DEATH BY VOLUNTARY CESSATION OF THERAPY BY NON-TERMINALLY ILL CYSTIC FIBROSIS PATIENTS - INTERNATIONAL SURVEY OF CLINICIANS

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Version: After imprimatur
Serval ID
serval:BIB_714F9A30D5B1
Type
A Master's thesis.
Publication sub-type
Master (thesis) (master)
Collection
Publications
Institution
Title
DEATH BY VOLUNTARY CESSATION OF THERAPY BY NON-TERMINALLY ILL CYSTIC FIBROSIS PATIENTS - INTERNATIONAL SURVEY OF CLINICIANS
Author(s)
PISATURO M.
Director(s)
HAFEN G.
Institution details
Université de Lausanne, Faculté de biologie et médecine
Publication state
Accepted
Issued date
2014
Language
english
Number of pages
25
Abstract
Background: Little is known about non-terminally ill cystic fibrosis (CF) patients who die by voluntary cessation of therapy. The current study was undertaken to provide an international snapshot of this problem. Methods: An online survey was distributed to the medical directors of the CF Centres affiliated with the US Cystic Fibrosis Foundation and Cystic Fibrosis Australia (with the inclusion of New Zealand); the same letter was sent to every clinician member of the European Cystic Fibrosis Society.
Results: More than 200 patients were reported as being in the situation described above. Data analysis was eligible in 102 patients (4 children, 25 adolescents and 73 adults). 92% were capable of judgement. Time-consuming and low immediate-impact therapies, such as respiratory physiotherapy, were most frequently discontinued first. Resignation was the main reported reason, followed by reactive depression and lack of familial support. 69% received palliative care and 72% died in the six months following refusal.
Conclusions: Death of non-terminally ill CF patients due to voluntary cessation of therapy exists. This challenging situation should be discussed in multi-disciplinary teams so that the most appropriate attitude, suited to the individual situation, is defined.
Keywords
voluntary, cessation, stop, therapy, cystic fibrosis
Create date
03/09/2015 9:18
Last modification date
20/08/2019 14:29
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