Despite the best evidence, oncologists cannot dictate treatment

During Multidisciplinary Gynecologic Oncology Tumor Board at Massachusetts General Hospital, a case was presented of an older woman with stage IV ovarian cancer who was deemed inoperable. Following review, we recommended a course of chemotherapy.

I asked our fellow what treatment she would administer, and this sparked a discussion on how patients and providers create a treatment plan. We discussed options, evidence, and about how best to maximize her quality of life while treating her cancer. We also spent some time discussing what constituted “acceptable” treatment-related toxicity. I was struck by that notion of “acceptable toxicity” and it made me wonder about who decides that—who determines what is acceptable?

I recall taking care of a patient in her 50s with recurrent ovarian cancer. She was relatively asymptomatic despite omental carcinomatosis, which had gotten worse following three prior lines of chemotherapy. On review of her treatment history, it turned out she had never received pegylated liposomal doxorubicin (PLD), which is among the most active agents in recurrent ovarian cancer. I recommended we proceed with PLD and reviewed how it would be administered. Before I could go much further, she stopped me.

“I don’t want it,” she declared.

“What?” I asked, slightly puzzled.

“You heard me—I don’t want PLD.”

I was incredulous—how could she refuse the drug that is most likely to work against her cancer? “If I may, can I ask why?”

“It’s because of the skin toxicity. I know about PLD. I’d have to avoid tight clothes, wear sensible shoes, like clogs and Birkenstocks. Frankly, I hate clogs, and I’ll be damned if this cancer forces me to wear them.”

I stared at her even more perplexed. “I am not sure I follow..”

“Dr. Dizon, I have few passions left that cancer has not taken from me—and one of them is my love of shoes—I love my high heels. No, let me rephrase. My life will not be worth living to me if I cannot wear them. No drug is worth giving them up.”

“So, what you’re saying is,” I stated, “you’re going to refuse the drug that could help the most because you refuse to give up your stilettos.”

Looking me straight in the eyes, she said, “That’s right.”

I recall immediately being taken aback, thinking how foolish she was. After all, I was offering a drug that could help stop the cancer in its tracks; it could prolong her life. And yet, instead of taking my advice, she had rejected it; wouldn’t even consider it. “Shoes before cancer” seemed to be her motto.

Allowing myself time to step back, however, made me realize it was not me who was in a position to determine what toxicity is “acceptable.” I am not the one who must live with treatment and its impact on daily life. Indeed, only one person has to look at herself every day, fight cancer, and fight to remain true to who she is despite it. It was my patient in front of me, and she did not want PLD. In essence, she did not want to take the risk that her cancer would mean giving up yet one more passion.

“Okay,” I said. “There are still options. Let’s go through them.” After further discussion, we agreed on the best way to go forward.

Perhaps one of the hardest lessons for an oncologist is to acknowledge that despite the best evidence, we cannot dictate treatments. What we can do is provide information, give advice, guide the formation of a treatment plan, and then monitor and care for those we are aiming to help.

Cancer takes away much from the person living with it. It forces our patients to change, to accommodate it and its therapies. Because of this, I have a deep respect for maintaining the ability of our patients to choose. In our mission to provide comfort and hope, we must accept the autonomy of patients and the informed choices our patients make, without judgment.

After all, “you never truly know someone, until you’ve walked a mile in her shoes.”

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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