Health related anxiety in patients with complex problems

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 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 though 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.

Ryan Madanick is a gastroenterologist who blogs at Gut Check.

 

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  • http://www.emotioinalfitnesstraining.com Katherine Levine

    Don’t know if my original comment whet through. I directed a mental health crisis team in the Mott Have section of the South Bronx. The book Amazing Grace categorized its many life threatening illness–AIDS and Asthma being to two most prevalent. Any life threatening illness is traumatic and all health care workers need to know about trauma and trauma reactions. A child who almost smothers is traumatized as are his or her siblings and parents. Bruce Perry has done amazing work on trauma reactions. Here is a point to some of his articles. http://www.traumacentral.net/TC_brucedperry.htm

    Stay strong and help others do the same.

  • http://drsamgirgis.com Dr Sam Girgis

    Anxiety plays a very important role in the presentation, evaluation, and treatment of a patient. For example, let’s look at white coat hypertension. There was a patient who always had elevated blood pressure when coming to the office, but when checked at home the blood pressure was normal. Taking the advise of his physician, the patient took the antihypertensive medications as prescribed. He was later admitted to the hospital with a diagnosis of “syncope”… later to be determined to be due to orthostatic hypotension. Anxiety played a key role for this patient, and most likely does for all patients.

    Dr Sam Girgis
    http://drsamgirgis.com

  • Finn

    Patients who hear you say that they have “failed traditional therapies” are not likely to open up to you about their concerns, because you’ve just said that their problem is their own fault. I know that’s not what you meant but it is almost certainly what they hear.

    • http://ryanmadanickmd.wordpress.com Ryan Madanick, MD

      Thank you, Finn. We often talk about patients “failing” therapy, and they also say it as well. This is common parlance that many people use in practice and the literature. I can understand your aversion to such a term and I certainly did not mean that patients did something wrong. The major issue is that we need to decrease barriers to adequate communication about such anxieties.

  • http://myheartsisters.org/2010/04/17/gender-differences-heart-attack-treatment-higher-death-rates-women/ Carolyn Thomas

    Thanks for this, Dr. Ryan. I’m glad you mentioned your recommended question: “What types of things have really been concerning for you about your problem?” This simple inquiry would be a particularly useful assessment tool for specialists beyond gastroenterologists. But focusing on “health-related anxiety” should not, in my humble perspective as a heart attack survivor, be considered as just a way to “explore fears early on”, but rather as addressing well-founded fear – the logical companion of many life-altering chronic illness diagnoses.

    The last four points on your ‘MIDDLE’ list of six, for example, cause severe anxiety symptoms in many heart patients not because they’re feeling needlessly afraid, but because they likely have extremely good cause to be afraid when they’re facing:
    - DAMAGE/DYSFUNCTION caused by heart muscle or valve damage
    - an increased risk of DEATH (recurrent MIs account for 14-30% of all hospitalizations for heart attacks, but are responsible for 30-50% of MI deaths)
    - LIFE-LIMITING consequences of their MIs (a “cough” or a “rash” would be a dream fantasy limitation most of us would trade in a flash for our crushing fatigue, extreme shortness of breath or debilitating chest pain)
    - EXCEPTIONAL circumstances (women heart attack survivors, for example, do represent exceptions to diagnostic and treatment protocols that have been largely developed and tested on male subjects for decades. A study reported by the American College of Cardiology suggests that men are 72% more likely to receive clot-busting drugs than women in mid-heart attack.)

    So survivors who actually experience these real-life scenarios may not be simply in the grip of an “anxiety disorder” and if they are – they have darned good reason to be.

    • http://ryanmadanickmd.wordpress.com Ryan Madanick, MD

      Absolutely, and thanks for pointing this out. Many times fears are well-founded.

  • http://drpullen.com health blog

    Our drive to earlier and earlier diagnosis, and lower and lower thresholds for diagnosing things like hypertension and diabetes lead to lots more patients with diagnosis to worry about too. This contributes to the often mistaken belief that it’s always better to diagnose problems early.