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Surrogate Decision Makers and Proxy Ownership: Challenges of Privacy Management in Health Care Decision Making

机译:代理决策者和代理人所有权:隐私管理在医疗保健决策中的挑战

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摘要

This study explored the communicative experiences of surrogates who served as decision makers for patients who were unable to convey health information and choices about treatment options. Drawing on assumptions from communication privacy management theory (Petronio, 2002), 35 surrogates were interviewed to explore how they navigated the role of guardian of patients’ private health information while the patient was hospitalized. This research determined that not only are surrogates guardians and thereby co-owners of the patients’ private health information, they actually served in a “proxy ownership” role. Surrogates described obstacles to both obtaining and sharing private health information about the patient, suggesting that their rights as legitimate co-owners of the patients’ information were not fully acknowledged by the medical teams. Surrogates also described challenges in performing the proxy ownership role when they were not fully aware of the patient’s wishes. Theoretical and practical implications of these challenges are discussed.
机译:这项研究探索了代理人的沟通经验,这些代理人是无法传达健康信息和治疗方案选择的患者的决策者。根据通信隐私管理理论的假设(Petronio,2002年),对35名代孕者进行了访谈,以探讨他们在患者住院期间如何导航患者私人健康信息监护人的角色。这项研究确定,不仅是代孕监护人,而且是患者私人健康信息的共同所有人,他们实际上还扮演着“代理人拥有”的角色。代理人描述了获取和共享有关患者私人健康信息的障碍,这表明医疗团队并未完全承认其作为患者信息合法合法所有人的权利。代理人还描述了在他们完全不了解患者意愿的情况下执行代理人所有权角色时遇到的挑战。讨论了这些挑战的理论和实践意义。

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