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Objectives: The End-of-Life Dementia-Comfort Assessment in Dying (EOLD-CAD) scale is one of the few outcome instruments designed to capture symptom burden and well-being among nursing home residents with dementia; however, psychometric evaluations of the EOLD-CAD are limited. Although the instrument is often used to assess outcomes prospectively, it was originally developed and tested as a postmortem assessment. The purpose of this study is to evaluate the instrument properties of the EOLD-CAD using staff reports from a large sample of nursing home residents with cognitive impairment prior to death., Methods: Using data from the multi-state UPLIFT clinical trial, this study evaluated the psychometric properties of the EOLD-CAD from 168 nursing home staff members reporting outcomes for 611 living residents with moderate to severe cognitive impairment. Staff also reported on resident quality-of-life using two different single item measures. We conducted confirmatory factor analysis (CFA) and assessed construct validity, inter-item reliability, and observer report bias., Results: CFA produced a four-factor solution. All factor loadings were > 0.40, ranging from 0.61-0.95 for Physical Distress, 0.71-0.91 for Dying Symptoms, 0.61-0.78 for Emotional Distress, and 0.89-0.94 for Well-Being. Model indices suggest a good fit to the data with root mean square error of approximation (RMSEA) = 0.053 (95% CI = (0.044, 0.062)), comparative fit index (CFI) = 0.971, and standardized root mean square residual (SRMR) = 0.093, with the SRMR slightly above the conventional threshold of > 0.08. Based on intraclass correlation coefficients (ICC), patterns of observer reports were identified among staff who provided data for multiple residents. ICCs were notably high (> 0.60) for Well-Being items. The EOLD-CAD elicited a Cronbach's alpha of 0.73, and the instrument was negatively correlated with items measuring resident quality of life., Conclusions: We found that when the EOLD-CAD was completed by nursing home staff familiar with the respective residents, observer-based patterns were detectable. Such patterns were adjusted for in our CFA, from we found that the EOLD-CAD exhibited multidimensionality with a four-factor structure capturing: Physical Distress, Emotional Distress, Dying Symptoms, and Well-Being. In addition to the CFA, the EOLD-CAD demonstrated generally valid and reliable psychometric properties in our population of long-stay nursing home residents with moderate to severe cognitive impairment., Trial Registration: ClinicalTrials.gov: NCT04520698., (© 2025 John Wiley & Sons Ltd.)

Background: We developed the ACP+ intervention to support nursing home staff with implementation of advance care planning. While ACP+ was found to improve staff's self-efficacy, it did not change their knowledge about advance care planning., Aim: To describe the level of implementation, mechanisms of impact, and contextual factors., Design: Process evaluation embedded in a cluster randomized controlled trial in nursing homes (NCT03521206). Throughout and immediately following the 8-month ACP+ implementation, we collected weekly diaries, post-training surveys, attendance records, facility data, and conducted interviews ( n  = 32). We applied descriptive statistics and thematic analysis., Setting and Participants: Management, staff, and ACP+ trainers in seven intervention homes., Results: Although most participants reported they valued ACP+, 33% of eligible staff across nursing homes attended training (range: 6%-69%) and only a few reported they felt ready to engage in actual care planning conversations. Half of all nursing homes adapted parts of the intervention (e.g., more/fewer/shortened training; assigning a coordinating role for practical management). Enough time to consolidate skills, and management support were key for staff engagement in advance care planning, and limited time and staff shortages were significant barriers. Staff reported increased awareness of the importance of advance care planning and felt there was a more systematic way of organizing advance care planning., Conclusions: There was limited staff engagement. Management ownership, clear roles, and collaborative practices may enhance nursing home advance care planning. Accessible and ongoing training for all staff, and ample practical learning opportunities are needed.

Purpose: Delivery of person-centered care (PCC) is the standard in nursing homes (NHs) and demonstrates a positive impact on resident quality of life (QOL). PCC inherently recognizes and prioritizes resident preferences; however, preferences, and their degree of importance among residents, demonstrate a variable relationship with QOL that remains underexplored. Therefore, the current study examined the association between preferences and QOL among NH residents., Method: A mixed methods study incorporating surveys was conducted among 144 residents, with semi-structured follow-up interviews with 11 residents., Results: Findings confirm a variable relationship between resident preferences and QOL. Higher order preferences not captured within the preference assessment may influence QOL. High numbers of unimportant and can't do / no choice preferences were linked to resident acclimatization to the NH. QOL was at risk if care was not consistent with preferences., Conclusion: In-depth assessments and robust measures of preferences and QOL should be integrated into care delivery and future research. [ Journal of Gerontological Nursing, 50 (5), 7-13.].

Objective: The global population is rapidly ageing. To tackle the increasing prevalence of older adults' chronic conditions, loss of intrinsic capacity and functional ability, long-term care interventions are required. The study aim was to identify long-term care interventions reported in scientific literature from 2010 to 2020 and categorise them in relation to WHO's public health framework of healthy ageing., Design: Scoping review conducted on PubMed, CINHAL, Cochrane and Google Advanced targeting studies reporting on long-term care interventions for older and frail adults. An internal validated Excel matrix was used for charting.Setting nursing homes, assisted care homes, long-term care facilities, home, residential houses for the elderly and at the community., Inclusion Criteria: Studies published in peer-reviewed journals between 1 January 2010 to 1 February 2020 on implemented interventions with outcome measures provided in the settings mentioned above for subjects older than 60 years old in English, Spanish, German, Portuguese or French., Results: 305 studies were included. Fifty clustered interventions were identified and organised into four WHO Healthy Ageing domains and 20 subdomains. All interventions delved from high-income settings; no interventions from low-resource settings were identified. The most frequently reported interventions were multimodal exercise (n=68 reports, person-centred assessment and care plan development (n=22), case management for continuum care (n=16), multicomponent interventions (n=15), psychoeducational interventions for caregivers (n=13) and interventions mitigating cognitive decline (n=13)., Conclusion: The identified interventions are diverse overarching multiple settings and areas seeking to prevent, treat and improve loss of functional ability and intrinsic capacity. Interventions from low-resource settings were not identified., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: PACE Steps to Success is a 1-year train-the-trainer program aiming to integrate nonspecialist palliative care into nursing homes via staff education and organizational support. In this study, we aimed to explore whether this program resulted in changes in residents' hospital use and place of death., Design: Secondary analysis of the PACE cluster randomized controlled trial (ISRCTN14741671). Data were collected on deaths over the previous 4 months via questionnaires at baseline and postintervention., Setting and Participants: Questionnaires were completed by the nurse/care-assistant most involved from 78 nursing homes in 7 European Union countries., Measures: We measured number of emergency department visits, hospital admissions, length of hospital stay, and place of death. Baseline and postintervention scores between intervention and control groups were compared, and we conducted exploratory mixed-model analyses. We collected 551 out of 610 questionnaires at baseline and 984 out of 1178 at postintervention in 37 intervention and 36 control homes., Results: We found no statistical significant effects of the program on emergency department visits [odds ratio (OR) = 1.38, P = .32], hospital admissions (OR = 0.98, P = .93), length of hospital stay (geometric mean difference = 0.85, P = .44), or place of death (OR = 1.08, P = .80)., Conclusions and Implications: We found no effect of the PACE program on either hospital use in the last month of life or place of death. Although this may be related to implementation problems in some homes, the program might also require a more specific focus on managing acute end-of-life situations and a closer involvement of general practitioners or specialist palliative care services to influence hospital use or place of death., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. All rights reserved.)

