title: Preferred and actual involvement of advanced lung cancer patients and their families in end-of-life decision making: a multicenter study in 13 hospitals in Flanders, Belgium.
abstract: BACKGROUND
  Death is often preceded by medical decisions that potentially shorten life (end-of-life decisions [ELDs]), for example, the decision to withhold or withdraw treatment. Respect for patient autonomy requires physicians to involve their patients in this decision making.
  
  
  OBJECTIVE
  The objective of this study was to examine the involvement of advanced lung cancer patients and their families in ELD making and compare their actual involvement with their previously stated preferences for involvement.
  
  
  METHODS
  Patients with Stage IIIb/IV non-small cell lung cancer were recruited by physicians in 13 hospitals and regularly interviewed between diagnosis and death. When the patient died, the specialist and general practitioner were asked to fill in a questionnaire.
  
  
  RESULTS
  Eighty-five patients who died within 18 months of diagnosis were studied. An ELD was made in 52 cases (61%). According to the treating physician, half of the competent patients were not involved in the ELD making, one-quarter shared the decision with the physician, and one-quarter made the decision themselves. In the incompetent patients, family was involved in half of cases. Half of the competent patients were involved less than they had previously preferred, and 7% were more involved. Almost all of the incompetent patients had previously stated that they wanted their family involved in case of incompetence, but half did not achieve this.
  
  
  CONCLUSIONS
  In half of the cases, advanced lung cancer patients-or their families in cases of incompetence-were not involved in ELD making, despite the wishes of most of them. Physicians should openly discuss ELDs and involvement preferences with their advanced lung cancer patients.
authors: End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium.
authors: Koen
authors: K
authors: Pardon
authors: Reginald
authors: R
authors: Deschepper
authors: Robert
authors: R
authors: Vander Stichele
authors: Jan L
authors: JL
authors: Bernheim
authors: Freddy
authors: F
authors: Mortier
authors: Denis
authors: D
authors: Schallier
authors: Paul
authors: P
authors: Germonpré
authors: Daniella
authors: D
authors: Galdermans
authors: Willem Van
authors: WV
authors: Kerckhoven
authors: Luc
authors: L
authors: Deliens
mesh_terms: D000368:Aged; D001293:Attitude to Death; D001530:Belgium; D002289:Carcinoma, Non-Small-Cell Lung / Q000523:psychology*; D005190:Family; D005260:Female; D006801:Humans; D017567:Karnofsky Performance Status; D008175:Lung Neoplasms / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D010817:Physician-Patient Relations; D016414:Resuscitation Orders; D012959:Socioeconomic Factors; D013727:Terminal Care / Q000523:psychology*