The Big Lie

GoofyUT wrote:Brava KROUSSEAU!!! Excellent and thoughtful post.

I find this Big Lie nonsense to be frightening. Blatant dogma sprinkled with unsubstantiated glittering generalities. Sort of like Mein Kampf, when you come to think about it.

Chuck

Chuck,

I'm going to AGREE with you! (although maybe not in the context you meant)

Actually, Mein Kampf (the words) mean "My Struggle".
By the way, you didn't put quote marks around the words to imply the title of the book by Adolph Hitler.

BUT, that's what most of us have dealt with in various parts of our therapy.

MY STRUGGLE:
With my health (or lack therof).
Getting into a sleep study.
Waiting for the results of the sleep study to come back.
Getting proper diagnosis.
Dealing with sleep doctors.
Dealing with insurance providers.
Dealing with DMEs to get the equipment we want.
Dealing with the equipment after acquiring it.
Dealing with mask leaks.
Dealing with humidifier settings.
Dealing with feeling like our therapy is NEVER going to kick in.
Dealing with finding the right mask.
Dealing with a machine that may not be working or set up properly.
Dealing with traveling with the equipment.
Dealing with employers and the potential loss of a job.

I could probably go on, but I think you get the idea.

Yes, this IS my struggle......and I feel quite confident that I can administer my own therapy.
The "Big Lie" (spewed out by the people who are trying to get into our wallets) IS nonsense and CAN BE frightening to the uninformed. THAT'S why these forums exist and why so many people say (something like) "Gosh, I wish I'd have found this forum earlier....I've learned so much!".
Like Goofproof (Jim) said: "Follow the money". It's the big corporate entities who are buying the politicians that are sprinkling the blatant "dogma" on us. Actually, it smells more like dog sh*t!......

Best wishes,

Den

Den-

Thank you for your thoughtful post. I actually agree wholeheartedly with you about the struggle that we all (those who have enterred the adventure called OSA/CSA) face. And, I agree wholeheartedly about the incursions that corporatized medicine have made on each of our lives. There are many of us who are tremendously concerned about the erosions of quality of care and of ethics that corporate profit-making has demanded of the practice of medicine.

The one area that I think that I agree with you most about but we might differ somewhat is that, I believe that we all must take final ownership and responsibility for our care, but I'm not sure that we all have the competence to administer our care. I know that, with the demands of my life, I haven't been able to study the theory and technique of each and every body system that OSA affects. So, I found a fella who has studied this enough and demonstrated that to me, that he's earned my trust. And then, I pay him lots to administer my care, just like I'd pay any other servcie-providser to administer the fix for any other problem I had in my life. Like a plugged up toilet, for instance. I'd find a plumber trhat I trusted and then I'd pay him/her to get the problem fixed. At any time that I began to doubt that my pulmonologist or my plumber was performing in a way worthy of my trust, I'd fire his/her *ss, and find another that I believed I could place my trust in.

Now, I agree that corporate medicine has dealt another card into that mix, and I believe that we all need to be aware of that as we make our decisions about placing our trust. But ultimately, because we can't study everything, we still will need to hire someone who we think has, to administer our care. And them trust him/her enough to believe that we can demand everything we deserve from them as a paying customer. And settle for nothing less.

Does this make sense???

Thanks again for your provocative post.

Chuck

P.S. I left the quotations off of Mein Kampf intentionally. I meant to refer to the prototypical vitriol, not the work of Hitler.

GoofyUT wrote:There are many of us who are tremendously concerned about the erosions of quality of care and of ethics that corporate profit-making has demanded of the practice of medicine.

I have no doubt this is true, Chuck. I reached the conclusion long ago that about 99% of folks are truly sincere and have good intentions. However, good intentions, alone, often don't accomplish much. As a patient, I'm not overly concerned about WHY my physician's ethics might be compromised, or WHY his quality of care is low, or WHY he charges the exorbitant fees he does. (These are all issues you raised in one single sentence, Chuck, so please don't tell me I'm being inflammatory or vitriolic in repeating them.) As a patient, I care WHAT his ethics are, WHAT his quality of care is, and WHAT his fees are. The WHY's of this are an issue which physicians need to address amongst themselves.

What I'll ask you though, since you are "tremendously concerned", as you say, about these issues is what you personally do to combat them.

