UNIVERSAL SLEEP APNEA PATIENT BILL OF RIGHTS

[robysue]

1) Any patient who undergoes an in-lab sleep test should be provided with a CD containing a copy of the raw data at the end of the test AND a complete copy of the written report (including the summary graphs) as soon as it is available; at the latest this should be at the next follow-up appointment with the doc.

Wicked good idea! Not that many would benefit from the raw data, but those that could should have it.

I put this at the top of the list because I've been routinely provided with copies of other medical studies either with or (even better) without my asking for the. The point is that the patient needs the raw data if the ever need to consult with a doc who did not do the original diagnosis. Without that raw data, you are either relying on the original lab tech's scoring and the original doc's interpretation OR you are put in the position of having to start over with a fresh study.

[robysue]

Ok, I know I am living in fantasyland but I have been wanting to say this for quite awhile and here is my chance.

Get rid of the word, compliant. I think it is demeaning and implies that patient is at fault if he/she didn't follow the physician's advice when there are a million good reasons why the person didn't take the advised actions.

Also, the word implies obedience which I think is very insulting.

49er

Seconding this sentiment 100 times over. And along with it, get rid of "Patient must fail CPAP/APAP before being moved to bi-level or bi-level st or AVS" The word fail here implies that it is the patient's fault that there was no improvement of their symptoms even though they used the original CPAP/APAP as instructed---as in every night, all night long.

[BlackSpinner]

Ok, I know I am living in fantasyland but I have been wanting to say this for quite awhile and here is my chance.

Get rid of the word, compliant. I think it is demeaning and implies that patient is at fault if he/she didn't follow the physician's advice when there are a million good reasons why the person didn't take the advised actions.

Also, the word implies obedience which I think is very insulting.

49er

Seconding this sentiment 100 times over. And along with it, get rid of "Patient must fail CPAP/APAP before being moved to bi-level or bi-level st or AVS" The word fail here implies that it is the patient's fault that there was no improvement of their symptoms even though they used the original CPAP/APAP as instructed---as in every night, all night long.

Yes I thought I had fallen amongst a cult with all the "Compliance" posts.

[SleepingUgly]

"Patient compliance" is a term used throughout medicine, so good luck with getting that changed!

[Mongo]

A Rx should not be required to purchase masks.

[SleepDepraved2]

Ok, I know I am living in fantasyland but I have been wanting to say this for quite awhile and here is my chance.

Get rid of the word, compliant. I think it is demeaning and implies that patient is at fault if he/she didn't follow the physician's advice when there are a million good reasons why the person didn't take the advised actions.

Also, the word implies obedience which I think is very insulting.

49er

Seconding this sentiment 100 times over. And along with it, get rid of "Patient must fail CPAP/APAP before being moved to bi-level or bi-level st or AVS" The word fail here implies that it is the patient's fault that there was no improvement of their symptoms even though they used the original CPAP/APAP as instructed---as in every night, all night long.

Good luck with that. I'm a medical transcriptionist and those phrases are used for patients taking prescription drugs as well, or any kind of treatment which depends on the patient's cooperation for that matter.

Frankly, I love the idea of the class. With diabetes, doctors came to realize that patient outcomes were better for those with chronic conditions when they had some information and tools to help them cope. The insurance companies also realized that they weren't pouring money down a hole when patient's were taught how to cope with their diabetes and started to insist on it. Given that CPAP therapy is very expensive, you'd think they would realize the same thing would work. I have an electronic modem attached to the back of my unit that tells the insurance company whether I am using the device 4 hours a day for at least 70 percent of the time. If they started out with some more instruction than the minimum I got for setting up the machine and what all the parts were, that would go a long way towards insuring "compliance".

[49er]

Good luck with that. I'm a medical transcriptionist and those phrases are used for patients taking prescription drugs as well, or any kind of treatment which depends on the patient's cooperation for that matter.

Hmm, thankfully, the folks who are responsible for causing hospital acquired infections to no longer be an acceptable risk factor in being hospitalized didn't listen to folks who said, "good luck with getting that changed."

Just because it has been that way for a million years doesn't mean that should be acceptable practice if it isn't right. Don't misunderstand me, I am not saying that is on a par with the hospital infection issues.

