What do your patients fear?

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.

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About Ryan Madanick, MD

I am a gastroenterologist at the University of North Carolina School of Medicine, and the Vice-Chief for education in the Division of GI & Hepatology . I specialize in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD. I can be followed on Twitter: @RyanMadanickMD (he/him)
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10 Responses to What do your patients fear?

  1. Pingback: Patients and consumers | Abetternhs's Blog

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  3. Tami Brown says:

    As co-founder of the International Autoimmune Arthritis Movement (IAAM) and project manager for our organization’s media Awareness Hotline, wherein the public is encouraged to report inconsistencies and/or misinformation they observe in the media relating to autoimmune arthritis and its treatment, I wanted to make you aware of certain complaints we received pertaining to this article.

    The issues being reported on our Hotline regarding the article in question dealt with health-related anxiety and how it could possibly “create” your illness. In other words, if I understand the article correctly, if you have an illness and it’s not getting better, you may be holding yourself back due to a particular fear you have that is most likely a misguided one, and one which you should be opening up and speaking to your doctor about. Some autoimmune arthritis sufferers told us they felt a bit insulted by this overgeneralization, which seemed to tell them that if they could somehow turn off the anxiety and depression (which, by the way, quite normally tend to go hand-in-hand with chronic illness), they would miraculously be cured of their ailments.

    Although the role of mental health certainly should not be overlooked in the treatment of any serious or debilitating illness, many of us who suffer from autoimmune arthritis diseases, which are chronic and often progressive in nature, were also somewhat taken aback by the comment , “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.” Those of us with Lupus, Rheumatoid Arthritis, and the like would beg to differ, as these diseases can and do cause death in a number of cases each year. And I don’t know that “annoying” is exactly the word for the excruciating pain and obnoxious fatigue, recurring fevers, nausea, and other systemic symptoms common to autoimmune arthritis illnesses. I would think annoying is something more akin to poison ivy or the common cold!

    This is not to say that all patients diagnosed with these illnesses should live in fear, and we would agree that any patients who are harboring such fears could benefit from airing those fears to their doctor, a support group, or with a therapist. We maintain that many of us indeed do those very things in order to keep our anxiety in check. And when we have exhausted those avenues and the anxiety still remains at an intolerable level, our doctors can and usually will add anti-depressant and/or anti-anxiety medication to our already full medicine cabinets.

    My point here is that the article makes it seem as though patients with serious illnesses who harbor these certain “fears” are holding back their own recovery. But I have yet to see an autoimmune arthritis sufferer who, after unburdening herself of her fears in a support group or once put on anti-anxiety medication, found that her rheumatoid arthritis or lupus went into complete remission. The fact of the matter is that autoimmune arthritis sufferers face their fears each and every day when they wake up in the morning.

    It is our mission at IAAM to educate and further the awareness of autoimmune arthritis diseases and to provide clear, concise, and complete information to the public, we would respectfully request your article – and in particular the aforementioned sentence – be reworded to verbiage less insulting to the autoimmune arthritis community. Further, might I suggest an interview with our CEO and Founder, Tiffany Westrich, to speak further on this issue, so that she might give you the perspective from the actual autoimmune patients? IAAM would love to make ourselves available you as a resource and help in any way we can to bring the factual information to light. What is important is education and awareness, and we would appreciate your help!

    Thank you, and please feel free to contact me at any time.

    Tami Brown
    Co-Founder/Officer
    International Autoimmune Arthritis Movement
    http://www.IAAMovement.org
    Tami@IAAMovement.org

    • Tami:
      Thank you for your comment. I meant no disrespect to anyone, especially those with debilitating autoimmune arthropathies, by stating that chronic conditions are “annoying”. Certainly we do know that these conditions can be life-threatening.

      I should have made the intent of this blog post clearer. The intent was to predominantly help doctors and their patients who frequently defy traditional diagnostic categories, or who do not improve as expected, not those that could do organ damage or threaten life to the best of our knowledge. These conditions include predominantly chronic ailments such as irritable bowel syndrome or fibromyalgia, although this post can be applicable to most disorders. While IBS or FM can be associated with depression, in and of themselves they are not life-threatening.

      I see how the choice of the word “annoying” could be misconstrued. My intent was to convey the difference between a symptom that indicates a life-threatening illness, and one that will predominantly affect a patient’s HRQOL. With chronic conditions, HRQOL can be markedly impaired, much worse than a mere annoyance, as you state. And certainly I did not wish to insinuate that dealing with a patient’s fears would result in a miraculous cure for any condition, especially one that destroys joints and vital organs.

