Clinical and ethical challenges in decision-making for patients with disorders of consciousness and locked-in syndrome from Chinese neurologists' perspectives.

Abstract

Background: The diagnosis of and life-sustaining treatment (LST) for patients with disorders of consciousness (DoC) and locked-in syndrome (LIS) have been the subject of intense debate.

Objective: We aim to investigate the application of diagnostic knowledge, opinions about the administration of LST, and ethical challenges related to DoC and LIS.

Design: A cross-sectional study.

Methods: A survey was conducted among Chinese neurologists. Questionnaires included three vignettes (unresponsive wakefulness syndrome (UWS); minimally conscious state (MCS), and LIS). They were randomly distributed among neurologists from August 2018 to December 2019.

Results: A sample of 360 questionnaires was included (response rate: 78%). Overall, 63% of the participants chose the correct diagnostic category. The neurologists who received the MCS case chose the category more accurately than the neurologists with the UWS (p < 0.001) and LIS case (p = 0.002). Most neurologists preferred never to limit LST for their patients (47%, 63%, and 67% in UWS, MCS, and LIS groups, p = 0.052). A large group of neurologists believed UWS patients could feel pain (73%), with no difference from MCS and LIS patients (p > 0.05). Deciding for patients in the absence of surrogates was rated extremely challenging.

Conclusion: A large proportion of Chinese neurologists in our study didn't apply the accurate diagnostic categories to the description of DoC and LIS patients. This calls for more education and training. Most Chinese neurologists were reluctant to limit LST for patients. This may indicate that there may be a need to emphasize the allocation of more resources toward long-term care in China.