Archives of physical medicine and rehabilitation
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Arch Phys Med Rehabil · Apr 2003
ReviewThreats to "informed" advance directives for the severely physically challenged?
The neuromuscular diseases, such as infantile spinal muscular atrophy, Duchenne's muscular dystrophy, and amyotrophic lateral sclerosis, are widely considered to be terminal illnesses. However, as with many neuromuscular and neurologic diseases, morbidity and mortality are caused by dysfunction of inspiratory, expiratory, and bulbar musculature. This article will discuss how inspiratory and expiratory musculature can be supported by simple, noninvasive means that are rarely considered when, as with the general population, individuals with disabilities are counseled about advance directives. ⋯ Further, despite severe disability, ventilator users with neuromuscular disease report normal life satisfaction. Health care professionals, on the other hand, tend to ignore the patient's life satisfaction and consider quality of life measures not designed for the disabled to justify withholding life-saving interventions. Advance directives, although sometimes appropriate for patients with irretractable pain and advanced cancer, are inappropriate for patients with severe disability because of muscle weakness, and virtually no patients are appropriately counseled about all therapeutic options.
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Arch Phys Med Rehabil · Apr 2003
Comparative StudyOral motor, communication, and nutritional status of children during intrathecal baclofen therapy: a descriptive pilot study.
To describe the oral motor, communication, and nutritional status of children receiving intrathecal baclofen (ITB) therapy for spasticity of cerebral origin. ⋯ Some aspects of speech, communication, and saliva control seemed to have improved, with bowel movement frequency decreased in some children receiving ITB. Fewer changes in feeding and nutritional status were reported. On the basis of this pilot study, prospective management guidelines are proposed that relate objective outcome measures of oral motor function, communication, and nutrition to changes in spasticity with ITB.