Advance Directives of German People with Parkinson's Disease Are Unspecific in regard to Typical Complications.
Journal
Parkinson's disease
ISSN: 2090-8083
Titre abrégé: Parkinsons Dis
Pays: United States
ID NLM: 101539877
Informations de publication
Date de publication:
2019
2019
Historique:
received:
05
06
2019
accepted:
16
07
2019
entrez:
5
9
2019
pubmed:
5
9
2019
medline:
5
9
2019
Statut:
epublish
Résumé
Parkinson's disease (PD) is a progressive neurodegenerative movement disorder with an increased morbidity and mortality. People with PD (PwP) may suffer from decreased quality of life due to various motor and nonmotor symptoms. To a huge proportion, PwP have written an advance directive (AD); however, the content of these forms in regard to PD-specific complications is unclear. The aim of this study was to qualitatively and quantitatively analyze ADs of PwP in Germany. ADs of PwP were analyzed in a German sample of members of the German PD patient association. Participants completed a questionnaire about their AD and sent a copy of their AD to the study center for detailed analyses. ADs were qualitatively and quantitatively analyzed for general and PD-specific aspects and usefulness concerning treatment decisions. 82 PwP were included in the study, and in 76, an AD could be analyzed. Family members, notaries, lawyers, and general physicians mainly counseled writing of the ADs. 4 PwP consulted a neurologist to establish a specific AD for PD. In the analysis, ADs displayed a good specificity for general aspects, but they were unspecific to PD in the vast majority of cases. PwP should be encouraged to create an AD early in their disease and adapt it in the course of the disease. PD-specific aspects for an AD could be details in relation to dopaminergic therapies at the end of life, management of non-oral advanced therapies, neuropsychiatric symptoms, dementia, and swallowing disturbances.
Identifiants
pubmed: 31482006
doi: 10.1155/2019/2107821
pmc: PMC6701430
doi:
Types de publication
Journal Article
Langues
eng
Pagination
2107821Déclaration de conflit d'intérêts
The authors have no conflicts of interest to report.
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