Do some docs (and others) want us to stay stupid?

[JimW203]

When I read through Slinky's post regarding VPAP pressure support

viewtopic/t39438/Talk-To-Me-About-Resme ... pport.html

I was intrigued at the lucidity of the question and the depth of the responses.

It made me wonder at what responses one might get posing the same concern and question to one's own sleep doc or DME RT?
If you have ever posed a similar question (one that requires a detailed technical response give as if to an intelligent, competent, and knowledgeable person) I would like to know what response you got.

The response I got in my first visit to a highly regarded sleep doc here in Orlando, when I attempted to get him to look at the data from my ResMed S8 Elite II, was that the data from such machines is meaningless. He wanted "peer reviewed data" only (whatever that means in the context of a daily treatment regimen). All he wanted was the compliance data. When I gave the card to his RT to read, she came back saying she could not get the data from the card. We recorded the card again (I had the machine there); it failed again. When I asked what version of ResScan they had, she said "we have all the latest software." When I asked if she could take the data directly from the machine using the USB connection, her response was "do you want to do it yourself?" It was clear from her tone that it was not a request for assistance. At that point, I decided it was time to pull the plug. I had been kept waiting more than an hour and a half for the doc; they hadn't bee able to find the sleep study reports that had been faxed to them more than a week earlier; when the study was found, the doc said I wouldn't understand the complexities of the report and that the only thing I should concentrate on is doing what I was told. I am seventy years old, and it has been at least sixty-five years since I've accepted that logic. All my life I have wanted to know how things work and to explore what was going on in systems of all types. One of my first jobs was looking at the output of certain systems and hypothesizing how those systems produced the results. The point of the process was to look for vulnerabilities in the systems that could be exploited to defeat them. Thus, knowing how things work interests me and I resent being trivialized in my relationships with some doctors.

Rant over - I would like to know others' responses to the original question. Someone else can have the soapbox now.

JimW203

[dieselgal]

I think they do want to keep us un-informed . That way they can keep getting us in for expensive office visits and keep us paying for new masks and equipment they should have prescribed for us in the first place.
They can pawn off crappy equipment on un-informed desperate sleepless people while charging us for top knotch goods.
To me it is no secret. It's all about the money .

The sad truth is that many people on this board know more about the equipment and legalities than the people that are suppose to be helping us manage our OSA.

[ozij]

A short answer is yes, of course some docs do...

However, part of the time the problem is our expectations. We expect the doctors to understand the machines, but for some of them, that is simply not part of their job. As a rule doctor's job is diagnosing: concentrating on differential diagnosis -so he doesn't get two problems mixed up, and prescribing the medicine. However in most areas, the doctor is not the persons doing your ongoing therapy - ages ago (ok, may decades ago) a doctor would send you the pharmacist, and the pharmacist knew how to mix chemical to make your drug. The doctor did not.

The doctor does not know much about how you should run your insulin pump - he's read papers that show it works, he trusts it to do the job, but he does not know how to set it up.
If you've broken a leg, a surgeon may set it - but he does not do your physiotherapy. The surgeon will not teach you how to walk, how to use crutches, or how to use a wheel chair.
A pulmonologist is not an RT.
And so on.

I am very grateful to my doctor who 4 years ago, when I tried to discuss the problems I had with my first therapy settings said "Talk to the technician, I don't know much about the machines". I'm not happy about that being his response - but that did give me insight into the situation.

Now, some doctors may want to keep us stupid. Some may not want us to know they do not know everything. Some may be overwhelmed by the need to see more more and more patients and they want to get us out of the room as soon as possible, some may be concerned by liability issues, some may be stupid themselves. And some are great.

O.

[BeanMeScot]

Makes me glad I never actually talked to a sleep doctor. My PCP was under no illusions that she knew everything about sleep apnea. All I needed to do was explain what I wanted and why and she was more than happy to write the prescription the way I wanted. She had no dog in that fight, so to speak. It didn't hurt her ego like it would a sleep doctor who, in theory, should know more about it.

