Sleep Review wrote a piece on our research paper, ‘Positive airway pressure adherence and sub-threshold adherence in PTSD patients with comorbid sleep apnea’ recently published it in Patient Preference and Adherence. The Sleep Review article can be found online at their site, here. This article provided an opportunity to offer more details on our rationale for using advanced PAP in trauma survivors. In addition, their article garnered reader attention, and three specific comments were posted to which I subsequently responded. You can read these comments and replies at the link above.
In discussing our research with the Sleep Review writer, Dillon Stickle, I emphasized our “drowning in air” analogy as the core behavioral response that threatens trauma survivors when using PAP therapy, particularly fixed CPAP pressure. This sensation is very close to the feeling experienced when you stick your head out the window of a car traveling 60 mph or greater. For some individuals, it might feel like a refreshing way to clean your teeth. But, for individuals with high levels of anxiety, the strong blast of the air can lead to a startle response in your respiration. Meaning a sudden urge forces you to stop breathing if it feels like you are drowning in air. This response could occur while breathing-in or breathing-out, but when CPAP is applied, most people can tolerate pressurized air breathing-in at low-pressure settings. This is because the direction matches—you are breathing in along with air delivered inwards. Expiration changes things dramatically, because you are now trying to breathe out, but the CPAP pressurized air is still delivered inwards.
PTSD patients specifically (and many other anxiety patients in general) experience and complain about discomfort of CPAP during the expiratory phase of respiration. Patients have previously informed us they were “drowning in air,” a term we now use as a useful analogy in clinical practice. As you might imagine, the stronger the sensation of suffocation, the faster the patient will rip off the mask to stop the flow of pressurized air. Unfortunately, depending upon the intensity of the response, some patients literally reject CPAP immediately afterwards and often do not return for treatment until months or years later.
In a sleep lab, this experience can be sorted out easily before lights out when a patient is working with the sleep technologist during the desensitization, pre-titration period. The technologist is spending this time before the study commences to fit the patient with various masks. At the same time, to my knowledge, most sleep laboratories also provide the patient with a taste of pressurized air so the sensations are not surprising or overwhelming. However, at this key point, it appears many sleep labs are not providing their patients with the chance to determine whether a more comfortable air pressure delivery mode (e.g. BPAP) is more appropriate.
This lack of choice has always puzzled us, because it seems obvious enough that as many as 30% to 60% of patients will describe a negative initial experience to fixed pressurized air delivered with CPAP. In our lab, we almost invariably deliver CPAP, BPAP and ABPAP during the desensitization period to gauge the patient’s response. In a smaller proportion of cases, we will try out ASV even though the patient has not yet qualified for this more sophisticated delivery of air. As far as I can tell, one problem arises if a sleep center is wedded to the belief that CPAP is the only mode of care needing to be offered, because somehow everyone can get used to CPAP. As this thinking goes, if they cannot tolerate CPAP, then no other pressure delivery mode would provide any improvements. Another possibility might be the untoward influences of insurance carriers that push people into CPAP-only prescriptions, which then feed back to the sleep lab and inhibit sleep techs from trying other modes. There may be many other factors, and I’m not suggesting here I am aware of all the thinking and circumstances that induces so many sleep centers and labs to stick with CPAP far beyond its worthiness. And, when our field considers that as much as 50% of all CPAP users fail or reject the therapy, one would think additional options might be considered.
This failure of imagination has long affected the field of sleep medicine, and even among the few research studies on PTSD and PAP, CPAP is the predominant mode of treatment. Yet, in most research investigations the adherence rates among PTSD patients falls below 50% and often resides in the 25% to 40% range. Thus, failing to imagine other options, namely BPAP, ABPAP or ASV, leaves patients without important access to rescue devices.
