I lost myself in the very properties of [my patients‘] minds, for the moment at least, I actually became them . . . so that when I detached myself from them at the end of intense concentration over an illness that was affecting them, it was as though I was awakening from sleep. For the moment I myself did not exist, nothing of myself affected me. As a consequence, I came back to myself as if from any other sleep, rested.
William Carlos Williams, M.D.
A pale, thin, anxious 9-year-old boy sits in front of me. As I start to talk to him, I realize that he is in pain, stoic, and not very verbal. I glance down and notice a markedly swollen ankle. He has been losing weight and uncomfortable for months, his anxious parents report. The pain seems to come and go, but now it’s so severe that he has trouble getting off the bus.
I gently probe for more information. “Have you had diarrhea?” I ask the boy. Yes, he nods. His mother looks startled; he has obviously never mentioned it to her. “Any blood in the diarrhea?” He nods again, and now we’re both startled. The boy looks even more anxious, and I’m aware of his parents’ escalating panic. It’s then that I realize that this is one of those critical moments. I’ll confess that most of the time, I’m not the slow, thoughtful, organized, wise physician with an endless fund of knowledge that I always imagined I’d become. More often, I’m the harried, absent-minded doctor who rushes into the room an hour late and tries to organize her thoughts in front of you as you remind her who you are and why you’re there. But at moments like this, I become completely focused. William Carlos Williams, the poet and primary care physician, eloquently described these moments and the intensity of the relationship between doctors and patients as they embark on the treatment of a serious illness.
Such moments occur at most a few times a month, usually when I least expect them. I walk into an exam room prepared to hear about a straightforward problem or to see a child with pain “everywhere” who’s struggling with the social challenges of middle school, and then, as I listen, I realize that the person in front of me is seriously ill. Sometimes the patient or the parents already know; sometimes they have no idea. The dawning of this realization is followed by a call to full attention. In the next hour and over the next few months, what I do (or don’t do) will change the life of this child and family; what I say and how I say it will be critical, providing the information, reassurance, and hope to keep everyone moving forward.
With this boy, Sam, my questions and exam follow the usual order, and then it’s time to talk. I remind myself of my responsibilities — education, treatment, support, advocacy. I look into Sam’s eyes and try to describe, in language he can understand, general concepts that will give him a sense of what’s happening in his body. This basic explanation is usually adequate for the parents as well, who are often in a state of shock; we’ll have more time to talk later.
I explain it to Sam first, respecting the fact that it’s his body and he is able to understand — and needs to know — what’s happening. It’s an important step in showing him respect and giving him back some control. We’re beginning a relationship, and obtaining his trust will be key to getting his cooperation. I want him to know that I see who he is, care about what he thinks, and will be his ally.
As I talk, I envision myself building a protective wall around him and his parents to hold back the wave of fear, vulnerability, and loss of control that is rushing in as they realize something serious has occurred. I look into his eyes and explain with confidence and reassurance that things will get better. I offer hope: “We know what this is, and together we will get you better.” We are now a team, and he’s the most important team member. We discuss the possible diagnoses, treatment, the need for a GI referral, and how to reach me over the next few days.
As I leave the room, I feel like I’m rising to the surface of the water after a deep dive. I have been in another world, where outside sounds are muffled and time slows. Now I reemerge in the noisy, fast-paced world of outpatient medicine. I’m an hour behind schedule, and the nurses — and my next patient — are understandably annoyed. A long day awaits. But somehow the rest of the day is easier. The world comes into better focus. I have been reminded of why I’m here and how lucky I am to be doing what I do.
In the afternoon, I pass the pediatric gastroenterologist, who reassures me he will see Sam quickly, and within a week he’s diagnosed with Crohn’s disease and starts treatment.
I see Sam regularly over the next few months. I smile when I go into the room, look at him first as I say hello, and ask how things are going. I’ve learned to warn my patients about the ups and downs of glucocorticoid treatment: first, there’s relief when the medicine finally controls the symptoms, then there’s discouragement about side effects and changes in appearance and mood, followed by the struggle to discontinue them as the other medications begin to work. It’s an emotional roller coaster, and it’s my job to prepare them.
Sam has followed this path. There’s the visit at 4 weeks when the diarrhea has stopped and the joints are not painful. He is still quiet but looks relieved. When he returns at 8 weeks, he is markedly cushingoid, embarrassed, and dejected — it’s not easy to have a pumpkin face with acne in elementary school. Again, I sit next to him and look directly into his eyes. Sometimes this is not so easy with teens and preteens, who tend to stare down at the floor. In an attempt at humor, I bend down and turn my head up so I can see his face. “It will be better,” I reassure him. “A few more weeks.” He smiles. I walk him through the treatment plan again. I explain what’s happening to his body and go over the timelines.
By the 12th week, he is still cushingoid but surprisingly chatty and looks straight into my eyes as he reports what’s happened since the last visit. He seems to understand now that I am here to see and talk to him, and he is proud of his role in managing the illness. He looks more hopeful. The prednisone dose has been reduced, and he knows the tapering schedule well enough to correct his father, who is momentarily confused about the gastroenterologist’s treatment plan. He sees the light at the end of the tunnel.
Sam and his parents are at the beginning of a long journey. This illness will influence who Sam will become — affecting his self-image, relationships, and aspirations. His parents face one of life’s most difficult challenges. The course of their lives and their relationship shifted, almost imperceptibly, at that first visit. How their story will play out is still unclear to me, although I’ve seen hundreds of other versions of it over the years.
This time, I’ve been lucky enough to be there from that critical moment at the beginning, to be a part of the story’s evolution and, I hope, acceptable resolution. All physicians experience these moments. They shape our lives, inform our values, and educate and prepare us for the next patient who needs our help. The expectation of these moments and the satisfaction they bring keep us moving forward through difficult times. The challenge is to continue to notice them — to remember the personal impact of the diagnoses we make and our ability and obligation to soften the blows, to build that protective wall.