Congruence of Knowledge, Experiences, and Preferences for Disclosure of Diagnosis and Prognosis between Terminally-Ill Cancer Patients and Their Family Caregivers in Taiwan

Abstract

Background. Over the last 40 years, studies have shown cultural differences in attitudes toward truth telling at the end-of-life. Nevertheless, the argument that cancer patients from an Asian culture have different preferences about information disclosure that necessitate significantly modifying information disclosure practices has not been validated by direct investigation from patients' points of view. Methods. Six hundred seventeen dyads of patient-designated family caregivers across 21 hospitals throughout Taiwan were surveyed and interviewed by a semistructured interview guide. Percentage of agreement, kappa coefficients, McNemar tests, and paired t-tests were conducted to examine the extent of congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between the dyads. Results. There were substantial discrepancies in the knowledge and experiences of being informed about the diagnosis and prognosis between Taiwanese terminally-ill cancer patients and their family caregivers (kappa values ranged from 0.08 to 0.44). Cancer patients strongly proclaimed their superior rights to be informed about their disease over their family and preferred their physicians to inform themselves before releasing any information to their family caregivers. Conclusion. The arguments that cancer patients from an Asian culture (i.e., Chinese/Taiwanese culture) have different preferences regarding being informed of their diagnosis and prognosis and that family members have legitimate superior power in decision making could not be supported by data from this group of terminally-ill cancer patients. Physicians need to respect patients' preferences rather than routinely taking the family's opinions into consideration first in the event of disagreement. Equipped with adequate information, terminally-ill cancer patients from Asia may have better opportunities to make end-of-life care decisions that are in accord with their wishes.

Keywords:

• Information disclosure
• Truth telling
• End-of-life care
• Congruence of preferences for information disclosure.