Moral Distress in Deciding How Others Die

ABSTRACT:This essay discusses how Susan Shapiro’s Speaking for the Dying (2019) contributes to understanding surrogate decision-making in intensive care. Shapiro’s ethnography is based on over two years of observing day-to-day decision-making by surrogates and family members who found themselves having to speak for loved ones who were no longer capable of expressing their own wishes for treatment or its termination. After summarizing Shapiro’s specific findings—in particular what made no observable difference in decision-making, including advance directives—greater attention is given to how she acts as a witness to the emotional burden and distress that these decisions cause for both family members and professional staff. Shapiro allows us to hear the voices of people forced to make high-stakes decisions in the most stressful conditions with little guidance. We hear the contradictions inherent in surrogate decision-making and gain insight into how the institutional organization of intensive care produces moral distress.