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BACKGROUND AND OBJECTIVES: The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention has been designed to inform family carers about end-of-life care options available to a person living with advanced dementia. The objectives of the mySupport study were to adapt the application of the intervention for use in different countries, assess impact on family satisfaction and decision-making, and identify costs and supportive conditions for the implementation of the intervention. RESEARCH DESIGN AND METHODS: A multiple-case study design was chosen where the nursing home was the case. Nursing homes were enrolled from six countries: Canada, Czech Republic, Italy, Netherlands, Republic of Ireland, and United Kingdom. RESULTS: Seventeen cases (nursing homes) participated, with a total of 296 interviews completed including family carers, nursing home staff, and health providers. Five themes relevant to the implementation of the intervention were identified: supportive relationships; committed staff; perceived value of the intervention; the influence of external factors on the nursing home; and resource impact of delivery. DISCUSSION AND IMPLICATIONS: There is a commonality of facilitators and barriers across countries when introducing practice innovation. A key learning point was the importance of implementation being accompanied by committed and supported nursing home leadership. The nursing home context is dynamic and multiple factors influence implementation at different points of time.

Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative’s future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers’ uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents’ hospitalisations and documented advance decisions. Design a pretest–posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers’ scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents’ hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (−9.6, 95% confidence interval: −13.3, −6.0, P Conclusions the mySupport intervention may be impactful in countries beyond the original setting.

Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative’s future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers’ uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents’ hospitalisations and documented advance decisions. Design a pretest–posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers’ scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents’ hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (−9.6, 95% confidence interval: −13.3, −6.0, P Conclusions the mySupport intervention may be impactful in countries beyond the original setting.

Objective We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions about their relative’s end-of-life care. Methods We used nominal group methods to create country-specific QPLs. Family caregivers read an information booklet about end-of-life care for people with dementia, and generated questions to ask healthcare professionals. They also selected questions from a shortlist. We analyzed and compared the QPLs using content analysis. Results Four to 20 family caregivers per country were involved. QPLs ranged from 15 to 24 questions. A quarter (24%) of the questions appeared in more than one country’s QPL. One question was included in all QPLs: “Can you tell me more about palliative care in dementia?”. Conclusion Family caregivers have many questions about dementia palliative care, but the local context may influence which questions specifically. Local end-user input is thus important to customize QPLs. Practice implications Prompts for family caregivers should attend to the unique information preferences among different countries. Further research is needed to evaluate the QPLs’ use.

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 (18years) 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.

Oncologists have a central role as ‘gate keepers’ in terms of referring patients to palliative and hospice care. This role is even more important in countries such as the Czech Republic and Slovakia, where palliative care is still developing. The aim of this study was to assess the associations between self-reported knowledge, attitudes, and behaviour of Czech and Slovak oncologists towards hospice care and their attendance of palliative care training. Methods: The method was an anonymous online questionnaire created by the LimeSurvey software. All members of national Oncological Society in the Czech Republic and Slovakia were invited to participate. Eighty-four oncologists completed the survey. Results: Czech and Slovak oncologists’ attendance of palliative care training is significantly associated with their attitudes and behaviour towards hospice care. Respondents who had any additional palliative care training felt more knowledgeable and were more likely to discuss hospice care with their patients and families than oncologists without such training. Additionally, they also found delivering bad news less difficult and referred more terminal patients to hospice care than those with no training. Conclusion: Training in palliative care can influence how oncologists discuss hospice care and refer their patients to such care. This should be reflected in curricula for medical students and in postgraduate education for oncologists and other health care providers, especially in countries with less integrated palliative care such as the Czech Republic or Slovakia.

