Ever Wonder What Metastatic Pancreatic Cancer Means?F. Amos Bailey, MD Jul 28, 2020
Just Watch this Video!
A recent study in JAMA Oncology demonstrates once again “If you want people to understand their cancer is serious and that what you are giving them is “palliative chemotherapy” you are going to have to talk with them.
I get it. I did a Medical Oncology Fellowship in the 1980’s and worked as a Medical Oncologist for another 12 years before transitioning into Palliative Care full-time. You have a busy clinic and a few of your patients are getting some sort of adjuvant therapy that “might” increase the chance their cancer won’t come back after surgery. Occasionally fate throws you a bone and you can cure someone who has testicular cancer or lymphoma. Most of your patients, they have metastatic cancer. Cancer, that from the day you meet them, you know that you can’t cure. If all works out as well as possible you might stop the cancer for a few months, maybe a year, slow it down, keep it under control. Every scan you order is a crap shoot. Will the cancer be better or have gotten bigger?
This is an important job. I know from my personal experiences as both a doctor and patient, this not knowing what will happen and trying to make the most of difficult situation is important and it requires a conversation. Still we look for ways to get around talking about the elephant in the room.
Enzinger et al. (2020) sampled 186 people living with advanced cancer participated in the study. Most people, 4 in 5, said they wanted a lot of information about their cancer, the prognosis, the likelihood of a cure (not at all likely) and any adverse effect. Half of the sampled population got “usual care” and the other half got a booklet and videos that they could watch, which the authors report contained “frank prognostic information”.
Ultimately, similarly to the original SEER’s study in a similar population, about half the people in both the intervention and “usual” care group thought there was some reasonable chance that the chemotherapy could cure them. When you read the article, you can see that the authors were taken aback. Not even a pamphlet and a video were going to get this difficult news across. Someone was going to have to have “the talk.”
Having worked as both an oncologist and a palliative care provider I am not surprised. What is missing? Goals of Care. Life has dealt you this difficult diagnosis. What you really need is someone to facilitate a conversation in which you can consider what is important, meaningful and adds value to your life and then match that up with what are somewhat limited and less than ideal options. This conversation will be difficult, it will take time, and it will require more than one visit.
Two stories I’d like to share. Once I had an older man, in his 80’s with leukemia. He was a physician by training. Somehow, we got him through induction chemotherapy and into remission. Sadly, his wife, who I’d never met, died while he was in the hospital. He told me he wanted to take his wife’s ashes back to England, where they were from, to spread them in a Rose Garden. He wanted to go back by ship, the way they had come to the US nearly 50 years earlier. As soon as he was in remission, I told him now was the time to go. However, he wanted to stay and take the consolidation treatment so he could be cured.
I provided “frank prognostic information”. He persisted in wanting more treatment and unfortunately a combination of toxicity and reoccurrence led to his death. No trip back.
Around the same time an older man told me in the chemotherapy room about the birth of grandchild, there were pictures. He planned to go visit in a few months when his chemotherapy for stage IV lung cancer was done. As we talked, I realized this was so very important, and we decided to take a month break from treatment so he could make the trip. Now.
Sometimes it just takes a conversation.
Enzinger, A. C., Uno, H., McCleary, N., Frank, E., Sanoff, H., Van Loon, K., ... & Bagley, J. Effectiveness of a Multimedia Educational Intervention to Improve Understanding of the Risks and Benefits of Palliative Chemotherapy in Patients With Advanced Cancer: A Randomized Clinical Trial. JAMA oncology.