In the hospital clinic and emergency room, Dr. Ofri sees patients who present a wide variety of conditions and symptoms: hypertension, diabetes, paraplegia, emotional distress, heart disease, cancer, Alzheimer’s, elevated cholesterol, headaches, and, in one case, even effects from a hunger strike. In her writing and editing, she finds stories in patients and experiences of the body. Her recent book, Medicine in Translation (Beacon Press, 2010), centers on her patients who are immigrants to New York and explores the challenges of illness as a kind of disruptive journey, one that involves the physician as a guide and interpreter as much as caregiver.
I spoke recently to Dr. Ofri about her use of narrative in her practice, thoughts on illness as a journey, and dramatic arcs in life and literature. She shares new stories, too, of patients with diabetes.
Danielle, your book Medicine in Translation makes clear that, in the course of treating your patients, you seek to learn something about their lives beyond their lists of symptoms, numbers, and medications. In therapeutic terms, what do you get as a doctor from your patients’ biographies?
By inquiring about my patients’ biographies, I get a much fuller picture of their lives. Most diseases and illnesses don’t exist in isolation, so if someone has a leg ulcer that needs dressing changes, for example, and that person is homeless, he or she won’t be able to adequately take care of the ulcer. There are some people who don’t have enough organization to give themselves insulin according to a sliding scale. And of course a sliding scale is utterly impossible if you aren’t able to read. A lack of a steady source of income, or a steady source of meals for that matter, is a big problem for patients with diabetes.
All these “nonmedical” things are quite relevant to the medical care. Furthermore, I think patients’ stories also make the encounter more interesting. Medicine can get repetitive at times, and the fun of it is in learning who people are. Even more than that is making a satisfying doctor-patient connection: I know who they are, and they know who I am. We can bank on that trust when an ethical decision or end-of-life issue comes up. Having a basis of connection makes it much easier.
And have you thought about what you give to your patients by allowing them to tell their stories to the doctor caring for their body?
What the patients get is a chance to be the expert. Often in a patient-doctor interaction, the doctor is the expert. There’s an enormous power differential, and the patient might feel uncomfortable, confused, and not on her own turf. But, when patients are telling me about their lives, they are the experts. This expertise can even have a clinical benefit. When I was pregnant, my female, middle-aged patients had tons of advice to give me. As they were sharing their wealth of expertise with me, many of their aches and pains disappeared.
As a writer, what about a patient’s story alerts you to wanting to tell it?
Usually, the story does not become apparent to me at the time that it’s actually happening. Often it’s long after the fact. For outpatient primary care, it can be after years of care that the story seems to appear. Even for inpatient care, which is faster paced and can seem more “dramatic,” it can be a long time until I see what could become a story. But always, it has to be a patient who has brought something special to our encounter or has touched me, or who has offered something that others can learn from. Both the character and the situation must be compelling.
Can you give me an example of a patient story you might want to go deeper on?
I saw a patient with Type 2 diabetes in the clinic recently. A few months ago, he’d lost his job, and with that, his insurance. Between the lack of resources and the emotional turmoil resulting from the job loss, he was unable to care for his diabetes. Whenever his glucose rose over 400, he’d show up at an ER, get a couple of units of insulin, and then go home. He went from ER to ER for several weeks until he finally made it to our clinic.
Hearing his whole story drove home the point about how crucial the “nonmedical” aspects of a disease are, about what it means to have a disease like diabetes, lose your insurance, and not have regular checkups. Sure, this patient could have been a little more together and made his way to a clinic sooner, but the system didn’t offer him much other than emergency rooms. His illness got to where it was because of circumstances that were not necessarily intrinsic to the pathophysiology of diabetes. In this and other stories I might want to tell, there’s always something above and beyond the disease. A person’s life has a dramatic arc in both a real-life and a literary sense.
How does the lack of universal health care in the U.S. affect the stories that you hear and the ones you, as a writer, want to tell?
I definitely see a new crop of patients: working class people who had jobs, then lost their jobs, and lost their insurance as a result. One woman I took care of had a mid-level banking job and then her entire division was eliminated, without warning. She had diabetes and hypertension. Because she felt stressed, she started eating more, gaining weight. Her sugar and blood pressure were out of control, and this made her more stressed. All of these things were spiraling, but she delayed seeking medical care because she was nervous about the cost. If the lack of health insurance were not an issue for her and so many people, it would be so much easier for them to take care of their conditions. In Medicine in Translation, among my favorite chapters are the ones that describe the year in Costa Rica your family enjoyed as a sabbatical from your and your husband’s work. I was especially moved by the passage in which you describe a moment shortly after you delivered your baby Ariel in the local hospital there, and two nurses, Esperanza and Zenelia, cared for you in a way you say you had never experienced in your adult life: “completely.” Has that experience with the Costa Rican nurses affected your beliefs about how a clinic or hospital might care for its patients?
