Social connection and end-of-life outcomes among older people in 19 countries: a population-based longitudinal study.

BACKGROUND: Social connection is a key determinant of health, but its role in shaping end-of-life outcomes is poorly understood. We examined changes in structure, function, and quality components of social connection in older people's last years of life, and the extent to which social connection predicts end-of-life outcomes (ie, symptoms, health-care utilisation, and place of death). METHODS: This study used longitudinal data of representative samples from across 18 European countries and Israel in the Survey of Health, Ageing, and Retirement in Europe (SHARE), the largest European cohort study of people aged 50 years or older. We included deceased participants of waves 4 and 6 (which contained social network modules) for whom a proxy provided an end-of-life interview. We did paired sample t-tests (for continuous variables), Wilcoxon signed-rank tests (for ordinal variables), and McNemar's tests (for non-ordinal categorical variables) to assess changes in structure, function, and quality components of social connection between waves 4 and 6. To examine social connection as a predictor of end-of-life outcomes, we used social connection data from wave 6 core interviews and end-of-life interviews from wave 7, conducted with a proxy respondent covering the deceased participant's last year of life. End-of-life outcomes included symptoms (pain, breathlessness, and anxiety or sadness) in the last month of life, health-care utilisation in the last year of life, and place of death. We conducted a mixed-effects logistic regression analysis per social connection measure, for each end-of-life outcome. FINDINGS: Data were collected in 2011-12 for wave 4, 2015-16 for wave 6, and 2017-18 for wave 7. We studied 3356 individuals (mean age at death was 79·7 years [SD 10·2]), with interviews conducted, on average, 4·6 (1·2) years (wave 4) and 1·1 (0·7) years (wave 6) before death. From wave 4 to wave 6, the following changes in social connection were observed: proportion of married or partnered participants (from 1406 [60·9%] of 2310 to 1438 [57·1%] of 2518; p<0·0001), receiving personal care or practical help (from 781 [37·2%] of 2099 to 1334 [53·1%] of 2512; p<0·0001), loneliness (from mean 1·4 [SD 0·5] to 1·5 [0·6]; p<0·0001; scale 1-3), satisfaction with social network (from 8·8 [1·67] to 8·7 [1·7]; p=0·037; scale 0-10), and emotional closeness to social network (eg, from 1883 [88·8%] of 2121 to 1710 [91·3%] of 1872 participants who indicated being either very close or extremely close to social network members; p<0·0001). Higher levels of loneliness at wave 6 predicted a greater likelihood of experiencing symptoms in the last month of life (odds ratio range across symptoms: 1·29 [95% CI 1·08-1·55] to 1·58 [1·32-1·89]). Being married (1·32 [1·03-1·68]) or receiving personal care or practical help (1·25 [1·04-1·49]) predicted death in hospital. INTERPRETATION: Social connection undergoes multifaceted changes towards older people's end of life, countering prevalent ideas of generally declining social trajectories. Loneliness in the final months of life might be a risk factor for end-of-life symptoms. Further research is needed to substantiate a causal relationship and to identify underpinning mechanisms, which could inform screening and prevention measures. FUNDING: Research Foundation-Flanders and European Union.

Investigating experiences of people with advanced breast or lung cancer in their natural context: protocol for an experience sampling study.

INTRODUCTION: People with advanced cancer can experience a wide range of multidimensional symptoms or concerns, but little is known about when and how these fluctuate in daily life. Experience sampling methods (ESMs) involve repeated self-reports in people's natural contexts aimed at uncovering everyday life experiences. ESM has limited recall bias and good ecological validity but might be burdensome to patients. This study aims to pretest and evaluate the feasibility and clinical utility of a validated ESM and use it to explore everyday experiences of people living with advanced breast or lung cancer. METHODS AND ANALYSIS: In step 1, we will optimise our ESM method by pretesting it through usability interviews and a pilot ESM study. In step 2, we will evaluate and use the ESM method through an observational ESM study to investigate the daily experiences of people with advanced breast or lung cancer. Step 2 also includes interviews with healthcare professionals to determine the clinical utility of ESM in oncology. Participants will complete a digital questionnaire ten times per day, measuring momentary experiences in the physical, psychological, social, spiritual-existential domains and context. Multilevel regression models will analyse fluctuations and temporal relations among measured experiences and context. Analyses also include evaluation of compliance and participation rates. We will apply content analysis to the usability interviews and follow-up interviews of the pilot ESM study. ETHICS AND DISSEMINATION: We obtained approval from the ethics committees of the University Hospitals of Brussels (BUN: 1432023000043) and Ghent (ONZ-2023-0136). Results will be published in open-access, peer-reviewed journals and presented at conferences. If ESM appears feasible in this population, it could offer new insights into the daily experiences and help optimise support for people with advanced cancer.

