Many factors influence a patient’s decision to use PAP therapy. Most frequently mentioned are issues regarding masks or pressurized airflow. For others, it may be problems with humidification or figuring out the set-up in the bedroom. Though these concerns are common and highly relevant, there exists a certain group of patients who reject PAP therapy even before they attempt it or immediately after first exposure in the sleep lab. These patients’ decision-making is almost invariably governed by emotional responses that may prove to be outside their conscious awareness. Or, if they recognize their emotional reasons for rejecting PAP therapy, they may feel inhibited about discussing them.
Not much can be found in the scientific literature about patients who rapidly reject PAP. A recent paper discussed the putative Type D personality style (1), from the field of psychology, as one possible explanation. These individuals may experience more negative emotions and may have difficulty discussing these feelings. Whether or not sleep apnea patients need yet another label to explain their refusal to use PAP therapy (e.g. non-adherent, non-compliant, etc.), it nonetheless may prove worthwhile to delve deeper into these emotional responses on a case-by-case basis.
In some of my earliest work with OSA/UARS patients, among married couples I was impressed with how large a role is played by feelings of shame or embarrassment in the acute act of refusal. I recall a scenario in which one woman could not put her mask on until all the lights were turned off in the bedroom to avoid her husband seeing her. In another case, while aiding a female patient during a PAP-NAP, she broke down sobbing about how her husband had ridiculed her for using such a “stupid contraption.” As you might imagine, neither of these women, to our knowledge, ever achieved regular use of PAP therapy. Clearly, marital therapy would have been required and was recommended by myself and our staff to these patients. Yet, as is not uncommon with adverse emotional experiences, the majority of individuals reject psychotherapy, because it would dredge up even stronger emotional responses.
These are just two examples but in fact there are hundreds of different ways in which a person rapidly develops a strong emotional response to PAP therapy and then rejects the device with no further thought or discussion. “It’s not for me!” is a common declaration. The most common emotional responses linked to this rapid rejection are what are known as primary or deeper emotions. Fear and anger are two prominent feelings in PAP rejection. Embarrassment, shame and guilt, the triad of what are called “social emotions” are common as well. Last, there is the feeling of sadness or a sense of loss that might play out with terms like “helplessness, a sense of inadequacy, or depression,” but in most of these instances there is a deeper sadness, almost a grief like reaction, which might be exerting a major influence over the individual.
If we can explore these emotional responses for what they might mean and how they might surface with certain patients, it is conceivable we may be able to redirect the individual in some manner to either work through the emotions directly, or find a therapist to help with this process, or otherwise plan some strategies to help an individual minimize their reactivity to having to use the PAP device.
The emotion of fear, which of course often can also manifest as either anxiety or anger is a very legitimate emotional response for some early refusers. Even if at some point the fear is understood to be irrational, it still makes perfect sense if not common sense to raise the question: “who wouldn’t be afraid of sleeping with a mask if you’ve spent your whole life not sleeping with one?” More precisely, how could someone expect to breathe with a mask on his or her face? And, wouldn’t the thought or image of such an exercise trigger anxiety or fear on the spot? PAP is perceived by these individuals as a threat, again regardless of whether it is a rational or irrational threat. Indeed if you put the mask on your face and you suffer a claustrophobic response, then the threat perception is quite rational, and the individual appropriately rips off the mask.
Most fear manifests as anxiety or anger among people who have difficulty acknowledging their fears. For myriad reasons, it is simpler to manifest the fear by not recognizing it directly, but instead sensing feelings of nervousness, discomfort, or uneasiness (all forms of anxiety) or to trigger a fight or flight response (a natural component to fear) by generating anger, which of course is a great way to mobilize your resources to run from or attack the object to be feared. These responses are also known as secondary emotional processing behaviors, because the mind-body are uncomfortable dealing directly with the primary feeling of fear. People who operate in this manner are often very problematic communicators regarding health issues, because they are much more prone to deny they are afraid of something. Rather, they tap into the anxiety or anger to prevent themselves from feeling fear, but even then, some of these folks will not admit they are feeling anxiety or anger, because they do not like talking about feelings or emotions in any way whatsoever.
