The Emotional Regime of Medicalized Dying: Shame, Stigma, and Double Binds

Abstract: The medicalization of death has been a profound transformation in death and dying. With skilled professionals, advanced medications, and technologies, responsibility for managing the dying process transferred from private homes to hospitals and clinics. The medicalization of dying represents a technological transformation and geo-social displacement. It also constitutes an “emotional regime,” a concept that I deploy from the history of emotions, in which control and opacity about dying are prioritized and governed by unspoken rules regarding how patients and families should behave and feel. Those who are seriously ill or dying and their families find themselves in a double bind. On the one hand, metaphors like “battling” illness and becoming a “survivor” of disease suggest that certain attitudes and choices, such as refusing arduous or invasive treatment, represent a kind of biomedical failure—a failure to accept potentially beneficial treatment. On the other hand, persisting with aggressive and costly interventions at the end of life can be perceived as another failure—a failure to accept reality by dying peacefully. In pursuit of the so-called ‘good death,’ these unwritten rules shape the scripts, interactions, and decisions made by patients and family members. In this paper, I argue that the medicalization of death is part of an emotional regime that imposes emotional and affective burdens on patients and families. I examine three specific double binds associated with relational spheres and illustrate how these may serve as vectors for shame and stigma in end-of-life care for those failing to perform expected emotional responses.

Keywords: Medicalization of death, History of Emotions, Affect Theory