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Supplementary Material for Place of death for people with HIV: a population-level comparison of eleven countries across three continents using death certificate data. About different data sources and the levels of linkage of data. Table S2. Descriptive data on HIV prevalence and ART coverage for each country, drawn from UNAIDS Global Report 2008. Description of HIV prevalence and ART coverage for each participating country. (DOCX 28Â kb)

Supplemental material, 772263_supp_mat_Questionnaire_general_version_(English) for Palliative care volunteerism across the healthcare system: A survey study by Steven Vanderstichelen, Dirk Houttekier, Joachim Cohen, Yanna Van Wesemael, Luc Deliens and Kenneth Chambaere in Palliative Medicine

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 ost-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.Keywords: Advance care planning, Oncology, Quality of life, Medical decision-making

Complete list of variables in the linked dataset (IMA â Statistics Belgium â BCR). (DOCX 22Â kb)

Introduction: Although many terminally ill people are admitted to an intensive care unit (ICU) at the end of life, their care is often inadequate because of poor communication by physicians and lack of patient- and family-centred care. The aim of this systematic literature review was to describe physician-related barriers to adequate communication within the team and with patients and families, as well as barriers to patient- and family-centred decision-making, towards the end of life in the ICU. We base our discussion and evaluation on the quality indicators for end-of-life care in the ICU developed by the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup. Method: Four electronic databases (MEDLINE, Embase, CINAHL and PsycINFO) were searched, using controlled vocabulary and free text words, for potentially relevant records published between 2003 and 2013 in English or Dutch. Studies were included if the authors reported on physician-related and physician-reported barriers to adequate communication and decision-making. Barriers were categorized as being related to physicians' knowledge, physicians' attitudes or physicians' practice. Study quality was assessed using design-specific tools. Evidence for barriers was graded according to the quantity and quality of studies in which the barriers were reported. Results: Of 2,191 potentially relevant records, 36 studies were withheld for data synthesis. We determined 90 barriers, of which 46 were related to physicians' attitudes, 24 to physicians' knowledge and 20 to physicians' practice. Stronger evidence was found for physicians' lack of communication training and skills, their attitudes towards death in the ICU, their focus on clinical parameters and their lack of confidence in their own judgment of their patient's true condition. Conclusions: We conclude that many physician-related barriers hinder adequate communication and shared decision-making in ICUs. Better physician education and palliative care guidelines are needed to enhance knowledge, attitudes and practice regarding end-of-life care. Patient-, family- and health care system-related barriers need to be examined.

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.

Aims: A majority of patients dying from chronic life-limiting diseases prefer to die at home, yet many still die in hospital. Comparing place of death cross-nationally can indicate margins for improvement and policy suggestions. We aimed to compare the place of death of people who could have benefitted from palliative care in nine European and five non-European countries, and examine to what extent country-variation in place of death is related to socio-demographic, clinical and healthcare factors. Methods: Death certificate data for all 2008 deaths in Belgium, England, Wales, France, Italy, Mexico, Netherlands, New Zealand, Canada, Czech Republic, Hungary, South Korea, USA and Spain (Andalusia) with an underlying cause of death corresponding to the minimal palliative care subset (Rosenwax et al. 2005) linked with regional healthcare statistics (N=2,220,997). Descriptive statistics and multivariable logistic regression analyses were used. Results: People who could have benefited from palliative caredied at home in 13% (Canada) to 51% (Mexico) of cases, in hospital in 25% (Netherlands) to 85% (South Korea) of cases, and in nursing home in 1% (South Korea) to 35% (Netherlands) of cases. The large differences across countries in the proportion of people dying at home and elsewhere were only partly explained by differences in age, sex, marital status, cause of death, and the availability of hospital beds, long-term care beds and general practitioners. Conclusion: Country differences in place of death in a palliative care eligible population are only partly explained by differences in healthcare provision and socio-demographic and clinical differences and are thus likely attributable to different palliative and end-of-life care policies, strategies and practices. Our findings facilitate a further identification of policies and practices that can enable people to die in their place of choice within particular cultural, political and economic contexts.

Seeking to establish a linkage between bereavement and the "good" or "bad" deaths: qualitative findings

Place of death in people with Parkinson's disease

Physician-related barriers to adequate communication and shared decision-making in ICU.

