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      Quality of dying and quality of end-of-life care of nursing home residents in six countries: An epidemiological study

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          Abstract

          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.

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          Most cited references31

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          Assessment of nursing home residents in Europe: the Services and Health for Elderly in Long TERm care (SHELTER) study

          Background Aims of the present study are the following: 1. to describe the rationale and methodology of the Services and Health for Elderly in Long TERm care (SHELTER) study, a project funded by the European Union, aimed at implementing the interRAI instrument for Long Term Care Facilities (interRAI LTCF) as a tool to assess and gather uniform information about nursing home (NH) residents across different health systems in European countries; 2. to present the results about the test-retest and inter-rater reliability of the interRAI LTCF instrument translated into the languages of participating countries; 3 to illustrate the characteristics of NH residents at study entry. Methods A 12 months prospective cohort study was conducted in 57 NH in 7 EU countries (Czech Republic, England, Finland, France, Germany, Italy, The Netherlands) and 1 non EU country (Israel). Weighted kappa coefficients were used to evaluate the reliability of interRAI LTCF items. Results Mean age of 4156 residents entering the study was 83.4 ± 9.4 years, 73% were female. ADL disability and cognitive impairment was observed in 81.3% and 68.0% of residents, respectively. Clinical complexity of residents was confirmed by a high prevalence of behavioral symptoms (27.5% of residents), falls (18.6%), pressure ulcers (10.4%), pain (36.0%) and urinary incontinence (73.5%). Overall, 197 of the 198 the items tested met or exceeded standard cut-offs for acceptable test-retest and inter-rater reliability after translation into the target languages. Conclusion The interRAI LTCF appears to be a reliable instrument. It enables the creation of databases that can be used to govern the provision of long-term care across different health systems in Europe, to answer relevant research and policy questions and to compare characteristics of NH residents across countries, languages and cultures.
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            What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death

            Background: Population ageing represents a global challenge for future end-of-life care. Given new trends in place of death, it is vital to examine where the rising number of deaths will occur in future years and implications for health and social care. Aim: To project where people will die from 2015 to 2040 across all care settings in England and Wales. Design: Population-based trend analysis and projections using simple linear modelling. Age- and gender-specific proportions of deaths in hospital, care home, home, hospice and ‘other’ were applied to numbers of expected future deaths. Setting/population: All deaths (2004–2014) from death registration data and predicted deaths (2015–2040) from official population forecasts in England and Wales. Results: Annual deaths are projected to increase from 501,424 in 2014 (38.8% aged 85 years and over) to 635,814 in 2040 (53.6% aged 85 years and over). Between 2004 and 2014, proportions of home and care home deaths increased (18.3%–22.9% and 16.7%– 21.2%) while hospital deaths declined (57.9%–48.1%). If current trends continue, numbers of deaths in care homes and homes will increase by 108.1% and 88.6%, with care home the most common place of death by 2040. If care home capacity does not expand and additional deaths occur in hospital, hospital deaths will start rising by 2023. Conclusion: To sustain current trends, end-of-life care provision in care homes and the community needs to double by 2040. An infrastructure across care settings that supports rising annual deaths is urgently needed; otherwise, hospital deaths will increase.
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              Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries

              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.
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                Author and article information

                Journal
                Palliat Med
                Palliat Med
                PMJ
                sppmj
                Palliative Medicine
                SAGE Publications (Sage UK: London, England )
                0269-2163
                1477-030X
                01 October 2018
                December 2018
                : 32
                : 10
                : 1584-1595
                Affiliations
                [1 ]End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels and Ghent, Belgium
                [2 ]Department of Geriatric Medicine, Ghent University Hospital, Ghent, Belgium
                [3 ]EMGO+ Institute for Health and Care Research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands
                [4 ]Radboud University Medical Center, Department of Anesthesiology, Pain and Palliative Medicine, Nijmegen, The Netherlands
                [5 ]Unit for Research on Aging Society, Department of Sociology, Chair of Epidemiology and Preventive Medicine, Faculty of Medicine, Jagiellonian University Medical College, Cracow, Poland
                [6 ]National Institute for Health and Welfare, Helsinki, Finland
                [7 ]International Observatory on End-of-Life Care, Lancaster University, Lancaster, UK
                [8 ]Università Cattolica del Sacro Cuore, Rome, Italy
                [9 ]Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
                Author notes
                [*]Lara Pivodic, Department of Family Medicine and Chronic Care, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB), Laarbeeklaan 103, Brussels 1090, Belgium. Email: lara.pivodic@ 123456vub.be
                Author information
                https://orcid.org/0000-0003-1439-316X
                Article
                10.1177_0269216318800610
                10.1177/0269216318800610
                6238165
                30273519
                4cefc8c8-500b-43f3-994f-d41b863bd411
                © The Author(s) 2018

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Funding
                Funded by: AXA Research Fund, FundRef https://doi.org/10.13039/501100001961;
                Award ID: n/a
                Funded by: FP7 Health, FundRef https://doi.org/10.13039/100011272;
                Award ID: 603111
                Funded by: Postdoctoral Fellowship of the Research Foundation - Flanders, ;
                Categories
                Original Articles

                Anesthesiology & Pain management
                nursing home,terminal care,palliative care,quality of health care,epidemiologic research design

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