The rise of home death in the COVID-19 pandemic: a population-based study of death certificate data for adults from 32 countries, 2012-2021.

Background: During the coronavirus 2019 disease (COVID-19) pandemic, health systems had to respond to the needs of COVID-19 patients, while caring for patients with other life-threatening conditions. Pandemics, such as the COVID-19 pandemic, stir global health and mortality patterns. This is likely to include trends in dying places. In this paper, we examine trends in place of death for adults in 32 countries, comparing the initial COVID-19 pandemic years (2020-2021) with the eight years before the pandemic (2012-2019). Methods: Data on place of death for all adults (18 years and over) that died from 1 January 2012 to 31 December 2021 were requested (47 countries approached, 32 included). The classification of place of death varied widely between countries. "Home" was the most common category, the remaining category groups comprised "hospital or health institution", "other defined", and "ill-defined". We analysed place of death data in an aggregate form, by sex, age group, and selected underlying causes of death (cancer, dementia, and COVID-19). Findings: The study included 100.7 million people (51.5% male, 68.0% with ≥70 years), 20.4% died from cancer and 5.8% from dementia; 30.8% of deaths took place at home. The percentage of home deaths rose from 30.1% in 2012-2013 to 30.9% in 2018-2019 and further to 32.2% in the pandemic (2020-2021). Home deaths increased during the pandemic in 23 countries. In most countries the rise was greater in women and cancer; age differences were not consistent. Interpretation: Our study shows that there was a rise in home deaths during the pandemic, but with variability across countries, sex, age, and causes of death. The sex difference observed in most countries may have several explanations, including more engagement of women in discussions about end of life care planning and hospital admission avoidance. A higher rise of home deaths among people dying of cancer may be explained by the more predictable disease trajectory compared to non-malignant conditions, as well as earlier and better integrated palliative care. Funding: This work is part of the EOLinPLACE Project, which has received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No 948609).

A self-management psychoeducational eHealth program to support and empower people with advanced cancer and their family caregivers: Development using the scrum methodology.

Background: eHealth programs could be a flexible and scalable resource to support and empower people with advanced cancer and their family caregivers. A face-to-face intervention that has demonstrated effectiveness is the "FOCUS" program, developed and tested in the USA. Recently the FOCUS program was translated and adapted to the European context as part of an international study in six European countries, resulting in the "FOCUS+" program. FOCUS+ served as the basis for development of the web-based iFOCUS program. Objective: We aim to (1) describe the development process of the iFOCUS program, (2) outline the challenges we encountered and how they were overcome, and (3) present findings regarding the acceptability and usability of iFOCUS. Methods: We used the four phased agile Scrum methodology to develop iFOCUS and applied set timeframes of rapid program development and evaluation (sprints). Five teams were involved in the development i.e. a core development group, a web development team, an international consortium, audio-visual experts, and potential end-users. Results: Development followed seven steps, integrated across the four phases of Scrum: (1) concept design, (2) development of mock-ups, (3) Feedback from the international consortium, (4) technical development of iFOCUS, (5) creating versions for the six participating countries, (6) preliminary testing of iFOCUS and (7) implementing the final version in a randomized controlled trial. User testing included 42 participants (twenty patient-family caregiver dyads and two bereaved family caregivers) who reviewed the iFOCUS program. Users found the iFOCUS program to be acceptable and usable. Feedback mainly focused on text size and fonts. Minor changes to the content, tailoring, and program flow were required. During development we encountered program specific and general challenges. Using the Scrum methodology facilitated iterative development to address these issues. For some challenges, such as tailoring, we had to make pragmatic choices due to time and resource limitations. Conclusions/discussion: The development of a tailored, self-managed psychoeducational eHealth program for people with advanced cancer and their family caregivers is an intense process and requires pragmatic choices. By keeping the emphasis on the target population during development, no specific remarks pertaining to advanced cancer were identified. Some challenges we encountered are common to eHealth development, others were related to program specific requirements. Using the Scrum methodology allows teams to efficiently collaborate during program development and increases the flexibility of the development process. Interpersonal contact between research staff and potential end-users is recommended during and after the development of eHealth programs.

Recruitment and retention challenges and strategies in randomized controlled trials of psychosocial interventions for children with cancer and their parents: a collective case study.

