Do you know what it feels like to try PAP therapy for the very first time? For most people, there is a sense of an unwieldy, cumbersome, foreign object plastered to the face, something sure to disrupt any attempt at sleep. Even if you were rational enough to recognize the device was designed to help you, it would be unusual if you did not notice some awkwardness the first time you used it. Fortunately, many patients overcome these feelings and treatment progresses in positive ways.
Now, imagine your patient is a soldier who, engaged in combat suffered a chest injury from an IED that caused hours of breathing difficulty. Or a rape victim who nearly suffocated while assaulted in her own bedroom. Or a patient who survived a car accident in which he was trapped in the vehicle anxiously awaiting extraction. Can you picture how these individuals would feel the very first time they attempted PAP therapy?
One key to our understanding of these types of trauma patients is the phrase “the very first time.” Can these patients tolerate PAP therapy the very first time they are exposed to the device? In short, some can, but many cannot. The reason for their discomfort goes far beyond the relatively straightforward experiences of the so-called typical patient. Instead, for anxiety patients with a history of traumatic exposure (sometimes full-blown posttraumatic stress disorder or PTSD), a rational response is not immediately available when first putting on the mask while awake or when first waking up from sleep with it on the face. In fact, the struggle to use PAP may continue for weeks or months, because the contraption triggers anxiety due to a past history of breathing difficulties during traumatic events. The same holds true for an asthmatic or COPD patient currently experiencing poor control of breathing symptoms or ever-present, unpleasant memories of past episodes of poor control. Even anxiety or depression patients without obvious traumatic exposure may feel overwhelmed by the mask, the pressurized air sensations, or both.
With this backdrop, we should ask how could we help these types of patients initiate PAP therapy? Although time is certainly a major factor, the more pressing issue is the style of coaching these patients must receive as the lead-up to using the device. The main options would include three typical procedures following the patient’s initial diagnostic study via a home sleep test (HST):
- A simple desensitization program conducted by a sleep tech on the day of PAP set-up at the HST facility;
- In the venue of an HST setting or in a regular sleep lab, a PAP-NAP could provide a more elaborate desensitization;
- The most advanced coaching opportunity or most prolonged exposure to PAP would occur with a full night titration study, which would likely commence with a lengthy desensitization prior to lights out.
Which one of these three programs is right for a patient with high probability for panicky or claustrophobic feelings about the PAP device? And, by extension, which one of these programs is wrong for such a patient? In my opinion, failing to address the latter question creates the opportunity for a bad outcome, which then may yield a new question: are poor outcomes bad enough to raise the specter of medical malpractice?
Although there are many technical definitions of medical malpractice, the general concept is when a medical professional acts negligently by providing a treatment that falls below accepted standards and causes harm to the patient. Another conceptualization is the deviation away from an accepted therapeutic approach that a more prudent physician would have provided.
Although most sleep centers do not use HST models of care, HST would still be considered an accepted practice—but that is not the issue here. The problem may arise when or how we communicate that PAP therapy equipment, both masks and pressurized air, can trigger claustrophobia or panic attacks under a specific set of circumstances. The physician or sleep tech or both must ask whether adequate instructions were provided to the patient on these potential adverse effects before the individual attempted to use the device at home.
I am not a lawyer. Yet, when coupling my extensive work with trauma survivors and the frequently negative reports from various patients who failed the HST model of care, I can envision any number of unhappy scenarios emerging in clinical venues, which may or may not border on or cross over to medical malpractice.
The most common undesirable outcome arises when a poorly trained sleep tech, or one with very limited experiences in working with psychiatric patients, provides a trauma patient with cursory instructions on using the auto-adjusting PAP device at home. The patient attempts to use PAP and rapidly develops claustrophobic or panicky sensations. Even though this reaction forces the patient to rip off the mask at bedtime or in the middle of the night, the patient feels obligated to continue the exercise, believing that a good faith effort may see things through to a happy ending. However, what if the patient was never properly educated to understand that symptoms of anxiety or rapid breathing (hyperventilation) while using a PAP device may trigger a panic attack? Or what if the patient never learned that trying to control one’s own breathing pattern instead of “submitting” to the PAP cycle almost always causes breathing irregularities that may lead to the undesirable sensations of too little or too much pressurized airflow?
