"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?
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? 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.