The sleep industry and us, a presumptuous view.

Tonight I was helping an elderly relative get her treatment refined. I've written about her before. Since she lives in another state, she has to mail me her card. Right now we are seeing large leaks with her mask. The last readings had showed slow but steady improvements, but now it's worse. I'm trying to help her over the phone to figure out what's going on and how to remedy it.

I'm feeling slightly frustrated with her DME (insert typical incompetent DME story here). I sure wish they would do their job and help her with this. It's hard to do this over the phone and long distance without seeing the equipment, etc. It would be much more efficient to have someone do this in person. I hate to see her be 100% compliant and still have large leaks and an AHI over 7.0 nearly every night. She feels much better. Most people would call this success, but I know it's only half success.

So, I logged on here and saw this post in another thread. It is a thread about a sleep specialist who didn't know you could get data readouts from a ResMed Elite.

NeedinZs wrote:This is just unbelievable to me, that these so called "sleep specialists" can know so little about their "specialty" and lack the common sense to come up with some of these ideas to help people themselves.

How do these people get thru Med school?

Careful, Den, word gets out about YOUR common sense approach,
this Sleep Specialist may offer you a job!

By the way, it's not just sleep Dr.'s. I have seen so much incompetence in the last 5 years, it really blows my mind.

I started to respond, but then went far afield from the original topic so thought I'd start a new thread.

I suspect than the majority of people on this forum are at least as smart as and often smarter than most doctors. I don't mean that they have the information or training of doctors, but we make a big mistake thinking that doctors are smarter than we are. I don't mean that doctors are dumb (though a few are). But if we have better information (which this forum provides) and we have native intelligence equal to or greater than most doctors (except a few brilliant ones), we should just assume that we are peers in a certain way. I DON"T mean we have the training in many areas. I go to my GP because he knows about many, many things I don't. I respect all my doctors in the breadth and depth of their knowledge and the skill gained over many years. However, a reasonably smart, determined person could probably make it through med school given the right circumstances.

What I'm saying is that these doctors don't have information about sleep apnea and cpap equipment, including especially software for monitoring progress (the point of the thread I quoted from above). They should, but they don't. It's not given during their training. After they finish training they have 15 minutes with each patient and too many patients to see per day.

If you have a college degree and some savy about science, you could probably learn from many of the extra credit activities that doctors routinely use to keep up with things in their field.

If you have spent much of your time in the past year reading and posting on this board, you are going to know more about treating sleep apnea than nearly all doctors, RT's and sleep techs. (There are notable exceptions and some of them post on this board. They know WAAY more). But except for these, we might as well admit that and start from there. It is then up to us to communicate with our doctors about the equipment and how to use it, to work as partners with them. But we need to find doctors who are willing to do this. Not so easy, but possible.

I have a fabulous doctor who doesn't know as much as I do about OSA and cpap treatment. He's a GP, not a specialist. He's quite interested, but is unlikely to spend the countless hours I have on this board learning all this stuff. He has asked for links to various things and has used them. But he openly admits I know much more than he does about this. But we do discuss it. I know he refers a number of his patients for sleep studies.

And there are a number of people on this board who know far more than I do. Nearly all are not doctors, just very smart, dedicated, amazing people. Some of them are in the sleep medicine field, most are not. Thank God for all of them.

There's a saying by Margaret Mead that goes something like this "Never underestimate the power of a small group of dedicated people to change the world. Indeed, it’s all that ever have." It may be that the people on this board (and a few other forums on the internet, not as excellent, but still good) are changing the world when it comes to treatment for sleep apnea. This group has changed my treatment radically. There is a ripple effect: I have made a difference in the lives of people I know directly as a result of this (family and others). The elderly relative I mentioned above is likely going to get someone else she knows started on her "closet cpap."

I think it is a different model of treatment that we are seeing. Although I've felt plenty frustrated in trying to help various people through their diagnosis and treatment, the problems with the medical system are nearly always the same. The medical system doesn't work very well with this treatment and that's a fact! The cpaptalk forum model is very different. If people are willing to work at it, and work very hard sometimes, it can work quite well. We keep finding better and better ways to solve problems.