Taken together, what if this poorly prepared patient repeats the attempt at PAP for several consecutive days and finally quits, specifically complaining of the claustrophobic response or the panic attacks? In a worse case scenario, what if this patient reports persisting panic attacks after device use has ceased? What happens next may be where the minefield surfaces. Among the vulnerable, the individual has now established something of a learned behavior (by associating the bedroom and bed with very unpleasant experiences). Furthermore, it is entirely possible in this situation that a PTSD patient already suffering from chronic nightmares, insomnia, and anxiety, notices an uptick in disturbing dreams, some of which turn violent and lead to parasomnias and injury to the patient or his bed partner.
Nothing is farfetched about this progression of events. Severe or unstable PTSD patients are clearly at risk for these types of outcomes, because the device can trigger claustrophobia or panic symptoms. And, when vulnerable people undergo stressful life experiences, it is extremely common for disturbing dreams to arise shortly thereafter. Could all these steps have been eliminated by a broader and deeper educational effort to aid the patient prior to attempting use of the PAP device at home? Possibly, but surely not only is there a greater opportunity to educate the patient by completing a titration in the sleep lab, but also, the actual hands-on support from the sleep tech while the patient is in the act of experiencing PAP therapy is much more likely to tamp down any anxiety response.
A major area of concern for the field of sleep medicine is the lack of mental health evaluations in patients engaged through the HST model of care. While it is probably unknown how many HST programs complete a thorough evaluation of mental health symptoms to screen out patients at risk, a more common problem is that most sleep techs are unlikely to have received training in working with trauma survivors. The training would need to be sufficient such that the tech could confidently inform the physician to cancel the HST effort and bring the patient back to the lab for a PAP-NAP or a titration. In my opinion, it is doubtful this level of training is common at sleep centers.
Another scenario that may occur involves the sleep tech who provides almost no instruction to the patient when an Auto-PAP device is provided through the mail with an accompanying video of questionable educational utility. Obviously, such programs can and do work for some people who suffer minimal or no comorbidities to interfere with the process. But, if the business model of that sleep center does not ask the questions about past mental health history, then, once again, I would suspect these undesirable experiences will emerge in vulnerable patients.
Last, one of the most disturbing factors in the HST equation is most insurance carriers do not specifically list psychiatric symptoms or conditions as contraindications to the use of home testing. In all likelihood, insurance carrier policies, which often are out of date, do not recognize the increasing literature on the prevalence of sleep apnea in mental health patients. If their policies mimic a one-size-fits-all approach, then physicians and sleep techs may believe that their hands are tied and that HST is the only option. Recently, in a discussion (or was it a “battle”?) with an insurer, the only way we could veto the HST was by declaring that the patient was cognitively impaired due to her severe insomnia, chronic nightmares, and her own personal expression of not being able to work the apparatus correctly.
Krakow
In closing, I would note that our center specializes in second opinion patients, and we have seen a fair share of unhappy patients who report miserable experiences similar to the ones described above, falling within the range of mild to severe intensity. Even so, I am certain there are very successful and effective HST models in the practice of sleep medicine. Nonetheless, my concern is that some will point to these undesirable aspects of the HST model, attempting to equate them to medical malpractice or perhaps medical mispractice, because they will declare that intent to help a patient does not excuse a poorly planned delivery of services that resulted in harm to that individual. With increasing research showing the importance and value of PAP therapy in mental health patients, I would suggest sleep centers consider more in-depth patient evaluation and management encounters to clarify who is right and who is wrong for HST.
Barry Krakow, MD, started in sleep research in 1988 and helped pioneer innovative therapies for chronic nightmare patients. Since 1995, he has practiced sleep medicine full-time and currently operates Maimonides Sleep Arts & Sciences Ltd, a private sleep medical center specializing in the treatment of sleep disorders such as insomnia and sleep apnea in mental health patients. He is a member of Sleep Review’s editorial advisory board.
The opinions expressed here are by Barry Krakow, MD, and not necessarily those of Sleep Review.
Reading this story is so true i have just started using a c-pap machine and i suffer from depressed and PTD and i am struggling with wearing the mask.