Digital privacy risks rise for terminally ill patients in care settings
When Care Expands and Control Declines: Understanding Digital Privacy in End-of-Life Care
Computers and SocietyCryptography and SecurityHuman-Computer Interaction
Summary
Terminally ill patients produce lots of digital health data, but often lose control over it due to the nature of end-of-life care. The authors studied interviews with patients, caregivers, and doctors and found that privacy challenges include lack of clear consent, cognitive decline, sharing within families, and poor rules for data after death. Patients showed different levels of privacy awareness, from unaware to actively managing with difficulty to giving up. Caregivers and doctors often expand access for care but face unclear privacy boundaries. The authors suggest designing better privacy tools and governance specific to dying patients.
What this means in practice
- •For healthcare privacy designers: Create privacy-by-design features and detailed permission controls specifically addressing the needs of terminally ill patients and their proxies.
- •For hospital data governance teams: Develop institutional guidelines for managing digital health data privacy during and after end-of-life care informed by patient, caregiver, and physician perspectives.
- •For digital health product developers: Design end-of-life care platforms that incorporate controls and workflows to handle cognitive decline and data access expansions securely.$Commercial implications: Supports creating commercially viable care platforms with improved privacy controls for terminal patients and their families.
Authors
Yibo Meng, Bingyi Liu, Lionel Z. Wang, Zhuoran Lu
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.