Search

Objectives: The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions in LTCFs. The PACE study mapped palliative care in LTCFs in Europe, evaluated quality of end-of-life care and quality of dying in a cross-sectional study of deceased residents of LTCFs in 6 countries, and undertook a cluster-randomized control trial that evaluated the impact of the PACE Steps to Success intervention in 7 countries. Working with the European Association for Palliative Care, a white paper was written that outlined recommendations for the implementation of interventions to improve palliative and end-of-life care for all older adults with serious illness, regardless of diagnosis, living in LTCFs. The goal of the article is to present these key domains and recommendations., Design: Transparent expert consultation., Setting: International experts in LTCFs., Participants: Eighteen (of 20 invited) international experts from 15 countries participated in a 1-day face-to-face Transparent Expert Consultation (TEC) workshop in Bern, Switzerland, and 21 (of 28 invited) completed a follow-up online survey., Methods: The TEC study used (1) a face-to-face workshop to discuss a scoping review and initial recommendations and (2) an online survey., Results: Thirty recommendations about implementing palliative care for older people in LTCFs were refined during the TEC workshop and, of these, 20 were selected following the survey. These 20 recommendations cover domains at micro (within organizations), meso (across organizations), and macro (at national or regional) levels addressed in 3 phases: establishing conditions for action, embedding in everyday practice, and sustaining ongoing change., Conclusions and Implications: We developed a framework of 20 recommendations to guide implementation of improvements in palliative care in LTCFs., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Background: The number of older people dying in long-term care facilities is increasing; however, care at the end of life can be suboptimal. Interventions to improve palliative care delivery within these settings have been shown to be effective in improving care, but little is known about their implementation., Aim: The aim of this study was to describe the nature of implementation strategies and to identify facilitators and/or barriers to implementing palliative care interventions in long-term care facilities., Design: Scoping review with a thematic synthesis, following the ENTREQ guidelines., Data Sources: Published literature was identified from electronic databases, including MEDLINE, EMBASE, PsycINFO and CINAHL. Controlled, non-controlled and qualitative studies and evaluations of interventions to improve palliative care in long-term care facilities were included. Studies that met the inclusion criteria were sourced and data extracted on the study characteristics, the implementation of the intervention, and facilitators and/or barriers to implementation., Results: The review identified 8902 abstracts, from which 61 studies were included in the review. A matrix of implementation was developed with four implementation strategies (facilitation, education/training, internal engagement and external engagement) and three implementation stages (conditions to introduce the intervention, embedding the intervention within day-to-day practice and sustaining ongoing change)., Conclusion: Incorporating an implementation strategy into the development and delivery of an intervention is integral in embedding change in practice. The review has shown that the four implementation strategies identified varied considerably across interventions; however, similar facilitators and barriers were encountered across the studies identified. Further research is needed to understand the extent to which different implementation strategies can facilitate the uptake of palliative care interventions in long-term care facilities.

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 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: Addressing the concerns of family members is an important aspect of palliative and end-of-life care. One aspect that commonly causes family caregivers concern is the decline of patients' oral fluid intake in the last few days of life., Aim: To map the narratives in which family members' experiences of witnessing the diminishing drinking of a dying relative have been researched, review the findings within each narrative and consider directions for future research., Design: An adapted meta-narrative review approach., Data Sources: The Cumulative Index of Nursing and Applied Health Literature, Medline, PsycINFO, Psycharticles and Scopus databases were searched for relevant research published between January 1982 and December 2017. Quality was assessed using the Quality Assessment and Review Instrument., Results: A total of 22 papers met the inclusion criteria. No study focused specifically on the experiences of family members when witnessing the diminishing drinking of dying relatives. However, research about diminishing drinking was identified within studies broadly focusing on cancer cachexia, clinical decision-making about hydration and/or nutrition and support in a hospice context. The research indicates that family members' experiences of diminishing drinking vary with their views about the significance of drinking, dying well and their expectations of themselves and healthcare professionals., Conclusion: While some understanding of the topic can be inferred from research in related areas, there is a paucity of information specifically about family members' experiences when witnessing the diminishing drinking of a dying relative.