But the word is demeaning and implies that the failure of treatment is all on the patient when medical providers are not blameless.

Frankly, I love the idea of the class. With diabetes, doctors came to realize that patient outcomes were better for those with chronic conditions when they had some information and tools to help them cope. The insurance companies also realized that they weren't pouring money down a hole when patient's were taught how to cope with their diabetes and started to insist on it. Given that CPAP therapy is very expensive, you'd think they would realize the same thing would work. I have an electronic modem attached to the back of my unit that tells the insurance company whether I am using the device 4 hours a day for at least 70 percent of the time. If they started out with some more instruction than the minimum I got for setting up the machine and what all the parts were, that would go a long way towards insuring "compliance".

Agree about the class. It would also help to be told that they were offered. I was never told anything about this by my first sleep physician until I found out from someone who was in a position to know that they were.

By the way, I looked on the website and didn't see anything listed. So that is why I was caught off guard.

So maybe in the patient bill of rights, it should state patient needs to be told of all services that the sleep center offers. Obviously, that is common sense but then again, you know how that goes.

49er

[asleep@thewheel]

"So maybe in the patient bill of rights, it should state patient needs to be told of all services that the sleep center offers. Obviously, that is common sense but then again, you know how that goes"

I like that as well. FULL DISCLOSURE From the Sleep Center and Doctors as to what choices are available to the patient for treatment.

[pats]

"Patient compliance" is a term used throughout medicine, so good luck with getting that changed!

I agree that "compliance" is standard terminology. What seems insulting to me is the machine checking, rather than asking the patient.

I have a couple of prescriptions I'm supposed to take. Each time I go in to see my doctor the person taking my vitals asks whether I'm still taking them. They take my word for it, without any video of me swallowing pills.

Daily exercise is very important for managing several conditions I have. My doctor asks me whether I'm still exercising regularly. She does not ask to see my pedometer to check the numbers of steps.

Some years ago, I had a surgical wound healing problem that was treated with a rented DME device that applied suction. There was nothing to check that I was keeping it attached the required number of hours per day.

Why are XPAP patients not trusted to report their own "compliance"? I can understand having the machine collect a log, just because it is difficult, and often undesirable, to keep track of time when one is supposed to be sleeping, but that should be for the patient's information, just as my pedometer makes it much easier for me to keep track of how many steps I've walked each day.

[SleepingUgly]

But the word is demeaning and implies that the failure of treatment is all on the patient when medical providers are not blameless.

The word "noncompliant" suggests an authoritarian relationship with the patient where the doctor tells the patient what to do and if they do it, they were "compliant with treatment" and if they don't, they were "noncompliant".

There's a lot of change to strive for in medicine.

[SleepDepraved2]

Good luck with that. I'm a medical transcriptionist and those phrases are used for patients taking prescription drugs as well, or any kind of treatment which depends on the patient's cooperation for that matter.

Hmm, thankfully, the folks who are responsible for causing hospital acquired infections to no longer be an acceptable risk factor in being hospitalized didn't listen to folks who said, "good luck with getting that changed."

Just because it has been that way for a million years doesn't mean that should be acceptable practice if it isn't right. Don't misunderstand me, I am not saying that is on a par with the hospital infection issues.

But the word is demeaning and implies that the failure of treatment is all on the patient when medical providers are not blameless.

I'm not saying it's not a worthy goal. It's just that it goes deeper than just our issue, it's endemic to the profession in general. Most doctors have far healthier egos than your average musician (being one and married to one, I can tell you a musician's ego covers raging insecurity, for the most part ) Many doctors think they are God and there are plenty of support staff who would agree. The last service I worked for, the owner couldn't even joke about the doctors we were transcribing for...she just reverenced them so much. One reason I don't work for her anymore!

Plus you're looking at more of an attitude change than a procedure change. It's not about making sure people wash their hands, but change the way they think. Much harder to do, IMO.

