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Updated: Nov 26, 2025

Characterization of the Sense of Agency over the Actions of Neural-machine Interface-operated Prostheses
Published on: January 7, 2019
Surrogates, Chaos, and the Inadequacy of Autonomy
Abstract:
In Speaking for the Dying: Life-and-Death Decisions in Intensive Care, Susan Shapiro attempts to penetrate and organize the chaotic communications between physicians and family members who are making medical decisions for people who have lost the capacity to make their own medical decisions. The work is based on observations undertaken by Shapiro and a coresearcher of one thousand encounters between physicians and the family members of two hundred patients too sick to participate. Their ethnographic work, which is both traditional and innovative, leads to stunning findings. They reveal an inadequacy among surrogates that is undeniable, vast, and potentially tragic-if measured by the questionable standard of adhering to the patient's preferences. Further confirming research would be helpful, but what Shapiro has recognized already should shake the foundations of advance care planning.
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