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Chronic breathlessness, a persistent and disabling symptom despite optimal treatment of underlying causes, is a frightening symptom with serious and widespread impact on patients and their carers. Clinical guidelines support the use of morphine for the relief of chronic breathlessness in common long-term conditions, but questions remain around clinical effectiveness, safety and longer term (>7 days) administration. This trial will evaluate the effectiveness of low-dose oral modified-release morphine in chronic breathlessness. This is a multicentre, parallel group, double-blind, randomised, placebo-controlled trial. Participants (n=158) will be opioid-naïve with chronic breathlessness due to heart or lung disease, cancer or post-coronavirus disease 2019. Participants will be randomised 1:1 to 5 mg oral modified-release morphine/placebo twice daily and docusate/placebo 100 mg twice daily for 56 days. Non-responders at Day 7 will dose escalate to 10 mg morphine/placebo twice daily at Day 15. The primary end-point (Day 28) measure will be worst breathlessness severity (previous 24 h). Secondary outcome measures include worst cough, distress, pain, functional status, physical activity, quality of life, and early identification and management of morphine-related side-effects. At Day 56, participants may opt to take open-label, oral modified-release morphine as part of usual care and complete quarterly breathlessness and toxicity questionnaires. The study is powered to be able to reject the null hypothesis and an embedded normalisation process theory-informed qualitative substudy will explore the adoption of morphine as a first-line pharmacological treatment for chronic breathlessness in clinical practice if effective.

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.

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.

OBJECTIVE: To develop comprehensive guidance that captures international impacts, causes and solutions related to emergency department (ED) crowding and access block. METHODS: Emergency physicians representing 15 countries from all International Federation of Emergency Medicine (IFEM) regions composed the Task Force. Monthly meetings were held via video-conferencing software to achieve consensus for report content. The report was submitted and approved by the IFEM Board on June 1, 2020. RESULTS: A total of 14 topic dossiers, each relating to an aspect of ED crowding, were researched and completed collaboratively by members of the Task Force. CONCLUSIONS: The IFEM report is a comprehensive document intended to be used in whole or by section to inform and address aspects of ED crowding and access block. Overall, ED crowding is a multifactorial issue requiring systems-wide solutions applied at local, regional, and national levels. Access block is the predominant contributor of ED crowding in most parts of the world.

OBJECTIVE: To develop comprehensive guidance that captures international impacts, causes, and solutions related to ED crowding and access block. METHODS: Emergency physicians representing 15 countries from all the International Federation for Emergency Medicine (IFEM) regions composed the task force. Monthly meetings were held via video-conferencing software to achieve consensus for report content. The report was submitted and approved by the IFEM Board on June 1, 2020. RESULTS: A total of 14 topic dossiers, each relating to an aspect of ED crowding, were researched and completed collaboratively by members of the task force. CONCLUSIONS: The IFEM report is a comprehensive document intended to be used in whole or by section to inform and address aspects of ED crowding and access block. Overall, ED crowding is a multifactorial issue requiring systems-wide solutions applied at local, regional, and national levels. Access block is the predominant contributor of ED crowding in most parts of the world.

The COVID-19 pandemic has produced significant changes in emergency medicine patient volumes, clinical practice, and has accelerated a number of systems-level developments. Many of these changes produced efficiencies in emergency care systems and contributed to a reduction in crowding and access block. In this paper, we explore these changes, analyse their risks and benefits and examine their sustainability for the future to the extent that they may combat crowding. We also examine the necessity of a system-wide approach in addressing ED crowding and access block.

