Death after cessation of treatment by cystic fibrosis patients: An international survey of clinicians.

Détails

ID Serval
serval:BIB_B54DC37E474C
Type
Article: article d'un périodique ou d'un magazine.
Collection
Publications
Titre
Death after cessation of treatment by cystic fibrosis patients: An international survey of clinicians.
Périodique
Palliative medicine
Auteur(s)
Pisaturo M., Deppen A., Rochat I., Robinson W.M., Hafen G.M.
ISSN
1477-030X (Electronic)
ISSN-L
0269-2163
Statut éditorial
Publié
Date de publication
01/2017
Peer-reviewed
Oui
Volume
31
Numéro
1
Pages
82-88
Langue
anglais
Notes
Publication types: Journal Article
Publication Status: ppublish
Résumé
Little is known about cystic fibrosis patients, who are not considered to be terminally ill, and who die after voluntary cessation of treatment.
This study was undertaken to provide an international snapshot of this issue.
An online survey was distributed across three continents.
Distribution to the medical directors of the cystic fibrosis centres affiliated with the US Cystic Fibrosis Foundation, Cystic Fibrosis Australia (inclusion of New Zealand) and to every clinician member of the European Cystic Fibrosis Society.
More than 200 cystic fibrosis patients not considered to be terminally ill and, who voluntarily ceased treatment, were reported by the clinicians surveyed. Detailed data were reported in 102 patients (4 children, 25 adolescents and 73 adults). Only one child, six adolescents and one adult were judged by clinicians not to be competent to make the decision to stop treatment. Time-consuming and low immediate-impact therapies, such as respiratory physiotherapy, were most frequently discontinued. Resignation was the main reported reason for discontinuing treatment, followed by reactive depression and lack of familial support. A total of 69% of the patients received palliative care and 72% died in the 6 months following cessation of treatment.
Death of cystic fibrosis patients, not considered to be terminally ill, is reported in Europe, the United States and Australia due to voluntary cessation of treatment.

Mots-clé
Adolescent, Adult, Australia, Child, Cystic Fibrosis/mortality, Cystic Fibrosis/therapy, Europe, Female, Health Care Surveys, Health Services Research, Humans, Male, Patient Dropouts, United States, Young Adult, Voluntary, cessation, cystic fibrosis patient, death, international survey, stop, therapy, treatment
Pubmed
Web of science
Création de la notice
17/03/2016 18:23
Dernière modification de la notice
03/03/2018 20:43
Données d'usage