by Karen Knops, MD
“Bones” was one of my favorite patients. Close to seventy years old, he’d had a wild youth riding motorcycles. His nickname was minted after one of his many crashes left him with open fractures, commemorated with the letters “B-O-N-E-S” tattooed on the fingers of his right hand. He’d kicked his hard-living ways long ago, was clean and sober, and followed up regularly for hepatitis B and C and the severe arthritis that kept him to a solitary but satisfying life in a trailer in the Sierra foothills.
Me: Anything you want to talk about today?
Bones: I seen the commercial for this new drug, and I’m ready to try it.
Me: Sure, what is it?
Bones: This Viagra. Can you prescribe me that?
I was behind schedule and this question seemed straightforward, but since I wasn’t aware of any sexual activity and he did have hepatitis, I launched into a thorough sexual history and emphasized the need to protect future partners.
Things only became more confusing; he’d had no intercourse for over five years and no sexual activity planned. Finally, I backed up to the place where I should have begun:
Me: What symptoms are you having? What is your goal with this drug?
Bones: I’m just so tired, doc, and I seen on TV it can help.
I sat for a moment with this, envisioning commercials with couples frolicking hand in hand, hiking beachside cliffs, men smiling with vigor. “Just ask your doctor,” they say. The assumption is that the doctor will ask the right questions back.
We backtracked and reviewed his fatigue and his goal of working on motorcycles again. The visit was twice as long as it would have been if I had begun by looking backward at his experience rather than forward at treatments. What if he had visited a physician who was even more hurried and knew even less about him? Likely, he would have been given a quick script and returned days later to the emergency room with iatrogenic hypotension.
It’s easy to barrel down the wrong path in the name of efficiency, in the name of moving forward. But our patients are like hikers, climbing the steep mountain trail of their lives. We clinicians are guides who meet them at a crossroads. While we may understand the terrain that is medicine, it is our patients who know the road they have traveled, what they have gained and lost along the way, and where they want to be in the end.
While any clinician can volley a string of questions, or dole out “what the patient wants” with a customer-service smile, neither facilitates trust or understanding. What is needed is the skill of narrative co-creation: the act of meaningful story-listening followed by a shared dialogue about possible futures. Concrete events and data intertwine with patient perspective, values, and self-perception.
When the patient’s path becomes uncertain, shared storytelling and story-listening are not only a means to decide on therapeutics — they are our best therapeutic tool. We cannot assume that perceived “benefits” and “burdens” are the same for everyone, especially in the face of complex illness, limited health literacy, and cross cultural relationships where communication and trust may be tenuous.
Cultivating a sense meaning and hope in times of loss and communicating that we share in the journey are acts that heal the soul even as the body falters. I have seen patients get their lives back when I eased their pain with medication, but this benefit pales in comparison to the impact of easing their fear.
As Bones and I reviewed his worsening labs and symptoms, and looked ahead at his biggest concerns, he realized that no pill could restore what years of illness and injury had taken away. We focused on what still gave him joy, like his reconnection with a previously estranged son, whom he planned to bring to our next visit. With a new path in place, “just ask your doctor” proved to be sound advice after all.
Karen Knops, MD is a physician and a patient. She works as a special consultant to the BBN Foundation for compassionate communication in healthcare in addition to clinical practice. She is the creator of the “ASCEND” communication acronym and training program, used for empowering both patients and clinicians to improve communication.