GoofyUT wrote:The one area that I think that I agree with you most about but we might differ somewhat is that, I believe that we all must take final ownership and responsibility for our care, but I'm not sure that we all have the competence to administer our care.

Interesting statement, Chuck. So, if some of us aren't capable, who then is? And, more important, who decides who is capable and who isn't capable. Is this justification for, well, the "Big Lie", for instance?

GoofyUT wrote:But ultimately, because we can't study everything, we still will need to hire someone who we think has, to administer our care. And them trust him/her enough to believe that we can demand everything we deserve from them as a paying customer. And settle for nothing less.

I'm in complete agreement with you, Chuck, and have said so many times here. You should interact with a physician as you would with any other business person, and treat that physician as you would any other business person.

But in reality, as a practical matter, it is not always so easy. We've already seen, in just this thread, that physicians can get explosive when confronted. Yet, some feedback mechanism is clearly needed in many cases. Perhaps you might know, Chuck, how we, as individuals, can provide the necessary feedback to our healthcare providers so they can improve their quality of care, their ethics, and also lower their fees. (Just reiterating the points you yourself raised, Chuck.)

Regards,
Bill

GoofyUT wrote:I believe that we all must take final ownership and responsibility for our care, but I'm not sure that we all have the competence to administer our care.

We're talking CPAP therapy here, not brain surgery.

Unless you are mentally impaired, you are competent to read your own data and change your own pressure. A child could do it. DMEs would like us to think cpap therapy is highly complicated and dangerous and requires special skills to manage. That simply isn't true. Thank goodness the mystique has been removed. Thank goodness the good people on this forum intend to keep it that way.

I'm going to enlarge on something I read on this forum somewhere in the last 4 months as it is a good analogy.

The most diligent diabetic patients test their blood sugars multiple times a day and adjust insulin dosages multiple times a day. If they are taking long acting and short acting insulin-they have to figure out which insulin to increase or decrease. How to predict insulin needs when their glucose level is high but they know they will be playing tennis or going for a long bike ride. It gets quite complex for some people who want to maintain their glucose level as near normal as possible. Doctors applaude them, order glucose meters and consumable glucose testing supplies for years, insulin, syringes-I don't know how much it all costs?

We want to optimize our OSA treatment. Just as no one insulin dose fits all diabetics day in & day out-one pressure levelo does not fit each person with OSA day in & day out. Our PAP devices are an every five year or more expense, a mask every 6 months is less than the cost of test strips. We want to be involved in the day to day management of out care. Yet we have to buy the equipment that would let us do that out of pocket. You would think we want to do major surgery on ourselves.

GoofyUT wrote: ....I believe that we all must take final ownership and responsibility for our care, but I'm not sure that we all have the competence to administer our care.

Chuck,

No real disagreement here. I think the first one is a "given", and depending on the age and mental wear-with-all of the user, the second part of that statement is true, too.
I think Rested Gal's post yesterday about her friend Margie brings out some "issues" (problems) that some of the users have to deal with and the reason for the passionate postings by those of us who feel the system is broken. For one thing, the machine they gave her was (apparently) not set up quite right and they (apparently) didn't include a humidifier (considered essential by almost everyone these days).
This is where I have a REAL problem with the "professionals" administering care.....too many are incompetent.
In my own case, my sleep doctor (I believe) fell into the "body-type mentality" ("You've got a big neck, so you need LOTS of pressure.") and prescribed me at 18 cm. I very soon (less than an hour) changed it to 10 cm. and did quite well with that pressure......and of course I have monitored my therapy from day one. It was only in mid-March of this year that I bumped it up to 12 cm. as I started to see a few more apneas and hypopneas creeping in.
I strongly believe (as most here do) that the more knowledge a person gains about their affliction and the mechanics of their therapy, the better off they will be.

Best wishes,

Den

GoofyUT wrote:I haven't been able to study the theory and technique of each and every body system that OSA affects. So, I found a fella who has studied this enough and demonstrated that to me, that he's earned my trust. And then, I pay him lots to administer my care, just like I'd pay any other servcie-providser to administer the fix for any other problem I had in my life. Like a plugged up toilet, for instance. I'd find a plumber trhat I trusted and then I'd pay him/her to get the problem fixed. At any time that I began to doubt that my pulmonologist or my plumber was performing in a way worthy of my trust, I'd fire his/her *ss, and find another that I believed I could place my trust in….

