[PDF][PDF] Silence at the end of life: Multivocality at the edges of narrative possibility

A Samuels - American Anthropologist, 2023 - scholarlypublications …
American Anthropologist, 2023scholarlypublications …
“If God wants her to get better, she will get better,” Nila said in a comforting way. 1 We were
in a major public hospital in the city of Banda Aceh, standing at the bedside of a young
woman suffering from AIDS-related toxoplasmosis, and talking to the mother who nodded
acquiescingly while gently rubbing her unconscious daughter's cold legs. Back in the
hospital corridor, Nila whispered that it was extremely rare that anyone would recover from
such a grave condition. Nila was one of the HIV-support-group workers with whom I …
“If God wants her to get better, she will get better,” Nila said in a comforting way. 1 We were in a major public hospital in the city of Banda Aceh, standing at the bedside of a young woman suffering from AIDS-related toxoplasmosis, and talking to the mother who nodded acquiescingly while gently rubbing her unconscious daughter’s cold legs. Back in the hospital corridor, Nila whispered that it was extremely rare that anyone would recover from such a grave condition. Nila was one of the HIV-support-group workers with whom I conducted participant observation during my ethnographic fieldwork on HIV care in the Indonesian province of Aceh. Her soothing religious words were exemplary of a way of talking that characterized interactions and stories of end-of-life care. Rarely would caregivers directly refer to the end of life as nearby, or dying as a process one needed to start preparing for. Life and death, people in Islamic Aceh cautioned, are in God’s hands, so one could never know with certainty whether the last phase of life had started.
In recent decades, there has been a growing societal and academic interest in silence around death and dying. With the growing medicalization of death, social scientists argue, dying has become at once further postponed and more difficult to discuss, giving rise to countertrends that encourage an open discussion of dying. 2 Yet, if the unspeakability of dying is increasingly thought of as a problem, anthropologists have also nuanced the emphasis on speech in end-of-life care models, showing how people may care in and through silence (Shohet, 2021), how different cultural and ethical notions of (not) discussing death and dying meet (Arkin, 2020; Aulino, 2019; Stonington, 2020) and how nondisclosure of terminal illness may be a way to cope with social and psychological demands, by temporarily living “as if” healing would still be possible (Banerjee, 2020). As processes of dying are culturally diverse and always socially situated, so are the affects, experiences, and moral evaluations of the silences that permeate the social worlds people navigate at the end of life.
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