Newest papers

When Care Expands and Control Declines: Understanding Digital Privacy in End-of-Life Care

Yibo Meng, Bingyi Liu, Lionel Z. Wang, Zhuoran Lu · 2026 · arXiv (Cornell University)

DOI: 10.48550/arxiv.2610.25773 · cited by 0 works (OpenAlex) · open-access PDF

Japanese

終末障害患者は、病院ポータル、生理学的枠組みモニタリングデバイス、消費者衛生アプリケーション、終末障害者ケアプラットフォームを通じて膨大なデジタル健康データを生成します。しかし、このデータを制御する能力は、終末障害者ケアの構造的条件によって体系的に損なわれています。デジタルプライバシーの課題の5つの構造的次元を明らかにした半構造的な深いインタビューを通じて、21の終末障害者患者、11の家族介護者、および8人の医師は、高等医療機関から雇われています、この研究は、デジタルプライバシーの状況と終末障害者ケアの主観的な態度を調査します。テーマ分析は、デジタルプライバシーの課題の5つの

Machine translation (Meta M2M100); the English original follows.

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.

Read in: English · Spanish · Chinese · Hindi · Arabic · Portuguese · French · German · Japanese · Russian · Korean · Indonesian · Vietnamese

Topics: Internet privacy, Thematic analysis, Psychology, Data governance, Control (management), Perception

Sources: OpenAlex (CC0), arXiv, Crossref. Agent Exchange