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Background: Opioids, antipsychotics and hypnotics are recommended for comfort care in dying. We studied their prescription during the last 3 days in residents deceased in the long-term care facility (LTCF)., Methods: In a retrospective, cross-sectional survey in Belgium, England, Finland, Italy, the Netherlands and Poland, LTCFs, selected by proportional stratified random sampling, reported all deaths over the previous 3 months. The nurse most involved in the residents' care reviewed the chart for opioid, antipsychotic and hypnotic prescription, cause of death and comorbidities. Multivariable logistic regression was performed to adjust for resident characteristics., Results: Response rate was 81.6%. We included 1079 deceased residents in 322 LCTFs. Opioid prescription ranged from 18.5% (95% CI: 13.0-25.8) of residents in Poland to 77.9% (95% CI: 69.5-84.5) in the Netherlands, antipsychotic prescription from 4.8% (95% CI: 2.4-9.1) in Finland to 22.4% (95% CI: 14.7-32.4) in Italy, hypnotic prescription from 7.8% (95% CI: 4.6-12.8) in Finland to 47.9% (95% CI: 38.5-57.3) in the Netherlands. Differences in opioid, antipsychotic and hypnotic prescription between countries remained significant (P < 0.001) when controlling for age, gender, length of stay, cognitive status, cause of death in multilevel, multivariable analyses. Dying from cancer showed higher odds for receiving opioids (OR 3.51; P < 0.001) and hypnotics (OR 2.10; P = 0.010)., Conclusions: Opioid, antipsychotic and hypnotic prescription in the dying phase differed significantly between six European countries. Further research should determine the appropriateness of their prescription and refine guidelines especially for LTCF residents dying of non-cancer diseases.

Objectives: To elicit Quebec physicians' attitudes towards extending medical aid in dying (MAiD) to incompetent patients and to compare the attitudes of family physicians to those of other medical specialists., Methods: We conducted a postal survey among physicians caring for patients with dementia. We used hypothetical vignettes to elicit their attitudes towards MAiD and continuous deep sedation (CDS) to relieve suffering at end of life. Two patients were depicted in the vignettes: one with cancer eligible for MAiD and one with dementia. The generalized estimating equation approach was used to investigate factors associated with attitudes, including the stage of the illness (advanced vs terminal dementia) and the presence or absence of a prior written request., Results: A total of 136 physicians out of 653 returned the questionnaire. Physicians favoured CDS over MAiD for relieving suffering in the cancer vignette (93% vs 79%; p = 0.002). In advanced dementia, 45% of physicians supported giving the patient access to MAiD with a written request and 14% without such request. At the terminal stage of dementia, these proportions increased to 71% and 43%, respectively (p < 0.001), reaching 79% and 52% among family physicians. Support for CDS in terminal dementia was lower than in end-stage cancer (68% vs 93%; p < 0.001) and equal to MAiD with a written request (68% vs 71%; p = 0.623)., Conclusion: Many Quebec physicians support extending MAiD to incompetent patients with dementia to relieve suffering at the terminal stage. This finding will inform current deliberations as to whether MAiD should be extended to these patients.

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.

[This corrects the article DOI: 10.1371/journal.pone.0204120.].

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: Measuring the quality of palliative care in a systematic way using quality indicators can illuminate differences between patient groups., Aim: To investigate differences in the quality of palliative care in primary care between people who died of cancer and people who died of organ failure., Design: Mortality follow-back survey among general practitioners in Belgium, the Netherlands, and Spain (2013-2014), and Italy (2013-2015). A standardized registration form was used to construct quality indicators regarding regular pain measurement, acceptance of the approaching end of life, communication about disease-related topics with patient and next-of-kin; repeated multidisciplinary consultations; involvement of specialized palliative care; place of death; and bereavement counseling., Setting/participants: Patients (18+) who died non-suddenly of cancer, cardiovascular disease, or respiratory disease ( n = 2360)., Results: In all countries, people who died of cancer scored higher on the quality indicators than people who died of organ failure, particularly with regard to pain measurement (between 17 and 35 percentage-point difference in the different countries), the involvement of specialized palliative care (between 20 and 54 percentage points), and regular multidisciplinary meetings (between 12 and 24 percentage points). The differences between the patient groups varied by country, with Belgium showing most group differences (eight out of nine indicators) and Spain the fewest (two out of nine indicators)., Conclusion: People who died of organ failure are at risk of receiving lower quality palliative care than people who died of cancer, but the differences vary per country. Initiatives to improve palliative care should have different priorities depending on the healthcare and cultural context.

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.

Background: An ageing population in the EU leads to a higher need of long-term institutional care at the end of life. At the same time, healthcare costs rise while resources remain limited. Consequently, an urgency to extend our knowledge on factors affecting efficiency of long-term care facilities (LTCFs) arises. This study aims to investigate and explain variation in technical efficiency of end-of-life care within and between LTCFs of six EU countries: Belgium (Flanders), England, Finland, Italy, the Netherlands and Poland. In this study, technical efficiency reflects the LTCFs' ability to obtain maximal quality of life (QoL) and quality of dying (QoD) for residents from a given set of resource inputs (personnel and capacity)., Methods: Cross-sectional data were collected by means of questionnaires on deceased residents identified by LTCFs over a three-month period. An output-oriented data-envelopment analysis (DEA) was performed, producing efficiency scores, incorporating personnel and capacity as input and QoL and QoD as output. Scenario analysis was conducted. Regression analysis was performed on explanatory (country, LTCF type, ownership, availability of palliative care and opioids) and case mix (disease severity) variables., Results: 133 LTCFs of only one type (onsite nurses and offsite GPs) were considered in order to reduce heterogeneity. Variation in LTCF efficiency was found across as well as within countries. This variation was not explained by country, ownership, availability of palliative care or opioids. However, in the 'hands-on care at the bedside' scenario, i.e. only taking into account nursing and care assistants as input, Poland (p = 0.00) and Finland (p = 0.04) seemed to be most efficient., Conclusions: Efficiency of LTCFs differed extensively across as well as within countries, indicating room for considerable efficiency improvement. Our findings should be interpreted cautiously, as comprehensive comparative EU-wide research is challenging as it is influenced by many factors., Competing Interests: The authors have declared that no competing interests exist.

The increasing prevalence of euthanasia in Belgium has been linked to changing attitudes. Using National health survey data (N = 9651), we investigated Belgian adults' intention to ask a physician for euthanasia or continuous deep sedation in the hypothetical scenario of a terminal illness and examined its connection to sociodemographic and health characteristics. Respectively, 38.3 and 25.8% could envisage asking for euthanasia and continuous deep sedation. Those with very bad to fair subjective health and with depression more likely had an intention to ask for euthanasia, which suggests need for attention in the evaluation of requests from specific patient groups.

