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涉及儿童临终决策和姑息治疗的困境与难题。

Dilemmas and difficulties involving end-of-life decisions and palliative care in children.

作者信息

Piva Jefferson Pedro, Garcia Pedro Celiny Ramos, Lago Patrícia Miranda

机构信息

Faculdade de Medicina, Universidade Federal do Rio Grande do Sul, Porto Alegre, RS, Brasil.

Faculdade de Medicina, Universidade Católica do Rio Grande do Sul, Porto Alegre, RS.

出版信息

Rev Bras Ter Intensiva. 2011 Mar;23(1):78-86.

Abstract

This review discusses the main dilemmas and difficulties related to end-of-life decision's in children with terminal and irreversible diseases and propose a rational sequence for delivering palliative care to this patients' group. The Medline and Lilacs databases were searched using the terms 'end of life', 'palliative care', 'death' and 'terminal disease' for articles published in recent years. The most relevant articles and those enrolling pediatric patients were selected and compared to previous authors' studies in this field. The current Brazilian Medical Ethics Code (2010) was analyzed regarding end-oflife practices and palliative care for terminal patients. Lack of knowledge, insufficient specific training, and legal concerns are the main reasons why end-of-life decisions in terminal children are based on medical opinion with scarce family participation. The current Brazilian Medical Ethics Code (2010) fully supports end-of-life decisions made consensually with active family participation. Honest dialogue with the family regarding diagnostic, prognostic, therapeutic and palliative care measures should be established gradually to identify the best strategy to meet the child's end-of-life needs. Treatment focused on the child's welfare combined with the family's participation is the basis for successful palliative care of children with terminal diseases.

摘要

本综述讨论了与患有终末期和不可逆疾病儿童的临终决策相关的主要困境和难题,并为该患者群体提供姑息治疗提出了合理的流程。使用“临终”“姑息治疗”“死亡”和“终末期疾病”等术语在Medline和Lilacs数据库中检索近年来发表的文章。挑选出最相关的文章以及纳入儿科患者的文章,并与该领域先前作者的研究进行比较。分析了现行巴西医学伦理法典(2010年)中关于终末期患者临终实践和姑息治疗的内容。知识匮乏、缺乏专业培训以及法律问题是临终儿童的临终决策基于医学意见且家庭参与极少的主要原因。现行巴西医学伦理法典(2010年)全力支持在家庭积极参与下经双方同意做出的临终决策。应逐步与家庭就诊断、预后、治疗和姑息治疗措施展开坦诚对话,以确定满足儿童临终需求的最佳策略。以儿童福祉为重点并结合家庭参与的治疗是成功为患有终末期疾病儿童提供姑息治疗的基础。

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