BMJ  2003;327 (11 October), doi:10.1136/bmj.327.7419.0-g

Editor's choice

An extreme failure of concordance

About half of patients with a chronic illness don't take their medicines as prescribed (p 819). They have many reasons, lots of which doctors might regard as "unreasonable," for not doing so. Despite Oliver Wendell Holmes suggesting that if the entire pharmacopoeia were sunk to the bottom of the sea it would be all the better for mankind and all the worse for the fishes, it doesn't seem to be useful for drugs to be invented, researched, described, prescribed, and then not taken. More understanding is needed of what's going on, and this theme issue makes a contribution. In particular, it explores "concordance"—patients and doctors agreeing together about medicines.

My understanding of this elusive concept comes in part from a marvellous book that explores an extreme failure of what might be called "concordance," even though the term is never used in the book. The Spirit Catches You and You Fall Down (New York: Farrar, Straus and Giroux, 1997; ISBN 0 374 52564) describes the complete failure of communication between a Hmong family with a daughter with severe epilepsy and the Californian healthcare system. The family, the doctors, and many others involved—including nurses, social workers, and the judiciary—all wanted the best for Lia Lee, the Hmong child. People in the healthcare system, particularly two paediatricians at the hospital in Merced, went to extreme lengths to provide care—but the end result was disastrous. Lia died a few years after an episode of status epilepticus. The parents thought that the doctors and their drugs had killed her rather than helped. (A filler from the book on p 867 describes some of the problems Lia's parents had with her drugs.) The doctors—who at one stage had Lia taken into care—felt misunderstood, unappreciated, and angry.

The triumph of Anne Fadiman, the author, is that she manages to make the reader understand and respect the views of both sides. She attributes her success to her insignificance. BMJ readers will know about the medical side, but many have probably never heard of the Hmong. They are an ancient people from Laos who were offered residency in the United States after fighting for the CIA in Indochina. They believe that "loss of soul" is the main cause of illness and, like many peoples, that there is a positive aspect to epilepsy—in that its presence marks a person as a possible shaman.

Fadiman makes clear that understanding and cooperation—let's call it concordance—doesn't come easily. It's not just a matter of knowing a language and listening but also of understanding something of both the ancient and near history of a people, their beliefs, and their culture—something that nobody managed. This may seem irrelevant to British doctors treating British patients, but I suspect that the misunderstandings may be less dramatic and obvious but still not easily bridged. Outstanding doctoring may come from doing what Fadiman did—but day after day. That may be concordance.

(rsmith{at}bmj.com)

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