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Threats to 'informed' advance directives for the severely physically challenged ?
BACH JR
ARCH PHYS MED REHABIL , 2003, vol. 84, n° SUPPL. 2, p. S23-S28 Doc n°: 108377 Localisation : Documentation IRR Descripteurs : AE6 - MALADIES DEGENERATIVES - MOELLE
Article consultable sur : http://www.archives-pmr.org
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. Failure to use noninvasive aids almost invariably results in respiratory failure, intubation, and tracheostomy or death. When noninvasive aids are available, invasive measures referred to in advance directives (eg, intubation) are often needed only temporarily. Yet, ill-informed patients are often advised to refuse intubation and die or to be intubated and left to decide whether to undergo tracheostomy for long-term ventilatory support. Further, despite severe disability, ventilator users with neuromuscular disease report normal life satisfaction. Langue : ANGLAIS Identifiant basis : 2003226468 |
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