The irony, as discussed in the Sleep Review piece, is that CPAP is literally traumatizing some patients, and PTSD patients would be one of the cohorts most susceptible to these adverse outcomes. Many facilities, however, gain little to no training or experience in dealing with PTSD patients for the obvious reasons that most sleep centers and labs are not owned and operated by psychiatrists or psychologists. Because we specialize in mental health patients with sleep disorders, we were persuaded by 2005 to examine other PAP options, and so our quest began with BPAP at that time. Next, in 2008 to 2010, we used a lot of ABPAP. Then, from 2010 onwards we use ABPAP in about two-thirds of our patients and ASV modes in one-third. Regarding ASV therapy, we usually discover a central apnea problem among patients fighting CPAP therapy, and so these individuals qualify for the diagnosis of complex sleep apnea and thus obtain insurance coverage. However, over the past few years we occasionally encounter an isolated case in which the patient cannot tolerate any other device, but doesn’t qualify with the central apnea issue. We have appealed these cases to insurers and also have had the patient try out the ASV mode in the sleep lab to build our case for insurance coverage. Surprisingly or not, in these latter cases, some insurers have granted coverage to the individual, because no other form of PAP therapy worked or could be tolerated.
This last point raises an interesting example of a traditional view about medical practice. That is, if a patient fails Drug A, then Drug B, then Drug C for diabetes or depression or arthritis and so on, the physician is obligated and in the insurer is usually willing to accept a petition (prior authorization) for the patient to try Drug D or Drug E. This standard of practice is widespread in managing medication regimens for millions of patients for whom the first couple drugs provided no treatment gains or inflicted serious side effects. The question should arise then as to why this formula is not widespread in the practice of sleep medicine, wherein physicians could recommend more advanced PAP therapy modes for struggling patients.
This lack of responsiveness to CPAP failure patients begs the question, because a major underlying premise that fuels this CPAP fixation is that no definition of CPAP failure has been standardized in the field of sleep medicine or among insurers. Many sleep professionals mistakenly think of CPAP failure in terms of hours of use, when in standard medical practice the patient’s poor response to treatment should almost always be the guiding principle for assessing whether someone is failing therapy. If someone averages 6 hours per night for 6 nights per week, they are easily adherent based on the arbitrary Medicare guidelines for compliance. But, these hours reveal nothing in many cases about whether the patient is gaining benefit from the device. Failure then should not be based on using or not using except in the case where someone rejects CPAP outright and needs to try something else, be it advanced PAP, OAT or ENT surgery. Failure is about the poor response to treatment, but nowhere can you find a standardized definition that would push insurance carriers to accept a patient’s need to move beyond CPAP and onto advanced PAP modes. With this information, a physician would possess the capacity to go to bat for the patient and argue the need for more advanced PAP therapy in discussions with insurers’ medical directors, many of whom sadly know very little about PAP therapy and also believe in the one size fits all model of CPAP, CPAP, CPAP.
The last part of the Sleep Review piece delved into the construct of partial users or sub-threshold adherence, wherein patients may not be achieving the 4 hours per night for 5 nights per week threshold, yet they are still using the device and receiving benefits such as decreased insomnia and sleepiness. Several papers prior to our work have reported on the status of partial users and the rationale for supporting their efforts, because of their treatment gains. But again, nothing has been codified in the sleep literature or insurance policies to make things easier for these patients to continue with their devices. This point was raised by one of the commenters, who is a sleep tech, and she astutely pointed out how PTSD patients are the type of sleepers frequently experiencing shorter sleep periods, which further complicates their difficulties with achieving PAP adherence.
Another commenter mentioned the use of OAT aka mandibular advancement devices (MAD) as an alternative to PAP therapy, given that this mode of treatment might have higher compliance rates. My only concern with OAT/MAD in trauma survivors is that I notice they often suffer more frequent episodes of temporo-mandibular joint (TMJ) dysfunction, which is a relative contraindication against using dental devices. Nevertheless, for those not susceptible to this issue, I think the use of OAT/MAD is an excellent first choice for many individuals with PTSD, given the cumbersome, and as discussed, traumatizing nature of PAP therapy. Then again, bear in mind that for some trauma survivors inserting something into the mouth may itself prove re-traumatizing among individuals who have suffered sexual assault.