Euthanasia is a controversial and complex issue, especially when involving incompetent patients. On December 10, 2015, Quebec became the first Canadian province to give access to medical aid in dying (MAiD) (ie, euthanasia performed by a physician) to competent patients who satisfy strictly defined criteria. Less than 2 years later, Quebec is considering extending MAiD to incompetent patients who made an advance request. With the objective of contributing scientific data to current societal debates, we conducted a survey among 471 informal caregivers of persons with dementia, reached through Alzheimer Societies. We used a series of vignettes featuring a person with Alzheimer disease to investigate respondents' attitudes towards MAiD. The response rate was 69%. Two-thirds [68%; 95% confidence interval, 63%-73%] found it acceptable to extend MAiD to an incompetent patient at an advanced stage of Alzheimer disease who had made a written request while competent, and 91% (95% confidence interval, 87%-94%) found it acceptable at the terminal stage. Self-determination was the most widely endorsed argument in favor of access to MAiD for incompetent patients. Findings suggest strong support among informal caregivers for extending MAiD to incompetent patients, provided they are terminally-ill and had made a written request before losing capacity.

Background: Advance care planning (ACP) is a continuous, dynamic process of reflection and dialogue between an individual, those close to them and their healthcare professionals, concerning the individual's preferences and values concerning future treatment and care, including end-of-life care. Despite universal recognition of the importance of ACP for people with dementia, who gradually lose their ability to make informed decisions themselves, ACP still only happens infrequently, and evidence-based recommendations on when and how to perform this complex process are lacking. We aimed to develop evidence-based clinical recommendations to guide professionals across settings in the practical application of ACP in dementia care., Methods: Following the Belgian Centre for Evidence-Based Medicine's procedures, we 1) performed an extensive literature search to identify international guidelines, articles reporting heterogeneous study designs and grey literature, 2) developed recommendations based on the available evidence and expert opinion of the author group, and 3) performed a validation process using written feedback from experts, a survey for end users (healthcare professionals across settings), and two peer-review groups (with geriatricians and general practitioners)., Results: Based on 67 publications and validation from ten experts, 51 end users and two peer-review groups (24 participants) we developed 32 recommendations covering eight domains: initiation of ACP, evaluation of mental capacity, holding ACP conversations, the role and importance of those close to the person with dementia, ACP with people who find it difficult or impossible to communicate verbally, documentation of wishes and preferences, including information transfer, end-of-life decision-making, and preconditions for optimal implementation of ACP. Almost all recommendations received a grading representing low to very low-quality evidence., Conclusion: No high-quality guidelines are available for ACP in dementia care. By combining evidence with expert and user opinions, we have defined a unique set of recommendations for ACP in people living with dementia. These recommendations form a valuable tool for educating healthcare professionals on how to perform ACP across settings.

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: The need for increased use and timely initiation of palliative care for all people, not just those who die with cancer, has been advocated worldwide over the past decade., Aim: To investigate whether there has been a time trend in the use of palliative care services and the timing of their initiation for older people., Design: Mortality follow-back survey among general practitioners in a nationally representative Sentinel Network in 2005-2010, 2013 and 2014 in Belgium., Setting/participants: Of all their patients who died non-suddenly aged 65+ years, general practitioners reported sociodemographic and clinical data, use of any of the palliative care services available in Belgium and when the first of these services was initiated., Results: General practitioners identified 5344 deaths. Overall, palliative care service use increased from 39% in 2005 to 63% in 2014 ( p < 0.001). The use of a reference person for palliative care in a care home increased from 12% to 26% ( p < 0.001) and of a palliative homecare team from 14% to 17.5% ( p < 0.01), but hospital-based palliative care services did not increase. Controlling for sociodemographic characteristics, no differences were obtained over time in the proportion of cancer/non-cancer patients for whom they provided care. The timing of initiation of palliative care services remained unchanged at a median of 15 days before death., Conclusion: Palliative care service use has increased mostly in care homes, possibly as a result of policy changes, while hospital-based palliative care services lag behind. Contrary to recommendations, access for non-cancer patients may remain difficult and palliative care is often initiated late in the disease trajectory.

Purpose: This four-country study (Belgium, the Netherlands, Italy and Spain) examines prevalence and types of final transitions between care settings of cancer patients and the extent to which patient/family wishes are cited as a reason for the transition., Methods: Data were collected from the EUROSENTI-MELC study over a 2-year period. General practitioners within existing Sentinel Networks registered weekly all deaths of patients within practices using a standardized questionnaire. This registration included place of care in the final 3 months and wishes for the final transition to place of death. All non-sudden deaths due to cancer (+18 years) were included in the analyses., Results: We included 2048 non-sudden cancer deaths; 63% of patients had at least one transition between care settings in the final 3 months of life. 'Hospital death from home' (25-55%) and 'home death from hospital' (16-30%) were the most frequent types of final transitions in all countries. Patients' or families' wishes were mentioned as a reason for a final transition in 5-27% (P < 0.001) and 10-22% (P = 0.002) across countries., Conclusions: 'Hospital deaths from home' is the most prevalent final transition in three of four countries studied, in a significant minority of cases because of patient/family wishes., (© The Author 2016. Published by Oxford University Press on behalf of Faculty of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com)

Background: Alzheimer's disease and related disorders affect a growing number of people worldwide. Quality of life is generally good in the early stages of these diseases. However, many individuals fear living through the advanced stages. Such fears are triggering requests for medical assistance in dying (MAiD) by patients with dementia. Legislation was recently passed in Canada and the province of Quebec allowing MAiD at the explicit request of a patient who meets a set of eligibility criteria, including competence. Some commentators have argued that MAiD should be accessible to incompetent patients as well, provided appropriate safeguards are in place. Governments of both Quebec and Canada are currently considering whether MAiD should be accessible through written requests made in advance of loss of capacity., Objective: Aimed at informing the societal debate on this sensitive issue, this study will compare stakeholders' attitudes towards expanding MAiD to incompetent patients with dementia, the beliefs underlying stakeholders' attitudes on this issue, and the value they attach to proposed safeguards. This paper describes the study protocol., Methods: Data will be collected via a questionnaire mailed to random samples of community-dwelling seniors, relatives of persons with dementia, physicians, and nurses, all residing in Quebec (targeted sample size of 385 per group). Participants will be recruited through the provincial health insurance database, Alzheimer Societies, and professional associations. Attitudes towards MAiD for incompetent patients with dementia will be elicited through clinical vignettes featuring a patient with Alzheimer's disease for whom MAiD is considered towards the end of the disease trajectory. Vignettes specify the source of the request (from the patient through an advance request or from the patient's substitute decision-maker), manifestations of suffering, and how close the patient is to death. Arguments for or against MAiD are used to elicit the beliefs underlying respondents' attitudes., Results: The survey was launched in September 2016 and is still ongoing. At the time of submission, over 850 respondents have returned the questionnaire, mostly via mail., Conclusions: This study will be the first in Canada to directly compare views on MAiD for incompetent patients with dementia across key stakeholder groups. Our findings will contribute valuable data upon which to base further debate about whether MAiD should be accessible to incompetent patients with dementia, and if so, under what conditions., (©Gina Bravo, Claudie Rodrigue, Vincent Thériault, Marcel Arcand, Jocelyn Downie, Marie-France Dubois, Sharon Kaasalainen, Cees M Hertogh, Sophie Pautex, Lieve Van den Block. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 13.11.2017.)

