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 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
Author
Faculty/Department
Faculty of Medicine and Health Sciences
Publication type
article
Publication
London ,
Subject
Human medicine
Source (journal)
Palliative medicine. - London
Volume/pages
27(2013) :5 , p. 418-427
ISSN
0269-2163
ISI
000318466800005
Carrier
E
Target language
English (eng)
Full text (Publishers DOI)
Affiliation
University of Antwerp
Abstract
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 = 1.111-1.41), (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.
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