In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment.  Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents.  Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies.

Discomfort With Suffering and Dying, a Cross-Sectional Survey of the General Public.

CONTEXT: Death and the process of dying have become increasingly medicalized and professionalized. The associated cultural estrangement from death may affect how comfortable we feel about death and dying. This study examines the general public's discomfort with another person's suffering and dying, and whether these feelings are associated with specific personal characteristics or experiences. OBJECTIVES: Cross-sectional survey in a random sample of people aged 16 or older in four municipalities in Flanders, Belgium (N=4400). We used the self-developed construct Discomfort with someone's suffering and dying. A directed acyclic graph guided the development of a multivariable regression model which explored the effect of different variables on the main outcome measure. RESULTS: A total of 2008 completed questionnaires were returned (response rate: 45.6%). Average discomfort with someone's suffering and dying was 3.74 (SD = 0.89). Being female or currently mourning a loss were associated with more discomfort. Not being religious, having better knowledge about palliative care, having worked in healthcare, having been with someone else at the time of their death and having been culturally exposed to death and dying were associated with less discomfort. CONCLUSION: A considerable level of discomfort is present within the general public about the suffering and dying of others and this may increase social stigma and a tendency to avoid seriously ill people and their social surroundings. Our findings suggest that interventions may help shift this societal discomfort if they incorporate a focus on cultural and experiential exposure and increasing knowledge about palliative care.

Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data.

This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month.    Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.

Characteristics and outcomes of peer consultations for assisted dying request assessments: Cross-sectional survey study among attending physicians.

Background: In most jurisdictions where assisted dying practices are legal, attending physicians must consult another practitioner to assess the patient's eligibility. Consequently, in some jurisdictions, they can rely on the expertise of trained assisted dying consultants (trained consultants). However, these peer consultations remain under-researched. We examined the characteristics and outcomes of peer consultations to assess an assisted dying request with trained consultants, and explored how these characteristics influence the performance of assisted dying. Methods: We conducted a cross-sectional survey in 2019-2020 in Belgium among attending physicians who had consulted a trained consultant for an assisted dying request assessment (N = 904). Results: The valid response rate was 56% (502/903). The vast majority of attending physicians (92%) who had consulted a trained consultant were general practitioners. In more than half of the consultations (57%), the patient was diagnosed with cancer. In 66%, the patient was aged 70 or older. Reported as the patients' most important reasons to request assisted dying: suffering without prospect of improving in 49% of the consultations, loss of dignity in 11%, pain in 9%, and tiredness of life in 9%. In the vast majority of consultations (85%), the attending physician consulted the trained consultant because of the expertise, and in nearly half of the consultations (46%) because of the independence. In more than nine out of ten consultations (91%), the consultant gave a positive advice: i.e., substantive requirements for assisted dying were met. Eight out of ten consultations were followed by assisted dying. The likelihood of assisted dying was higher in consultations in which loss of dignity, loss of independence in daily living, or general weakness or tiredness were reasons for the request. Conclusion: Our findings indicate that the peer consultation practice with trained consultants is most often embedded in a primary care setting. Moreover, our study corroborates previous research in that assisted dying is performed relatively less frequently in patients with cancer and more often in patients with general deterioration. Our findings suggest that attending physicians hold peer consultations with trained consultants to endorse their own decision-making and to request additional support.

Trends in appropriateness of end-of-life care in people with cancer, COPD or with dementia measured with population-level quality indicators.