Aim: To describe and compare end-of-life care for people with mild or severe dementia in general practice in Belgium, Italy and Spain, in terms of place of care, place of death, treatment aims, use of specialized palliative care and communication with general practitioners (GPs)., Methods: Cross-sectional retrospective survey was carried out of nationwide networks of GPs in Belgium, Italy and Spain, including patients who died aged 65 years or older in 2009-2011 and were judged by the GP to have had dementia (n = 1623)., Results: GPs reported a higher proportion of older people with severe dementia in Belgium (55%) than in Spain (46 %) and Italy (45 %), and a higher proportion of patients living in care homes (57% vs 18% and 13%, respectively). A palliative treatment aim was common in the last 3 months of life in all three countries. Specialized palliative care services were provided in 14% (Italy, severe dementia) to 38% (Belgium, severe dementia) of cases. Communication between GP and patient about illness-related topics occurred in between 50% (Italy) and 72% (Belgium) of cases of mild dementia, and 10% (Italy) to 32% (Belgium) of cases of severe dementia. Patient preferences for end-of-life care were known in a minority of cases. Few people (13-15 %) were transferred between care settings in the last week of life., Conclusions: Although overall treatment aims at the end of life are often aligned with a palliative care approach and transfer rates are low, there is room for improvement in end-of-life care for people with dementia in all countries studied, especially regarding early patient-GP communication. Geriatr Gerontol Int 2017; 17: 1667-1676., (© 2017 Japan Geriatrics Society.)

Background: In the last year of life, many older people rather avoid admissions to inpatient care facilities. We describe and compare such admissions in the last year of life of 5092 community-dwelling older people in 15 European countries (+Israel)., Methods: Proxy-respondents of the older people, who participated in the longitudinal SHARE study, reported on admissions to inpatient care facilities (hospital, nursing home or hospice) during the last year of their life. Multivariable regression analyses assessed associations between hospitalizations and personal/contextual characteristics., Results: The proportion of people who had been admitted at least once to an inpatient care facility in the last year of life ranged from 54% (France) to 76% (Austria, Israel, Slovenia). Admissions mostly concerned hospitalizations. Multivariable analyses showed that especially Austrians, Israelis and Poles had higher chances of being hospitalized. Further, hospitalizations were more likely for those being ill for 6 months or more (OR:1.67, CI:1.39-2.01), and less likely for persons aged 80+ (OR:0.54, CI:0.39-0.74; compared with 48-65 years), females (OR:0.74, CI:0.63-0.89) and those dying of cardiovascular diseases (OR:0.66, CI:0.51-0.86; compared with those dying of cancer)., Conclusions: Although healthcare policies increasingly stress the importance that people reside at home as long as possible, admissions to inpatient care facilities in the last year of life are relatively common across all countries. Furthermore, we found a striking variation concerning the proportion of admissions across countries which cannot only be explained by patient needs. It suggests that such admissions are at least partly driven by system-level or cultural factors., (© The Author 2017. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.)

Objectives: Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation against the European Association for Palliative Care (EAPC) palliative sedation Framework and assess the developmental quality of these guidelines using the Appraisal Guideline Research and Evaluation (AGREE II) instrument., Methods: Using the PRISMA criteria, we searched multiple databases (PubMed, CancerLit, CINAHL, Cochrane Library, NHS Evidence and Google Scholar) for relevant guidelines, and selected those written in English, Dutch and Italian; published between January 2000 and March 2016., Results: Of 264 hits, 13 guidelines-Belgium, Canada (3), Ireland, Italy, Japan, the Netherlands, Norway, Spain, Europe, and USA (2) were selected. 8 contained at least 9/10 recommendations published in the EAPC Framework; 9 recommended 'pre-emptive discussion of the potential role of sedation in end-of-life care'; 9 recommended 'nutrition/hydration while performing sedation' and 8 acknowledged the need to 'care for the medical team'. There were striking differences in terminologies used and in life expectancy preceding the practice. Selected guidelines were conceptually similar, comparing closely to the EAPC Framework recommendations, albeit with notable variations., Conclusions: Based on AGREE II, 3 guidelines achieved top scores and could therefore be recommended for use in this context. Also, domains 'scope and purpose' and 'editorial independence' ranked highest and lowest, respectively-underscoring the importance of good reportage at the developmental stage., Competing Interests: Competing interests: None declared., (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: 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: In cost-effectiveness analyses in healthcare, Quality-Adjusted Life Years are often used as outcome measure of effectiveness. However, there is an ongoing debate concerning the appropriateness of its use for decision-making in palliative care., Aim: To systematically map pros and cons of using the Quality-Adjusted Life Year to inform decisions on resource allocation among palliative care interventions, as brought forward in the debate, and to discuss the Quality-Adjusted Life Year's value for palliative care., Design: The integrative review method of Whittemore and Knafl was followed. Theoretical arguments and empirical findings were mapped., Data Sources: A literature search was conducted in PubMed, EMBASE, and CINAHL, in which MeSH (Medical Subject Headings) terms were Palliative Care, Cost-Benefit Analysis, Quality of Life, and Quality-Adjusted Life Years., Findings: Three themes regarding the pros and cons were identified: (1) restrictions in life years gained, (2) conceptualization of quality of life and its measurement, including suggestions to adapt this, and (3) valuation and additivity of time, referring to changing valuation of time. The debate is recognized in empirical studies, but alternatives not yet applied., Conclusion: The Quality-Adjusted Life Year might be more valuable for palliative care if specific issues are taken into account. Despite restrictions in life years gained, Quality-Adjusted Life Years can be achieved in palliative care. However, in measuring quality of life, we recommend to-in addition to the EQ-5D- make use of quality of life or capability instruments specifically for palliative care. Also, we suggest exploring the possibility of integrating valuation of time in a non-linear way in the Quality-Adjusted Life Year.

Chronic obstructive pulmonary disease and lung cancer are leading causes of death with comparable symptoms at the end of life. Cross-national comparisons of place of death, as an important outcome of terminal care, between people dying from chronic obstructive pulmonary disease and lung cancer have not been studied before. We collected population death certificate data from 14 countries (year: 2008), covering place of death, underlying cause of death, and demographic information. We included patients dying from lung cancer or chronic obstructive pulmonary disease and used descriptive statistics and multivariable logistic regressions to describe patterns in place of death. Of 5,568,827 deaths, 5.8% were from lung cancer and 4.4% from chronic obstructive pulmonary disease. Among lung cancer decedents, home deaths ranged from 12.5% in South Korea to 57.1% in Mexico, while hospital deaths ranged from 27.5% in New Zealand to 77.4% in France. In chronic obstructive pulmonary disease patients, the proportion dying at home ranged from 10.4% in Canada to 55.4% in Mexico, while hospital deaths ranged from 41.8% in Mexico to 78.9% in South Korea. Controlling for age, sex, and marital status, patients with chronic obstructive pulmonary disease were significantly less likely die at home rather than in hospital in nine countries. Our study found in almost all countries that those dying from chronic obstructive pulmonary disease as compared with those from lung cancer are less likely to die at home and at a palliative care institution and more likely to die in a hospital or a nursing home. This might be due to less predictable disease trajectories and prognosis of death in chronic obstructive pulmonary disease., Lung Disease: IMPROVING END-OF-LIFE CARE: Structured palliative care similar to that offered to cancer sufferers should be in place for patients with chronic lung disease. Joachim Cohen at Vrije University in Brussels and co-workers examined international death certificate data collected from 14 countries to determine place of death for patients with lung cancer and chronic obstructive pulmonary disease (COPD). While patients with COPD suffer similar symptoms to lung cancer in their final days, few COPD patients receive palliative care or achieve the common wish of dying at home. This may be partly due to the inherent unpredictability of final-stage COPD compared with lung cancer. Cohen's team found that, with the exception of Italy, Spain, and Mexico, patients with COPD were significantly more likely to die in hospital than at home. They highlight the need for improved COPD palliative care provision.

