title: Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients.
abstract: OBJECTIVE
  The objective is to explore changes over time in the information and participation preferences of newly diagnosed stage IIIb/IV non-small-cell lung cancer patients.
  
  
  METHODS
  Patients were recruited by physicians in 13 hospitals and interviewed every 2 months until the fourth and every 4 months until the sixth interview.
  
  
  RESULTS
  Sixty-seven patients were interviewed three times. Over a period of 4 months from diagnosis, half of patients changed their information preferences for palliative care and end-of-life decisions with a possible or certain life-shortening effect (ELDs, e.g., non-treatment decisions) in both directions, from not wanting to wanting the information, but also--and as much--from wanting to no longer wanting it. The latter were more likely to be in a better physical condition. Preferences for participation in medical decision making also changed: 50% to 78%, depending on the type of decision (general, treatment, transfer or ELD), changed their preference towards wanting more or less participation. Pain seemed to be a trigger for patients wanting more involvement, which contrasts with studies suggesting that patients who are more ill tend to give up more control.
  
  
  CONCLUSIONS
  Doctors should regularly ask their advanced lung cancer patients how much information and participation they want because preferences do change in unexpected ways.
authors.affiliation: End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium. koen.pardon@vub.ac.be
authors.forename: Koen
authors.initials: K
authors.lastname: Pardon
authors.forename: R
authors.initials: R
authors.lastname: Deschepper
authors.forename: R
authors.initials: R
authors.lastname: Vander Stichele
authors.forename: J L
authors.initials: JL
authors.lastname: Bernheim
authors.forename: F
authors.initials: F
authors.lastname: Mortier
authors.forename: N
authors.initials: N
authors.lastname: Bossuyt
authors.forename: D
authors.initials: D
authors.lastname: Schallier
authors.forename: P
authors.initials: P
authors.lastname: Germonpré
authors.forename: D
authors.initials: D
authors.lastname: Galdermans
authors.forename: W
authors.initials: W
authors.lastname: Van Kerckhoven
authors.forename: L
authors.initials: L
authors.lastname: Deliens
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002289:Carcinoma, Non-Small-Cell Lung / Q000175:diagnosis / Q000473:pathology / Q000523:psychology*; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008175:Lung Neoplasms / Q000175:diagnosis / Q000473:pathology / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D057240:Patient Preference; D036301:Qualitative Research; D011788:Quality of Life; D019452:Terminally Ill