INTRODUCTION: Measuring changes in the appropriateness of end-of-life care provided to patients with advanced illness such as cancer, COPD or dementia can help governments and practitioners improve service delivery and quality of life. However, an assessment of a possible shift in appropriateness of end-of-life care across the population is lacking. AIM: Measuring quality indicators with routinely collected population-level data, this study aims to evaluate the appropriateness of end-of-life care for people with cancer, COPD or dementia in Belgium. DESIGN: A population-level decedent cohort study, using data from eight population-level databases, including death certificate and health claims data. We measured validated sets of quality indicators for appropriateness of end-of-life care. SETTING/PARTICIPANTS: All people who died from cancer or COPD or with dementia between 1st January 2010 and 1st January 2016 in Belgium. RESULTS: We identified three main trends over time across the three disease groups of increasing use of: family physicians in the last 30 days of life (+21.7% in cancer, +33.7% in COPD and +89.4% in dementia); specialist palliative care in the last 14 days of life (+4.6% in cancer, +36.9% in COPD, +17.8% in dementia); and emergency department in the last 30 days of life (+7.0% in cancer, +4.4% in COPD and +8.2% in dementia). CONCLUSIONS: Although we found an increase of both specialized palliative care and generalist palliative care use, we also found an increase in potentially inappropriate care, including ED and ICU admissions. To increase the quality of end-of-life care, both timely initiating (generalist and specialist) palliative care and avoiding potentially inappropriate care transitions, treatments and medications need to be quality performance targets.

Using behavioral theories to study health-promoting behaviors in palliative care research.

BACKGROUND: Behavioral theories are often used to better understand and change health-promoting behaviors and develop evidence-based interventions. However, researchers often lack of knowledge on how to use these theories in palliative care and people confronted with serious illness. Clear examples or guidelines are needed. AIM: To describe how behavioral theories can be used to gain insight into critical factors of health-promoting behavior in seriously ill people, using a case example of "starting a conversation about palliative care with the physician" for people with incurable cancer. METHODS: We used a health promotion approach. Step 1: We chose a theory. Step 2: We applied and adapted the selected theory by performing interviews with the target population which resulted in a new behavioral model. Step 3: We operationalized the factors of this model. An expert group checked content validity. We tested the questionnaire cognitively. Step 4: We conducted a survey study and performed logistic regression analyses to identify the most important factors. RESULTS: Step 1: We selected the Theory of Planned Behavior. Step 2: This theory was applicable to the target behavior, but needed extending. Step 3: The final survey included 131 items. Step 4: Attitudinal factors were the most important factors associated with the target behavior of starting a conversation about palliative care with the physician. CONCLUSIONS: This paper describes a method applied to a specific example, offering guidance for researchers and practitioners interested in understanding and changing a target behavior and its factors in seriously ill people.

Researching Compassionate Communities: Identifying theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives.

BACKGROUND: Compassionate Communities have been put forward as a new model for community-based palliative care to positively impact the health and wellbeing of those experiencing challenges of serious illness, death, dying, and loss. Despite the growing international movement to develop these public health initiatives to end-of-life care, only a handful of initiatives have undergone some form of evaluation. AIM: To provide guidance on designing evaluation research by identifying theoretical frameworks to understand the development, implementation, and underlying mechanisms of Compassionate Communities. METHODS: To identify suitable theoretical frameworks for the study of Compassionate Communities, we applied two steps. The first step examined the characteristics of Compassionate Communities and translated them into assessment criteria for the selection of theoretical frameworks. The second step consisted of applying the identified assessment criteria to a list of widely used and highly cited theoretical frameworks. RESULTS: Three well-established theoretical frameworks were identified as being most suitable to study the development, implementation, and underlying mechanisms of Compassionate Communities: The Consolidated Framework for Implementation Research (CFIR), the integrated-Promoting Action on Research Implementation in Health Services framework (i-PARIHS), and the Extended Normalization Process Theory (ENPT). CONCLUSIONS: The article supports and encourages the use of theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. The complementary use of two determinant frameworks and an implementation theory provides theoretical grounding to gain rich insights into the emergent and shifting interplays between agency, social processes, and contextual factors that shape the development and implementation of Compassionate Communities.

Population-Level Analysis of Appropriateness of End-of-Life Care for Children with Neurologic Conditions.