Objectives: There is growing evidence of the potential effectiveness of advance care planning. Yet important knowledge gaps remain regarding the preconditions for successful implementation of advance care planning in the nursing home setting. We aim to identify the preconditions related to successful advance care planning in the nursing home setting. By specifying those, we would be able to make well-founded choices for the future design and planning of advance care planning intervention programs., Design: A systematic review., Data Sources: PubMed, PsycINFO, EMBASE and CINAHL., Review Methods: Two authors independently screened publications. One author assessed methodological quality and extracted textual data, which was double-checked for a random sample. We extracted textual data and used thematic synthesis to identify "preconditions", defined as requirements, conditions and elements necessary to achieve the desired outcome of advance care planning, i.e. attaining concordance between residents' preferences and actual care or treatment received at the end of life., Main Findings: Based on 38 publications, we identified 17 preconditions at five different levels: resident, family, health-care professional, facility and community. Most preconditions were situated on multiple levels but the majority addressed professionals and the nursing home itself. We summarized preconditions in five domains: to have sufficient knowledge and skills, to be willing and able to participate in advance care planning, to have good relationships, to have an administrative system in place, and contextual factors supporting advance care planning within the nursing home., Conclusion: There are multiple preconditions related to successfully implementing advance care planning in the complex nursing home setting that operate at micro, meso and macro level. Future interventions need to address these multiple domains and levels in a whole-system approach in order to be better implementable and more sustainable, while simultaneously target the important role of the health-care professional and the facility itself., (Copyright © 2016 Elsevier Ltd. All rights reserved.)

Background: Research on the costs of healthcare provision has so far focused on insurer costs rather than out-of-pocket costs. Out-of-pocket costs may be important to patients making medical decisions., Aim: To investigate the self-reported out-of-pocket costs associated with healthcare in the last year of life of older adults in Europe., Design: A post-death survey, part of the Survey of Health, Ageing, and Retirement in Europe, completed by proxy respondents in four waves from 2005 to 2012., Setting/participants: Proxy respondents for 2501 deceased adults of 55 years or over. Data from 13 European countries and four waves from 2005 to 2012 were used., Results: The proportion of people with out-of-pocket costs ranged from 21% to 96% in different European Union countries. Out-of-pocket costs ranged from 2% to 25% of median household income. Secondary and institutional care was most often the largest contributor to out-of-pocket costs, with care received in a care home being the most expensive type of care in 11 of 13 countries. Multilevel analyses showed that limitations in more than two activities of daily living (coefficient = 6.47, 95% confidence interval = 1.81-11.14) and a total hospitalization time of 3-6 months (coefficient = 14.66; 95% confidence interval = 0.97-28.35) or more than 6 months (coefficient = 31.01; 95% confidence interval = 11.98-50.15) were associated with higher out-of-pocket costs. In total, 24% of the variance on a country level remained unexplained., Conclusion: Variation in out-of-pocket costs for healthcare in the last year of life between European countries indicates that countries face different challenges in making healthcare in the last year of life affordable for all.

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.)

The early integration of specialist palliative care has been shown to benefit the quality of life of patients with advanced cancer. In order to explore whether other seriously ill people and people at even earlier phases would also benefit from early palliative care, we conducted 18 qualitative interviews with people having cancer, chronic obstructive lung disease, heart failure, or dementia at different phases of the illness trajectory about how they experienced care needs related to their disease from diagnosis onward. Respondents experienced needs within the different domains of palliative care at different stages of the illness and different illness types or duration of the illness. This study contributes to the understanding of primary care needs of patients for whom palliative care (not necessarily specialized palliative care) could be beneficial., (© The Author(s) 2015.)

Background: With an increasing number of people dying in old age, collaboration between palliative care and geriatric medicine is increasingly being advocated in order to promote better health and health care for the increasing number of older people. The aim of this study is to identify barriers and facilitators and good practice examples of collaboration and integration between palliative care and geriatric medicine from a European perspective., Methods: Four semi-structured group interviews were undertaken with 32 participants from 18 countries worldwide. Participants were both clinicians (geriatricians, GPs, palliative care specialists) and academic researchers. The interviews were transcribed and independent analyses performed by two researchers who then reached consensus., Results: Limited knowledge and understanding of what the other discipline offers, a lack of common practice and a lack of communication between disciplines and settings were considered as barriers for collaboration between palliative care and geriatric medicine. Multidisciplinary team working, integration, strong leadership and recognition of both disciplines as specialties were considered as facilitators of collaborative working. Whilst there are instances of close clinical working between disciplines, examples of strategic collaboration in education and policy were more limited., Conclusions: Improving knowledge about its principles and acquainting basic palliative care skills appears mandatory for geriatricians and other health care professionals. In addition, establishing more academic chairs is seen as a priority in order to develop more education and development at the intersection of palliative care and geriatric medicine.

Background: discussing end-of-life issues with nursing home residents and their relatives is needed to ensure patient-centred care near the end of life., Objectives: this study aimed to estimate the frequency of nursing home physicians discussing end-of-life issues with residents and their relatives and to investigate how discussing end-of-life issues was associated with care outcomes in the last month of life., Methods: post-mortem cohort study in a nationwide, representative sample of 78 nursing home facilities in France. Residents who died from non-sudden causes between 1 October 2013 and 31 May 2014 in these facilities were included (n = 674)., Results: end-of-life issues were discussed with at most 21.7% of the residents who died during the study period. In one-third of the situations (32.8%), no discussion about end-of-life-related topics ever occurred, either with the resident or with the relatives. Older people with severe dementia were less likely to have discussed more than three of the six end-of-life topics we investigated, compared with residents without dementia (OR = 0.17, 95% CI = 0.08-0.22). In the last month of life, discussing more than three end-of-life issues with the residents or their relatives was significantly associated with reduced odds of dying in a hospital facility (adjusted OR = 0.51, 95% CI = 0.33-0.79) and with a higher likelihood of withdrawing potentially futile life-prolonging treatments (adjusted OR = 2.37, 95% CI = 1.72-3.29)., Conclusion: during the last months of life, discussions about end-of-life issues occurred with only a minority of nursing home decedents, although these discussions may improve end-of-life care outcomes., (© The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com.)

