A Life in Medicine

Lia is a young Hmong patient with a catastrophic seizure disorder. The struggle of her parents, Foua and Nao Kao, to provide care for their daughter results in clashes with both the medical system and the child welfare agencies. In the end, Lia is declared legally “brain dead,” and the debate rages as to who was to blame: the parents, who failed, in the early part of Lia’s illness, to provide the prescribed medicine, or the American doctors and nurses, who failed to understand the Hmong culture and work out a resolution when their values and beliefs collided.

The Spirit Catches You and You Fall Down is an in-depth examination of the struggle between value systems and cultures, one having applicability to every encounter mainstream medicine has with patients from other cultures. The “ability to communicate effectively” with patients and their families is a complex and challenging charge in a multicultural world.

ANNE FADIMAN is a journalist and editor of The American Scholar. The Spirit Catches You and You Fall Down was awarded a National Book Critics Circle Award for Nonfiction.

Since Lia’s brain death, whatever scant trust Foua and Nao Kao had once had in American medicine had shrunk almost to zero. (I say “almost” because Foua exempted Neil and Peggy, Lia’s primary care physicians.) When their daughter May broke her arm, and the doctors in the MCMC (Merced Community Medical Center) emergency room told them it needed a cast, Nao Kao marched her straight home, bathed her arm in herbs, and wrapped it in a poultice for a week. May’s arm regained its full strength. When a pot of boiling oil fell from the electric stove onto Foua’s skirt, setting it on fire and burning her right hip and leg, she sacrificed two chickens and a pig. When Foua got pregnant with her sixteenth child, and had an early miscarriage, she did nothing. When she got pregnant with her seventeenth child and had a complicated miscarriage in her fourth month, Nao Kao waited for three days, until she started to hemorrhage and fell unconscious to the living room floor, before he called an ambulance. He consented to her dilation and curettage only after strenuous—in fact, desperate—persuasion by the MCMC resident on obstetric rotation. Nao Kao also sacrificed a pig while Foua was in the hospital and a second pig after she returned home.

Before she was readmitted to Schelby, Lia was routinely vaccinated against diphtheria, pertussis, and tetanus. At about the same time, she started to develop occasional seizurelike twitches. Because they were brief, infrequent, and benign—and also, perhaps, because he had learned from bitter experience—Neil decided not to prescribe anticonvulsants. Foua and Nao Kao were certain that the shots had caused the twitches, and they told Neil that they did not want Lia to be immunized ever again, for anything.

Dan Murphy, who became the director of MCMC’s Family Practice Residency Program, once told me that when you fail one Hmong patient, you fail the whole community. I could see that this was true. Who knew how many Hmong families were giving the hospital a wide berth because they didn’t want their children to end up like the second-youngest Lee daughter? Everyone in Merced’s Lee and Yang clans knew what had happened to Lia (those bad doctors!), just as everyone on the pediatric floor at MCMC knew what had happened to Lia (those bad parents!). Lia’s case had confirmed the Hmong community’s worst prejudices about the medical profession and the medical community’s worst prejudices about the Hmong.

At the family practice clinic, the staff continued to marvel at the quality of care the Lees provided to their clean, sweet-smelling, well-groomed child. But at the hospital next door, where the nurses had had no contact with Lia since 1986, the case metastasized into a mass of complaints that grew angrier with each passing year. Why had the Lees been so ungrateful for their daughter’s free medical care? (Neil—who did not share the nurses’ resentment—once calculated that, over the years, Lia had cost the United States government about $250,000, not counting the salaries of her doctors, nurses, and social workers.) Why had the Lees always insisted on doing everything their way? Why—this was still the worst sin—had the Lees been noncompliant? As Sharon Yates, a nurse’s aide, told me, “If only the parents had given Lia the medicine, she wouldn’t be like this. I bet when she came back from that foster home, they just didn’t give her any medicine.”

But I knew that when she returned from foster care, Foua and Nao Kao had given Lia her medicine—4 ccs of Depakene, three times a day—exactly as prescribed. Hoping to clear up some questions about Lia’s anticonvulsants, I went to Fresno to talk with Terry Hutchison, the pediatric neurologist who had overseen her care at Valley Children’s Hospital. I had noticed that in one of his discharge notes, written nine months before her neurological crisis, he had described Lia as “a very pretty Hmong child” and her parents as “very interested and very good with Lia.” I had never seen phrases like that in her MCMC chart.

Bill Selvidge had told me that Dr. Hutchison was “a known eccentric,” beloved by his residents for his empathy but dreaded for his insistence on doing rounds at 4:00 A.M. He had an exiguous crewcut and on the day I met him was wearing a necktie decorated with a large bright-yellow giraffe. A sign in the hall outside his office, hung at toddler eye level, read:

“Lia’s brain was destroyed by septic shock, which was caused by the Pseudomonas aeruginosa bacillus in her blood. I don’t know how Lia got it and I will never know. What I do know is that the septic shock caused the seizures, not the other way around. The fact that she had a preexisting seizure disorder probably made the status epilepticus worse or easier to start or whatever, but the seizures were incidental and not important. If Lia had not had seizures, she would have presented in a coma and shock, and the outcome would probably have been the same, except that her problem might have been more easily recognized. It was too late by the time she got to Valley Children’s. It was probably too late by the time she got to MCMC.”

