My friend, we’ll call her Anna, recently had surgery on her pancreas, and she has generously given me permission to share her story. As soon as I heard she was going, I sat up straighter and paid attention. The pancreas is a sensitive organ, and not a common target for surgery, unlike the appendix or gallbladder. “Eat when you can, sleep when you can, and don’t mess with the pancreas,” they told us in med school.
Doctors discovered a growth on Anna’s pancreas in 2014, when abdominal imaging was done for something else. It was an ‘incidentaloma,’ as we commonly call such findings. She had no symptoms, and further tests showed no abnormalities of pancreas function. Everybody agreed to watch it with periodic CT scans. Fast forward one year, she still felt fine, but the mass was still there and appeared to be growing.
Cancer! What if it’s cancer? This ominous question looms over every unknown growth that we find in clinical practice. Pancreatic cancer is particularly scary, because there is no good screening test, and people usually don’t develop symptoms until the disease is incurable. Anna’s doctors started seriously considering surgery. The pancreas sits in the back of the upper abdomen, behind and outside of the abdominal cavity—not easily accessible. It serves both digestive and endocrine functions, and manipulating it can wreak havoc in multiple systems—hence the ‘don’t mess with it’ admonishment.
What to do? The tumor did not have typical cancerous characteristics on the scan; most likely it was benign. But what if it wasn’t? It was growing, albeit slowly. Would this be the rare chance to catch and cure a cancer, and really save a life? And if it wasn’t cancer, what was it? How long could we safely not know? Which would Anna and her doctors regret more: Operating now, risking complications from the procedure, only to find out it was unnecessary? Or continuing to watch, and realizing when finally forced to take it out, that it had already spread? If only there were accurate and reliable predictive tools—crystal balls and such. In their absence, we are left with incomplete information, and our own (in)tolerance for uncertainty and risk. The key for effective decision making lies in all parties’ self-awareness of the latter, and our ability to communicate it. This can be overwhelming, especially when the situation is complex.
Eventually Anna told her surgeon, “I don’t understand everything you’re telling me, but I trust you and I will do what you recommend.” She said he looked up and sat back abruptly, as if shocked by her declaration of trust and willingness to put the decision in his hands.
How would your doctor respond if you said this to him/her? Why would this surgeon be surprised at my friend’s statement? My patients have told me the same thing. What makes you think you can trust me? I think it’s based mainly on two things: Honesty and commitment.
I tell the truth.
I learned a long time ago that bullshitting my way through a patient encounter is completely pointless. If I don’t know the answer to a question I need to admit it, period, right there in real time. But just because I don’t know, doesn’t mean I can’t help. I know a lot. I can estimate. I can make a well-educated guess. I can articulate my rationale, explain that while I don’t know for sure, this is what I recommend based on the information in front of me, my past experience, and my personal biases (that last piece is critical). If I’m missing data, I can look it up. How often does an unknown pancreatic mass turn out to be cancer, in cases like this? If it’s very seldom, why do I recommend surgery? Maybe because I watched one too long once and I have always regretted it. This kind of experience will always influence my decision making; I’m kidding myself if I think it doesn’t. My patients have a right to know. It’s not weakness; it’s honesty. When you know my biases, you can decide for yourself how my judgment is influenced, and whether you’re at peace with it. When I own both my expertise and my limits, with humility and not shame, you are far more likely to trust me.
I will stand by you, whatever happens.
In order to trust me, you must also feel that I will not abandon you when things go badly. Because if we know each other long enough, something will always go wrong. You will have side effects from drugs. Treatments will not have the desired results. The worst thing I can say to you is, “Well, there’s nothing more I can do for you, goodbye.” There is always something I can do. I can’t cure your disease or bring your loved one back. I can’t make your depression go away. I cannot change your behaviors for you. But I can ask, “How can I help you suffer a little less?” Whether it’s referring you to a specialist or simply sitting with you for a while, my commitment to you, to our relationship, earns me your trust.
And, it’s a two-way street.
Here’s an interesting question: How can I trust you, to trust me? What do I need in order to feel comfortable both driving and navigating on this patient-physician road trip? It’s a huge responsibility, after all. I was honest about how well I know the geography and what I think we can expect on the way. I have made a commitment to be your travel partner, whatever the road and weather conditions. I need to know that you have relinquished the wheel and the GPS in an informed way, and that you will stay in the front of the bus to point out hazards and road signs. I need to know that you will not automatically blame me, or leave me, when we run over a nail and get a flat tire, or hit a deer that suddenly lopes across the road. We each need to take responsibility for our own part in getting to our destination.
Anna’s tumor was benign, and now she’s missing two-thirds of her pancreas. I imagine sometimes she wishes she had asked more questions, or decided to wait a little longer. But I think she does not regret her decision to trust the doctors. Her medical team is still intact and monitoring her appropriately. They may take turns again driving and navigating on her journey.
Trust is the cornerstone of any meaningful relationship. The patient-physician relationship is no exception. It takes time and presence to cultivate. These are big investments, and if we are willing to make them, the returns can literally save us.