Objectives: European populations are ageing, but data on the associated end-of-life care needs are scarce. This study aimed to analyse population, mortality and place of death (PoD) trends in Germany since 1950, and to project mortality by PoD until 2050. Study design and methods: Secondary analysis of national statistics on population, mortality and PoD by age and gender. Future numbers and proportions of deaths by PoD - hospital deaths (HDs) and non-hospital deaths (NHDs) - were based on recent trends (2005-2009). Linear models accounted for the effect of age and gender. Results: The German population increased by 19.0% between 1950 and 2002, and has remained relatively stable ever since. However, it is expected that it will decrease (15.4%) from 2009 to 2050 (from 81.8 to 69.4 million). The annual number of deaths has shown an increasing trend, except for a decrease in 1975-2004. A 26.0% increase is expected from 2009 to 2050 (854,544 to 1,077,000 deaths). Older people (age >= 75 years) will account for 87.8% of all deaths in 2050 (64.4% in 2009). The proportion of HDs was stable, with an annual mean of 47.0% (range 44.9-47.8%). The models estimated that most people will continue to die outside of hospital in 2050 (48.6 or 54.1%), and absolute numbers of both HDs and NHDs will increase from 2009 to 2050 [HD: by 20.1 million (30.6%); NHD: by 35.5 million (17.0%)]. Conclusions: Unlike in other industrialized countries, most people in Germany die outside of hospital. The need to plan for growing end-of-life care needs and ageing is urgent in Germany but also applies to the rest of Europe. A joint European policy must inform national strategies. (C) 2012 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.

Context Representations of illness have been studied in several populations, but research is limited in palliative care. Objectives To describe illness representations in a population with advanced disease receiving palliative care and to examine the relationship between illness perceptions, adaptive coping, and depression. Methods A cross-sectional survey of 301 consecutive eligible patients recruited from a palliative care service in south London, U.K. Measures used included the Brief Illness Perception Questionnaire (Brief IPQ), the Mental Adjustment to Cancer (MAC) Scale, and the Primary Care Evaluation of Mental Disorders Patient Health Questionnaire-9. Results Scores were not normally distributed for most questions on the Brief IPQ. The correlations found between items on the Brief IPQ were understandable in the context of advanced disease. MAC helplessness-hopelessness and fighting spirit were highly correlated with items on the Brief IPQ in opposite directions. The Brief IPQ domains of consequences, identity, concern, personal control, and emotion were associated with depression, a relationship that was not explained by adaptive coping. Seven causal attribution themes were identified: don’t know, personal responsibility, exposure, pathological process, intrinsic personal factors, chance, fate or luck, and other. Both lung cancer diagnosis and gender were found to be independently associated with personal responsibility attribution. None of the attribution themes were associated with the presence of depression. Conclusion Assessment of illness perceptions in palliative care is likely to yield important information about risk of depression and will help clinicians to personalize management of advanced disease.

Aims: To identify best practice about how palliative and end of life (P&EoLC) research outputs should be presented to key stakeholders [clinicians, managers and service users]. Methods: We conducted 3 consultation workshops with CECo: 2 with patients/carers, 1 with clinicians/managers about how P&EoLC research results should be presented. Prior to workshops participants were sent P&EoLC research overviews aimed at the public. Clinicians/managers were also sent journal abstracts. Following discussion, nominal group techniques were used to produce recommendations for how research should be presented which were rated. Narrative comments were collected. Results: Service user workshops comprised 18 participants making 41 recommendations. There was consensus that clarity of information and use of lay language was most important. Also more than primary endpoints should be given; include quality of life and a description of ‘what it was like to be on a study’. Users wanted independent indicators of quality such as a star rating system. Links to more information or help were needed as results could be upsetting. Despite lengthy discussion no consensus was reached on whether there should be explicit reference to P&EoLC. Clinician/manager workshops comprised 12 participants making 19 recommendations. The main recommendation was the need to define what terms mean: end of life, palliative care, advanced care. More direct information about clinical and financial implications of research should be available. They wanted abstracts to be more accessible and readable. Conclusions: Researchers need to be aware of numerous audiences when preparing research outputs. Increasingly lay people access research findings themselves via the internet, highlighting the need for clear and relevant research reports. Clinicians want reports that show both clinical and financial implications for practice. No consensus could be reached on use of terminology, replicating the EAPC 2009 position paper.

