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Attitudes Toward Assisted Suicide and Life-Prolonging Measures in Swiss ALS Patients and Their Caregivers

Stutzki, Ralf and Schneider, Ursula and Reiter-Theil, Stella and Weber, Markus. (2012) Attitudes Toward Assisted Suicide and Life-Prolonging Measures in Swiss ALS Patients and Their Caregivers. Frontiers in psychology, Vol. 3 , 443.

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Official URL: http://edoc.unibas.ch/dok/A6070742

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Abstract

Objectives: In Switzerland, assisted suicide (AS) is legal, provided that the person seeking assistance has decisional capacity and the person assisting is not motivated by reasons of self-interest. However, in this particular setting nothing is known about patients' and their caregivers' attitudes toward AS and life-prolonging measures. Methods: Data was retrieved through validated questionnaires and personal interviews in 33 patients and their caregivers covering the following domains: physical function according to the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R), demographic data, quality of life, anxiety, depression, social situation, spirituality, burden of disease, life-prolonging, and life-shortening acts. Results: In patients the median time after diagnosis was 9 months (2-90) and the median Amyotrophic Lateral Sclerosis (ALS) FRS-R score was 37 (22-48). The majority of patients (94%; n = 31) had no desire to hasten death. Patients' and caregivers' attitudes toward Percutaneous Endoscopic Gastrostomy (PEG) and Non-Invasive Ventilation (NIV) differed. Significantly more patients than caregivers (21.2 versus 3.1%) stated that they were against NIV (p = 0.049) and against PEG (27.3 versus 3.1%; p = 0.031). Answers regarding tracheotomy were not significantly different (p = 0.139). Caregivers scored significantly higher levels of "suffering" (p = 0.007), "loneliness" (p = 0.006), and "emotional distress" answering the questionnaires (p > 0.001). Suffering (p > 0.026) and loneliness (p > 0.016) were related to the score of the Hospital Anxiety and Depression Scale (HADS) in patients. Conclusion: A liberal legal setting does not necessarily promote the wish for AS. However, the desire to discuss AS is prevalent in ALS patients. There is a higher level of suffering and loneliness on the caregivers' side. A longitudinal study is warranted.
Faculties and Departments:08 Cross-disciplinary Subjects > Ethik > Institut für Bio- und Medizinethik > Bio- und Medizinethik (Elger)
03 Faculty of Medicine > Departement Public Health > Ethik in der Medizin > Bio- und Medizinethik (Elger)
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:Frontiers Research Foundation
Note:Publication type according to Uni Basel Research Database: Journal article
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Last Modified:04 Sep 2015 14:31
Deposited On:26 Apr 2013 07:01

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