数字医疗和人类死亡:生命终结时的伦理紧张。

Murat Sariyar
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引用次数: 0

摘要

医疗保健的数字化——通过电子健康记录、预测算法、远程监控和自动化决策工具——彻底改变了临床工作流程并优化了患者管理。然而,这些发展往往会带来意想不到的后果,当应用到生命终结的背景下,死亡的主观、关系和存在维度抵制抽象和量化。本文探讨了数字效率与人类死亡现实之间的紧张关系,认为数字卫生系统的虚拟性可能会疏远患者、家庭和临床医生,而正是在这些时刻,护理必须最具体、最相关。根据医学伦理和姑息治疗文献的概念分析,我们研究了虚拟表示(数据、仪表板、协议)如何与真实的垂死身体和社会关系相互作用。通过案例说明,我们强调了为效率而设计的系统如何无意中边缘化了痛苦,使复杂的叙述扁平化,并取代了定义真实死亡的仪式和存在。我们的研究结果表明,迫切需要重新定位数字健康设计,以考虑到表征的局限性和生命末期人际关系的不可替代性。我们认为,任何未来的数字医疗模式都必须不仅优先考虑结果,而且要保留死亡的尊严、模糊性和关系完整性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Digital Care and Human Death: Ethical Tensions at the End of Life.

The digitization of healthcare - through electronic health records, predictive algorithms, remote monitoring, and automated decision-making tools - has revolutionized clinical workflows and optimized patient management. However, these developments often carry unintended consequences when applied to the end-of-life context, where the subjective, relational, and existential dimensions of dying resist abstraction and quantification. This paper explores the tensions between digital efficiency and the human realities of death, arguing that the virtuality of digital health systems risks alienating patients, families, and clinicians at precisely the moments where care must be most embodied and relational. Drawing from a conceptual analysis informed by medical ethics and palliative care literature, we examine how virtual representations (data, dashboards, protocols) interact with real dying bodies and social relationships. Through case illustrations, we highlight how systems designed for efficiency can unintentionally marginalize suffering, flatten complex narratives, and displace the rituals and presence that define authentic death. Our findings suggest a pressing need to reorient digital health design to account for the limits of representation and the irreplaceability of human connection at the end of life. We argue that any future model of digital care must not only prioritize outcomes but also preserve dignity, ambiguity, and relational integrity in death.

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