As an academic gastroenterologist at a tertiary care university medical center, I often see patients who have failed traditional therapies that many of my colleagues in the community have tried. Over the past several years my practice has evolved, from dealing with predominantly the medical aspects of my patients’ diseases to embracing the biopsychosocial model of illness. One of my colleagues has been the world leader in patient care and research in the field of “functional gastrointestinal disorders” for several decades, and he has taught me aspects of caring for patients with these complex problems.
One of the most fascinating aspects I have learned to explore is fear. “Health-related anxiety” is a theme that many of our patients express, whether or not they are able to state it consciously without initial prodding. In my experience, health-related anxiety falls into one of the following categories, which can be remembered by the mnemonic MIDDLE:
- Malignancy: This is probably the most obvious one. Every doctor has been asked a question like these: “Do I have cancer?” or “How do you know it’s not cancer?” This fear is often an easy one to allay for patients, but occasionally patients will have a fixed belief that they harbor an undiagnosed (or undiagnosable) malignancy.
- Infection: Often patients are worried that they have an unusual infections that you have not found yet, possibly fungal or parasitic. These concerns are unfortunately fanned by mainstream media (Media-Based Medicine; #mbmed) and some docs/practitioners who push concepts like (and subsequent therapies for) chronic candidiasis and Lyme disease as the end-all-be-all of their “clients’ ” problems.
- Damage/dysfunction: No one wants their organs to be damaged or functioning improperly, but there are those patients who are concerned that organs, or certain parts of their organs will sustain damage or stop functioning properly. For example, my patients with heartburn often will tell me that they are worried that the acid will “eat up” their esophagus, despite endoscopic evidence to the contrary. However they often do not take the next step in thinking, what we call “outcomes”. This might be because of a concrete thought process. Minor mucosal erosions have very little if any clinical importance, but it can be quite difficult to explain this to a patient who sees an image or a diagnostic test report with an abnormality.
- Death: Well, I said Malignancy was probably the most obvious one…maybe I lied. But in reality, it doesn’t seem that patients are often afraid that their problems are going to kill them, especially in subspecialties like dermatology or rheumatology, which are similar to GI in that chronic conditions are more annoying than they are life-threatening. That said, there remain patients who cannot escape the fear that their problem will kill them. If it is engrained in their mind, such a fear could be evidence of an underlying phobia that requires psychological support.
- Limiting: Whereas cancer might be the most obvious, this category may be the least, but potentially the most common. What limits in their life are they afraid the problems will pose? Do they have a persistent cough, which makes them afraid to go out in public or speak to others? Or maybe they have a rash that will limit their ability to get a date? Many of these issues are really HRQOL issues that could easily be fears that you can address.
- Exceptional: This category is last for a reason; it is the one that is least likely to come up, in my experience. By exceptional, I mean that the patients believe they are the exception to the rule. They might fear they have a very rare condition that is incurable. Or they might fear that they will be the 1 in 10,000 who will develop the side effect or complication. Similar to the issue with death, if such a fear is engrained in your patient, it may be evidence of a true anxiety disorder.
Some of these fears are particular to GI, but in general the concepts can be applied to any specialty or subspecialty. When you have a patient that seems to be having difficulty with some aspect of their progress, especially if it is persistent symptoms or nonadherence to diagnostic testing, ask the patient to elaborate their concerns. Explain to them that it is important for you to know their concerns so that you can help break down barriers to communication and your relationship that may exist so that you can provide the best care you can.
When you find the time to address this issue, do NOT say, “Are you afraid of cancer?” Yes/no questions are a sure way to squelch open communication. Instead, ask a more open-ended, non-judgmental question, like, “What types of things have really been concerning for you about your problem?” If they don’t understand, then sometimes a nudge in the direction can help, such as, “Well, some of my patients are concerned that the pain they have might be a cancer.”
You might think you are opening Pandora’s box, but as the saying goes, “A stitch in time saves nine.” Take the extra time to explore fears early on, and you will save both yourself and your patients time, money, and a lot of angst later on.