title: Attitudes Toward Assisted Suicide and Life-Prolonging Measures in Swiss ALS Patients and Their Caregivers.
abstract: OBJECTIVE
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Clinical Ethics Support and Accompanying Research, University Hospital Basel/Psychiatric University Hospitals Basel, Institut für Bio- und Medizin Ethik, University of Basel Basel, Switzerland.
authors.forename: Ralf
authors.initials: R
authors.lastname: Stutzki
authors.forename: Ursula
authors.initials: U
authors.lastname: Schneider
authors.forename: Stella
authors.initials: S
authors.lastname: Reiter-Theil
authors.forename: Markus
authors.initials: M
authors.lastname: Weber
keywords: ALS; depression; end of life; motor neuron disease; quality of life