Part of my job is to walk into a room and introduce myself to a stranger, and start asking questions. And when I step across that threshold—into another room to meet another stranger and hear another story—I feel myself stepping into my professional identity. Perhaps if I were a surgeon, I would have a more dramatic defining moment: to scrub and glove and gown and walk into the operating room. Perhaps if I were an obstetrician, it would be the rituals of awaiting and then delivering a new life which would remind me: this is who you are, this is what you do. But I do primary care, and I have no special chamber, no glittering instruments, no recurring moments at the bloody boundaries of life. What I have is that everyday threshold, across which you step to enter the zone of the patient and the patient’s story.
In the fall, I work with a group (or a couple of groups) of first-year medical students, and I take those steps with them into patients’ rooms. Like many medical schools, mine makes an attempt to loop you all the way round, in that very first year, when you are still up to your neck (or any other body part, as the case may be, depending on the curriculum) in gross anatomy. Our attempt is “the patient narrative,” part of a larger course on the patient, the physician, and society. And in the patient narrative meetings, as I take a small group in to talk to a patient, the students are supposed to get a sense of what is waiting for them on the other side of gross anatomy and pathophysiology.
I have a son in medical school, in a different institution. I asked him, as he was beginning his second year of medical school, what his classmates say when they come back from their own “clinical exposures,” and he told me that people come back and say, “Oh, my God, I can’t believe what I saw today.” And as soon as he said that, I began to worry about whether I would be able to provide that oh-my-God moment for my own students, and also to hope that my son’s clinical preceptor would get it right and serve him up something suitably overwhelming. I wanted him to be floored by the experience of talking to a patient. I wanted it to be unexpected and world-changing in a way that would let him know that he had made the right career choice, but would leave him with renewed respect for all there was to learn. And then I thought about that conversation and that responsibility as I took a group of first-year medical students to meet a patient for the first time.
It’s a somewhat calculated attempt to stir them and move them and rock their worlds, and to be honest, like the good students they are, they are generally aware of the goal and prepared to be stirred and moved and rocked. That doesn’t make the experience of interviewing a patient any less real, I suppose. In fact, maybe the surprise for me of participating in this course is that nothing makes the experience of interviewing a patient any less real. Here we are, interviewing someone as a group of four students and an attending, with the patient fully aware that these are students learning to interview—aware, in other words, that this is an interview about interviewing, not about actually making medical care decisions. The conventions of the doctor-patient encounter do not quite seem to apply; we are a study group asking questions with no clinical intentions, as opposed to a single designated clinician—even a clinician-in-training—asking questions with a view toward decision making and therapeutics. And yet, to be in a room with a stranger, to be asking these questions, to be invited to ask these questions, to hear the responses and try to piece the story together, still feels real, and still seems to give some new and different and even astonishing reality to the experience of being a medical student, and a beginner.
In the past, the medical students assigned to me have complained that I tend to take them to see too many pediatric patients, to interview too many parents, occasionally to struggle with adolescents, who can be somewhat frustrating to interview. So I make good resolutions about venturing into the adult ward or the hemodialysis unit or the surgical clinic, but I also want anyone who studies with me to understand the special rhythms of the pediatric interview. And so, with this particular group of students on their first day, I found myself introducing them to a father, on the inpatient pediatric ward.
We stood somewhat awkwardly in a semicircle, the four first-year students and me. We faced “the father,” who had agreed to be interviewed by this group. Before we went in to meet him, I had told the students one sentence about his daughter’s illness; she was in the hospital being worked up for osteogenesis imperfecta. None of them had heard of it, so I took refuge in the conventional cliché: it’s the brittle bone disease, I said. I didn’t try to explain the pathophysiology (I like the way that sentence suggests that of course, I could have explained the pathophysiology, casually off the cuff, if I had been so inclined), and I didn’t tell them anything more about this particular child’s story.