…And them trust him/her enough to believe that we can demand everything we deserve from them as a paying customer. And settle for nothing less.
Chuck

Linda3032 wrote:As someone else wrote, doctors are simply human. Many lawyers, car mechanics, salespeople, etc, etc, etc, have the same indifferent attitudes that many doctors have. But they don't hold your well being in their hands.

Chuck,

I am not a homeowner but somehow I think that hiring and firing a Sleep Doctor within the framework of corporatized (sic) medicine and within the context of various insurance plans bears little resemblance to hiring and firing a plumber, mechanic, PC Geek (might be closer), etc. Any of us has a lot more recourse in dealing with an incompetent, problematic or fraudulent service provider in almost any industry when compared to the health care industry. In my managed care plan which was chosen for a whole variety of reasons and which remains the best choice for me at this time it is virtually impossible for me to fire any of my physicians in an efficacious manner. I pretty much have to take what I get. If I leave that plan and go for a plan with greater choice the costs and time away from work to deal with my medical issues skyrocket. I have access to one of the higher rated sleep centers in the Midwest and, in general, they suck so where does that leave me? I don’t know about you but I don’t pay my Sleep Doctor other than through my insurance plan whereas when I hire a other service provide I negotiate with him or her directly (automobile insurance [there it is again “insurance”] repair excluded. It’s easy for me to fire my barber and my mechanic, not so easy to fire my health care providers unless I were to win the lottery or strike it rich somehow. If you have the means to interview, select, hire and fire various medical practitioners then you are much more fortunate than many of us.

The comparisons to diabetes are apt and meaningful. From what I know this is an area where self care, augmented by primary care physicians, endocrinologists etc. is highly encouraged. A syringe, insulin bottle, blood sugar tester and diet sheet are not thrown at the patient with 10 minutes of consult, at least as far as I know.

GoofyUT wrote:David-
So David et. al., you go. Keep it up. But as long as your comments remain unsubstantiated, I'll be right here in your face. Give some facts for folks to consider that will allow them to make informed decisions, and I'll applaud you every time as well.
Chuck

You asked for facts and I can not say I am a researcher who has gone through study after study. My facts come from my experience which has been quite wide as my parents suffered from various ailments and as they aged, as my best friend’s mother aged, as my sister fought diabetes and died from sepsis contracted through a hospital incurred infection. I have watched at least four elderly folks struggle with dementia quite likely induced by a cocktail of various meds with no thought of “quality of life” and the attitude of “Doctor knows best” but 4 or 5 treating physicians all disagreed and “knew best” (one of these was my father). I tried to act on his behalf and ran into numerous roadblocks and the last 1.5 years of his life were really pretty miserable.

These are my facts. My own experience has not been great but at this point in my life, with my OSA, I can pretty much fend for myself. I will be honest though that the idea of more problematic health issues as I age and being more and more dependent on the health care system as it exists now scares the Bejesus! out of me. Being responsible for one’s own care, as much as possible, is necessary but often extremely difficult. Like someone said, get every piece of paper, touch base multiple times, assert oneself, stand up for oneself, double and triple check and become a full time health administrator yourself. I am a rotten administrator, always have been. Not everyone is equally gifted at these activities. Make a wrong step and it is easy to get screwed! I haven’t even gotten on the subject of the pharmaceutical companies and dealing with medications.

So – nice ideas in theory but it all remains fraught with risk because there are so many different layers and gatekeepers in the process. Once in the mill there are innumerable and untold fingers in the pie that have some impact on your care.

Bill has continued to insist that the “Big Lie” is that only a physician can ensure optimum care for this condition (and others) and I agree with him that this is not true. All three of my Doctor’s and the Sleep Center’s RT have been surprised by what I have learned and the depth of that knowledge and the PCP said – “you have more time and a greater self interest in mastering this knowledge than I do – good for you”. The “Big Lie” exists to protect those piece’s of the pie that other folks believe should belong to them.

Murkk wrote:Our system is geared towards people who want a quick fix, and don't want to hear things that they don't want to do. It took over a year for my step brother to convince me to go to a sleep clinic... I thought I was fine. I know three people who have been diagnosed with sleep apnea, and none of them even bothered to get the machine. They are all too happy to take anti-depressants and other quick fix drugs though. Just take a look at the compliance rates for CPAP therapy, even with the incredible success rate it has.