The perspectives of people with dementia and their supporters on advance care planning: A qualitative study with the European Working Group of People with Dementia.

BACKGROUND: Advance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia. AIM: To gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop recommendations for changes to the definition. DESIGN: An in-depth qualitative study was conducted, analysing online focus groups and interviews using thematic analysis. SETTING/PARTICIPANTS: We included 12 people with dementia and 9 supporters. RESULTS: Participants suggested several changes to the current advance care planning definition: mentioning people with decreasing decisional capacity; better reflecting the role of family and/or trust-based relationships; reducing focus on end-of-life/medical decisions; strengthening focus on social aspects of care. Elements of the current definition that participants suggested keeping and highlighting include the framing of advance care planning as a continuous process, that is also optional; mention of communication next to documentation of decisions; and the importance of proxy decision makers. Based on this input, we developed three overarching and 16 specific recommendations for a modified definition of advance care planning that is inclusive of people with dementia. CONCLUSIONS: The perspectives of the European Working Group of People with Dementia and their supporters highlighted the need for a person-centred and dementia-inclusive advance care planning definition. We provide tangible recommendations for future adaptations of the definition that reflect these perspectives.

Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals.

BACKGROUND: Advance care planning (ACP) is a process that enables individuals to define goals and preferences for their future care. It is particularly relevant for people with dementia and their family. Interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the ACP process. However, considering the specific needs of people with dementia, it is important to develop adapted tools for this population. This study was conducted to define the content of an interactive website for people with dementia and their family caregivers to support them in ACP and to assess the barriers and facilitators for potential users in finding and using such a website from the perspective of family caregivers and healthcare professionals. METHODS: Online focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, using a semi-structured topic guide. To analyse the data, we used thematic framework analysis with a combination of deductive and inductive approaches to coding. RESULTS: We conducted 4 focus groups with family caregivers of people with dementia (n = 18) and 3 with healthcare professionals (n = 17). Regarding the content of the website, participants highlighted that information on ACP (what and why) and guidance on how to start talking about ACP throughout the dementia trajectory should be included on the website. To increase the usability of the website, most participants considered a text-to-speech and a print option as important functionalities. A lack of computer literacy was found to be the most significant barrier to finding and using the website. CONCLUSION: A website for people with dementia and their family caregivers to support them in ACP should focus on comprehensive content on ACP, peer testimonials, and interactive communication tools. Moreover, there should be certain flexibility in navigating through the website so people with dementia and their family caregivers can use it at their own pace. As the next step, we will include people with dementia in developing the website.

Evaluating an advance care planning website for people with dementia and their caregivers: Protocol for a mixed method study.

Background: Web-based tools (e.g., websites, apps) for people with dementia and their family caregivers may be useful in supporting advance care planning (ACP). Using a user-centred design approach, we developed an ACP website for people with dementia and their families. This protocol describes how we will test and evaluate the ACP website. Publishing a study protocol can guide others who want to evaluate web-based tools. Moreover, the data collection methods used in this study are very innovative since they aim to involve people living with dementia without overburdening them. Methods: We will conduct an evaluation study of the ACP website in Flanders, Belgium, using a convergent parallel mixed methods pre-post-test design with continuous follow-up. Thirty eligible dyads of people with mild to moderate dementia (both early and late onset) and their family caregivers will use the website in their everyday life for 8 weeks. We will evaluate the usage, usability, acceptability, and feasibility of the website, as well as the experiences of users. Additionally, we evaluate the effects of using the website on ACP readiness, ACP knowledge, attitudes, perceived barriers to engage in ACP, self-efficacy and skills to engage in ACP. Results: Recruitment and data collection is foreseen between end of 2022 and 2023. Conclusion: This evaluation study of an ACP website for people with dementia and their family caregivers will be the first to evaluate how a web-based tool can support people living with dementia and their families in ACP. The strength of this study lies in the combination of interviews, surveys, and ongoing data logging, which provide insights into the use of support tools in people's daily context. We expect that recruiting people with dementia and their families will be difficult so we have set up a thorough strategy to reach the anticipated sample size.

