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Mike started a discussion about this at http://www.sleepguide.com/forum/topics/npr-web-chat-on-sleep-apnea .
The issue here is sleep doctors and other medical professional and DMEs who believe you should follow their instructions blindly and let them control your therapy. There is a rapidly growing body of well-informed patients who are proving they can make big improvements in their therapy by being fully involved. A major aspect of being fully involved is having a fully data-capable machine (and better yet the manufacturer's software) to monitor apneas, hypopneas, snores, and mask leak. To improve their therapy, these patients are making adjustments to their CPAP settings.
With a little experimenting with settings and monitoring the results, most of us have made significant improvements in our therapy.
What do you do when you are faced with a medical professional who doesn't want you to be so involved and does not want you to change your settings? I am proposing the statement below as a "battle cry" to be presented over and over to these professionals by their assertive patients.
"Sleep doctors and other sleep medical professionals need to come out of the dark ages for their own sake and that of their patients.
The market is moving in the direction of patients being fully involved in their therapy. Look at how medical professionals treat diabetes. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise.
CPAP is much simpler and less invasive than diabetes treatment, but just as important to good health. Educate your patients. Encourage them to learn how to read data from their data-capable CPAP machines. Empower them to prudently modify their CPAP settings.
You jeopardize your medical practice by letting your patient base become frustrated and hostile toward your "gold standard" sleep apnea treatment. Don’t be left behind. Empower your patients to take control of their own therapy and improve their lives."
I had to quit my first sleep doctor because he and his associates were adverse to patients with this attitude. I am happy to say that I found three other doctors who are comfortable with me being responsible for my own therapy and making changes to my CPAP machine settings.
Regards,
The issue here is sleep doctors and other medical professional and DMEs who believe you should follow their instructions blindly and let them control your therapy. There is a rapidly growing body of well-informed patients who are proving they can make big improvements in their therapy by being fully involved. A major aspect of being fully involved is having a fully data-capable machine (and better yet the manufacturer's software) to monitor apneas, hypopneas, snores, and mask leak. To improve their therapy, these patients are making adjustments to their CPAP settings.
With a little experimenting with settings and monitoring the results, most of us have made significant improvements in our therapy.
What do you do when you are faced with a medical professional who doesn't want you to be so involved and does not want you to change your settings? I am proposing the statement below as a "battle cry" to be presented over and over to these professionals by their assertive patients.
"Sleep doctors and other sleep medical professionals need to come out of the dark ages for their own sake and that of their patients.
The market is moving in the direction of patients being fully involved in their therapy. Look at how medical professionals treat diabetes. They educate and empower their patients. Their patients take blood samples; read blood glucose levels; interpret the results; adjust their medications; give themselves injections of insulin (!); and adjust their diet and exercise.
CPAP is much simpler and less invasive than diabetes treatment, but just as important to good health. Educate your patients. Encourage them to learn how to read data from their data-capable CPAP machines. Empower them to prudently modify their CPAP settings.
You jeopardize your medical practice by letting your patient base become frustrated and hostile toward your "gold standard" sleep apnea treatment. Don’t be left behind. Empower your patients to take control of their own therapy and improve their lives."
I had to quit my first sleep doctor because he and his associates were adverse to patients with this attitude. I am happy to say that I found three other doctors who are comfortable with me being responsible for my own therapy and making changes to my CPAP machine settings.
Regards,
Views: 2028
Replies to This Discussion
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Permalink Reply by sleepycarol on
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All I can add is
AMEN!!!
I, too, advocate that patients should be empowered to monitor their own therapy and to take charge. I think that sleep professionals do have a place and there will always be those patients that simply do not care. But for us that want to take charge we should have the blessings of the sleep professionals.
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Permalink Reply by Rock Conner RRT on
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I support user involvement in CPAP therapy, but a caution is warranted: The FDA, for better or worse, has labeled PAP therapy to require physician prescription. Changing one's CPAP pressure is illegal, & to do so is in fact to practive medicine without license. My patients have heard me say many times that gladly there are no CPAP police enforcing these laws, but when we encourage the OSA community to take their therapy in hand, we must fully inform them of the regulatory environment.
