Should I be up front with Sleep Doc???

[mallen4258]

Thanks to all here at Cpaptalk.com I have managed to educate myself on treatment for OSA!!! After reading from all here, my experience with the medical establishment has been at or SLIGHTLY better than average. This meaning that information has been short and peferably directed to the non-informed, however I have been able to get the equipment that I specified. My question is should I be forthcoming with my sleep doc?? I was prescribed CPAP 8, and after 2 months i have since determined that Auto 9-13 CFLEX 1 is the best so far. I started with an AHI of 7.5-10 at CPAP 8 and now with Auto 9-13 an average AHI of 2.1 (and slowly improving, best AHI 1.1). As always your input is appreciated!!!

[Slinky]

It sounds like you've done very well and made good use of the information available in the forum. Good on you. Sit tight until you see your doctor again and see what he has to say before volunteering any information regarding your therapy settings. When asked or the subject is brought up is the time enough to advise him of what you did and why.

[LinkC]

Absolutely!

1. Don't you expect him to be "up front" with you?
2. His job is to help you get the best treatment. Any way you can assist in that makes things that much better.
3. How would you expect him to suggest improvements if he doesn't know the "real" treatment parameters?
4. He should welcome your input. It makes his job easier and he gets paid the same. (If he DOESN'T appreciate your input, you might want to reconsider your choice of doctor.)

If you are getting better results with your settings, by all means show him the reports. Your original prescription was based on a one-night sleep study under abnormal conditions. That's ALL he had to go by. Now you have some real-life data, and proof your numbers work better.

(Your DME is another story.... Lie to THOSE b**tards as often as you can!!! )

[jnk]

My opinion is that it depends on your definition of "up front."

The doc likely wants to know that you are using the machine and that it is helping. Some docs want details beyond that, some don't. Only you can judge what your relationship is with your doctor and what is in your best interests beyond that.

I respect my sleep doctor enough that I would never set out to mislead him. That is my relationship with him. I would never hide anything from him I think he would need to know or would want to know. But I might choose not to make him aware of something he would feel obligated to make a record of and that he might actually prefer not to know and that he would never ask me.

So I agree with Slinky that (1) lying to the doc is a bad idea but (2) there can be many reasons to be judicious about going out of my way to volunteer information the doc has not asked me for, since he may not want to know.

[ozij]

I would sayit the LinkC has - but he's said it already.


O.

[BlackSpinner]

By being up front with your doctor you are helping educate him as to what he can expect of his patients and maybe the next person will be helped better. You owe it to the board to feed back as much as possible so the medical establishment will get their ass in gear and treat OSA more like diabetes.

[DreamStalker]

I too agree with LinkC ...

However, I would add that if after being up front with your doc, your doc does not approve of you taking charge of your treatment ... then just fire your doc

[LinkC]

he might actually prefer not to know

What aspect of your condition/treatment would your doctor possibly "prefer not to know"?

That you have a data reader and software? So. He should be delighted you take an active role.

That you changed your settings? So. If the data backs up your decision, good! If there's a reason NOT to, and you didn't think of it, he might keep you from making a mistake. Either way you win. But if you hid it (thinking he wouldn't want to know), well...

And if he truly doesn't "want to know", why is he still your doctor?

[jnk]

he might actually prefer not to know

What aspect of your condition/treatment would your doctor possibly "prefer not to know"?

That you have a data reader and software? So. He should be delighted you take an active role.

That you changed your settings? So. If the data backs up your decision, good! If there's a reason NOT to, and you didn't think of it, he might keep you from making a mistake. Either way you win. But if you hid it (thinking he wouldn't want to know), well...

And if he truly doesn't "want to know", why is he still your doctor?

Fair questions. And I know my postion is left of center on this.

I guess my problem is that my view of the whole system is a little off. To me, sleep docs only partly work for us. In some ways, they work for the insurance companies. Not by choice, but they do. They are making little ethical decisions about how they present things to insurance and to all the other medical professionals around them. And the docs have a lot of power over what gets communicated to other doctors and medical professionals about us. So, in my mind, there is a little dance that takes place where everyone has a role to play in how they phrase things in being as respectful, smart, and careful as it is prudent to be with matters of honesty.

The relationship between medical doctor and patient has to be based on trust. But the way the system is set up means that an effective doc today mostly has to be good at working the system for you and giving you hints about how to work the system for youself as he does it. That has nothing to do with medicine. It is the business end of things. But is a large part of being a doctor today in the US, imo.

Anyway, to my mind, I want a sleep doc that knows how to cover my hind end as I cover his, as we both work to get me what I need. Part of that partnership involves an agreement on approach and his presenting himself as someone willing to cooperate with me and my presenting myself as someone willing to cooperate with him. I don't want him to be a dictator in the partnership, and he doesn't want me to be a dictator either. That partnership can get complicated. But I don't want to get the reputation of being an uncooperative patient who takes things into my own hands and doesn't follow instructions well. (Even though that description might not be far off the mark. )

For me, that meant that I called my doctor and told him BEFORE I made adjustments to my machine. (OK, technically, right after, as in the next day, since I made the change in the middle of the night.) I wanted to know he was on board with my doing that. He was very good at letting me know that he didn't have a problem with it but that he was not going on the record with having made that statement. He does, after all, have a reputation to maintain in an industry that is heavy on peer pressure and light on thinking outside the box. I'm sure he wouldn't want me to post his name on this board as a doctor who doesn't care if all his patients get told to take the machine and then ignore the RT at the DME. But if my choice had been to make changes to my machine without his approval, I might not ever have told him, since he seems to be someone who makes the diagnosis then expects treatment to be supervised by others.

