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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

Korean

심각한 취약성 환자들은 병원 포털, 생리학적 프레임 모니터링 장치, 소비자 건강 응용 프로그램 및 생애 종말 치료 플랫폼을 통해 광범위한 디지털 건강 데이터를 생성합니다. 그러나이 데이터를 통제 할 수있는 능력은 체계적으로 최종 치료의 구조적 조건에 의해 손상됩니다. 21 명의 심각한 환자, 11 명의 가족 관리자, 8 명의 의사가 병원에서 채용하는 광범위한 디지털 건강 데이터를 통해 심층적 인 심층적 인 인터뷰를 통해,이 연구는 디지털 개인 정보 보호 상황과 생애 종말 상황에서 환자의 주관적 태도를 검토합니다. 테마 분석은 디지털 개인 정보 보호 문제의 다섯 가지 구조적 차원을 밝힙니다 : 의미있는 정보 동의없이 지속적인

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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