Promoting Excellence : Completing the Continuum of ALS Care

���Executive Summary
���Report to the Field

Person being helped up from a wheelchair illustration.

Completing the Continuum of ALS Care: A Consensus Document

Recommendations to the Field

Evidence-based practice parameters in amyotrophic lateral sclerosis (ALS) provide clear management direction on caring for patients during disease progression. However, management direction is also needed specifically for end-of-life care for patients with ALS. Little evidence is available in the published literature identifying optimal management approaches for the dying patient with ALS. Therapeutic direction has been adapted from pain management and other disease states, such as cancer.

Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation (RWJF) charged with the task of improving the end of life for dying patients. The Promoting Excellence program office recognized ALS as a disease that requires special attention at the end of life. Working with The ALS Association (ALSA), an ALS Peer Workgroup was established with the charge of identifying the current state of end-of-life care for ALS patients and establishing recommendations on how to improve the end of life for patients and their families.

The Executive Summary and Report to the Field are available in the following formats:
  1. HTML version, for those wishing to view the content online (see navigation links at left).
  2. PDF version, which provides a convenient downloadable and printable format, is also available. (Viewing PDF files requires downloading and installation of the free Adobe Acrobat Reader.)
    PDF icon 1,553 KB / 44 pages


This publication was produced by Promoting Excellence in End-of-Life Care, a national program of The Robert Wood Johnson Foundation, directed by Ira Byock, M.D. Primary authors of this report are:

  • Hiroshi Mitsumoto, M.D., D.Med.Sc., ALS Peer Workgroup Chair, and
  • The ALS Peer Workgroup Members.

We extend our thanks to:

  • The ALS Association for managing the Workgroup, under the direction of Mary Lyon;
  • Lisa Bardach, for her contributions to the report;
  • Barbara L. Massey for assistance with the copyrights;
  • Julie Emnett for organizing Workgroup meetings and facilitating group process;
  • Starr Pearlman for assisting the Workgroup in writing the report and initial editing;
  • Nancy Nelson for assistance editing the report; and
  • Blair Pfister, Keila Szpaller and Karyn Collins of the Promoting Excellence staff for copy-editing.

Illustrations by Neal Wiegert, The University of Montana Printing & Graphics Services

Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit for more resources.

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