Background: The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefore, the objective of this paper was to assess the cost-effectiveness of the 'PACE Steps to Success' intervention. PACE (Palliative Care for Older People) is a 1-year palliative care programme aiming at integrating general palliative care into day-to-day routines in LTCFs, throughout seven EU countries., Methods: A cluster RCT was conducted. LTCFs were randomly assigned to intervention or usual care. LTCFs reported deaths of residents, about whom questionnaires were filled in retrospectively about resource use and quality of the last month of life. A health care perspective was adopted. Direct medical costs, QALYs based on the EQ-5D-5L and costs per quality increase measured with the QOD-LTC were outcome measures., Results: Although outcomes on the EQ-5D-5L remained the same, a significant increase on the QOD-LTC (3.19 points, p value 0.00) and significant cost-savings were achieved in the intervention group (€983.28, p value 0.020). The cost reduction mainly resulted from decreased hospitalization-related costs (€919.51, p value 0.018)., Conclusions: Costs decreased and QoL was retained due to the PACE Steps to Success intervention. Significant cost savings and improvement in quality of end of life (care) as measured with the QOD-LTC were achieved. A clinically relevant difference of almost 3 nights shorter hospitalizations in favour of the intervention group was found. This indicates that timely palliative care in the LTCF setting can prevent lengthy hospitalizations while retaining QoL. In line with earlier findings, we conclude that integrating general palliative care into daily routine in LTCFs can be cost-effective., Trial Registration: ISRCTN14741671 .

COVID-19 mortality disproportionally affects nursing homes, creating enormous pressures to deliver high-quality end-of-life care. Comprehensive palliative care should be an explicit part of both national and global COVID-19 response plans. Therefore, we aimed to identify, review, and compare national and international COVID-19 guidance for nursing homes concerning palliative care, issued by government bodies and professional associations. We performed a directed documentary and content analysis of newly developed or adapted COVID-19 guidance documents from across the world. Documents were collected via expert consultation and independently screened against prespecified eligibility criteria. We applied thematic analysis and narrative synthesis techniques. We identified 21 eligible documents covering both nursing homes and palliative care, from the World Health Organization (n = 3), and eight individual countries: U.S. (n = 7), The Netherlands (n = 2), Ireland (n = 1), U.K. (n = 3), Switzerland (n = 3), New Zealand (n = 1), and Belgium (n = 1). International documents focused primarily on infection prevention and control, including only a few sentences on palliative care-related topics. Palliative care themes most frequently mentioned across documents were end-of-life visits, advance care planning documentation, and clinical decision making toward the end of life (focusing on hospital transfers). There is a dearth of comprehensive international COVID-19 guidance on palliative care for nursing homes. Most have a limited focus both regarding breadth of topics and recommendations made. Key aspects of palliative care, that is, symptom management, staff education and support, referral to specialist services or hospice, and family support, need greater attention in future guidelines., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. All rights reserved.)

Background: End-of-life care in nursing homes holds several risk factors for the use of physical restraints on residents, a practice shown to be neither safe nor effective., Objectives: To determine the frequency of physical limb and/or trunk restraint use in the last week of life of nursing home residents in six European countries and its association with country, resident and nursing home characteristics., Design: Epidemiological survey study., Setting: Proportionally stratified random sample of nursing homes in Belgium (BE), England (ENG), Finland (FI), Italy (IT), the Netherlands (NL), and Poland (PL)., Participants: Nursing home staff (nurses or care assistants)., Methods: In all participating nursing homes, we identified all residents who died during the three months prior to measurements. The staff member most involved in each resident's care indicated in a structured questionnaire whether trunk and/or limb restraints were used on that resident during the last week of life 'daily', 'less frequently than daily' or 'not used'., Results: In 322 nursing homes, staff returned questionnaires regarding 1384 deceased residents (response rate 81%). Limb and/or trunk restraints were used "daily" in the last week of life in 8% (BE), 1% (ENG), 4% (FI), 12% (IT), 0% (NL), and 0.4% (PL) of residents; and "less frequently than daily" in 4% (BE), 0% (ENG), 0.4% (FI), 6% (IT), 0% (NL), and 3.5% (PL) of residents. Restraint use was associated with country (p = 0.020) and inversely associated with residents' age (p = 0.017; odds ratio 0.96, 95% confidence interval 0.93 to 0.99). Restraint use was not significantly associated with resident's gender, dementia, functional status, staffing level, or the level of dependency of residents within the nursing home., Conclusions: In all but one of the six countries studied, staff reported that nursing home residents were restrained through limb and/or trunk restraints in the last week of life. The proportion of restrained residents was highest in Italy and Belgium. Organizational and resident characteristics may not be relevant predictors of restraint use at the end of life in this setting. National policy that explicitly discourages physical restraints in nursing home care and suggests alternative practices may be an important component of strategies to prevent their use., (Copyright © 2019. Published by Elsevier Ltd.)

