Journal article

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

  • Stutzki R Clinical Ethics Support and Accompanying Research, University Hospital Basel/Psychiatric University Hospitals Basel, Institut für Bio- und Medizin Ethik, University of Basel Basel, Switzerland.
  • Schneider U
  • Reiter-Theil S
  • Weber M
  • 2012-11-01
Published in:
  • Frontiers in psychology. - 2012
English 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.
Language
  • English
Open access status
gold
Identifiers
Persistent URL
https://sonar.ch/global/documents/92817
Statistics

Document views: 58 File downloads:
  • Full-text: 0