Background Most people prefer not to die in a hospital and in those with palliative care needs hospital as last place of care and death 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, social and environmental characteristics associated with hospital death in Belgium in 2008. Results Of all people eligible for palliative care (N = 44 229; ie 43.5% of all deaths) 51% died in hospital, 25% at home and 24% in LTC settings (long-term care settings). Of those living at home at the time of death hospital death occurred in more than 60%; of those living in LTC settings this was 16%. Nine per cent of those officially living at home alone at the time of death died in LTC settings; of those living with others this was five per cent. Both in those living at home and in those living in LTC settings, hospital death was more likely in areas with higher availability of acute hospital beds and less likely in areas with higher availability of skilled nursing home beds in LTC settings. Conclusions Hospital death is still common among those eligible for palliative care. The significant fraction of people living at home and dying in LTC settings indicates the need for additional inpatient beds for terminal care in palliative care institutions.

Introduction For people with dementia dying from pneumonia, hospitalisation at the end of life may be of little benefit and result in unfavourable outcomes such as hospital death. 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=101685) 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 (LTC) settings was linked through the ZIP-code of the place of residence. Results Of people with dementia dying from pneumonia (N=1420), 47.2% died in hospital. Of those living in LTC settings, 25.6% died in hospital. For people living in their own home, hospital death was more likely for those who were single (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 LTC settings, hospital death was more likely in regions with higher availability of residential beds (without continuous skilled nursing) in LTC 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 LTC settings died in a hospital. These results suggest shortcomings in the Belgian healthcare system in preventing potentially avoidable terminal hospitalizations in a vulnerable population.

Introduction: Research indicates that end-of-life care in hospitals is not always optimal. Recognition of impending death by hospital physicians is a prerequisite for communication with patients and relatives about dying in hospital and providing care adequately addressing patients' needs at the end of life. We examined if hospital physicians recognized the impending death of their dying patients and if that recognition was related with more appropriate communication and care at the end of life, and with quality of dying. Methods: Post-mortem survey of hospital physicians about care in the final three days of patients who died at one of the 18 participating wards in a Dutch university hospital, between June 2009 and March 2011. Non parametric tests (e.g. ?², Mann-Whitney, ANOVA) were performed to analyse data. Results: In 79% of cases (N=228), the nearness of death was completely or partially recognized by physicians, at least six hours in advance. In 69% of recognized cases, it was recognized three days or less before death. If recognized, discussing death with patients and relatives was more likely. Change of treatment goal into comfort care or abstention and prescription of opioids were more likely if impending death was recognized. The presence of the physician at the time of death was less likely if it was recognized. According to the physician, the quality of death was better if it had been recognized in advance. Discussion: In four fifths of deaths, the impending death of their dying patients was recognized by hospital physicians of a Dutch teaching hospital. Recognition was related with more appropriate communication and care at the end of life.

Appropriateness of hospital admissions at the end of life: perspectives of GPs and nurses. Aim: With many patients being transferred to hospital in the last days of life, we wanted to explore the perspectives of general practitioners (GPs) and nurses on hospitalizations at the end of life and how they consider the appropriateness of such hospitalizations. Methods: Five focus groups with GPs (N=37) and three with nurses working in hospital, home care or care homes (N=23). Participants were asked about their experiences and opinions about hospitalizations at the end of life. They were prompted to assess the appropriateness and avoidability of such a hospitalization in patients with cancer, organ failure or dementia. Transcripts of the focus groups discussions were analyzed by two researchers using open, axial and selective coding with QSR-NVIVO 10. Results were regularly discussed in the research team. Results: The participants of this study generally agree that a hospitalization at the end of life is clinically appropriate in a limited number of events and conditions (eg. gastro-intestinal obstruction), and only when it is likely that there will be a comfort benefit, that can only be achieved by a diagnosis or treatment in a hospital. On the other hand there was also agreement that a hospitalization at the end of life is appropriate when it has a psychosocial benefit, in keeping with the patient's and/or relatives' preferences (eg. to take away anxiety) or when the current care setting is not able to provide adequate care continuously and adequate alternative care settings are not readily available. Conclusion: GPs and nurses agree that a large proportion of hospitalizations at the end of life can be avoided although they may be appropriate taking into account the psychosocial benefits and the lack of adequate sub-acute alternatives. These findings will be used to develop an assessment procedure to evaluate whether a hospitalization at the end of life is appropriate or necessary. Funding: This study is part of the FLIECE-study, funded by IWT.

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.