[Gerald]

Jim......

There's a big difference between you and them.......and here's the deal:

You are a true "mechanic"....and they aren't.

Medical school is based largely on rote memorization.....and that's not your style. Things have to make sense to you....you are one of the blessed few who can connect the dots.

Be proud...........

Gerald

[Slinky]

Ozij is right, we really can't expect the sleep doctors to know every option on every brand and model xPAP out there. And I truly respect a sleep doctor who admits that. BUT WHAT TORQUES my jaws is that if they can supposedly score a PSG they sure as h*ll ought to be able to understand the data and even graphs from any of these xPAP brands and models.

Look, I was recently at a sleep clinic at a very respected multi-discipline heath clinic. I signed up for my appointment, someone came out and asked for my xPAP and took off w/it w/no discussion. I was using the S8 ResLink, the ResLink doesn't use the same data card or even the same data module as the regular Resmed data trasnfer card. The ResLink is a bit bulky and can't be left on the xPAP when packed in the carrying case. So the ResLink was in its own case in the outside pocket of the VPAP Auto's carrying case, as was the module for the regular data card AND the "null" module as well.

They just brought my VPAP back to me and said they couldn't download my data and walked away. I have no idea if they didn't look in the outside pocket and find the ResLink, didnt know how to use the ResLink, didn't have a new enough version of the software or what.

THEN when I TRIED to ask question the sleep doctor about some of my downloaded data that I'd brought w/me I got the long tirade about the unreliability of data from fully data capable xPAPs. At that point, giving the sheister a good kick in the shins was sounding soooooo tempting!!! Talk about a closed mind! Talk about "I" know best and you don't know diddley squat attitudes!

There are some good sleep doctors out there .... but d*mn they sure seem to be one RARE COMMODITY!! My impression is that, YUP, MOST of them DO want us to stay totally stupid, ignorant and in the dark.

[That Sleep Tech]

I'm not speaking for everyone, only myself. I know that where I work I am not allowed to give any medical advice or talk with a pt about their results. I simply do the hookups, data acquisition and CPAP titrations when needed. I'm not sure why anyone would not want to give you proper information. It seems that giving someone wrong information will at the least interfere with a person's therapy, if not worse.

That being said. The medical staff which you talk to might not want but most likely not be able to give out any information. The main reason is being sued. Everyone is afraid of malpractice. Especially if a patient is deviating from protocol or choosing self treatment. If you do something wrong and irreparably injury yourself because you took the advice of a medical professional or you misunderstood his/her instructions then you have the right to sue. And, people like to sue. So, unless if you dislike your job or just like being sued, you make sure you are carried on the malpractice insurance. Also, you make sure you have a medical degree. Because, if you do not and give medical advice you can be sued for practicing medicine without a license. So come morning most of my answer to my patients sound something like, "Please make an appointment with your primary care, he will be more than happy to answer your questions."

[DreamStalker]

Well, I'm not a psycho analyst or one of them there smart fellers, but me thinks if they have that kind'a attitude, then they are insecure about their own expertise and are afraid to let anyone find out ... especially their patients. The old "data is unreliable" excuse is even worse since it implies that they are not only insecure, but quite likely also incompetent. Even if the data is unreliable, it should at least let the doc know if the patient is having massive system leaks or if the machine is even set up with correct pressure settings.

[Slinky]

Frankly, ThatSleepTech, I don't know if you've noticed but you sleep techs get off pretty lightly here. We seldom see a gripe about a sleep tech. So as a profession you guys/gals must be doing something fairly right. In fact, I've seen it said that the RPSGTs are the TRUE heroes of the sleep profession. Its the sleep docs and the local DME suppliers's RTs who bear the brunt of our disgust, disgruntlement and complaints - almost always deservedly so.