Advance Care Planning Website for People With Dementia and Their Family Caregivers: Protocol for a Development and Usability Study.

BACKGROUND: Web-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration, given the sensitive topic and the specific needs of people with dementia and their families. OBJECTIVE: This paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families. METHODS: The development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire. RESULTS: This study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023. CONCLUSIONS: The methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46935.

Information on advance care planning on websites of dementia associations in Europe: A content analysis.

OBJECTIVE: To gain insight into the advance care planning (ACP) content provided on dementia associations' websites in Europe. METHODS: We conducted a content analysis of dementia associations' websites in Europe regarding ACP information, using deductive and inductive approaches and a reference framework derived from two ACP definitions. RESULTS: We included 26 dementia associations' websites from 20 countries and one European association, covering 12 languages. Ten websites did not mention ACP. The information on the remaining 16 varied in terms of themes addressed and amount of information. Four explicitly define ACP. Several websites made multiple references to legal frameworks (n = 10, 705 excerpts), choosing legal representatives (n = 12, 274 excerpts), and care and treatment preferences (n = 14, 89 excerpts); while themes such as communication with family (n = 9, 67 excerpts) and professionals (n = 9, 49 excerpts) or identifying personal values (n = 9, 73 excerpts) were mentioned on fewer websites or addressed in fewer excerpts. CONCLUSION: ACP content is non-existent in 10 out of 26 dementia associations' websites. On those that have ACP content, legal and medical themes were prominent. It would be beneficial to include more comprehensive ACP information stressing the importance of communication with families and professionals, in line with current ACP conceptualisations framing ACP as an iterative communication process, rather than a documentation-focused exercise.

Palliative care symptoms, concerns and well-being of older people with frailty and complex care needs upon hospital discharge: a cross-sectional study.

BACKGROUND: Little is known about the nature and intensity of palliative care needs of hospitalised older people. We aimed to describe the palliative care symptoms, concerns, and well-being of older people with frailty and complex care needs upon discharge from hospital to home, and to examine the relationship between palliative care symptoms and concerns, and well-being. METHODS: Cross-sectional study using baseline survey data of a pilot randomised controlled trial. Hospital staff identified patients (≥ 70 years) about to be discharged home, with a clinical frailty score of 5 to 7 and complex needs based on physician-assessment. Patients completed structured interviews, using the Integrated Palliative Care Outcome Scale (IPOS), ICEpop CAPability measure for supportive care (ICECAP-SCM) and IPOS Views on Care quality of life item. We calculated descriptive statistics. RESULTS: We assessed 37 older people with complex needs (49% women, mean age 84, standard deviation 6.1). Symptoms rated as causing severe problems were weakness (46%) and poor mobility (40%); 75% reported that their family felt anxious at least occasionally. Of the 17 IPOS items, 41% of patients rated five or more symptoms as causing severe problems, while 14% reported that they were not severely affected by any symptom. 87% expressed feeling supported. There was a negative correlation between symptoms (IPOS) and well-being (ICECAP); r = -0.41. CONCLUSION: We identified a large variety of symptoms experienced by older people identified as having frailty and complex needs upon hospital discharge. Many were severely affected by multiple needs. This population should be considered for palliative care follow-up at home.

Effects of a theory-based advance care planning intervention for nursing homes: A cluster randomized controlled trial.

