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Background: Some people experience exceptionally severe bereavement grief, and this level of post-death grief could potentially be the result of a low quality dying process. Aims: A pilot study was conducted to determine if a relationship exists between perceived death quality and bereavement grief intensity. Methods: A questionnaire was developed and posted online for data on bereavement grief intensity, perceived death quality, and decedent and bereaved person characteristics. Data from 151 Canadian volunteers were analysed using bi-variate and multiple linear regression tests. Findings: Half had high levels of grief, and over half rated the death as more bad than good. Perceived death quality and post-death grief intensity were close to being negatively correlated. Conclusion: These findings indicate research is needed to explore possible connections between bereavement grief and the survivor's perceptions of whether a good or bad death took place. In the meantime, it is important for palliative care nurses to think of the quality of the dying process as being potentially very impactful on the people who will be left to grieve that death. [ABSTRACT FROM AUTHOR]

Information is needed on the incidence and prevalence of bereavement grief, and factors associated with severe or prolonged grief. Among 1,208 representative Canadian adults, 96% had experienced bereavement grief and 78% were actively grieving at interview. Grief levels were higher among women, Protestants, and Catholics, when the death was under 2 years previously, when a spouse, parent, or child had died, and when the perceived death quality was lower. This study reveals the importance of good deaths; they are essential for dying people and also those who mourn their deaths. [ABSTRACT FROM AUTHOR]

Background: Volunteers fulfil several roles in supporting terminally ill people and their relatives and can positively influence quality of care. Healthcare in many countries faces resource constraints and some governments now expect communities to provide an increasing proportion of palliative care. However, systematic insights into volunteer presence, tasks and training and organisational challenges for volunteerism are lacking. Aim: Describe organised volunteerism in palliative direct patient care across the Flemish healthcare system (Belgium). Design: A cross-sectional postal survey using a self-developed questionnaire was conducted with 342 healthcare organisations. Setting/participants: The study included full population samples of palliative care units, palliative day-care centres, palliative home care teams, medical oncology departments, sitting services, community home care services and a random sample of nursing homes. Results: Responses were obtained for 254 (79%) organisations; 80% have volunteers providing direct patient care. Psychosocial, signalling and existential care tasks were the most prevalent volunteer tasks. The most cited organisational barriers were finding suitable (84%) and new (80%) volunteers; 33% of organisations offered obligatory training (75% dedicated palliative care, 12% nursing homes). Differences in volunteer use were associated with training needs and prevalence of organisational barriers. Conclusion: Results suggest potential for larger volunteer contingents. The necessity of volunteer support and training and organisational coordination of recruitment efforts is emphasised. Organisations are encouraged to invest in adequate volunteer support and training. The potential of shared frameworks for recruitment and training of volunteers is discussed. Future research should study volunteerism at the volunteer level to contrast with organisational data. [ABSTRACT FROM AUTHOR]

Background: The treatment of advanced cancer often involves potentially life-shortening end-of-life decisions (ELDs). This study aimed to examine the prevalence and characteristics of ELDs in different cancer types.Methods: A nationwide death certificate study was conducted based on a large random sample of all deaths in Flanders, Belgium, between 1 January and 30 June 2013. All cancer deaths were selected (n = 2392). Attending physicians were sent a questionnaire about ELDs and the preceding decision-making process.Results: The response rate was 58.3%. Across cancer types, a non-treatment decision occurred in 7.6-14.0%, intensified pain and symptom alleviation in 37.5-41.7%, euthanasia or physician-assisted suicide in 8.7-12.6%, and life shortening without explicit patient request in 1.0-2.4%. ELD prevalence did not differ significantly by cancer type. Reasons for ELDs were most frequently patient's physical suffering and lack of prospect of improvement. 'Anticipated further suffering' and 'unbearable situation for relatives' were reasons more often reported in haematological cancer than in other cancer types. Patient, family, and caregiver involvement in decision-making did not differ across cancer types.Conclusions: Euthanasia or physician-assisted suicide rates were relatively high in all cancer types. Neither the prevalence of ELDs nor characteristics of the decision-making process differed substantially between cancer types. This indicates a uniform approach to end-of-life care, including palliative care, across oncological settings. [ABSTRACT FROM AUTHOR]