Aims: To identify agreed best practice for health economic evaluation in palliative and end of life (P&EoLC) research. Methods: We used the MORECare Transparent Expert Consultation approach to conduct consultation workshops with experts in health economics in P&EoLC research. Prior to workshops participants were sent overviews of pertinent issues in health economics in P&EoLC. Following workshop presentations and discussion, nominal group techniques were used to produce candidate recommendations. These were subsequently rated online by participating experts. Descriptive statistics were used to permit analysis of consensus and rated importance. Narrative comments were collated. Results: The workshop comprised 28 participants making 27 recommendations. The top three recommendations were: 1. The need to develop robust methods for assessing outcomes which take into account preferences and the way these change over time. 2. Researchers should give consideration to the implications of decisions on the equitable distribution of care. 3. Costing should be from the societal perspective and as well as statutory services include costs of other formal care (e.g. hospices and third sector) and informal care unless a clear rationale for using a different perspective is provided. The main area which failed to reach consensus were on the use of Quality Adjusted Life Years (QALYs) and whether individual opportunity costs should be used to measure the costs of informal care. Conclusions: When designing studies in P&EoLC it is recommended that outcome measures are responsive over time and costings should come from a societal perspective taking into account the equitable distribution of care. More research is needed given the lack of consensus in this area so that future recommendations can be made.

Aims: To identify agreed best practice for statistical methods in palliative and end of life (P&EoLC) research. Background: Carrying out statistical analysis in P&EoLC research can be problematic due to high levels of missing data and attrition as patients’ disease progresses. Methods: We used the MORECare Transparent Expert Consultation approach to conduct consultation workshops with experts in statistical methods in P&EoLC research. Prior to workshops participants were sent overviews of pertinent issues in statistical methods in P&EoLC. Following workshop presentations and discussion, nominal group techniques were used to produce candidate recommendations. These were subsequently rated online by participating experts. Descriptive statistics were employed to permit analysis of consensus and rated importance. Narrative comments were collated. Results: The statistical methods expert workshop comprised 20 participants making 19 recommendations. There was broad agreement across most recommendations, the top 5 recommendations were: 1. Types and amount of missing data should be reported along with imputation methods. 2. Pattern of missing data should be investigated to inform imputation method. 3. A statistical analysis plan should be in place. 4. A taxonomy should be devised to define types of attrition. 5. Use of transition questions and minimally important difference approach provides insight into response shift. Conclusions: When designing studies in P&EoLC it is recommended that high rates of attrition should not be seen as indicative of poor design and that a clear statistical analysis plan is in place to account for missing data and attrition. More research is required in statistical methods to assess these areas but also develop the emerging area of response shift.

Context Representations of illness have been studied in several populations, but research is limited in palliative care. Objectives To describe illness representations in a population with advanced disease receiving palliative care and to examine the relationship between illness perceptions, adaptive coping, and depression. Methods A cross-sectional survey of 301 consecutive eligible patients recruited from a palliative care service in south London, U.K. Measures used included the Brief Illness Perception Questionnaire (Brief IPQ), the Mental Adjustment to Cancer (MAC) Scale, and the Primary Care Evaluation of Mental Disorders Patient Health Questionnaire-9. Results Scores were not normally distributed for most questions on the Brief IPQ. The correlations found between items on the Brief IPQ were understandable in the context of advanced disease. MAC helplessness-hopelessness and fighting spirit were highly correlated with items on the Brief IPQ in opposite directions. The Brief IPQ domains of consequences, identity, concern, personal control, and emotion were associated with depression, a relationship that was not explained by adaptive coping. Seven causal attribution themes were identified: don’t know, personal responsibility, exposure, pathological process, intrinsic personal factors, chance, fate or luck, and other. Both lung cancer diagnosis and gender were found to be independently associated with personal responsibility attribution. None of the attribution themes were associated with the presence of depression. Conclusion Assessment of illness perceptions in palliative care is likely to yield important information about risk of depression and will help clinicians to personalize management of advanced disease.

