婴幼儿脊髓性肌萎缩症（SMA）患儿护理中的伦理问题。

Ethical aspects in the care of a child with infantile spinal muscular atrophy (SMA).

机构信息

Centre de référence des maladies neuromusculaires de l'Enfant, Neuromuscular Commission of French Society of Pediatric Neurology, Filière FINELMUS, Hôpital d'Enfants, CHU Timone, 13385 Marseille cedex 5.

Centre de référence des maladies neuromusculaires de l'Enfant, Neuromuscular Commission of French Society of Pediatric Neurology, Filière FINELMUS, Hôpital Necker, rue de Sèvres, 75015 Paris.

出版信息

Arch Pediatr. 2020 Dec;27(7S):7S50-7S53. doi: 10.1016/S0929-693X(20)30278-5.

DOI:10.1016/S0929-693X(20)30278-5

PMID:33357599

Abstract

The pediatrician has a privileged relationship with a child with infantile spinal muscular atrophy (SMA). At all times, he/she must be the child's mentor, promoting a comprehensive approach and support in order to ensure the best possible solution for the patient's autonomy. In all circumstances, an ethical stance is essential. After a reminder on the notions of ethics of care, we will address various ethical questions encountered through three critical situations during the care of a child with infantile spinal muscular atrophy: the announcement of the diagnosis, the transmission of information on innovative therapies, and palliative care and end-of-life support. © 2020 French Society of Pediatrics. Published by Elsevier Masson SAS. All rights reserved.

摘要

儿科医生与患有婴儿型脊髓性肌萎缩症（SMA）的儿童有着特殊的关系。在任何时候，他/她都必须成为孩子的导师，促进全面的方法和支持，以确保为患者的自主性提供最佳解决方案。在任何情况下，伦理立场都是必不可少的。在提醒关怀伦理观念之后，我们将通过在婴儿型脊髓性肌萎缩症患儿护理过程中的三个关键情况来解决各种伦理问题：诊断的公布、创新疗法信息的传递以及姑息治疗和临终关怀。 2020 年由法国儿科学会出版。版权所有，由 Elsevier Masson SAS 出版。