This article is part of the Research Topic Psychological issues in Amyotrophic lateral sclerosis

Original Research ARTICLE

Front. Psychol., 25 October 2012 | doi: 10.3389/fpsyg.2012.00443

Attitudes toward assisted suicide and life-prolonging measures in Swiss ALS patients and their caregivers

Ralf Stutzki1*, Ursula Schneider2, Stella Reiter-Theil1 and Markus Weber2
  • 1Clinical Ethics Support and Accompanying Research, University Hospital Basel/Psychiatric University Hospitals Basel, Institut für Bio- und Medizin Ethik, University of Basel, Basel, Switzerland
  • 2Muskelzentrum/ALS Clinic, Kantonsspital St. Gallen, St. Gallen, Switzerland

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.

Keywords: ALS, motor neuron disease, quality of life, depression, end of life

Citation: Stutzki R, Schneider U, Reiter-Theil S and Weber M (2012) Attitudes toward assisted suicide and life-prolonging measures in Swiss ALS patients and their caregivers. Front. Psychology 3:443. doi: 10.3389/fpsyg.2012.00443

Received: 11 July 2012; Accepted: 04 October 2012;
Published online: 25 October 2012.

Edited by:

Francesco Pagnini, Catholic University of Milan, Italy

Reviewed by:

Gian Mauro Manzoni, Istituto Auxologico Italiano IRCCS, Italy
Francesco Pagnini, Catholic University of Milan, Italy

Copyright: © 2012 Stutzki, Schneider, Reiter-Theil and Weber. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in other forums, provided the original authors and source are credited and subject to any copyright notices concerning any third-party graphics etc.

*Correspondence: Ralf Stutzki, Clinical Ethics Support and Accompanying Research, Universitäre Psychiatrische Kliniken, Schanzenstrasse 13, 4056 Basel, Switzerland. e-mail: ralf.stutzki@unibas.ch

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