I'm only frustrated because I know that there's a better way. That way exists here. It does not appear to exist in the majority of places that treat sleep disordered breathing.

It's a presumptuous view, but I've come to believe that we should start by assuming that we are USUALLY AS SMART as our doctors, RT's techs, etc, and AS A GROUP WE HAVE A SUPERIOR SKILL SET when it comes to this area. I further believe that this should not be seen as diminishing the skills our doctors do have (assuming we choose our doctors well).

What do you think?

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): resmed, CPAP, DME, AHI, Power

Just a quibble, Rosemary, but it was an NP which I take to be an RN Nurse Practitioner that was the subject of the original thread, not the sleep doctor. Hopefully the sleep doctors know you can get info from the machine.

I hope the NP in question joins the board here. It would be interesting to hear his take on all this. I know at first hand the way different departments guard their own interests ( eg I have had a respiratory tec tell me she would never accept a spirometry supervised by an RN - and I am an RN trained in very sophisticated respiratory testing equipment). I would not be surprised if he (ie the sleep Nurse Practitioner) has been taught that the machine end of the therapy is none of his business!

I wish nurses were more defensive of their role. Too often we allow allied health to erode our areas of knowledge, and though we don't need the same detailed expertise in eg respiratory technology as a resp tec would have, the case in question illustrates how some general knowledge of the area can only be of benefit to a nurse's patients.

Die

edited to clarify ambiguity

Kudos, RosemaryB, for a very well thought out and well written post.

Oh, and yeah...I agree.

This forum has indeed equipped us with targeted information about our treatment that many even in the medical field have not had the advantage of (or the need for by former standards). The sleep field is still an emerging industry and I doubt that specifics of the machines' capabilities has even made it in to much of the curriculum yet, or ever will be. There is so much to know these days that there almost has to be a distribution of knowledge on a need-to-know basis. But it is bad when those who do need to know don't. As far as sleep docs go, I don't think it's so much as they don't know, but they just don't have the same confidence in the validity of the data that many of us have.

Here's what I wonder - to what degree are the experiences that we on this forum have had representative of sleep apnea patients as a whole? Many of us ended up here because of our struggles that were not being addressed by our providers. What percentage are we of the whole? There may be a gazillion patients out there with their DME, RT or sleep doc monitoring their care thru the machine data and being given great service and support, or even without machine data. They for the most part will not have occasion to find their way here.

I believe we are on the cusp of change. The thought just crossed my mind that I bet the first diabetics to do home blood sugar monitoring had similar conversations. They were probably quite proud of their accomplishments and skoffed at some doctors' skepticism, as they knew firsthand how this capability radically improved their ability to effectively manage their diabetes. Now it's the norm.

Maybe we are pioneers. Then again, maybe we're just a fringe group of lunatics made crazy by sleep deprivation. I think I'm a bit of both.

Kathy

Very well expressed, Rosemary!
And yes, it was an NP whose hands are tied to a certain extent by the doctor above him. However, this same NP is giving classes to other NP students in the same field. (we're talking big hospital here, folks) It's a breeding ground! There are a lot of students who, unless they go looking for more information, will turn out the same.

I tend to agree w/RosemaryB. Most sleep doctors are NOT all that familiar w/today's CPAPs and their capabilities beyond Ramp, expiration pressure relief, pressure settings, what pressure ranges are available, need for bi-level or SV type of device and compliance. They are quite content to let others in the field such as DME supplier staff, "maybe" an NP or someone else on their staff, acquire the familiarity w/the actual equipment. Nor do I think they understand the "fine tuning", the "tweaking" to consistently produce AHIs under 5 cms. Way too many of them don't even bother to look at the right data presented to them from the data printouts.

IF THEY DID THEY WOULDN'T BE SCRIPTING ANYTHING OTHER THAN A FULLLY DATA CAPABLE CPAP and would write their equipment orders specifying them.