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.

Although chronic obstructive pulmonary disease (COPD) is recognized as being a life-limiting condition with palliative care needs, palliative care provision is seldom implemented. The disease unpredictability, the misconceptions about palliative care being only for people with cancer, and only relevant in the last days of life, prevent a timely integrated care plan. This systematic review aimed to explore how palliative care is provided in advanced COPD and to identify elements defining integrated palliative care. Eight databases, including MEDLINE, EMBASE and CINAHL, were searched using a comprehensive search strategy to identify studies on palliative care provision in advanced COPD, published from January 1, 1960 to November 30, 2017. Citation tracking and evaluation of trial registers were also performed. Study quality was assessed with a critical appraisal tool for both qualitative and quantitative data. Of the 458 titles, 24 were eligible for inclusion. Experiences about advanced COPD, palliative care timing, service delivery and palliative care integration emerged as main themes, defining a developing taxonomy for palliative care provision in advanced COPD. This taxonomy involves different levels of care provision and integrated care is the last step of this dynamic process. Furthermore, palliative care involvement, holistic needs' assessment and management and advance care planning have been identified as elements of integrated care. This literature review identified elements that could be used to develop a taxonomy of palliative care delivery in advanced COPD. Further research is needed to improve our understanding on palliative care provision in advanced COPD.

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: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries., Methods: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the 'Pace Steps to Success intervention' or to 'care as usual'. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey)., Secondary Outcomes: resident's quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework., Discussion: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities 'PACE Steps to Success' in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems., Trial Registration: The study is registered at www.isrctn.com - ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015.

Background: Higher acuity of care at the time of admission to long-term care (LTC) is resulting in a shorter period to time of death, yet most LTC homes in Canada do not have formalized approaches to palliative care. Namaste Care is a palliative care approach specifically tailored to persons with advanced cognitive impairment who are living in LTC. The purpose of this study was to employ the ecological framework to identify barriers and enablers to an implementation of Namaste Care., Methods: Six group interviews were conducted with families, unlicensed staff, and licensed staff at two Canadian LTC homes that were planning to implement Namaste Care. None of the interviewees had prior experience implementing Namaste Care. The resulting qualitative data were analyzed using a template organizing approach., Results: We found that the strongest implementation enablers were positive perceptions of need for the program, benefits of the program, and fit within a resident-centred or palliative approach to care. Barriers included a generally low resource base for LTC, the need to adjust highly developed routines to accommodate the program, and reliance on a casual work force., Conclusions: We conclude that within the Canadian LTC system, positive perceptions of Namaste Care are tempered by concerns about organizational capacity to support new programming.

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.)

