Palliative care and locked-in syndrome: Brazilian case report

M. Othero, J. Rocha
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Abstract

The Locked-in syndrome (LIS) is characterized by tetraplegia, aphasia and preservation of the level of consciousness, and it´s associated with a poor prognosis. The palliative approach to these patients is a challenge. This article aims to examine how palliative care could improve LIS patients’ quality of life. It is a case report of a male patient, 29 years, married, photographer, with LIS after traumatic brain injury (TBI), assisted at a hospice in São Paulo. Palliative Care for situations like this is still a relatively unexplored field; in Brazil, there are no published studies. The identification LIS is a clinical challenge and misdiagnosis can occur; the association of serial clinical examination, imaging tests and multimodal neurophysiological evaluation is necessary. The care provided by the Palliative Care team provided symptom control and emotional support to the patient and family. However, the integration with the Neurology team was insipient. It was observed that the access to the health services and health technologies were complicated factors. The lack of early diagnosis and rehabilitation also interfered negatively in the process, causing psychological and social suffering to the patient and his family.
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姑息治疗和闭锁综合征:巴西病例报告
闭锁综合征(LIS)的特点是四肢瘫痪、失语和意识水平的保留,并伴有不良预后。对这些病人采取姑息治疗方法是一项挑战。本文旨在探讨姑息治疗如何改善LIS患者的生活质量。这是一个病例报告,男性患者,29岁,已婚,摄影师,创伤性脑损伤(TBI)后LIS,在圣保罗临终关怀医院协助。这种情况下的姑息治疗仍然是一个相对未开发的领域;在巴西,没有发表的研究。鉴别LIS是一项临床挑战,可能发生误诊;联合一系列临床检查、影像学检查和多模式神经生理评估是必要的。姑息治疗小组提供的护理为病人和家属提供了症状控制和情感支持。然而,与神经病学团队的整合是早期的。有人指出,获得保健服务和保健技术是复杂的因素。缺乏早期诊断和康复也对这一过程产生了负面影响,给患者及其家属造成了心理和社会上的痛苦。
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