| John Bach
Weakness of the muscles that control or influence breathing or swallowing is by far the most serious problem in ALS and requires decisions about whether and how to prolong life.
A study in the July issue of the journal Chest says that noninvasive ventilation (mechanical ventilation without a tracheostomy, an incision into the trachea), along with mechanically assisted coughing as needed, can permit prolonged survival and delay the need for a tracheostomy for a significant number of ALS patients by more than a year.
Study author John Bach, a physical medicine and rehabilitation specialist who co-directs the MDA clinic at the University of Medicine & Dentistry of New Jersey in Newark, says that methods of ventilating those with ALS without resorting to tracheostomy may have failed in some cases because of the approach used.
A better approach
Bach's data show that 36 out of 166 ALS patients referred to his clinic — some 22 percent — were able to use continuous, noninvasive, positive-pressure ventilation with mechanically assisted coughing (for example, a CoughAssist) to prolong survival by at least 14 to 17 months and in some cases for several years.
Bach says key aspects of his respiratory treatment plan include:
- not limiting noninvasive ventilation to the nighttime hours but using it as necessary, up to 24 hours a day
- using mechanically assisted coughing as needed
- taking extreme care in the choice of user interfaces with the ventilator, employing mouthpieces, nosepieces and/or masks, and avoiding skin pressure
- tailoring treatment to key respiratory measures, especially "peak cough flow," the maximum air flow that can be generated while coughing, and oxygen saturation, a measure of blood oxygen; and monitoring these frequently
- avoiding (almost always) the use of supplemental oxygen
- offering nasal ventilation during the night and mouthpiece ventilation, which permits the user to take deep breaths as needed by grabbing the mouthpiece, during the day.
In his article, Bach says that most ALS patients will eventually require tracheostomy ventilation for long-term survival. However, he notes, using noninvasive ventilation first has many advantages. It allows the patient and family time to decide about tracheostomy ventilation, which is more costly, generally more troublesome and uncomfortable, and often difficult to discontinue.
For information about the UMDNJ's noninvasive ventilation program, see www.theuniversityhospital.com/ventilation.
The journal Neurology, online at www.neurology.org, has started a new feature for nonprofessional readers. From the home page, click on "Patients" to see a selection of free, readable articles.