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[谈论难以启齿之事:从以患者为中心的医疗到姑息性家长主义的见解。]

[Talking about unspeakable: insights from patient-centered medicine to palliative paternalism.].

作者信息

Del Negro Silvia Maria Luisa, Borghi Lidia, Ferrari Daris, Vegni Elena

机构信息

USD Psicologia Clinica, Dipartimento di Scienze della Salute, Università di Milano.

UO Oncologia Medica, ASST Santi Paolo e Carlo - Polo Universitario, Milano.

出版信息

Recenti Prog Med. 2017 Dec;108(12):508-510. doi: 10.1701/2829.28582.

Abstract

The literature highlights the importance of involving the patient as a partner of care, using a patient-centered approach aimed at improving a process of share decision-making. However, there are clinical situations in which a shared decision-making process is difficult and its actual achievement is even more complex, as in the case of end-of-life decisions, in which a decision about death is a tremendous weight for both patients and their caregivers. In such situations, we wonder what kind of position physicians should assume in order to be patient-centered but also to reduce the patient suffering. Our proposal is to assume the perspective of palliative paternalism: doctors should provide a communication approach that determines the appropriate level of patient/parent autonomy in the process of decision making. In other words, doctors are required to share the information with patients, according to their desires, possibilities and resources, and to facilitate a share-decision making process. However, when the time of the decision comes, physicians should take full responsibility for giving voice to the patient's choices, putting them in action in his/her end of life and raising patients and their caregivers from the burden linked to the actual implementation of the decision.

摘要

文献强调了让患者作为护理伙伴参与其中的重要性,采用以患者为中心的方法旨在改善共同决策过程。然而,在某些临床情况下,共同决策过程很困难,其实际达成更为复杂,比如在临终决策中,关于死亡的决策对患者及其护理人员来说都是巨大的负担。在这种情况下,我们想知道医生应该采取什么样的立场,既能以患者为中心,又能减轻患者的痛苦。我们的建议是采取姑息家长主义的视角:医生应提供一种沟通方式,在决策过程中确定患者/家属适当的自主程度。换句话说,医生需要根据患者的愿望、可能性和资源与患者分享信息,并促进共同决策过程。然而,当决策时刻到来时,医生应完全负责表达患者的选择,在患者生命末期将这些选择付诸行动,并使患者及其护理人员摆脱与决策实际执行相关的负担。

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