Objectives: This paper aims to investigate resident, facility and country characteristics associated with length of stay in long-term care facilities (LTCFs) across six European countries., Setting: Data from a cross-sectional study of deceased residents, conducted in LTCFs in Belgium, England, Finland, Italy, the Netherlands and Poland., Participants: All residents aged 65 years and older at admission who died in a 3-month period residing in a proportional random sample of LTCFs were included., Primary and Secondary Outcome Measures: The primary outcome was length of stay in days, calculated from date of admission and date of death. Resident, facility and country characteristics were included in a proportional hazards model., Results: The proportion of deaths within 1 year of admission was 42% (range 32%-63%). Older age at admission (HR 1.04, 95% CI 1.03 to 1.06), being married/in a civil partnership at time of death (HR 1.47, 95% CI 1.13 to 1.89), having cancer at time of death (HR 1.60, 95% CI 1.22 to 2.10) and admission from a hospital (HR 1.84, 95% CI 1.43 to 2.37) or another LTCF (HR 1.81, 95% CI 1.37 to 2.40) were associated with shorter lengths of stay across all countries. Being female (HR 0.72, 95% CI 0.57 to 0.90) was associated with longer lengths of stay., Conclusions: Length of stay varied significantly between countries. Factors prior to LTCF admission, in particular the availability of resources that allow an older adult to remain living in the community, appear to influence length of stay. Further research is needed to explore the availability of long-term care in the community prior to admission and its influence on the trajectories of LTCF residents in Europe., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Importance: High-quality evidence on how to improve palliative care in nursing homes is lacking., Objective: To investigate the effect of the Palliative Care for Older People (PACE) Steps to Success Program on resident and staff outcomes., Design, Setting, and Participants: A cluster-randomized clinical trial (2015-2017) in 78 nursing homes in 7 countries comparing PACE Steps to Success Program (intervention) with usual care (control). Randomization was stratified by country and median number of beds in each country in a 1:1 ratio., Interventions: The PACE Steps to Success Program is a multicomponent intervention to integrate basic nonspecialist palliative care in nursing homes. Using a train-the-trainer approach, an external trainer supports staff in nursing homes to introduce a palliative care approach over the course of 1 year following a 6-steps program. The steps are (1) advance care planning with residents and family, (2) assessment, care planning, and review of needs and problems, (3) coordination of care via monthly multidisciplinary review meetings, (4) delivery of high-quality care focusing on pain and depression, (5) care in the last days of life, and (6) care after death., Main Outcomes and Measures: The primary resident outcome was comfort in the last week of life measured after death by staff using the End-of-Life in Dementia Scale Comfort Assessment While Dying (EOLD-CAD; range, 14-42). The primary staff outcome was knowledge of palliative care reported by staff using the Palliative Care Survey (PCS; range, 0-1)., Results: Concerning deceased residents, we collected 551 of 610 questionnaires from staff at baseline and 984 of 1178 postintervention in 37 intervention and 36 control homes. Mean (SD) age at time of death ranged between 85.22 (9.13) and 85.91 (8.57) years, and between 60.6% (160/264) and 70.6% (190/269) of residents were women across the different groups. Residents' comfort in the last week of life did not differ between intervention and control groups (baseline-adjusted mean difference, -0.55; 95% CI, -1.71 to 0.61; P = .35). Concerning staff, we collected 2680 of 3638 questionnaires at baseline and 2437 of 3510 postintervention in 37 intervention and 38 control homes. Mean (SD) age of staff ranged between 42.3 (12.1) and 44.1 (11.7) years, and between 87.2% (1092/1253) and 89% (1224/1375) of staff were women across the different groups. Staff in the intervention group had statistically significantly better knowledge of palliative care than staff in the control group, but the clinical difference was minimal (baseline-adjusted mean difference, 0.04; 95% CI, 0.02-0.05; P < .001). Data analyses began on April 20, 2018., Conclusions and Relevance: Residents' comfort in the last week of life did not improve after introducing the PACE Steps to Success Program. Improvements in staff knowledge of palliative care were clinically not important., Trial Registration: ISRCTN Identifier: ISRCTN14741671.

Background: The PACE 'Steps to Success' programme is a complex educational and development intervention for staff to improve palliative care in long-term care facilities (LTCFs). In a cluster randomized controlled trial, this programme has been implemented in 37 LTCFs in 7 European countries. Alongside an effectiveness study, a process evaluation study was conducted. This paper reports on the results of this process evaluation, of which the aim was to provide a more detailed understanding of the implementation of the PACE Programme across and within countries., Methods: The process evaluation followed the Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) framework and involved various measures and tools, including diaries for country trainers, evaluation questionnaires for care staff, attendance lists and interviews (online and face-to-face, individual and in groups) with country trainers, managers, PACE coordinators and other staff members. Based on key elements of the PACE Programme, a priori criteria for a high, medium and low level of the RE-AIM components Reach, Adoption, Implementation and intention to Maintenance were defined. Qualitative data on factors affecting each RE-AIM component gathered in the online discussion groups and interviews were analysed according to the principles of thematic analysis., Results: The performance of the PACE Programme on the RE-AIM components was highly variable within and across countries, with a high or medium score for in total 28 (out of 37) LTCFs on Reach, for 26 LTCFs on Adoption, for 35 LTCFs on Implementation and for 34 LTCFs on intention to Maintenance. The factors affecting performance on the different RE-AIM components could be classified into three major categories: (1) the PACE Programme itself and its way of delivery, (2) people working with the PACE Programme and (3) contextual factors. Several country-specific challenges in implementing the PACE Programme were identified., Conclusions: The implementation of the PACE Programme was feasible but leaves room for improvement. Our analysis helps to better understand the optimal levels of training and facilitation and provides recommendations to improve implementation in the LTC setting. The results of the process evaluation will be used to further adapt and improve the PACE Programme prior to its further dissemination., Trial Registration: The PACE study was registered at www.isrctn.com-ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) July 30, 2015.

Background: The PACE Steps to Success programme is a complex educational and development intervention to improve palliative care in nursing homes. Little research has investigated processes in the cross-cultural adaptation and implementation of interventions in palliative care across countries, taking account of differences in health and social care systems, legal and regulatory policies, and cultural norms. This paper describes a framework for the cross-cultural development and support necessary to implement such an intervention, taking the PACE Steps to Success programme as an exemplar., Methods: The PACE Steps to Success programme was implemented as part of the PACE cluster randomised control trial in seven European countries. A three stage approach was used, a) preparation of resources; b) training in the intervention using a train-the-trainers model; and c) cascading support throughout the implementation. All stages were underpinned by cross-cultural adaptation, including recognising legal and cultural norms, sensitivities and languages. This paper draws upon collated evidence from minutes of international meetings, evaluations of training delivered, interviews with those delivering the intervention in nursing homes and providing and/or receiving support., Results: Seventy eight nursing homes participated in the trial, with half randomized to receive the intervention, 3638 nurses/care assistants were identified at baseline. In each country, 1-3 trainers were selected (total n = 16) to deliver the intervention. A framework was used to guide the cross-cultural adaptation and implementation. Adaptation of three English training resources for different groups of staff consisted of simplification of content, identification of validated implementation tools, a review in 2 nursing homes in each country, and translation into local languages. The same training was provided to all country trainers who cascaded it into intervention nursing homes in local languages, and facilitated it via in-house PACE coordinators. Support was cascaded from country trainers to staff implementing the intervention., Conclusions: There is little guidance on how to adapt complex interventions developed in one country and language to international contexts. This framework for cross-cultural adaptation and implementation of a complex educational and development intervention may be useful to others seeking to transfer quality improvement initiatives in other contexts.