My favorite approach is auto-adjust (APAP) or servo technology, which adapts by algorithm to user needs much better than most PAP users could on their own. Once prescribed and properly set up, APAP monitors the user's breathing & provides optimal pressures. I am encouraged to see that in some local markets APAP technology is being made available at CPAP prices. This is cost-effective because it reduces patient-physician interaction, which is one of the reasons some physicians resist the innovation.
Let's hope for & work toward the day when efficacy, and not protection of physician territory, is the rule.
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If it is illegal for one to change THEIR own pressure -- I would like to see a copy where it states this within the law itself --meaning the actual statues. It IS illegal for a DME to change the pressure without a script -- but no ONE has been able to produce the exact context of the law about patients changing their OWN pressure. As such you, as a RTT, have to make full disclosure about changing pressure since YOU can not change pressure without a doctor's script.
If you are proactive, have the software, are prudent about your changes I see no reason why one shouldn't change THEIR own pressure.
A diabetic is allowed to monitor their therapy and adjust accordingly. This is far more dangerous than a machine blowing air. And does the law ACTUALLY state in diabetes therapy that it is okay for them to do these things or is it just "understood" that they will be proactive.
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Permalink Reply by Judy on
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Oh, HORSEPUCKIES!!! I get so darned tired of reading this blatant piece of BS that it is illegal for patients to change their CPAP pressure settings!!!! THERE IS NO LAW IN ANY STATE OR BY THE FEDERAL GOVERNMENT PROHIBITING PATIENTS FROM CHANGING THEIR CPAP SETTINGS!!! It is NOT illegal to change YOUR OWN settings! You are NOT practicing medicine w/o a license if you change YOUR OWN settings!!
You would ONLY be practicing medicine w/o a license if you changed SOMEONE ELSE's pressure settings which is WHY local DME staff and RTs can NOT change your pressure settings w/o an order (script) from a licensed doctor
Sheesh! The IGNORANCE of so many "professionals" in the CPAP therapy profession is astounding!.
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Permalink Reply by Banyon on
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Ladies,
Amen to those HORSEPUCKIES! Thank you for speaking out on the behalf of us patients. There is no such law; this is just a dishonest fear tactic to hold power over patients.
I also take exception to Rock Conner RRT's comments about APAP: "My favorite approach is auto-adjust (APAP) or servo technology, which adapts by algorithm to user needs much better than most PAP users could on their own.'
Now Rock, you did say "most PAP users", so I will go a little easy with you on this point. By way of example, I was able to tightly control my therapy by titrating with a straight CPAP pressure. I found that the APAP settings just do not work as well for me. What disturbs me about this paragraph of yours is that you speak of your "favorite approach". I am all about the patient having options. At home I have a "fancy" APAP with software and I keep my settings optimized. On the other hand, I have a cheap plain CPAP, non-data capable, that I use when travelling and it suits me fine. I don't want anyone in the medical profession or the medical supply industry (nor your lobbyists in DC) limiting which machines are available. When you say, "my favorite approach", you are admitting a bias. I encourage you to explain to patients why you like this approach and even to try to sell them on this approach. However, you should have no say in limiting patients' options for equipment.
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Permalink Reply by Mike on
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Ok, guys, have to stir up the pot here and play devil's advocate... not because I believe we should not be able to change the settings on our own devices, but just because, i'll admit it, i'm confused as to whether we can, as a matter of law, change our own settings on our own devices.
A lot of the applicable law here is on the state level. I'll take my own state, California, as an example. California, as an incidental matter, tends to go nuts in terms of regulating the heck out of us, and is a lot more "hands on" and in your face as a general rule than are the other states. So my impression, without doing the research of going through the laws of each of the 50 states, is that if it flies here in California, it's likely to fly in any other state of the union. That said, NY and Florida are often pretty particular too, so who knows what NY and FL will come up with. That said, here it goes...
In California, under the California Business And Professions Code Section Section 4022, CPAP and other xPAP machines are deemed "Dangerous Medical Devices" because they carry a federally mandated label regarding their prescription status and are viewed as "unsafe for self-use in humans":
"Dangerous drug" or "dangerous device" means any drug or
device unsafe for self-use in humans or animals (emphasis my own), and includes the
following:
(a) Any drug that bears the legend: "Caution: federal law
prohibits dispensing without prescription," "Rx only," or words of
similar import.