Background: With over 1 million HIV-related deaths annually, quality end-of-life care remains a priority. Given strong public preference for home death, place of death is an important consideration for quality care. This 11 country study aimed to i) describe the number, proportion of all deaths, and demographics of HIV-related deaths; ii) identify place of death; iii) compare place of death to cancer patients iv), determine patient/health system factors associated with place of HIV-related death.Methods: In this retrospective analysis of death certification, data were extracted for the full population (ICD-10 codes B20-B24) for 1-year period: deceased's demographic characteristics, place of death, healthcare supply.Results: i) 19,739 deaths were attributed to HIV. The highest proportion (per 1000 deaths) was for Mexico (9.8‰), and the lowest Sweden (0.2‰). The majority of deaths were among men (75%), and those aged <50 (69.1%). ii) Hospital was most common place of death in all countries: from 56.6% in the Netherlands to 90.9% in South Korea. The least common places were hospice facility (3.3%-5.7%), nursing home (0%-17.6%) and home (5.9%-26.3%).iii) Age-standardised relative risks found those with HIV less likely to die at home and more likely to die in hospital compared with cancer patients, and in most countries more likely to die in a nursing home. iv) Multivariate analysis found that men were more likely to die at home in UK, Canada, USA and Mexico; a greater number of hospital beds reduced the likelihood of dying at home in Italy and Mexico; a higher number of GPs was associated with home death in Italy and Mexico.Conclusions: With increasing comorbidity among people ageing with HIV, it is essential that end-of-life preferences are established and met. Differences in place of death according to country and diagnosis demonstrate the importance of ensuring a "good death" for people with HIV, alongside efforts to optimise treatment. [ABSTRACT FROM AUTHOR]

Background: A substantial amount of aggressive life-prolonging treatments in the final stages of life has been reported for people with progressive life-shortening conditions. Monitoring appropriate and inappropriate end-of-life care is an important public health challenge and requires validated quality indicators. Aim: To develop indicators of appropriate and inappropriate end-of-life care for people with cancer, chronic obstructive pulmonary disease or Alzheimer’s disease, measurable with population-level administrative data. Design: modified RAND/UCLA appropriateness method. Setting/participants: Potential indicators were identified by literature review and expert interviews and scored in a survey among three panels of experts (one for each disease group). Indicators for which no consensus was reached were taken into group discussions. Indicators with consensus among the experts were retained for the final quality indicator sets. Results: The final sets consist of 28 quality indicators for Alzheimer’s disease, 26 quality indicators for cancer and 27 quality indicators for chronic obstructive pulmonary disease. The indicator sets measure aspects of aggressiveness of care, pain and symptom treatment, specialist palliative care, place of care and place of death and coordination and continuity of care. Conclusion: We developed a comprehensive set of quality indicators of appropriate and inappropriate end-of-life care in people with Alzheimer’s disease, cancer or chronic obstructive pulmonary disease, to be used in population-level research. Our focus on administrative healthcare databases limits us to treatment and medication, excluding other important quality aspects such as communication, which can be monitored using complementary approaches. Nevertheless, our sets will enable an efficient comparison of healthcare providers, regions and countries in terms of their performance on appropriateness of end-of-life care. [ABSTRACT FROM AUTHOR]