OBJECTIVE: The objective of this study was to measure the appropriateness of end-of-life care for children who died with neurologic conditions. STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of children with neurologic conditions who died in Belgium between 2010 and 2017. We measured a set of 22 face-validated quality indicators. The set concerns 12 indicators of potentially appropriate end-of-life care (eg, specialized comfort medication, physician contact, continuous care) and 10 indicators of potentially inappropriate end-of-life care (eg, diagnostic tests, phlebotomy). We performed ANOVA for predictors (age, sex, disease category, nationality, having siblings, year of death) for scales of appropriate and inappropriate care. RESULTS: Between 2010 and 2017, 139 children with neurologic conditions died in Belgium. For potentially appropriate care, in the last 30 days, 76% of children received clinical care, 55% had continuous care relationships, 17% had contact with a general physician, 8% of children received specialized comfort medication, and 14% received care from a palliative care team. For potentially inappropriate care, in the last 14 days, 45% had blood drawn and 27% were admitted to intensive care unit. CONCLUSIONS: Our study found indications of appropriate as well as inappropriate end-of-life care for children who died with neurologic conditions. These findings reveal a substantial margin for potential quality improvement, in regard to palliative care provision, multidisciplinary care, financial support, specialized comfort medication, clinical follow-up, general physician contact, diagnostics, and blood drawing.

The interRAI CHESS scale is comparable to the palliative performance scale in predicting 90-day mortality in a palliative home care population.

BACKGROUND: Prognostic accuracy is important throughout all stages of the illness trajectory as it has implications for the timing of important conversations and decisions around care. Physicians often tend to over-estimate prognosis and may under-recognize palliative care (PC) needs. It is therefore essential that all relevant stakeholders have as much information available to them as possible when estimating prognosis. AIMS: The current study examined whether the interRAI Changes in Health, End-Stage Disease, Signs and Symptoms (CHESS) Scale is a good predictor of mortality in a known PC population and to see how it compares to the Palliative Performance Scale (PPS) in predicting 90-day mortality. METHODS: This retrospective cohort study used data from 2011 to 2018 on 80,261 unique individuals receiving palliative home care and assessed with both the interRAI Palliative Care instrument and the PPS. Logistic regression models were used to evaluate the relationship between the main outcome, 90-day mortality and were then replicated for a secondary outcome examining the number of nursing visits. Comparison of survival time was examined using Kaplan-Meier survival curves. RESULTS: The CHESS Scale was an acceptable predictor of 90-day mortality (c-statistic = 0.68; p < 0.0001) and was associated with the number of nursing days (c = 0.61; p < 0.0001) and had comparable performance to the PPS (c = 0.69; p < 0.0001). The CHESS Scale performed slightly better than the PPS in predicting 90-day mortality when combined with other interRAI PC items (c = 0.72; p < 0.0001). CONCLUSION: The interRAI CHESS Scale is an additional decision-support tool available to clinicians that can be used alongside the PPS when estimating prognosis. This additional information can assist with the development of care plans, discussions, and referrals to specialist PC teams.

Development of an intervention (PICASO) to optimise the palliative care capacity of social workers in Flanders: a study protocol based on phase I of the Medical Research Council framework.

INTRODUCTION: An important challenge for future palliative care delivery is the growing number of people with palliative care needs compared with the limited qualified professional workforce. Existing but underused professional potential can further be optimised. This is certainly the case for social work, a profession that fits well in multidisciplinary palliative care practice but whose capacities remain underused. This study aims to optimise the palliative care capacity of social workers in Flanders (Belgium) by the development of a Palliative Care Program for Social Work (PICASO). METHODS AND ANALYSIS: This protocol paper covers the steps of the development of PICASO, which are based on phase I of the Medical Research Council framework. However, additional steps were added to the original framework to include more opportunities for stakeholder involvement. The development of PICASO follows an iterative approach. First, we will identify existing evidence by reviewing the international literature and describe the problem by conducting quantitative and qualitative research among Flemish social workers. Second, we will further examine practice and identify an appropriate intervention theory by means of expert panels. Third, the process and outcomes will be depicted in a logic model. ETHICS AND DISSEMINATION: Ethical approval for this study was given by the KU Leuven Social and Societal Ethics Committee (SMEC) on 14 April 2021 (reference number: G-2020-2247-R2(MIN)). Findings will be disseminated through professional networks, conference presentations and publications in scientific journals.

Systematic translation and adaptation of the FOCUS program, a USA-based supportive intervention for persons with cancer and their family caregivers, for use in six European countries.

