PAP Therapy Rejection and the Role of Emotion: Sadness and Grief (Part III)

For a substantial number of patients, PAP therapy is an instantaneous non-starter, because they simply cannot “see” themselves using the device. Other patients can face PAP therapy in straightforward ways, because the benefits seem clear-cut so the motivation follows naturally. But, for the patients we'll be discussing next, the phrasing “can’t see myself using PAP” is code for being unable to accept this radical change from the status quo.

More precisely, to accept this change resigns oneself to a new self-perception involving unpleasant feelings of inadequacy and related feelings about troubling defects or deficiencies the individual now perceives. Something has got to be seriously wrong if you need a machine sleep. “Seriously, you want me to use a machine?” These vulnerable patients are the same ones who often ask, “will I be addicted to the PAP device?” Or, they might fit into the category of those who say, “I don’t like to take medications.” Or, “I’m already on enough medications; I don't want to add something else.” These phrases reveal deeper biases, often leading to resistance, chief of which is using a sleep machine implies confirmation or acceptance of something very wrong with one’s mental or physical health or both. And, who wants to admit there is something wrong with your health? Short answer: no one!

When people come to grips with an illness, especially the more serious conditions, it radically changes their outlook on life and on one’s mortality. Knowing your heart or lungs do not function well or that you can no longer walk properly because of irreversible joint damage leads to the obvious conclusion: you have “lost” something. This loss is quite painful, because most people live out a lifespan relatively free of serious illness until they reach the 6th or 7th decade of life if not later. To discover your mind or body no longer function as designed and that no miracle cure is going to make the mind or the body work at the same high level as in the past is a daunting experience, tantamount to a grief experience for some people. The devastation comes in two main ways: the obvious loss of function means you are “disabled” to some extent from how you previously performed; and, you now have the sense that life is on the downslope toward worse dysfunction. 

These types of experiences as they relate to PAP may yield a deeper sadness or grief reaction, which rarely is discussed directly by the sleep apnea patient. At its most basic level, even before the patient considers mortality issues, when someone is confronted with a new and potentially serious medical diagnosis, it feels like an immediate threat or outright attack on the “wholeness” of the person. As an extreme example, imagine how someone feels soon after undergoing an amputation of a limb for whatever reasons. At that moment and for some time afterwards, the individual naturally may not feel whole; and, in the course of daily living activities, he or she will be constantly challenged in ways that invariably serve as reminders of the “deficit.” Although a medical diagnosis may not be as overt as an amputation, for vulnerable individuals who have already been laboring in their lives with medical or psychiatric illness, not only might this sleep disorder feel like another nail in the coffin, but also, it feels rather quickly like yet another limiting burden on one’s lifestyle. Now, consider all the above, and then add this declaration from the sleep doctor: “by the way, you might need to sleep with this mask on your face for the rest of your life.”

Regrettably, few patients snap to the play on words regarding “the rest of your life,” which might motivate people to believe their best sleep is still to come. Instead, being told to wear PAP therapy feels like a very strong statement about aging in a most unhealthy progression. While most people still have some fight left and would prefer to take advantage of this new opportunity to advance their health, others have already been so beaten down in psychological or physiological ways, especially those suffering chronic illness for decades, not much fight is left in them. The thought or picture in the mind of needing to use PAP literally brings them to tears. 

Thus, whether we call it a grief reaction as one grieves over further losses in capacity of the mind and body to function in a healthy way, or whether it is simply frank sadness that this particular turn in life feels so depressing, there are innumerable patients who reject PAP for either of these reasons. Yet, once again, the patient may not have a lot of awareness about how he or she is processing this information. Moreover, their rejection of PAP due to sadness or grief, just like we discussed with fear or social emotion responses, may never openly manifest to yield a clue that would lead sleep professionals to intervene.

In all these patients with various emotional responses to PAP, perhaps the most important thing to consider when encountering an individual with this propensity is to immediately realize that phrases like “just do it” or “get over yourself” are not going to rectify the situation but most definitely will elicit a counterproductive response. Namely, whatever strong emotional responses underlie the patient’s rejection in the first place will now intensify, triggered by the cavalier or belittling manner of the sleep professional who could not accurately gain insight into this patient’s negative mindset.