Background: While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice., Objectives: We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner., Design: To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling., Setting and Participants: Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer., Methods: The work was carried out by means of 1) operationalization of key intervention components-identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes-into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis., Results: The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning., Conclusions: The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice., Competing Interests: The authors have declared that no competing interests exist.

Background: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed., Aim: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care., Design: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses., Setting/participants: Nurses or care assistants who are most involved in care for the resident., Results: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%-Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provided by the treating physician (England: 75%-the Netherlands: 98.8%). A palliative care specialist was frequently involved in Belgium and Poland (57.1% and 86.7%). Residents with cancer, dementia or a contact person in their record more often received palliative care, and it started earlier for residents with whom the nurse had spoken about treatments or the preferred course of care at the end of life., Conclusion: The late initiation of palliative care (especially when advance care planning is lacking) and palliative care for residents without cancer, dementia or closely involved relatives deserve attention in all countries. Diversity in palliative care organization might be related to different levels of its development.

Background: By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nationally representative empirical data, either demographic or clinical, about people who die in long-term care facilities makes appropriate policy responses more difficult. Additionally, there is a lack of comparable cross-country data; the opportunity to compare and contrast data internationally would allow for a better understanding of both common issues and country-specific challenges and could help generate hypotheses about different options regarding policy, health care organization and provision. The objectives of this study are to describe the demographic, facility stay and clinical characteristics of residents dying in long-term care facilities and the differences between countries., Methods: Epidemiological study (2015) in a proportionally stratified random sample of 322 facilities in Belgium, Finland, Italy, the Netherlands, Poland and England. The final sample included 1384 deceased residents. The sampled facilities received a letter introducing the project and asking for voluntary participation. Facility manager, nursing staff member and treating physician completed structured questionnaires for all deaths in the preceding 3 months., Results: Of 1384 residents the average age at death ranged from 81 (Poland) to 87 (Belgium, England) (p < 0.001) and length of stay from 6 months (Poland, Italy) to 2 years (Belgium) (p < 0.05); 47% (the Netherlands) to 74% (Italy) had more than two morbidities and 60% (England) to 83% (Finland) dementia, with a significant difference between countries (p < 0.001). Italy and Poland had the highest percentages with poor functional and cognitive status 1 month before death (BANS-S score of 21.8 and 21.9 respectively). Clinical complications occurred often during the final month (51.9% England, 66.4% Finland and Poland)., Conclusions: The population dying in long-term care facilities is complex, displaying multiple diseases with cognitive and functional impairment and high levels of dementia. We recommend future policy should include integration of high-quality palliative and dementia care.

Objective: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challenging and often underreported. This paper draws on the experiences of the PACE study, a cross sectional mortality follow back study conducted in six European countries., Results: Multiple challenges were encountered in creating a sampling framework and contacting, recruiting and retaining care homes in the PACE study. Recruiting a randomly identified, representative cohort from a stratified sampling framework was problematic, as was engaging with care homes to ensure high response rates. Variation in the funding of care homes across the six countries involved in the study may explain the additional challenges encountered in England. Awareness of the challenges encountered in England in implementing an international study in care homes can inform the design and implementation of future studies within care homes. Further discussion is needed to determine the barriers and facilitators to conducting research in care homes, and how this is shaped by the focus of the study.

Objectives: To describe the relation between physician visits and physicians' recognition of a resident's terminal phase in long-term care facilities (LTCFs) in Belgium, England, Finland, Italy, the Netherlands, and Poland., Design: In each country, a cross-sectional study was conducted across representative samples of LTCFs. Participating LTCFs reported all deaths of residents in the previous 3 months, and structured questionnaires were sent to several proxy respondents including the treating physician., Setting and Participants: 1094 residents in 239 LTCFs, about whom 505 physicians returned the questionnaire., Measures: Number of physician visits, the resident's main treatment goal, whether physicians recognized the resident's terminal phase and expected the resident's death, and resident and physician characteristics., Results: The number of physician visits to residents varied widely between countries, ranging from a median of 15 visits in the last 3 months of life in Poland to 5 in England, and from 4 visits in the last week of life in the Netherlands to 1 in England. Among all countries, physicians from Poland and Italy were least inclined to recognize that the resident was in the terminal phase (63.0% in Poland compared to 80.3% in the Netherlands), and residents in these countries had palliation as main treatment goal the least (31.8% in Italy compared to 92.6% in the Netherlands). Overall however, there were positive associations between the number of physician visits and the recognition of the resident's terminal phase and between the number of physician visits and the resident having palliation as main treatment goal in the last week of life., Conclusions and Implications: This study suggests that LTCFs should be encouraged to work collaboratively with physicians to involve them as much as possible in caring for their residents. Joint working will facilitate the recognition of a resident's terminal phase and the timely provision of palliative care., (Copyright © 2018 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Nursing homes are among the most common places of death in many countries., Aim: To determine the quality of dying and end-of-life care of nursing home residents in six European countries., Design: Epidemiological survey in a proportionally stratified random sample of nursing homes. We identified all deaths of residents of the preceding 3-month period. Main outcomes: quality of dying in the last week of life (measured using End-of-Life in Dementia Scales - Comfort Assessment while Dying (EOLD-CAD)); quality of end-of-life care in the last month of life (measured using Quality of Dying in Long-Term Care (QoD-LTC) scale). Higher scores indicate better quality., Setting/participants: Three hundred and twenty-two nursing homes in Belgium, Finland, Italy, the Netherlands, Poland and England. Participants were staff (nurses or care assistants) most involved in each resident's care., Results: Staff returned questionnaires regarding 1384 (81.6%) of 1696 deceased residents. The End-of-Life in Dementia Scales - Comfort Assessment while Dying mean score (95% confidence interval) (theoretical 14-42) ranged from 29.9 (27.6; 32.2) in Italy to 33.9 (31.5; 36.3) in England. The Quality of Dying in Long-Term Care mean score (95% confidence interval) (theoretical 11-55) ranged from 35.0 (31.8; 38.3) in Italy to 44.1 (40.7; 47.4) in England. A higher End-of-Life in Dementia Scales - Comfort Assessment while Dying score was associated with country ( p = 0.027), older age ( p = 0.012), length of stay ⩾1 year ( p = 0.034), higher functional status ( p < 0.001). A higher Quality of Dying in Long-Term Care score was associated with country ( p < 0.001), older age ( p < 0.001), length of stay ⩾1 year ( p < 0.001), higher functional status ( p = 0.002), absence of dementia ( p = 0.001), death in nursing home ( p = 0.033)., Conclusion: The quality of dying and quality of end-of-life care in nursing homes in the countries studied are not optimal. This includes countries with high levels of palliative care development in nursing homes such as Belgium, the Netherlands and England.

