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Abstract
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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%; nD31) 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 D0.049) and against PEG (27.3 versus 3.1%; p D0.031). Answers regarding tracheotomy were not significantly different (p D0.139). Caregivers scored significantly higher levels of "suffering" (p D0.007), "loneliness" (p D0.006), 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.
Language: en |