Staying the course with dry eye treatment
It can be a challenge to determine if a treatment plan is not followed because of nonadherence or noncompliance.
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Have you ever had one of those days? Or weeks? Heck, have you ever had one of those months where it seems as if none of your patients with dry eye disease are following the plan you both agreed o n 3 or 4 or 6 months ago? Of course you have.
It boggles the mind, at least it boggles my mind, that so many of my patients with DED return to the clinic complaining about any number of classic DED symptoms, and yet they admit that they have not been treating their disease as I thought. Some of the problem is clearly an adherence issue: There are external barriers or challenges that make following a treatment plan challenging. However, even though we are not supposed to use this term and what it implies, it has become clear to me that this failure to follow a plan is sometimes a compliance issue.
Patients are making an active decision to chart an alternate course despite convincing evidence that what they are doing is not working.
This is not a new phenomenon by any means. Our colleagues in rheumatology, neurology or pain management would share a knowing nod with us. DED is actually a chronic pain syndrome that has much in common with various types of other inflammatory pain syndromes such as arthritis. Once aberrant sensory patterns become established in the central nervous system, DED seems to behave in a manner that is similar to fibromyalgia, another poorly understood disease marked by both chronic pain and patterns of behavior that are difficult for a managing physician to understand.
Still, having identified these areas of overlap, I find it helpful to look at each of the “independent thinkers” and try to divine where they are on the adherence/compliance scale. What are the barriers that prevent them from staying on a particular treatment plan? This can be maddening. Check that: This is always maddening. No matter why they have stopped their treatment plan, you are looking at a massive time sinkhole for this visit. Still, in order to have any chance for successfully improving the symptoms of these patients, you will need to spend the time at least once. Doing so in a logical manner, one that is as judgement-free as possible, will give you the best odds of succeeding.
Our EMR will sometimes make it difficult to uncover the most important historical details. No matter how good your techs are at taking a history, when the first paragraph on the computer is principally about what the patient is not doing, you need to sit back, turn away from the screen and go old school on the exam. Do take a moment to look at the actual symptom survey to see if there are any clues in the details that might not show up in the score. Take a deep breath; remember, you are going to be here awhile. The most important question is the first one because it will set the tone for the rest of the visit: “So, Mrs. Pistolacclioni, how are your eyes feeling?” Make that first inquiry about them. If your first question is about you, and why your patient did not follow your plan, you will double the amount of time it will take.
Plus, you never know; sometimes your patient is not being either noncompliant or nonadherent. They actually feel great!
No matter how long I do this, I am routinely reminded of the American (read: developed world) medical mindset. We live in a Tylenol society. If you have a headache, you take a Tylenol and in 30 minutes your headache is gone. As a society, we are sold on the “cure” philosophy, especially with diseases that have significant symptoms. No matter how much education you provide, some of your patients just will not understand the chronic nature of DED and the need for ongoing treatment. If your exam goes on to show an objective improvement that corresponds with symptomatic relief, your conversation has just become equal parts celebration and how can we continue to celebrate. This visit usually ends well.
More often is the case in which your patient tells you they feel lousy. They really want to blame you for this, of course. At this point in the exam, it is perfectly reasonable to point out that they have not followed the course of action agreed upon at the previous visit and to ask them why. Your choice of therapies may, indeed, turn out to be ineffective, but at this precise moment, neither you nor your patient have any way to determine that. Are there forces outside of their control that prevented them from following your instructions? This implies an inability to do so; they did not follow the program because external barriers were seemingly insurmountable. Perhaps there was an insurance coverage issue, whether real (they have not met their deductible) or presumed (the pharmacist quoted them the list price of their immunomodulator and they walked away). Maybe a bottle or dropperette is too difficult to use. Stuff like that. As hard as it is to dive back in and reboot, nonadherence usually is surmounted by gentle education, encouragement and (sadly) filling out a preauthorization.
Noncompliance is much trickier. By definition, it implies a willful choice on the part of your patient to not follow your recommendations. Once upon a time, “compliance” was the catchall phrase used to describe all instances in which a patient failed to follow instructions. The implication of choice on the part of the patient explains the rationale for the movement away from this use. Nonetheless, in some cases (sadly prevalent in DED and other chronic pain syndromes), patients choose not to follow a plan. Rarely, you can uncover a fixable solution. For example, vegans may not even agree to use HydroEye (175 mg fish oil per dose; ScienceBased Health), so a firm move to intense pulsed light is an option. Both nonadherent and noncompliant patients may have medication side effects such as stinging and burning on instillation. Both need coaching if these are of mild severity and/or short duration.
Why is your patient not accepting your treatment? It seems to me that there is something truly different about thought processes when you are in near constant discomfort. Despair and fear seem to create distrust. You, the doctor, cannot escape the feeling of being tested, being on trial. It seems as if this visit almost always includes a grilling on why you have chosen a particular treatment rather than the one they found on WebMD. The surprise second opinion might pop up near the end of the visit. I believe it is important to listen to this patient explain why they did not comply, and then it is equally important to firmly reboot the therapy you have chosen.
If you are the first or second DED doctor they have seen, prepare for them to leave your practice. That is OK. If you are No. 3 or 4 (or 7 or 10), your firm conviction in the process may give them the confidence to commit to following your plan. These visits are always exhausting. Always hard. At the end of the day, always de-escalate. Never argue. Defend your chosen course of care in a dispassionate manner and assert that the patient always has the final say. Remember that you are not the one with the disease — you are the one committed to helping them overcome their symptoms. It should never be personal.
Patients do not always follow our suggestions. Patients with DED tend to travel this road more than those with other diseases such as glaucoma or macular degeneration. Making the determination that their deviation from the plan is due to success, nonadherence or true noncompliance can help you to set the tone for how these very difficult office visits proceed.
- For more information:
- Darrell E. White, MD, can be reached at SkyVision Centers, 2237 Crocker Road, Suite 100, Westlake, OH 44145; email: dwhite@healio.com.
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