title: [The Current Status of End-of-Life Care in ALS: Progress and Personal Experience from the Past Ten Years in the USA].
abstract: End-of-life (EOL) care and management in ALS is one of the least studied subjects within ALS management. In early 2000, Robert Wood Johnson and the ALS Association assembled an advisory committee to develop recommendations for the promotion of excellence during EOL care. We have reviewed this 10-year-old publication1)and describe the progress we have made in 16 different areas of EOL recommendations. Although there are some areas with little progress over the past 10 years, a few areas, particularly those regarding psychosocial management, symptomatic treatments, and ethical issues of EOL, have made major advancements during this time. the statements and recommendations for promoting excellence in EOL made 10 years ago appear to still be valid. We also review hastening death, a newly recognized issue of EOL, and discuss the potential reasons why Japanese and American patients chose tracheostomy-invasive ventilator at different rates. We conclude that EOL management is still evolving and in progress. Until we have a cure for ALS, every effort is being made to improve EOL care for patients with ALS.
authors.affiliation: Eleanor and Lou Gehrig MDA/ALS Research Center, Columbia University Medical Center.
authors.forename: Hiroshi
authors.initials: H
authors.lastname: Mitsumoto
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000191:economics / Q000628:therapy*; D006801:Humans; D010166:Palliative Care; D013727:Terminal Care / Q000191:economics; D014481:United States