Oncologists have a central role as ‘gate keepers’ in terms of referring patients to palliative and hospice care. This role is even more important in countries such as the Czech Republic and Slovakia, where palliative care is still developing. The aim of this study was to assess the associations between self-reported knowledge, attitudes, and behaviour of Czech and Slovak oncologists towards hospice care and their attendance of palliative care training. Methods: The method was an anonymous online questionnaire created by the LimeSurvey software. All members of national Oncological Society in the Czech Republic and Slovakia were invited to participate. Eighty-four oncologists completed the survey. Results: Czech and Slovak oncologists’ attendance of palliative care training is significantly associated with their attitudes and behaviour towards hospice care. Respondents who had any additional palliative care training felt more knowledgeable and were more likely to discuss hospice care with their patients and families than oncologists without such training. Additionally, they also found delivering bad news less difficult and referred more terminal patients to hospice care than those with no training. Conclusion: Training in palliative care can influence how oncologists discuss hospice care and refer their patients to such care. This should be reflected in curricula for medical students and in postgraduate education for oncologists and other health care providers, especially in countries with less integrated palliative care such as the Czech Republic or Slovakia.

Introduction: Dying in the preferred place of death is considered to be one of indicators of quality of end-of-life care. Research into health care professionals’ knowledge of patients’ preferences for place of death is therefore important. The aim of this study was to assess the difference between health care professionals and the general public in their views on where do people not want to die. Methods: Secondary analysis of data from a representative survey of the general population and a convenience sample of health care professionals in the Czech Republic. Respondents from the general population were asked where they would not like to die and health care professionals were asked where they think the general population does not want to die. Sample consisted of 1095 respondents from the general population and 1006 health care professionals. Health care professionals were physicians (73.3%) and nurses (26.6%). Results: Long-term care facilities and hospitals were identified as the most undesirable settings for place of death. A significant difference in views on hospices was identified: 6% of health professionals compared to 42.2% of the general population (P < 0.001) indicated a preference for people to not die in hospice. Discussion: The most unwanted settings for place of death were places where most people die. More research is needed to understand the factors influencing preferences and should feed into policy making. Better promotion of hospice care should be developed to communicate to the general public the differences between hospices and other institutions.

CONTEXT: A number of research projects have been conducted that aim to gather data on the international development of palliative care. These data are important for policy makers and palliative care advocates. OBJECTIVES: The aim of this article was to provide a critical comparative analysis of methodological approaches used to assess the development and status of palliative care services and infrastructure at an international level. METHODS: A selective literature review that focused on the methodological features of eight identified reports was undertaken. RESULTS: Reviewed reports were found to differ in adopted methodologies and provided uneven amounts of methodological information. Five major methodological limitations were identified (lack of theory, use of experts as source of information, grey literature, difficulties in ranking, and the problematic nature of data on service provision). A set of recommendations on how to deal with these issues in future research is provided. CONCLUSION: Measuring the international development of palliative care is a difficult and challenging task. The results of this study could be used to improve the validity of future research in this field.

Place of death represents an important indicator for end-of-life care policy making and is related to the quality of life of patients and their families. The aim of the paper is to analyse the place of death in the Czech Republic and Slovakia in 2011. Research questions were focused on factors influencing the place of death and specifically the likelihood of dying at home.

Introduction: Dying in the preferred place of death is considered to be one of indicators of quality of end-of-life care. Research into health care professionals’ knowledge of patients’ preferences for place of death is therefore important. The aim of this study was to assess the difference between health care professionals and the general public in their views on where do people not want to die. Methods: Secondary analysis of data from a representative survey of the general population and a convenience sample of health care professionals in the Czech Republic. Respondents from the general population were asked where they would not like to die and health care professionals were asked where they think the general population does not want to die. Sample consisted of 1095 respondents from the general population and 1006 health care professionals. Health care professionals were physicians (73.3%) and nurses (26.6%). Results: Long-term care facilities and hospitals were identified as the most undesirable settings for place of death. A significant difference in views on hospices was identified: 6% of health professionals compared to 42.2% of the general population (P < 0.001) indicated a preference for people to not die in hospice. Discussion: The most unwanted settings for place of death were places where most people die. More research is needed to understand the factors influencing preferences and should feed into policy making. Better promotion of hospice care should be developed to communicate to the general public the differences between hospices and other institutions.

Place of death represents an important indicator for end-of-life care policy making and is related to the quality of life of patients and their families. The aim of the paper is to analyse the place of death in the Czech Republic and Slovakia in 2011. Research questions were focused on factors influencing the place of death and specifically the likelihood of dying at home.