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

B.A. Daveson, C. Bausewein, F.E.M. Murtagh, N. Calanzani, I.J. Higginson, Richard Harding, J. Cohen, S.T. Simon, L. Deliens, D. Bechinger-English, S. Hall, J. Koffman, P.L. Ferreira, F. Toscani, M. Gysels, L. Ceulemans, D.F. Haugen, B. Gomes

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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.
To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors.
A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain.
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 = 1.93–2.77), (odds ratio = 1.33–1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14–1.41), (odds ratio = 1.30, 95% confidence interval = 1.20–1.42)); younger-middle age ((30–59 years: odds ratio = 1.24–1.40), (50–59 years: odds ratio = 1.23, 95% confidence interval = 1.04–1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49–1.58), (odds ratio = 1.35–1.53)). Those with increased financial hardship (odds ratio = 0.64–0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60–0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54–0.99) 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 = 1.18–1.53).
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.
Original languageEnglish
Pages (from-to)418-427
JournalPalliative Medicine
Issue number5
Early online date20 Feb 2013
Publication statusPublished - 1 May 2013

Bibliographical note

We are most grateful to all the survey participants. We thank the BMG Research and ZEM University of Bonn for assistance in survey administration and data collection; Gao Wei, Joana Cadima, Vicky Simms and Christina Ramsenthaler for statistical advice and assistance and Suzanne Shale and Catherine Evans for their helpful comments on an earlier draft of the article. Mel Rumble assisted with proofing the article. We also thank our colleagues from PRISMA including the scientific committee who contributed to the discussions and scientific review of the survey, namely Stein Kaasa, Natalie Evans, Hamid Benalia, Ana Barros Pinto, Noël Derycke, Martine De Vlieger, Let Dillen, Michael Echteld, Nancy Gikaara, Johan Menten, Bregje Onwuteaka-Philipsen, Robert Pool, Richard A Powell, Miel Ribbe, Katrin Sigurdardottir, Bart Van den Eynden, Paul Vanden Berghe and Trudie Van Iersel. We thank Susana Bento, Carolina Comabella, Filomena Ferreira, Grethe Iversen, Carmen López-Dóriga, Constanze Rémi, Christian Schulz and Wessex Translations for their work translating and back-translating the questionnaires. The invaluable work of Ron Irwin, Sian Best and Mike Gover at King’s College London is also highly appreciated. PRISMA aims to provide evidence and guidance on best practice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aimed to reflect the preferences and cultural diversities of citizens and the clinical priorities of clinicians, and appropriately measure multidimensional outcomes across settings where end-of-life care is delivered. Principal Investigator: Richard Harding. Scientific Director: Irene J Higginson. PRISMA members: Gwenda Albers, Barbara Antunes, Ana Barros Pinto, Claudia Bausewein, Dorothee Bechinger-English, Hamid Benalia, Emma Bennett, Lucy Bradley, Lucas Ceulemans, Barbara A Daveson, Luc Deliens, Noël Derycke, Martine De Vlieger, Let Dillen, Julia Downing, Michael Echteld, Natalie Evans, Dagny Faksvåg Haugen, Silvia Finetti, Nancy Gikaara, Barbara Gomes, Marjolein Gysels, Sue Hall, Richard Harding, Irene J Higginson, Stein Kaasa, Jonathan Koffman, Pedro Lopes Ferreira, Arantza Menaca, Johan Menten, Natalia Monteiro Calanzani, Fliss Murtagh, Bregje Onwuteaka-Philipsen, Roeline Pasman, Francesca Pettenati, Robert Pool, Richard A. Powell, Miel Ribbe, Katrin Sigurdardottir, Steffen Simon, Franco Toscani, Bart Van den Eynden, Paul Vanden Berghe and Trudie Van Iersel.
Conflict of interest
We declare that we have no conflict of interest. The funder had no role in preparation of this article or the study design.
All authors have completed the International Committee of Medical Journal Editors (ICMJE) uniform disclosure form at Financial support for the submitted study has been detailed in the aforementioned funding statement.
This PRISMA study was funded by the European Commission’s Seventh Framework Programme (contract number: Health-F2- 2008-201655). PRISMA’s overall aim was to co-ordinate high-quality international research into end-of-life cancer care. Additionally, Claudia Bausewein has received grants and funds for employment from King’s College London and payments for lectures from Respiratory Hospital Berlin, Germany; Christophorus Academy, Munich, Germany and Ärztekammer Hamburg, Hamburg, Germany; Marjolein Gysels has received funds for employment from Fundacio Clinic per a la Recerca Biomedica; and Pedro Ferreira has received funds for employment from the Faculty of Economics, University of Coimbra, Portugal. At the time of writing this manuscript, Barbara Daveson was funded by project BuildCARE.


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