Background: The provision of high-quality palliative care in nursing homes (NHs) is a major challenge and places demands on the knowledge and skills of the staff., Aim: This study assesses the palliative care knowledge of staff in NHs in Europe., Design: Cross-sectional study using structured survey Setting/participants: Nurses and care assistants working in 322 representative samples of NHs in Belgium, the Netherlands, England, Finland, Poland and Italy. Palliative care knowledge is measured with the Palliative Care Survey. Scores on the scales range between 0 and 1; higher scores indicate more knowledge., Results: A total of 3392 NH-staff were given a questionnaire, and 2275 responded (67%). Knowledge of basic palliative care issues ranged between 0.20 in Poland (95% confidence interval (CI) 0.19; 0.24) and 0.61 in Belgium (95% CI 0.59; 0.63), knowledge of physical aspects that can contribute to pain ranged between 0.81 in Poland (95% CI 0.79; 0.84) and 0.91 in the Netherlands (95% CI 0.89; 0.93), and knowledge of psychological reasons that can contribute to pain ranged between 0.56 in England (95% CI 0.50; 0.62) and 0.87 in Finland (95% CI 0.83; 0.90). Factors associated with knowledge were country, professional role and having undertaken formal training in palliative care., Conclusions: Knowledge of nurses and care assistants concerning basic palliative care issues appears to be suboptimal in all participating countries, although there is substantial heterogeneity. Education of nursing staff needs to be improved across, but each country may require its own strategy to address the unique and specific knowledge gaps.

Background: Advance care planning (ACP) has been identified as particularly relevant for nursing home residents, but it remains unclear how or under what circumstances ACP works and can best be implemented in such settings. We aimed to develop a theory that outlines the hypothetical causal pathway of ACP in nursing homes, i.e. what changes are expected, by means of which processes and under what circumstances., Methods: The Theory of Change approach is a participatory method of programme design and evaluation whose underlying intention is to improve understanding of how and why a programme works. It results in a Theory of Change map that visually represents how, why and under what circumstances ACP is expected to work in nursing home settings in Belgium. Using this approach, we integrated the results of two workshops with stakeholders (n = 27) with the results of a contextual analysis and a systematic literature review., Results: We identified two long-term outcomes that ACP can achieve: to improve the correspondence between residents’ wishes and the care/treatment they receive and to make sure residents and their family feel involved in planning their future care and are confident their care will be according to their wishes. Besides willingness on the part of nursing home management to implement ACP and act accordingly, other necessary preconditions are identified and put in chronological order. These preconditions serve as precursors to, or requirements for, accomplishing successful ACP. Nine original key intervention components with specific rationales are identified at several levels (resident/family, staff or nursing home) to target the preconditions: selection of a trainer, ensuring engagement by management, training ACP reference persons, in-service education for healthcare staff, information for staff, general practitioners, residents and their family, ACP conversations and documentation, regular reflection sessions, multidisciplinary meetings, and formal monitoring., Onclusions: The Theory of Change map presented here illustrates a theory of how ACP is expected to work in order to achieve its desired long-term outcomes while highlighting organisational factors that potentially facilitate the implementation and sustainability of ACP. We provide the first comprehensive rationale of how ACP is expected to work in nursing homes, something that has been called for repeatedly.

Background: In the last year of life, many older people rather avoid admissions to inpatient care facilities. We describe and compare such admissions in the last year of life of 5092 community-dwelling older people in 15 European countries (+Israel)., Methods: Proxy-respondents of the older people, who participated in the longitudinal SHARE study, reported on admissions to inpatient care facilities (hospital, nursing home or hospice) during the last year of their life. Multivariable regression analyses assessed associations between hospitalizations and personal/contextual characteristics., Results: The proportion of people who had been admitted at least once to an inpatient care facility in the last year of life ranged from 54% (France) to 76% (Austria, Israel, Slovenia). Admissions mostly concerned hospitalizations. Multivariable analyses showed that especially Austrians, Israelis and Poles had higher chances of being hospitalized. Further, hospitalizations were more likely for those being ill for 6 months or more (OR:1.67, CI:1.39-2.01), and less likely for persons aged 80+ (OR:0.54, CI:0.39-0.74; compared with 48-65 years), females (OR:0.74, CI:0.63-0.89) and those dying of cardiovascular diseases (OR:0.66, CI:0.51-0.86; compared with those dying of cancer)., Conclusions: Although healthcare policies increasingly stress the importance that people reside at home as long as possible, admissions to inpatient care facilities in the last year of life are relatively common across all countries. Furthermore, we found a striking variation concerning the proportion of admissions across countries which cannot only be explained by patient needs. It suggests that such admissions are at least partly driven by system-level or cultural factors., (© The Author 2017. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.)

