Keywords: CPAP, BPAP, patient comfort, patient tolerability, air hunger, pressure intolerance, respiratory therapist, OSA, CPAP failure
Are we treating the patient or a number?
If you’re a patient reading this, you’re probably thinking "of course we’re treating the patient! That’s me. Here I am!"
Bear with me on this.
So many times in CPAP management, I find that we are more focused on the download being good than we are on the patient and their experience. Something as simple as increasing the starting pressure of Auto CPAP for air hunger or decreasing the maximum pressure for patient comfort and tolerability can make a world of difference. Too often I hear patients getting told, “they said my numbers look good and they wouldn’t do any setting changes. It’s still doesn’t feel right. It’s still disturbing my sleep.“
I had a patient recently who turned in their machine out of desperation because the air was waking them up. I had no idea, so when I found out I jumped into action. After making sure the patient was on board, we were able to get the machine re-issued and change the settings to make them more tolerable. I’m hopeful he’s on a better track now with it. His numbers did look great, but at the cost of making him miserable night after night until he could take it no longer. Before he left my office, I reiterated to him what I tell all my patients on CPAP: “if something isn’t right with your machine, please let me know so I can help.”
Sleep apnea is too important to treat just the numbers and not the patient. Sometimes, I think we need to be reminded of that.
If you’re a patient and this is where you’re at—where your numbers on your download look good but your nights are terrible because your CPAP air is waking you up or suffocating you when you put your mask on—I encourage you to reach out to your prescriber (your doctor, physician assistant, or nurse practitioner) and your respiratory therapist to make things better. I am always grateful for the back and forth I get with my patients to help them have as good of an experience with their therapy as possible. Even when we have setting recommendations from the sleep lab, I treat them as a starting point. I've been at this long enough to know there is a chance those settings won't be the final ones. It all depends on how the patient does with their therapy at home. That’s the difference between treating a number and treating the patient clinically.
When my patients start to feel self-conscious about reaching out on this sort of thing, I remind them “you’re not being a pest or a pain. I’m happy when you’re doing good and I’m glad you let me know so I could help.”
While we know CPAP isn’t for everyone, we don’t want people quitting their therapy when the solution to a better experience could be as simple as a setting change.
If you’re a respiratory therapist and you have patients who are telling you the air is too much or too little, don’t dismiss their concerns just because the download looks good. I encourage you to go farther. Many of our patients these days have not had the benefit of going to the sleep lab for a titration study, so the first time they’ve put on a mask with you is the first time they've put on a mask at all. Tweaking therapy may require reaching out to the patient’s provider to get orders to change the settings for patient comfort and tolerability. It’s worth it to the patient and the patient is going to think you’re awesome for validating their experience and helping them succeed with therapy— even if it turns out CPAP really isn’t for them.
If you’re a provider, especially if sleep apnea and CPAP management is not your jam (but you’re holding the bag on their therapy, at least for now), there is usually no harm in adjusting settings for patient comfort, provided that there is some clinical monitoring after the change has been made. Either you or the respiratory therapist with the DME vendor can check on the progress of the download a week or two after the change.
If you’re worried about residual low oxygen with a setting change, getting an overnight oximetry on therapy can help to reassure that things with it really are doing well. (The download isn’t gonna tell you what the oxygen saturation is doing anyway.) You’ll know relatively quickly from the patient whether or not the setting change was a good one, a dumb idea, or a partial help.
I tend not to let the possibility of a setting change being a dumb idea keep me from attempting it when patient comfort and tolerability are on the line. We never know until we try and I let the patient know as much prior to making the change. If I’m not sure what the change should be, I don’t hesitate to work with the patient's respiratory therapy team and our sleep physician or pulmonologists on the specifics.
I make sure that there is some sort of monitoring plan in place— even if it’s just “call me with an update in a week or two with how it’s going. Let me know sooner if it’s a disaster.“ If we are concerned about a patient's numbers, they can self monitor their numbers right off of the machine when they get up for the day. There are also the CPAP monitoring apps patients can use to keep an eye on their own numbers if they wanted to.
When we remember to treat the patient and not just the numbers, both therapeutic outcomes and patient morale are better.
It doesn't get any simpler than that.
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