Background: Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer but for more than a decade, there have been increased calls worldwide to extend palliative care services to include all people with life-limiting illnesses in need of specialist care, including people with dementia., Objectives: To assess the effect of palliative care interventions in advanced dementia and to report on the range of outcome measures used., Search Methods: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's Specialized Register on 4 February 2016. ALOIS contains records of clinical trials identified from monthly searches of several major healthcare databases, trial registries and grey literature sources. We ran additional searches across MEDLINE (OvidSP), Embase (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCOhost), LILACS (BIREME), Web of Science Core Collection (ISI Web of Science), ClinicalTrials.gov and the World Health Organization ICTRP trial portal to ensure that the searches were as comprehensive and as up-to-date as possible., Selection Criteria: We searched for randomised (RCT) and non-randomised controlled trials (nRCT), controlled before-and-after studies (CBA) and interrupted time series studies evaluating the impact of palliative care interventions for adults with dementia of any type, staged as advanced dementia by a recognised and validated tool. Participants could be people with advanced dementia, their family members, clinicians or paid care staff. We included clinical interventions and non-clinical interventions. Comparators were usual care or another palliative care intervention. We did not exclude studies on the basis of outcomes measured and recorded all outcomes measured in included studies., Data Collection and Analysis: Two review authors independently assessed for inclusion all the potential studies we identified as a result of the search strategy. We resolved any disagreement through discussion or, when required, consulted with the rest of the review team. We independently extracted data and conducted assessment of methodological quality, using standard Cochrane methods., Main Results: We identified two studies of palliative care interventions for people with advanced dementia. We did not pool data due to the heterogeneity between the two trials in terms of the interventions and the settings. The two studies measured 31 different outcomes, yet they did not measure the same outcome. There are six ongoing studies that we expect to include in future versions of this review.Both studies were at high risk of bias, in part because blinding was not possible. This and small sample sizes meant that the overall certainty of all the evidence was very low.One individually randomised RCT (99 participants) evaluated the effect of a palliative care team for people with advanced dementia hospitalised for an acute illness. While this trial reported that a palliative care plan was more likely to be developed for participants in the intervention group (risk ratio (RR) 5.84, 95% confidence interval (CI) 1.37 to 25.02), the plan was only adopted for two participants, both in the intervention group, while in hospital. The palliative care plan was more likely to be available on discharge in the intervention group (RR 4.50, 95% CI 1.03 to 19.75). We found no evidence that the intervention affected mortality in hospital (RR 1.06, 95% CI 0.53 to 2.13), decisions to forgo cardiopulmonary resuscitation in hospital or the clinical care provided during hospital admission, but for the latter, event rates were low and the results were associated with a lot of uncertainty.One cluster RCT (256 participants, each enrolled with a family carer) evaluated the effect of a decision aid on end-of-life feeding options on surrogate decision-makers of nursing home residents with advanced dementia. Data for 90 participants (35% of the original study) met the definition of advanced dementia for this review and were re-analysed for the purposes of the review. In this subset, intervention surrogates had lower scores for decisional conflict measured on the Decisional Conflict Scale (mean difference -0.30, 95% CI -0.61 to 0.01, reduction of 0.3 to 0.4 units considered meaningful) and were more likely than participants in the control group to discuss feeding options with a clinician (RR 1.57, 95% CI 0.93 to 2.64), but imprecision meant that there was significant uncertainty about both results., Authors' Conclusions: Very little high quality work has been completed exploring palliative care interventions in advanced dementia. There were only two included studies in this review, with variation in the interventions and in the settings that made it impossible to conduct a meta-analysis of data for any outcome. Thus, we conclude that there is insufficient evidence to assess the effect of palliative care interventions in advanced dementia. The fact that there are six ongoing studies at the time of this review indicates an increased interest in this area by researchers, which is welcome and needed.

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.)

Aims and Objectives: The involvement of patients in the design and conduct of research is increasingly promoted by policy and research bodies. The experiences of individuals who become involved in research in this way are not well understood. This study aims to describe the experiences of people's participation in patient and public involvement (PPI) in supportive and palliative care research, specifically with respect to the benefits and challenges of participation for the individuals and the broader research support structures., Methods: In this qualitative exploratory study, semistructured interviews were undertaken with individuals who had a cancer diagnosis and were involved in a supportive and palliative care research collaborative over a period of 6 years. Recruitment was through the host university organisations involved in the research collaborative. A thematic analysis was undertaken to identify commonalities and differences across their experiences., Findings: The eight participants in the study were highly motivated and undertook PPI in research alongside other voluntary activities. They identified a number of research and personal benefits: bringing a lay perspective into research, making a difference and personal gains. Personal gains concerned support, new knowledge and skills and greater confidence. The challenges to participation that were identified included the emotional and practical nature of the work, issues of language and identifying the difference made., Conclusions: Involvement in supportive and palliative care research is valued by people with a cancer diagnosis, but there are ongoing issues of emotional support and good communication through the use of appropriate language in documentation., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Background: Public awareness work regarding palliative and end-of-life care is increasingly promoted within national strategies for palliative care. Different approaches to undertaking this work are being used, often based upon broader educational principles, but little is known about how to undertake such initiatives in a way that equally engages both the health and social care sector and the local communities. An asset-based community engagement approach has been developed that facilitates community-led awareness initiatives concerning end-of-life conversations and care by identifying and connecting existing skills and expertise., Aims: (1) To describe the processes and features of an asset-based community engagement approach that facilitates community-led awareness initiatives with a focus on end-of-life conversations and care; and (2) to identify key community-identified priorities for sustainable community engagement processes., Methods: An asset-based model of community engagement specific to end-of-life issues using a four-step process is described (getting started, coming together, action planning and implementation). The use of this approach, in two regional community engagement programmes, based across rural and urban communities in the northwest of England, is described., Findings: The assets identified in the facilitated community engagement process encompassed people's talents and skills, community groups and networks, government and non-government agencies, physical and economic assets and community values and stories. Five priority areas were addressed to ensure active community engagement work: information, outreach, education, leadership and sustainability., Conclusions: A facilitated, asset-based approach of community engagement for end-of-life conversations and care can catalyse community-led awareness initiatives. This occurs through the involvement of community and local health and social care organisations as co-creators of this change across multiple sectors in a sustainable way. This approach provides a framework for other communities seeking to engage with public awareness in end-of-life issues., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.)

