���Executive Summary ���Report to the Field ���Appendices |
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:
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Acknowledgements
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
