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Palliative care and locked-in syndrome: Brazilian case report

Hospice & Palliative Medicine International Journal
Marilia Bense Othero PhD, Juraci Aparecida Rocha MD

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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. 


locked-in syndrome, neurology, long term neurological conditions, palliative care