"What Do You Think Caused Your Disease?"

Our first assignment for medical school involved reading and discussing Anne Fadiman’s The Spirit Catches You and You Fall Down, which describes how a clash of two cultures (medical and recently immigrated Hmong), miscommunication, and misunderstanding led to tragedy.  Poignantly narrated, the book had the take-home message: if a patient does not agree with a physician’s reasoning why a disease developed and how it can be cured, then even the best treatment won’t help because the patient will not stick to it.

In the novel, Hmong parents believed that their daughter’s seizures were caused by spirits and not overexcitable neurons, so they relied on traditional healing methods (prayer and sacrifice) instead of medications.  Although perhaps the story represents an extreme example of a mistranslated message, unfortunately more minor ones do exist and can often impact care.

Does the diabetic patient understand why monitoring blood sugar is vitally important?  Why should someone with celiac disease avoid certain foods?  Does a smoker realize the extent to which he worsens his COPD when he goes through a pack a day?  Is it ever okay to have a drink when you have hepatitis B?  The answers to these questions help physicians understand how patients see their disease–and, as a consequence, what sorts of measures and discussions can best help them manage it.

Hows and whys from a patient’s perspective are called “the explanatory model.”  To boil it down, the conceptual framework includes:

What do you call the problem, What do you think the illness does, What do you think the natural course of the illness is, What do you fear?
do you think this illness or problem has occurred?
do you think the sickness should be treated, How do want us to help you?
do you turn to for help, Who should be involved in decision making? Why do you think this illness or problem has occurred? How do you think the sickness should be treated, How do want us to help you? Who do you turn to for help, Who should be involved in decision making?

No doubt these questions are key.  In fact, this is what we learn to inquire about during our patient interviews, somewhere between taking the history of present illness and the social history.

But, we are not doctors.  We don’t yet have the finesse or the time or the practice to incorporate all of these questions in a brief standard interview.  And, in my experience, what usually comes out is an ugly stand-alone question: “What do you think caused your disease?”

So far, patients I have interviewed have included those with congestive heart failure, arthritis, spinal cord damage, severe abdominal pain, leukemia, cirrhosis, and hepatitis.

I have cringed with awkwardness upon asking this required question.  How could a previously perfectly healthy 63-year-old recently diagnosed with leukemia possibly answer?  The patient with cirrhosis claimed he never drank.  The patient with hepatitis blamed an unsterilized tattoo needle from when he was 19 (which my preceptor later said was an unlikely reason).  I can only imagine the discomfort in the room when I pose a lung cancer patient this question.

I’m not sure how patients feel when I drop this inevitable inquiry.  They generally answer with “I don’t know” (which is completely understandable given the nature of many illnesses) or something unrelated.  At that point, I get even more uncertain.  I do not have the knowledge or authority to correct them.  It’s not my responsibility right now to comfort, diagnose, or treat them.  I’m not their physician, I do not report to their physician, I am not part of their care in any way, and I will never see them again.  I simply write down their answers to present later.  I feel guilty.  I feel tense.  I am embarrassed for embarrassing them.

My patient interviews are strictly non-therapeutic.  At best I’m a comforting presence and at worst I’m an annoyance.  Nothing about the above question is comforting.

Perhaps I should buttress it with additional questions so that it doesn’t land in the room from left field.  Perhaps I should phrase it differently.  But it’s difficult to improve when I’m there on a simulated fact-gathering mission without providing the logical consequence of treatment, relaying information to a care team, discussion, or counseling.

To the patients I have asked this question: I apologize.  I’m sorry that you may not feel comfortable disclosing to a 23-year-old first year medical student who is not a part of your care that your heavy drinking to cope with your divorce may have led to your cirrhosis.  I’m sorry that I had to ask you why you think you got cancer, as though I expect a philosophical discourse.  It’s just a contrived question right now for training purposes–a piece of a puzzle that is so out of context that it’s a disservice. In a few years, I promise I can try to help.

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4 Responses to "What Do You Think Caused Your Disease?"

  1. Emily Lu says:

    Hi Shara,So I definitely don't ask that question to every patient, but I wholeheartedly disagree that the question is not useful. For two reasons:1) It can give you some really useful information. It's like the initial question that we ask: "what brings you in today?" I tend to phrase the question more colloquially, like "what do you think is going on?" and for those patients that have (or think they have) some sense of what is going on, they will tell you. Their responses can give you critical information about the patient's mental state and cultural background, in addition to being useful to advise your diagnosis. Diseases manifest different ways in different people, and some people have some sense of when they are hypertensive, iron deficient, having a UTI, etc. from previous experience. 2) I find that this question provides a great opportunity to establish empathy with the patient. Using the patient's own words, you can tell them that you understand how they're feeling and are going to go advocate for them when you go talk to their doctor. That personal touch, to me, is one of the great benefits to patients having medical students interview them rather than going straight to a resident or attending.Speaking of which, don't downplay your own contribution to your patient's health care team! Remember – history plays a significant part of diagnosis, and we're in charge of figuring out as many of the details as we can about a patient's history. Even when I don't get all of the review of systems yet and specific questions pertaining to each complaint, I am able to go over the full breadth of issues, making sure that everything gets covered, so that the doctor going in can ask those more specific questions and already have some outline of what their plan will be.In short, there is absolutely no need to wait a few years before you can make a difference!

  2. Shara says:

    Ah, interesting. The difference with us is that we never relay any information to the patient's doctor. We don't even know who s/he is. The diagnosis is done, the patient is being treated (sometimes going home the next day), the history has already been taken numerous times.We simply present to our preceptors (who do not care for the patient in any way) and write up the results. Yours sounds like a much more useful contribution.

  3. ryanmadanickmd says:

    It is really most important to explore the explanatory model over the prolonged course of your treatment, rather than at a single moment, especially early on in a patient-doctor relationship. In some instances, especially the ones you mention, it can be awkward to bring it up. But as you get to know your patient(s), it becomes easier to weave it into your care.

  4. aek says:

    Using patients solely as a means to your ends of completing an assignment is unethical and clearly wrong.

    However, I agree with the above commenter who notes that you can, if you choose, bring empathy, genuine warmth and objective, nonjudgmental reflective listening to such an encounter. Learning about the meaning patients develop about their health challenges is an extraordinary privilege. Take full advantage of that and do not abuse it.

    You demonstrate sympathy in your post, but I’m not so sure about empathy. What do you think? The best to you as you navigate through these treacherous waters!