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

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

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019.

BACKGROUND: Dementia palliative care is increasingly subject of research and practice improvement initiatives. AIM: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. DESIGN: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019. SETTING/PARTICIPANTS: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. RESULTS: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased. CONCLUSION: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.

Palliative care provision in long-term care facilities differs across Europe: Results of a cross-sectional study in six European countries (PACE).

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.

Are care staff equipped for end-of-life communication? A cross-sectional study in long-term care facilities to identify determinants of self-efficacy.

BACKGROUND: End-of-life conversations are rarely initiated by care staff in long-term care facilities. A possible explanation is care staff's lack of self-efficacy in such conversations. Research into the determinants of self-efficacy for nurses and care assistants in end-of-life communication is scarce and self-efficacy might differ between care staff of mental health facilities, nursing homes, and care homes. This study aimed to explore differences between care staff in mental health facilities, nursing homes, and care homes with regard to knowledge about palliative care, time pressure, and self-efficacy in end-of-life communication, as well as aiming to identify determinants of high self-efficacy in end-of-life communication. METHODS: Two cross-sectional Dutch studies, one in mental health facilities and one in nursing and care homes (PACE study). Nurses and care assistants were invited to complete a questionnaire in 2015. Multivariable logistic regression analyses were performed to identify determinants of high self-efficacy. RESULTS: Five hundred forty one nurses and care assistants completed a survey; 137 worked in mental health facilities, 172 in nursing homes, and 232 in care homes. Care staff at mental health facilities were the most knowledgeable about the World Health Organization's definition of palliative care: 76% answered 4-5 out of 5 items correctly compared to 38% of nursing home staff and 40% of care home staff (p < 0.001). Around 60% of care staff in all settings experienced time pressure. Care staff had high self-efficacy regarding end-of-life communication with patients: the overall mean score across all facilities was 5.47 out of 7 (standard deviation 1.25). Determinants of high self-efficacy were working in a mental health facility, age > 36, female, with formal palliative care training, and knowledge of the palliative care definition. CONCLUSION: Mental healthcare staff knew more about palliative care and had higher self-efficacy in end-of-life communication compared to nursing and care home staff. Educating care staff about providing palliative care and training them in it might improve end-of-life communication in these facilities.

Evaluation of a Palliative Care Program for Nursing Homes in 7 Countries: The PACE Cluster-Randomized Clinical Trial.

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.

Research, recruitment and observational data collection in care homes: lessons from the PACE study.

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.

Evaluating the implementation of the PACE Steps to Success Programme in long-term care facilities in seven countries according to the RE-AIM framework.

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.

Are older long term care residents accurately prognosticated and consequently informed about their prognosis? Results from SHELTER study data in 5 European countries.

BACKGROUND: Informing residents in long term care facilities (LTCFs) about their prognosis can help them prepare for the end of life. This study aimed to examine which proportion of European LTCF residents, close to death, are accurately prognosticated and consequently informed about their prognosis; and to examine factors related to accurate prognostication and discussion of prognosis. METHODS: A subsample of SHELTER study data was used, consisting of: 500 residents from 5 European countries, who died within 6 months after their last assessment, and had a valid answer on the item 'End stage disease, 6 or fewer months to live'. This item was used to indicate whether an accurate prognosis was established and discussed with residents. Generalized estimating equations were used to examine factors related to establishment and discussion of accurate prognosis. RESULTS: 86.4% of residents close to death did not receive an accurate prognosis. Residents with cancer; fatigue; dehydration; and normal mode of nutritional intake were more likely to have an accurate prognosis established and discussed. Accurate prognostication and prognosis discussion was less likely for residents who: had a diagnosis under 'other'; initiated interactions; and residents from Germany, Italy and the Netherlands. CONCLUSIONS: The great majority of residents close to death did not receive an accurate prognosis. Prognostication tools might help clinicians to increase their prognostic accuracy and communication training might help to discuss prognosis with residents.

Comparing Palliative Care in Care Homes Across Europe (PACE): Protocol of a Cross-sectional Study of Deceased Residents in 6 EU Countries.

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.