Thursday, September 17, 2015

A story that I hope ends up being true

“Every person contributes,” he says. “You don’t have to join the Peace Corps to do something worthwhile. I don’t like it when her friends act like her job isn’t as important to the world as theirs.” He tells me about his 21-year-old daughter. She recently graduated from college and got her first job in communications, and he’s proud of her. “Do you have kids?” he asks.
He is 44 years old and battling anaplastic myeloma. I’m not sure of the precise ways in which it’s different from regular myeloma, but I know it’s bad. After two failed bone marrow transplants, he’s been admitted for salvage chemotherapy, but it has been complicated by respiratory syncytial virus and parainfluenza pneumonias and now increasing fevers with progressing pulmonary infiltrates for which his hematology team asked for infectious diseases consultation. That’s when I meet him...
We recommend a few more tests, trying to balance the benefits of figuring it out vs the risks of further invasive procedures. We suggest empirical broad-spectrum treatments to cover all the usual suspects, but we don’t get any new answers and his condition seems to be worsening—continued coughing, increasing infiltrates on another chest CT, new frontal lobe strokes on a head MRI done for changes in his neurologic examination. He recognizes things are not going well and asks to go home.
I almost don’t see him that last day because it’s hard to face him with no answers.
“Yes, I have kids,” I say, “a 12-year-old daughter and a 9-year-old son.” And that simple response opens the door. The vast space between helpless physician and suffering patient, the one where shame and disappointment can live and grow, is bridged in an instant, and for the next several precious minutes, I realize how glad I am that I came. The smells and sounds of the bone marrow transplant unit disappear, and we talk. He tells me about his twin daughters and how different they are from each other. We talk about the challenges of raising kids in the time of social media and iPhones. He explains what it means to work as an economist. I assume too simplistically that it’s all about math, but he describes it is more about theories, about “telling a story that you hope ends up being true.” “Math for me was a means to an end,” he describes, “but I never really understood math in the way a mathematician does.” I hear admiration in his voice as he describes his friend in Haiti “who has one of those minds. One that thinks and understands like a mathematician.” He makes his profession sound like one he sort of fell into “when I decided not to become a lawyer and just kept going on to get more degrees in economics,” culminating with his PhD. “There are only about 50 people in the country who do what I do,” he says, though with humility that wants you believe he chose it because there wasn’t much competition. He insists you have to be “way more brilliant” to be a doctor than an economist, but I don’t think either of us believes this.
I am surprised to look at my watch and realize 20 minutes has passed. As I reluctantly become the doctor again, I ask if I can examine him and slide back into the usual routine. I listen to his lungs with my stethoscope and hear the same wet-sounding crackles and wheezes throughout his lower lobes that have been there for days … the ones we have not been able to fix. “I hear you may get to go home soon,” I say. “Yes,” he replies, a smile spreading across his face. “Even if I’m too tired to do much, I like to just lie down and watch my kids run around.”
“That sounds wonderful,” I say. “We suggested a couple of oral antibiotics to your team that they could prescribe when you leave to cover most of the usual bugs. They should help protect you while your immune system is so impaired.” As the words leave my lips I realize I am also telling a story that I hope ends up being true. He seems to understand we’ve found no unifying diagnosis that we can treat to make him better. But still he says, “Thanks. Thank you for coming and talking with me.” Not “Thank you for fixing my infection with your medicine.” Not “Thank you for figuring out the obscure diagnosis that nobody else could find.” And certainly not “Thank you for curing my cancer.” We have done none of these things. He thanks me for coming into the room. And in these simple words of gratitude, he reminds me of the healing power of care, conversation, explanation, and reassurance. Of why, even when we don’t have the answers, we should still go into the room.
I am home putting away dishes later that night when I feel a rush of gratitude for that simple conversation. It hits me suddenly, as I place a clean drinking glass in my cupboard, the gift of those small moments. All those things he could have been—angry, depressed, disengaged, hopeless—he wasn’t. And all those things I could have been—ashamed, helpless, avoidant, exhausted—I left outside the door. Something about our conversation felt like forgiveness. At a time in his life when fear and self-focus would be expected, he was still so fully and remarkably looking out—sharing, wondering, teaching. And he brought me with him for a few moments. While modern medicine was failing both of us, he treated me as a human, not as a doctor, and led us to that place where the power to heal remained.
Stead W. A PIECE OF MY MIND. A Story I Hope Ends Up Being True. JAMA. 2015 Aug

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