Ethics of life-sustaining treatment in locked-in syndrome: A Chinese survey.

ABSTRACT

BACKGROUND: Locked-in syndrome (LIS) characterizes individuals who have experienced pontine lesions, who have limited motor output but with preserved cognitive abilities. Despite their severe physical impairment, individuals with LIS self-profess a higher quality of life than generally expected. Such third-person expectations about LIS are shaped by personal and cultural factors in western countries. OBJECTIVE: We sought to investigate whether such opinions are further influenced by the cultural background in East Asia. We surveyed attitudes about the ethics of life-sustaining treatment in LIS in a cohort of medical and non-medical Chinese participants. RESULTS: The final study sample included 1545 respondents medical professionals (n=597, 39%), neurologists (n=303, 20%), legal professionals (n=276, 18%) and other professionals (n=369, 24%), including 180 family members of individuals with LIS. Most of the participants (70%), especially neurologists, thought that life-sustaining treatment could not be stopped in individuals with LIS. It might be unnecessary to withdraw life-sustaining treatment, because the condition involved is not terminal and irreversible, and physical treatment can be beneficial for the patient. A significant proportion (59%) of respondents would like to be kept alive if they were in that condition; however, older people thought the opposite. Families experience the stress of caring for individuals with LIS. The mean (SD) quality of life score for relatives was 0.73 (2.889) (on a -5, +5 scale), which was significantly lower than that of non-relatives, 1.75 (1.969) (P<0.001). CONCLUSIONS: Differences in opinions about end of life in LIS are affected by personal characteristics. The current survey did not identify a dissociation between personal preferences and general opinions, potentially because of a social uniformity in China where individualism is less pronounced. Future open-ended surveys could identify specific needs of caregivers so that strategic interventions to reduce ethical debasement are designed.