Care of the chronic tracheostomy.

A minority of patients with neuromuscular disease require placement of a tracheostomy, usually for the purpose of providing mechanical ventilation. Often the tracheostomy is performed during a hospital admission for an acute illness. The debate about the appropriate timing of tracheostomy in critically ill patients has not been resolved; however, the weight of evidence now favors performing a tracheostomy early (within 7 d of translaryngeal intubation) if the period of mechanical ventilation is likely to be prolonged beyond 3 weeks. For patients with chronic progressive weakness who develop respiratory difficulty, the consensus of opinion is that tracheostomy should be performed in patients with severe bulbar involvement, inability to effectively cough up secretions despite mechanical aids for secretion clearance, or for those who are unable to tolerate or fail noninvasive ventilation. The decision to perform tracheostomy in patients with chronic neuromuscular weakness involves consideration of several factors, including complications, resources, quality of life, ethical issues, cosmetic issues, and cost. Complications from tracheostomy and physician-perceived poor quality of life often lead to a negative bias, such that some patients may be denied this life-saving procedure. Special training is needed to provide long-term tracheostomy care, and an organized approach should be followed to decannulate patients who recover from their acute illness. Appropriate and skilled care could significantly improve the longevity and quality of life of those patients with neuromuscular disease who have a tracheostomy for long-term ventilation.