title: Ethical issues in states of impaired communication with intact consciousness and language.
abstract: Acute and chronic peripheral and/or central disorders of the voluntary motor system can produce profound paresis or paralysis, at times with ophthalmoplegia, while preserving consciousness and language function. Although at times appearing to be unconscious, these patients are awake and alert but unable to communicate, manipulate their environment, or participate in medical decision-making. Clinicians caring for these patients are ethically tasked with recognizing this clinical reality, enacting measures to facilitate communication, and abiding by ethical and legal principles that support autonomous patient-centered decision-making. This chapter reviews the various disorders that may cause this state while using three exemplary disorders - locked-in syndrome, caused by an anterior pontine lesion; high cervical spinal cord lesion; and amyotrophic lateral sclerosis - to discuss the management of these patients.
authors.affiliation: ALS Center, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. Electronic address: lfmcclusky@pahosp.com.
authors.forename: Leo
authors.initials: L
authors.lastname: McCluskey
mesh_terms: D000328:Adult; D002493:Central Nervous System Diseases / Q000150:complications* / Q000628:therapy; D003243:Consciousness; D006801:Humans; D007802:Language; D009462:Neurology / Q000941:ethics*; D010243:Paralysis; D028761:Withholding Treatment / Q000941:ethics*
keywords: amyotrophic lateral sclerosis; cervical myelopathy; communication (alternative and augmentative); locked-in syndrome; medical decision-making; pontine lesion(s); withdrawing medical intervention; withholding medical intervention