Background: The provision of institutional long-term care for older people varies across Europe reflecting different models of health care delivery. Care for dying residents requires integration of palliative care into current care work, but little is known internationally of the different ways in which palliative care is being implemented in the care home setting., Objectives: To identify and classify, using a new typology, the variety of different strategic, operational, and organizational activities related to palliative care implementation in care homes across Europe., Design and Methods: We undertook a mapping exercise in 29 European countries, using 2 methods of data collection: (1) a survey of country informants, and (2) a review of data from publically available secondary data sources and published research. Through a descriptive and thematic analysis of the survey data, we identified factors that contribute to the development and implementation of palliative care into care homes at different structural levels. From these data, a typology of palliative care implementation for the care home sector was developed and applied to the countries surveyed., Results: We identified 3 levels of palliative care implementation in care homes: macro (national/regional policy, legislation, financial and regulatory drivers), meso (implementation activities, such as education, tools/frameworks, service models, and research), and micro (palliative care service delivery). This typology was applied to data collected from 29 European countries and demonstrates the diversity of palliative care implementation activity across Europe with respect to the scope, type of development, and means of provision. We found that macro and meso factors at 2 levels shape palliative care implementation and provision in care homes at the micro organizational level., Conclusions: Implementation at the meso and micro levels is supported by macro-level engagement, but can happen with limited macro strategic drivers. Ensuring the delivery of consistent and high-quality palliative care in care homes is supported by implementation activity at these 3 levels. Understanding where each country is in terms of activity at these 3 levels (macro, meso, and micro) will allow strategic focus on future implementation work in each country., (Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: There is growing evidence of the potential effectiveness of advance care planning. Yet important knowledge gaps remain regarding the preconditions for successful implementation of advance care planning in the nursing home setting. We aim to identify the preconditions related to successful advance care planning in the nursing home setting. By specifying those, we would be able to make well-founded choices for the future design and planning of advance care planning intervention programs., Design: A systematic review., Data Sources: PubMed, PsycINFO, EMBASE and CINAHL., Review Methods: Two authors independently screened publications. One author assessed methodological quality and extracted textual data, which was double-checked for a random sample. We extracted textual data and used thematic synthesis to identify "preconditions", defined as requirements, conditions and elements necessary to achieve the desired outcome of advance care planning, i.e. attaining concordance between residents' preferences and actual care or treatment received at the end of life., Main Findings: Based on 38 publications, we identified 17 preconditions at five different levels: resident, family, health-care professional, facility and community. Most preconditions were situated on multiple levels but the majority addressed professionals and the nursing home itself. We summarized preconditions in five domains: to have sufficient knowledge and skills, to be willing and able to participate in advance care planning, to have good relationships, to have an administrative system in place, and contextual factors supporting advance care planning within the nursing home., Conclusion: There are multiple preconditions related to successfully implementing advance care planning in the complex nursing home setting that operate at micro, meso and macro level. Future interventions need to address these multiple domains and levels in a whole-system approach in order to be better implementable and more sustainable, while simultaneously target the important role of the health-care professional and the facility itself., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Objectives: Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level., Design and Methods: To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes., Conclusion: Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes., (Copyright © 2016 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: discussing end-of-life issues with nursing home residents and their relatives is needed to ensure patient-centred care near the end of life., Objectives: this study aimed to estimate the frequency of nursing home physicians discussing end-of-life issues with residents and their relatives and to investigate how discussing end-of-life issues was associated with care outcomes in the last month of life., Methods: post-mortem cohort study in a nationwide, representative sample of 78 nursing home facilities in France. Residents who died from non-sudden causes between 1 October 2013 and 31 May 2014 in these facilities were included (n = 674)., Results: end-of-life issues were discussed with at most 21.7% of the residents who died during the study period. In one-third of the situations (32.8%), no discussion about end-of-life-related topics ever occurred, either with the resident or with the relatives. Older people with severe dementia were less likely to have discussed more than three of the six end-of-life topics we investigated, compared with residents without dementia (OR = 0.17, 95% CI = 0.08-0.22). In the last month of life, discussing more than three end-of-life issues with the residents or their relatives was significantly associated with reduced odds of dying in a hospital facility (adjusted OR = 0.51, 95% CI = 0.33-0.79) and with a higher likelihood of withdrawing potentially futile life-prolonging treatments (adjusted OR = 2.37, 95% CI = 1.72-3.29)., Conclusion: during the last months of life, discussions about end-of-life issues occurred with only a minority of nursing home decedents, although these discussions may improve end-of-life care outcomes., (© The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.)

Background: The proportion of older people is increasing, therefore their place of residence and place of care at the end of life are becoming increasingly important., Aim: To compare aspects of end-of-life care among older people in residential homes and home settings in the Netherlands., Design and Setting: Nationwide representative mortality follow-back study among GPs in the Netherlands., Method: The study included patients aged ≥65 years who died non-suddenly, whose longest place of residence in their last year of life was at home or in a residential home (n = 498). Differences were analysed using Pearson's χ(2) test, Mann-Whitney U tests, and multivariate logistic regression., Results: Controlling for the differences between the populations in home settings and residential homes, no differences were found in treatment goals, communication about end-of-life care, or use of specialised palliative care between the two settings. However, people living in a residential home were more likely to have received palliative care from a GP than people living at home (OR 2.84, 95% confidence interval [CI] = 1.41 to 5.07). In residential homes, people more often experienced no transfer between care settings (OR 2.76, 95% CI = 1.35 to 5.63) and no hospitalisations (OR 2.2, 95% CI = 1.04 to 4.67) in the last 3 months of life, and died in hospital less often (OR 0.78, 95% CI = 0.63 to 0.97) than those people living at home., Conclusion: Despite similar treatment goals, care in residential homes seems more successful in avoiding transfers and hospitalisation at the end of life. Especially since older people are encouraged to stay at home longer, measures should be taken to ensure they are not at higher risk of transfers and hospitalisations in this setting., (© British Journal of General Practice 2015.)

Context: Although dying peacefully is considered an important outcome of high-quality palliative care, large-scale quantitative research on dying peacefully and the factors associated with a peaceful death is lacking., Objectives: To gain insight into how many residents with dementia in long-term care facilities die peacefully, according to their relatives, and whether that assessment is correlated with observed physical and psychological distress., Methods: This was a retrospective cross-sectional study of deceased nursing home residents in a representative sample of long-term care facilities in Flanders, Belgium (2010). Structured post-mortem questionnaires were completed by relatives of the resident, who were asked to what extent they agreed that the resident "appeared to be at peace" during the dying process. Spearman correlation coefficients gave the correlations between physical and psychological distress (as measured using the Symptom Management at the End of Life with Dementia and Comfort Assessment in Dying at the End of Life with Dementia scales) and dying peacefully (as measured using the Quality of Dying in Long Term Care instrument)., Results: The sample comprised 92 relatives of deceased residents with dementia. In 54% of cases, relatives indicated that the resident died peacefully. Weak-to-moderate correlations (0.2-0.57) were found between dying peacefully and physical distress in the last week of life. Regarding psychological distress, weak-to-moderate correlations were found for both the last week (0.33-0.44) and last month of life (0.28-0.47)., Conclusion: Only half of the residents with dementia died peacefully as perceived by their relatives. Relatives' assessment of whether death was peaceful is related to both physical and psychological distress. Further qualitative research is recommended to gain more in-depth insights into the aspects on which relatives base their judgment of dying peacefully., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care., Aim: To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness., Design: Post-death study using random cluster sampling., Setting/participants: Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010)., Results: Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94)., Conclusion: Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents., (© The Author(s) 2014.)

Background: Hospitalizations of nursing home residents with dementia may not be uncommon. However, evidence from epidemiological studies outside the United States and knowledge about the circumstances of hospitalizations are lacking., Aim: To examine the proportion of nursing home residents with dementia hospitalized in the last month of life and factors associated with hospitalization., Design: The design is stratified cluster sampling survey. Nurses retrospectively registered demographic and dementia-related information about deceased residents with dementia. This included information about hospitalizations, persons involved in hospitalization decisions and type and content of information transferred when hospitalized., Setting/participants: Nursing home residents dying with dementia in Belgium (Flanders) in 2010., Results: In the final month of life, 19.5% of nursing home residents dying with dementia (N = 198) were hospitalized, including 4.6% admitted to an intensive care unit. For 12.2% of residents dying with dementia, a do-not-hospitalize advance directive was present, for 57.0%, a do-not-hospitalize general physician-order. Residents without a do-not-hospitalize general physician-order were more likely of being hospitalized (adjusted odds ratio: 3.4; 95% confidence interval: 1.3-8.7). None of the hospitalizations occurred at the request of the resident; 37% were at the request of relatives; curative or life-prolonging treatments were the most frequent reasons given. Information about the resident's nursing care or medical treatment was transferred in almost all hospitalizations, information about wishes and preferences for future care in 19%., Conclusion: Hospitalization in Belgian nursing home residents with dementia in the last month of life was common. Documentation of do-not-hospitalize physician-orders in the resident's medical files may prevent hospitalizations., (© The Author(s) 2014.)