Some here live in a small town and have few choices about which doctor or center to deal with. I can see situations in which a patient might choose to maintain a reputation of being cooperative, regardless of how thin the veneer is over their true feelings about DMEs, RTs, and the industry as a whole.

So my main point is to do what is in YOUR best interest as YOU deal with YOUR doctor, knowing the system is a little more complicated than spilling your guts to everyone on everything you feel or do.

I agree that in a perfect world in a perfect situation, your doc should know everything you do. And I think it is dangerous to hide information from your doctors. But that relationship between doctor and patient doesn't happen in a vacuum, and I think my doctor trusts me more when he knows I understand his knowing wink about not making him a partner in what many in the industry wrongly consider crimes.

The pressure coming from the machine is not the only pressure many patients have to deal with. That is why I say: Be honest. But be smart, too. If you think the doctor is useful to you enough to help you find a good pressure on your machine and he is comfortable doing it, then by all means go for it. But if not, don't force him to play along with something he might not be comfortable with, if you are doing fine on your own tweaking your therapy. That's all.

Have I sufficiently defined "is"?

jeff

[Guest]

Some doctors 'prefer' not to be bothered by patient input. After all, the doc is God and doesn't want you stepping on his toes.....no time for your 'nonsense'.

[jnk]

Some doctors 'prefer' not to be bothered by patient input. After all, the doc is God and doesn't want you stepping on his toes.....no time for your 'nonsense'.

OK, him I would fire, right after I explained to him my list of reasons for my having come to the conclusion that he was not, in fact, God and had given him full opportunity for rebuttal to prove to me otherwise.

[LinkC]

Some doctors 'prefer' not to be bothered by patient input. After all, the doc is God and doesn't want you stepping on his toes.....no time for your 'nonsense'.

Then why would you hire them? Or keep using them once they showed that attitude?

Sorry, but life's too short and my health is too important to deal with a doctor I can't trust or be completely open with.

Or one I felt I had to hide my identity from when criticizing him...

[LinkC]

OK, him I would fire...

There's something we agree on!

[jnk]

Some doctors 'prefer' not to be bothered by patient input. After all, the doc is God and doesn't want you stepping on his toes.....no time for your 'nonsense'.

Then why would you hire them? Or keep using them once they showed that attitude?

Sorry, but life's too short and my health is too important to deal with a doctor I can't trust or be completely open with.

Or one I felt I had to hide my identity from when criticizing him...

I totally respect your position, LinkC. It makes more sense than mine.

But, using myself as an example, my PCP has VERY different ideas from my sleep doc. I could take sides and call one of them an idiot to his face, but I don't see how that helps me. They are both useful to me at doing what they do. I'm willing to give each of them a little slack in some things, and I believe that makes them comfortable giving me a lot of slack. My doctors and I have different opinions on some things, but I temper what I say out of respect and because I like other things about them that are more important than how they feel about patients' adjusting pressures.

I would have to be pushed pretty hard to tell a doc "look, jack, this is how it's gonna be--I am exclusively in charge of my machine and will adjust it any old way I see fit, and you have zero input on the subject, got it?!" That is pretty close to my position. But I don't see how it helps me to phrase it that way to a doc, just to be able to tell myself that I was being "honest" about it.

[mallen4258]

I would like to explain what I meant by "UP FRONT". While I would never lie to my physician, I might NOT freely volunteer some information that he might feel obligated to censor. My sleep doc is also my Pulmonologist (and an excellent one at that), he is one of a large Pulmonolgy group. This group has seen the benefits of offering sleep diagnostics (mainly to their bottom line). They have opened 2 separate sleep clinics, the main one in the same building as their pulmonology clinic (a large medical office building next to a large hospital), they also have 2 overnight sleep study facilities. My Pulmonologist (sleep doc) is likeable, but did not have answers for fairly simple questions about my equipment and really did not offer explanations about my studies, but instead wanted to talk about my line of work. At the conclusion of my 1st visit after being under treatment for almost 2 weeks, he did not want to change anything in my treatment (CPAP-8, I had asked about going to auto). He told me he wanted me to see their equipment "guru" on my next visit to answer the "technical" questions that I had asked. So on my next visit, I will see a Dr. that I have never seen before and following the line of treatment suggested I would STILL be at CPAP 8 and would be there for another month (over 3 months). At this rate it would have probably taken a year (OR MORE) to get to the point in treatment that I am now. Again, thanks to many here who have helped educate me, first on what type of equipment to get AND for information as to "take charge" of my own "fate" in my treatment of OSA.

Sleep study AHI 65.1, REM AHI 101.9, Min 02 saturation 75%

Current 7 day AHI avg 2.1 (getting better each week, best AHI 1.1), Min 02 sat 90% - 92%, avg 02 sat 96% - 97%

THANKS TO CPAPTALK.COM!!!!