One of the greatest joys of practicing medicine is for me to understand where my patients are coming from, so I can best help them through their medical journey. I was reminded of this fact recently, when talking with a patient who had just come back to my primary care clinic after visiting the liver clinic to discuss his chronic Hepatitis C infection. His liver function was still quite good, but his blood tests and liver biopsy showed ongoing liver damage. If this continued, there was a good chance my patient would soon find himself with a failing liver.
At the liver clinic, he had met with a concerned and caring physician who talked to him about how serious his liver disease was, and who explained the pros and cons of treatment. When the patient returned to my office, it was clear that he had been well educated. He knew that treatment had about a 50% chance of curing him and that, for the majority of patients, the treatment was long and arduous, making them feel like they had an unending case of the flu. With this information in mind, and with vivid recollections of past bouts with the flu, my patient decided to forgo treatment.
His visit with the liver doctor was, by all measures, a paradigm of autonomous decision making. My patient was intelligent, informed and clear about his preferences, and yet I found myself unable to accept his decision at face value. I gently pushed back: “I’ve taken care of a number of patients this year who went through this same treatment who discovered that it wasn’t nearly as bad as they thought it would be,” I told him.
And that’s when the two of us came up with a third alternative: a trial of treatment. My patient was understandably overwhelmed at the thought of months of flu-like symptoms. He didn’t even know how severe these symptoms would feel, so it was difficult for him to commit himself to extended misery. But his decision didn’t have to be all or nothing. What if he started treatment with the option of quitting if he found it intolerable? I laid the idea out for him: “You might find out that it is not so bad after all. But if it makes you miserable, and you don’t want to go on, I will support you.”
He returned to the liver clinic and told the specialist he was ready to start treatment.
Emboldened by my experience with this man and his hepatitis treatment, I have increasingly looked for third routes for patients who I fear might be making bad decisions because they haven’t seen all the possibilities. I call it my “all or something” strategy.
So you won’t be surprised at what I proposed to a patient I met one day who was reluctant to receive monthly shots to prevent recurrence of his prostate cancer. He was afraid that the monthly shots would be uncomfortable. It was our first visit together, and I was talking to him about his general medical history. He had already received treatment for prostate cancer, and his urologist had recommended that he receive a monthly injection of a medication that would reduce the chance of recurrence. But he was tremendously afraid of needles. Hated them in fact. And the thought of a monthly injection was simply too much for him to contemplate.
I talked to him at length about this decision, skeptical that fear of needles could dissuade him from a potentially life-changing treatment. Was he afraid of the side effects of the medications? No, he wasn’t. The cost of the medication? Not at all. Did he trust his urologist? Had they had a bad interaction? No. In fact, he was delighted that the urologist happened to be African American, like he was. But that didn’t mean he was going to put up with a monthly injection.
At this point I spun the discussion over to my “third way” approach. I suggested that he try a monthly injection once, to see what it felt like. Maybe it wouldn’t be such a big deal. Then he could try it a second time, and continue the treatments only as long as he decided that they were worthwhile.
He rejected my idea. I honestly could not understand how any human being could be so afraid of a little needle that he would turn down a treatment that might forestall the recurrence of a life-threatening cancer.
As I sat there, confused about this man’s decision, he looked at me and said: “You’re the first doctor who really understands me.”
I neither comprehended this man’s decision, nor understood what in the history of his life would have led him to make this decision. But I did understand one thing that day: that the proper practice of medicine is about striving for understanding even when we cannot obtain it.
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