I find that even as I describe this scene, I reach for the medical convention to describe the child, as if I were presenting the case: almost-two-year-old female with rule/out osteogenesis imperfecta, is what it would say on the residents’ sign-out sheet (well, actually, “23mo F r/o OI”). But of course, that wasn’t how the father introduced his daughter—or himself. He was a relatively young man, staying in the hospital with his daughter, who had sustained seven broken bones over the course of her short life. She was confined to her stroller, with her leg, in its cast, carefully positioned and elevated. Before we interviewed him, we admired the little girl, who looked at us carefully out of her serious dark eyes, and finally, when her father talked to her, allowed us a guarded smile.
What he wanted to tell us about was what it is like to be a parent whose child is in the process of receiving a serious diagnosis. A parent who has suddenly learned a great deal about a disease he had never even heard of before, so that two Latin words which would have meant nothing to him a couple of weeks ago are now written in fire—or perhaps in blood—across his horizon.
The students asked questions. One of them asked about family history, and he told her proudly about his grandfather back home on the Indian subcontinent, who was over a hundred years old, and “still walks to the mosque.” No one else with bone problems. No one else with any problems at all, he said.
He told them about the bumpy road to this diagnosis—he had brought the baby to another hospital, to the emergency room, when she had her first fracture, and they had told him nothing was wrong, they hadn’t done an X-ray, and then he and his wife had been so sure that something was wrong, but they had had to go back and protest and insist.
The students asked, somewhat hesitantly, about what the diagnosis would mean for the little girl, if it were confirmed, and he told them that he had been told there was a possibility that her bones might get a little stronger as she got older. But it was clear that he knew that it was a bad disease to live with, and that a small child who has already fractured seven bones in normal everyday childhood activities is probably going to lead a restricted life. Had someone explicitly told him that she might need a wheelchair, that she might need more operations? He didn’t say, and certainly I didn’t ask, but the emotion in his voice made it clear that he understood that this was a serious illness, that it would change the course of his daughter’s life, that nothing would ever be quite the same. And the students got that, and I could see them thinking about it.
He told them that he had a new baby—only a week old, home with his wife, because the hospital ward is not a safe place for babies, since so many children have infectious diseases. And that now the doctors were worrying that the baby should also be checked for osteogenesis imperfecta—this thing, this entity he had never heard of, which was now overshadowing all family joy.
He told them a little about his job history in New York, a job in business, a stint driving a cab, a stint in school.
He told them a little bit about staying in the hospital to keep his daughter company, to wheel her up and down the corridors in her stroller, to make sure that her favorite cartoons were playing—while we talked to him, the baby was watching Dora the Explorer. I hoped the students were getting a little sense of what it is like to live this shadow hospital life; I hoped they were getting a sense of the texture of parental affection; I hoped they were a little bit tantalized by the medical and biochemical and genetic story of a rare disease. But I could also see something else, very clearly, and there is no possible way to put it but this: they were seeing this father as a tragic figure. They were in a room with someone who was going through something terrible, and even as he asked them to pray for him and pray for his family, and even as they nodded, they also knew it: they have chosen a career which brings them into the room with what is truly important in people’s lives, and sometimes what is truly important is difficult and sad and even tragic.
So, after the interview, we went back to a seminar room and sat around a table. We talked about the child’s prognosis, and we talked about the father’s sadness, and we talked about what was happening to his family. And I found myself saying to them, Look at all the narratives going on in this room, look at all the stories to be told.
There’s a genetic story, about a disease which is usually inherited as an autosomal dominant condition, though there is also a recessive form (needless to say, I have since looked all this up and verified my facts), and to meet this father’s needs, we would need to understand the process of sorting out the different types of osteogenesis imperfecta, with their different clinical patterns.
There’s a biological story of bone development, in which defects in Type I collagen prevent the formation of normal strong bones, and we need to remember that the best hope for therapies which might improve a child’s life lies in better understanding of this biology.
There’s a child development story about trying to explore the world when rolling over can break your bones, and whenever we think about chronic illness in children, we have to think about how it integrates into development.
There’s a family story here, and we always have to think about how illnesses happen to whole families.
There’s an immigration story here, a father who came to the United States a decade ago, and worked a variety of jobs, and went home and married and brought his wife back to New York to start a family, and we should think about the life trajectories of our patients and pause, perhaps, to marvel at our own hospital as an international crossroad, and a stop in so many long and complicated journeys.