Background: Action research is beginning to be utilized within palliative care research to address questions concerned with practice and organizational change. An understanding of appropriate evaluation practices is required in order to ensure that high-quality action research is conducted., Aim: The aim of this paper is to present an account of participatory action research and illustrate the way in which evaluation approaches are integrated within this methodology., Design: Participatory action research will be described identifying its origins, principles and its relationship with evaluation frameworks. The key features of the evaluation process in regard to participatory research are outlined., Setting: Two studies are presented which illustrate the integration of evaluation within a participatory action research framework. The first approach uses a before-after summative evaluation approach in a study undertaken to develop palliative care practice within a UK nursing home context. The evaluation focused upon the impact of the intervention. The second study utilized similar methods and addressed the process of the action research using the Äldreväst Sjuhärad (ÄVS) model to evaluate participation in a peer education programme for advance care planning amongst older adults., Results: These examples of evaluation within action research illustrate how diverse methods can be used. The use of a specific participatory evaluation model ensures the process reflects the underlying participatory principle of action research., Conclusions: Evaluation processes are integral to action research approaches. The specific evaluative methods adopted will reflect the nature and focus of the evaluation being undertaken.

Objective: To describe the processes of establishing and running the Cancer Experiences Collaborative (CECo), and reflect upon the benefits and challenges of undertaking collaborative research in supportive and palliative care., Design: A descriptive analysis of a 5-year research collaborative initiated in 2006., Setting: Research groups at the Universities of Lancaster, Liverpool, Manchester, Nottingham and Southampton, England., Participants: 26 UK organisations including the four largest hospices in England, hospital cancer centres, Help the Hospices (a national charity supporting independent hospices) and user representatives., Findings: The aim of CECo was to enhance the value, quality and productivity of scientific research in supportive and palliative care, and to increase research capacity and improve the coordination of collaborative research. Three programmatic themes of research were established: (i) innovative approaches to complex symptoms, (ii) planning for the care of older adults towards the end of life and (iii) research methodology including narrative approaches. Four benefits and challenges are highlighted: strategic leadership and management structures for cross-institutional work, working in multidisciplinary groups and linking research with practice settings, capacity building, and user involvement., Conclusions: The activities of CECo have resulted in significant benefits with an increase in good quality research studies that have led to the production of a significant number of peer-reviewed papers, and learning between academics, clinicians and users, which has contributed to raising the standards of supportive and palliative care research. However, the future of such research initiatives is fragile, with concerns about the sustainability of collaboration in the face of diminishing resources.

