You Only Die Once

Cancer is a battle for some people. But for others it's a negotiation. And palliative care is a large part of that. I'm happy to see more health care professional training on how to make a patient comfortable when there's not a lot to be done clinically. 

I am hearing more about doctors having those tough conversations with patients about their options, and their risks. The way we talk about this matters a great deal. Patients who think they have to fight as hard as possible, for as long as possible, may not have time to do what they need to at the end of their life (because they aren't aware that the end is near.) 

When described as "feeling well for as long as possible" or "free of pain" or "time to say goodbye," palliative care can allow a person to deal with what is coming. Death from cancer or a terminal illness should not be a surprise. The need of clinicians, historically, to avoid admitting defeat, should be secondary to the primary need of patients to know what is happening to them, and what is coming next. 

As scary as it is, we need to talk about death. And a dignified, peaceful death is something to strive for -- let's help make that the standard. 

The Emperor of All Maladies

The book, The Emperor of All Maladies by Siddhartha Mukherjee, was a rarity in it's history, breadth and insight into cancer. In fact, it's cleverly subheaded "A Biography" as if cancer is a single unit with an identity. I enthusiastically recommended it to people, who gave me odd looks I guess because why would they want to read a big book about cancer?

I'm surprised by how the film by Ken Burns and Barak Goodman changes the experience of consuming the information in a different way. Seeing the cancer patients is so much different than reading about them. The interviews with patients and doctors bring home so much more sharply how it feels to be fighting this beast. Like in episode two, a surgical oncologist undergoing surgery for breast cancer with her fellowship mentor. 

Another very effective use of film as a medium is the news clips. How we fight cancer has been controversial, and I think that is often overlooked. We might all want to cure it, but the road to get there has been full of misguided attempts and battles of ego. At one point, everyone thought things like high dose chemotherapy, radical mastectomies and deeper margins were the way to go -- basically overwhelming the systems to the highest degree possible without killing the patient. 

What I think is important about this history is that we need to look back and see that while our  knowledge was good, it was incomplete. Or it was based on bad assumptions. So, I see it as a call to look up, think differently and collaborate -- that's what's needed for us to move in one direction. 

The "Practice" of Medicine

One of the most startling things about working in health care should not be that shocking. But for me, finding out that sometimes doctors don't know what to do was a surprise. I think that doctors deserve a great deal of respect. But, they don't know everything. (Unfortunately, no one does!)

I'm watching the Ken Burns series "The Emperor of All Maladies" (based on the amazing book by Siddhartha Mukherjee) and it's easy to look back with hubris and disdain for the early cancer doctors. What were they thinking with extreme surgery to remove breast cancer that took out half of the woman's torso? How could they use radiation at such high doses that people's noses and fingers were burned or fell off? How could they take chemicals of unknown usefulness and give them to patients? 

Well. While we know so much more about cancer cells now, and the different types, and some of the genetics behind it...we still live in an age of experimentation for some cancers. It is the person plus the disease plus the treatment and it's unknown how it will turn out. The uncertainty is a bit terrifying. 

When I worked with patients with autoimmune disorders, I was always surprised that they didn't know the cause and sometimes didn't know if they had just one disorder. I recently interviewed an allergist who said that he's part detective because there are so many factors in an allergic response. In short, there are still many questions. 

Doctors don't know everything, but I'm reassured that they are on our side in the fight against diseases like cancer. Progress is being made, but we shouldn't forget that there remain many unknowns.  In my opinion, peer-reviewed research, clear and accurate communication and asking lots of hard questions may help us go even further. 

PS Want to read some insightful poetry about being a cancer doctor? HERE