title: Is patient autonomy a critical determinant of quality of life in Korea? End-of-life decision making from the perspective of the patient.
abstract: OBJECTIVE
  We aimed to investigate the current practice of the involvement in decision making from the perspectives of terminal cancer patients, and to explore its possible associations with quality of life and quality of death in Korea.
  
  
  METHODS
  A multi-center, cross-sectional survey was performed on 93 terminal cancer patients. The questionnaire solicited their opinions regarding participation in treatment decision making, as well as quality of life (European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care) and quality of death (Good Death Inventory-Patient Version).
  
  
  RESULTS
  A total of 78.5% of the patients had awareness of their terminal status, while 21.5% did not; 42.4% stated that they knew their condition and shared the decision-making responsibility with the medical staff and their family, while 21.7% made decisions on their own, and 35.9% left the decision-making responsibility to others. Patients who were aware of their illness and who actively participated in the decision making did not score higher than others on outcome measures of quality of life and quality of death. Moreover, the former even showed lower scores in some domains, including the 'physical and psychological comfort' (4.99 versus 5.61, p = 0.03), 'environmental comfort' (5.51 versus 6.04, p = 0.08), and 'emotional functioning' (55.70 versus 71.01, p = 0.06).
  
  
  CONCLUSIONS
  in Korea, patient autonomy is not a universally accepted value from the perspectives of terminal cancer patients, nor is patient involvement in decision making always conducive to high quality of life or quality of death. The level of information and the pace at which it is provided should be tailored to each individual's ability, preference, need, and culture.
authors.affiliation: National Cancer Control Institute, National Cancer Center, Korea.
authors.forename: Ha Na
authors.initials: HN
authors.lastname: Mo
authors.forename: Dong Wook
authors.initials: DW
authors.lastname: Shin
authors.forename: Jae Ha
authors.initials: JH
authors.lastname: Woo
authors.forename: Jin Young
authors.initials: JY
authors.lastname: Choi
authors.forename: Jina
authors.initials: J
authors.lastname: Kang
authors.forename: Young Ji
authors.initials: YJ
authors.lastname: Baik
authors.forename: Yu Rae
authors.initials: YR
authors.lastname: Huh
authors.forename: Joo Hee
authors.initials: JH
authors.lastname: Won
authors.forename: Myung Hee
authors.initials: MH
authors.lastname: Park
authors.forename: Sang Hee
authors.initials: SH
authors.lastname: Cho
mesh_terms: D000368:Aged; D001293:Attitude to Death; D003430:Cross-Sectional Studies; D003469:Culture; D003657:Decision Making; D056911:Democratic People's Republic of Korea; D004992:Ethics, Medical; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D026684:Personal Autonomy; D011788:Quality of Life / Q000523:psychology*; D013727:Terminal Care / Q000941:ethics* / Q000523:psychology*; D014342:Truth Disclosure