To Tell or Not: Chinese Older Adults' Preferences for Disclosing or Concealing Serious Illness Diagnoses

Abstract

Background and objectives: Knowledge of one's medical diagnosis is critical for end-of-life decision making. However, a patient's right to know their diagnosis is neither guaranteed nor protected by law in China. Doctors typically inform family members of the patient's illness diagnosis and prognosis and let the family decide whether to disclose this information to the patient. This study examines midlife and older Chinese adults' preferences for disclosure of their own and significant others' diagnoses, and the sociodemographic, economic, and cultural factors associated with these preferences.

Research design and methods: We surveyed 571 adults ages 50+ in Shanghai from 2021 to 2022. Our outcome measures are preferences for diagnosis disclosures, including whether and to whom diagnoses should be disclosed. We characterize preference types using latent class analysis, and estimate multinomial logistic regression to identify the covariates associated with each preference type.

Results: Three latent classes were identified. The transparent group (34%) believed patients, whether self or a significant other, should be informed of their own diagnoses. The contradictory group (50%) held conflicting attitudes; they preferred to know their own diagnosis but preferred that significant others not be informed of their diagnoses. The avoidant group (16%) preferred not to know their own diagnosis and similarly preferred not to disclose significant others' diagnoses to them. Familism attitudes were positively associated with holding contradictory views. Experiences with hospitalization and medical decision making for family members were associated with holding transparent views.

Discussion and implications: We discuss the importance of illness disclosure for honoring patients' autonomous decision making.

Keywords: China; End of life; Health communication.