(b) Any device that bears the statement: "Caution: federal law
restricts this device to sale by or on the order of a ____," "Rx
only," or words of similar import, the blank to be filled in with the
designation of the practitioner licensed to use or order use of the
device.
(c) Any other drug or device that by federal or state law can be
lawfully dispensed only on prescription or furnished pursuant to
Section 4006.
Federal Law (Title 21, Part 801, Section 109 of the Code of Federal Regulations) requires CPAPs and other xPAPS to carry a federal legend regarding their prescription status:
21 C.F.R. § 801.109 Prescription devices.
Title 21: Food and Drugs
PART 801-LABELING
Subpart D-Exemptions From Adequate Directions for Use
§ 801.109 Prescription devices.
A device which, because of any potentiality for harmful effect, or the method of its use, or the collateral measures necessary to its use is not safe except under the supervision of a practitioner licensed by law to direct the use of such device, and hence for which "adequate directions for use" cannot be prepared, shall be exempt from section 502(f)(1) of the act if all the following conditions are met:
(a) The device is:
(1)(i) In the possession of a person, or his agents or employees, regularly and lawfully engaged in the manufacture, transportation, storage, or wholesale or retail distribution of such device; or
(ii) In the possession of a practitioner, such as physicians, dentists, and veterinarians, licensed by law to use or order the use of such device; and
(2) Is to be sold only to or on the prescription or other order of such practitioner for use in the course of his professional practice.
(b) The label of the device, other than surgical instruments, bears:
(1) The statement "Caution: Federal law restricts this device to sale by or on the order of a ____", the blank to be filled with the word "physician", "dentist", "veterinarian", or with the descriptive designation of any other practitioner licensed by the law of the State in which he practices to use or order the use of the device; and
(2) The method of its application or use.
(c) Labeling on or within the package from which the device is to be dispensed bears information for use, including indications, effects, routes, methods, and frequency and duration of administration, and any relevant hazards, contraindications, side effects, and precautions under which practitioners licensed by law to administer the device can use the device safely and for the purpose for which it is intended, including all purposes for which it is advertised or represented: Provided, however, That such information may be omitted from the dispensing package if, but only if, the article is a device for which directions, hazards, warnings, and other information are commonly known to practitioners licensed by law to use the device. Upon written request, stating reasonable grounds therefor, the Commissioner will offer an opinion on a proposal to omit such information from the dispensing package under this proviso.
(d) Any labeling, as defined in section 201(m) of the act, whether or not it is on or within a package from which the device is to be dispensed, distributed by or on behalf of the manufacturer, packer, or distributor of the device, that furnishes or purports to furnish information for use of the device contains adequate information for such use, including indications, effects, routes, methods, and frequency and duration of administration and any relevant hazards, contraindications, side effects, and precautions, under which practitioners licensed by law to employ the device can use the device safely and for the purposes for which it is intended, including all purposes for which it is advertised or represented. This information will not be required on so-called reminder-piece labeling which calls attention to the name of the device but does not include indications or other use information.
(e) All labeling, except labels and cartons, bearing information for use of the device also bears the date of the issuance or the date of the latest revision of such labeling.
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Well, if one wants to stir the pot and risk some idiot legislators making it illegal to do so one can always contact their state legislators and ask the question. I assume all states provide their legislators w/access to a legal staff who can research the situation and offer an opinion or a quote from the state or federal law.
Personally, I see this as nothing more than an intimidation tactic on the part of far too many in the sleep "profession". A profession for which I do not have a lot of respect, altho I do have respect for SOME in the profession as individuals - but the profession as a whole - uh uh.
I have no respect for sleep "specialist" doctors who never bother to consult w/and meet w/patients face to face, who aren't willing to discuss study results w/the patient, who don't respect their patients enough to recognize them as a member of their own medical team.
