Why aren't more data-capable Auto-CPAP machines prescribed?

[SuperSleeper]

Okay, first off. If you actually knew me you could call me arrogant. I can no more call you that without a face to face meeting because you cannot judge tone in a forum. I am simply stating facts based on what I KNEW so far. Since you gave me your story, and I did read the entire gospel, (you used exegesis, I was just building on that), I have come to some conclusions that you have drawn that I just want to rebut and then I am going away to a forum where my opinion may not be appreciated but not taken so personally offensive.

I am not minimizing you or your concerns. I guess I am different from a lot of techs and clinicians because I DO tell patients about their options. In fact what sets me apart from a lot of my colleagues is that I DO use CPAP. It is my "ace in the hole" so to speak with patients due to the fact that if they are anxious, telling them can IMMEDIATELY put them at ease. I have had some severely anxious patients. I pride myself on going above and beyond because unlike some others in the field I am in it for the patients and then the paycheck not the other way around. You slinging around the word arrogant is assumptive based on one word. Negativity. It would appear that a lot of assumptions got thrown around by both parties because even in your last few sentences you painted Meaghan and I with the same broad belligerent stroke that assumes that we think you nothing but a cretin. I am going to lay that to rest and just give you a little better picture of me. Maybe just putting factual information out there can come across as arrogant in a forum. I apologize if I sounded arrogant as it was not my intention.

There are a lot of techs that don't say anything to their patients at all. They set them up, they run the study, they may put a mask on them in the middle of the night. They don't feel it is their place to say anything. Maybe it is a fear of reprisals, maybe it is that they don't care and are just "doing their jobs", maybe they simply don't know what to say. I truly think that if I can impart some knowledge to a patient about available treatment options, put out the pros and cons of each based on my encountered and book learned experience, it is my responsibility to do so if doing so will make a patient more in the know about their future possibilities. I ALWAYS ask, do you have any concerns or questions concerning...a) the study b) the treatment c) living with PAP. As I said a lot of people don't even know why they are sent to the lab. That alone would be frightening enough.

AutoPAP is prescribed to most people nowadays as HSTs take away a lot of the patients that labs would have used to see. I know this first hand. I myself was unaware that there were chips in the newer machines until I got into this field. I was blissfully ignorant that I could change my pressure without having to go to a sleep study again. I, like you, took control of my treatment and figured out how to do so. In my case, I lost 24 lbs and my pressure needs increased. I am cursed with a smaller than average airway. I did not want to go back into the lab, not because of a bad experience, just that it was impossible for me to find a lab that I did not know at least one person that I worked with and I did not feel comfortable with being monitored in my sleep by my coworkers. I have gotten over this, but it was an anxiety of my own. After researching further treatment options, I asked my doctor to prescribe me a ResMed S9 AutoSet with a pressure range between 10-20. He did so and I walked in and got the machine. No arguments, no questions. Insurance paid in full. The simple fact that I had used CPAP for over 10 years at that point was one of the only reasons why there were no problems.

continued.

[SuperSleeper]

Alot of reasons why we don't tell the patient everything about the study is obvious, we don't discuss results of the study, we don't discuss AHI or anything we observed (except for snoring) and if the pt qualifies for a Split night we simply say that they met criteria. This is because in the grand scheme of things, the physician makes the call.

Pulmonologists, cardiologists and neurologists are at odds with each other in the sleep medicine field quite frequently. They are all looking for different outcomes for different reasons. Some pulmonologists would say that you don't need to even have a sleep test in order to diagnose OSA. Others physicians will look at a person with a low BMI and say that they aren't at risk for OSA and forego a study. I say that the devil hides in the details. I have seen people of size with no OSA and I have seen people with considerably less have freakishly high AHIs. However, arrogance can take hold in medicine and the only way a patient can do anything about it is to take charge.

I hope that you are now getting the sleep that you need. I myself had that life changing experience when I was 29 and never knew that my sleep, or lack thereof, was responsible for my awful memory and mood. It kept me from feeling confident enough to pursue a career in medicine. I can't say that I have one bad thing to say about the entire process of my evaluation and titration experience. I have had a total of three studies done. Again, I apologize if my words come off as arrogant, I was trying to shed some light on possibilities as to why AUTO-PAP was not prescribed to all. It got quite a bit out of scope, but it was a great converstaion.

Quality of care does vary throughout the country.

[SuperSleeper]

Rob - pretty much all good. I have no way of knowing if you are exceptional or not in your willingness - your perceived duty - to speak with the patients. I commend it anyway. Wish I had you when I did my study.

That is not meant to badmouth the techs who did my study. As I repeatedly said, there is nothing in their job description to compel it, and there are liability issues, and who wants to get between two MDs, much less an MD and their patient? Understood all, and I thought I had absolved you all.

Except morally - anyone has, in my opinion, a moral obligation when they see someone cruising down a dangerous path unwittingly. You by your description understand that. It doesn't mean you counsel people as to what equipment they SHOULD get, but someone somewhere should be counseling patients as to what's available, what might be good, the pros and very much the cons. Terry sounded like he comes from a supplier who does educate people as to the pros and cons. As I said, had I spoken to him instead of the company I had, I might have never gotten an autopap. But at least I would have known that such a thing existed.