There’s a day-by-day story of a parent living in the hospital, separated from his wife and his newborn baby, tending a little girl tied into a stroller, and we should recognize the role he’s playing in her health and her mental health; his world may be tottering, but her world is intact because he’s there.
There’s probably even a religious story, since the father clearly identifies his faith as the only thing that keeps him going, since he asked you over and over again to pray for his family, and we should never forget to think about where patients get their strength.
And what I was trying to say, I think, was something like this: Look at all these different narratives crossing and weaving together in this encounter—genetics, biochemistry, family, health care system, politics, religion, economics, immigration—and appreciate and acknowledge that you have undertaken to do your job in situations with many different coordinates to be mapped, with narratives that cannot and should not be simplified.
And here they were, the students, at the beginning of medical training. They didn’t know the genetics or the biochemistry (neither did I, really, off the top of my head, though I could fake it). They didn’t know that osteogenesis imperfecta comes up all the time in pediatrics because it has to be considered in many cases where child abuse is suspected—a more common cause of multiple fractures in a very small child. So there may be a story here of what the medical system put these parents through before anyone realized what was really going on.
And why say all this to students, right at the beginning, before they know what osteogenesis imperfecta is, before they’ve ever thought about working up a child for possible child abuse, before they’ve learned any of the information which will one day maybe let them be helpful to a parent in distress? I think we do it almost as an article of faith: it’s a way of giving them a glimpse of the whole complicated layered tangled story, right at the beginning, when they are too new to this to listen as doctors, much as they might like to. By the time they’re in their third year, they’ll be starting to listen as doctors. They’ll be a little bit obsessed with the science, which they will probably understand much better than I have any hope of doing, since the genetics and the physiology and the biochemistry and the endocrinology will be so much closer, so much newer, so much more up to date in their minds. They’ll be prizing the opportunity to see a rare and interesting disease. They’ll be fresh from the classes where they learned to take histories and carry out physicals, and deeply concerned with playing their parts properly as third-year students, trying to take care of patients and impress their preceptors. They will be at home on a hospital ward—or at least, they will be trying to be at home on a hospital ward. They will still be able to feel the tragedy of a parent grieving for a child’s illness, of course, but everything will be slightly different, slightly skewed. This is one of their last opportunities to talk to a patient without all of those professional filters, to come in equipped simply with humility and humanity.
Now, I am not telling you this story because I want to suggest that there is something wrong with acquiring those professional filters. I hope and believe that all these students—polite, conscientious, intelligent, hardworking—will go on to honorable and useful careers in medicine, and that they will acquire the vocabularies and the knowledge and the perspectives that they need to be of use to patients and their families.
But there’s something peculiar and powerful about standing in the room with them as they listen and look, right now at this moment. It’s as if I am seeing a little through their eyes, I suppose, and being reminded how complicated and tragic the world and the ward really can be. It’s coming face-to-face with a person behind a diagnosis—even if it’s a diagnosis that they haven’t studied yet. It’s saying—and meaning—all over again that every hospital room, every life, is full of stories more complicated and more tangled than we can ever hope to tease out, but also making the commitment to learn to ask the questions and listen carefully to the answers that may help you understand, at least a little.
Clinical medicine is all about stories. I have been writing down stories about becoming a doctor almost since I started becoming a doctor, and I used to value the exercise in part, I think, because I thought it kept me in touch with my original perspectives. I was telling stories in terms that laypeople could understand, and that proved, didn’t it?, that I myself had not been transformed.
That was nonsense. I tell my stories as a doctor now, because I hear stories as a doctor now. I knew the list of interview questions that the first-year students didn’t know, and something in me was anxious to fill in the blanks, to ask the details about the little girl’s development, or the pregnancy history, or whether there were any children in the extended family who had died in infancy or childhood of any cause. I could have asked my questions, extracted all the information, read up quickly on osteogenesis imperfecta, and come away with a clearly organized medical story, and I could feel myself wanting to do it. Instead, I stood there with the students and I let them make of it what they could.
