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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

Indonesian

Namun, kemampuan mereka untuk mengendalikan data ini secara sistematis terancam oleh kondisi struktural perawatan terminal. Melalui wawancara mendalam semi-struktur dengan 21 pasien terminal, 11 pengawas keluarga, dan 8 dokter yang direkrut dari rumah sakit teritorial, studi ini mengeksplorasi keadaan privasi digital dan sikap subjektif dari pasien dalam konteks perawatan akhir. Analisis tematik mengungkapkan lima dimensi struktural dari tantangan privasi digital: digitalisasi fisik yang berkelanjutan tanpa persetujuan yang bermakna; penurunan kognitif yang mengarah pada kontrol proxy yang tidak disengaja atas akun; pengeluaran data inferensial yang melampaui batas-batas epistemologis pasien; penyelesaian batas-batas privasi interinstitutional di tengah-tengah restrukturisasi jaringan relasional; dan kurangnya kebutuhan kepemilikan jaringan institusi untuk data

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.

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

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