Search

Additional file 1:. PRISMA-P checklist

Additional file 3:. Draft data extraction table

Additional file 2:. MEDLINE draft search

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.

Additional file 4:. Quality and bias appraisal

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 Care homes provide personal care and support for older people who can no longer be supported in the community. As part of a larger study of integrated working between the NHS and care homes we asked older people how they accessed health care services. Our aim was to understand how older people resident in care homes access health services using the Andersen model of health care access. Methods Case studies were conducted in six care homes with different socio-economic characteristics, size and ownership in three study sites. Residents in all care homes with capacity to participate were eligible for the study. Interviews explored how residents accessed NHS professionals. The Andersen model of health seeking behaviour was our analytic framework. Findings Thirty-five participants were interviewed with an average of 4 different conditions. Expectations of their health and the effectiveness of services to mitigate their problems were low. Enabling factors were the use of intermediaries (usually staff, but also relatives) to seek access. Residents expected that care home staff would monitor changes in their health and seek appropriate help unprompted. Conclusions Care home residents may normalise their health care needs and frame services as unable to remediate these which may combine to disincline older care home residents to seek care. Care access was enabled using intermediaries -either staff or relatives-and the expectation that staff would proactively seek care when they observed new/changed needs. Residents may over-estimate the health-related knowledge of care home staff and their ability to initiate referrals to NHS professionals.

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.

Background Clear intervention specification is important, but often absent or incomplete in study reports. Namaste Care is a complex intervention for people with advanced dementia, but is not well specified, can be implemented differently, with limited evidence of effect, nor understanding of its optimal delivery. Aims a) To develop a programme theory(ies) of how the Namaste care intervention achieves particular outcomes, and in what circumstances. b) To refine and develop an evidence based Namaste Care intervention specification and training package acceptable to nursing care home staff and families. Methods A two phase approach incorporating both a realist evidence review and consensus methods. Consensus workshops first explored readability, understandability and utility of stimulus materials with Namaste Care naïve care home staff. Next emerging findings from the review were presented to stakeholders (care home staff, volunteers and family carers) with experience of Namaste Care, and nominal group techniques used to identify how intervention materials and resources required to support implementation could be refined. Drawing on nominal group technique analytical methods, analysis considered both the frequency of statement rankings alongside a thematic analysis of reasoning for preferences. Findings Presentation to Namaste Care naive staff resulted in changes to language and clarification of terms such as ‘personal care’. Two consensus workshops (n=15 care home staff participants, n=1 family carer participant, n=1 volunteer participant) further refined materials. An additional section of the intervention guide developed between workshop one and two focused on organisational preparation for Namaste Care implementation. Issues such as intervention timing, frequency, focus and staffing requirements were identified as requiring further specification. Conclusion A careful, staged, process of intervention specification and refinement revealed important issues that required attention. Addressing these before trial commencement could increase the likelihood of intervention fidelity

Topic guide for stakeholder interviews. (PDF 84 kb)

Table of included Namaste Care studies. (PDF 271 kb)

Table of included primary studies Phase 2. (PDF 277 kb)

Table of included reviews Phase 2. (PDF 205 kb)

Development of Preliminary Programme Theory. (PDF 227 kb)

Background: Caring for dying people can contribute to moral distress experienced by health care professionals. Moral distress can occur when this caring is restricted by organisational processes, resources or the provision of futile care. These factors apply to end of life care in nursing homes but research is lacking. \ud Aim: To describe how nursing home staff experience moral distress when caring for residents during and at the end of life. \ud Methods: An interpretive descriptive design, using the critical incident technique in semi-structured interviews to collect data from nursing home staff. Data were analysed using a thematic analysis approach. \ud Setting: Four Nursing Homes in one large metropolitan area. \ud Participants: 16 staff:- 2 nurse-managers, 4 nurses and 10 care assistants\ud Findings: Participants described holding ‘good dying’ values which influenced their practice. The four practice-orientated themes of advocating, caring, communicating and relating with residents were found to influence interactions with residents, relatives, GPs, and colleagues. These led staff to be able to ‘do the right thing’ or to experience ‘powerlessness’, which could in turn lead to staff perceiving a ‘bad death’ for residents.\ud Conclusion: When there are incongruent values concerning care between staff and others involved in the care of residents, staff feel powerless to ‘do the right thing’ and unable to influence care decisions in order to avoid a ‘bad death’. This powerlessness is the nature of their moral distress.