Background: To implement the appropriate services and develop adequate interventions, detailed estimates of the needs for palliative care in the population are needed. Aim: To estimate the proportion of decedents potentially in need of palliative care across 12 European and non-European countries. Design: This is a cross-sectional study using death certificate data. Setting/participants: All adults (≽18 years) who died in 2008 in Belgium, Czech Republic, France, Hungary, Italy, Spain (Andalusia, 2010), Sweden, Canada, the United States (2007), Korea, Mexico, and New Zealand (N = 4,908,114). Underlying causes of death were used to apply three estimation methods developed by Rosenwax et al., the French National Observatory on End-of-Life Care, and Murtagh et al., respectively. Results: The proportion of individuals who died from diseases that indicate palliative care needs at the end of life ranged from 38% to 74%. We found important cross-country variation: the population potentially in need of palliative care was lower in Mexico (24%-58%) than in the United States (41%-76%) and varied from 31%-83% in Hungary to 42%-79% in Spain. Irrespective of the estimation methods, female sex and higher age were independently associated with the likelihood of being in need of palliative care near the end of life. Home and nursing home were the two places of deaths with the highest prevalence of palliative care needs. Conclusion: These estimations of the size of the population potentially in need of palliative care provide robust indications of the challenge countries are facing if they want to seriously address palliative care needs at the population level. [ABSTRACT FROM AUTHOR]

Background: Although the acute hospital setting is not considered to be an ideal place of death, many people are admitted to hospital at the end of life. Aim: To examine what proportion of terminal hospital admissions among their patients family physicians consider to have been avoidable and/or inappropriate; which patient, family physician and admission factors are associated with the perceived inappropriateness or avoidability of terminal hospital admissions; and which interventions could have prevented them, from the perspective of family physicians. Design: Survey among family physicians, linked to medical record data. Setting: Patients who had died non-suddenly in the acute hospital setting of a university hospital in Belgium between January and August 2014. Results: We received 245 completed questionnaires (response rate 70%) and 77% of those hospital deaths (n = 189) were considered to be non-sudden. Almost 14% of all terminal hospital admissions were considered to be potentially inappropriate, almost 14% potentially avoidable and 8% both, according to family physicians. The terminal hospital admission was more likely to be considered potentially inappropriate or potentially avoidable for patients who had died of cancer, when the patient's life expectancy at the time of admission was limited, by family physicians who had had palliative care training at basic, postgraduate or post-academic level, and when the admission was initiated by the patient, partner or other family. Conclusion: Timely communication with the patient about their limited life expectancy and the provision of better support to family caregivers may be important strategies in reducing the number of hospital deaths. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys.Conclusion: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC. [ABSTRACT FROM AUTHOR]

Some people experience more intense and prolonged bereavement grief after the death of a loved one. A mixed-methods study was undertaken out of concern that bereavement grief intensity may be associated with survivor perceptions of a "good" or "bad" death. The qualitative study phase was undertaken after a pilot study revealed bereavement grief intensity and perceived death quality were close to being negatively correlated (R=-.156, p=.06). Through interviewing 41 bereaved volunteers, bereavement was found to be an individualized, contextualized, and multifaceted experience, but with three themes emerging through constant-comparative analysis: (a) the huge loss and enormous gap in life as a result of the death of a loved one, (b) extreme acute grief, and (c) the uncertain step-laddered journey of grieving to bereavement recovery. This recovery is impacted by both good and bad aspects of the death or dying process, as well as good and bad after-death events and developments. [ABSTRACT FROM AUTHOR]

Background: The use of full-population databases is under-explored to study the use, quality and costs of end-of-life care. Using the case of Belgium, we explored: (1) which full-population databases provide valid information about end-of-life care, (2) what procedures are there to use these databases, and (3) what is needed to integrate separate databases. Methods: Technical and privacy-related aspects of linking and accessing Belgian administrative databases and disease registries were assessed in cooperation with the database administrators and privacy commission bodies. For all relevant databases, we followed procedures in cooperation with database administrators to link the databases and to access the data. Results: We identified several databases as fitting for end-of-life care research in Belgium: the InterMutualistic Agency's national registry of health care claims data, the Belgian Cancer Registry including data on incidence of cancer, and databases administrated by Statistics Belgium including data from the death certificate database, the socio-economic survey and fiscal data. To obtain access to the data, approval was required from all database administrators, supervisory bodies and two separate national privacy bodies. Two Trusted Third Parties linked the databases via a deterministic matching procedure using multiple encrypted social security numbers. Conclusion: In this article we describe how various routinely collected population-level databases and disease registries can be accessed and linked to study patterns in the use, quality and costs of end-of-life care in the full population and in specific diagnostic groups. [ABSTRACT FROM AUTHOR]