Based on the facts of my personal experience this attitude on the part of patients is encouraged by many practitioners. One of the things we forget is that the “business” is piecework. The more people moved quickly through the system the lower the marginal cost is and the higher the profit margin. Part of the “Big Lie” is that this speed and systemization is part of the effort to lower our costs – yeah, right!

NightHawkeye wrote:

GoofyUT wrote:There are many of us who are tremendously concerned about the erosions of quality of care and of ethics that corporate profit-making has demanded of the practice of medicine.

I have no doubt this is true, Chuck. I reached the conclusion long ago that about 99% of folks are truly sincere and have good intentions. However, good intentions, alone, often don't accomplish much. As a patient, I'm not overly concerned about WHY my physician's ethics might be compromised, or WHY his quality of care is low, or WHY he charges the exorbitant fees he does. (These are all issues you raised in one single sentence, Chuck, so please don't tell me I'm being inflammatory or vitriolic in repeating them.) As a patient, I care WHAT his ethics are, WHAT his quality of care is, and WHAT his fees are. The WHY's of this are an issue which physicians need to address amongst themselves.

I also agree with him that the basis of trust is performance and exhibited adherence to appropriate ethics is critical. From my point of view that trust is broken and people “endure” the process.

NightHawkeye wrote: But in reality, as a practical matter, it is not always so easy. We've already seen, in just this thread, that physicians can get explosive when confronted. Yet, some feedback mechanism is clearly needed in many cases. Perhaps you might know, Chuck, how we, as individuals, can provide the necessary feedback to our healthcare providers so they can improve their quality of care, their ethics, and also lower their fees. (Just reiterating the points you yourself raised, Chuck.)

There is no means that I know of to hold the entire provider chain accountable. Where should this accountability be? Who is the customer of the DME – the Doctor, Insurance Company or me? Who should the DME be accountable to? This diffusion of responsibility means that all sorts of “silliness” and profit taking are possible. Within the framework of my insurance I have no means, other than by raising the noise level, to make the DME more accountable. I step out of that framework and spend my own money with regards to CPAP supplies but they really don’t care about that, there are plenty of other folks to make money off of. Who is the customer of the Sleep Center? My Doctor or me? Who are they accountable to? How do I hold them accountable, how do I provide them feedback? My last sleep study was ridiculous – the tech had me in bed from 11pm to 9:00am, I am convinced, beyond a shadow of a doubt, he fell asleep. It felt long but time seems distorted in those circumstance anyway so I “endured”. I think the place to start is here, on this forum, but then we are accused of “practicing medicine without a license”.

This has been a good thread for me. It has reaffirmed my responsibility to myself to do the best I can within the system and to be more conscientious in asserting myself but it has done nothing to change my mind about the profound defects within the health care system and the willful blindness of many of those involved in that system to its defects. Even my PCP shrugs his shoulders and rolls his eyes.

Regards

David

Just out of curiousity, why are people so convinced that anyone who is making any money while dealing with healthcare issues is a horrible person?

Why are people convinced that making a profit and providing quality care are mutually exclusive?

B

Bingo wrote:Just out of curiousity, why are people so convinced that anyone who is making any money while dealing with healthcare issues is a horrible person?

Why are people convinced that making a profit and providing quality care are mutually exclusive?

B

GOOD GRIEF!!! < smacks forehead >

I think it's the AMOUNT of profit that is troublesome. I need a cpap machine. I can order one online and pay $500.00. The manufacturer makes a profit and the online vendor makes a profit.

If I order the very same machine through a DME, it costs $1300.00. The manufacturer makes a profit and the DME makes a profit.

Why am I paying so much more through a DME than I am if I buy online from cpap.com? Why is the DME profiting so much? So they can come out to my house and press buttons I can press myself?

That's what's so hard to swallow. I used to assume I was wisely paying for service that no one else could provide. Now I realize I was ignorantly paying for service I didn't need.

Bingo wrote:Just out of curiousity, why are people so convinced that anyone who is making any money while dealing with healthcare issues is a horrible person?

Why are people convinced that making a profit and providing quality care are mutually exclusive?