Background: Residents of nursing care homes for older people are highly likely to die there, making these places where palliative care is needed., Objectives: The primary objective was to determine effectiveness of multi-component palliative care service delivery interventions for residents of care homes for older people. The secondary objective was to describe the range and quality of outcome measures., Search Strategy: The grey literature and the following electronic databases were searched: Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effectiveness (all issue 1, 2010); MEDLINE, EMBASE, CINAHL, British Nursing Index, (1806 to February 2010), Science Citation Index Expanded & AMED (all to February 2010). Key journals were hand searched and a PubMed related articles link search was conducted on the final list of articles., Selection Criteria: We planned to include Randomised Clinical Trials (RCTs), Controlled Clinical Trials (CCTs), controlled before-and-after studies and interrupted time series studies of multi-component palliative care service delivery interventions for residents of care homes for older people. These usually include the assessment and management of physical, psychological and spiritual symptoms and advance care planning. We did not include individual components of palliative care, such as advance care planning., Data Collection and Analysis: Two review authors independently assessed studies for inclusion, extracted data, and assessed quality and risk of bias. Meta analysis was not conducted due to heterogeneity of studies. The analysis comprised a structured narrative synthesis. Outcomes for residents and process of care measures were reported separately., Main Results: Two RCTs and one controlled before-and-after study were included (735 participants). All were conducted in the USA and had several potential sources of bias. Few outcomes for residents were assessed. One study reported higher satisfaction with care and the other found lower observed discomfort in residents with end-stage dementia. Two studies reported group differences on some process measures. Both reported higher referral to hospice services in their intervention group, one found fewer hospital admissions and days in hospital in the intervention group, the other found an increase in do-not-resuscitate orders and documented advance care plan discussions., Authors' Conclusions: We found few studies, and all were in the USA. Although the results are potentially promising, high quality trials of palliative care service delivery interventions which assess outcomes for residents are needed, particularly outside the USA. These should focus on measuring standard outcomes, assessing cost-effectiveness, and reducing bias.

Objective: To review the evidence for end-of-life care for community dwelling older people with dementia (including those resident in care homes)., Design: An integrated review synthesised the qualitative and quantitative evidence on end-of-life care for community dwelling older people with dementia. English language studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included. A user representative group informed decisions on the breadth of literature used. Each study selected was screened independently by two reviewers using a standardised check list., Results: Sixty eight papers were included. Only 17% (12) exclusively concerned living and dying with dementia at home. Six studies included direct evidence from people with dementia. The studies grouped into four broad categories: Dementia care towards the end of life, palliative symptom management for people with dementia, predicting the approach of death for people with dementia and decision-making. The majority of studies were descriptive. The few studies that developed dementia specific tools to guide end of life care and outcome measures specific to improve comfort and communication, demonstrated what could be achieved, and how much more needs to be done., Conclusions: Research on end-of-life care for people with dementia has yet to develop interventions that address the particular challenges that dying with dementia poses. There is a need for investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.

Action research in health care is a relatively new research approach, which is adopted when one aim of the research is to bring about change in practice and to research the process of that change. This paper describes the way action research, as a research methodology, can be used to develop palliative care knowledge in generalist care settings. An overview of action research is presented and its relationship to more conventional research paradigms. Two action research projects, undertaken to develop knowledge about end-of-life care for older people in care homes, are used to illustrate the key principles of action research, methods of data collection and data analysis. Finally, the challenges of such, utilising an action research approach and its strengths, are discussed.

A collaborative, evaluative review of qualitative research in palliative care published between 1990 and 1999 has been conducted. Nearly 30,000 articles in 48 journals from specialist palliative care, oncology, death studies, medicine, nursing, gerontology, health and the social sciences were examined. From these journals, 138 articles (0.5%) reporting qualitative research with a focus on palliative care in the context of death, dying or bereavement were identified. These articles were reviewed using a proforma designed by the group. This article describes the review process, and the following findings: the distribution of different forms of qualitative research in palliative care; the location of such papers; the focus of the research; and the research methodology and methods adopted.

The development of practice is but one aspect of Clinical Nurse Specialists' (CNSs) work, and a number of factors act to shape the extent to which CNSs are able to work with and develop practice with nursing and residential care homes. A postal survey of 730 community CNSs in palliative care working in the UK was undertaken to explore the involvement of these nurses with nursing and residential care homes. Much of the focus of the involvement was reactive work meeting the direct clinical needs of residents, primarily with cancer. Although the CNSs perceived that there were some educational and care deficits in these care settings, the amount of proactive work undertaken to improve practice was limited. The development work undertaken was focused on educational initiatives and establishing link nurse systems. There is potential to develop palliative care practice in nursing and residential care homes through practice development initiatives.

