Desperation oncology: when the doctor becomes the patient

A drowning man will reach for the blade of a sword

Years ago, I read an essay by a physician about his wife who died of cancer. The doctor had been a great champion of evidence-based medicine, of compassion at the end of life. He advocated against unproven, hail-mary measures, and supported palliative care. He understood how psychologically tempting heroics were, but, how, in aggregate, they do more harm than good. Then his wife became sick with cancer, and he found himself reaching, desperately, for those very same, unproven measures. The piece was agonizingly beautiful— showing the gulf that exists in us between reason and hope.

Recently on social media, a well-respected, and well loved oncologist reported that he has terminal cancer. The standard of care for his disease is poor, and has not witnessed major improvements in decades. Because of his overall health, and relatively young age, it's easy to think he'll do better than average, but, the disease is merciless, and the outcome in all reported cases has always been the same.

When I saw the news of the oncologist, my heart broke. Many of us wrote letters to this person, wishing him well, and offering to help in any way possible.

As time went on, the oncologist started to live stream his-experience. He wrote about what he was going through, and posted pictures. It was empowering. Humanizing. For people who don't spend time in the clinic, it provided an opportunity to see what life was like for a patient. Even for those of us who often work in the hospital, we rarely see it from the other side.

Then the heroics began.

His doctor, also a well-respected and caring oncologist, treated him with one unproven remedy after another. Some appeared to be a part of a clinical trial, but others did not. The combinations surprised me. Several of these medicines were specifically known not to work in this disease— others had never been tested. All the drugs were new and costly. All of them had toxicities.

From time to time, the oncologist reported that the treatments had to be stopped. At times, I worried it was toxicity that led to the pause.

The oncologist had good weeks and bad weeks, good news and setbacks. And as with any individual patient, it is impossible to know how much of this was due to the unproven treatment, or occurred in spite of it.

A colleague from Europe wanted to know what I thought about all of this. On the one hand, everyone wanted what's best for him. Live streaming his treatment was empowering and meaningful.

On the other hand, the treatments he was receiving were unsupported. They would never be covered in Europe, and even most commercial US payers, who are generally far more generous, would not cover them. Patients following along might be taking home the wrong lesson, my European friend worried. They might think that with enough connections, and enough hail Mary passes, a doctor can get better care than the average person, but nothing is further from the truth.

He asked me what I thought.

First, my heart breaks for the oncologist. Like everyone with cancer, he didn’t deserve this. He did nothing to cause it, and it is just bad luck.

Second, I admire him for sharing his story. Just a generation ago, cancer was too foten a taboo diagnosis, and kept secret. I'm grateful that we're past that, and patients can share their stories.

Third, I think the idea that unproven drugs are a good thing, worthy of pursuit, and constitute the best care possible, is an idea that is deeply poisonous. I think the oncologist is sending the public the wrong message.

We run clinical trials because most ideas in cancer medicine don’t work. Trials protect pateints from making wild gambles out of desperation. As the old saying goes, “a drowning man will reach for the blade of a sword.”

I worry that precisely because the oncologist is well connected— his doctors have allowed him to try medications they never would give their other patients. He is a victim of VIP medicine.

Giving unproven drugs on a lark— without good data— is the curse of American medicine. We spend so much taxpayer money on medications that benefit no one, and merely consolidate wealth in the hands of a few shareholders.

There are children in this country who go to bed hungry. They are kids who are the victim of poverty, profound deprivation, poor nutrition, poor schools, and worse. Society seems holy incapable of mobilizing resources wisely to benefit these children. We merely close their schools when we get scared of the latest respiratory virus, and send our own kids to private school.

And what do we do with the money instead?

We spend hundreds of billions of dollars on entirely unproven pharmacologic agents, perpetual boosters, and the medical industrial complex. We shift massive amounts of capital from the hands of many taxpayers into the coffers of a few companies. We do this with the false claim that we are helping improve outcomes, but in many cases we have no evidence that this is true. The unproven drug, the unproven yearly covid shot, is not a medical product. It's a financial product. It moves huge amounts of capital, whether or not anyone is better off as a result is entirely uncertain.

The oncologist’s story just gives the public the wrong idea. That if you have the right doctor, if you had an unproven drug, you would have a good outcome. I'm sure this oncologist will do better than average, he might already have passed that mark, but I have zero confidence that's due to any of the things he's doing.

When the oncologist becomes the patient, sometimes he is the drowning man, reaching for the blade of the sword.