title: Preferences of patients with advanced lung cancer regarding the involvement of family and others in medical decision-making.
abstract: OBJECTIVE
  To explore the preferences of competent patients with advanced lung cancer regarding involvement of family and/or others in their medical decision-making, and their future preferences in case of loss of competence.
  
  
  METHODS
  Over 1 year, physicians in 13 hospitals in Flanders, Belgium, recruited patients with initial non-small–cell lung cancer, stage IIIb or IV. The patients were interviewed with a structured questionnaire every 2 months until the fourth interview and every 4 months until the sixth interview.
  
  
  RESULTS
  At inclusion, 128 patients were interviewed at least once; 13 were interviewed 6 consecutive times. Sixty-nine percent of patients wanted family members to be involved in medical decision-making and this percentage did not change significantly over time. One third of these patients did not achieve this preference. Ninety-four percent of patients wanted family involvement if they lost competence, 23% of these preferring primary physician control over decision-making, 41% shared physician and family control, and 36% primary family control. This degree of preferred family involvement expressed when competent did not change significantly over time at population level, but did at individual level; almost half the patients changed their minds either way at some point during the observation period.
  
  
  CONCLUSIONS
  The majority of patients with lung cancer wanted family involvement in decision-making, and almost all did so in case of future loss of competence. However, as half of the patients changed their minds over time about the degree of family involvement they wanted if they lost competence, physicians should regularly rediscuss a patient's preferences.
authors.affiliation: End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium. koen.pardon@vub.ac.be
authors.forename: Koen
authors.initials: K
authors.lastname: Pardon
authors.forename: Reginald
authors.initials: R
authors.lastname: Deschepper
authors.forename: Robert Vander
authors.initials: RV
authors.lastname: Stichele
authors.forename: Jan L
authors.initials: JL
authors.lastname: Bernheim
authors.forename: Freddy
authors.initials: F
authors.lastname: Mortier
authors.forename: Nathalie
authors.initials: N
authors.lastname: Bossuyt
authors.forename: Denis
authors.initials: D
authors.lastname: Schallier
authors.forename: Paul
authors.initials: P
authors.lastname: Germonpré
authors.forename: Daniella
authors.initials: D
authors.lastname: Galdermans
authors.forename: Willem
authors.initials: W
authors.lastname: Van Kerckhoven
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
mesh_terms: D000368:Aged; D001294:Attitude to Health; D002289:Carcinoma, Non-Small-Cell Lung / Q000523:psychology* / Q000628:therapy*; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008175:Lung Neoplasms / Q000523:psychology* / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010358:Patient Participation; D057240:Patient Preference; D011788:Quality of Life; D018709:Statistics, Nonparametric; D011795:Surveys and Questionnaires