Background: There is a paucity of cross-national population-based research on hospitalisations of people at the end of life. We aimed to compare, in four European countries, the frequency, time, length of and factors associated with hospitalisations in the last 3 months of life., Methods: Population-based mortality follow-back study via Sentinel Networks of general practitioners (GPs) in Belgium, the Netherlands, Italy and Spain. Using a standardised form, GPs recorded the care in the last 3 months of life of every deceased practice patient (≥18 years; 1 January 2009 to 31 December 2011). Sudden deaths were excluded., Results: We studied 4791 deaths that GPs described as non-sudden (66% of all registered deaths). Between 49% (the Netherlands) and 56% (Belgium) of patients were hospitalised at least once in the last 3 months of life. Readmissions were less frequent in the Netherlands (8%) than in the other countries (15-20%, p<0.001). Chances of being hospitalised increased over the last 10 days of life across countries but remained lowest in the Netherlands (Belgium: 21-37%, the Netherlands: 15-29%, Italy: 16-37%, Spain: 14-31%). Hospitalisations in the last week of life were more likely if patients resided at home rather than in a care home (ORs and 95% CIs Belgium: 1.94 (1.28 to 2.94); the Netherlands: 2.61 (1.10 to 6.18); Spain: 4.72 (1.64 to 13.57); non-significant in Italy) and less likely if the GP knew the patient's preferred place of death (ORs and 95% CIs Belgium: 0.52 (0.36 to 0.74); the Netherlands: 0.48 (0.25 to 0.91); Spain: 0.24 (0.13 to 0.44), non-significant in Italy)., Conclusions: The use of hospitals at the end-of-life increased over the last weeks of life of patients in all countries studied, but remained lowest in the Netherlands, as did the rate of readmissions. This may be due to gatekeeping by GPs who are trained and supported in preventing hospital readmissions at the end of life., (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: Studying where people die across countries can serve as an evidence base for health policy on end-of-life care. This study describes the place of death of people who died from diseases indicative of palliative care need in 14 countries, the association of place of death with cause of death, sociodemographic and healthcare availability characteristics in each country and the extent to which these characteristics explain country differences in the place of death., Methods: Death certificate data for all deaths in 2008 (age ≥1 year) in Belgium, Canada, the Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (Andalusia), the USA and Wales caused by cancer, heart/renal/liver failure, chronic obstructive pulmonary disease, diseases of the nervous system or HIV/AIDS were linked with national or regional healthcare statistics (N=2,220,997)., Results: 13% (Canada) to 53% (Mexico) of people died at home and 25% (the Netherlands) to 85% (South Korea) died in hospital. The strength and direction of associations between home death and cause of death, sociodemographic and healthcare availability factors differed between countries. Differences between countries in home versus hospital death were only partly explained by differences in these factors., Conclusions: The large differences between countries in and beyond Europe in the place of death of people in potential need of palliative care are not entirely attributable to sociodemographic characteristics, cause of death or availability of healthcare resources, which suggests that countries' palliative and end-of-life care policies may influence where people die., (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: To determine the extent to which members of the general population have talked to their physician about their wishes regarding medical treatment at the end of life, to describe the prevalence of advance directives on euthanasia, and to identify associated factors., Method: This study used data from the cross-sectional Health Interview Study (HIS) 2008 that collected data from a representative sample (N = 9651) of the Belgian population., Results: Of all respondents, 4.4 % had spoken to their physician about their wishes regarding medical treatment at the end of life, while 1.8 % had an advance directive on euthanasia. Factors positively associated with discussions regarding wishes for medical treatment at the end of life were being female, being older in age, having poorer health status and having more GP contacts. People older than 55 years and living in Flanders or Brussels were more likely than the youngest age categories to have an advance directive on euthanasia., Conclusion: Younger people, men, people living in the Walloon region of Belgium, people without a longstanding illness, chronic condition or disability and people with few GP contacts could represent a target group for education regarding advance care planning. Public information campaigns and education of physicians may help to enable the public and physicians to engage more in advance care planning.

Purpose: There is an increasing demand for the use of quality indicators in palliative care. With previous research about implementation in this field lacking, we aimed to evaluate the barriers to and facilitators of implementation., Methods: Three focus group interviews were organized with 21 caregivers from 18 different specialized palliative care services in Belgium. Four had already worked with the indicators during a pilot study. The focus group discussions were transcribed verbatim and analyzed using the thematic framework approach., Results: The caregivers anticipated that a positive attitude by the team towards quality improvement, the presence of a good leader, and the possible link between quality indicators and reimbursement might facilitate the implementation of quality indicators in specialized palliative care services. Other facilitators concerned the presence of a need to demonstrate quality of care, to perform improvement actions, and to learn from other caregivers and services in the field. A negative attitude by caregivers towards quality measurement and a lack of skills, time, and staff were mentioned as barriers to successful implementation., Conclusion: Palliative caregivers anticipate a number of opportunities and problems when implementing quality indicators. These relate to the attitudes of the team regarding quality measurement; the attitudes, knowledge, and skills of the individual caregivers within the team; and the organizational context and the economic and political context. Training in the advantages of quality indicators and how to use them is indispensable, as are structural changes in the policy concerning palliative care, in order to progress towards systematic quality monitoring.

