Close your eyes and read this passage. Ha Ha! Seriously, though, read this passage:
You're driving down a two-lane road in an unfamiliar area at night. The road ends in a ‘T’ with another two-lane road. You look left, you look right. The moon is low, the stars are few; the road is dark in all directions. Which way do you turn?
You’ve just been diagnosed with an aggressive type of testicular cancer. You have to decide: Chemotherapy, Surgery, Radiation, or Sit and Wait. Which way do you turn?
This is easily the most common question new patients and their loved ones ask the online support groups: “I just found out I have testicular cancer...what kind of treatment should I have?”
We make hundreds, maybe thousands, of decisions every day. Yesterday I had to decide what time to wake up, whether to shave, what to wear, what route to take to the doctor’s office, what kind of coffee to drink, where and what time to play golf, what to wear golfing, where to park, what to drink, which club to use, etc…
The countless daily decisions are normally pretty easy; a few well understood choices, predictable outcomes, unimportant consequences.
Plato believed an individual's responsibility to society was a cornerstone of decision-making; thus, I probably should not wear a striped shirt with plaid golf shorts.
Adam Smith believed we make decisions based on our own self-interest and the social or macroeconomic results of those decisions are rarely considered.
John Maynard Keynes believed our decisions are the result of our ‘animal spirits’. This is my animal spirits shirt (courtesy of NPR’s Planet Money):
Albert Carter and Abe Bookman believed decision-making was the purview of cryptic messages in murky blue water: Magic 8 Ball, will people still like me if I wear socks with sandals?
Back to the turn...do you go left or right?
Without knowing what awaits you in either direction, even a simple decision can become difficult. So what happens when the decision isn't so simple? What happens when a once trusted body part turns against you, attacks from the inside, threatens to grow and grow, invade and destroy your brain and heart and lungs? Time is a factor-what do you do? How do you possibly make that decision?
Have you ever had this conversation?
“What do you want to do for lunch?”
“I don’t care, whatever you want.”
“Well, I’m not picky so it’s up to you.”
“I’m up for anything.”
“Fine. Let’s get burgers.”
“I don’t want burgers.”
“Then what do you want?”
“Anything you want is fine. Except burgers.”
“Not Thai. Anything you want is fine. Except burgers or Thai.”
Eventually you give up and eat a stale fortune cookie from the back of your desk because you spent the entire lunch hour arguing about where to eat. And the little scroll inside reads, “Be happy today.” How is that even a fortune?!?!?!
If we vacillate so much for something as inconsequential as lunch, how are we expected to make an intelligent decision about cancer treatment? Almost none of us is an oncologist or urologist or medical researcher. When I was diagnosed with Stage II testicular cancer in December 2012 I wasn't a doctor. I was a loadmaster in the Air Force. What’s a loadmaster, you ask? A uniform full of awesome.
The Air Force has some big cargo planes. Without question, the best and most versatile and sexiest of those cargo planes is the C-17. You can’t argue with that; it’s science. The loadmaster is the member of the flight crew who decides where and how cargo gets loaded onto the plane, calculates the weight and balance of the airplane,and airdrops troops and cargo onto battlefields. Loadmasters bring joy and class and spendable per diem to Irish pubs and gin joints the world over. Loadmasters do not treat cancer.
Instead, we (smartly) turn to the men and women with education and experience. Years and years of education and experience, in fact, treating hundreds of patients. But strangely, ultimately, the decision is the patient's to make. And therein lies the absurdity. One person has years of schooling and experience, an intimate understanding of biology and disease and treatment options, and access to technology and tests and peer expertise. The other person has Google.
You may have heard of this guy named Hippocrates. Something like 2,400 years ago he came up with a set of ethical rules for doctors. Things like “Treat the sick” and “Abstain from harm” and “Don’t go chasing waterfalls.” He also advised doctors to “conceal most things from the patient while...attending to him. Give necessary orders with cheerfulness and sincerity, turning his attention away from what is being done to him...revealing nothing of the patient's future or present condition.”
I completely understand that. Thanks to the magic of WebMD and Facebook, everyone with a smartphone is suddenly a medical professional. Most people will search the depths of the World Wide Web until they find the answer that works best for them or they crowdsource treatment opinions from their almost-certainly-not-a-doctor Facebook friends. Too many people with Internet access want to validate their pre existing opinions or find an explanation that best fits their usually fantastical world view. Except the Galaxy Note users. They just want to watch the world burn.
So then, it stands to reason and logic that we should defer to the experts. They say “chemo,” we say “which arm, doc?” Except that’s not what happens.
Hippocrates would have hated Informed Consent, the idea that a doctor educates the patient and provides options; the patient makes the decision. But that makes sense, too, because the doctor doesn’t know my personal situation. The doctor doesn’t know my family situation or economic situation or professional situation. The doctor knows which treatments have what percentage of success, and can make great medical decisions in a vacuum. But life doesn’t exist in a vacuum, can’t exist in a vacuum. Except the water bear; those wacky bastards can survive anything.
And so it was I found myself facing a decision at the end of 2012: Chemotherapy or Surgery? What is a loadmaster to do? Turn left or turn right?
The answer to that, and much more in Part 2.