A question of semantics: Why does the patient fail CPAP?

[robysue]

This whole train of thought is rattling around my head because I'm in the process of finishing assigning grades to my calculus students, a number of whom will fail the class. And my father's advice about talking to such students is echoing through my head: Robin---remember you never give an F to a student, they earn that F through their own lack of work.

So my question is simply this:

Why does everybody connected with our care say "The patient failed CPAP" when they are medically justifying the switch to bi-level? We, the "failed CPAP" patients, didn't fail at CPAP---No, the truth is: The CPAP machine failed us in the sense of making us feel substantially WORSE than we did pre-CPAP or in NOT bringing our AHI down to acceptable levels or in triggering enough CAs to result in a diagnosis of CompSA.

Saying we failed CPAP makes it sound like WE, the patients, did something wrong or didn't try hard enough. And this implies that we, the patients, are responsible for "failing" CPAP. Which is downright depressing if you are someone who has made a long term, honest 100% compliant effort to adjust to CPAP since it completely brushes aside our efforts.

The truth is, the machine failed us and we needed to be switched to a more appropriate machine.

[NightMonkey]

Overthinking?

[Dreamrobot]

thank you!
when the system (doc, dme, whatever) does not challenge itself ,remain inquisitive, listen to the patient or actually choose to be complacient, it's easy to "blame" the patient for not succeeding.
shoot, I'm also extremely compliant, follow my data , question results but what I get back is: just hang in there, keep on using the machine, oh some people just never feel better with cpap.
what!!!?? No , I figure something's not right , I gonna find out what.
Dreamrobot

[70sSanO]

It seems to me that for some the system fails, just like our education system.

Some honestly don't care; which in itself poses the question why? But there are those who have a really tough time learning, whether it is an overwhelming anxiety in class or some other stumbling block, they get an F none-the-less and life goes on without them.

It is the same with CPAP. There are some who need that extra attention or help to succeed with their therapy and typically get an ill-informed doctor who merely writes the script and an equally disinterested DME who is trying to minimize effort and maximize profit through an insurance company that would rather deny the patient than to strive to get the patient well.

Few in either system are willing to peel back the onion and really tackle the problem becuase from it is easier and/or more cost effective to support the A student/CPAPer and accept collateral damage than to take the steps necessary to ensure 100% success.

John

[marcosv]

Honestly, if that phrase "patient failed CPAP" appeared with the recommendation to go to Bilevel, I don't mind at all. It's a short hand and is aimed at the insurance company.

Of course, the words "patient failed" have a deep meaning for a lot of us. In my case, I've been having a frustrating time figuring out how to get myself to a stable situation. Between a compliance only CPAP machine, a HMO that has very limited mask/machine selections and not very responsive help, I had to take matters into my own hands, buying my own machine, chin straps, and masks --- I don't want to waste months doing it the slow way.

Looking at from the other side: medical treatment is expensive and getting more so. So I can see cheap treatment being the norm moving forward, especially with medicare and lots of patients. In that enviroment, I can understand why a lot of treatment is going to be based on what works for the 90% or so of us with the unlucky 10% taking a lot longer before the proper diagnosis is achieved. What's sad is having medical professionals that aren't properly trained and aren't keeping current with the latest methods and technolgies.

[Crayongrl]

The use of the word fail doesn't assign blame in either Medicare or private/commercial insurances. It is used to indicate only that the treatment has been trialed and is ineffective. Most insurance companies don't really care WHY the treatment failed - only that the least expensive method of treatment has at least been tried before moving on to a more expensive method.

When I review requests for BiPap for OSA, I never look to see the WHY - only the TRY.

What I have seen as to why failed -
*Patient unable to tolerate masks
*OSA not controlled with CPAP despite high pressures

[Slartybartfast]

Lots of reasons.

1. Poor communication among (Choose 1): (10 points)

A. the physician
B. the patient
C. The DME
D. all of the above


2. Lack of caring by (Choose 1)? (10 points)

A. the physician
B. the patient
C. The DME
D. all of the above


Essay (50 points):

Explain or demonstrate how patient commitment to a course of treatment involving the use of a sophisticated and costly medical therapeutic device might be affected by the degree to which the cost of the equipment is reimbursable by the patient's medical insurance plan.

[robysue]

The use of the word fail doesn't assign blame in either Medicare or private/commercial insurances. It is used to indicate only that the treatment has been trialed and is ineffective. Most insurance companies don't really care WHY the treatment failed - only that the least expensive method of treatment has at least been tried before moving on to a more expensive method.

I know that's the intent of the language. But fail is an active (and transitive) verb in common English and it's the pyschological aspect of having the reports written as Patient failed CPAP instead of CPAP therapy was unsuccessful that I'm interested in here.

Being told repeatedly that I was failing CPAP because my symptoms were getting worse and I could not tolerate the aerophagia was a psychological blow to my already shaky ability to cope with the OSA diagnosis and the efforts to make this therapy work.

