Concordance of Preferences for End-of-Life Care Between Terminally Ill Cancer Patients and Their Family Caregivers in Taiwan

• Published in: Journal of pain and symptom management 2005-12, Vol.30 (6), p.510-518
• Main Authors: Tang, Siew Tzuh, Liu, Tsang-Wu, Lai, Mei-Shu, Liu, Li-Ni, Chen, Chen-Hsiu
• Format: Article
• Language: English
• Subjects: Adult; Advance Directives; Age Distribution; Aged; Aged, 80 and over; Attitude to Death; Biological and medical sciences; Caregivers - statistics & numerical data; concordance of preferences; Decision Making; end-of-life care; Female; Humans; Male; Medical sciences; Middle Aged; Neoplasms - mortality; Neoplasms - therapy; Pharmacology. Drug treatments; Preferences for life-sustaining treatments; Proxy - statistics & numerical data; Resuscitation Orders; Sex Distribution; Statistics as Topic; Surveys and Questionnaires; Taiwan - epidemiology; Terminal Care - statistics & numerical data
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2005.05.019

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.