The provision of end-of-life care within nursing and residential care homes is of concern to policy makers and specialist palliative care providers. There is evidence of an increasing number of initiatives involving clinical nurse specialists (CNS) with the care of residents within these care settings, but the extent to which this is occurring in the UK has not been documented. A survey of 730 community CNS in palliative care was undertaken to describe the extent to which these practitioners are involved with the care of residents in nursing and residential care homes and the nature of this work. Although 92% of the CNS surveyed had worked with nursing homes and 80% of the CNS with residential care homes, the responses showed that this work was primarily reactive and undertaken infrequently. The majority of the work undertaken by CNS involved caring for patients with malignant conditions with a clinical focus addressing the management of physical symptoms.

Background: Qualitative research plays an important part in providing evidence for practice in nursing, and is gaining greater acceptance within medicine. However, questions remain about what criteria are most appropriate for evaluating qualitative research. To date, little systematic evaluation of qualitative research in palliative care has been conducted., Aims: This paper is based on a larger study in which we conducted a critical review of qualitative research in palliative care from nursing, medicine, specialist palliative care, sociology, death studies, medical anthropology, and gerontology journals published between 1990 and 1999. The aim of this paper is to present an account of the strengths and weaknesses of qualitative palliative care research in nursing, using data from this review., Methods: In the larger study, 138 papers from 50 journals were reviewed critically using a tool developed to assess both content and quality; in one part of this tool reviewers recorded open-ended comments on the strengths and weaknesses of each paper. In this paper, we present a thematic analysis of reviewers' comments on a subgroup of 67 nursing papers from the main review, together with an analysis of comments on 29 papers from a comparison group of death studies, medical anthropology, and sociology journals. Patterns of positive and negative evaluation are identified and used to generate an account of strengths and weaknesses in qualitative palliative care research in nursing., Findings: Over 40% of the subgroup of papers from nursing journals received positive comments on topic and quality of writing; around 30% received positive comments on contribution to understanding, practical value, and conceptual or theoretical issues. Less than 20% received positive comments on other critical dimensions. Over 40% of nursing papers received negative comments on the link between data, analysis, and findings, other aspects of method and theoretical and conceptual issues. A higher proportion of papers in the comparison group received positive comments on conceptual and theoretical issues and contribution to understanding., Conclusions: Nearly half the nursing papers reviewed were judged to be well written or to have a well-chosen topic. However, more than 40% of papers drew negative comments about key methods-related issues. Arguably therefore efforts to improve the quality of research evidence should focus on this area.

Background: Chronic obstructive pulmonary disease (COPD) is a life-limiting condition with palliative care needs. Despite increasing awareness about the role palliative care can play in care provision for patients with advanced COPD, integration in standard care remains underdeveloped. The unpredictability of the disease progression and misconceptions about palliative care being equivalent to end-of-life care often prevent a timely integrated approach in advanced COPD. Aim: To identify practices designed to increase integration of palliative care in the management of patients with advanced COPD in a respiratory service in Southern Switzerland. Design: A participatory action research approach was chosen and key stakeholders were involved to develop new knowledge and practices, supported by a Theory of Change framework. Data from each cycle and retrospective analysis at the end of the whole research were analysed using thematic analysis. Setting/participants: Five action research cycles with seven healthcare professionals working in palliative or respiratory care settings were conducted. Results: Three elements of integrated palliative care in advanced COPD were identified: multidimensional assessment, healthcare professionals' education and interdisciplinary team meetings, which are the pillars of a new integrated palliative care model for patients with advanced COPD. Conclusions: The new integrated palliative care model in advanced COPD includes essential elements with a focus on patients, healthcare professionals and care delivery. Further research on testing this model in clinical practice, service development, implementation processes and possible outcomes, including evaluation of the financial impact of integrated palliative care is necessary to foster this care approach across all possible settings. [ABSTRACT FROM AUTHOR]

