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Attitudes towards hastened death in ALS : a prospective study of patients and family caregivers

Stutzki, Ralf and Weber, Markus and Reiter-Theil, Stella and Simmen, Urs and Borasio, Gian Domenico and Jox, Ralf J.. (2014) Attitudes towards hastened death in ALS : a prospective study of patients and family caregivers. Amyotrophic lateral sclerosis & frontotemporal degeneration, Vol. 15, H. 1-2. pp. 68-76.

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Official URL: http://edoc.unibas.ch/dok/A6271901

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Abstract

Amyotrophic lateral sclerosis (ALS) may be associated with the wish to hasten death (WTHD). We aimed to determine the prevalence and stability of WTHD and end-of-life attitudes in ALS patients, identify predictive factors, and explore communication about WTHD. We conducted a prospective questionnaire study among patients and their primary caregivers attending ALS clinics in Germany and Switzerland. We enrolled 66 patients and 62 caregivers. Half of the patients could imagine asking for assisted suicide or euthanasia; 14% expressed a current WTHD at the baseline survey. While 75% were in favour of non-invasive ventilation, only 55% and 27% were in favour of percutaneous endoscopic gastrostomy and invasive ventilation, respectively. These attitudes were stable over 13 months. The WTHD was predicted by depression, anxiety, loneliness, perceiving to be a burden to others, and a low quality of life (all p > 0.05). Lower religiosity predicted whether patients could imagine assisted suicide or euthanasia. Two-thirds of patients had communicated their WTHD to relatives; no-one talked to the physician about it, yet half of them would like to do so. In conclusion, physicians should consider proactively asking for WTHD, and be sensitive towards neglected psychosocial problems and psychiatric comorbidity.
Faculties and Departments:03 Faculty of Medicine > Departement Public Health > Ehemalige Einheiten Public Health > Medizin- und Gesundheitsethik (Reiter-Theil)
UniBasel Contributors:Reiter-Theil, Stella and Stutzki, Ralf
Item Type:Article, refereed
Article Subtype:Research Article
Bibsysno:Link to catalogue
Publisher:Taylor & Francis
ISSN:2167-8421
Note:Publication type according to Uni Basel Research Database: Journal article
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Last Modified:18 Jul 2014 09:10
Deposited On:18 Jul 2014 09:10

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