      The blog post was also not meant to generalize to ALL patients in a GI, rheumatology or dermatology office. Each of these specialties has patients that can have organ- or health-threatening illnesses. Nonetheless, most patients in such practices do not, as opposed to other specialties such as nephrology or oncology.

      If this article is offending to your community, I offer my apologies for the misunderstanding. I would be glad to discuss further if needed.
      RDM

      • Tami Brown says:

        Dr. Madanick, thank you so much for your very thoughtful and detailed reply. It really helped explain your article much better, and I do believe I, and much of our autoimmune arthritis community, will have a much firmer grasp on what you were really trying to say. However, as your article still stands as written both on this blog and as published on KevinMD (http://www.kevinmd.com/blog/2011/05/health-related-anxiety-patients-complex-problems.html), which is actually the article about which IAAM’s Media Awareness Hotline (a program created to allow the public to report incorrect or misleading information in the media) received the complaint, we at the International Autoimmune Arthritis Movement would respectfully ask that you consider revising your articles to incorporate the information you have restated in your explanations here, to us, so as to clarify the points and ensure the verbiage is non-offensive to the chronically ill/autoimmune diseased public. IAAM would be happy to make ourselves available to help with any reviews or in rewording, if you would so choose; we would love to be a resource for you. Our organization strives to bring about awareness and education regarding autoimmune arthritis diseases to the public, and we would appreciate your help. Please let me know if I can be of any assistance to you. Thank you.

        Tami Brown
        Tami@IAAMovement.org

  4. Kelly Conway says:

    Thank you for your article on what patients fear. I feel that the emotional needs of a patient with a chronic medical condition is an important piece that needs to be addressed more frequently. I do however, have to disagree with the following statement: “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.” I think the statement is way too broad to make for all people with rheumatological or dermatological diseases. Diseases such as Rheumatoid arthritis, Lupus, and Scleroderma CAN be life threatening. As can many forms of skin cancer.

    I am a patient living with rheumatoid arthritis and a chronic skin condition related to my autoimmune diseases. To maintain a functional quality of life, I take biologic drugs, and even chemotherapy drugs. These drugs do have links to types of cancer that can develop and lower the body’s ability to fight infection. I fear people with colds and flu. When I get sick, it take me weeks to get over a common cold. It’s a trade off between taking risks of getting an infection or being able to walk/work/live independently. I knowingly take this risk even though it causes me some concern and even fear at times. Of course, there are rheumatic and dermatological diseases that can be “annoying” but your statement appears quite broad and gives the non-informed reader the idea that rheumatic illnesses (and dermatologic) are themselves “annoying”. The RA community lost three well-known advocates in 2011. All three died from complications from their diseases. I personally know 3 people who have died from skin cancer.

    I am a volunteer with the International Autoimmune Arthritis Movement (www.iaamovement.org) and we strive to provide the public with accurate and informative information regarding various types of autoimmune arthritis. Although I do see the point you are making in terms of some conditions not causing “fear of death”, I think your generalization of two specialty areas is misleading and incorrect. If you get to know patients living with autoimmune arthritis, I’m sure you would hear a very different point of view.

    • Kelly:
      Thank you for your comment. I believe most of your concerns are discussed in my reply to Tami. This post surely did not mean that various conditions are NOT life-threatening; instead many people believe they have one when indeed they do not. Such an anxiety can be unexpressed in the doctor’s office, so it is important to understand that a patient fears this is the problem.
      RDM

