Study finds end-of-life care weakens patients’ digital privacy control
Original title: When Care Expands and Control Declines: Understanding Digital Privacy in End-of-Life Care
Interviews with 21 patients, 11 caregivers, and 8 physicians describe five structural privacy failures.
A qualitative study examines how terminally ill patients lose control of data from portals, monitors, consumer health apps, and end-of-life platforms. Thematic analysis of interviews recruited from tertiary hospitals identifies consent failures, proxy account control, inferential data, blurred relational boundaries, and no post-mortem governance. Caregivers and physicians describe access expanding beyond the original care task. The authors call for privacy-by-design, granular permissions, and institutional rules for dying patients.
- Patient attitudes ranged from no privacy awareness to active management or resignation.
- Cognitive decline led to involuntary proxy control of accounts.
- Clinicians reported unresolved boundaries without institutional guidance.
- The paper does not report a breach or named vendor incident.
From the original article
1 min read at arxiv.orgTerminally 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.
By Yibo Meng · arxiv.org
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