Objectives: To explore how GPs conceptualise advance care planning (ACP), based on their experiences with ACP in their practice. Methods: Five focus groups were held with 36 GPs. Discussions were analysed using a constant comparative method. Results: Four overarching themes in the conceptualisations of ACP were discerned: (1) the organisation of professional care required to meet patients’ needs, (2) the process of preparing for death and discussing palliative care options, (3) the discussion of care goals and treatment decisions, (4) the completion of advance directives. Within these themes, ACP was both conceptualised in terms of content of ACP and/or in terms of tasks for the GP. A specific task that was mentioned throughout the discussion of the four different themes was (5) the task of actively initiating ACP by the GP versus passively waiting for patients’ initiation. Conclusions: This study illustrates that GPs have varying conceptualisations of ACP, of which some are more limited to specific aspects of ACP. A shared conceptualisation and agreement on the purpose and goals of ACP is needed to ensure successful implementation, as well as a systematic integration of ACP in routine practice that could lead to a better uptake of all the important elements of ACP. [ABSTRACT FROM AUTHOR]

Background: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients' values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision-making, provide patients with a sense of control, and improve their quality of life.Methods/design: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients' quality of life at 2.5 months post-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients' preferences, patients' evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators.Discussion: Transferring the concept of ACP from care of the elderly to patients with advanced cancer, who on average are younger and retain their mental capacity for a larger part of their disease trajectory, is an important next step in an era of increased focus on patient centered healthcare and shared decision-making.Trial Registration: International Standard Randomised Controlled Trial Number: ISRCTN63110516. Date of registration: 10/3/2014. [ABSTRACT FROM AUTHOR]

Background: Most patients with life-limiting illnesses are treated and cared for over a long period of time in primary care and guidelines suggest that ACP discussions should be initiated in primary care. However, a practical model to implement ACP in general practice is lacking. Therefore, the objective of this study is to develop an intervention to support the initiation of ACP in general practice. Methods: We conducted a Phase 0-I study according to the Medical Research Council (MRC) Framework. Phase 0 consisted of a systematic literature review about the barriers and facilitators for GPs to engage in ACP, focus groups with GPs were held about their experiences, attitudes and concerns regarding initiating ACP in general practice and a review of ACP interventions to identify potential components for the development of our intervention. In Phase 1, we developed a complex intervention to support the initiation of ACP in general practice in patients at risk of deteriorating or dying, based on the results of Phase 0. The complex intervention and its components were reviewed and refined by two expert panels. Results: Phase 0 resulted in the identification of the factors inhibiting or enabling GPs' initiation of ACP and important components underpinning existing ACP interventions. Based on these findings, an intervention was developed in Phase 1 consisting of: (1) a training for GPs in initiating and conducting ACP discussions, (2) a register of patients eligible for ACP discussions, (3) an educational booklet on ACP for patients to prepare the ACP discussions that includes general information on ACP, a section on the role of GPs in the process of ACP and a prompt list, (4) a conversation guide to support GPs in the ACP discussions and (5) a structured documentation template to record the outcomes of discussions. Conclusion: Taking into account the barriers and facilitators for GPs to initiate ACP as well as the key factors underpinning successful ACP intervention in other health care settings, a complex intervention for general practice was developed, after gaining feedback from two expert panels. The feasibility and acceptability of the intervention will subsequently be tested in a Phase II study. [ABSTRACT FROM AUTHOR]