Aims: To identify best practice about how palliative and end of life (P&EoLC) research outputs should be presented to key stakeholders [clinicians, managers and service users]. Methods: We conducted 3 consultation workshops with CECo: 2 with patients/carers, 1 with clinicians/managers about how P&EoLC research results should be presented. Prior to workshops participants were sent P&EoLC research overviews aimed at the public. Clinicians/managers were also sent journal abstracts. Following discussion, nominal group techniques were used to produce recommendations for how research should be presented which were rated. Narrative comments were collected. Results: Service user workshops comprised 18 participants making 41 recommendations. There was consensus that clarity of information and use of lay language was most important. Also more than primary endpoints should be given; include quality of life and a description of ‘what it was like to be on a study’. Users wanted independent indicators of quality such as a star rating system. Links to more information or help were needed as results could be upsetting. Despite lengthy discussion no consensus was reached on whether there should be explicit reference to P&EoLC. Clinician/manager workshops comprised 12 participants making 19 recommendations. The main recommendation was the need to define what terms mean: end of life, palliative care, advanced care. More direct information about clinical and financial implications of research should be available. They wanted abstracts to be more accessible and readable. Conclusions: Researchers need to be aware of numerous audiences when preparing research outputs. Increasingly lay people access research findings themselves via the internet, highlighting the need for clear and relevant research reports. Clinicians want reports that show both clinical and financial implications for practice. No consensus could be reached on use of terminology, replicating the EAPC 2009 position paper.

Aims: To identify agreed best practice for statistical methods in palliative and end of life (P&EoLC) research. Background: Carrying out statistical analysis in P&EoLC research can be problematic due to high levels of missing data and attrition as patients’ disease progresses. Methods: We used the MORECare Transparent Expert Consultation approach to conduct consultation workshops with experts in statistical methods in P&EoLC research. Prior to workshops participants were sent overviews of pertinent issues in statistical methods in P&EoLC. Following workshop presentations and discussion, nominal group techniques were used to produce candidate recommendations. These were subsequently rated online by participating experts. Descriptive statistics were employed to permit analysis of consensus and rated importance. Narrative comments were collated. Results: The statistical methods expert workshop comprised 20 participants making 19 recommendations. There was broad agreement across most recommendations, the top 5 recommendations were: 1. Types and amount of missing data should be reported along with imputation methods. 2. Pattern of missing data should be investigated to inform imputation method. 3. A statistical analysis plan should be in place. 4. A taxonomy should be devised to define types of attrition. 5. Use of transition questions and minimally important difference approach provides insight into response shift. Conclusions: When designing studies in P&EoLC it is recommended that high rates of attrition should not be seen as indicative of poor design and that a clear statistical analysis plan is in place to account for missing data and attrition. More research is required in statistical methods to assess these areas but also develop the emerging area of response shift.

Aims: To identify agreed best practice for health economic evaluation in palliative and end of life (P&EoLC) research. Methods: We used the MORECare Transparent Expert Consultation approach to conduct consultation workshops with experts in health economics in P&EoLC research. Prior to workshops participants were sent overviews of pertinent issues in health economics in P&EoLC. Following workshop presentations and discussion, nominal group techniques were used to produce candidate recommendations. These were subsequently rated online by participating experts. Descriptive statistics were used to permit analysis of consensus and rated importance. Narrative comments were collated. Results: The workshop comprised 28 participants making 27 recommendations. The top three recommendations were: 1. The need to develop robust methods for assessing outcomes which take into account preferences and the way these change over time. 2. Researchers should give consideration to the implications of decisions on the equitable distribution of care. 3. Costing should be from the societal perspective and as well as statutory services include costs of other formal care (e.g. hospices and third sector) and informal care unless a clear rationale for using a different perspective is provided. The main area which failed to reach consensus were on the use of Quality Adjusted Life Years (QALYs) and whether individual opportunity costs should be used to measure the costs of informal care. Conclusions: When designing studies in P&EoLC it is recommended that outcome measures are responsive over time and costings should come from a societal perspective taking into account the equitable distribution of care. More research is needed given the lack of consensus in this area so that future recommendations can be made.

