The Flip Side of Unrealistic Optimism
Last week, Pauline Chen wrote on medical ethics and clinical trials. She reflects on her training at a cancer research hospital, where some cancer patients go with unrealistic optimism.
Like Dr. Chen, I spent part of my training at a famous cancer center where I worked as a resident and fellow on rotations. And yes, some patients were unreasonably optimistic and some – perhaps even most, it seemed – didn’t fully “get” the purpose of their trial, which in Phase I studies were not designed to help them. This is a real dilemma for treating oncologists.
The problem of patients’ false expectations might arise from a Lake Wobegon effect, suggests Dr. Daniel Sulmasy in the Times piece: “If you have more than 50 percent of patients saying their chances are better than average of avoiding some harm or obtaining some benefit, they are being unrealistically optimistic because you can’t say that most people are above average.”
I share Chen’s concern about ethics in clinical trials. Besides that patients don’t always (read: often) don’t understand the study, and that they may be coerced – usually subtly – into signing on, and that they may, ultimately, be simply used as objects in a researcher’s career-advancing investigation, clinical research sometimes does help humans, and progress occasionally happens in medicine. Take the woman with metastatic melanoma she recalls in the story: There might be effective drugs for her condition now, or next year.
The flip side of the Wobegon effect in medical ethics of clinical trials is that some patients (and their doctors) might have undue pessimism. These are the “50 percent” of patients who won’t show up at research centers, which could, potentially, help them to get well or at least feel better.
I think one of the biggest challenges for patients with serious conditions and their doctors is discerning what’s worth trying, and what’s snake oil in an academic outfit. Hard to know before the trial’s done –
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Hi. After my wife was diagnosed with Stage 4 NSCLC, I remember going with her for a surgical opinion about a lung resection following her being re-staged as Stage 2. The thoracic surgeon essentially said she was not salvageable..and we were being unrealistic. We subsequently went to MD Anderson where her Radiation Oncologist said he believed he could cure her. Told after 7 years she is alive, cancer free and doing well.
Whose to know where the line is between unrealistic optimism and hope? As a cancer survivor yourself I know you know what I am talking about. I’ll take hope over despair any day of the week.