Background: While palliative care is still often viewed as care for the final stage of life provided usually by specialist health care professionals, ideally, a palliative care approach would start at an earlier stage, with an important role being assigned to the family physician (FP). However, the description of what the FP's tasks would be in the integration of a palliative care approach into the care continuum remains vague., Objective: To explore the views of FPs, nurses and patients about the tasks of the FP in palliative care for people with a life-limiting illness from diagnosis onwards., Methods: We performed 18 interviews with people with cancer, organ failure or dementia and 6 focus groups, 4 with FPs and 2 with community nurses. Analysis was guided by a thematic content analysis procedure to categorize perceived tasks into overarching themes., Results: The tasks attributed to the FP could be categorized into four roles: FP as (i) available medical expert, (ii) communicator, (iii) collaborator and (iv) life-long learner committed to improving their palliative care competencies by training. Some perceived tasks varied depending on the different phases of illness (such as around diagnosis), while others were applicable throughout the whole illness course. Participants mostly had the same perception of the FPs' tasks, but there was disagreement on, for example, the timing of care planning., Conclusion: Our results help to elucidate the tasks and roles required of FPs to make integration of a palliative care approach into the care continuum possible., (© The Author 2015. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Context: There is need for tools to help detect pain or lack of comfort in persons unable to communicate. However, pain and (dis)comfort tools have not been compared, and it is unclear to what extent they discriminate between pain and other possible sources of discomfort, or even if items differ., Objectives: To map and compare items in tools that assess pain and the broader notion of discomfort or comfort in people with severe dementia or at the end of life., Methods: Using qualitative content analysis with six classifications, we categorized each item of four thoroughly tested observational pain tools (Pain Assessment in Advanced Dementia [PAINAD], Pain Assessment Checklist for Seniors with Limited Ability to Communicate [PACSLAC], Doloplus-2, and draft Pain Assessment in Impaired Cognition [PAIC]), and four discomfort tools (including distress, comfort, and quality of life in severe dementia or at the end of life; Discomfort Scale-Dementia Alzheimer Type [DS-DAT], Disability Distress Assessment Tool [DisDAT], End-of-Life in Dementia-Comfort Assessment in Dying with Dementia [EOLD-CAD], and Quality of Life in Late-Stage Dementia [QUALID] scale). We calculated median proportions to compare distributions of categories of pain and discomfort tools., Results: We found that, despite variable content across tools, items from pain and discomfort tools overlapped considerably. For example, positive elements such as smiling and spiritual items were more often included in discomfort tools but were not unique to these. Pain tools comprised more "mostly descriptive" (median 0.63 vs. 0.44) and fewer "highly subjective" items (0.06 vs. 0.18); some used time inconsistently, mixing present and past observations., Conclusion: This analysis may inform a more rigorous theoretical underpinning and (re)development of pain and discomfort tools and calls for empirical testing of a broad item pool for sensitivity and specificity in detecting and discriminating pain from other sources of discomfort., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: The proportion of older people is increasing, therefore their place of residence and place of care at the end of life are becoming increasingly important., Aim: To compare aspects of end-of-life care among older people in residential homes and home settings in the Netherlands., Design and Setting: Nationwide representative mortality follow-back study among GPs in the Netherlands., Method: The study included patients aged ≥65 years who died non-suddenly, whose longest place of residence in their last year of life was at home or in a residential home (n = 498). Differences were analysed using Pearson's χ(2) test, Mann-Whitney U tests, and multivariate logistic regression., Results: Controlling for the differences between the populations in home settings and residential homes, no differences were found in treatment goals, communication about end-of-life care, or use of specialised palliative care between the two settings. However, people living in a residential home were more likely to have received palliative care from a GP than people living at home (OR 2.84, 95% confidence interval [CI] = 1.41 to 5.07). In residential homes, people more often experienced no transfer between care settings (OR 2.76, 95% CI = 1.35 to 5.63) and no hospitalisations (OR 2.2, 95% CI = 1.04 to 4.67) in the last 3 months of life, and died in hospital less often (OR 0.78, 95% CI = 0.63 to 0.97) than those people living at home., Conclusion: Despite similar treatment goals, care in residential homes seems more successful in avoiding transfers and hospitalisation at the end of life. Especially since older people are encouraged to stay at home longer, measures should be taken to ensure they are not at higher risk of transfers and hospitalisations in this setting., (© British Journal of General Practice 2015.)

Background: Many people who might benefit from specialist palliative care services are not using them., Aim: We examined the use of these services and the reasons for not using them in a population in potential need of palliative care., Methods: We conducted a population-based survey regarding end-of-life care among physicians certifying a large representative sample (n = 6188) of deaths in Flanders, Belgium., Results: Palliative care services were not used in 79% of cases of people with organ failure, 64% of dementia and 44% of cancer. The most frequently indicated reasons were that 1) existing care already sufficiently addressed palliative and supportive needs (56%), 2) palliative care was not deemed meaningful (26%) and 3) there was insufficient time to initiate palliative care (24%). The reasons differed according to patient characteristics: in people with dementia the consideration of palliative care as not meaningful was more likely to be a reason for not using it; in older people their care needs already being sufficiently addressed was more likely to be a reason. For those patients who were referred the timing of referral varied from a median of six days before death (organ failure) to 16 days (cancer)., Conclusions: Specialist palliative care is not initiated in almost half of the people for whom it could be beneficial, most frequently because physicians deem regular caregivers to be sufficiently skilled in addressing palliative care needs. This would imply that the safeguarding of palliative care skills in this regular 'general' care is an essential health policy priority.

Background: Sedative drugs are often used at the end of life for different clinical indications, and sometimes sedation is not interrupted until the patient dies. The aim of this study was to estimate the prevalence of patients who died while deeply sedated in Italy in 2007., Methods: Cross-sectional survey which asked physicians about the last death that occurred among their assisted patients during the last year, and about their attitudes towards end-of-life decisions. All general practitioners (N=5,710) and a random sample of hospital physicians (N=8,950) from 14 Italian provinces were invited to participate., Results: The response rate was 20%. Among 1855 reported deaths, 1466 (79.2%) were classified by physicians as expected or non-sudden; 18.2% of these expected or non-sudden deaths occurred while the patient was deeply sedated. GPs were the least likely to report deep sedation, whereas anesthetists were the most likely. In 8% of cases, sedation occurred along with an abrupt increase in the dosage of opioids during the last day of life, reaching a dosage considered higher than necessary by the doctor. No association with positive attitudes of the physician towards physician assisted death was found, whereas reporting sedation was associated with a positive attitude towards respecting the choice of relatives to forgo life-sustaining treatment in the case of an incompetent patient., Conclusion: Our study confirms the high prevalence of patients in Italy who die while being deeply sedated and shows that different practices may converge under the same label. Careful descriptive language is needed.

Background: Transitions between care settings may be related to poor quality in end-of-life care. Yet there is a lack of cross-national population-based data on transitions at the end of life., Method: International mortality follow-back study with data collection in Belgium, Netherlands, Italy and Spain (2009-11) via existing representative epidemiological surveillance networks of general practitioners (GPs). All general practitioners reported weekly, on a standardized registration form, every deceased patient (≥18 years) in their practice and identified those who died 'non-suddenly'., Results: Among 4791 non-sudden deaths in Belgium, Netherlands, Italy and Spain, 59%, 55%, 60% and 58%, respectively, were transferred between care settings at least once in the final 3 months of life (10%, 8%, 10% and 13% in final 3 days of life); 10%, 5%, 8% and 12% were transferred three times or more (P < 0.001 in multivariate analyses adjusting for country differences in age, sex, cause of death, presence of dementia). In all countries, transitions were more frequent among patients residing at home (61-73%) than among patients residing in a care home (33-40%). Three months before death 5-7% of patients were in hospital, and this rose to 27-39% on the day of death. Patient wishes were cited as the reason for the last transition before death in 27%, 39%, 9% and 6% of cases in Belgium, Netherlands, Italy and Spain, respectively (P < 0.001)., Conclusion: End-of-life transitions between health care settings are common across EU countries, in particular late hospitalizations for people residing at home. Frequency, type and reasons for terminal hospitalizations vary between countries., (© The Author 2015. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.)