[DoriC]

ozij, what you said makes perfect sense to me. Also as a matter of fact, my son is a physician since the early '90s( Board-Certified Internist geared towards holistic medicine) and he doesn't remember ever taking a course just on sleep apnea, just general sleep disorders,etc. Our sleep specialist is a primary Pulmonologist who told us he has gone to a few conferences on SA and taken a course or two, and our Internist and Cardiologist admit they don't know much of the mechanics of the therapy, just on its impact on their patients' health. That my 2cents.

[rested gal]

they hadn't bee able to find the sleep study reports that had been faxed to them more than a week earlier; when the study was found, the doc said I wouldn't understand the complexities of the report and that the only thing I should concentrate on is doing what I was told.

Whoa!!!!!!!!!!!!!!!!!!!!!! What a patronizing, condescending, arrogant..... well, I could keep going, but I'll "whoa" myself there.

me thinks if they have that kind'a attitude, then they are insecure about their own expertise and are afraid to let anyone find out ... especially their patients. The old "data is unreliable" excuse is even worse since it implies that they are not only insecure, but quite likely also incompetent. Even if the data is unreliable, it should at least let the doc know if the patient is having massive system leaks or if the machine is even set up with correct pressure settings.

I agree, DreamStalker. "Even if...."

There certainly is useful data (the leak data you mentioned, for example) that should be looked at in the download from a treatment machine that records more than just hours of use.

I have no problem with the concept that the job of doctors is to diagnose and prescribe treatment. And no problem that doctors in general are not expected to know much about the nuts and bolts of actual treatment machines.

Ozij is right, we really can't expect the sleep doctors to know every option on every brand and model xPAP out there. And I truly respect a sleep doctor who admits that.

I agree.

I also can respect that a doctor, or anyone in the sleep field, can genuinely not have a very high opinion about the usefulness or accuracy of data from our treatment machines, when they are used to looking at the much, much, MUCH more extensive data they get from PSG sleep studies. I think their outright dismissal of any/all data that comes from our machines is misplaced, but I can understand why many would scoff at our machine reports.

What I have a BIG problem with is the kind of demi-god attitude Mike's doctor displayed.

This kind of attitude and statement by any doctor, absolutely burns me up:

the doc said I wouldn't understand the complexities of the report and that the only thing I should concentrate on is doing what I was told.

Whewwwwwwww.

I don't doubt that most of the people a doctor sees in the course of the day are not interested in really knowing much other than, "Doc, can you fix it?" But when an obviously intelligent person like Mike asks to see items (the report from his sleep study) that are part of his medical record, and is insulted in that way... that's a doctor with a bad attitude, imho. Perhaps stock market losses are giving that doc an even shorter fused temper than usual!

[roster]

............

The response I got in my first visit to a highly regarded sleep doc here in Orlando...........................

Hmmm? Highly regarded in Orlando. Are his initials MM?

[Debjax]

THEN when I TRIED to ask question the sleep doctor about some of my downloaded data that I'd brought w/me I got the long tirade about the unreliability of data from fully data capable xPAPs.

Contrast that with my doc, who not only wants the data, but told me what the reports meant and how to read them....We go see him a week from tomorrow, I'll be taking hubby's printouts for the whole month...I'm betting he goes over them very carefully, esp. aftet the pressure bump this week....

[yorkiemum01]

Suppose I was one of the lucky ones......as my primary Dr is well versed in sleep medicine, and
referred me to a very good specialist. He'd come highly recommended in my book, communicates
clearly with the patient and listens to concerns.

[Debjax]

On a slightly humerous side note....even our doctors have to put up with crap sometimes...at our last visit, our sleep doc was telling us about his son, who had apnea. He told the pediatrician "he needs a sleep study, he has apnea." He was shocked when the pediatrician told him "no, he doesn't. children don't get apnea." He was telling us this and laughing, saying "he's telling ME, the sleep disorders specialist, that children don't get apnea and my son did not have it." He had the boy scheduled, he had pretty severe apnea, and his tonsils took a permanent vacation. He's waiting for 3 months, then going to have him tested again....