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.
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.
  
  
  OBJECTIVE
  To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors.
  
  
  METHODS
  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.
authors: King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK. barbara.daveson@kcl.ac.uk
authors: Barbara A
authors: BA
authors: Daveson
authors: Claudia
authors: C
authors: Bausewein
authors: Fliss E M
authors: FE
authors: Murtagh
authors: Natalia
authors: N
authors: Calanzani
authors: Irene J
authors: IJ
authors: Higginson
authors: Richard
authors: R
authors: Harding
authors: Joachim
authors: J
authors: Cohen
authors: Steffen T
authors: ST
authors: Simon
authors: Luc
authors: L
authors: Deliens
authors: Dorothee
authors: D
authors: Bechinger-English
authors: Sue
authors: S
authors: Hall
authors: Jonathan
authors: J
authors: Koffman
authors: Pedro Lopes
authors: PL
authors: Ferreira
authors: Franco
authors: F
authors: Toscani
authors: Marjolein
authors: M
authors: Gysels
authors: Lucas
authors: L
authors: Ceulemans
authors: Dagny F
authors: DF
authors: Haugen
authors: Barbara
authors: B
authors: Gomes
mesh_terms: D000328:Adult; D003657:Decision Making; D005060:Europe; D005260:Female; D006801:Humans; D008297:Male; D016743:Mental Competency; D008875:Middle Aged; D016017:Odds Ratio; D010358:Patient Participation; D011639:Public Opinion; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*