Regret is something I rarely felt as a young man, but now that I’m older, I experience it more often than I’d like as an oncologist.
I remember the first patient I cared for who died directly as a consequence of cancer treatment. He was a patient with prostate cancer that had developed into hormone-resistant disease with painful bone metastases. I treated him with docetaxel chemotherapy, and the cancer responded initially. However, after his fourth treatment, he began experiencing some shortness of breath. His pulse oximetry readings were higher than 90% and his chest x-ray was clear, so we administered his fifth treatment. About a week later, he was admitted to the hospital with shortness of breath and pulmonary infiltrates. Despite antibiotics and corticosteroids, his condition worsened over the course of 10 days. He was transferred to the intensive care unit and intubated. He never recovered, and the decision to withdraw life support was made five days later. An autopsy confirmed drug-induced pneumonitis.
Back during my fellowship training, one of my attendings once callously remarked to me that you are not an oncologist until you’ve killed someone. I don’t believe that, but I also don’t deny where he was coming from—that we use deadly treatments to treat deadly disease. Fast forward a couple of decades, and we are in a different era of precision medicine and immunotherapies. We have witnessed remarkable responses that give us great hope for patients with late-stage cancers. But if we are honest, we have also seen the ugly side of these targeted treatments—the lethal autoimmune toxicities they can cause.
About 10 years ago, in the early years of immunotherapy, we had a clinical trial of a novel immunotherapy for men with advanced prostate cancer. I had a patient who eagerly agreed to participate. Within two weeks of his first treatment, he was admitted with shortness of breath and a creatine kinase level in the thousands. Over the next two weeks, profound myocarditis and myositis developed that proved fatal. We later tested his pretreatment blood samples for underlying causes and found that he had rare antibodies for polymyositis, but at the time he had no clinical symptoms.
In cancer care, we are always dealing with a knowledge deficit. Even as we make progress in the understanding, monitoring, and management of patients with advanced cancer, each new treatment creates more questions than answers. It is important for us to recognize the factors we do not know when we treat patients. We cannot always hold off rare complications by predicting them early. Our patients are not spared a certain fate just because it is rare. But it is not just physicians who experience regret—our patients do as well.
I was reminded about patient regret by a post, “On Living With Regret,” on Kate Bowler’s Everything Happens Substack. Kate is an associate professor of American religious history at Duke and a cancer survivor. In her post, she recounted feeling the pressure to make life-altering decisions with very little information. She had to choose among treatments that affected not only her outcome then but also her options in the future. And she had to decide all this in the moment because waiting carried its own risks.
In shared decision making, we engage patients in the decision process, giving them not only agency regarding their cancer but also ownership of the outcomes, whatever they may be. Such empowerment may create regret in patients as they deal with the consequences of each decision. In her post, Kate shared some advice that a friend gave her about looking back on her decisions:
Today, you have to decide that you did the best you could with what you knew.
Physicians are not absolved of responsibility in this shared process either; our job is to educate patients about their choices and guide them toward a decision that offers acceptable risk for greatest benefit. But it is important to recognize that during the patient’s journey, both patient and physician are at risk for regret. Rather than judging ourselves later with hindsight, we need to recognize that we do the best we can with what we know at that time. Only then can we help our patients find peace with their journey.
Sincerely,
Daniel J. George, MD