title: Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives.
abstract: BACKGROUND
  Amyotrophic lateral sclerosis (ALS) is a relentlessly progressive neurodegenerative condition. Optimal management requires a palliative approach from diagnosis with emphasis on patient autonomy, dignity and quality of life.
  
  
  OBJECTIVE
  To conduct a systematic analysis of the type, level and timing of specialist palliative care intervention in ALS.
  
  
  RESULTS
  Despite an international consensus that ALS management should adopt a multidisciplinary approach, integration of palliative care into ALS management varies considerably across health care systems. Late referral to palliative services in ALS is not uncommon and may impact negatively on the quality of life of ALS patients and their caregivers. However, common themes and principles of engagement can be identified across different jurisdictions, and measurement systems have been established that can assess the impact of palliative care intervention.
  
  
  CONCLUSIONS
  There is considerable evidence that palliative care intervention improves quality of life in patients and carers. International consensus guidelines would assist in the development of a framework for active palliative care engagement in ALS and other neurodegenerative diseases.
authors.affiliation: Trinity College, Dublin, Ireland.
authors.forename: Peter
authors.initials: P
authors.lastname: Bede
authors.forename: David
authors.initials: D
authors.lastname: Oliver
authors.forename: James
authors.initials: J
authors.lastname: Stodart
authors.forename: Leonard
authors.initials: L
authors.lastname: van den Berg
authors.forename: Zachary
authors.initials: Z
authors.lastname: Simmons
authors.forename: Doiminic
authors.initials: D
authors.lastname: Ó Brannagáin
authors.forename: Gian Domenico
authors.initials: GD
authors.lastname: Borasio
authors.forename: Orla
authors.initials: O
authors.lastname: Hardiman