hospice settings who had been involved in pilot use of the scales in clinical practice. Results: 21 practitioners participated in 3 focus groups across 3 UK hospice sites, 9 of those participants responded to the survey. Four themes are presented: the importance and distinctiveness of the scales; maintaining conceptual integrity; ensuring a palliative care focus; and ensuring linguistic clarity. New iterations of the patient and carer versions of the Attitude to Health Change scales were developed. Conclusion: The scales appear to reflect the intended theoretical constructs, and are worded in a way which is congruent with the experience of specialist palliative care practitioners.

Objectives: It is common for relatives to feel uncertain about what to expect at the bedside of a dying loved one. The Centre for the Art of Dying Well together with clinical, academic and communications experts created a ?Deathbed Etiquette? guide offering information and reassurance to relatives. This study explores the views of practitioners with experience in end-of-life care on the guide and how it might be used. Methods: Three online focus groups and nine individual interviews were conducted with a purposive sample of 21 participants involved in end-of-life care. Participants were recruited through hospices and social media. Data were analysed using thematic analysis. Results: Discussions highlighted the importance of effective communication that normalises experiences of being by the bedside of a dying loved one. Tensions around the use of the words ?death? and ?dying? were identified. Most participants also expressed reservations about the title, with the word ?deathbed? found to be old-fashioned and the word ?etiquette? not capturing the varied experiences of being by the bedside. Overall, however, participants agreed that the guide is useful for ?mythbusting? death and dying. Conclusion: There is a need for communication resources that can support practitioners in having honest and compassionate conversations with relatives in end-of-life care. The ?Deathbed Etiquette? guide is a promising resource to support relatives and healthcare practitioners by providing them with suitable information and helpful phrases. More research is needed on how to implement the guide in healthcare settings.

Background: Trial participant recruitment is an interactional process between health care professionals, patients and carers. Little is known about how clinicians carry out this role in palliative care trials and the reasons why they do or do not recruit participants. Aims: To explore how clinicians recruit to palliative care trials, why they choose to implement particular recruitment strategies, and the factors that influence their choices. Design: A qualitative multiple case study of three UK palliative care trials. Data collection included interviews and study documentation. Analysis involved developing and refining theoretical propositions, guided by the ‘6Ps’ of the ‘Social Marketing Mix Framework’ as an a priori framework (identifying participants, product, price, place, promotion and working with partners). Framework Analysis guided within and then cross-case analysis. Settings/participants: Study investigators and research staff (n = 3, 9, 7) from trial coordinating centres and recruitment sites (hospice and hospital). Results: Cross-case analysis suggests the ‘Social Marketing Mix Framework’ is useful for understanding recruitment processes but wider contextual issues need to be incorporated. These include the ‘emotional labour’ of diagnosing dying and communicating palliative and end-of-life care to potential participants and how the recruitment process is influenced by the power relationships and hierarchies that exist among professional groups. These factors can lead to and support paternalistic practices. Conclusions: Those planning trials need to ensure that trial recruiters, depending on their experience and trial characteristics, have access to training and support to address the ‘emotional labour’ of recruitment. The type of training required requires further research.

Objectives: It is common for relatives to feel uncertain about what to expect at the bedside of a dying loved one. The Centre for the Art of Dying Well together with clinical, academic and communications experts created a ?Deathbed Etiquette? guide offering information and reassurance to relatives. This study explores the views of practitioners with experience in end-of-life care on the guide and how it might be used. Methods: Three online focus groups and nine individual interviews were conducted with a purposive sample of 21 participants involved in end-of-life care. Participants were recruited through hospices and social media. Data were analysed using thematic analysis. Results: Discussions highlighted the importance of effective communication that normalises experiences of being by the bedside of a dying loved one. Tensions around the use of the words ?death? and ?dying? were identified. Most participants also expressed reservations about the title, with the word ?deathbed? found to be old-fashioned and the word ?etiquette? not capturing the varied experiences of being by the bedside. Overall, however, participants agreed that the guide is useful for ?mythbusting? death and dying. Conclusion: There is a need for communication resources that can support practitioners in having honest and compassionate conversations with relatives in end-of-life care. The ?Deathbed Etiquette? guide is a promising resource to support relatives and healthcare practitioners by providing them with suitable information and helpful phrases. More research is needed on how to implement the guide in healthcare settings.

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 (p< 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p< 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, 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: 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 (p< 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital (p = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively (p< 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients (p = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, 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: 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.

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.

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.

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.

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.

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.

BACKGROUND: The ACTION trial evaluated the effect of a modified version of the Respecting Choices´ advance care planning programme in patients with advanced cancer in six European countries. For this purpose, an advance directive acceptable for all six ACTION countries to be used for documenting the wishes and preferences of patients and as a communication tool between patients, their caregivers and healthcare staff, was needed.AIM: To describe the development of a multinational cancer specific advance directive, the ´My Preferences form´, which was first based on the 2005 Wisconsin 'Physician Orders of Life Sustaining Treatment´ Form, to be used within the ACTION trial.METHODS: Framework analysis of all textual data produced by members of the international project team during the development of the ACTION advance directives (e.g. drafts, emails, meeting minutes…).SETTING/PARTICIPANTS: ACTION consortium members (N = 28) with input from clinicians from participating hospitals (N = 13) and ´facilitators´ (N = 8) who were going to deliver the intervention.RESULTS: Ten versions of the ACTION advance directive, the ´My Preferences form´, were developed and circulated within the ACTION consortium. Extensive modifications took place; removal, addition, modification of themes and modification of clinical to lay terminology. The result was a thematically comprehensive advance directive to be used as a communication tool across the six European countries within the ACTION trial.CONCLUSION: This article shows the complex task of developing an advance directive suitable for cancer patients from six European countries; a process which required the resolution of several cross cultural differences in law, ethics, philosophy and practice. Our hope is that this paper can contribute to a deeper conceptual understanding of advance directives, their role in supporting decision making among patients approaching the end of life and be an inspiration