“Absolutely nothing. The only influence that medications could have had is that the Depakene we prescribed might have compromised her immune system and made her more susceptible to the Pseudomonas.” (Depakene occasionally causes a drop in white blood cells that can hamper the body’s ability to fight infection.) “I still believe Depakene was the drug of choice, and I would prescribe it again. But, in fact, if the family was giving her the Depakene as instructed, it is conceivable that by following our instructions, they set her up for septic shock.”

Driving back to Merced, I was in a state of shock myself. I had known about Lia’s sepsis, but I had always assumed that her seizure disorder had been the root of the problem. The Lees were right after all, I thought. Lia’s medicine did make her sick!

That night I told Neil and Peggy what Dr. Hutchison had said. As usual, their desire to ferret out the truth outweighed their desire—if indeed they had one—to defend their reputation for infallibility. They immediately asked for my photocopy of Lia’s medical chart, and they sat together on Bill Selvidge’s sofa, combing Volume 5 for evidence, overlooked during the crisis, that Lia might already have been septic at MCMC. Murmuring to each other in their shared secret language (“calcium 3.2,” “platelets 29,000,” “hemoglobin 8.4”), they might have been—in fact, were—a pair of lovers exchanging a set of emotionally charged intimacies.

“I did too,” said Neil. “If I’d thought she was septic here at MCMC, I would have done a lumbar puncture. I didn’t start her on antibiotics because every single time Lia had come in before that, she was not septic. Every other time, the problem was her seizure disorder, and this was obviously the worst seizure of her life. I stabilized her, I arranged for her transport, and then I went home before all the lab results were back.” He didn’t sound defensive. He sounded curious.

After Neil and Peggy went home, I asked Bill Selvidge whether he thought Neil had made a mistake in not recognizing and treating Lia’s sepsis, even though Dr. Hutchison believed that her fate was probably sealed before she arrived in the MCMC emergency room—and even though the increasing severity of her epilepsy might eventually have led to serious brain damage if sepsis had never entered the picture.

“Neil leaves no stone unturned,” said Bill. “If Neil made a mistake, it’s because every physician makes mistakes. If it had been a brand-new kid walking off the street, I guarantee you Neil would have done a septic workup and he would have caught it. But this was Lia. No one at MCMC would have noticed anything but her seizures. Lia was her seizures.”

To MCMC’s residents, Lia continued to be her seizures—the memory of those terrifying nights in the emergency room that had taught them how to intubate or start IVs or perform venous cutdowns. They always spoke of Lia in the past tense. In fact, Neil and Peggy themselves frequently referred to “Lia’s demise,” or “what may have killed Lia” or “the reason Lia died.” Dr. Hutchison did the same thing. He had asked me, “Was Lia with the foster parents when she died?” And although I reminded him that Lia was alive, five minutes later he said, “Noncompliance had nothing to do with her death.” It wasn’t just absentmindedness. It was an admission of defeat. Lia was dead to her physicians (in a way, for example, that she was never dead to her social workers) because medicine had once made extravagant claims on her behalf and had had to renounce them.

Once I asked Neil if he wished he had done anything differently. He answered as I expected, focusing not on his relationship with the Lees but on his choice of medication. “I wish we’d used Depakene sooner,” he said. “I wish I’d accepted that it would be easier for the family to comply with one medicine instead of three, even if three seemed medically optimal.”

“Oh, no, no, no!” His vehemence surprised me. “Once I might have said yes, but not in retrospect. Lia taught me that when there is a very dense cultural barrier, you do the best you can, and if something happens despite that, you have to be satisfied with little successes instead of total successes. You have to give up total control. That is very hard for me, but I do try. I think Lia made me into a less rigid person.”

The next time I saw Foua, I asked her whether she had learned anything from what had happened. “No,” she said. “I haven’t learned. I just feel confused.” She was feeding Lia at the time, making baby noises as she spooned puréed zaub the spinachlike green she grew in the parking lot, into the slack mouth. “I don’t understand how the doctors can say she is going to be like this for the rest of her life, and yet they can’t fix her. How can they know the future but not know how to change it? I don’t understand that.”

“I don’t know these things,” said Foua. “I am not a doctor. I am not a txiv neeb. But maybe Lia will stay hurt like this, and that makes me cry about what will happen. I gave birth to Lia, so I will always take care of her with all my heart. But when her father and I pass away, who will take care of Lia? Lia’s sisters do love her, but even though they love her, maybe they will not be able to take care of her. Maybe they will need to study too hard and work too hard. I am crying to think that they are just going to give Lia away to the Americans.” Foua wept soundlessly. May Ying embraced her and stroked her hair.

