The "Actively Dying" Patient and the Making of Muslim Identities: Exploring Religious Identities Through End-of-Life Care in the United States

Abstract:This article is based upon an ethnographic study that focuses on the experiences of Muslim patients and their families in Washington, D.C. as they interact with the health care system during times of serious illness and end-of-life care. It uses the medical phrase, "actively dying," as a theoretical tool to analyze the creation, transformation, and contestation of Muslim identities and religiosity within the social, economic, and political context of the United States. Literature in the social sciences and other fields such as social work and public health has shown that religious beliefs can influence decision-making at the end of life; however, this study makes two interventions in this research. First, it demonstrates that the physical changes that occur with the onset of death can inform religious identities and religiosity. Second, while death is usually conceptualized as an end, and often described as a closure, it can be used as a starting point to study religious identity and transformation among the Muslim patients, families, and health care providers who participated in this research. This conceptualization allows one to explore how other factors - such as the financial costs associated with hospital care, the physical and emotional labors of caregiving, and the political and social climate of the United States - all play a role in the creation of religious identity. Using data collected through formal and informal interviews, observations at a hospital in a DC suburb, and visual and textual analysis, this article shows how "actively dying" is not only a useful concept to study death, but also can shed light upon how Muslim identities are formed or changed in the United States.