Methods: We surveyed 571 community-dwelling adults aged 50 and years older living independently in Shanghai, China from September 2021 to January 2022. We included 7 items measuring desired disclosure approach to self, to significant others, and with physicians. We characterized preference types using latent class analysis. Multinomial regression models on class memberships were conducted to test whether culture measured by Bardis familism scale, sociodemographic characteristics, and healthcare experiences were associated with the typology.
Results: Three latent classes, transparent, contradictory, and avoidant preferences, were identified. The transparent group (34%) preferred knowing their diagnosis and also respected significant others’ rights to know their diagnosis. The contradictory group (50%) had conflicting values. They preferred to know their diagnosis by discussing with physicians privately, but chose to conceal others’ diagnoses if their significant others have serious illnesses. The avoidant group (16%) preferred not to know their diagnosis and assumed that significant others hold the same preference. Respondents in transparent, contradictory, and avoidant groups don’t vary significantly on their age, gender, marital status, number of children, insurance type, self-reported health, and familism value. Increased familism was significantly related to being contradictory (RRR=1.03, p < 0.05). Relative to transparent type, having experiences of medical decision-making for family members was associated with a lower risk of being in the contradictory type (RRR = 0.47, p < 0.001). Having been hospitalized decrease the risk of being avoidant type by 52% (RRR = 0.48, p < 0.48).
Conclusions and Implications: As the first study of its kind, to our best knowledge, the results of the study can advise future legislation and service development of patients’ rights in long-term and EoL care in China, as well as in other Asian countries sharing similar cultures and customs. First, physicians and social workers are encouraged to discuss with patients on their preference of diagnosis disclosure and note patients’ preferences in their medical records. This will allow older adults to express their diverse preferences in advance, relieve families’ emotional burden on deciding whether to tell the truth to the older patients, and allow the doctors to communicate in a more person-centered approach without concerning legal threats. Second, interventions are needed to improve older adults’ knowledge related to care options and EoL care planning, since this factor is significantly related to typologies. Third, in our sample, only 15% of people prefer to be avoidant, suggesting that legislation of patients’ autonomy in medical care and EoL care planning may be a feasible next step in China with careful culturally-sensitive design.