title: End-of-life decision-making in six European countries: descriptive study.
abstract: BACKGROUND
  Empirical data about end-of-life decision-making practices are scarce. We aimed to investigate frequency and characteristics of end-of-life decision-making practices in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden, and Switzerland.
  
  
  METHODS
  In all participating countries, deaths reported to death registries were stratified for cause (apart from in Switzerland), and samples were drawn from every stratum. Reporting doctors received a mailed questionnaire about the medical decision-making that had preceded the death of the patient. The data-collection procedure precluded identification of any of the doctors or patients. All deaths arose between June, 2001, and February, 2002. We weighted data to correct for stratification and to make results representative for all deaths: results were presented as weighted percentages.
  
  
  RESULTS
  The questionnaire response rate was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. Total number of deaths studied was 20480. Death happened suddenly and unexpectedly in about a third of cases in all countries. The proportion of deaths that were preceded by any end-of-life decision ranged between 23% (Italy) and 51% (Switzerland). Administration of drugs with the explicit intention of hastening death varied between countries: about 1% or less in Denmark, Italy, Sweden, and Switzerland, 1.82% in Belgium, and 3.40% in the Netherlands. Large variations were recorded in the extent to which decisions were discussed with patients, relatives, and other caregivers.
  
  
  CONCLUSIONS
  Medical end-of-life decisions frequently precede dying in all participating countries. Patients and relatives are generally involved in decision-making in countries in which the frequency of making these decisions is high.
authors.affiliation: Erasmus MC, University Medical Center Rotterdam, Department of Public Health, Rotterdam, Netherlands. a.vanderheide@erasmusmc.nl <a.vanderheide@erasmusmc.nl>
authors.forename: Agnes
authors.initials: A
authors.lastname: van der Heide
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.forename: Karin
authors.initials: K
authors.lastname: Faisst
authors.forename: Tore
authors.initials: T
authors.lastname: Nilstun
authors.forename: Michael
authors.initials: M
authors.lastname: Norup
authors.forename: Eugenio
authors.initials: E
authors.lastname: Paci
authors.forename: Gerrit
authors.initials: G
authors.lastname: van der Wal
authors.forename: Paul J
authors.initials: PJ
authors.lastname: van der Maas
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002423:Cause of Death; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D003718:Denmark; D005060:Europe; D005065:Euthanasia / Q000706:statistics & numerical data*; D005260:Female; D006801:Humans; D007223:Infant; D007558:Italy; D008297:Male; D008875:Middle Aged; D010818:Practice Patterns, Physicians'; D016079:Refusal to Treat / Q000706:statistics & numerical data; D012297:Right to Die; D017236:Suicide, Assisted / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D013548:Sweden; D013557:Switzerland; D016312:Treatment Refusal / Q000706:statistics & numerical data