Palliative care in amyotrophic lateral sclerosis: A review of current international guidelines and initiatives

Peter Bede, David Oliver, James Stodart, Leonard Van Den Berg, Zachary Simmons, Doiminic Ó Brannagáin, Gian Domenico Borasio, Orla Hardiman

Research output: Contribution to journalArticlepeer-review

63 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)413-418
Number of pages6
JournalJournal of Neurology, Neurosurgery and Psychiatry
Volume82
Issue number4
DOIs
StatePublished - Apr 2011

All Science Journal Classification (ASJC) codes

  • Surgery
  • Clinical Neurology
  • Psychiatry and Mental health

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