Do You Need a Cough Assist?
I was asked to comment on an RT's "cheat sheet" for why all PALS should use a Cough Assist device. Following are some excerpts from the RT's handout and my responses. My first comment was that failing to list contraindications and risks makes it a fail from the jump, but wait, there's more:
"The goal of the Inspiratory Pressure is to expand the lungs, which can correct the closing of the air sacs (alveoli). This may be utilized without the expiratory pressure when feeling short of breath."
Expanding the lungs doesn't "correct the closing of the air sacs" just like blowing up a balloon corrects damaged rubber. You can blow in a lot of air that holds them open for longer (for the duration of the breath) but by definition that risks damaging them (ever watched a balloon pop while you or a machine tried to blow it up?). Of course, big breaths in without big breaths out retains CO2, ultimately the major cause of death in ALS. Good times!
As for needing more air, any BiPAP can be adjusted in a couple of seconds to give you more, with a lot more precision, control and thus safety, over a longer period of time than breath by breath. We did this frequently for my husband when he had retained secretions. It helped him get strong enough to get them up or swallow them more completely.
"The expiratory pressure, when used in conjunction with the inspiratory pressure, creates turbulence and helps to move retained secretions upward. This can also help induce a normal cough to help expel secretions."
It simulates a cough, but it's not the real thing, as any PALS that has used it can testify.
"Regular use of the Cough Assist provides normal hyperinflation, which has been shown to combat loss of chest wall compliance, or more simply, flexibility of the chest wall."
In some disease states where the nerves supplying the chest wall are normal but the muscles weak (think muscular dystrophy), this could be true. In MND, those muscles can't be strengthened. And again, this isn't "normal" hyperinflation. The balloon isn't blowing itself up.
"Using the Cough Assist regularly helps the user adjust to the device, which is very beneficial when secretions do become a problem."
No controlled trials have supported this assumption in MND. It's just as likely that pressing the dying nerves into action when they aren't needed to work so hard just uses them up faster, and that overstretched muscles [working to bring in more air volume that the PALS needs at that moment] lose elasticity faster. Remember how you feel as a PALS when you overdo?
CA machine labeling includes a warning, for example, that starting with IPAP greater than the current BiPAP setting (a level likely necessary to affect secretions) can pull muscles so they recommend titrating down if this happens. Do you engage in any other therapy that might pull a muscle?
Also note that diaphragm pacing, which also acts on atrophied muscles, was withdrawn from the market as a treatment for ALS, only a couple of years past its approval. It made ALS worse. Is it a stretch to worry about CA for similar reasons? Not for me.
Using CA, to get secretions up, you have to use a breath that is bigger than a natural breath. Since you can't do this 24/7, many of us have found the key to avoiding retained secretions is thinning them out preventively. [It would be nice for this flyer to mention this concept, as a way to minimize the CA pressure necessary and thus safety.]
"Pressure and time settings will vary with each patient, based on effectiveness and tolerance. Adjusting the settings to make the Cough Assist effective is the key to good therapy."
Um, not news. Settings are also key to safety, which is getting short shrift throughout this communiqué.
"Neuromuscular disease, or other conditions, that reduce lung capacity or lung tidal volume and an inability to “sigh,” may result in the development of atelectasis (closing of lung air sacs) and pneumonia. A sigh is a larger than normal breath of air, which stretches the air sacs in the lung. This 'stretching' in turn helps to keep the sacs open or to re-open them."
See above. We don't know if "overstretching" in the name of greater IPAP is prolonging or degrading the ability of the sacs to open, or neither. We do know that, for example, an IPAP when using BiPAP can cause pneumothorax if it's too high.
The MND lung has reduced capacity because of reduced muscle function, not damage to the sacs such as in primary lung disease. While there is no question that clearing retained secretions enables larger breaths and alleviates choking in the short-term, that is the only clear "indication" for the CA. Moreover, a lot of PALS don't have a CA but manage secretions through other means.
This sheet implies that every PALS should have a CA. That's just not true; many will never have one. Read the list of contraindications and risks (that include various heart and lung issues). My husband fell into multiple categories of those, as would many PALS. At least one ALS Forums member has reported better breathing after stopping CA use, and others have reported serious discomfort.
I'm not anti-CA for someone who actually needs it. But I would consider it a "last line" (possibly in conjunction w/ the oscillation vest that it can complement). It's misleading and dangerous to present it as a "must have" without due cautions about risks, effectiveness and safety that are discussed above. If you do try it, start low (below the initially recommended setting) and inch up to efficacy or discontinuation, whichever comes first.
What About a Suction Machine?
Some PALS love them. Most do not. Once again, you can usually deal with secretions other ways. My husband chipped a tooth on one because his jaw unexpectedly and unprecedentedly spasmed (obviously, use for anyone whose jaw mobility is compromised is a serious enterprise) , but that is not why I'm not a fan.
It's a vacuum cleaner for mucus/gunk. But you can't really see what you're vacuuming, which raises the risk of more harm than good. Still, if you want to try, and all other methods of secretion management have failed —
Use an olive tip for safety. You can also use this type (a small size) in the nostrils.
Don't go too far into the throat! Advance slowly, carefully, with plenty of light.
Disinfection of the tips, tubing, and chamber is really important. You can cause really severe infections if you don't, same as with cleaning BiPAP masks/hoses, same as with the Cough Assist.
Some CALS may be really good at guessing where they are suctioning and staying safe/effective and their PALS may have a lot of accessible stuff they can get out. I would estimate that combination occurs in 10% of PALS.