Family surrogate decision-makers’ perspectives in decision-making of patients with disorders of consciousness

Abstract

ABSTRACT To explore and describe the experience of decision-making for patients with disorders of consciousness (DOC) from the perspectives of family surrogate decision-makers. A total of 21 face-to-face interviews with family surrogate decision-makers from a tertiary hospital in Shanghai, China were conducted from January 2021 to February 2021. Thematic analysis was used for data analysis. Four main themes were identified and were included in this study: (1) a tough choice between life and dignity, (2) a major responsibility for patient’s voice, (3) complex considerations between ethics and morals, and (4) the importance of realistic basis. The surrogate decision-making of DOC patients in China has been affected by the Chinese cultural context and several practical roots. And the family surrogate decision-makers shared their experiences of trade-offs during the decision-making process. Moreover, family surrogate decision-makers realized their serious responsibility to make a decision that would be in the best interest of DOC patients.