title: Withdrawal of invasive home mechanical ventilation in patients with advanced amyotrophic lateral sclerosis: ten years of Danish experience.
abstract: BACKGROUND
  Due to the growing use of home mechanical ventilation in amyotrophic lateral sclerosis (ALS), physicians are increasingly confronted with patients seeking discontinuation of therapy. Yet there are few systematic investigations of the withdrawal of invasive home mechanical ventilation (IHMV). This article aims to describe the medical and patient-related aspects of terminating IHMV in patients with advanced stage ALS.
  
  
  METHODS
  A retrospective, descriptive study was made of all ALS patients cared for at our center from 2002 to 2009 who decided to withdraw their consent for IHMV.
  
  
  RESULTS
  All 12 ALS patients (4 females) received continuous IHMV. They had a median age of 61 years (range, 39-69 years). In all cases advance directives for end of life care, particularly concerning withdrawal of treatment, were discussed before the initiation of IHMV. The median time from initiation of IHMV to the decision to terminate treatment was 22 months (range, 1-35 months). The reasons for requests were for all patients a general loss of "meaning in life." Deep sedation was achieved with high dose morphine and diazepam before disconnecting the ventilator.
  
  
  CONCLUSIONS
  Patients' requests for the withdrawal of IHMV in advanced stage ALS was related to a perceived "loss of meaning in life." Termination of treatment was performed under deep sedation as a medically, legally, and ethically justified procedure.
authors.affiliation: Department of Anaesthesiology and Intensive Care, Aarhus University Hospital, Aarhus, Denmark. piadreye@rm.dk
authors.forename: Pia Sander
authors.initials: PS
authors.lastname: Dreyer
authors.forename: Michael
authors.initials: M
authors.lastname: Felding
authors.forename: Charlotte Sønderskov
authors.initials: CS
authors.lastname: Klitnæs
authors.forename: Charlotte Kirkegård
authors.initials: CK
authors.lastname: Lorenzen
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000628:therapy*; D003657:Decision Making / Q000941:ethics; D054810:Deep Sedation; D003718:Denmark; D005260:Female; D006699:Home Care Services / Q000941:ethics; D006801:Humans; D008020:Life Support Care / Q000941:ethics; D008297:Male; D008875:Middle Aged; D011782:Quadriplegia / Q000628:therapy*; D012121:Respiration, Artificial / Q000941:ethics; D012189:Retrospective Studies; D028761:Withholding Treatment / Q000941:ethics