  5. Tristan says:

    Well. I am also an autoimmune arthritis patient who has spent a significant amount of time in ICU/CVICU with cardiac complications and cardiovascular complications related to Rheumatological illness. Most persons in Rheumatological settings are not, in fact, dealing with Annoying diseases. I do agree that anxiety is a large part of the clinical setting that needs to be addressed. However, I caution as a patient who experienced undue delay of critical medical treatment and required more significant interventions (cardiac bypass) as a result of the delay of investigating my original concerns (and instead writing them off to anxiety) of writing off patient concerns without looking. I told my initial physician what my concerns were and it wasn’t until a year later that I was adequately treated and instead I had accepted an “anxiety” diagnosis and medication to treat what was a cardiac condition that eventually snowballed into a critical situation. I did not deny testing or thorough investigation I just simply did not fit the clinical picture of a cardiac patient – It was very obvious what the problem was though once an MRA was finally ordered. As a 27 year old I did not know what an MRA was, I just knew that there was something wrong with my cardiovascular system. I clearly stated this concern at the outset and was ignored. I did not think it was lifethreatening at first but it became lifethreatening. My original complaint? “I think I’m having a problem with my heart and here is why: and stated my history and complaints which fit a patient with cardiac problems” It takes time to get adequate referrals and testing for some of the diseases. It is my job as a patient to tell you clearly and accurately what my concerns are it is your job to investigate – not tell me how I should ‘feel’ about it. Despite telling multiple physicians outright what my concerns were I was written off and I was heavily medicated for anxiety attacks. My anxiety attacks were not anxiety attacks, they were heart attacks and TIA’s. I did eventually develop health related anxiety but it was a response to not getting adequate medical treatment I needed and the Cause Of my medical problems…by the time I did get adequate treatment it was so invasive there would be something wrong with anyone who DIDN’T get anxiety as a result of what I went through… Anyway…. I read your reply to Tami and I am getting a clearer picture that you are intending to target the clinically difficult to manage patients that have a wide variety of nonspecific complaints but for which there may be minimal actual clinical evidence to support the existence of a life threatening course of action. I do agree that this is a problem in many situations but I also want to additionally comment that most patients escalate to that form of anxiety because of long standing, chronic discomfort and unaddressed, unclearly communicated concerns and complaints(at both ends-literally as well as patient to physician). Many of which do have psychological origin but my solution to addressing this is more awareness that anxiety needs to be treated concomitantly at the onset of any kind of condition that you are very well aware of will become/or seem to become chronic. Open that door more to the elephant in the room and help the profession and patients develop a more positive attitude towards anxiety so we can get acceptance of this very normal response to human suffering. Patients and doctors both need to get their big girl/big boy panties on more often and communicate more clearly and sometimes that means asking questions that may be uncomfortable. Period… I myself dealt with health related anxiety but most of my anxiety disappeared once I received the adequate medical treatment I needed (once my cardiac issues were resolved so were my anxiety problems for example but sometimes for certain procedures I need help with my anxiety because my memories of ICU/ stables/ invasive therapies and reasonably acquired trust issues. Honestly, I think that health related anxiety is very common with any chronic condition and should be treated concomitantly. I have had better luck getting this under control with physicians who have worked to develop a very frank discussion on this matter and treat it first to get it out of the way so that we can address everything else. If this was treated more often concomitantly (and more ahead of time instead of long after the medical exploration has been exhausted of the original complaint or well into what will obviously become a chronic complaint from the patient I think the tax on the overal professions would be lowered) Especially when the profession is already aware the complaints they are seeing will likely be a chronic long-standing problem) I personally think you are obligated to advocate for your peers to include the addressing and treatment of health related anxiety *before* it snowballs into what you describe here. With that said – I am also very greatful that you open the door here to bring up this topic because it is not addressed often enough from multiple sides of the equation. I think there are multiple reasons for that and one of them is the long standing public rejection of mental health problems – many of which are very common, is a normal brain response to survival and can certainly not help quality of life issues surrounding any form of chronic condition. Thank you

    • Tristan, thank you for your thoughtful insight. As noted, it is very important NOT to DISMISS a patient’s complaints as PURELY related to anxiety. I advocate an approach that factors in all aspects of health, the biologic (life- and organ-threatening), the psychologic, and the social aspects. RDM

  6. Tristan says:

    Well, I am also a volunteer for IAAM and a patient advocate but my biggest personal concern other than my own 2 cents on patient related anxiety is that Rheumatology is experiencing a significant shortage of specialists and has significant need. Categorizing rheumatology into ‘annoying’ just sets a particular wheel in motion that is just not beneficial in any way, shape or form. I cannot comment on Dermatology because I am not educated on Dermatology but we need more Rheumatologists. Kids, Adults and Seniors are dying and suffering significant illnesses because there are simply not enough resources in Rheumatology. I would like you to clarify your article in regards to the Rheumatology being associated with annoying illnesses. I value my Rheumatologist – she has saved my life and quality of life and it is an insult for you to categorize Rheumatology with annoying for subspecialty care. I think if you spent time in Rheumatology you would see a very different picture. Thank you.

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