The fear-sensitive patient is one of the most difficult to assist, because he or she may cut off the discussion very rapidly as agitation or ire rises during a pre-sleep desensitization. In dialogue, you would hope you could offer a rejoinder like, “you seem anxious or angry about this whole sleep thing, would you like to talk about it before we go any further?” But, in fact, the patients’ feelings may be so strong and negative, this direct approach may backfire with a response like, “I don’t appreciate your suggesting you know what I’m feeling; I just don’t want to use this stupid device; why isn’t there a pill I can take?” Such defensive responses only reconfirm a patient’s fears and do not lead toward a positive pathway. Thus, a sleep tech or sleep doctor at this point would typically offer, “let’s go back to square one and talk about your diagnosis of sleep apnea.” Even so, don’t be surprised if this patient would then say, “and that’s another thing, I had a horrible night in the sleep lab, I honestly don’t know if I have sleep apnea. How can you trust just one night in the sleep lab?” Again, these statements almost always come from people who are afraid of both the diagnosis and the treatment of sleep apnea. Many of them will not even consider oral appliance therapy or surgery. Given our pharmaceutical culture, these folks often act surprised if not shocked that there is no medication to treat sleep apnea.
We have seen several of these patients in our sleep center. On the surface, they may act like troublemakers or oppositional adolescents who try to instigate conflicts between their own referring doctor and the sleep center staff. It becomes very difficult to help them, because their fears control virtually all their behaviors as they ambivalently seek to address their sleep problems. By suffering from so much fear about their sleep disorders, they struggle with efforts to rationally address them. In an ideal world, both the referring doctor and the sleep doctor would be in a position to rapidly spot this overarching fear response and come up with a unique plan for this patient. Yet, such a prophylactic approach may never arise; and, in truth, it may not be able to prevent the patient’s rapid rejection. As an aside I’ll address in a later post, these patients can also provoke negative reactions from their providers, which all but guarantees poor if not disruptive communications.
Sadly, one of the ultimate ways in which these patients are turned around is when a larger fear enters into their experience. When something bigger than a sleep problem like a stroke or a heart attack enters the picture, it is plausible that post-event reflections on mortality make the patient weigh the larger concerns and then reconsider the potential value of treating SDB. Here, some rationality emerges as the patient realizes SDB directly impacts blood pressure and cardiac function. Time-wise, it is not unusual for these patients to drop out of care for months or years and suddenly reappear after a severe medical illness pushes them to a brink.
Finally, it cannot go without saying nearly all these folks are really suffering a much deeper fear—deeper than the feelings linked to using a PAP device and deeper still than the fears generated by suffering from a serious sleep disorder that compromises breathing. At bottom, most of these patients harbor very strong and frequently disguised fears about death in general and their specific mortality. This fear is almost never one the patient will discuss easily or openly and may only do so with a spouse or clergy if that. Even then, the patient has difficulty recruiting what might be called their “emotional intelligence” to be able to sort through these feelings and arrive at the obvious rational choice to treat SDB so they can live longer and at a higher quality of life. Regrettably, these deeply entrenched fears about one’s mortality freezes most of these patients into classic states of denial, abrasive personalities, fractured communication styles and unpleasant encounters for them and their healthcare providers. Most of them would benefit greatly from short-term psychotherapy, but few will follow this recommendation. Thus, PAP therapy progress in such patients often follows an extremely slow and gradual course, but which lamentably has on rare occasion comes to an abrupt halt with the premature death of the patient.
ReferenceBroström A1, Strömberg A, Mårtensson J, Ulander M, Harder L, Svanborg E. Association of Type D personality to perceived side effects and adherence in CPAP-treated patients with OSAS. J Sleep Res. 2007 Dec;16(4):439-47.