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
Aim: To examine public preferences for self-involvement in end-of-life care decision-making and identify
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).
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.