The disease trajectory in chronic obstructive pulmonary disease (COPD) is characterised by a progressive decline in overall function, loss of independence and reduction of health-related quality of life. Although the symptom burden is high and care is often demanding, patients' and informal carers' experiences in living with advanced COPD are seldom described. This study sought to explore patients' and informal carers' experiences in living with advanced COPD and to understand their awareness about palliative care provision in advanced COPD. About 20 patients and 20 informal carers were recruited in a respiratory care service in Southern Switzerland. Semistructured individual interviews with participants were conducted on clinic premises and audio-recorded. Interviews lasted between 35 and 45 min. Data were analysed using thematic analysis. Living day to day with COPD, psychosocial dimension of the disease and management of complex care were the main themes identified. Patients and informal carers reported a range of psychological challenges, with feelings of guilt, discrimination and blame. Most of the participants had no knowledge of palliative care and healthcare services did not provide them with any information about palliative care approaches in advanced COPD. The reported psychological challenges may influence the relationship between patients, informal carers and healthcare professionals, adding further complexity to the management of this long-term condition. Further research is needed to explore new ways of managing complex care in advanced COPD and to define how palliative care may be included in this complex care network. [ABSTRACT FROM AUTHOR]

Background: Seventy percent of people with advanced dementia live and die in care homes. Multisensory approaches, such as Namaste Care, have been developed to improve the quality of life and dying for people with advanced dementia but little is known about effectiveness or optimum delivery. The aim of this review was to develop an explanatory account of how the Namaste Care intervention might work, on what outcomes, and in what circumstances.Methods: This is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories, and their validation with a purposive sample of stakeholders. Twenty stakeholders - user/patient representatives, dementia care providers, care home staff, researchers -took part in interviews and/or workshops.Results: We included 85 papers. Eight focused on Namaste Care and the remainder on other types of sensory interventions such as music therapy or massage. We identified three context-mechanism-outcome configurations which together provide an explanatory account of what needs to be in place for Namaste Care to work for people living with advanced dementia. This includes: providing structured access to social and physical stimulation, equipping care home staff to cope effectively with complex behaviours and variable responses, and providing a framework for person-centred care. A key overarching theme concerned the importance of activities that enabled the development of moments of connection for people with advanced dementia.Conclusions: This realist review provides a coherent account of how Namaste Care, and other multisensory interventions might work. It provides practitioners and researchers with a framework to judge the feasibility and likely success of Namaste Care in long term settings. Key for staff and residents is that the intervention triggers feelings of familiarity, reassurance, engagement and connection.Study Registration: This study is registered as PROSPERO CRD42016047512. [ABSTRACT FROM AUTHOR]

Background Older people living in care homes often have limited life expectancy. Practitioners and policymakers are increasingly questioning the appropriateness of many acute hospital admissions and the quality of end-of-life care provided in care homes. Aim To describe care home residents' trajectories to death and care provision in their final weeks of life. Design and setting Prospective study of residents in six residential care homes in three sociodemographically varied English localities: Hertfordshire, Essex, and Cambridgeshire. Method Case note reviews and interviews with residents, care home staff, and healthcare professionals. Results Twenty-three out of 121 recruited residents died during the study period. Four trajectories to death were identified: 'anticipated dying' with an identifiable end-of-life care period and death in the care home (n = 9); 'unexpected dying' with death in the care home that was not anticipated and often sudden (n = 3); 'uncertain dying' with a period of diagnostic uncertainty or difficult symptom management leading to hospital admission and inpatient death (n = 7); and 'unpredictable dying' with an unexpected event leading to hospital admission and inpatient death (n = 4). End-of-life care tools were rarely used. Most residents who had had one or more acute hospital admission were still alive at the end of the study. Conclusion For some care home residents there was an identifiable period when they were approaching the end-of-life and planned care was put in place. For others, death came unexpectedly or during a period of considerable uncertainty, with care largely unplanned and reactive to events. [ABSTRACT FROM AUTHOR]

The article discusses a study exploring the experiences of spouse caregivers of people with advanced dementia living in nursing homes, conducted in two nursing homes in Northern England and published in 2013. Based from their findings, the researchers recommend making nursing home staff aware that spouse caregivers may be struggling with their role and status. They further recommend the inclusion of communication skills in educational programmes for nursing home staff.

