As I Live and Breathe: Notes of a Patient-Doctor

By Danielle Ofri
New England Journal of Medicine

(Review of As I Live and Breathe: Notes of a Patient-Doctor, by Jamie Weisman)

All medical students are required to write “history and physicals” (“H&Ps”) about their patients. In our urban clinic, I ask students to write one H&P in a narrative format — that is, to have the patient describe for the student what it is like to have a particular disease and what advice he or she might provide to a doctor in training. As I Live and Breathe is a lucidly woven answer to such questions. Jamie Weisman refrains from directly proffering advice; instead, it is her incisive perspective from both sides of the clinical coin that will enlighten both medical students and experienced physicians. Weisman received a diagnosis of a congenital immunodeficiency disorder at the age of 26, after more than a decade of undiagnosed and misdiagnosed illnesses. A fragile but imperfect truce established by monthly immune globulin infusions allowed her to channel her curiosity about her disease into the practicalities of medical school. Written toward the end of her medical residency, As I Live and Breathe is an unaffected examination of life as both physician and patient.

Perhaps the most illuminating part of the book, and what I hope medical students learn when they write a narrative history, is the chapter entitled “All Too Human.” First, Weisman offers a standard H&P that describes one of her multiple hospitalizations for an infected parotid gland. The case history glides smoothly by to the average medical eye, with a hospital course that reads like a textbook description of successful medical therapy. The infection was diagnosed and appropriate cultures, imaging studies, and consultations were obtained. Antibiotics were administered, and the patient was discharged afebrile. This succinct H&P is followed by the harrowing narrative of what actually happened to Weisman. The sheer number of medical errors, whether due to poor clinical judgment, laziness, arrogance, false leads, or just plain bad luck, is enough to make any clinician shudder, and none of the errors, of course, manage to enter the official H&P. But the starkest conclusion that materializes when these two recountings of the same events are exhibited side by side is that the standard H&P is inherently, and disastrously, ill equipped to convey the interconnecting and conflicting layers of a patient’s experience.

Take, for example, what would seem the simple decision to admit a patient to the hospital, an event that is taken for granted and expressed in three words of the H&P. After several days of nursing her infection at home, Weisman reluctantly calls a covering doctor to consider hospital admission. This physician is obviously irritated at the after-hours call, and his approach — he pressures her to stay home and wait it out — is juxtaposed against her recollection of an earlier parotid infection that led to sepsis and a prolonged stay in the intensive care unit. With fever, shaking viagragen chills, and known immunodeficiency disorder, Weisman has to fight with him to receive appropriate medical care, but then she herself hesitates. Her knowledge that this infection is life-threatening is tempered, thankfully only briefly, by the knowledge that if she is admitted, she will have to commit the cardinal sin of calling in sick to her residency program, causing a fellow intern to work in her place.

These complexities and subtleties, which are missed by the standard H&P, are Weisman’s teaching points. She does not lecture us, but merely offers observations of the disconnection between the physician’s and the patient’s equally “true” but vastly different experiences of an illness. Weisman reflects on the community of chronically ill patients, who have been her companions and teachers over the years. “Most people live in fear of some terrible event changing their lives,” Weisman writes, with a wisdom that belies her youth. “For the chronically ill, this terrible event has already happened, and we have been let in on an amazing secret: You survive. You adapt, and your life changes, but in the end you go on, with whatever compromises you have been forced to make, whatever losses you have been forced to endure. You learn to balance your fears with the simple truth that you must go on living.”

The fear of death is plaited calmly into Weisman’s day-to-day existence, much like an overbearing but ultimately tolerable relative who was moved, unbidden, into one’s home. She is honest with herself, and those around her, that her odds might not be as good as others’. As she faces the possibilities of parenthood, she gains a profound empathy for the fear and impotence her parents must have endured watching their child fall ill, repeatedly and mysteriously. She recognizes the bravery of her husband, who has cast his lot with her, knowing that their domestic normalcy may include chemotherapy and stays in the intensive care unit. These realizations keep Weisman moving forward, not with mawkish courage in overcoming the odds, but with the sense that she has shaken hands with death and accepted its presence in her life. There are aspects of death that have grudgingly gained her respect, even her awe, and that reside side by side with her fear. “Human beings are a tangle of emotion and memory, of aspirations and compulsions, of passion and faith. When a human being dies, nothing can replace him. . . . [It] is like a species becoming extinct.” It is precisely because Weisman is not preachy or resentful that her lessons are painless and can be appreciated. The prose is lovely, often lyrical, making the book accessible to a wide, general audience. It would be simple to recommend this book as required reading for all medical students, but As I Live and Breathe is perhaps more important for experienced clinicians who might have missed some of these pearls along the way.