Aims: To investigate how often nursing staff perceive caring for nursing home residents with dementia at the end of life as an emotional and/or physical burden, and to identify associated factors., Design: Postdeath study conducted in 2010 in Flanders, Belgium. Nursing homes were selected through random clustersampling., Methods: All residents who died with dementia in a three-month period were identified, and a structured questionnaire was completed by the nurse mostly involved. Nursing staff were asked to indicate how they perceived burden of caregiving for this resident on 10-point scale., Results: Sixty-nine out of 120 nursing homes (response rate 58%) participated in the study. In 37% and 32% of cases, respectively, the nursing staff reported that they perceived themselves as experiencing a high emotional and physical burden. In cases where the resident had capacity for medical decision making during the last week of life and where the nurse had spoken with a relative about wishes for medical end-of-life treatments, they were more likely to report an emotional burden. A physical burden was more likely to be reported where the resident had decubitus ulcers or had developed pneumonia., Conclusion: In one-third of cases, nursing staff experienced a high emotional and/or physical burden. While experiencing a physical burden seems to be related to the poorer clinical status of the resident, an emotional burden was more likely to be related to greater and closer contact with the resident or a relative and to the nurse being involved in the process of care and decision making in the last phase of life., Implications for Practice: This study highlights the need to support nursing home staff in providing compassionate end-of-life care for people with dementia and suggests that both the physical and emotional burdens in staff should be monitored regularly to achieve optimal working., (© 2014 John Wiley & Sons Ltd.)

Background: Advance care planning is considered a central component of good quality palliative care and especially relevant for people who lose the capacity to make decisions at the end of life, which is the case for many nursing home residents with dementia. We set out to investigate to what extent (1) advance care planning in the form of written advance patient directives and verbal communication with patient and/or relatives about future care and (2) the existence of written advance general practitioner orders are related to the quality of dying of nursing home residents with dementia., Methods: Cross-sectional study of deaths (2010) using random cluster-sampling. Representative sample of nursing homes in Flanders, Belgium. Deaths of residents with dementia in a three-month period were reported; for each the nurse most involved in care, GP and closest relative completed structured questionnaires., Findings: We identified 101 deaths of residents with dementia in 69 nursing homes (58% response rate). A written advance patient directive was present for 17.5%, GP-orders for 56.7%. Controlling for socio-demographic/clinical characteristics in multivariate regression analyses, chances of having a higher mean rating of emotional well-being (less fear and anxiety) on the Comfort Assessment in Dying with Dementia scale were three times higher with a written advance patient directive and more specifically when having a do-not-resuscitate order (AOR 3.45; CI,1.1-11) than for those without either (AOR 2.99; CI,1.1-8.3). We found no association between verbal communication or having a GP order and quality of dying., Conclusion: For nursing home residents with dementia there is a strong association between having a written advance directive and quality of dying. Where wishes are written, relatives report lower levels of emotional distress at the end of life. These results underpin the importance of advance care planning for people with dementia and beginning this process as early as possible.

Context: Advance care planning (ACP) is key to good palliative care for nursing home (NH) residents with dementia., Objectives: We examined the extent to which the family physicians (FPs), nurses, and the relative most involved in the resident's care are informed about ACP, written advance directives, and FP treatment orders (FP-orders) for NH residents dying with dementia. We also examined the congruence among FP, nurse, and relative regarding the content of ACP., Methods: This was a representative nationwide post-mortem study (2010) in Flanders, Belgium, using random cluster sampling. In selected NHs, all deaths of residents with dementia in a three month period were reported. A structured questionnaire was completed by the FP, the nurse, and the patient's relative., Results: We identified 205 deceased residents with dementia in 69 NHs. Residents expressed their wishes regarding end-of-life care in 11.8% of cases according to the FP. The FP and nurse spoke with the resident in 22.0% and 9.7% of cases, respectively, and with the relative in 70.6% and 59.5%, respectively. An advance directive was present in 9.0%, 13.6%, and 18.4% of the cases according to the FP, nurse, and the relative, respectively. The FP-orders were present in 77.3% according to the FP, and discussed with the resident in 13.0% and with the relative in 79.3%. Congruence was fair (FP-nurse) on the documentation of FP-orders (k=0.26), and poor to slight on the presence of an advance directive (FP-relative, k=0.03; nurse-relative, k=-0.05; FP-nurse k=0.12)., Conclusion: Communication regarding care is rarely patient driven and more often professional caregiver or family driven. The level of congruence between professional caregivers and relatives is low., (Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Background: Providing good quality care for the growing number of patients with dementia is a major challenge. There is little international comparative research on how people with dementia die in nursing homes. We compared the relative's judgment on quality of care at the end of life and quality of dying of nursing home residents with dementia in Belgium and the Netherlands., Methods: This was a Belgian cross-sectional retrospective study (2010) combined with a prospective and retrospective study from the Netherlands (January 2007-July 2011). Relatives of deceased residents of 69 Belgian and 34 Dutch nursing homes were asked to complete questionnaires. We included 190 and 337 deceased nursing home residents with dementia in Belgium and the Netherlands, respectively., Results: Of all identified deceased nursing home residents with dementia, respectively 53.2% and 74.8% of their relatives in Belgium and the Netherlands responded. Comfort while dying (CAD-EOLD, range 14-42) was rated better for Dutch nursing home residents than for Belgian nursing homes residents (26.1 vs. 31.1, OR 4.5, CI 1.8-11.2). We found no differences between countries regarding Satisfaction With Care (SWCEOLD, range 10-40, means 32.5 (the Netherlands) and 32.0 (Belgium)) or symptom frequency in the last month of life (SM-EOLD, range 0-45, means 26.4 (the Netherlands) and 27.2 (Belgium))., Conclusion: Although nursing home structures differ between Belgium and the Netherlands, the quality of care in the last month of life for residents with dementia is similar according to their relatives. However, Dutch residents experience less discomfort while dying. The results suggest room for improved symptom management in both countries and particularly in the dying phase in Belgium.

