Treatment Search Fatigue and Informed Consent.
Treatment Search Fatigue and Informed Consent.
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DOI：
10.1080/21507740.2020.1866115
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发表时间：
2021-01
影响因子：
--
通讯作者：
Lázaro-Muñoz G
中科院分区：
文献类型：
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作者：
Zuk P;Lázaro-Muñoz G
Mergenthaler及其同事在人类颅内电生理学研究中提供了招募和同意的重要经验数据。在这种情况下，一个特别重要的现象是我们称之为治疗搜索疲劳。有资格参加新型电生理干预（如深部脑刺激（DBS））治疗难治性疾病（如运动和精神疾病）有效性的实验试验的患者通常有这些疾病的严重表现，并且经历了许多不成功的治疗。这种经验可能会使患者更愿意承担与这种或其他新型干预措施试验相关的风险和负担。在提出了治疗搜索疲劳可能在原则上威胁知情同意的一些潜在方式之后，我们仍然警告不要假设它总是或甚至经常这样做。许多这些症状的内在、经验性及其对生活质量的影响意味着，患者最有能力判断其危害，并在决策时相应地权衡这种危害。让其他人感到绝望的，实际上可能是对这些症状的难以忍受程度的准确评估，就像从内部体验到的那样。这可能会增加患者承担某些风险和负担的意愿甚至渴望，这些风险和负担对其他人来说是不合理的，但基于他们持续的症状严重程度，他们值得承担，因为这些症状可能会为他们自己和/或研究可能有一天受益的其他人缓解。
Mergenthaler and colleagues have provided important empirical data on recruitment and consent in human intracranial electrophysiology research. One phenomenon that is particularly important in this context is what we call treatment search fatigue. Patients who are eligible for experimental trials examining the effectiveness of novel electrophysiological interventions such as deep brain stimulation (DBS) for managing treatment-resistant conditions (e.g., movement and psychiatric disorders) generally have severe presentations of these conditions and have undergone numerous unsuccessful treatments. This experience could potentially lead patients to be more willing to undertake the risks and burdens associated with trials of this or other novel interventions. After suggesting some potential ways in which treatment search fatigue could in principle threaten informed consent, we nonetheless caution against assuming that it always or even often does so. The internal, experiential nature of many of these symptoms and their effect on quality of life implies that it is patients who are best-positioned to judge their harmfulness and weigh such harmfulness accordingly in decision-making. What strikes others as desperation might in fact be an accurate assessment of the intolerability of these symptoms, as experienced from the inside. This may increase patients’ willingness and even eagerness to undertake certain risks and burdens that strike others as unjustified, but based on their persistent symptom severity are to them worth taking on in light of the possibility that these symptoms could be relieved for themselves and/or others whom the research may someday benefit.