PURPOSE: Having advanced cancer presents many challenges for patients and family caregivers. The FOCUS program is a psychoeducational nurse-led intervention, developed in the USA, to support dyads of patients with cancer and their family caregivers to live with the illness. The program includes a conversation manual and information resources for dyads. We aimed to develop a version of the program for dyads facing advanced cancer in six European countries. METHOD: The Participatory and Iterative Process Framework for Language Adaptation (PIPFLA) was used to guide the translation of the program to the local contexts of Belgium, Denmark, Ireland, Italy, the Netherlands, and the UK. In several rounds, potential program users (e.g., nurses, clinicians, patients, family caregivers) and researchers from all six countries reviewed program materials and advised on adaptations. RESULTS: The PIPFLA process resulted in one European version of the program in different languages (FOCUS +). The FOCUS + conversation manual is uniform across all countries. The main adaptations included additional attention to both family caregiver and patient needs; more emphasis on self-management, advance care planning, and shared responsibilities; discussing the dyad's outlook rather than optimism; addressing the role of nurses as educational rather than therapeutic; and more suggestions to refer dyads to health care professionals for specific care needs. The information resources for dyads were adapted to fit with local contexts. CONCLUSION: The PIPFLA methodology is an efficient and effective framework to thoroughly translate and culturally adapt a complex USA-based program for use in six European countries in collaboration with end users.

Identification of the most important factors related to people with cancer starting a palliative care conversation: A survey study.

OBJECTIVE: A late conversation about palliative care needs can lead to suboptimal care in the final months/weeks of life. Insight into factors related to patients' communication about palliative care is needed. This study aims to identify the factors associated with starting/intending to start a conversation about palliative care with the physician. METHODS: We performed a cross-sectional interviewer-administered survey among people with incurable cancer. Purposive sampling was used, taking into account theoretically relevant heterogeneity. The questionnaire was developed based on the theory of planned behavior. Uni- and multivariable logistic regression analyses were performed. RESULTS: Out of 80 participants, ten (13%) started the palliative care conversation and 18 (23%) intended to do so. People holding a positive attitude towards starting/intending to start the conversation (odds ratio [OR] 4.74; 95% CI 2.35-9.54), perceiving more benefits of it (OR 2.60; 95% CI 1.37-4.96) and perceiving a positive attitude towards the behavior in family/friends (OR 2.07; 95% CI 1.26-3.41) and the physician (OR 2.19; 95% CI 1.39-3.45) were more likely to start/intend to start a palliative care conversation; people perceiving more disadvantages (OR 0.53; 95% CI 0.32-0.87) and barriers (OR 0.31; 95% CI 0.15-0.63) were less likely to do so. These factors explained 64% of the variance. CONCLUSIONS: Our findings show that psychological and perceived socio-environmental factors, particularly patients' attitudes, are associated with starting a conversation about palliative care. Theory-based interventions targeting these strong associations might have a high potential to empower people with cancer to take the initiative in communication about palliative care and to improve timely initiation of palliative care.

Assisted dying request assessments by trained consultants: changes in practice and quality - Repeated cross-sectional surveys (2008-2019).

OBJECTIVES: To study changes in the peer consultation practice of assessing assisted dying requests and its quality among trained 'Life End Information Forum' (LEIF) consultants in Belgium between 2008 and 2019. METHODS: Cross-sectional surveys conducted in 2008 (N=132) and 2019 (N=527) among all registered LEIF consultants. RESULTS: The response rate was 75% in 2008 and 57% in 2019. In 2019 compared with 2008, more LEIF consultants were significantly less than 40 years old (25%/10%, p=0.006) and at least 60 years old (34%/20%, p=0.006). In their activities regarding assessments of assisted dying requests over 12 months, we found a significant increase in the number of patients who did not meet the substantive requirements for assisted dying in 2019 compared with 2008 (1-4 patients: 41.1 %/58.8%, p=0.020). In their most recent assessments of an assisted dying request, LEIF consultants in 2019 made significantly more assessments of patients aged 80 years or older than in 2008 (31%/9%, p<0.001), and significantly fewer assessments for patients with cancer (53%/70%, p=0.034). Regarding adherence to quality criteria for consultation, LEIF consultants discussed unbearable suffering (87%/65%, p=0.003) and alternative treatments (palliative: 48 %/13%, p<0.001; curative: 28%/5%, p=0.002) significantly more often with the attending physician. CONCLUSIONS: Changes in peer consultation practice and its quality among LEIF consultants likely reflect changes in assisted dying practice in general, as well as changes in LEIF consultations on more complex cases for which LEIF consultants' expertise is required.

