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Background: In the Netherlands, euthanasia has been regulated by law since 2002. In the past decade, a growing number of persons with dementia requested for euthanasia, and more requests were granted. A euthanasia request from a patient with advanced dementia (PWAD) can have a major impact on a general practitioner (GP). We aimed to get insights in the views of Dutch GPs on euthanasia concerning this patient group. Methods: A postal survey was sent to 894 Dutch GPs. Questions were asked about a case vignette about a PWAD who was not able to confirm previous wishes anymore. Quantitative data were analyzed with descriptive statistics. Results: Of the 894 GPs approached, 422 (47.3%) completed the survey. One hundred seventy-eight GPs (42.2%) did not agree with the statement that an Advance Euthanasia Directive (AED) can replace an oral request if communication with the patient concerned has become impossible. About half of the respondents (209; 49.5%) did not agree that the family can initiate a euthanasia trajectory, 95 GPs (22.5%) would accept such a family initiative and 110 GPs (26.1%) would under certain conditions. Discussion: In case of a PWAD, when confirming previous wishes is not possible anymore, about half of the Dutch GPs would not accept an AED to replace verbal or non-verbal conformation nor consider performing euthanasia; a minority would. Our study shows that, probably due to the public debate and changed professional guidelines, conflicting views have arisen among Dutch GPs about interpretation of moral, ethical values considering AED and PWADs. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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

Background: General practitioners (GPs) are advised to offer advance care planning (ACP) to people with dementia (PWD). In a randomized controlled trial, an educational intervention for GPs aimed at initiating and optimizing ACP proved to be effective. During the intervention most GPs were accompanied by their practice nurse (PN). To provide insights into the intervention's successful components and what could be improved, we conducted a process evaluation and explored implementation, mechanisms of impact and contextual factors. Methods: We used the Medical Research Council guidance for process evaluations. Implementation was explored identifying reach and acceptability. We performed descriptive analyses of participants' characteristics; selection, inclusion and intervention attendance; a GP post-intervention survey on initiating ACP; a post intervention focus group with trainers of the intervention. Mechanisms of impact were explored identifying adoption and appropriateness. We used: participants' intervention ratings; a GP post-intervention survey on conducting ACP; ACP documentation in PWD's medical files; post-intervention interviews with PWD/FC dyads. All data was used to identify contextual factors. Results: The intervention was implemented by a small percentage of the total Dutch GP population invited, who mostly included motivated PWD/FC dyads with relatively little burden, and PWD with limited cognitive decline. The mechanisms of impact for GPs were: interactively learning to initiate ACP with training actors with a heterogeneous group of GPs and PNs. For PWD/FCs dyads, discussing non-medical preferences was most essential regarding their SDM experience and QoL. Some dyads however found ACP stressful and not feasible. Younger female GPs more often initiated ACP. Male PWD and those with mild dementia more often had had ACP. These characteristics and the safe and intimate training setting, were important contextual facilitators. Conclusion: We recommend Interventions aimed at improving ACP initiation with PWD by GPs to include interactive components and discussion of non-medical preferences. A safe environment and a heterogeneous group of participants facilitates such interventions. However, in practice not all FC/PWD dyads will be ready to start. Therefore, it is necessary to check their willingness when ACP is offered. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]