<oai_dc:dc xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:oai_dc="http://www.openarchives.org/OAI/2.0/oai_dc/" xmlns:xsi="http://www.w3.org/2001/XMLSchema-instance" xsi:schemaLocation="http://www.openarchives.org/OAI/2.0/oai_dc/ http://www.openarchives.org/OAI/2.0/oai_dc.xsd">
  <dc:creator>Stutzki R</dc:creator>
  <dc:creator>Schneider U</dc:creator>
  <dc:creator>Reiter-Theil S</dc:creator>
  <dc:creator>Weber M</dc:creator>
  <dc:date>2012</dc:date>
  <dc:description xmlns:ns0="xml" ns0:lang="en">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 &lt; 0.001). Suffering (p &lt; 0.026) and loneliness (p &lt; 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.</dc:description>
  <dc:format>application/pdf</dc:format>
  <dc:identifier>https://sonar.ch/global/documents/92817</dc:identifier>
  <dc:language>eng</dc:language>
  <dc:relation>info:eu-repo/semantics/altIdentifier/doi/10.3389/fpsyg.2012.00443</dc:relation>
  <dc:relation>info:eu-repo/semantics/altIdentifier/pmid/23112784</dc:relation>
  <dc:rights>info:eu-repo/semantics/openAccess</dc:rights>
  <dc:source>Frontiers in psychology. - 2012</dc:source>
  <dc:subject xmlns:ns1="xml" ns1:lang="en">ALS</dc:subject>
  <dc:subject xmlns:ns2="xml" ns2:lang="en">depression</dc:subject>
  <dc:subject xmlns:ns3="xml" ns3:lang="en">end of life</dc:subject>
  <dc:subject xmlns:ns4="xml" ns4:lang="en">motor neuron disease</dc:subject>
  <dc:subject xmlns:ns5="xml" ns5:lang="en">quality of life</dc:subject>
  <dc:title xmlns:ns6="xml" ns6:lang="en">Attitudes Toward Assisted Suicide and Life-Prolonging Measures in Swiss ALS Patients and Their Caregivers.</dc:title>
  <dc:type>http://purl.org/coar/resource_type/c_6501</dc:type>
</oai_dc:dc>