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.
Objectives: We aimed to investigate the occurrence rates of clinical events and their associations with comfort in dying nursing home residents with and without dementia.
Methods: Epidemiological after-death survey was performed in nationwide representative samples of 322 nursing homes in Belgium, Finland, Italy, the Netherlands, Poland, and England. Nursing staff reported clinical events and assessed comfort. The nursing staff or physician assessed the presence of dementia; severity was determined using two highly discriminatory staff-reported instruments.
Results: The sample comprised 401 residents with advanced dementia, 377 with other stages of dementia, and 419 without dementia (N = 1197). Across the three groups, pneumonia occurred in 24 to 27% of residents. Febrile episodes (unrelated to pneumonia) occurred in 39% of residents with advanced dementia, 34% in residents with other stages of dementia and 28% in residents without dementia (P = .03). Intake problems occurred in 74% of residents with advanced dementia, 55% in residents with other stages of dementia, and 48% in residents without dementia (P < .001). Overall, these three clinical events were inversely associated with comfort. Less comfort was observed in all resident groups who had pneumonia (advanced dementia, P = .04; other stages of dementia, P = .04; without dementia, P < .001). Among residents with intake problems, less comfort was observed only in those with other stages of dementia (P < .001) and without dementia (P = .003), while the presence and severity of dementia moderated this association (P = .03). Developing “other clinical events” was not associated with comfort.
Conclusions: Discomfort was observed in dying residents who developed major clinical events, especially pneumonia, which was not specific to advanced dementia. It is crucial to identify and address the clinical events potentially associated with discomfort in dying residents with and without dementia.
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.
Context: To provide high-quality palliative care to nursing home residents, staff need to understand the basic principles of palliative care.
Objectives: to evaluate the extent of agreement with the basic principles of palliative care of nurses and care assistants working in nursing homes in five European countries and to identify correlates.
Methods: This is a cross-sectional study in 214 homes in Belgium, England, Italy, the Netherlands, and Poland. Agreement with basic principles of palliative care was measured with the Rotterdam MOVE2PC. We calculated percentages and odds ratios of agreement and an overall score between 0 (no agreement) and 5 (total agreement).
Results: Most staff in all countries agreed that palliative care involves more than pain treatment (58% Poland to 82% Belgium) and includes spiritual care (62% Italy to 76% Belgium) and care for family or relatives (56% Italy to 92% Belgium). Between 51% (the Netherlands) and 64% (Belgium) correctly disagreed that palliative care should start in the last week of life and 24% (Belgium) to 53% (Poland) agreed that palliative care and intensive life-prolonging treatment can be combined. The overall agreement score ranged between 1.82 (Italy) and 3.36 (England). Older staff (0.26; 95% confidence interval [CI]: 0.09–0.43, P = 0.003), nurses (0.59; 95% CI: 0.43–0.75, P < 0.001), and staff who had undertaken palliative care training scored higher (0.21; 95% CI: 0.08–0.34, P = 0.002).
Conclusions: The level of agreement of nursing home staff with basic principles of palliative care was only moderate and differed between countries. Efforts to improve the understanding of basic palliative care are needed.
BACKGROUND: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home.
AIMS: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.
DESIGN: A systematic review of home palliative care interventions in dementia.
DATA SOURCES: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches.
RESULTS: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found.
CONCLUSIONS: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.
Background: measuring the quality of primary palliative care for older people with dementia in different countries is important to identify areas where improvements can be made.
Objective: using quality indicators (QIs), we systematically investigated the overall quality of primary palliative care for older people with dementia in three different countries.
Design/setting: a mortality follow-back survey through nation- and region-wide representative Sentinel Networks of General Practitioners (GPs) in Belgium, Italy and Spain. GPs registered all patient deaths in their practice. We applied a set of nine QIs developed through literature review and expert consensus.
Subjects: patients aged 65 or older, who died non-suddenly with mild or severe dementia as judged by GPs (n = 874).
Results: findings showed significantly different QI scores between Belgium and Italy for regular pain measurement (mild dementia: BE = 44%, IT = 12%, SP = 50% | severe dementia: BE = 41%, IT = 9%, SP = 47%), acceptance of approaching death (mild: BE = 59%, IT = 48%, SP = 33% | severe: BE = 41%, IT = 21%, SP = 20%), patient-GP communication about illness (mild: BE = 42%, IT = 6%, SP = 20%) and involvement of specialised palliative services (mild: BE = 60%, IT = 20%, SP = 77%). The scores in Belgium differed from Italy and Spain for patient-GP communication about medical treatments (mild: BE = 34%, IT = 12%, SP = 4%) and repeated multidisciplinary consultations (mild: BE = 39%, IT = 5%, SP = 8% | severe: BE = 36%, IT = 10%, SP = 8%). The scores for relative-GP communication, patient death outside hospitals and bereavement counselling did not differ between countries.
Conclusion: while the countries studied differed considerably in the overall quality of primary palliative care, they have similarities in room for improvement, in particular, pain measurement and prevention of avoidable hospitalisations.
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.