BACKGROUND: Uptake of advance care planning in routine nursing home care is low. Through extensive literature review, theoretical development, and stakeholder involvement, we developed the ACP+ intervention. AIMS: To evaluate the effects of ACP+ on the knowledge and self-efficacy (confidence in own skills) of nursing home care staff concerning advance care planning. DESIGN: Cluster randomized controlled trial, conducted between February 2018 and January 2019 (NCT03521206, clinicaltrials.gov). ACP+ is a multicomponent intervention aimed at training and supporting nursing home staff and management in implementing advance care planning in nursing home practice through a train-the-trainer approach over 8 months. Fourteen nursing homes were randomized using a matched-pairing strategy, seven received ACP+, seven followed usual practice. Analyses (intention-to-treat) involved linear mixed models. SETTING/PARTICIPANTS: Nursing homes in Flanders (Belgium). RESULTS: 694 of 1017 care staff (68% response rate) at baseline and 491 of 989 care staff (50%) post-intervention (8 months) returned questionnaires. Post-intervention, care staff's self-efficacy concerning advance care planning was significantly higher in the intervention than in the control group (baseline-adjusted mean difference 0.57; 95% CI 0.20-0.94; p = 0.003; Cohen's d = 0.30). Advance care planning knowledge (95% CI 0.95-1.15; p = 0.339; ratio: 1.04) did not differ significantly between groups. CONCLUSIONS: The ACP+ intervention for nursing homes improved care staff's self-efficacy but not their knowledge concerning advance care planning. Considering the comprehensive and multi-component approach used, these effects were smaller than expected. Reasons for this may be related to the chosen follow-up period, outcomes and measurements, or to the intervention itself and its implementation.

Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review.

BACKGROUND: There is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature. OBJECTIVE: This study aims to conduct a systematic review of web-based ACP support tools to describe the characteristics, readability, and quality of content and investigate whether and how they are evaluated. METHODS: We systematically searched the web-based gray literature databases OpenGrey, ClinicalTrials.gov, ProQuest, British Library, Grey Literature in the Netherlands, and Health Services Research Projects in Progress, as well as Google and app stores, and consulted experts using the following eligibility criteria: web-based, designed for the general population, accessible to everyone, interactive (encouraging reflection, communication, and processing of information), and in English or Dutch. The quality of content was evaluated using the Quality Evaluation Scoring Tool (score 0-28-a higher score indicates better quality). To synthesize the characteristics of the ACP tools, readability and quality of content, and whether and how they were evaluated, we used 4 data extraction tables. RESULTS: A total of 30 tools met the eligibility criteria, including 15 (50%) websites, 10 (33%) web-based portals, 3 (10%) apps, and 2 (7%) with a combination of formats. Of the 30 tools, 24 (80%) mentioned a clear aim, including 7 (23%) that supported reflection or communication, 8 (27%) that supported people in making decisions, 7 (23%) that provided support to document decisions, and 2 (7%) that aimed to achieve all these aims. Of the 30 tools, 7 (23%) provided information on the development, all of which were developed in collaboration with health care professionals, and 3 (10%) with end users. Quality scores ranged between 11 and 28, with most of the lower-scoring tools not referring to information sources. CONCLUSIONS: A variety of ACP support tools are available on the web, varying in the quality of content. In the future, users should be involved in the development process of ACP support tools, and the content should be substantiated by scientific evidence. TRIAL REGISTRATION: PROSPERO CRD42020184112; https://tinyurl.com/mruf8b43.

Timely short-term specialized palliative care service intervention for older people with frailty and their family carers in primary care: Development and modelling of the frailty+ intervention using theory of change.

BACKGROUND: Palliative care is advocated for older people with frailty and multimorbidity in the community. However, how to best deliver it is unclear. AIM: To develop and model an intervention of short-term specialized palliative care that is initiated timely based on complex care needs and integrated with primary care for older people with frailty and their family, detailing the intervention components, outcomes and preconditions needed for implementation, using a novel theoretical approach. DESIGN: Observational study informed by the UK MRC guidance for complex interventions integrated with a Theory of Change (i.e. hypothetical causal pathway to impact) approach. We synthesized evidence from a systematic review, semi-structured interviews, group discussions and Theory of Change workshops. SETTING: Primary care in Flanders, Belgium. RESULTS: We identified patient and family carer-related long-term outcomes and preconditions to achieve them for example, service providers are willing and able to deliver the intervention. The intervention components included implementation components, for example, training for service providers, and a core component, that is, provision of timely short-term specialized palliative care by a specialized palliative home care nurse. The latter includes: short-term service delivery; collaborative and integrative working within primary care; delivery of holistic needs- and capacity-based care; person-centred and family-focussed; and goal-oriented pro-active care. CONCLUSIONS: The Theory of Change approach allowed us to identify multiple intervention components targeting different stakeholders to achieve the desired outcomes. It also facilitated a detailed description of the intervention which aims to increase replicability and effective comparisons with other interventions.

