Medical decision-making among treatment options: The signature medical mistake of my life

     Dr. Jerome Groopman and Dr. Pamela Hartzband wrote a clear and insightful book, Your Medical Mind:  How to decide what is right for you.  They illustrate decision-making through stories about themselves and their patients.

     Dr. Groopman’s father died from poor care for a heart attack, back in the days when some doctors thought that removing the heart attack patient’s blood would unburden the failing heart.  As a reaction, Dr. Groopman became a “maximalist,” believing that modern medical interventions were generally good things.  Following that belief, when suffering from persistent excruciating back pain, he opted for aggressive surgery—spinal fusion--when merely waiting might have been preferable.  The surgery gave him lasting pain and debility; he called it “the signature medical mistake of my life,” with disastrous consequences.  It also gave him a long-term belief in making more nuanced decisions about treatments for himself and his patients. 

     Years later, his doctor advised him to take a statin to reduce his high cholesterol.  In light of the heart disease in his family, he knew he had to do something.  However, Dr. Groopman knew of a friend who had incurred lasting muscle pain, a common side effect of statins.  So he negotiated with his doctor to take a smaller dose of statins, and found that the smaller dose was great enough to lower his cholesterol, and yet small enough to avoid any muscle pain.  

Advice to patients:  Learn from the experiences you and your friends have had and your family history.  Consider them and your biases when making decisions about your medical treatment.  

Read another story about deciding among one’s options for medical treatment.

They brushed off my questions: Incorrect medical decision-making for a thyroid problem

I spent months being treated for acid reflux-like symptoms, and I found myself seeing doctor after doctor. They all treated me for acid reflux – a commonly diagnosed problem of stomach acid flowing backward from the stomach into the esophagus – and brushed off my questions asking if my problem couldn't be related to a thyroid condition. There is a history of thyroid problems in my family and my instincts kept telling me my problems were related to my thyroid gland. The doctors continued to tell me I just had acid reflux and I should keep taking the "little purple pill." I couldn't understand how I could so suddenly develop acid reflux. After all, I had always been able to eat anything I wanted and now even eating cereal and drinking water made me hurt.

After seeing several different local specialists and undergoing many, many tests, I referred myself to an endocrinologist (someone who specializes in thyroid diseases) at a large medical center for another opinion. Within five minutes of meeting this endocrinologist, he was convinced all of my symptoms were related to being hyperthyroid (too much thyroid hormone). He explained to me that when you are hyperthyroid all the systems in your body are hyper (overworking) and can give you symptoms I was experiencing like acid reflux! I was never so relieved – I had finally found someone who believed that my symptoms were related to a thyroid problem. Further testing confirmed his diagnosis, and surgery was scheduled to remove my thyroid gland. It seems my instincts were right after all. Since having surgery (I now need daily thyroid hormone replacement) my symptoms have disappeared and I no longer need "the little purple pill" for acid reflux.

My only regret is not finding the right doctor sooner. I could have avoided many unnecessary tests and months of suffering.

Dr. Pikula's Advice: Sometimes you have to keep asking and pursuing answers until a situation makes sense.

Browse for related stories in the index at the very bottom of this page, or read a thyroid story.

Thanks to Donna Pikula, DDS, for the source, “After the Diagnosis: How to Look Out for Yourself or a Loved One.”

Take your cues from him: Patient’s role in medical decision-making

Granny Tiger (not her real name, I assume) wrote perceptively about the role that patients want in medical decision-making. Her comment responds to Dr. R.W. Donnell’s thought-provoking blog post about the ways doctors can think; both appear below.

Dr. R.W. Donnell:
We should allow patients to be involved to the extent they wish. But I would caution that unless we apply rigorous principles of evidence-based medicine to the discussion with the patient, the decision making process becomes flawed. So if patients’ decisions need to be evidence-based just as doctors’ decisions do how do we bring that about? Is there enough time in our busy practices to do it?

Consider these case examples. You are counseling your patient about upcoming knee replacement. You plan to give enoxeparin for DVT prophylaxis. How do you inform the patient? Sure, you know that it’s the right thing to do and all the experts recommend it, but the patient deserves evidence. So, you do a Pub Med search (or, somewhat more easily, consult a filtered resource such as Up To Date) and cull out the studies you critically appraise as valid and applicable to your patient. In order to advise your patient on the magnitude of benefit of the proposed treatment you look for, or calculate the absolute risk reduction (ARR) for the proposed treatment as well as the absolute risk increase (ARI) for bleeding. In order to translate this into language the patient can understand you then, from the absolute risk reduction for DVT and the absolute risk increase for bleeding, calculate the number needed to treat (NNT) and number needed to harm (NNH) respectively. You then have the discussion with the patient, modifying it as necessary to take into account any unique attributes of your patient which might increase bleeding risk. If the patient is to be discharged early after the surgery you must also provide information concerning the cost of continued enoxeparin at home, taking into account the patient’s financial condition and payer sources. Then you ask the patient and any concerned family members if they have questions, answer them as they arise, and document your discussion in the medical record. Time consuming, eh?

Of course if this is not your first patient to receive enoxeparin for orthopedic prophylaxis maybe you’ve done the drill before, but the discussion still takes a lot of time….

Grannytiger’s reply:

My goodness. If my physician went to all that trouble for me, I'd require resuscitation from the shock. But to tell you the truth, such extreme conscientiousness -- while I applaud it -- is not only impractical in terms of time (yours!) but also overestimates by a long shot what most patients would expect in terms of empowerment.

We certainly want to be informed but there are much less time-consuming ways to help us achieve it. Offer a pamphlet on DVT prophylaxis to the knee replacement patient. You probably already have a pretty standard informed consent "spiel"; give the patient that, and then take your cues from him. If the situation warrants, make a quick diagram of his anatomical problem and what the proposed treatment will do. If he is one of the relatively few patients who really seem to need the specifically tailored information you describe, fine. But most of us will not.

As long as we know you are open to answering questions, even ones we think of after we leave the office, most patients feel that we have a role in the decision-making process.

Advice to doctors with Web-savvy patients: To get a more useful discussion next time with patients, tell them the evidence-based web site/s you respect.

Read one of our informed consent stories, or read more from the source blog post by Dr. R. W. Donnell.