title: Long-term care, rehabilitation, and legal and ethical considerations in the management of neuromuscular disease with respiratory dysfunction.
abstract: Neuromuscular disease, while for the most part progressive, allows for ample time to discuss options for long-term care. Frank discussions among clinicians, the patient, and family will allow for an ethical decision process. With the clinician's awareness of the inherent difficulties in judging life satisfaction, an early discussion of first noninvasive measures, then tracheostomy with positive pressure ventilation, will allow for a rational, moral, and continuing treatment plan. The early introduction of rehabilitation techniques should allow for maximal time in the home setting where life satisfaction may be enhanced. As the disease progresses, the issues such as ventilator withdrawal or even the decision not to initiate invasive ventilation need to be addressed. The better our understanding, through continuing study of NMD, of the instances when the use of continued technology will enhance life, will support ethical discussions, guide clinicians and patients, and help shape a national health-care agenda.
authors.affiliation: Department of Medicine, Tufts University School of Medicine, Boston, Massachusetts.
authors.forename: L S
authors.initials: LS
authors.lastname: Hotes
authors.forename: J A
authors.initials: JA
authors.lastname: Johnson
authors.forename: L
authors.initials: L
authors.lastname: Sicilian
mesh_terms: D004992:Ethics, Medical; D006699:Home Care Services; D006801:Humans; D007258:Informed Consent; D008134:Long-Term Care / Q000331:legislation & jurisprudence / Q000379:methods; D009468:Neuromuscular Diseases / Q000150:complications / Q000534:rehabilitation*; D010344:Patient Advocacy; D040841:Resource Allocation; D012121:Respiration, Artificial; D012131:Respiratory Insufficiency / Q000209:etiology / Q000628:therapy*; D016312:Treatment Refusal; D028761:Withholding Treatment