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


Journal

Archives de pediatrie : organe officiel de la Societe francaise de pediatrie
ISSN: 1769-664X
Titre abrégé: Arch Pediatr
Pays: France
ID NLM: 9421356

Informations de publication

Date de publication:
Dec 2020
Historique:
entrez: 28 12 2020
pubmed: 29 12 2020
medline: 14 9 2021
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 33357599
pii: S0929-693X(20)30278-5
doi: 10.1016/S0929-693X(20)30278-5
pii:
doi:

Types de publication

Journal Article Review

Langues

eng

Sous-ensembles de citation

IM

Pagination

7S50-7S53

Informations de copyright

Copyright © 2020 French Society of Pediatrics. Published by Elsevier Masson SAS. All rights reserved.

Auteurs

B Chabrol (B)

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. Electronic address: bchabrol@ap-hm.fr.

I Desguerre (I)

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.

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Classifications MeSH