Context: Although dying peacefully is considered an important outcome of high-quality palliative care, large-scale quantitative research on dying peacefully and the factors associated with a peaceful death is lacking., Objectives: To gain insight into how many residents with dementia in long-term care facilities die peacefully, according to their relatives, and whether that assessment is correlated with observed physical and psychological distress., Methods: This was a retrospective cross-sectional study of deceased nursing home residents in a representative sample of long-term care facilities in Flanders, Belgium (2010). Structured post-mortem questionnaires were completed by relatives of the resident, who were asked to what extent they agreed that the resident "appeared to be at peace" during the dying process. Spearman correlation coefficients gave the correlations between physical and psychological distress (as measured using the Symptom Management at the End of Life with Dementia and Comfort Assessment in Dying at the End of Life with Dementia scales) and dying peacefully (as measured using the Quality of Dying in Long Term Care instrument)., Results: The sample comprised 92 relatives of deceased residents with dementia. In 54% of cases, relatives indicated that the resident died peacefully. Weak-to-moderate correlations (0.2-0.57) were found between dying peacefully and physical distress in the last week of life. Regarding psychological distress, weak-to-moderate correlations were found for both the last week (0.33-0.44) and last month of life (0.28-0.47)., Conclusion: Only half of the residents with dementia died peacefully as perceived by their relatives. Relatives' assessment of whether death was peaceful is related to both physical and psychological distress. Further qualitative research is recommended to gain more in-depth insights into the aspects on which relatives base their judgment of dying peacefully., (Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Giving the public and the patients good information enables them to make effective choices about their care. This study describes public preferences for both themselves and their relatives on receiving information on end-of-life care topics when faced with a life-limiting illness and to identify associated factors., Method: This study used data from the cross-sectional Health Interview Study (HIS) 2008 that collected data from a representative sample (N = 9651) of the Belgian population., Results: Around 82% of respondents wanted to be informed always about diagnosis, chances of cure and available treatments, 77% wanted to be informed on life expectancy, 72% on options regarding palliative care and 67% on possibilities of prolonging or shortening life. Around 55% wanted their relative to be informed always about diagnosis, chances of cure, life expectancy and different treatments available, whereas 50% wanted this in relation to the options regarding palliative care and 46% on the possibilities of prolonging or shortening life. Younger adults, people with more education and people with a regular GP were more likely to want to be informed always. Younger adults and women were less likely to want their relatives to be informed always., Conclusion: The majority of the Belgian population wants to be informed always about end-of-life care topics when faced with a life-limiting illness. Physicians should be aware of the desired level of information and tailor information to individual patient preferences. Understanding population preferences may help to tailor patient education and health promotion programmes appropriately., (© The Author 2014. Published by Oxford University Press on behalf of the European Public Health Association. All rights reserved.)

Background: Most people prefer to receive end-of-life care in familiar surroundings rather than in hospital. This study examines variation in place of death for people dying from Parkinson's disease (PD) across 11 European and non-European countries., Methods: Using death certificate data of 2008 for Belgium, France, Italy, Hungary, Czech Republic, New Zealand, USA, Canada, Mexico, South Korea and Spain for all deaths with PD as an underlying cause (ICD-10 code: G20) cross-national differences in place of death were examined. Associations between place of death and patient socio-demographic and regional characteristics were evaluated using multivariable binary logistic regression analyses., Results: The proportion of deaths in hospital ranged from 17% in the USA to 75% in South Korea. Hospital was the most prevalent place of death in France (40%), Hungary (60%) and South Korea; nursing home in New Zealand (71%), Belgium (52%), USA (50%), Canada (48%) and Czech Republic (44%); home in Mexico (73%), Italy (51%) and Spain (46%). The chances of dying in hospital were consistently higher for men (Belgium, France, Italy, USA, Canada), those younger than 80 years (Belgium, France, Italy, USA, Mexico), and those living in areas with a higher provision of hospital beds (Italy, USA)., Conclusions: In several countries a substantial proportion of deaths from PD occurs in hospitals, although this may not be the most optimal place of terminal care and death. The wide variation between countries in the proportion of deaths from PD occurring in hospital indicates a potential for many countries to reduce these proportions.

Euthanasia is legal in Belgium if due care criteria are met, which is judged by committees including physicians, ethicists, and jurists. We examined whether students in these disciplines differ in how they judge euthanasia as an acceptable act. A cross-sectional, anonymous e-mail survey revealed that they have similar attitudes and accept its legalization. Therefore, joint decision-making of physicians, ethicists, and lawyers regarding euthanasia seems to have a common attitudinal base in Belgium. However, they differ to some extent regarding the conditions they put forward for euthanasia being acceptable. Philosophy of life (religion) was an independent predictor of these attitudes.

Background: High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care., Aim: To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness., Design: Post-death study using random cluster sampling., Setting/participants: Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010)., Results: Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94)., Conclusion: Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents., (© The Author(s) 2014.)

Background: In the absence of a standardized, comprehensive and valid set of quality indicators for palliative care, we developed one for palliative care services in Belgium., Aim: This study evaluates its face validity, feasibility, discriminative power and usefulness., Design: We combined a quantitative analysis evaluating the answers with qualitative interviews with the contact persons of all participating services., Setting: The quality indicator set was implemented in nine palliative care services in Belgium involving a measurement procedure with questionnaires to the patients of the services, their professional caregivers, family carers and physicians., Results: The response rate was 56% for patients, 97% for caregivers, 56% for family carers and 65% for physicians, indicating good feasibility of the measurement procedure. During the interviews, caregivers found the indicator scores valid and none was extremely skewed, confirming their discriminative power. Still, 20 of the 80 indicators showed problems of feasibility and 5 of usefulness. One was discarded and the others were improved by changing either the formulation of the indicator or the questions used. Most participants expressed a desire for a smaller but still comprehensive set., Conclusion: Based on the results, minor adjustments were made to individual indicators, to the measurement tools and to the procedure used; the quality indicators are now ready for further evaluation and use across palliative care services in Belgium. As soon as these indicators are being used systematically, it will be possible to demonstrate and compare quality at the national and international levels and to evaluate improvement initiatives., (© The Author(s) 2014.)

Background: This is an international study across four European countries (Belgium[BE], the Netherlands[NL], Italy[IT] and Spain[ES]) between 2009 and 2011, describing and comparing care and care setting transitions provided in the last three months of life of cancer patients, using representative GP networks., Methods: General practitioners (GPs) of representative networks in each country reported weekly all non-sudden cancer deaths (+18y) within their practice. GPs reported medical end-of-life care, communication and circumstances of dying on a standardised questionnaire. Multivariate logistic regressions (BE as a reference category) were conducted to compare countries., Results: Of 2,037 identified patients from four countries, four out of five lived at home or with family in their last year of life. Over 50% of patients had at least one transition in care settings in the last three months of life; one third of patients in BE, IT and ES had a last week hospital admission and died there. In the last week of life, a treatment goal was adopted for 80-95% of those having palliation/comfort as their treatment goal. Cross-country differences in end-of-life care provision included GPs in NL being more involved in palliative care (67%) than in other countries (35%-49%) (OR 1.9) and end-of-life topics less often discussed in IT or ES. Preference for place of death was less often expressed in IT and ES (32-34%) than in BE and NL (49-74%). Of all patients, 88-98% were estimated to have distress from at least one physical symptom in the final week of life., Conclusion: Although palliative care was the main treatment goal for most cancer patients at the end of life in all four countries, frequent late hospital admissions and the symptom burden experienced in the last week of life indicates that further integration of palliative care into oncology care is required in many countries.