I walked away from the appointment where the PA finally recommended switching to bi-level because "you've failed CPAP" feeling utterly befuddled, confused, and wondering just what the heck I was supposed to have done differently with my APAP at the time as well as completely befuddled as to why I stood any chance at "not failing" BiPAP.

Now it turned out that the switch to BiPAP was a positive change for me---for reasons that I now understand. But it's not that "I have succeeded with BiPAP" and "I failed at CPAP" because I did the same thing with both machines: I slept with them every night, all night long. Rather CPAP therapy turned out to NOT be effective for me because the aerophagia and inability to breathe out against the pressure (even at my low pressures) were triggering enough arousals and enough discomfort to make the quality of my sleep far worse than it was pre-CPAP, which in turn lead to major deterioration in how well I was functioning during the daytime. The instant and complete drop in pressure from IPAP to EPAP on every exhale has helped the worst of those problems, but not eliminated them entirely, and I still have severe insomnia that was triggered by my initial start of xPAP therapy back in September. But some major progress has been made in tackling the insomnia and now on the occasional day I actually DO feel better and more like my old pre-CPAP self. And even almost fully functional at times. So in spite of it all, I continue to use this BiPAP every night, all night long in the hope that once I succeed in defeating the insomnia, the BiPAP will be a positive thing in my life instead of the negative that it continues to be right now.

And at this point, at my last follow up for the insomnia, the PA basically told me, "Since you're failing at BiPAP in the sense of not feeling any better yet, at this point I want you to follow up with a sleep apnea dentist for a consult for an oral appliance before meeting with you again." This language HURT in more ways than you can imagine since it makes me feel as if I am the one who is "FAILING"---failing to feel any better, failing to get past the insomnia, and failing to sleep soundly through the night with the machine through some fault of my own behavior. And also failing at being a good patient since I have no desire to try an oral appliance because (a) my apnea is in the middle of the moderate range and (b) I have severe TMJ problems, both of which usually considered contraindications for the oral appliances. And both of these things are on my chart and we'd previously discussed them when I was being told that I was "failing" CPAP/APAP back last fall.

[robysue]

Slartybarfest,

Love the final exam. Wish it would be a mandatory part of the training for ALL who are connected with our care from the sleep docs down to the DME and insurance paper-pushers.

You brightened my day. Thanks.

[Slartybartfast]

Perhaps this is more useful: I asked that question of my sleep doc. He replied that lots of doctors run sleep labs, many of which are unaccredited. He said he was very frustrated by the cavalier attitude many in the medical profession, including those on the equipment vending side, take toward the proper diagnosis and treatment of sleep apnea, which is a serious condition that merits serious attention. He continued that his experience has been that his patients have a very high rate of compliance, and when there is a problem, he spends the time to address it, so they don't slip through the cracks.

How many noobs have shown up here, bleary-eyed, having come from the DME who gave them inadequate training on the use of their equipment, who then asked us to help them make sense of it all. Some of whom were prescribed a machine without even having a sleep study? What does that tell you about the state of the medical care system?

I bought my own equipment out of pocket, not wanting to deal with a DME, and not content to take the non-Auto machine I was offered at the sleep lab/DME by the sleep doc who doesn't believe in automatic machines. I was motivated because it was my own hard earned after-tax money that bought the machine. Had I been given the machine and told that Insurance would pay for it (in other words, somebody else), I might not have had the commitment I otherwise did.

[Crayongrl]

OFTLOG.

[Slartybartfast]

[snip]
When I review requests for BiPap for OSA, I never look to see the WHY - only the TRY.
[snip]

"Do, or do not. There is no "try."

-- Yoda

[robysue]

[snip]
When I review requests for BiPap for OSA, I never look to see the WHY - only the TRY.
[snip]

"Do, or do not. There is no "try."

-- Yoda

Thanks Slarty,!

After almost seven months of sleeping with a hose on my nose every single night, all night long, I would not use the word "try" to describe what I've been doing and continue to do each and every night. I'm doing my part. And I am NOT the one "failing" in this relationship between me and my Kaa.

[Slartybartfast]

Glad that resonated with you. There are good sleep docs and bad ones. Good DMEs (and staff) and bad ones. And motivated patients and "victims."

The important thing is not to be passive about it. Don't give up and throw in the towel and say, "It didn't work for me." I've heard that from a number of people I've spoke with over the past 8 months I've been on the hose. Several of them, after talking with me, have gotten a new sleep study and and a new machine and are back on the hose and are crowing about how much better their new equipment is than it was 10 years ago, and how much better they feel now, despite being that much older.

[Slartybartfast]

And I don't think that the term "fail" should necessarily be taken in the pejorative sense. When someone is dying, we say they're "failing," after all. What's important is to keep your eyes on the goal and keep slogging along, putting one foot in front of the other. After all, one of my polygamous ancestors who migrated across the West to the foothills of the Wasatch mountains was heard to mutter,

The Journey of a thousand miles ends with the last step. (or words to that effect)

There are lots of reasons we have trouble with the therapy; that's the reason for this board, after all.

Hang in there and keep at it.