Objectives: To describe the characteristics of continuous deep sedation until death and the prior decision-making process of nursing home residents dying with dementia and to evaluate this practice according to features reflecting sedation guideline recommendations., Design: Epidemiological retrospective study completed using a case series analysis., Setting: Flemish nursing homes in 2010., Participants: From a representative sample of 69 nursing homes, all residents who had dementia and had been continuously and deeply sedated until death over a period of 3 months were selected., Measurements: Questionnaires to general practitioners (GPs), nurses, and relatives most involved in the care of the resident regarding the clinical characteristics of the resident, how sedation was decided upon and performed, quality of care, and dying. Advanced dementia was identified using the Global Deterioration and Cognitive Performance Scale. Whether this practice is in conformity with sedation guideline recommendations was also investigated., Results: Eleven of 117 deceased residents with dementia (9.4%, 95% confidence interval (CI) = 4.0-14.8) and nine of 64 residents with advanced dementia (14.1%, 95% CI = 5.3-22.8) were sedated. Two of the 11 sedated residents were not considered to be terminal. Sedation duration ranged from 1 to 8 days. Two received artificial food and fluids during sedation. Five were partly or fully competent at admission and three in the last week. Four had expressed their wishes or had been involved in end-of-life decision-making; for eight residents, the GP discussed the resident's wishes with their relatives. Relatives reported that five of the residents had one or more symptoms while dying. Nurses of three residents reported that the dying process was a struggle. For two residents, sedation was effective., Conclusion: Continuous deep sedation until death for nursing home residents does not always guarantee a dying process free of symptoms and might be amenable to improvement., (© 2013, Copyright the Authors Journal compilation © 2013, The American Geriatrics Society.)

Objectives: There is a lack of large-scale, nationwide data describing clinical characteristics and quality of dying of nursing home residents dying with dementia. We set out to investigate quality of end-of-life care and quality of dying of nursing home residents with dementia in Flanders, Belgium., Design/setting/participants: To obtain representativity, we conducted a postmortem study (2010) using random cluster sampling. In selected nursing homes, all deceased residents with dementia in a period of 3 months were reported. For each case, a structured questionnaire was filled in by the nurse most involved in care, the family physician, and the nursing home administrator. We used the Cognitive Performance Scale and Global Deterioration Scale to assess dementia. Main outcome measures were health status, clinical complications, symptoms at the end of life, and quality of dying., Measurements: Health status, clinical complications, symptoms at the end of life, and quality of dying., Results: We identified 198 deceased residents with dementia in 69 nursing homes (58% response rate). Age distribution was the same as all deceased residents with dementia in Flanders, 2010. Fifty-four percent had advanced dementia. In the last month of life, 95.5% had 1 or more sentinel events (eg, eating/drinking problems, febrile episodes, or pneumonia); most frequently reported symptoms were pain, fear, anxiety, agitation, and resistance to care. In the last week, difficulty swallowing and pain were reported most frequently. Pressure sores were present in 26.9%, incontinence in 89.2%, and cachexia in 45.8%. Physical restraints were used in 21.4% of cases, and 10.0% died outside the home. Comparing stages of dementia revealed few differences between groups regarding clinical complications, symptoms, or quality of dying., Conclusion: Regardless of the dementia stage, many nursing home residents develop serious clinical complications and symptoms in the last phase of life, posing major challenges to the provision of optimum end-of-life care., (Copyright © 2013 American Medical Directors Association, Inc. Published by Elsevier Inc. All rights reserved.)

Background: Advance care planning (ACP) is an important element of high-quality care in nursing homes, especially for residents having dementia who are often incompetent in decision-making toward the end of life. The aim of this study was describe the prevalence of documented ACP among nursing home residents with dementia in Flanders, Belgium, and associated clinical characteristics and outcomes., Methods: All 594 nursing homes in Flanders were asked to participate in a retrospective cross-sectional postmortem survey in 2006. Participating homes identified all residents who had died over the last two months. A structured questionnaire was mailed to the nurses closely involved in the deceased resident's care regarding the diagnosis of dementia and documented care planning, i.e. advance patient directives, authorization of a legal representative, and general practitioners' treatment orders (GP orders)., Results: In 345 nursing homes (58% response rate), nurses identified 764 deceased residents with dementia of whom 62% had some type of documented care plan, i.e. advance patient directives in 3%, a legal representative in 8%, and GP orders in 59%. Multivariate logistic regression showed that the presence of GP orders was positively associated with receiving specialist palliative care in the nursing home (OR 3.10; CI, 2.07-4.65). Chances of dying in a hospital were lower if there was a GP order (OR 0.38; CI, 0.21-0.70)., Conclusions: Whereas GP orders are relatively common among residents with dementia, advance patient directives and a legal representative are relatively uncommon. Nursing home residents receiving palliative care are more likely to have a GP order. GP orders may affect place of death.

Abstract Background An important part of palliative care is discussing preferences at end of life, however such conversations may not often occur. Care staff with greater self-efficacy towards end-of-life communication are probably more likely to have such discussions, however, there is a lack of research on self-efficacy towards end-of-life discussions among long-term care staff in Europe and related factors. Objectives Firstly, to describe and compare the self-efficacy level of long-term care staff regarding end-of-life communication across six countries; secondly, to analyse characteristics of staff and facilities which are associated to self-efficacy towards end-of-life communication. Design Cross-sectional survey. Settings Long-term care facilities in Belgium, England, Finland, Italy, the Netherlands and Poland (n = 290). Participants Nurses and care assistants (n = 1680) completed a self-efficacy scale and were included in the analyses. Methods Care staff rated their self-efficacy (confidence in their own ability) on a scale of 0 (cannot do at all) to 7 -(certain can do) of the 8-item communication subscale of the Self-efficacy in End-of-Life Care survey. Staff characteristics included age, gender, professional role, education level, training in palliative care and years working in direct care. Facility characteristics included facility type and availability of palliative care guidelines, palliative care team and palliative care advice. Analyses were conducted using Generalized Estimating Equations, to account for clustering of data at facility level. Results Thde proportion of staff with a mean self-efficacy score >5 was highest in the Netherlands (76.4%), ranged between 55.9% and 60.0% in Belgium, Poland, England and Finland and was lowest in Italy (29.6%). Higher levels of self-efficacy (>5) were associated with: staff over 50 years of age (OR 1.86 95% CI[1.30–2.65]); nurses (compared to care assistants) (1.75 [1.20–2.54]); completion of higher secondary or tertiary education (respectively 2.22 [1.53–3.21] and 3.11 [2.05–4.71]; formal palliative care training (1.71 [1.32–2.21]); working in direct care for over 10 years (1.53 [1.14–2.05]); working in a facility with care provided by onsite nurses and care assistants and offsite physicians (1.86 [1.30–2.65]); and working in a facility where guidelines for palliative care were available (1.39 [1.03–1.88]). Conclusion Self-efficacy towards end-of-life communication was most often low in Italy and most often high in the Netherlands. In all countries, low self-efficacy was found relatively often for discussion of prognosis. Palliative care education and guidelines for palliative care could improve the self-efficacy of care staff. [ABSTRACT FROM AUTHOR]