Purpose: The places of death for people who died of suicide were compared across eight countries and socio-demographic factors associated with home suicide deaths identified.Methods: Death certificate data were analyzed; using multivariable binary logistic regression to determine associations.Results: National suicide death rates ranged from 1.4 % (Mexico) to 6.4 % (South Korea). The proportion of suicide deaths occurring at home was high, ranging from 29.9 % (South Korea) to 65.8 % (Belgium). Being older, female, widowed/separated, highly educated and living in an urban area were risk factors for home suicide.Conclusions: Home suicide deaths need specific attention in prevention programs. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: In hospitals, where care is focused on cure and life prolongation, impending death is often recognized too late. Physician awareness of impending death is a prerequisite for communication with patients and relatives about dying in hospital and providing care that adequately addresses patients' needs. Objective: To examine to what extent physicians are aware of the impending death of their dying patients and if awareness is related with communication and medical care, with quality of life in the last 3 days and quality of dying. Design: Retrospective survey among hospital physicians after patient deaths. Setting/Subjects: Patients who died between June 2009 and February 2011 at Erasmus University Medical Center (Rotterdam, The Netherlands). Measurements: Physician self-reported awareness of impending death, communication with patients and relatives, medical care, quality of life in the last 3 days, and quality of dying. Results: The response rate was 44% ( n=228). Physicians reported that they had been aware of the impending death in 67% of their dying patients. If they had been aware, discussing death with patients and relatives was more likely, as well as changing the treatment goal into comfort care or withholding treatment and prescribing opioids in the last 3 days of life. When physicians had been aware of impending death, they rated the quality of dying higher. Conclusions: In two-thirds of deaths, hospital physicians had been aware of impending death of their dying patients. Physician awareness was related with more communication and more appropriate care in the last days of life. [ABSTRACT FROM AUTHOR]

Background: Most people prefer not to die in a hospital, and for those with palliative care needs, doing so may result in inappropriate care and poor outcomes. We examined place of death and factors associated with hospital death in a population eligible for palliative care. Methods: We used death certificate data to identify deaths from conditions eligible for palliative care and to examine place of death and demographic, socioeconomic and environmental characteristics associated with hospital death in Belgium in 2008. Results: Of all people eligible for palliative care (N = 44 229, i.e. 43.5% of all deaths), 51% died in hospital, 25% at home and 24% in long-term care settings. Of those officially living at home at the time of death, hospital death occurred in >60%; of those living in long-term care settings, this was 16%. Nine percent of those living at home alone at the time of death died in long-term care settings; of those living with others, this was 5%. In both, those living at home and those living in long-term care settings, hospital death was more likely in areas with higher availability of hospital beds and less likely in areas with higher availability of skilled nursing beds in long-term care settings. Conclusions: Hospital death is still common among those eligible for palliative care. The significant proportion of people living at home and dying in long-term care settings indicates the need for additional inpatient beds for terminal care in palliative care institutions. [ABSTRACT FROM AUTHOR]

The article presents information on a study to examine the proportion of nursing home residents with dementia who were admitted to hospital in the last month of life. The study found that 19.5% of nursing home residents in last stage of their with dementia were admitted to hospital and 4.6% of the patients were admitted to intensive care unit.

PURPOSE Family physicians play a pivotal role in providing end of life care and in enabling terminally ill patients to die in familiar surroundings. The purpose of this study was to explore the family physicians' perceptions of their role and the difficulties they have in preventing and guiding hospital admissions at the end of life. METHODS Five focus groups were held with family physicians (N= 39) in Belgium. Discussions were transcribed verbatim and analyzed using a constant comparative approach. RESULTS Five key roles in preventing and guiding hospital admissions at the end of life were identified: as a care planner, anticipating future scenarios; as an initiator of decisions in acute situations, mostly in an advisory manner; as a provider of end-of-life care, in which competency and attitude is considered important; as a provider of support, particularly by being available during acute situations; and as a decision maker, taking overall responsibility. CONCLUSIONS Family physicians face many different and complex roles and difficulties in preventing and guiding hospital admissions at the end of life. Enhancing the family physician's role as a gatekeeper to hospital services, offering the physicians more end-of-life care training, and developing or expanding initiatives to support them could contribute to a lower proportion of hospital admissions at the end of life. [ABSTRACT FROM AUTHOR]