Frankly, I love the idea of the class. With diabetes, doctors came to realize that patient outcomes were better for those with chronic conditions when they had some information and tools to help them cope. The insurance companies also realized that they weren't pouring money down a hole when patient's were taught how to cope with their diabetes and started to insist on it. Given that CPAP therapy is very expensive, you'd think they would realize the same thing would work. I have an electronic modem attached to the back of my unit that tells the insurance company whether I am using the device 4 hours a day for at least 70 percent of the time. If they started out with some more instruction than the minimum I got for setting up the machine and what all the parts were, that would go a long way towards insuring "compliance".

Agree about the class. It would also help to be told that they were offered. I was never told anything about this by my first sleep physician until I found out from someone who was in a position to know that they were.

By the way, I looked on the website and didn't see anything listed. So that is why I was caught off guard.

So maybe in the patient bill of rights, it should state patient needs to be told of all services that the sleep center offers. Obviously, that is common sense but then again, you know how that goes.

49er

I'm with you on that one.

[motherall]

I'm not sure how this would apply in other countries with socialized medicine, but in the U.S. I think we desparately need the following:

The right to be given a copy of our prescription, to be informed by our insurer of exactly how CPAP equipment and supplies are covered by our insurers, and to be informed that we have a right to choose any DME or supplier we wish.

In our non-socialized medical system, the above is crucial.

Under current patient/doctor law, we already have those rights. One may need to make the doctor's employees aware of it but your prescription is yours as part of your medical records. It won't be offered but ask. If you are refused, then cite ERISA rules. You also have the right to use any DME you like...your insurance company does not have to pay them as any other provider if they hold contracts with certain other companies. In that case, you pay the penalty for using someone else. It is our responsibility as insured's to know our policies and rights. Call your customer service area and ask questions. Read your plan description and documents. If you didn't get them or have access to them online, again, make it known that it is your right and demand the information. All the laws in the world don't help in one doesn't inquire. As is often said in court, ignorance is no excuse.

[asleep@thewheel]

IGNORANCE IS NO EXCUSE.

However oxygen/sleep deprivation tends to lead to a whole lot of ignorance along the way.
Yes there are rules in the fine print. We just need to magnify them.

Thank you for the reference.

[DiverCTHunter]

1) Any patient who undergoes an in-lab sleep test should be provided with a CD containing a copy of the raw data at the end of the test AND a complete copy of the written report (including the summary graphs) as soon as it is available; at the latest this should be at the next follow-up appointment with the doc.

Wicked good idea! Not that many would benefit from the raw data, but those that could should have it.

<lawyer hat>
The digital data must either be provided in a commonly readable format, or contain reader/display software compatible with at least two (2) commonly used computer operating systems. This data, and all accompanying software shall be considered a single "page" when calculating "duplication and processing fees" during any HIPAA records requests.
</lawyer hat>

• All data-capable machines MUST preserve a full copy of the data in its onboard non-volatile memory for a minimum of 120 days, and MAY NOT overwrite external non-volatile memory until that memory is full. (No more S9 auto-wiping data after 7 days).
• Any machine manufacturer MUST provide a patient version of the software free-of-charge as part of the purchase price of the machine.

I'd add something about low-cost firmware updates for new "features" like A-Flex vs C-Flex, EPR, etc..., but I've worked with enough medical people to know they'd never be able to figure out how to apply them.

[zoocrewphoto]

2) No Full Face Masks unless the patient has problems with nasal masks. They leak more and can make apnea worse because they can push the jaw back.

I really do wish people would at least try to be tolerant of those of us who want the right to choose FFM's.

And for the Patient's Bill of Rights: EVERY PATIENT SHOULD HAVE THE RIGHT TO CHOOSE MASKS/EQUIPMENT/DME'S, regardless of insurance coverage (or not)!

I'm with you. I wouldn't even consider cpap for several years because I thought it required a nasal mask, and there was no way I would be able to use one. Why should I be forced to buy a mask I can't use, just to prove to some bureaucrat that I can't use it. I asked for a full face mask. I got one, and I am very happy with it. My sleep has improved. My AHI has gone over 4 only twice in 2 two months. My blood pressure finally went down. I FEEL better. My treatment is a SUCCESS. With a full face mask. Why would anybody want to deny me that opportunity?

Isn't it bad enough that people who need bipap are required to try and fail with the cpap before they can try bipap? This is the same type of thing, just smaller scale. Why would anybody require somebody to start off with failure when they know they can succeed with the right mask?