Universidade de São Paulo, Faculdade de Medicina, Hospital das Clínicas, Divisão de Neurologia, São Paulo SP, Brazil.
Universidade de São Paulo, Faculdade de Medicina, Hospital das Clínicas, Instituto da Criança, Unidade de Dor e Cuidados Paliativos, São Paulo SP, Brazil.
Arq Neuropsiquiatr. 2022 May;80(5 Suppl 1):328-335. doi: 10.1590/0004-282X-ANP-2022-S119.
This article aims to expand the understanding of how it is possible to alleviate suffering and enable a dignified life trajectory for patients with progressive neurological diseases or with severe and permanent neurological impairment. The four most common disease trajectories described for people with chronic and progressive disease used to advance care planning, Brazilian normative ethical resolutions, evidence-based benefits of palliative care (PC), as well as particularities of PC in neurology, such as neurological symptom control, caring for existential and psychological suffering, care provider's needs and particularities of pediatric neurologic PC are reviewed.
本文旨在加深人们对如何减轻患有进行性神经疾病或严重且永久性神经损伤的患者的痛苦并使其能够过上有尊严的生活的理解。本文回顾了慢性进行性疾病患者的四种最常见的疾病进展轨迹,这些轨迹用于推进预先护理计划、巴西规范伦理决议、姑息治疗(PC)的循证获益,以及神经病学中 PC 的特殊性,如神经症状控制、照顾存在和心理痛苦、护理人员的需求以及儿科神经病学 PC 的特殊性。