Physicians' Experiences and Perceptions of Environmental Factors Affecting Their Practices of Continuous Deep Sedation until Death: A Secondary Qualitative Analysis of an Interview Study.

As previous research has paid little attention to environmental factors affecting the practice of continuous deep sedation until death (CDS), we aimed to explore these using physicians' experiences and perceptions. We performed an interpretative thematic analysis of primary data from a qualitative interview study conducted from February to May 2019 in Belgium with 47 physicians. Structural factors were identified: the lack of professional and/or technical support in monitoring sedated patients; the use of guidelines in team contexts; the time constraints for treating individual patients and work pressure; the structural knowledge gap in medical education; the legal context for assisted dying; and the lack of a clear legal context for CDS. Cultural factors were identified: the moral reservations of care teams and/or institutions towards CDS; the presence of a palliative care culture within care teams and institutions; the culture of fear of making clinical errors regarding CDS among a group of physicians; the professional stigma of performing assisted dying among some of the physician population; the different understandings of CDS in medical and policy fields; and the societal taboo around suffering at the end of life and natural death. To conclude, improving CDS practice requires a whole-system approach considering environmental factors.

A multi-stage process to develop quality indicators for community-based palliative care using interRAI data.

BACKGROUND: Individuals receiving palliative care (PC) are generally thought to prefer to receive care and die in their homes, yet little research has assessed the quality of home- and community-based PC. This project developed a set of valid and reliable quality indicators (QIs) that can be generated using data that are already gathered with interRAI assessments-an internationally validated set of tools commonly used in North America for home care clients. The QIs can serve as decision-support measures to assist providers and decision makers in delivering optimal care to individuals and their families. METHODS: The development efforts took part in multiple stages, between 2017-2021, including a workshop with clinicians and decision-makers working in PC, qualitative interviews with individuals receiving PC, families and decision makers and a modified Delphi panel, based on the RAND/ULCA appropriateness method. RESULTS: Based on the workshop results, and qualitative interviews, a set of 27 candidate QIs were defined. They capture issues such as caregiver burden, pain, breathlessness, falls, constipation, nausea/vomiting and loneliness. These QIs were further evaluated by clinicians/decision makers working in PC, through the modified Delphi panel, and five were removed from further consideration, resulting in 22 QIs. CONCLUSIONS: Through in-depth and multiple-stakeholder consultations we developed a set of QIs generated with data already collected with interRAI assessments. These indicators provide a feasible basis for quality benchmarking and improvement systems for care providers aiming to optimize PC to individuals and their families.

The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility.

BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists. METHODS: Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences. RESULTS: The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families. CONCLUSION: The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.

Civic engagement in serious illness, death, and loss: A systematic mixed-methods review.

BACKGROUND: New public health approaches to palliative care such as compassionate communities aim to increase capacity in serious illness, death, and loss by involving civic society. Civic engagement has been described in many domains of health; a description of the characteristics, processes, and impact of the initiatives in palliative care is lacking. AIM: To systematically describe and compare civic engagement initiatives in palliative care in terms of context, development, impact, and evaluation methods. DESIGN: Systematic, mixed-methods review using a convergent integrated synthesis approach. Registered in Prospero: CRD42020180688. DATA SOURCES: Six databases (PubMed, Scopus, Sociological Abstracts, WOS, Embase, PsycINFO) were searched up to November 2021 for publications in English describing civic engagement in serious illness, death, and loss. Additional grey literature was obtained by contacting the first authors. We performed a quality appraisal of the included studies. RESULTS: We included 23 peer-reviewed and 11 grey literature publications, reporting on nineteen unique civic engagement initiatives, mostly in countries with English as one of the official languages. Initiatives involved the community in their development, often through a community-academic partnership. Activities aimed to connect people with palliative care needs to individuals or resources in the community. There was a variety of evaluation aims, methods, outcomes, and strength of evidence. Information on whether or how to sustain the initiatives was generally lacking. CONCLUSIONS: This is the first review to systematically describe and compare reported civic engagement initiatives in the domain of palliative care. Future studies would benefit from improved evaluation of impact and sustainability.