WHAT DOCTORSCANNOTTELL YOU

clarity, confidence, and uncertainty in medicine

PROLOGUE

I have only been fired by a patient once.
I think I know why.
I remember Carl, sitting there in the clinic room. He pressed his lips so firmly together that they blanched. His frustration was palpable. Although we faced each other, he no longer really looked at me. His eyes focused on a point beyond my shoulder.
I was losing him.
“Radiation begins next week,” I said, reluctantly rising to leave the room. “I’ll give you a call a week or so after that to see where you are on this surgical decision.”
“That’s fine,” he answered, flatly.
But it wasn’t fine. It was anything but fine.
I called him two weeks later.
Before I could say anything of substance, he asked quietly, “What do you think about a second opinion?”
“I think it’s a great idea,” I said. “I doubt anyone will have any different options to offer, but another surgeon will see your options differently. A new perspective may help your thinking. I’ll set up an appointment for you with my partner.”
Why didn’t Carl want to see me again?
I was, he told my partner, “the guy who told him he might lose his leg.”
Just so --- I was the guy who told him he might lose his leg.
What I also told him was that he might prefer amputation to the option that might save his leg.
I don’t know if he heard that part.
Carl wasn’t unhappy about anything I knew or didn’t know. What I had or hadn’t done didn’t bother him. What I told him troubled him.
Should I not have told him?

Words wield incredible power. Even a single word can undo an entire conversation, especially if the word impacts one’s health or that of a loved one.
Josh had a sore knee. He figured that it was his high school football injury flaring up two decades later. Still, he decided to have it checked, so he made an appointment with a sports medicine specialist. After describing his symptoms to the clinic nurse by telephone, she arranged an MRI to precede his visit with the surgeon.
After the MRI, Josh walked upstairs from the scanner to the waiting room of the sports clinic. He checked in, found a magazine from the rack. But before he could take a seat, the receptionist left her desk to speak to him.
“The doctor has already looked at the MRI,” she began. “He wants to refer you to a Dr. Jones. Here’s his contact information.”
She handed Josh a post-it note on which she had neatly printed my name, my phone number and “Huntsman Cancer Institute.”
Josh walked quietly out to his truck, the note clenched in his fist. He tried to call his dad, but got only voice mail. He sat there, stunned.
A few minutes passed. His cell phone rang.
“Hello?” he answered hesitantly.
“Hello,” said a cheerful voice on the other end. “This is Michael at the Huntsman Cancer Institute. I understand that we need to set up an appointment for you to see Dr. Jones.”
“Sure.”
Not everyone who comes to see me as a patient at the Huntsman Cancer Institute has cancer. Although Josh didn’t know it, the sports medicine specialist hadn’t actually thought that cancer was his problem.
It didn’t matter. The word had been spoken.

Spoken words, unspoken words --- they’re equally powerful. When physicians leave blanks, patients fill them in. Some hear promises. Others hear threats.
It had been a full day of surgery for me. By the time I made my way over to the chemotherapy unit, it was nearly midnight. The late hour didn’t matter. I had to try at least. Ewan’s mother and I hadn’t talked face-to-face since I called her the night before to relay her son’s confirmed diagnosis of bone cancer.
While I had been in the OR with other patients, Ewan and his mother had met the chemotherapy team for admission to the hospital and begun the first dosing cycle. I doubted either would be awake after such a day. Ewan’s mother had confessed by telephone the night before that she had slept little during the week since the biopsy. If neither were awake, I’d simply let the nurse know to tell them I had stopped by.
But Ewan’s mother was awake. I found her sitting on the chair next to his bed, reading a folder of papers by flashlight. She quickly rose and ushered me back out to the hallway.
“He only fell asleep an hour ago,” she explained in a whisper. “Let’s talk out here.”
“Out here will be fine. I don’t need to check anything on Ewan anyway. I just came by to see how everything’s going so far.”
“Is this your cheerleader mode that you told me you would shift to now that Ewan is starting chemo?”
“That’s right,” I acknowledged. “Don’t worry, though; I promise not to wear a skirt.”
She smiled.
“I doubt I’d look very cute in one anyway. But yes, the chemo docs run this show for the next couple of months. I just cheer from the sidelines until the time comes for the big surgery.”
“And that’s at week 11, right?”
“Usually,” I confirmed, shrugging my shoulders slightly.
“What do you mean by ‘usually’?” she asked, concern unmasked in her voice. Without waiting for an answer, she plowed forward. “This protocol says that Ewan will be here 3 days this week, then off two and half weeks, then here 5 days the next week, and 5 days the week after that, and then. . . . Oh wait, maybe I have that wrong,” she interrupted herself, almost frantically flipping through her folder of papers.
I tried to reassure her.
“You have the protocol correct. Have you memorized it?”
“I just don’t want to mess anything up. I don’t want to miss anything.” She seemed to be trying to brace herself. “Dr. Jones, you told Ewan and me that we win more often than we lose in cases like his, but not as often as you’d like. Today, I got the chemo protocol. It looks tough, but we can do it. I’ll have to quit my job, but we can move in with my parents. I can do this. I will do anything for my Ewan. He’s all I’ve got. I can follow this protocol to keep him safe.”
I didn’t tell her that her thinking was wrong --- I couldn’t crush her belief that her obedience to this protocol would protect her precious boy. So my silence probably reinforced a promise she had heard in the unspoken words of the oncologist earlier in the day. Yes, I felt this regimen was the best available to manage Ewan’s cancer. Yes, more children finishing this treatment course will survive than if not treated. Yes, she and Ewan should stick to the protocol as closely as possible. But obedience alone wouldn’t save him.
I didn’t choose to clarify that critical point.
I didn’t tell her.

Few communications are more fraught than those between physicians and patients, no matter on which side of the white coat you find yourself.
But I am not your physician here.
So perhaps, here, I can tell you what your doctor can’t tell you.
And why he can’t.
I will tell you about a physician who was literally run out of town for daring to suggest that medicine ought to keep track of results.
I will introduce you to a surgeon who dared not to operate.
I will explain how the muddle of disease and diagnosis and fuzzy biology sometimes creates a disconnect between doing right and getting it right.
I will tell you the story of a noble woman who took her chances and lost and another story of a frightened man who could not take a chance, but still lost.
You will meet a mother whose heart was breaking because her daughter had not yet died.
These are not, I want to emphasize, extraordinary cases.
These are not stories about beating the odds.
This is a book about ordinary cases and how extraordinarily difficult it is to be certain about the odds in the first place.
Here you will witness the rules of engagement and the space in which medical decisions are made.
What you won’t see here: the brand of “differential diagnostics” as practiced by Hugh Laurie on the House TV series. That’s because House is not, as they say, based on a true story. On the contrary, it’s total fiction. A patient may hear a diagnosis from a single doctor, but rarely has that doctor arrived at the diagnosis alone. Diagnosis is a team sport. And like other team sports, it requires at least a modest ability to play well with others.
The lone genius with the repellent personality and a knack for plucking the right answer from the heavens --- that doctor doesn’t exist. Here, we are dealing with people. On both sides of the space where decisions are made.
So the point of these stories isn’t to encourage you to marvel at the skill of the people in the white coats. It’s to help you learn to talk to your physician, how to understand what she or he says. And then it’s to help you to ask your physician to invite you more fully into that privileged space, not as subject alone, but as the interested party.

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