Background: Identification of valid, reliable and clinically relevant measures of quality of dying for palliative care trials is challenging. Self-reports and/or proxy reporting by professional or family carers has limitations. An alternative is measurement of general functioning (physical activity level or sleep patterns) evaluated with objective methods such accelerometers. There is increasing use of accelerometers in research, but little has considered this as an outcome measure for people with advanced dementia at the end of life. Aim: To determine the acceptability and utility of accelerometers as a proxy outcome of quality of dying in people with advanced dementia, and to estimate physical activity and sleep characteristics. Methods: 32 participants, from 6 nursing homes from the NAMASTE trial (a feasibility trial to improve the quality of dying for people with advanced dementia), wore a wrist band accelerometer (GENEActiv) for a maximum of 28 days. We estimated levels of physical activity and sleep characteristics (duration and efficiency). We used descriptive analyses and hierarchical linear models to describe and estimate activity and sleep. Acceptability of the accelerometer was ascertained by length of time worn and feedback from the resident, family or care staff. Results: The accelerometer was acceptable: 30 (94%) participants wore the actigraph continuously following the protocol (28 days) (1 participant withdrew from the study; 1 participant stopped wearing the device whilst in hospital). On average, measurements were available for 23.4 days (SD=2.8). No adverse effects were reported. Participants were generally inactive: they spent 98% of each day with low levels of activity < 50 ENMO (moderate physical activity is ~ 100); the ENMO mean was 8.5 (SD=4.1). For this group of participants, the estimated mean sleep duration was 7.6 hs (se=.41), and sleep efficiency was 68% (85% is healthy population target). Conclusions: The accelerometer was acceptable for wearing, but data on activity demonstrated an inactive population with indication that their sleep was not as healthy as it could be. It may be difficult to measure changes arising from an intervention using activity and sleep as a focus in this population.

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. Plain language summary Palliative care for people with advanced dementia Review question In this research, we wanted to see if palliative care helps people with advanced dementia or helps their family or carers. We also wanted to describe how researchers tried to measure the effect of palliative care. Background People with advanced dementia have serious memory problems and have problems making simple decisions. They are usually no longer able to communicate by talking. They need a lot of help from their carers. People with advanced dementia can live for a long time. It is very hard to say exactly how long a person with advanced dementia will live. Palliative care (or end-of-life care) is a particular way of caring for people who have diseases that cannot be cured. The main aims of palliative care are to reduce pain and to maintain the best possible quality of life as death approaches. Palliative care is used a lot with people with cancer but is not used much for people with advanced dementia. Study characteristics We examined the research published up to January 2016. We found only two suitable studies (189 people), both from the US. We also found six studies that were underway but the results were not yet published. Key results One study found that having a small team of doctors and nurses trained in palliative care made little difference to how people with advanced dementia were treated while in hospital. But, having this special team meant that more people had a palliative care plan when they were discharged from hospital. The other study measured if giving written information to relatives explaining the different methods that can be used to feed people with advanced dementia helped either the relatives or the person. This study found that giving relatives this information made it a little easier for relatives to make decisions about what methods would be used to feed the person with dementia. Certainty of evidence We only found two studies and the two palliative care methods in these studies were very different. We cannot be very certain about how accurate either of these results reported here are, partly because only a small number of people took part in the studies. So from these studies, it is hard to be sure whether palliative care makes a difference to people with advanced dementia. Final thoughts Little research has been done about people with advanced dementia, often because of ethical concerns. However, although it is hard to do research with people with dementia, more well-designed studies are required to work out how palliative care can be used best in this special population.

Objectives While a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Crosscountry 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 six countries in terms of 1) resident outcomes, quality and costs of palliative and end-of-life care; 2) palliative care structures and staff knowledge and attitudes towards 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 three-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 (GP 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 socio-demographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at 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.