The article presents a study that analyzes the perspective of nursing home, hospitals and home care as well as of family physicians on hospital admissions at end of life and the circumstances by which they can be justified. The study is conducted through the use of focus groups consist of participants who regard death at home or in the nursing home as the most preferable outcome. The results of the study reveal the situations identified as situations where hospital admission is justified.

Background: Advance care planning is considered a central component of good quality palliative care and especially relevant for people who lose the capacity to make decisions at the end of life, which is the case for many nursing home residents with dementia. We set out to investigate to what extent (1) advance care planning in the form of written advance patient directives and verbal communication with patient and/or relatives about future care and (2) the existence of written advance general practitioner orders are related to the quality of dying of nursing home residents with dementia. Methods: Cross-sectional study of deaths (2010) using random cluster-sampling. Representative sample of nursing homes in Flanders, Belgium. Deaths of residents with dementia in a three-month period were reported; for each the nurse most involved in care, GP and closest relative completed structured questionnaires. Findings: We identified 101 deaths of residents with dementia in 69 nursing homes (58% response rate). A written advance patient directive was present for 17.5%, GP-orders for 56.7%. Controlling for socio-demographic/clinical characteristics in multivariate regression analyses, chances of having a higher mean rating of emotional well-being (less fear and anxiety) on the Comfort Assessment in Dying with Dementia scale were three times higher with a written advance patient directive and more specifically when having a do-not-resuscitate order (AOR 3.45; CI,1.1–11) than for those without either (AOR 2.99; CI,1.1–8.3). We found no association between verbal communication or having a GP order and quality of dying. Conclusion: For nursing home residents with dementia there is a strong association between having a written advance directive and quality of dying. Where wishes are written, relatives report lower levels of emotional distress at the end of life. These results underpin the importance of advance care planning for people with dementia and beginning this process as early as possible. [ABSTRACT FROM AUTHOR]

Background: The long-term and often lifelong relationship of general practitioners (GPs) with their patients is considered to make them the ideal initiators of advance care planning (ACP). However, in general the incidence of ACP discussions is low and ACP seems to occur more often for cancer patients than for those with dementia or heart failure. Objective: To identify the barriers, from GPs' perspective, to initiating ACP and to gain insight into any differences in barriers between the trajectories of patients with cancer, heart failure and dementia. Method: Five focus groups were held with GPs (n = 36) in Flanders, Belgium. The focus group discussions were transcribed verbatim and analyzed using the method of constant comparative analysis. Results: Three types of barriers were distinguished: barriers relating to the GP, to the patient and family and to the health care system. In cancer patients, a GP's lack of knowledge about treatment options and the lack of structural collaboration between the GP and specialist were expressed as barriers. Barriers that occurred more often with heart failure and dementia were the lack of GP familiarity with the terminal phase, the lack of key moments to initiate ACP, the patient's lack of awareness of their diagnosis and prognosis and the fact that patients did not often initiate such discussions themselves. The future lack of decision-making capacity of dementia patients was reported by the GPs as a specific barrier for the initiation of ACP. Conclusion: The results of our study contribute to a better understanding of the factors hindering GPs in initiating ACP. Multiple barriers need to be overcome, of which many can be addressed through the development of practical guidelines and educational interventions. [ABSTRACT FROM AUTHOR]