Advance care planning in nursing homes: new conversation and documentation tools.

Although advance care planning (ACP) is highly relevant for nursing home residents, its uptake in nursing homes is low. To meet the need for context-specific ACP tools to support nursing home staff in conducting ACP conversations, we developed the ACP+intervention. At its core, we designed three ACP tools to aid care staff in discussing and documenting nursing home resident's wishes and preferences for future treatment and care: (1) an extensive ACP conversation guide, (2) a one-page conversation tool and (3) an ACP document to record outcomes of conversations. These nursing home-specific ACP tools aim to avoid a purely document-driven or 'tick-box' approach to the ACP process and to involve residents, including those living with dementia according to their capacity, their families and healthcare professionals.

Changes in social, psychological and physical well-being in the last 5 years of life of older people with cancer: a longitudinal study.

BACKGROUND: older people with cancer are at risk of complex and fluctuating health problems, but little is known about the extent to which their well-being changes in the last years of life. OBJECTIVE: to examine changes in physical, psychological and social well-being in the last 5 years of life of older people with cancer. DESIGN: prospective cohort study. SETTING: Belgium, the Netherlands. PARTICIPANTS: people with a new primary diagnosis of breast, prostate, lung or gastrointestinal cancer, aged ≥70 years, life expectancy >6 months, were recruited from nine hospitals. We analysed data of deceased patients. METHODS: data were collected from participants around diagnosis, and after 6 months, 1, 3 and 5 years through structured questionnaires administered through interviews or as self-report. Outcomes were physical, emotional, social, role functioning (EORTC QLQ-C30), depressive symptoms (GDS-15), emotional and social loneliness (Loneliness Scale). We conducted linear mixed model analyses. RESULTS: analysing 225 assessments from 107 deceased participants (assessments took place between 1,813 and 5 days before death), mean age at baseline 77 years (standard deviation: 5.2), we found statistically significant deterioration in physical functioning (b = 0,016 [95%confidence interval 0.009-0.023]), depressive symptoms (b = -0,001 [-0.002 to 0.000]) and role functioning (b = 0.014 [0.004-0.024]). Changes over time in emotional and social functioning and in social and emotional loneliness were smaller and statistically non-significant. CONCLUSIONS: care towards the end of life for older people with cancer needs to put their social and psychological well-being at the centre, alongside physical needs. Future research should focus on understanding inter-individual variation in trajectories.

Differences in advance care planning among nursing home care staff.

BACKGROUND: A team-based approach has been advocated for advance care planning in nursing homes. While nurses are often put forward to take the lead, it is not clear to what extent other professions could be involved as well. OBJECTIVES: To examine to what extent engagement in advance care planning practices (e.g. conversations, advance directives), knowledge and self-efficacy differ between nurses, care assistants and allied care staff in nursing homes. DESIGN: Survey study. PARTICIPANTS/SETTING: The study involved a purposive sample of 14 nursing homes in Flanders, Belgium. Nurses, care assistants and allied care staff (e.g. social workers, physical therapists) completed a survey. ETHICAL CONSIDERATIONS: The study was approved by the University Hospital of Brussels (B.U.N. 143201834759), as part of a cluster randomized controlled trial (clinicaltrials.gov NCT03521206). RESULTS: One hundred ninety-six nurses, 319 care assistants and 169 allied staff participated (67% response rate). After adjusting for confounders, nurses were significantly more likely than care assistants to have carried out advance care planning conversations (odds ratio 4; 95% confidence interval 1.73-9.82; p < 0.001) and documented advance care planning (odds ratio 2.67; 95% confidence interval 1.29-5.56; p < 0.001); differences not found between allied staff and care assistants. Advance care planning knowledge total scores differed significantly, with nurses (estimated mean difference 0.13 (score range 0-1); 95% confidence interval 0.08-0.17; p < 0.001) and allied staff (estimated mean difference 0.07; 95% confidence interval 0.03-0.12; p < 0.001) scoring higher than care assistants. We found no significant differences regarding self-efficacy. DISCUSSION: While nursing home nurses conducted more advance care planning conversations and documentation than allied care staff and care assistants, these two professional groups may be a valuable support to nurses in conducting advance care planning, if provided with additional training. CONCLUSIONS: Allied care staff and care assistants, if trained appropriately, can be involved more strongly in advance care planning to enhance relational and individual autonomy of nursing home residents, alongside nurses. Future research to improve and implement advance care planning should consider this finding at the intervention development stage.