And I truly believe that sleep apnea is the newest "cash cow" and that too many are drawn to the sleep profession AS A SUBSPECIALTY only because of the easy financial lure. It is too easy to become a "sleep specialist" w/less than adequate training and knowledge required. The standards are NOT set high enough.

Rose,

Great post!

I once heard a doc describe one of the problems as being due to the fact that in medical schools they teach the "fix-it" model of doctoring. She drew a picture on a board showing a stick figure of a doc with a fair amount of detail and then a sad face (face only) representing the patient. The goal of the doctor was to have the patient leave pictured as a happy face. Like most of us, docs prefer instant gratification (seeing patient get better as a result of what they do). It's much harder when no matter what they do they don't see the patient get better .....

This particular doc is a geriatrician and she said that the old model doesn't work well in geriatrics because people have so many chronic conditions. IMHO, it doesn't work well in other cases, either because there are also chronic conditions in younger folks. It will take a long time for the physician culture to change dramatically. This is especially true because so much of the learning by new docs is under older docs tutledge. There are, of course, some outstanding docs who do incredibly well with patients with chronic conditions. However, I think that's still the exception rather than the rule.

The things some members of this forum are doing to educate their MDs, NPs, etc. about sleep apnea can only help the process!

Mindy

Rosemary,

Very thoughtful post. Your CPAP treatment must be going well, compared to mine, because I still can't put thoughts into words together like that,

I did want to try and make clear my thoughts (or intent) of my post that you quoted.

What I meant was that this "sleep specialist", and others that are working in this field should learn everything there is to know if they are treating patients for a specific disease or condition, in this case in a sleep center in a respected hospital. Especially in a field that has so many patient drop-outs. Diagnosing patients doesn't help one bit, if that patient can't get the right type of treatment to work for them.


I know they can't know EVERYTHING, but I wouldn't want to take my BMW (yeah, right, like I really own one!) to someone who's only worked on a couple of lawnmowers.

And it kind of irks me, that the NP or his "higher-ups" would expect someone to PAY for ANOTHER titration to UP the pressure by one, when they could just trial an AUTO. Sounds like a money making scam to me.

I'm just a little jaded on Dr.'s right now, because I can't seem to find a competent practice. My last experience was really unbelievable, almost to the point of malpractice. I am about to give up on all of them!
But that's a whole other post...

Thanks for listening!

Hi, I think part of the answer (was there a question?) is that MD's are stuffed full of the stuff of OSA - the math, the chemistry, etc., but somewhere along the way it's loses in translation to dealing with patients and the practical side of things that we deal with is almost irrelevant to the MDs, which may be a fault of the way they're taught, and only maybe in another generation, when sleep disorders becomes its own serious specialty rather than an offshoot of pulmonology, geriatrics, endocrinology, etc., will the whole picture come together for them. We are the guinea pigs in a way, but I don't think MD's are dumb (and most of them are smarter than us whether we like it or not ), and like it or not (and whoever was at fault) the old story of noncompliance in the MD's eyes is still a big factor (first impressions and all that), so we may just have to wait a bit longer for them to catch up!

Yes, Rose, I agree that most of the regular posters on this board are different in many ways. It takes a special kind of person to get a diagnosis and then learn everything about it, immerse themselves in it, so to speak. Most people don't do this. Both of my parents are completely disinterested in their own health. My mother has diabetes and eats like a typical American anyway, thinking she is safe because she takes a pill for it. She thinks a healthy meal is a steak, an iceberg lettuce salad with ranch dressing and a baked potato stuffed with butter.

I, and most of us here, am not like that. It's not so much that I'm obsessed with myself, I'm just a curious person who is interested in EVERYTHING. Before the internet, I was a library junky. I used to weekly check out a stack of books on whatever interested me at the moment. There for a while I did some heavy research into the 12th century feudal system. I was more thorough than a typical college course. But I'm guessing many of you know where I'm coming from because you are just like me.

