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Palliative care in amyotrophic lateral sclerosis: a review of current international guidelines and initiatives
  1. Peter Bede1,
  2. David Oliver2,3,
  3. James Stodart4,
  4. Leonard van den Berg5,
  5. Zachary Simmons6,
  6. Doiminic Ó Brannagáin7,8,
  7. Gian Domenico Borasio9,10,
  8. Orla Hardiman1,11
  1. 1Trinity College, Dublin, Ireland
  2. 2Wisdom Hospice, Rochester, UK
  3. 3Centre for Professional Practice, University of Kent, Canterbury, UK
  4. 4Wesley Hospital, Brisbane, Queensland, Australia
  5. 5Department of Neurology, University Medical Centre Utrecht, Heidelberglaan, Utrecht, The Netherlands
  6. 6Penn State Hershey Medical Center, Department of Neurology, Hershey, Philadelphia, USA
  7. 7Royal College of Surgeons in Ireland, Dublin, UK
  8. 8Dochas Centre, Our Lady of Lourdes Hospital, Drogheda, Co Louth, Ireland
  9. 9Interdisciplinary Centre for Palliative Medicine, Munich University Hospital, Munich, Germany
  10. 10Department of Neurology, University of Munich, Munich, Germany
  11. 11National Neuroscience Centre, Beaumont Hospital, Dublin, Ireland
  1. Correspondence to Dr P Bede, Smurfit Building, Clinical Research Centre, Beaumont Hospital, Dublin 9, Dublin, Ireland; bedepeter{at}hotmail.com

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.

  • ALS
  • behavioural disorder
  • cognition
  • motor neuron disease
  • systematic reviews

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Footnotes

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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