title: Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan.
abstract: There is a dearth of information in the literature about the concordance of preferences for end-of-life care between terminally ill patients and their family surrogates outside the Western countries. The purpose of this study was to examine the extent of concordance in preferences for end-of-life care goals and life-sustaining treatments between Taiwanese terminally ill cancer patients and their primary family caregivers. A total of 617 dyads of patients-family caregivers across 21 hospitals throughout Taiwan were surveyed. Overall agreements on the goals for end-of-life care and preferences for initiating life-sustaining treatments ranged from 62.4% to 96.9% (average: 71.0%). Kappa values for the extent of concordance ranged from 0.13 to 0.46 (average: 0.29), indicating poor to moderate consistency in personal preferences. Family caregivers had a significantly more aggressive attitude toward each examined life-sustaining treatment for their ill family members than the patients' own stated preferences. In societies, such as in Asian countries, where physicians' respect for patient autonomy is frequently subordinate to the power of family, disagreements between a patient and family about end-of-life care may result in the patient's preferences being overridden at the end of life. To effect real change and to gain increased agreement on preferences for end-of-life care, an open dialogue between patients and their primary family caregivers should become standard.
authors.affiliation: Graduate School of Nursing, Chang Gung University, Taipei, Taiwan, ROC.
authors.forename: Siew Tzuh
authors.initials: ST
authors.lastname: Tang
authors.forename: Tsang-Wu
authors.initials: TW
authors.lastname: Liu
authors.forename: Mei-Shu
authors.initials: MS
authors.lastname: Lai
authors.forename: Li-Ni
authors.initials: LN
authors.lastname: Liu
authors.forename: Chen-Hsiu
authors.initials: CH
authors.lastname: Chen
mesh_terms: D000328:Adult; D016223:Advance Directives; D017677:Age Distribution; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D017028:Caregivers / Q000706:statistics & numerical data*; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000401:mortality* / Q000628:therapy*; D019727:Proxy / Q000706:statistics & numerical data; D016414:Resuscitation Orders; D017678:Sex Distribution; D013223:Statistics as Topic; D011795:Surveys and Questionnaires; D013624:Taiwan / Q000453:epidemiology; D013727:Terminal Care / Q000706:statistics & numerical data*