Confronting Mortality: End-of-Life Care and the Limits of Biomedicine in Urban China

Abstract

With increasing numbers of people dying in medical facilities in urban China, the medicalization of dying is transforming the ways in which patients, their families, and clinicians confront mortality. Based on ethnographic fieldwork conducted in Beijing hospitals during the summers of 2017 and 2019, I explore the politico-economic factors and sociocultural logics shaping the experiences of the critically ill and their caregivers. While the hospice and palliative care movements in the U.S. and Europe have focused on the autonomy and dignity of the individual patient through initiatives such as 'My Death, My Decision' and 'Five Wishes,' urban China offers a very different perspective on decision-making at the end of life. In China's fee-for-service medical system, patients cede responsibility to their families. Choices about (and payment for) treatment and care are made by family members, with concerned relatives and clinicians often withholding diagnoses and prognoses from patients. I will examine how this mode of familial decision-making has been profoundly shaped by successive rounds of health reforms prioritizing advanced biomedical interventions at tertiary hospitals, the persistence of the hukou household registration system in determining access to geographically-based health insurance, the gendered nature of caregiving, and changes in family structure in the aftermath of stringent birth planning policies. I will analyze decisions to pursue or forego invasive biomedical treatments such as intubation and mechanical ventilation, paying particular attention to how 'do not resuscitate' orders are made, rejected, and/or experienced by patients, their families, and clinicians.