Which brings us to the closing points that need to be made about sleep professionals and why they often are blind to the difficulties of highly sensitive or otherwise vulnerable patients. Modern medicine nowadays often operates in a pressure-cooker environment where patient encounters may prove exceedingly short, depending upon the time available from the sleep medicine specialist as well as from the daytime sleep technologists, both of whom can enhance educational and coaching efforts. With a relative short timeframe for patient encounters in clinical venues, it would not be unusual for sleep professionals to feel some frustration if they made no headway in a high maintenance patient who looks ready to give up on PAP therapy at a moment’s notice. 

Time and timing then are certainly big factors; and, these issues motivated our center to set up more sleep technologist appointments of longer duration just so we could provide more hands-on coaching. In addition, we use the PAP-NAP for these types of patients, and early on in our use of this extended daytime desensitization procedure, we found patients were more likely to engage in more personal and candid discussions about their negativity towards PAP therapy. In some cases, when patients expressed their strong emotional responses, it provided the necessary relief, and some forward progress was achieved. In other instances, the emotional venting exposed the complexities embedded within and surrounding PAP therapy, which clearly indicated the need for some sort of psychotherapy.

Yet, if we consider the adage, “it takes two to tango,” one other dimension rarely discussed in clinical circles is how much a sleep professional’s reaction contributes to the negative outlook of a high maintenance patient. The sleep technologist’s reaction fits into this scenario as well. Obviously, as above, frustration may rapidly ensue if the patient is uncooperative or engaging in self-defeating behaviors. However, even stronger reactions arise thru the process of “transference” and “countertransference.” These are fairly technical psychological terms, so you may wish to read more about them elsewhere. For simplicity, though, just think of the last time someone really pissed you off because he or she reminded you of someone else who pissed you off in the past. That’s transference in a nutshell.

While most physicians are taught (but usually not well-trained) a little bit about these factors known as transference and countertransference, it seems unlikely sleep technologists receive this training. At our center, we make sure that sleep techs understand that if and when they experience a strong negative reaction to a patient who tends toward rapid rejection of PAP therapy, then it is essential to rapidly “look in the mirror” as soon as possible, because that patient is all but certain to be reminding the sleep tech of someone else. The same exercise is useful to any healthcare provider, including doctors. This “resemblance” may arise from how the patient speaks or behaves, and most medical professionals may not immediately realize what is happening at the time. Typically, it is the patient’s physical appearance, facial expressions, mannerisms or other behaviors, which remind the healthcare provider of some other person or situation from the past in which a conflict or troubling relationship arose. 

So, the sleep tech or sleep doctor’s reaction, called “negative transference,” unfolds as if this provider were looking at the patient as a composite of the actual patient coupled to the unpleasant person from the past. Until you undergo some training in this area, the process is almost always unconscious. With training, a person can often spot the internal feelings that arise as coming from a past relationship. And, it is essential to learn this skill to avoid a “counter-transference” response in which the provider reacts to this individual as if the figure from the past is re-stimulating the old problematic relationship. The counter-transference then is the signal or flare in the sky, so to speak, that the medical professionals response is somewhat or frankly over the top. The sleep tech or doctor now needs to step back to reflect and take a closer look at what just happened. In so doing, they will realize the anger is unhealthy and not fully directed at the patient sitting in their presence. In time, a trained professional learns to feel the anger rising and immediately detects no rational basis for so much intensity and then immediately snaps to how this patient is reminiscent of the trigger from the past.

One telltale sign of a doctor or tech especially vulnerable to a transference/counter-transference response is a verbally expressed dislike for certain patients: “I really don't like dealing with that type (fill-in-the-blank) of patient. It is true that some patients may be more complex and therefore more challenging to help, but that in fact is the role of doctors…to try to help someone in need so they can improve a health condition. Nearly all medical providers are susceptible to these reactions, which are particularly unfortunate when dealing with the types of patients we having been discussing in these last three posts. Patients with fear, social emotion or grief responses clearly might trigger unpleasant responses in some medical professionals who have not yet learned how to master these transference and countertransference experiences.

In sum, while this information is most important for identifying patients who rapidly reject PAP due to emotional responses, it is equally important to help physicians and sleep techs recognize the important role they can play by learning new skills to enhance their interactions with these vulnerable patients.


Barry Krakow MD

Author

Dr Krakow’s 27 years of sleep research have focused on the complex relationship between physiological and psychological sleep disorders. Dr Krakow currently operates private sleep medical center, Maimonides Sleep Arts & Sciences, Ltd., and serves as Classic SleepCare’s paid Medical Director.



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