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.

Shara Yurkiewicz is a medical student who blogs at This May Hurt a Bit.

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  • http://www.facebook.com/people/Craig-Koniver/100001463176810 Craig Koniver

    Thanks for your insight. I actually think that most patients do have a “sense” of what is going on with them. I completely agree with you that this question is critical. And the language we use to converse with the patient also matters. Modern medicine is defined by the negative. You have this, so you have to do that. Far better, I think, to allow the patient to create their own path of healing that includes our advice and perspective. But, we need to remind ourselves that we, as physicians, are not the end-all, be-all for the patient. Far better for the patient to intuitively connect to themselves. Most of disease represents a life that has become disconnected from meaning on some level. Good for you to point this out!

  • PJT27

    Just this past week, Anonymous Doc had a somewhat different take on this same concept:

    http://anondoc.blogspot.com/2011/09/its-interesting-when-patients-have.html

    Sometimes, it pays to allow the patient some space to ask what he really wants to ask, no matter how ridiculous it sounds at first.  Medical school is a good time to work on this skill, so you’ll have more polish as a resident.  Keep at it.  You’ll find the right words, and less is probably more.

  • Shara Yurkiewicz

    I love that post; thanks for linking. I still relate more to the patient on that one! I ask my physician similarly odd/unfounded questions, just in case something clicks and a connection can be made. I try not to let the strange looks I receive bother me…

  • http://www.facebook.com/profile.php?id=535135490 Anne Frates

    bout that cirrhosis: the patient may have had haemochromatosis, in which case he may never have had a drink in his life, and still gotten the disease. Not fair to make such an assumption.

  • http://twitter.com/GlassHospital John Schumann, M.D.

    Shara-nice piece.
    I like to ask those explantory model questions frequently. Agree that understanding the patient’s framework for illness or condition is helpful in understanding so much.

    I must say that frequently, I get an answer something like: “How should I know? YOU’RE the doctor!” 

    The first time I got that, I was taken aback, and skipped a beat before proceeding in. Now that I expect it, it’s usually worth a good and disarming laugh and opens new avenues in the dialogue.

  • http://drinkingfromthefirehose.wordpress.com/ Thirsty Scholar

    Shara – as a current third year medical student, I remember all too well the feeling of being “non-therapeutic” or an “annoyance” during the first two years (and of course in many aspects of the third year).

    So, whenever you are interviewing a patient, make it your mission to make their day a tiny bit better (it’s the least you can do …). Ask your patient, directly “What can I do for you?” You’d be surprised by the answers – and you’ll learn to make some intelligent recommendations when you get the inevitable blank stares. Suggestions: blankets, water/cracker refills (if diet plan allows), turning up/down the TV when you leave if remote out of reach.

    Most importantly, you can provide your patient with information and answer their questions (even if it takes a quick bedside uptodate since you’re probably on a wireless hospital network, should be easy). Sometimes you will have to relay questions to your attending. That’s fine. Asking the explanatory model type-questions can sometimes reveal gaps in the patient’s knowledge/insight, and you can fill them. Sometimes you can just lead in by saying something like “I know you’ve been in the hospital for several days and a lot of people have been in and out of your room, and a lot of things have been going on. Have you ever had any questions about what’s been going on? Is there anything I could help make sure that your doctors explain to you?”

    For instance, today in clinic I explained the meaning of antibody titers and MCA doppler flow to a patient with a ~GED education. That was fun, because it forced me to really understand the tests myself (fortunately the MFM fellow pimped me on both of them beforehand, so I had practice). I didn’t have to do that – I could have just said that she was “doing fine” when she asked “how are my antibodies” – but I felt that I owed it to her for giving me the privilege of examining her and speaking with her and her husband.

    -TS

    PS. The “What do you think caused your disease?” question seems awkward because it is… Tailor your question to your interview, and pick a different one for each situation. Carry a mental (or, written!) checklist of those explanatory model quesitions if its something that you want to ask in every interview …you could make that your style / priority.

  • Anonymous

    Well done, Shara – this is a discussion that I hope will motivate you to toss the inane “What do you think caused your disease?” question into your med student’s trashbox very very soon. What is the purpose of asking such a question?  To embarrass? To force personal accountability for having somehow ’caused’ this illness? To test the intelligence of one’s patient?

    I was a healthy, happy, non-smoking distance runner for 19 years right up until the day of my heart attack. The “Why? Why? Why?” question was one asked nonstop by all of my shocked family, hospital co-workers, friends, but most of all by ME.  Thank God no doctor, nurse or med student while I was recuperating in the CCU dared to ask this awkward question out loud, too, or I would have been tempted to smack them right upside the head. What they did instead was just take good care of me. Most heart attack survivors I know are already asking themselves that question every minute of every day.  Sometimes there is a clear answer, but many times there simply is not. More on this at “Heart Attack: Did You Bring This On Yourself?” – http://myheartsisters.org/2009/11/14/bring-this-on-yourself/

    Please stick with aiming to be that “comforting presence” for all your patients, Shara.  We already get quite enough “annoyance” from others during a traumatic hospital stay.

  • http://pulse.yahoo.com/_VEZZ4M2GKW474UNT6Q25D4XEHA Heidi

    I read that book and it had some good insights but another to take is not to just blame automatically blame the patient/family or assume “non-compliance” is why your recommended therapy isn’t working – the little girl had a particular seizure disorder which is very difficult to treat and even with the best treatment has an unhappy prognosis –
    it is understadable that the frustrated family would stop giving their child medicines that didn’t help.  I think if her Pediatricians had referred her to the Pediatric neurological specialist much sooner than they did a good deal of the blame game could have been avoided …

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