The last comment was a very biting, critical and cynical paragraph directed at the insurance companies. The gist of the ideas were that insurance companies create obstacles so patients fail or otherwise drop out of care and then since the patient moves on in time to another insurance company, there is no reason for the insurer to be focusing on improving a patient’s health. What’s remarkably ironic about these ideas is their similarity to what was said about health maintenance organizations when they arose in the 1970s and 1980s. Many medical professionals railed at that time against the obvious “hoops-to-jump-through” systems. And, oftentimes these complaints were valid.
However, the deeper issue is why did HMOs arise and why do we have a healthcare system now that is no longer focused on the actual term “insurance.” Think about buying auto insurance or homeowner’s insurance. When you need new brakes, do you call your auto insurer to make a claim to get coverage? How about when your house needs to be painted? Do you call the homeowner’s agent to put in a claim for coverage? Of course not! These insurance policies reflect real-world concerns about risk. Might you damage your car in an accident? Might a tree fall on your house? How much are you willing to pay to cover the costs of these events should they occur to you? Insurance companies pool their information for millions of automobile owners and homeowners and then establish risks and rates, after which you select and pay for a policy you can afford and presumably suits a good proportion of your needs should bad things unfold.
Health insurance actually used the same system a very long time ago in which you bet on the cost of catastrophic medical illness and paid for coverage. Not everyone had the money to do so, but this form of coverage known as “major medical” was the only game in town as far as I know about the history.
The big change occurred in the late 1940s when the U.S. Congress was under severe restrictions from current wage-and-price control laws, so it passed new legislation that allowed for health insurance through employers as a benefit that was provided without raising wages (against the law at the time). While on the surface, this approach would have certainly seemed like a good idea, many physicians realized the fatal flaw in such systems. In fact, an organization was specifically founded at that time by a group of physicians, Association of American Physicians and Surgeons, and on their website you can read many stories about this history and their current efforts to turn medicine into a more free market experience.
Unfortunately, many people hear the words “free market” and imagine that it describes our current system, but there are notable differences and nearly all the distinctions center around the problems caused by having a middle man business relationship. That is, the insurance companies come between doctors and patients. Making matters worse, the government frequently steps in to put rules and restrictions on both insurers and doctors that ultimately work their way into the direct medical care of patients on an individual basis.
Think for a moment about our apnea-hypopnea index and its use in sleep medicine. Where did it come from? Is it a scientifically sound and solid way to approach sleep breathing disorders? Why is it still in use? Who benefits and who is harmed by the use of the AHI? We’ve discussed many of these points in past posts. Suffice to say that the AHI is based on soft science. Millions of people can have sleep-disordered breathing without meeting the standard AHI criteria, so that means the AHI is serving as an artificial cut-off that allows any mix of authorities, including doctors, insurers, and government regulators to unequivocally swear you don’t have a sleep breathing disorder when in fact you do.
When I spoke with Dillon Stickle about the piece in Sleep Review, this issue reminded me of a patient who I recently ran into when visiting my own primary care doctor. She was one of the first of the “non-official-UARS-but-you-really-have-UARS-anyway” patients we began to work with in the early 2000s. Not only was her AHI less than five, but her RDI was less than 15, however, when you looked at the airflow curve, there was not a single instance of normal breathing the entire night. Instead, the patient’s airflow curve was flattened as in classic flow limitations or RERAs in the UARS pattern, but because she could go 10 or even 30 minutes of flattening before an arousal occurred, the event was scored as lasting the 10 or 30 minutes. This scoring approach contrasts sharply with how 99% of all apneas or hypopneas are scored, which are almost invariably based on the standard 30-second polysomnogram epoch. In other words, when you have an apnea or hypopnea, it is exceedingly common for your breathing volume to drop 50% to 100% for 10 to 20 seconds, followed by an arousal in the brain or a full awakening. This timespan is the whole event, and the classic OSA patients repeats this cycle all night long, resulting in hundreds of scorable breathing events.
