Without naming drugs, because there are several that fall into this category, has anyone else noticed that many of the new cancer drugs show an infinitesimal improvement in progression-free survival or overall survival?
I mean, we are talking weeks here. And the cost per day of extended life is thousands to tens of thousands of dollars. Someone has to pay for all this. I do not hear my colleagues discussing the hard data with patients, so how are they making the decision to take a personal and financial risk on these agents?
Maybe I am too practical, or am not being honest with myself about what I would choose in a similar situation. I think I know that I do not want to spend a ridiculous amount of my legacy for useless treatment, and I am not about to extend a life that does not allow me to do much more than visit the doctor’s office weekly and sit in a room full of other equally despondent patients waiting for a few minutes of face time with a doctor.
A recent study showed that 77% of patients who had been told their disease was terminal and that they would be on palliative chemotherapy, walked out and told the interviewer they were being treated for cure. So would they even comprehend the data on what is considered “statistically significant,” though perhaps practically irrelevant progression-free survival?
We have started a “treatment planning” visit for palliative chemotherapy patients to sit down with a nurse practitioner and go over the stark details of their illness and expected treatment course, including when hospice care will be appropriate. After 30 years of oncology, I am a firm believer that patients and families deal with concrete information far more rationally than soft, innuendo. If you leave it to their imagination they will always construct a more favorable scenario. Or, if you offer a new drug and no other option and leave out the details of drug efficacy, what choice do they really have?
On the other hand, I have treated patients I thought for sure were going to die before the drugs could work and they had a miraculous—truly!—response that lasted for months to years. But that is a tiny number of patients and I have probably caused far more suffering with desperate measures than healing. But boy, the woman with metastatic breast cancer who stopped taking Herceptin for a year and showed up with liver failure, ascites, and a coagulopathy who I thought would surely die in my office when she refused to go to the hospital was back the next week walking on her own after one dose of Taxol/bevacizumab/trastuzumab. And that was 4 years ago!
So when do we know who should get that Hail Mary drug and who needs to spend more quality time with their family? Performance status? Will to live? True grit? I do not know the real answer to that question, but I think a part of it is the art of medicine. In the meantime, I will try to always be compassionate but completely honest with my patients so they can decide what is meaningful for them.