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

Barbara A Daveson, Claudia Bausewein, Fliss Em Murtagh, Natalia Calanzani, Irene J Higginson, Richard Harding, Joachim Cohen, Steffen T Simon, Luc Deliens, Dorothee Bechinger-English, Sue Hall, Jonathan Koffman, Pedro Lopes Ferreira, Franco Toscani, Marjolein Gysels, Lucas Ceulemans, Dagny F Haugen, Barbara Gomes, on behalf of PRISMA

Research output: Contribution to journalArticlepeer-review

33 Citations (Scopus)


Background: 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.

Aim: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors.
Design: A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain.

Results: 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).

Conclusions: 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
Article numberN/A
Pages (from-to)418-427
Number of pages10
JournalPalliative Medicine
Issue number5
Early online date20 Feb 2013
Publication statusPublished - May 2013


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