I certainly have thought about this as an ideal, and I wonder why it was possible there. Maybe we’re simply too busy here in the U.S., or maybe we’re more focused on the technological rather than the “caring-for” aspects of health care.
That experience stays in mind because it was one of my only experiences being a patient, and it was so potent. Sometimes in situations with patients where I can’t do much medically – terminal illness, for example – I try to remember that scenario, and so I think: What can I offer that would make them feel cared for?
It sounds almost improvisatory, a spontaneous, human moment.
Yes. It must be like what a baby feels: to be totally cared for.
Danielle, in a recent editorial for CNN.com, you wrote compellingly about immigrants and health care. You also framed an interesting metaphor around immigration and illness when you wrote, “When people become ill, they are immigrants from the land of the healthy to the land of disease. This immigration can result in as much upheaval and disorientation as immigration from nation to nation.” It’s fascinating to think of illness this way, as travel to a new land. Can you say more about this?
In my second book, Incidental Findings, I have a chapter called “The Journey.” It was about a patient who was a prisoner and hadn’t had much medical care. He had diabetes, kidney disease, congestive heart failure, and hypertension, none of which had ever been diagnosed or treated until this moment. I was the person who ended up telling him how bad his condition was, that his painful neuropathy was unlikely to improve. He’d never thought of himself as sick before.
In this moment he was started—painfully—on this journey from the land of the healthy to the land of the sick. It is a kind of immigration, a moving over to an entirely new culture It was a shock for him, suddenly learning that he was not the healthy person that he thought he was.
There is a wonderful poem, called “Emigration” by Tony Hoagland, that evokes this moment of transition. I use this poem frequently with my medical students.
For these patients who are like immigrants, going from the land of health to one of chronic or acute illness, how would you characterize your role as a doctor?
The interpreter of maladies, to borrow a phrase. In a sense the doctor is a guide, the interpreter, because illness is a new language. Even if the person speaks English, the illness is still a new language, a new culture. Every patient needs an in terpreter.
Ah, yes. My experience with diabetes has been like learning a new language, and how a new terminology connects to what I do for myself, and how I talk to my doctor and other people about diabetes. For your patients, I imagine that there must be different literacy levels, or even tolerance for information, that must make you adapt your guidance, your interpretation. Can you talk about that?
In Medicine in Translation, in the chapter about Mrs. Liang, I describe an experience of trying to use an interpreter with a Mandarin-speaking patient, trying to relay a cancer diagnosis. It was so difficult to talk about such a serious issue without being able to rely on nonverbal language, body cues, tone of voice, and expression. These clues guide a doctor as to how far to go with a patient in communicating such information.
I was just at Hiram College in Ohio this week, speaking to undergraduates about the story of Mrs. Liang. When the topic of nonverbal communication came up, one student resisted this message and argued that “cancer is cancer is cancer.”
“Not at all,” I said. “Every cancer is different because every person is different.” People take medical information in unique ways; you can’t give everyone the same news in the same way. Some patients want a doctor to be blunt, and others need a more measured approach, but we don’t always know this in advance. Nonverbal signals can tell a doctor if and when to go further, or when to stop or back up.
Tell us about you as a reader. What are the books and magazines on your bedside table or desk at home right now?
Of course, the New York Times. I thoroughly enjoyed Abraham Verghese’s Cutting for Stone, one of the best novel’s I’ve read in a long time. I am currently reading Elif Batuman’s The Possessed: Adventures with Russian Books and the People Who Read Them. I love Ian McEwan’s books and am looking forward to reading his newest one, Solar. And keeping up with the New Yorker is a weekly endeavor that typically crowds out the reading of my medical journals.
As an editor, what do you look for in narratives of illness, experience, or the human body? What qualities make you want to work on and publish a story written by someone else?
In the spring issue of Bellevue Literary Review, we published a nonfiction piece called “The Wills of Twenty Strangers,” about a medical student’s experience with cadavers. We have gotten a lot of anatomy lab essays over the years, but this one stood out because it really tried to think about the person on the table, above and beyond the experience of cutting open the body. A cadaver is the first patient contact that a medical student has, and this writer frames that encounter as a doctor-patient relationship. This has resonance for how we imagine the larger scheme of doctor-patient relationships.
What makes something literary is that it’s transcendent. It’s more than just the story at hand. At the review, we get many submissions that document an experience of cancer, or caring for a relative with dementia. While these are meaningful experiences to the writers, they do not necessarily make dramatic pieces of writing in the literary sense. There has to be something more than its own story: It must transcend its own plot. “Message” might be the wrong word, but I would say there has to be a greater lesson beyond what happened to this one person in this situation.
Jane Kokernak contributes regularly to ASweetLife. She teaches in MIT’s Writing Across the Curriculum Program and lives with her family near Boston.
* Author photo by Joon Park.