title: Decisional Capacity in Amyotrophic Lateral Sclerosis.
abstract: The cognitive and behavioral changes that can be observed in the neurodegenerative terminal disease amyotrophic lateral sclerosis (ALS), once characterized as purely a motor neuron disease, have become increasingly recognized over the past century. Detecting cognitive deficits earlier and identifying continued changes at regular intervals can lead to improved care, proactive treatments, and earlier discussions about end-of-life wishes. Although medical decisional capacity is required for every treatment decision made, its importance becomes paramount when making decisions on complex medical treatments that will invariably and significantly affect quality of life or life itself. In this review, we conducted a critical analysis of the evidence-based literature on the cognitive and behavioral impairments in ALS that can compromise medical decisional capacity. We review specific ALS-related clinical scenarios in which decisional capacity is of utmost importance and discuss a practical framework for cognitive and behavioral assessment that can be routinely and efficiently used, while being mindful of the confounding factors associated with ALS. Finally, we review models for preserving patient choices that can be used in patients with ALS to help safeguard autonomy and retain dignity toward the end of life.
authors.affiliation: Dr. Khin Khin is Assistant Professor of Psychiatry, Director of Forensic Psychiatry Services and Associate Director of Residency Training Program, Department of Psychiatry and Behavioral Sciences, George Washington University School of Medicine and Health Sciences. Drs. Minor and Holloway are psychiatry residents at George Washington University School of Medicine and Health Sciences, Washington, DC. Dr. Pelleg is a primary care internal medicine resident at John H. Stroger, Jr. Hospital of Cook County, Chicago, IL. khinkhin@gwmail.gwu.edu.
authors.forename: Eindra
authors.initials: E
authors.lastname: Khin Khin
authors.affiliation: Dr. Khin Khin is Assistant Professor of Psychiatry, Director of Forensic Psychiatry Services and Associate Director of Residency Training Program, Department of Psychiatry and Behavioral Sciences, George Washington University School of Medicine and Health Sciences. Drs. Minor and Holloway are psychiatry residents at George Washington University School of Medicine and Health Sciences, Washington, DC. Dr. Pelleg is a primary care internal medicine resident at John H. Stroger, Jr. Hospital of Cook County, Chicago, IL.
authors.forename: Darlinda
authors.initials: D
authors.lastname: Minor
authors.affiliation: Dr. Khin Khin is Assistant Professor of Psychiatry, Director of Forensic Psychiatry Services and Associate Director of Residency Training Program, Department of Psychiatry and Behavioral Sciences, George Washington University School of Medicine and Health Sciences. Drs. Minor and Holloway are psychiatry residents at George Washington University School of Medicine and Health Sciences, Washington, DC. Dr. Pelleg is a primary care internal medicine resident at John H. Stroger, Jr. Hospital of Cook County, Chicago, IL.
authors.forename: Amanda
authors.initials: A
authors.lastname: Holloway
authors.affiliation: Dr. Khin Khin is Assistant Professor of Psychiatry, Director of Forensic Psychiatry Services and Associate Director of Residency Training Program, Department of Psychiatry and Behavioral Sciences, George Washington University School of Medicine and Health Sciences. Drs. Minor and Holloway are psychiatry residents at George Washington University School of Medicine and Health Sciences, Washington, DC. Dr. Pelleg is a primary care internal medicine resident at John H. Stroger, Jr. Hospital of Cook County, Chicago, IL.
authors.forename: Ayla
authors.initials: A
authors.lastname: Pelleg
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis* / Q000523:psychology*; D000067289:Behavior Observation Techniques; D003072:Cognition Disorders / Q000175:diagnosis / Q000523:psychology; D003657:Decision Making; D006801:Humans; D016743:Mental Competency / Q000331:legislation & jurisprudence*; D001523:Mental Disorders / Q000175:diagnosis / Q000523:psychology; D019726:Patient Self-Determination Act; D014481:United States