{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T18:01:25Z","timestamp":1777917685449,"version":"3.51.4"},"reference-count":23,"publisher":"SAGE Publications","issue":"5","license":[{"start":{"date-parts":[[2013,2,20]],"date-time":"2013-02-20T00:00:00Z","timestamp":1361318400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"published-print":{"date-parts":[[2013,5]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim:<\/jats:title>\n                    <jats:p>To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design:<\/jats:title>\n                    <jats:p>A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93\u20132.77), (odds ratio = 1.33\u20131.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14\u20131.41), (odds ratio = 1.30, 95% confidence interval = 1.20\u20131.42)); younger-middle age ((30\u201359 years: odds ratio = 1.24\u20131.40), (50\u201359 years: odds ratio = 1.23, 95% confidence interval = 1.04\u20131.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49\u20131.58), (odds ratio = 1.35\u20131.53)). Those with increased financial hardship (odds ratio = 0.64\u20130.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60\u20130.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54\u20130.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18\u20131.53).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/0269216312471883","type":"journal-article","created":{"date-parts":[[2013,2,21]],"date-time":"2013-02-21T02:37:52Z","timestamp":1361414272000},"page":"418-427","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":41,"title":["To be involved or not to be involved: A survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe"],"prefix":"10.1177","volume":"27","author":[{"given":"Barbara A","family":"Daveson","sequence":"first","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"given":"Claudia","family":"Bausewein","sequence":"additional","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"given":"Fliss EM","family":"Murtagh","sequence":"additional","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"given":"Natalia","family":"Calanzani","sequence":"additional","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"given":"Irene J","family":"Higginson","sequence":"additional","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"given":"Richard","family":"Harding","sequence":"additional","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"given":"Joachim","family":"Cohen","sequence":"additional","affiliation":[{"name":"Ghent University, Ghent, Belgium; Vrije Universiteit Brussel, Brussels, Belgium"}]},{"given":"Steffen T","family":"Simon","sequence":"additional","affiliation":[{"name":"University Hospital Cologne, Cologne, Germany"}]},{"given":"Luc","family":"Deliens","sequence":"additional","affiliation":[{"name":"End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Brussels, Belgium; Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Palliative Care Center of Expertise, VU University Medical Centre, Amsterdam, the Netherlands"}]},{"given":"Dorothee","family":"Bechinger-English","sequence":"additional","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"given":"Sue","family":"Hall","sequence":"additional","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"given":"Jonathan","family":"Koffman","sequence":"additional","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"given":"Pedro Lopes","family":"Ferreira","sequence":"additional","affiliation":[{"name":"University of Coimbra, Coimbra, Portugal"}]},{"given":"Franco","family":"Toscani","sequence":"additional","affiliation":[{"name":"Lino Maestroni Foundation Palliative Medicine Research Institute, Cremona, Italy"}]},{"given":"Marjolein","family":"Gysels","sequence":"additional","affiliation":[{"name":"Universitat de Barcelona, Barcelona, Spain"}]},{"given":"Lucas","family":"Ceulemans","sequence":"additional","affiliation":[{"name":"University of Antwerp, Brussels, Belgium"}]},{"given":"Dagny F","family":"Haugen","sequence":"additional","affiliation":[{"name":"Norwegian University of Science and Technology, Trondheim, Norway"}]},{"given":"Barbara","family":"Gomes","sequence":"additional","affiliation":[{"name":"King\u2019s College London; Cicely Saunders Institute; Department of Palliative Care, Policy and Rehabilitation, London, UK"}]},{"name":"on behalf of PRISMA","sequence":"additional","affiliation":[]}],"member":"179","published-online":{"date-parts":[[2013,2,20]]},"reference":[{"key":"bibr1-0269216312471883","doi-asserted-by":"publisher","DOI":"10.1258\/ce.2010.010002"},{"key":"bibr2-0269216312471883","doi-asserted-by":"crossref","first-page":"205","DOI":"10.1163\/157180910X12665776638867","volume":"17","author":"Council of Europe","year":"2010","journal-title":"Eur J Health Law"},{"key":"bibr3-0269216312471883","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2005.08.010"},{"key":"bibr4-0269216312471883","doi-asserted-by":"publisher","DOI":"10.1136\/jme.2010.036376"},{"key":"bibr5-0269216312471883","unstructured":"Mental Capacity Act 2005:2005. 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