I have no way of knowing if other suppliers do such informing; what I do know is that mine certainly did not. Nor did my original pulmonologist. I understand that other types of MDs might debate the merits and demerits of such and such equipment, but that was not my case. For the pulmonologist not to educate me thus, it is hard for me not to consider that "dereliction of duty".

Especially since my subsequent pulmonologist was so forthcoming...

I would be remiss, derelict in my own own duty, as it were, to suggest that there is no cravenness in the system - like it or not, there are some suppliers that purposely shunt patients to older equipment to clear their shelves. Similarly, there have to be MDs "in cohoots" with such firms, for whatever unsavory reasons. They exist. I know at least one.

But that's not my point. Well meaning or not, craven or not, the facts on the ground in my limited experience - which includes many conversations with other apneoids - is that the system - diagnosis, testing, measurement, equipment information and training, information dissemination - is failing a non-trivial number of patients. It forces them to take control of their care, ex post facto. But how many are truly capable?

This of course opens the door to a wider issue - the medical system in general - but I don't wanna go there. For people I suspect might have the problem of OSA, as you call it, I counsel them to get a sleep study. I counsel them to find a pulmonologist or maybe even cardiologist or dietician. But I also cue them into the vast array of equipment, how they differ, this Apnea Board, etc.

My point is - why doesn't the system do that?

And why shouldn't it?

One last point - I know it's hard to hear words like "condescension" and "arrogant". I am quite sure that if any of the people I identified (all after ad hominem attacks on me, btw) perceived themselves to be arrogant or condescending they wouldn't be on this Apnea Board thread. Granted.

That does NOT absolve them from unconsciously having arrogant or condescending attitudes. I suggested that several comments in this thread have exposed such a thing, and I wanted to make sure the authors knew how we regular people interpret such remarks.

No doubt it was not their intent. And I was remiss in making that clear. I believe it was not your intent.

But I did, and do, challenge you to "check out your mind", and consider that some things you think may be true - even if based on your experience in these matters as a professional - might not be. You just might be wrong about some things, and you should reconsider them.

Only you can decide that. But I encourage you to engage - in your own mind - in the re-examination.

Because I can tell you - there are a lot of people like me out there who need you to.

[SuperSleeper]

As long as it is a money making venture there will always be cravenness. As long as businessmen run the show, patient care will suffer. The system is essentially flawed as are all others. Nothing is perfect. It is how people, thankfully, like you go about bringing this to the forefront of our minds.

I have examined this since day one. There are a lot of things that I don't agree with about the way things are handled nowadays. Especially in the way Apnea patients are treated in the aftercare. I have heard stories worse than yours. I don't close my eyes to them. But I believe that it is my responsibility to help turn a patient in a more productive direction.

I often tell patients that if they are prescribed CPAP, the key to success is commitment. IF they can get 4 hours without tearing off the mask, they are getting 50% better sleep then they were before. Pick it up put it back on if you can. Every night do the same thing. Eventually time will become habit those 4 hours will become 6, and then become 8 hours. I tell people it is NOT a magic pill. It takes some perseverance on the part of the patient. I also tell them, whatever THEY give you, know YOUR options. The mask they get is not the only mask out there. The machine they get may not be the best. It is up to them to speak their minds. Some people give up all too easily as I said before.

I would recommend writing to the BBB about your experience with that DME. There is no issues, why? Because someone did the same thing and probably got frustrated and didn't file anything with them either. Do you think you have a responsibility to the public to make them aware of these slipshod marketeers? I think that doing any less is a disservice to the consumer. Let it start with you. Change can only come about when people start acting and informing each other like we are doing now.

I am sorry that you had to write so much to tell your story. But as they say, ask the right questions and you get the answers you seek. You gave me a bit more to think on. I would still wonder what the overall night was like during your study from a tech point of view. I think that your issue was more in the aftercare than the study itself however.

I am sure I am wrong about some things, as we all are. I am as flawed as any human is. However, when it comes to hard consistent facts, I will always choose those over my feelings or experience any day.

[SuperSleeper]

You are, of course, right, Robb. I should have, should still, file a complaint. Think I will, even tho it was now 5 years ago.

And I didn't mean to complain about my experience qua my experience. There are TONS more people with cases far worse than mine. All I meant to do was get more people to care like yourself.

Maybe since you use a CPAP, that's why you care...?

Anyway, tx for your contribution.

[SuperSleeper]

I think that everyone who has commented on this forum cares. Otherwise why bother?

I care because I know what it is like to be where you were and how other people are with their sleep problems. There are people who care without this knowledge. But there are a lot of people who just want to jump on the cash cow that DME can and does become. Like everything, once the market becomes saturated, it will cheapen the care certain individuals receive. I don't like to see that happen any more than anyone else who really cares about the patients they serve.