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

• Published in: Annals of physical and rehabilitation medicine Vol. 63; no. 6; pp. 483 - 487
• Main Authors: Yan, Yifan, Demertzi, Athena, Xia, Yinyan, Wang, Jing, Hu, Nantu, Zhang, Zhiliang, Di, Haibo, Laureys, Steven
• Format: Journal Article Web Resource
• Language: English
• Published: Elsevier Masson SAS 01.11.2020; Elsevier Masson
• Subjects: Attitude; End-of-life; Locked-in syndrome; Neurosciences & behavior; Neurosciences & comportement; Sciences sociales & comportementales, psychologie; Social & behavioral sciences, psychology; Survey; Unresponsive wakefulness syndrome; End-of-life; Survey; Unresponsive wakefulness syndrome; Locked-in syndrome; Attitude
• ISSN: 1877-0657; 1877-0665; 1877-0665
• DOI: 10.1016/j.rehab.2019.09.011

•A survey of people in China thought that life-sustaining treatment should not be stopped in individuals with chronic locked-in syndrome. Especially neurologists thought that it might also be unnecessary to withdraw life-sustaining treatment because the locked-in syndrome is not terminal or irreversible.•The survey did not identify a dissociation between personal preferences and general opinions, possibly because of a social uniformity in China where individualism is less pronounced.•Families experience the stress of caring for individuals with locked-in syndrome. The quality-of-life score was lower for relatives than non-relatives. 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. 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. 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). 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.