Background: Repeated and long hospitalizations of cancer patients at the end of life have been suggested as indicators of low quality of palliative care. Comparing the care delivered between different countries with the help of these quality indicators may identify opportunities to improve practice. Our objective is twofold: firstly, to describe the scores for the existing quality indicators "the percentage of time spent in hospital" and "the proportion of adult patients with more than one hospitalization in the last 30 days of life" in populations of cancer patients in four European countries and to see whether these countries met previously defined performance standards; secondly, to assess whether these scores are related to receiving palliative care from their GP., Methods: A mortality follow-back study was conducted, based on data recorded by representative GP networks for samples of cancer patients living at home who died non-suddenly in Belgium (n = 500), the Netherlands (n = 310), Italy (n = 764), and Spain (n = 224)., Results: The quality indicator score for "the percentage of time spent in hospital" in the last month of life was 14.1% in the Netherlands, 17.7% in Spain, 22.2% in Italy, and 24.6% in Belgium, which means that none of the countries met the performance standard of <10%. For the "proportion of patients with more than one hospitalization in the last 30 days of life", two countries met the performance standard of <4%: the Netherlands (0.6%) and Italy (3.1%). Spain had a score of 4.0% and Belgium scored 5.4%. When patients received palliative care from their GP, significantly less time was spent in hospital in the last month and fewer hospitalizations took place., Conclusions: European countries differ regarding the frequency and duration of hospitalizations of cancer patients in the last month of life. This reflects country-specific differences in the organization of palliative care and highlights the important role of the GP in palliative care provision.

Background: Hospitalizations of nursing home residents with dementia may not be uncommon. However, evidence from epidemiological studies outside the United States and knowledge about the circumstances of hospitalizations are lacking., Aim: To examine the proportion of nursing home residents with dementia hospitalized in the last month of life and factors associated with hospitalization., Design: The design is stratified cluster sampling survey. Nurses retrospectively registered demographic and dementia-related information about deceased residents with dementia. This included information about hospitalizations, persons involved in hospitalization decisions and type and content of information transferred when hospitalized., Setting/participants: Nursing home residents dying with dementia in Belgium (Flanders) in 2010., Results: In the final month of life, 19.5% of nursing home residents dying with dementia (N = 198) were hospitalized, including 4.6% admitted to an intensive care unit. For 12.2% of residents dying with dementia, a do-not-hospitalize advance directive was present, for 57.0%, a do-not-hospitalize general physician-order. Residents without a do-not-hospitalize general physician-order were more likely of being hospitalized (adjusted odds ratio: 3.4; 95% confidence interval: 1.3-8.7). None of the hospitalizations occurred at the request of the resident; 37% were at the request of relatives; curative or life-prolonging treatments were the most frequent reasons given. Information about the resident's nursing care or medical treatment was transferred in almost all hospitalizations, information about wishes and preferences for future care in 19%., Conclusion: Hospitalization in Belgian nursing home residents with dementia in the last month of life was common. Documentation of do-not-hospitalize physician-orders in the resident's medical files may prevent hospitalizations., (© The Author(s) 2014.)

Background: The rising number of deaths from cancer and other life-limiting illnesses is accompanied by a growing number of family carers who provide long-lasting care, including end-of-life care. This population-based epidemiological study aimed to describe and compare in four European countries the prevalence of and factors associated with physical or emotional overburden and difficulties in covering care-related costs among family carers of people at the end of life., Methods: A cross-national retrospective study was conducted via nationwide representative sentinel networks of general practitioners (GPs). Using a standardized form, GPs in Belgium, The Netherlands, Italy and Spain recorded information on the last 3 months of life of every deceased adult practice patient (1 January 2009-31 December 2010). Sudden deaths were excluded., Results: We studied 4466 deaths. GPs judged family carers of 28% (Belgium), 30% (The Netherlands), 35% (Spain) and 71% (Italy) of patients as physically/emotionally overburdened (P < 0.001). For 8% (Spain), 14% (Belgium), 36% (The Netherlands) and 43% (Italy) patients, GPs reported difficulties in covering care-related costs (P < 0.001). Patients <85 years of age (Belgium, Italy) had higher odds of having physically/emotionally overburdened family carers and financial burden. Death from non-malignant illness (vs. cancer) (Belgium and Italy) and dying at home compared with other locations (The Netherlands and Italy) were associated with higher odds of difficulties in covering care-related costs., Conclusion: In all countries studied, and particularly in Italy, GPs observed a considerable extent of physical/emotional overburden as well as difficulties in covering care-related costs among family carers of people at the end of life. Implications for health- and social care policies are discussed., (© The Author 2014. Published by Oxford University Press on behalf of the European Public Health Association.)

Aim: This study aimed to explore clinical and care-related factors associated with fulfilling cancer patients' preference for home death across four countries: Belgium (BE), The Netherlands (NL), Italy (IT), and Spain (ES)., Methods: A mortality follow-back study was undertaken from 2009 to 2011 via representative networks of general practitioners (GPs). The study included all patients aged 18 and over who had died of cancer and whose home death preference and place of death were known by the GP. Factors associated with meeting home death preference were tested using multivariable logistic regressions., Results: Among 2,048 deceased patients, preferred and actual place of death was known in 42.6 percent of cases. Home death preference met ranged from 65.5 to 90.9 percent. Country-specific factors included older age in BE, and decision-making capacity and being female in the NL. GPs' provision of palliative care was positively associated with meeting home death preference. Odds ratios (ORs) were: BE: 9.9 (95 percent confidence interval [CI] 3.7-26.6); NL: 9.7 (2.4-39.9); and IT: 2.6 (1.2-5.5). ORs for Spain are not shown because a multivariate model was not performed., Conclusion: Those who develop policy to facilitate home death need to examine available resources for primary end-of-life care.

Background: Sedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials. According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation., Methods and Design: A multidisciplinary and international group of palliative care researchers, identified themes and clinical issues on palliative sedation based on expert consultations and evidence drawn from the EAPC (European Association of Palliative Care) framework for palliative sedation and AGREE II (Appraisal Guideline Research and Evaluation) instrument for guideline assessment. The most relevant themes were selected and built into a comprehensive checklist. This was tested on people working closely with practitioners and patients, for user-friendliness and comprehensibility, and modified where necessary. Next, a systematic search was conducted for guidelines in English, Dutch, Flemish, or Italian. The search was performed in multiple databases (PubMed, CancerLit, CNAHL, Cochrane Library, NHS Evidence and Google Scholar), and via other Internet resources. Hereafter, the final version of the checklist will be used to extract data from selected literature, and the same will be compiled, entered into SPSS, cleaned and analysed systematically for publication., Discussion: We have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and the approach will contribute to rigorous and systematic comparison of international guidelines on any challenging topic such as this. Results from the study will provide valuable insights into common core elements and differences between the selected guidelines, and the extent to which recommendations are derived from, or match those in the EAPC framework. The outcomes of the study will be disseminated via peer-reviewed journals and directly to appropriate audiences.