I have no respect for "sleep labs" that don't provide a sleep "specialist" or "specialists" to consult w/their patients, who don't provide staff to explain study results to their patients, who don't provide clean, comfortable facilities and in a safe environment, who don't provide prompt scheduling and results consults in a timely manner, who drag their feet or refuse to provide full data reports when requested.
I have no respect for DME suppliers who don't provide access to KNOWLEDGEABLE, XPAP EXPERIENCED RTs, who refuse or give grief to clients who request a fully data capable xPAP, who don't provide proper mask fitting facilities and equipment, who don't provide the education, support and truthful advice to their clients; and who don't take advantage of the manufacturer's mask replacement policies in order to offer a lenient mask exchange policy to new clients.
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Permalink Reply by Duane McDade on
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Wow! I heard about sleep labs like the ones you described. I've been a sleep tech. for six years and i work for a Doctor who consults the patients the next day, when posible. The techs are not allowed to give patients any information about they're sleep it's a violation of the A.M.A. rules. As far as someone adjusting CPAP levels without a sleep study? NO. I don't think that is a good Idea. This must be done while you are Sleeping . The machine's program is only to let the D.M.E. company About leakage, time used, and don't let me get sterted about how bad auto Cpap machines are.....they dont work at all !!!
Judy said:Well, if one wants to stir the pot and risk some idiot legislators making it illegal to do so one can always contact their state legislators and ask the question. I assume all states provide their legislators w/access to a legal staff who can research the situation and offer an opinion or a quote from the state or federal law.
Personally, I see this as nothing more than an intimidation tactic on the part of far too many in the sleep "profession". A profession for which I do not have a lot of respect, altho I do have respect for SOME in the profession as individuals - but the profession as a whole - uh uh.
I have no respect for sleep "specialist" doctors who never bother to consult w/and meet w/patients face to face, who aren't willing to discuss study results w/the patient, who don't respect their patients enough to recognize them as a member of their own medical team.
I have no respect for "sleep labs" that don't provide a sleep "specialist" or "specialists" to consult w/their patients, who don't provide staff to explain study results to their patients, who don't provide clean, comfortable facilities and in a safe environment, who don't provide prompt scheduling and results consults in a timely manner, who drag their feet or refuse to provide full data reports when requested.
I have no respect for DME suppliers who don't provide access to KNOWLEDGEABLE, XPAP EXPERIENCED RTs, who refuse or give grief to clients who request a fully data capable xPAP, who don't provide proper mask fitting facilities and equipment, who don't provide the education, support and truthful advice to their clients; and who don't take advantage of the manufacturer's mask replacement policies in order to offer a lenient mask exchange policy to new clients.
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What about the majority of patients that have incompetent DME's and doctors that don't care? Should we be penalized for tweaking our therapy on our own? Should we continue to endure inadequate treatment and the associated risks involved in that inadequate treatment?
Many of us agree that if you have a GOOD doctor that is active in your treatment, a competent DME that is caring and available -- then one should take advantage of those professionals for their treatment needs. We, also, agree that a sleep study gives a better overall view of what is going on.
BUT there is a whole group of users that are swimming in the pool of inadequate DME's that outright do NOT care about our treatment and are in business for the almighty buck and doctors that are too busy or incompetent to care about our treatment. I am in this group. I choose to be proactive in my treatment and will continue to do so. I am in charge of my treatment and if things go bad -- I have only myself to blame. I have seen improvement in sleep apnea by being proactive and think that is a good thing.
As far as auto paps go -- why are they so bad in your opinion? You have a whole lot of different options with that machine that is not available with just a cpap.
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Duane,
You are out of touch with what is happening in the treatment of sleep apnea. There is a large and rapidly growing group of us who are in full control of our CPAP process. We use data-capable machines and software to monitor apneas, hypopneas, snores, and leaks. We have our pressure settings optimized better than any sleep lab could do. In your sleep lab is a strange sleeping environment that is very unlike how we sleep at home. You have lost the game to set an optimal pressure as soon as the patient makes an appointment.
The market is headed our way. Intelligent, literate patients will control their therapy. The first edge of sleep doctors changing their attitude is just beginning. They see the need for portable home diagnosis and for educated patients. For your sake find out what good things we are doing. Unless you plan to retire soon, for your professional sake and personal satisfaction, you don't want to be left behind. You will find being a medical professional who empowers their patients is a very rewarding career!
