Amyotrophic Lateral Sclerosis Workgroup

Mission Statement: To catalyze rapid change, resulting in improvement in the care of patients dying of ALS, and their families.

Amyotrophic Lateral Sclerosis (ALS) is a progressive, incurable neuromuscular disease that affects about 4,600 newly diagnosed people in the United States each year, who live an average of three to five years after diagnosis.

The ALS Workgroup worked to identify key factors necessary to improve palliative care for ALS patients and their families from May 2000 - August 2002. Chaired by Hiroshi Mitsumoto, MD, at the Columbia University Neurologic Institute in New York and managed by the ALS Association (www.alsa.org) in California, this workgroup consisted of 22 members including neurologists, nurses, palliative care specialists and social workers. To accomplish its goals, the workgroup divided into four subcommittees:

• Communication, ethics, and decision-making
• Bereavement, spirituality, caregiving, quality of life, and psycho-social issues
• Physical symptoms that include respiratory, nutrition and hydration, pain, communication, mental status and sleep disturbances
• Policy, access to care and funding for end-of-life care

The ALS Workgroup, which had its final meeting in November 2001, completed a Recommendations to the Field summary (see below) in August 2002 for policymakers, caregivers, physicians and others working to improve the lives of ALS patients and families.

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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.