B

I personally have no problems with providers making a reasonable profit if, big if, they provide quality care but based on my experience they often seem to be mutually exclusive. I believe, no facts but observation, this is because the market feedback loop is broken. Like I implied earlier, I can walk away from the plumber, take him to small claims court or sue him if he breaks a promise or contract, I can report him to the BBB and make sure none of my friends and neighbors patronize him. Doing all of this is not all that difficult, the mechanisms are clear, not cost prohibitive and generally effective. He has an incentive to provide "quality" in his service. He goes out of business if he doesn't, makes a good living, even gets rich, if he is good. If he is a scammer he goes to jail (unless he is "connected").

Health care providers seem to get rich regardless of quality. Even if they don't get rich the feedback loop, if it exists, just doesn't work effectively. The scale and complexity of the system seems to make accountability almost impossible. Besides this (my liberal leanings again) it's life and death for many, consequently I am willing to even account for a subsidy in my costs but I would like to see accountability for a real return - "quality" at a reasonable cost.

David

Anonymous wrote: If I order the very same machine through a DME, it costs $1300.00. The manufacturer makes a profit and the DME makes a profit.

I have not seen a case where an insurance company contracted for anywhere near that amount of money.

Even if there was, remember - this is the INSURANCE company determining that price - NOT the Equipment Provider.

An Equipment Provider could bill for virtually any dollar amount they wanted - it will not make a difference. All they will be reimbursed is what the Insurance Company has contracted. And generally only 80% of that amount anyways.

Typically, the range will usually be in the 700-800 dollar area.

By the way, although no one brings it up, our very host here ALSO gets paid those same amounts. No one refers to him as "evil" either.

What is the difference? Again, WHY is it so wrong for someone to make a profit from dealing in healthcare equipment?

I have consistently treated those involved in my healthcare as a partner, which they are. I have consistently treated them with high levels of respect and courtesy. I have dealt with these people with the understanding that I am generally meeting them when I am at my worst - I am sick, I don't feel well, I have some sort of problem or else I would not be needing them to begin with!

And amazingly, I have never once had anything but exceptional experiences with them.

B

Bingo wrote:I have consistently treated those involved in my healthcare as a partner, which they are. I have consistently treated them with high levels of respect and courtesy.

As we all do. The problem is when they don't reciprocate.

I'm glad Linda got that post in ahead of mine.
I just happened to run across this thread awhile ago and thought it kind of fit this discussion (price/quality/service).

http://www.apneasupport.org/about4571.html

We've also seen similar comments on this forum, too.

Den

Snoozin' Bluezzz wrote:I personally have no problems with providers making a reasonable profit if, big if, they provide quality care but based on my experience they often seem to be mutually exclusive.
...
I believe, no facts but observation, this is because the market feedback loop is broken.

An interesting viewpoint. It's always looked to me that the chain would basically be like this:

(Sleep Lab) ---- Prescribing MD ------- Equipment Provider
\ /
\ /
Insurance Company

Where none are neccessarily "above" the other, but they all have to work together for the cycle to operate.

So if there was a problem with the Insurance, I might check with both the doctor and the Equipment Provider.

Or if there was a problem with the equipment provider, you could go to the Doctor.

Remember - they all depend on each other. If too many doctors feel an equipment provider is no good, that provider will go out of business. I've seen at least a dozen in the past 5 years just in my area alone go out of business. Between insurance cuts, massive paperwork requirements and unhappy doctors, it happens.

However, if too many Equipment Providers stop being willing to accept orders from a particular doctor because they are much too difficult to deal with, or won't submit the paperwork required to get equipment reimbursed - that doctor is going to find their ability to take care of patients is very tough!

The same goes with insurance companies - if too many doctors or equipment providers refuse to deal with an insurance company - those patients are going to quickly drop thier coverage. For example, in our area there is a particular insurance that is notorius for not paying claims in anything less than a year. If you get your CPAP through that insurance, it will generally be 14-18 months before they pay the claim. If you go in for an office visit, it is usually at least 12 months before they pay the claim.

Patients with that insurance have horror stories about trying to find a SINGLE doctor who will accept that insurance. There is 1 equipment provider in a 3 county area who will accept that insurance.

So there is accountibilty there.

Does that make you feel ANY better now when you've apparently had difficulties in the past? I'm willing to bet it doesn't!

However, going forward perhaps it will.

B