The burden of normality: from 'chronically ill' to 'symptom free'. New ethical challenges for deep brain stimulation postoperative treatment

The burden of normality: from 'chronically ill' to 'symptom free'. New ethical challenges for deep brain stimulation postoperative treatment
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DOI:
10.1136/medethics-2011-100044
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发表时间:
2012-07-01
影响因子:
4.1
通讯作者:
Gilbert, Frederic
Gilbert, Frederic
中科院分区:
人文科学1区
文献类型:
--
作者:
Gilbert, Frederic

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虽然深部脑刺激 (DBS) 是一种侵入性医疗干预措施,但在过去 20 年里一直被认为是治疗帕金森病的有效且安全的方法。就临床伦理而言,值得一问的是,使用 DBS 是否可能会产生与其他类型的精神外科手术类似的意外负面影响。对接受前颞叶切除术的癫痫患者进行的临床研究发现,在心理、行为、情感和社交等多个领域存在一系列副作用和并发症。在许多情况下,患者表示很难从慢性病状态调整到“已治疗”或“无癫痫发作”的新状态。这种术后反应调整在癫痫文献中被描述为“正常负担”(BoN)综合征。大多数关于 DBS 术后自我改变的讨论都集中在干预引起的异常副作用(即性欲亢进、轻度躁狂等)。相比之下,人们相对较少关注这样的观点:成功“治疗”的个体在适应变得“正常”时可能会遇到困难。本文的目的是(1)阐明 BoN 综合征的术后 DBS 心理社会调整过程,(2)解决 BoN 综合征是否表明 DBS 治疗对患者的身份构成威胁,以及(3)检查 DBS 手术后的当前康复框架是否应该更新,并将 BoN 综合征考虑为术后自我改变反应。
Although an invasive medical intervention, Deep Brain Stimulation (DBS) has been regarded as an efficient and safe treatment of Parkinson's disease for the last 20 years. In terms of clinical ethics, it is worth asking whether the use of DBS may have unanticipated negative effects similar to those associated with other types of psychosurgery. Clinical studies of epileptic patients who have undergone an anterior temporal lobectomy have identified a range of side effects and complications in a number of domains: psychological, behavioural, affective and social. In many cases, patients express difficulty adjusting from being chronically ill to their new status as 'treated' or 'seizure free'. This postoperative response adjustment has been described in the literature on epilepsy as the 'Burden of Normality' (BoN) syndrome. Most of the discussion about DBS postoperative changes to self is focused on abnormal side effects caused by the intervention (ie, hypersexuality, hypomania, etc). By contrast, relatively little attention is paid to the idea that successfully 'treated' individuals might experience difficulties in adjusting to becoming 'normal'. The purpose of this paper is (1) to articulate the postoperative DBS psychosocial adjustment process in terms of the BoN syndrome, (2) to address whether the BoN syndrome illustrates that DBS treatment poses a threat to the patient's identity, and (3) to examine whether the current framework for rehabilitation after DBS procedures should be updated and take into account the BoN syndrome as a postoperative self-change response.