I asked my son, who is a year ahead of these students, what the second-year students say about working with patients. He told me that since starting medical school, they hear from every side that medicine is not the profession it used to be. Every speaker at every ceremonial moment, he said, feels obligated to tell them that they will not get the kind of respect that doctors used to get, that there will always be HMOs looking over their shoulders, that they will suffer from exorbitant malpractice rates. Well, yes, I said, that’s all true. “But then they always say that the most important part cannot be reduced or quantified,” he said. “It’s the ability to help people, the intimacy, the connection, the degree to which you interact with your individual patients.” Well, yes.
At the end, of course, you come back to the whole story, and the whole story is what pulls together all of your medical education. There is the science (and the science is incredibly important), and there is your clinical experience, which teaches you to ask the questions and to listen to the answers, and to listen for what is not said, or for what has not been asked. And there is also your life experience, as a doctor and as a human being. When I stood in the room with the four students and the father and the daughter, what I kept thinking about was what it was like when each of my children was a week old—what it would have been like if I had been home alone with a one-week-old because an older child was hospitalized, away from me, away from the new baby, hospitalized with the worry of a serious diagnosis, with that diagnosis now hanging over the new baby as well…So yes, I lied a little when I said I was listening as a doctor. Or better, maybe, to say that I am also a parent, and that being a parent shapes me as a pediatrician, and changes the way I hear other parents’ stories.
Becoming a doctor means becoming someone who can ask the questions, understand at least some of the answers, juggle all the stories, and in some way accommodate the emotion. None of these is an easy assignment, and together they are an assignment so complicated that it cannot possibly be done perfectly, no matter how smart, how culturally sensitive, how scientifically well versed you may be. But to believe that it could be done perfectly would be to show your limitations; becoming a doctor, I truly believe, means being willing to exist with the anxieties and uncertainties and complexities of a job that is as big as life.
I liked being in the room with those students because they were awed and moved. I know they probably went in there wanting to be awed and moved, but that’s okay. You shouldn’t be going into this job if you don’t want to be awed and moved. And I saw something else. I saw a generous man, in the midst of his own difficult hospital moment, agree to spend time with a group of first-year students, and open up to them (and then give me permission to write about it). When he almost broke down, the students were slightly embarrassed, but the father wasn’t. They were embarrassed for him, I think, worried that he would feel funny about showing such emotion before a group of strangers. He, on the other hand, knew that his emotion was perfectly appropriate, and perhaps he also knew that it was part of what he had to teach them.
So that was the final part of the lesson, and maybe the most important part, and a lesson we all need to learn over and over: this is a very remarkable privilege, this access into people’s lives. This gentleman talked to us because he wanted the students to understand what he was going through, he wanted his experience and his daughter’s experience to be part of their understanding of medicine. He wanted to tell them that he had had some bad encounters with the medical system, and he wanted to tell them to listen to parents, and to take a second look at children when parents are worried. He wanted to tell them that there are a lot of bad diseases out there which need treatments and cures. And because he wanted to tell them all these things, he was willing to let them into his room, into his afternoon, into his life. And since they will draw much of the rest of their medical training, as we all do, from the kindness of strangers, these students got a hint of both the majesty and the oddity which come with sitting in on the most intense and most dramatic moments in the lives of all these people you don’t even know. Of asking them questions and examining their bodies, of teasing out their bodies’ chemical and electrical and hormonal secrets, until your memory is stocked with stories and presenting illnesses and differentials and complications, with good outcomes and bad outcomes. Becoming a doctor means accepting your right to ask these questions and hear these stories, and it means giving over to them a big place in your brain and your memory.
I was building toward some kind of peroration in which I would enjoin my students to remember the gratitude we owe the patients who allow us to learn on their bodies and on their stories and on their lives, but I could see that it wasn’t necessary. They knew who was their real teacher that day, and they had already said thank you for the privilege. And it occurred to me that the intersection of their own professional trajectories with this “patient encounter” was a rather remarkable moment, and that if I had any sense, I would stop pointing out didactic morals, and concentrate instead on listening to the complicated stories going on around me. The students had entered that zone of the patient’s story, and I was privileged as well to have watched them cross the threshold.