Duane McDade said:........As far as someone adjusting CPAP levels without a sleep study? NO. I don't think that is a good Idea. This must be done while you are Sleeping . The machine's program is only to let the D.M.E. company About leakage, time used, and don't let me get sterted about how bad auto Cpap machines are.....they dont work at all !!!
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Duane .... sorry, I appreciate your interest in taking part in this forum - BUT - I've been thru this w/a sleep specialist at a highly respected thru out the world clinic, the standard lecture on how the data from auto PAPs isn't any good, etc., etc., etc. I tell you, just lilke I told him: HORSEPUCKIES!!!!!
He COULD have spent our limited office consult time discussing my sleep disorder, my PSG results, my titration results, our options, his recommendations, etc. instead the ignoramous chose to waste "my" valuable time and his time w/a long spiel, tirade actually, on the deficiencies of the data xPAPs provide. I've seriously considered billing HIM for MY time wasted w/that consult. I won't go into his self-serving office notes that contained some less than truthful statements.
None of us are saying that an autoPAP or even today's at-home sleep study equipment is always as effective as a full in-lab PSG. In-home studies and APAPs have their limitations the prime one being they aren't able to discover or uncover other sleep disorders than OSA. BUT - in-lab PSGs have their own limitations, namely the skill of the PSGT and the scoring RPSGT and sleep "specialist".
But we can refer you to story after story of those who have been scripted the WRONG pressure based on a one-night in-lab study, of those whose local DME's RT set their xPAP's therapy settings incorrectly, etc., who have been able to effectively titrate and "tweak" their pressure settings to EFFECTIVELY achieve ideal therapy via the data provided by their APAPs.
It is totally ignorant to make such a statement: "... about how bad auto Cpap machines are.....they dont work at all !!!"
I don't advocate that "all" xPAP users should be expected or forced to take an active role in their xPAP therapy - BUT - for those who WANT to take an active role in their xPAP therapy they should be ENCOURAGED to do so and provided w/the parameters they can work w/in conjunction w/their sleep doctor - IF the sleep doctor is even worth working with. Too many aren't.
For crying out loud - THINK! Diabetics are educated to monitor their own therapy under guidance and w/in paraeters set by their doctors, asthmatics are educated to monitory their own therapy under guidance and w/in parameters set by their doctors - and theirs can be an IMMEDIATE, LIFE-THREATENING disease. Yet, those w/OSA requiring xPAP therapy aren't intelligent enough to monitor and adjust their own therapy w/in the parameters set by their doctors???? OSA is rarely an immediate, life-threatening disorder. OR is it that the SLEEP SPECIALISTS aren't intelligent enough to provide the necessary parameters and guidance to THEIR OSA patients? I submit it is the latter.
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Carol, your point that we should be able to manage our own CPAP equipment is logical & I share the sentiment, but as Mike's helpful log of the labeling requirements shows, such devices are required by federal law to be operated under the supervision of a practitioner licensed by law to direct the use of such device, blah blah blah. I'm not defending the FDA labeling, in fact I don't agree with it, but I am stating the danger of advocating that folks undertake their own CPAP management without letting them know that there are potential, if remote & unlikely, consequences for doing so. How did this get to be such an emotional issue that the suggestion of disclosure raises such ire?
sleepycarol said:If it is illegal for one to change THEIR own pressure -- I would like to see a copy where it states this within the law itself --meaning the actual statues. It IS illegal for a DME to change the pressure without a script -- but no ONE has been able to produce the exact context of the law about patients changing their OWN pressure. As such you, as a RTT, have to make full disclosure about changing pressure since YOU can not change pressure without a doctor's script.
If you are proactive, have the software, are prudent about your changes I see no reason why one shouldn't change THEIR own pressure.
A diabetic is allowed to monitor their therapy and adjust accordingly. This is far more dangerous than a machine blowing air. And does the law ACTUALLY state in diabetes therapy that it is okay for them to do these things or is it just "understood" that they will be proactive.
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