When Care Expands and Control Declines: Understanding Digital Privacy in End-of-Life Care
Abstract: Terminally ill patients generate extensive digital health data through hospital portals, physiological monitoring devices, consumer health applications, and end-of-life care platforms. Yet their ability to control this data is systematically undermined by the structural conditions of terminal care. Through semi-structured in-depth interviews with 21 terminally ill patients, 11 family caregivers, and 8 physicians recruited from tertiary hospitals, this study examines the digital privacy circumstances and subjective attitudes of patients in end-of-life contexts. Thematic analysis reveals five structural dimensions of digital privacy challenge: continuous bodily digitization without meaningful informed consent; cognitive decline driving involuntary proxy control of accounts; inferential data generation exceeding patients' epistemic boundaries; dissolution of individual privacy boundaries amid relational network restructuring; and the absence of institutional governance over post-mortem data. Patient privacy attitudes span three profiles: fundamental absence of privacy awareness, sustained active management under severe tool constraints, and perception of problems followed by resigned abandonment. Interviews with caregivers and physicians reveal benevolent substitution in the name of care needs, expansion of access beyond the initial task, and unresolved boundaries under absent institutional guidance. These findings reveal a compounding privacy vulnerability unique to end-of-life contexts and call for privacy-by-design principles, granular permission mechanisms, and institutional governance frameworks tailored to the needs of dying patients.