Background: For people with dementia dying from pneumonia, hospitalization at the end of life may be of little benefit and result in unfavourable outcomes such as hospital death. Objective: The aim of this study is to estimate the incidence of and factors associated with hospital death in people with dementia dying from pneumonia. Methods: We used death certificate data of all deaths in Belgium in 2008 (n = 101,685) to examine characteristics of deaths of people with dementia dying from pneumonia. Information about the urbanization level of the place of residence and the availability of hospital beds, residential (without continuous skilled nursing) and skilled nursing beds in long-term care settings was linked through the zip code of the place of residence. Results: Of people with dementia dying from pneumonia (n = 1,420), 47.2% died in hospital. Of those living in long-term care settings, 25.6% died in hospital. For people living in their own home, hospital death was more likely for those who were single (adjusted odds ratio (AOR) 2.83, 95% CI 1.30-6.16) and living in strongly urbanized areas (AOR 2.48, 95% CI 1.47-4.18). For those living in long-term care settings, hospital death was more likely in regions with higher availability of residential beds (without continuous skilled nursing) in long-term care settings (AOR per unit 1.02, 95% CI 1.01-1.03). Conclusion: Almost half of all those with dementia dying from pneumonia and a quarter of those living in long-term care settings died in a hospital. These results suggest shortcomings in the Belgian healthcare system in preventing potentially avoidable terminal hospitalizations in a vulnerable population. © 2013 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Objective. The aim of this systematic review is to identify the perceived factors hindering or facilitating GPs in engaging in advance care planning (ACP) with their patients about care at the end of life. Design. Studies from 1990 to 2011 were found in four electronic databases (PubMed, CINAHL, EMBASE, PsycINFO); by contacting first authors of included studies and key experts; and searching through relevant journals and reference lists. Studies were screened, graded for quality, and analysed independently by two authors; those reporting the perception by GPs of barriers and facilitators to engagement in ACP were included. Results. Eight qualitative studies and seven cross-sectional studies were included for data extraction. All barriers and facilitators identified were categorized as GP characteristics, perceived patient factors, or health care system characteristics. Stronger evidence was found for the following barriers: lack of skills to deal with patients' vague requests, difficulties with defining the right moment, the attitude that it is the patient who should initiate ACP, and fear of depriving patients of hope. Stronger evidence was found for the following facilitators: accumulated skills, the ability to foresee health problems in the future, skills to respond to a patient's initiation of ACP, personal convictions about who to involve in ACP, and a longstanding patient-GP relationship and the home setting. Conclusion. Initiation of ACP in general practice may be improved by targeting the GPs' skills, attitudes, and beliefs but changes in health care organization and financing could also contribute. [ABSTRACT FROM AUTHOR]

Background: The place of death is of considerable interest now, yet few studies have determined public preferences for place of end-of-life (EOL) care or final days of life. Objective: A survey was designed to answer three questions: (1) What are public preferences for the place of last days? (2) Is this place preference related to socio-demographic and other background characteristics? and (3) Is this place preference associated with specified previous death and dying experiences, the preparation of a living will or advance directive, or a viewpoint supportive of death hastening? Design: An experienced telephone survey company was commissioned to gain a representative population-based sample and survey participants. In mid-2010, 1203 adults were surveyed in Alberta. Descriptive statistics and multinomial logistic regression were conducted. Results: This survey revealed 70.8% preferred to be at home near death; while 14.7% preferred a hospice/palliative care facility, 7.0% a hospital, and 1.7% a nursing home; 5.7% had no stated preference. Marital status was the only predictor of place preference, with widowed persons more often indicating a preference for a hospital or hospice/palliative care facility. Conclusions: These findings suggest homes are the preferred EOL place now for the majority of Albertans, if not other citizens, while at the same time suggesting that marital and living arrangement realities temper EOL place choices and possibilities, with widows best realizing the need for assistance from others when dying. The widespread preference for home-based EOL care indicates public health interventions are needed to promote good home deaths. [ABSTRACT FROM AUTHOR]