The internet made almost every question mine for the searching at a moments notice. Just last night I spent an hour looking into the controversy of vitamin D supplementation in pregnancy. I could have asked my doctor, but how could I be sure he was up to date on all the current information? And I have learned to not trust everything I read, to be thorough and cross-check, and to search out the most authoritative sites for the best answers.

You are right that we are just as smart as the doctors. And we have two things the docs don't have: a personal vested interest in our outcome, and the time to dedicate to our own research. It is a steep learning curve, to be sure! I wouldn't expect a GP to have this kind of knowledge of sleep medicine, but I do expect my sleep doctor and RT to have it. Sadly, I have not found it to be the case. My sleep doctor, I fired. My RT is open to learning, so I bring things in and show her and take the opportunity to teach as I have so many times in my life.

As for the general population, well, they seem to have other strengths and interests. While I could not for the life of me imagine how their brains work (mostly on trust, self-deception or apathy?) they obviously have other things on their minds that they prioritize differently than we do.

So, while it is frustrating to find out that our health professionals aren't current on all aspects of patient care, we do have to be grateful that we are living NOW in the information age where sites like this are available to look for advice. 10 years ago, information would have been far more limited and 30 years ago, cpap was in its infancy and probably wouldn't have been readily available. With time, I hope to see sleep medicine improve and expand. It is really in its infancy and we need to be grateful that we aren't all walking around with tracheostomies!

Great post!

Jen

.....plus we each have a deep first hand knowledge of our own body-that cannot be taught in medical or nursing school. The thing that could be taught is to respect the patient's story of his/her illness and the response to treatment.

I'm wondering if the "sleep doc"s not knowing much about clinical application is because they are more like radiologists........interpreting a test, rather than a clinician/care giver. Maybe once this specialty is around longer, they will appreciate the need for real sleep doc clinicians, instead of just having them be "experts" in interpretting the sleep studies.
Having the sleep docs also take care of the patients is sort of like having the radiologists take care of the patient with the problem on the xray. ??
I agree, a "sleep doc" shouldn't be doing any more than interpretting the test, if they don't know how to work with the patient to achieve a healthier patient.
My Internist is really on the ball. I think the next time I see him I'll ask if he'd be interested in working with me on this. I sure he'll think the sleep doc knows more, but I doubt it.

Excellent post!

Learning requires the three Rs: repetition, relevance, and reward. If you are posting and reading here regularly you are getting the repetition, when it's learn or die that's relevance, and feeling better is the reward. I think it's safe to say we are all ideally motivated to learn about SDB.

Thank you for all the insightful posts! I just was doing a long post in response and somehow it disappeared .

I don't have time right now to recapture most of it, but wanted to respond to Socknitster's ideas about looking for information. I sometimes refer to myself as a "data junkie." Since the beginnings of the internet, or at least when I could telnet in via Compuserve, I've been somewhat addicted to finding information on the internet. I've been helping various people with SDB diagnosis and therapy and have recommended cpaptalk for those that use the internet. Then I'm puzzled, not to mention disappointed, that they don't log on and spend all their spare time finding out about SDB and xpaps. The point that we are a select group (I said as smart as most doctors) is related to this.

But despite the fact that I was an information junkie for many years and researched several chronic medical conditions and have often better understanding aspects of the conditions than most of the doctors I saw, this forum caused me to internalize that fact. I still saw doctors has being the place to find the answers, even if I put together much of the puzzle on my own.

It was an important realization and also an emotional upheaval to see that I was on my own as far as the medical system was concerned with getting this treatment to work. But not really on my own, since I was able to get information (and comfort) from people on this forum. People who knew more than the doctors, the RT's , the sleep technicians, that I had contact with. This group is golden!

Great post Rose!

It's just a reminder that we all have an responsibility to advocate for ourselves.

We all read the horror stories, but there are DME's and Doctors out there who are willing to listen to the patient's perspective, and see that as a major part of their continuing education.

So when we do our part, and educate the professionals, we'll begin to see change in the medical profession. And when we find a great Doc who's willing to listen, make sure we let them know how much they're appreciated.

Now if only I could find a good dentist, who would let me talk a bit before shoving something in my mouth . . .