Timely short-term specialised palliative care service intervention for frail older people and their family carers in primary care: study protocol for a pilot randomised controlled trial.

INTRODUCTION: There is limited evidence regarding the effectiveness of timely integration of short-term specialised palliative care services for older people in primary care. Using a Theory of Change approach, we developed such an intervention, the Frailty+ intervention. We present the protocol of a pilot randomised controlled trial (RCT) with a process evaluation that aims to assess the feasibility and preliminary effectiveness of the Frailty+ intervention. METHODS AND ANALYSIS: We will conduct a pilot RCT in Flanders, Belgium. Frail older people who are discharged to home from hospital will be identified and recruited. Seventy-six will be randomly assigned either to the control group (standard care) or the intervention group (Frailty+ intervention alongside standard care). Data will be collected from patients and family carers. At the core of the Frailty+ intervention is the provision of timely short-term specialised palliative care facilitated by a nurse from the specialised palliative home care service over a period of 8 weeks. We will assess feasibility in terms of recruitment, randomisation, acceptability of the intervention, retention in the programme and data completion. The primary outcome for assessing preliminary effectiveness is a mean score across five key symptoms that are amenable to change (ie, breathlessness, pain, anxiety, constipation, fatigue), measured at baseline and 8 weeks post-baseline. The process evaluation will be conducted in the intervention group only, with measurements at 8-11 weeks post-baseline to evaluate implementation, mechanisms of change and contextual factors. ETHICS AND DISSEMINATION: The study has been approved by the ethics committee of University Hospital Ghent. Results will be used to inform the design of a full-scale RCT and will be published in a peer-reviewed, open access journal. TRIAL REGISTRATION NUMBER: ISRCTN39282347; Pre-results.

Inclusion of palliative care in health care policy for older people: A directed documentary analysis in 13 of the most rapidly ageing countries worldwide.

BACKGROUND: Palliative care is insufficiently integrated in the continuum of care for older people. It is unclear to what extent healthcare policy for older people includes elements of palliative care and thus supports its integration. AIM: (1) To develop a reference framework for identifying palliative care contents in policy documents; (2) to determine inclusion of palliative care in public policy documents on healthcare for older people in 13 rapidly ageing countries. DESIGN: Directed documentary analysis of public policy documents (legislation, policies/strategies, guidelines, white papers) on healthcare for older people. Using existing literature, we developed a reference framework and data extraction form assessing 10 criteria of palliative care inclusion. Country experts identified documents and extracted data. SETTING: Austria, Belgium, Canada, Czech Republic, England, Japan, Mexico, Netherlands, New Zealand, Singapore, Slovenia, South Korea, Spain. RESULTS: Of 139 identified documents, 50 met inclusion criteria. The most frequently addressed palliative care elements were coordination and continuity of care (12 countries), communication and care planning, care for family, and ethical and legal aspects (11 countries). Documents in 10 countries explicitly mentioned palliative care, nine addressed symptom management, eight mentioned end-of-life care, and five referred to existing palliative care strategies (out of nine that had them). CONCLUSIONS: Health care policies for older people need revising to include reference to end-of-life care and dying and ensure linkage to existing national or regional palliative care strategies. The strong policy focus on care coordination and continuity in policies for older people is an opportunity window for palliative care advocacy.