The double and highly publicised tragedy of Charlie Gard dying of mitochondrial disease and his parents and the hospital arguing over his treatment and now his means of dying has made me think of The Spirit Catches You and You Fall Down by Anne Fadiman, a marvellous book. The book tells a similar story of both parents and a hospital wanting to do their very best for a sick child and yet completely failing to understand each other. I wrote about the book in the BMJ in 2003:
“My understanding of the elusive concept “concordance” (patient and doctors agreeing together about treatments) 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 describes the complete failure of communication between a Hmong family with a daughter with severe epilepsy and the Californian health care 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 health care system, particularly two paediatricians at the hospital in Merced, went to extreme lengths to provide care—but the end result was disastrous. Lia suffered severe neurological damage a few years after an episode of status epilepticus. The parents thought that the doctors and their drugs had killed her rather than helped. 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 (see the extract from the book below). 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 concordadoesn’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.”
Extract from the book:
“Despite the admonitions of the seven doctors, I decided to try to meet Lia’s parents, bringing May Ying as my cultural broker. I figured that if she was the third-most-poised Hmong woman in the United States, she had as good a chance of anyone as being able to deal with the Lees. Despite May Ying’s impressive qualifications, she and I, by virtue of our gender and ages, constituted a decidedly low-status team. This turned out to be an advantage. I didn’t need more status in the Lee home. If anything, I needed less status. Ever since they arrived in the United States, the Lees had been meeting Americans who, whether because of their education, their knowledge of English, or their positions of relative authority, had made them feel as if their family didn’t count for much. Being belittled is the one thing no Hmong can bear. When Laos was under French colonial rule, the Hmong were required literally to crawl whenever they were in the presence of a Lao official, forbidden to raise their heads until they were acknowledged. It is no accident that in one popular Hmong folktale, an arrogant official is turned into a mouse, upon which the tale’s hero, a Hmong archetype in the guise of a cat, takes delight in pouncing. With Ma Ling at my side, I was not an official, not a threat, not a critic, not a person who was trying to persuade the Lees to do anything they did not wish to do, not even someone to be taken very seriously. My insignificance was my saving grace.”