Background: Since most patients prefer out-of-hospital death, place of death can be considered an indicator of end-of-life care quality. The study of trends in place of death is necessary to examine causes of shifts, to evaluate efforts to alter place of death and develop future policies. This study aims to examine past trends and future projections of place of death. Methods: Analysis of death certificates (decedents aged ≥ 1 year) in Belgium (Flanders and Brussels Capital region) 1998-2007. Trends in place of death were adjusted for cause of death, sociodemographic characteristics, environmental factors, numbers of hospital beds, and residential and skilled nursing beds in care homes. Future trends were based on age- and sex-specific mortality prognoses. Results: Hospital deaths decreased from 55.1% to 51.7% and care home deaths rose from 18.3% to 22.6%. The percentage of home deaths remained stable. The odds of dying in a care home versus hospital increased steadily and was 1.65 (95%CI:1.53-1.78) in 2007 compared to 1998. This increase could be attributed to the replacement of residential beds by skilled nursing beds. Continuation of these trends would result in the more than doubling of deaths in care homes and a decrease in deaths at home and in hospital by 2040. Conclusions: Additional end-of-life care resources in care homes largely explain the decrease in hospital deaths. Care homes will become the main locus of end-of-life care in the future. Governments should provide sufficient skilled nursing resources in care homes to fulfil the end-of-life care preferences and needs of patients. [ABSTRACT FROM AUTHOR]

Introduction: Place of death is considered a quality indicator of end-of-life care and enabling people to die were they choose is an important aspiration of palliative care. This study aims to examine the association between involvement of palliative care services and place of death. Methods: Data about patient characteristics, use of general health care, and involvement of palliative care services in nonsudden or expected deaths in all health care settings in 2005-2006 ( N = 1690) were collected by a surveillance network of general practitioners (GPs) in Belgium. Bivariate and multivariate associations between involvement of palliative care services and dying at home, in hospital, in a care home, or in a palliative care unit were examined using χ2 tests and Wald tests. Results: Palliative care services were involved in 21.8% of deaths of those living at home, in 29.1% of those living in care homes, and in 12.4% of deaths in hospital. People were more likely to die in their usual residence rather than in hospital if multidisciplinary palliative home care teams (odds ratio [OR]: 8.4, confidence interval [CI]: 4.7-15.1) or the palliative care reference persons of their care home (OR: 9.4, CI: 3.3-26.7) were involved. Involvement of multidisciplinary palliative support teams in hospitals was associated with lower chances of dying at home (OR: 0.3, CI: 0.1-0.9). High involvement of GPs was not directly associated with out-of-hospital death. Discussion: Involving multidisciplinary palliative home care teams and palliative care reference persons in care homes could support people in dying out-of-hospital. Health care policy-makers should consider strategies to improve involvement of palliative care services in all health care settings. [ABSTRACT FROM AUTHOR]

The aging of the European population will lead to a rapid increase in dementia cases in the coming decades, posing challenges for the organization and provision of end-of-life care. Studying the place of death of patients with dementia, and what determines it, is relevant in this context. Using death certificates, the deaths of people aged 65 and older whose underlying cause of death was a dementia-related disease was studied in Belgium, the Netherlands, England, Scotland, and Wales. Between 50% (Wales) and 92% (Netherlands) of patients with dementia died in a nursing home and between 3% (Netherlands) and 46% (Wales) in hospital. Home death was rare (3–5%) except in Belgium (11%). Multivariate analysis showed that place of death was related to age, sex, available hospital and nursing home beds, and country of residence. Although availability of hospital and nursing home beds partially explained the variation between countries, considerable variation remained even after controlling for that, plus age, sex, and social support. Place of death from dementia differed significantly between the countries studied. In all countries, a majority of patients with dementia died in a long-term care facility. The provision of appropriate long-term care facilities with appropriate staffing could be the primary policy instrument that could help patients with dementia avoid dying in the hospital and ensure quality of end-of-life care in Europe. [ABSTRACT FROM AUTHOR]