Off the page

She was there for her flu shot. She was planning on going on a cruise. But of course we also spoke about her Cushing disease, about the side effects and the treatment. It was a memorable encounter, but I hadn’t realized what an impression Mrs B. had made until I encountered a problem-based learning case in the endocrinology portion of my second-year curriculum. While completing the case, I realized that I was constantly referring to a mental image of Mrs B. and calling our conversation to mind.

At the time of our encounter she had already been taking corticosteroids for several years, and she even pointed out the more obvious side effects to me, such as the central obesity. I asked her whether she was ever upset about the side effects of the drugs. She laughed and answered, “Of course not! If it weren’t for these drugs, I’d be dead!”

I was surprised. Really? She had no complaints about the increased weakness? Or how they made her look several years older than she really was? About the redistribution of her body fat to the abdomen, the upper back, and around the face? The thinning of her skin to the point that it looked like paper? The bruising from almost anything? During our training we learn all the negative features of Cushing syndrome and the side effects of the treatment. Even though I knew that some conditions required chronic exogenous corticosteroids, I had been too involved with the physiology and the development of Cushing syndrome to consider the obvious purpose of using the steroids in the first place: to help the patient. When I learned about the detrimental effects of Cushing syndrome, I was looking at it from the perspective of a mostly healthy medical student. For Mrs B., the alternative to treatment was death.

Mrs B. knew that she was dying, but that didn’t stop her from living life. In addition to her acceptance of the side effects of the corticosteroids, she had also accepted the idea of death. As a medical student with very little experience dealing with death, I was uncomfortable with the topic. But she comfortably directed our conversation and didn’t even flinch when she mentioned the possibility of her own death in the near future. At the time, far from death myself, I didn’t understand that from her perspective, the fact that she was alive at all was already a bonus. She knew that the steroids had saved her, that they had bought her time. She could appreciate life in a way I could only imagine as someone in good health.

How does one arrive at such an outlook? Can it be an epiphany overnight? I wonder what allowed her to be so optimistic about her situation. Was it because Cushing syndrome is a chronic condition and she had had time to get used to it? Was she simply accepting life as it came? Or did she naturally have an optimistic character? Her attitude has inspired me to search for ways that I can help other patients accept their conditions as she does.

I’ve spent so much more time during medical school with textbooks and notes than with real people. I’m grateful to Mrs B. for making me take a step back and remember that the ultimate goal of medicine is not to treat conditions based solely on theory—trying to “fix” whatever is wrong and avoiding certain drugs because of side effects—but to work with patients to choose treatments that improve their experience with life. Drug side effects and the physiology of syndromes are important in medical practice, but a patient’s quality of life should always be the primary concern.

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