My patient, showed none of this pattern, but again none of her breathing was normal. Yet, her RDI was around 8, because of the long stretches between arousals or awakenings. We had a lengthy conversation at the time, during which I had to explain insurance would not cover her costs. I also pointed out it would be “experimental” in that I could not guarantee treatment of this “condition” would decrease her sleepiness. She listened attentively and without hesitation simply asked for instructions on how to buy a CPAP device. Within the first few weeks, it was apparent to her the device was a life changing experience that fully eradicated her daytime sleepiness and fatigue. When I recently saw her, she had reported using the device faithfully for a decade with fantastic results. Never at any time would an insurance carrier cover this “condition.”
In a free market system, not only would the experience have been altogether different, but the prices for everything the patient had to pay out of pocket would have dropped dramatically. There would have been no insurance factor to determine eligibility; only the doctor and patient would make the decision about what to try. The patient would have bought the CPAP device directly from the physician’s sleep center or from a DME company like Classic SleepCare, and the prices would have been anywhere from 25% to 50% less costly, because again no insurer or government regulator would have been sticking their nose into the business dealing. The patient as a consumer could shop for the best price instead of being forced to use a particular CPAP supplier, a policy increasingly in practice nowadays. Hitting close to home, many of our Medicare patients were disappointed to say the least when they could no longer work with Classic SleepCare. The old sarcasm, “We’re from the government, and we’re here to help,” never rang more true.
Where does one go with this cynicism and deep concerns about malfunctions in the healthcare system? To be sure, just examine the past 50 years during which no solutions have yielded consistently optimal results, but all of them suffer this same flaw: the belief that health insurance doesn’t have to follow an insurance model. Health insurance can just be prepaid healthcare expenses to cover everything under the sun. As people are often naturally greedy to want the government to solve more problems, we only need to look at the current mess that has now led to outrageously high deductibles and the ensuing complaints: “with deductibles like this, who needs health insurance?”
Paradoxically, these experiences just might lead people to realize medicine in general is moving toward cash-based programs, where there will no longer be an intervening influence from the insurers. Patients will go directly to the doctor and agree to the fee. As people begin to see the futility of the high deductible programs, they will start to concentrate their resources in two ways. First, finding the best catastrophic or major medical policy (sound familiar?), and second look for new opportunities in healthcare like internet services or cash-only urgent care clinics. I don’t think we can say these approaches are booming in the economic sense, but the ideas are booming and about to explode across the country sooner than later. Just consider all the people who now sit at their laptops for psychotherapy treatment instead of traveling to a clinical site.
The wave of the future for healthcare economics is decentralization. Why go to a doctor’s office and wait when instead you can schedule an online appointment to discuss a problem that often may not require a hands-on physical exam. In sleep medicine, we want to know what our patients’ data means regarding leak, residual breathing events, persistent central apneas, hours of use, and subjective response to the PAP machine. Telemedicine resources can cover nearly all this information. Why would anyone want insurance to be involved in the middle of these scenarios?
The irony of ironies is that a sleep doctor sitting at home in his or her pajamas could eventually provide anywhere from 50% to 90% of the knowledge and information that someone needs to acquire and then apply to improve the response to PAP therapy. As you know from past posts, the sleep laboratory remains a critical resource especially for struggling patients, but the telemedicine wave will probably reach so far that eventually the advances in home testing will be at the same level as the sleep laboratory. When and how we get there depends on many factors, but the more we rely on insurers and government regulators to intercede “on our behalf,” the longer it will take to arrive there, and the longer it will take for more sleep physicians to advocate for advanced PAP therapy devices in CPAP failure patients.