Older people who live alone face particular challenges if they are to age and die well in the place and manner of their choosing. This discussion paper examines the experiences and needs of older people living alone towards the end of life. The paper focuses on the UK, given recent policy and service development initiatives there which emphasize home as a place of support and care; the promotion of independence; ensuring choice and decision making; and equity. These initiatives do not acknowledge diversity in the older population and make little provision to meet the specific needs that older people living alone may have as they approach the end of life. We identify three broader social factors that influence whether older people who live alone can remain at home until the end of their lives. The first factor is the physical environment; the second concerns their material environment; and the third relates to their social environment and their access to informal and formal care services. In future, palliative care research of relevance to older people should consider living arrangements as an important variable and be cognisant of the way in which wider social issues constrain the quality of end-of-life care that those living alone in older age receive. [ABSTRACT FROM AUTHOR]

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers’ understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents’ conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home. [ABSTRACT FROM AUTHOR]

Choice is a key theme in current government policy within the United Kingdom. Present as an important value for the delivery of public services, of particular interest here is choice at the end of life. By focusing on older people residing in care homes, a number of questions are raised about the implications of this aspiration. What does choice mean for older people who are societally marginalised and live in a care setting that sits, primarily, outside public provision? Aspects of choice are explored here with respect to when choice is offered, what care is provided and where this occurs. Both the context of care and the population to whom choice is to be offered shape the nature of choice as is outlined here. [ABSTRACT FROM PUBLISHER]

Prison populations across the world are increasing. In the United Kingdom, numbers have doubled in the last two decades, and older prisoners now constitute the fastest growing section of the prison population. One key reason for this shifting prisoner demographic is the growing numbers of men convicted of ‘historic’ sexual offences, many of whom are imprisoned for the first time in old age, and housed in prisons not suited to their needs. These demographic changes have profound consequences, including increased demand for health and social care in prison, and rising numbers of anticipated deaths in custody. Using the findings from a recently completed study of palliative care in prison, this paper proposes that older prisoners face a ‘double burden’ when incarcerated. This double burden means that as well as being deprived of their liberty, older people experience additional suffering by not having their health and wellbeing needs met. For some, this double burden includes a ‘de facto life sentence’, whereby because of their advanced age and the likelihood that they will die in prison, they effectively receive a life sentence for a crime that would not normally carry a life sentence. There has been little popular or academic debate concerning the ethical and justice questions that this double burden raises. Drawing on the work of Wacquant and others, the paper proposes that these changes are best understood as unplanned but reasonably foreseeable consequences of neoliberal penal policies. Although the paper focuses on the UK (which by comparison with other European countries has high rates of imprisonment), many of the challenges discussed are emerging in other countries across the world. This paper illustrates starkly how neoliberal policies and discourses have shaped the expansion and composition of the prison population with its consequent implications for health and justice. [ABSTRACT FROM AUTHOR]

This 2008 study assessed location-of-death changes in Canada during 1994–2004, after previous research had identified a continuing increase to 1994 in hospital deaths. The most recent (1994–2004) complete population and individual-level Statistics Canada mortality data were analyzed, involving 1,806,318 decedents of all Canadian provinces and territories except Quebec. A substantial and continuing decline in hospitalized deaths was found (77.7%–60.6%). This decline was universal among decedents regardless of age, gender, marital status, whether they were born in Canada or not, across urban and rural provinces, and for all but two (infrequent) causes of death. This shift occurred in the absence of policy or purposive healthcare planning to shift death or dying out of hospital. In the developed world, recent changing patterns in the place of death, as well as the location and type of care provided near death appear to be occurring, making location-of-death trends an important topic of investigation. Canada is an important case study for highlighting the significance of location-of-death trends, and suggesting important underlying causal relationships and implications for end-of-life policies and practices. [Copyright &y& Elsevier]