title: [Managing life and death wishes of invasively ventilated amyotrophic lateral sclerosis patients].
abstract: BACKGROUND
  Find of life decisions of patients with amyotrophic lateral sclerosis and respiratory failure are influenced by several environmental factors.
  
  
  METHODS
  We describe the course of disease and decision making of four of these patients.
  
  
  RESULTS
  Most decisions have been inconsistent and were seen to be depending on actual situations. Main factors were: 1. preclinically (before respiratory failure) medical information, 2. during respirator dependency in the hospital's intensive care unit the clinical setting and the individual perspective depending on the patient's private situation, 3. at home ventilation the family's situation and conflicts. Especially the patients requests for disconnection from the respirator overtaxed their carers capacities.
  
  
  CONCLUSIONS
  We conclude that there is need for professional psychosocial intervention for the patients and their families.
authors.affiliation: Neurologische Klinik, Friedrich-Alexander Universität Erlangen-Nürnberg.
authors.forename: M
authors.initials: M
authors.lastname: Winterholler
authors.forename: F
authors.initials: F
authors.lastname: Erbguth
authors.forename: T
authors.initials: T
authors.lastname: Rechlin
authors.forename: B
authors.initials: B
authors.lastname: Neundörfer
mesh_terms: D000328:Adult; D016223:Advance Directives / Q000523:psychology*; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology*; D001293:Attitude to Death; D017281:Cost of Illness; D003422:Critical Care / Q000523:psychology; D005260:Female; D006699:Home Care Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012121:Respiration, Artificial / Q000523:psychology*; D012131:Respiratory Insufficiency / Q000523:psychology*; D016312:Treatment Refusal / Q000523:psychology
vernacular_title: Der Umgang mit Lebens- und Todeswünschen bei invasiv beatmeten ALS-Patienten.