Kleinman is a psychiatrist and anthropologist; The Illness Narratives focuses on the interrelationship of illness, narrative and interpretation. (I previously blogged about his book, What Really Matters: Living a Moral Life amidst Uncertainty and Danger (2006) in my February 11th post, Foghorns & Lighthouses).
In particular, Kleinman argues that the experience and treatment of chronic illness should be understood as "a symbolic bridge that connects body, self, and society" and that one result of this interconnection is that "our social world is linked recursively to our inner experience." Ultimately, "illness has meaning; and to understand how it obtains meaning is to understand something fundamental about illness, about care, and perhaps about life generally."
Kleinman takes issue with the way in which medicine is typically practiced in the United States, arguing that "[o]ne unintended outcome of the modern transformation of the medical care system is that it does just about everything to drive the practitioner's attention away from the experience of illness."
In a system focused on diagnosis and treatment, we tend to lose sight of the fact that illness is not simply a clearly delineated medical condition, but a lived experience--and, in the case of chronic illness, it is typically a long-term and ongoing experience with ups, downs, and even occasional plateaus. The American medical establishment is less comfortable with chronic illness, Kleinman argues, because chronic conditions don't generally follow a neat trajectory from symptom to diagnosis to treatment to cure.
Doctors too often fail to pay attention to what the illness means to the patient: in particular, Kleinman suggests, they are not trained to deal with the ways in which the patient's social and familial context, history and reaction can shape both their experience of their illness and its ongoing treatment. As Kleinman points out, "there is a dialectic at the heart of healing that brings the care giver into the uncertain, fearful world of pain and disability...".
Kleinman makes this point most forcefully at the outset of his book when he describes how, as a med student, he was confronted with the case of a seven-year-old girl with severe burns:
She had to undergo a daily ordeal of a whirlpool bath during which the burnt flesh was tweezered away from her raw, open wounds. This experience was horribly painful to her. She screamed and moaned and begged the medical team, whose efforts she stubbornly fought off, not to hurt her anymore.Kleinman's job was to hold her hand and, in essence, try to distract her so that the surgical resident could do his job.
Initially, Kleinman tries to talk to the girl about her life outside of her painful experience--he asks about "her home, her family, her school--almost anything that might draw her vigilant attention away from her suffering." As he acknowledges, the experience of her treatment was almost more than he himself could bear--he admits, "I could barely tolerate the daily horror."
One day, however, he simply asks her to tell him what she is experiencing: "I found myself asking her to tell me how she tolerated it, what the feeling was like of being so badly burned and having to experience the awful surgical ritual, day after day after day."
To his surprise, she tells him:
She stopped, quite surprised, and looked at me from a face so disfigured it was difficult to read the expression; then, in terms direct and simple, she told me. While she spoke, she grasped my hand harder and neither screamed nor fought off the surgeon or the nurse.This becomes their ritual; having established the child's trust, Kleinman finds himself listening on a daily basis to the girl's sense of her own traumatic injury and its experience. And although simply listening might seem nearly unbearable under such circumstances, it appears to alleviate the child's experience of her treatment.
More importantly, Kleinman observes, this experience taught him "that it is possible to talk with patients, even those who are most distressed, about the actual experience of illness, and that witnessing and helping to order that experience can be of therapeutic value."
To listen is to help heal: this is the lesson that Kleinman internalizes and that he hopes American medicine can learn to practice more regularly and systematically.