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.
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:
We extend our thanks to:
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 PromotingExcellence.org for more resources.