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Where angels fear to tread: proxy consent and novel technologies.

机译:天使害怕践踏的地方:代理同意书和新颖技术。

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BACKGROUND: Individuals suffering from severe disorders of consciousness (DOC) face a bleak prognosis and are susceptible to therapeutic neglect according to Fins. Because of the increasing occurrence of severe brain injury, some physicians and researchers take the study of DOC to be a moral imperative and perceive novel technologies, such as Deep Brain Stimulation (DBS), as offering potential therapeutic benefit. METHOD: This article examines the decisional process faced by proxy decision-makers for patients with severe DOC when confronted by novel treatments such as DBS. RESULTS: If there is awareness in the literature that surrogate consent is complicated by the contingencies of severe brain injury such as disability and the possibility of long-term care, surrogate consent is often equated with substituted judgement and taking the best interests of the patient into account. However, for surrogates of patients with severe DOC, advocacy becomes a central component of the surrogate's role as there is no established standard of care for these patients in the post-acute phase. If participation in research is offered, the surrogate may perceive research participation as a way of providing benefits such as stimulation and some rehabilitation services for the patient. CONCLUSION: Researchers need to be aware how the absence of a standard of care can shape surrogate choice.
机译:背景:根据Fins的说法,患有严重意识障碍(DOC)的人的预后很差,很容易被治疗忽视。由于严重的脑损伤的发生率越来越高,一些医生和研究人员认为对DOC的研究是道义上的当务之急,并认为诸如深部脑刺激(DBS)之类的新技术具有潜在的治疗益处。方法:本文探讨了代理决策者在面对重度DOC的患者(如DBS等新疗法)时所面临的决策过程。结果:如果在文献中意识到替代同意书因严重的脑损伤(例如残疾)和长期护理的可能性而复杂化,那么替代同意书通常等同于替代性判断,并考虑患者的最大利益帐户。但是,对于严重DOC患者的代孕而言,代言成为代孕者角色的重要组成部分,因为在急性后阶段尚无针对这些患者的既定护理标准。如果提供参与研究,则代理人可以将研究参与视为为患者提供诸如刺激和某些康复服务之类的好处的方式。结论:研究人员需要意识到缺乏护理标准如何影响替代选择。

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