Objectives: European populations are ageing, but data on the associated end-of-life care needs are scarce. This study aimed to analyse population, mortality and place of death (PoD) trends in Germany since 1950, and to project mortality by PoD until 2050. Study design and methods: Secondary analysis of national statistics on population, mortality and PoD by age and gender. Future numbers and proportions of deaths by PoD - hospital deaths (HDs) and non-hospital deaths (NHDs) - were based on recent trends (2005-2009). Linear models accounted for the effect of age and gender. Results: The German population increased by 19.0% between 1950 and 2002, and has remained relatively stable ever since. However, it is expected that it will decrease (15.4%) from 2009 to 2050 (from 81.8 to 69.4 million). The annual number of deaths has shown an increasing trend, except for a decrease in 1975-2004. A 26.0% increase is expected from 2009 to 2050 (854,544 to 1,077,000 deaths). Older people (age >= 75 years) will account for 87.8% of all deaths in 2050 (64.4% in 2009). The proportion of HDs was stable, with an annual mean of 47.0% (range 44.9-47.8%). The models estimated that most people will continue to die outside of hospital in 2050 (48.6 or 54.1%), and absolute numbers of both HDs and NHDs will increase from 2009 to 2050 [HD: by 20.1 million (30.6%); NHD: by 35.5 million (17.0%)]. Conclusions: Unlike in other industrialized countries, most people in Germany die outside of hospital. The need to plan for growing end-of-life care needs and ageing is urgent in Germany but also applies to the rest of Europe. A joint European policy must inform national strategies. (C) 2012 The Royal Society for Public Health. Published by Elsevier Ltd. All rights reserved.

Objectives To determine the prevalence, severity and remission of desire for hastened death (DHD) in a UK representative sample of patients with advanced disease receiving palliative care and to examine the associations of desire for death. Design A cross-sectional survey with 4-week follow-up. Setting St Christopher's Hospice, Sydenham, South London, which is a large hospice with homecare, outpatient and inpatient facilities serving five London boroughs. Participants 300 patients newly referred to the hospice for palliative care. Main outcome measures The Desire for Death Rating Scale (DDRS). Results At T1 33/300 (11%) reported DHD and 11/300 (3.7%) had more serious or pervasive DHD. Of those who expressed DHD at T1 and were interviewed at both time points, 35% no longer reported these thoughts. Of those who reported no DHD at T1, 8% reported DHD at T2. The majority of those who had more severe DHD at T1 had a reduced DHD score by T2. Factors associated with T1 DHD included presence of non-malignant disease, depression, more severe physical symptoms, hopelessness and perceived loss of dignity. Conclusions The prevalence of DHD was at the lower end of that seen in previous studies using similar samples. More severe DHD was uncommon and for most part remitted to some extent during the study. The provision of symptom control and timely detection and intervention for depression coupled with a focus on optimising function, instilling hope and preserving dignity are likely to contribute to alleviation of DHD in patients with advanced illness.

Objectives To determine the prevalence, severity and remission of desire for hastened death (DHD) in a UK representative sample of patients with advanced disease receiving palliative care and to examine the associations of desire for death. Design A cross-sectional survey with 4-week follow-up. Setting St Christopher's Hospice, Sydenham, South London, which is a large hospice with homecare, outpatient and inpatient facilities serving five London boroughs. Participants 300 patients newly referred to the hospice for palliative care. Main outcome measures The Desire for Death Rating Scale (DDRS). Results At T1 33/300 (11%) reported DHD and 11/300 (3.7%) had more serious or pervasive DHD. Of those who expressed DHD at T1 and were interviewed at both time points, 35% no longer reported these thoughts. Of those who reported no DHD at T1, 8% reported DHD at T2. The majority of those who had more severe DHD at T1 had a reduced DHD score by T2. Factors associated with T1 DHD included presence of non-malignant disease, depression, more severe physical symptoms, hopelessness and perceived loss of dignity. Conclusions The prevalence of DHD was at the lower end of that seen in previous studies using similar samples. More severe DHD was uncommon and for most part remitted to some extent during the study. The provision of symptom control and timely detection and intervention for depression coupled with a focus on optimising function, instilling hope and preserving dignity are likely to contribute to alleviation of DHD in patients with advanced illness.