“I know where the Americans put children like Lia,” she continued. “I saw a place like that in Fresno where they took Lia once, a long time ago.” (Foua was recalling a chronic care facility for retarded and disabled children where Lia had been temporarily placed, before her year in foster care, while her medications were monitored and stabilized.) “It was like a house for the dead. The children were so poor and so sad that they just cried. They cried all over. One child had a big head and a really small body. Other children had legs that were all dried up and they just fell on the floor. I have seen this. If the Americans take Lia there she will want to die, but instead she will suffer.”

Foua brushed her tears from her cheeks with the back of her hand, in a quick, brusque gesture. Then she wiped Lia’s mouth, far more gently, and slowly started to rock her. “I am very sad,” she said, “and I think a lot that if we were still in Laos and not in the United States, maybe Lia would never be like this. The doctors are very very knowledgeable, your high doctors, your best doctors, but maybe they made a mistake by giving her the wrong medicine and they made her hurt like this. If it was a dab that made Lia sick like this in Laos, we would know how to go to the forest and get herbs to fix her and maybe she could be able to speak. But this happened here in the United States, and Americans have done this to her, and our medicine cannot fix that.”

It was also true that if the Lees were still in Laos, Lia would probably have died before she was out of her infancy, from a prolonged bout of untreated status epilepticus. American medicine had both preserved her life and compromised it. I was unsure which had hurt her family more.

Since that night with Foua, I have replayed the story over and over again, wondering if anything could have made it turn out differently. Despite Dr. Hutchison’s revisionist emendation of the final chapter, no one could deny that if the Lees had given Lia her anticonvulsants from the beginning, she might have had—might still be having—something approaching a normal life. What was not clear was who, if anyone, should be held accountable. What if Neil had prescribed Depakene earlier? What if, instead of placing Lia in foster care, he had arranged for a visiting nurse to administer her medications? What if he had sought out Blia Yao Moua or Jonas Vangay or another Hmong leader who straddled both cultures, and had asked him to intervene with the Lees, thus transferring the issue of compliance to a less suspect source? What if MCMC had had better interpreters?

When I presented my “what if” list to Dan Murphy one day in the MCMC cafeteria, he was less interested in the Depakene than in the interpreters. However, he believed that the gulf between the Lees and their doctors was unbridgeable, and that nothing could have been done to change the outcome. “Until I met Lia,” he said, “I thought if you had a problem you could always settle it if you just sat and talked long enough. But we could have talked to the Lees until we were blue in the face—we could have sent the Lees to medical school with the world’s greatest translator—and they would still think their way was right and ours was wrong.” Dan slowly stirred his lukewarm cocoa; he had been on all-night call. “Lia’s case ended my idealistic way of looking at the world.”

Was the gulf unbridgeable? I kept returning, obsessively, to the Lees’ earliest encounters with MCMC during Lia’s infancy, when no interpreters were present and her epilepsy was misdiagnosed as pneumonia. Instead of practicing “veterinary medicine,” what if the residents in the emergency room had managed to elicit the Lees’ trust at the outset—or at least managed not to crush it—by finding out what they believed, feared, and hoped? Jeanine Hilt had asked them for their version of the story, but no doctor ever had. Martin Kilgore had tried, but by then it was years too late.

Of course, the Lees’ perspective might have been as unfathomable to the doctors as the doctors’ perspective was to the Lees. Hmong culture, as Blia Yao Moua observed to me, is not Cartesian. Nothing could be more Cartesian than Western medicine. Trying to understand Lia and her family by reading her medical chart (something I spent hundreds of hours doing) was like deconstructing a love sonnet by reducing it to a series of syllogisms. Yet to the residents and pediatricians who had cared for her since she was three months old, there was no guide to Lia’s world except her chart. As each of them struggled to make sense of a set of problems that were not expressible in the language they knew, the chart simply grew longer and longer, until it contained more than 400,000 words. Every one of those words reflected its author’s intelligence, training, and good intentions, but not a single one dealt with the Lees’ perception of their daughter’s illness.

Almost every discussion of cross-cultural medicine that I had ever read quoted a set of eight questions, designed to elicit a patient’s “explanatory model,” which were developed by Arthur Kleinman, a psychiatrist and medical anthropologist who chairs the department of social medicine at Harvard Medical School. The first few times I read these questions they seemed so obvious I hardly noticed them; around the fiftieth time, I began to think that, like many obvious things, they might actually be a work of genius. I recently decided to call Kleinman to tell him how I thought the Lees might have answered his questions after Lia’s earliest seizures, before any medications had been administered, resisted, or blamed, if they had had a good interpreter and had felt sufficiently at ease to tell the truth. To wit:

You should give Lia medicine to take for a week but no longer. After she is well, she should stop taking the medicine. You should not treat her by taking her blood or the fluid from her backbone. Lia should also be treated at home with our Hmong medicines and by sacrificing pigs and chickens. We hope Lia will be healthy, but we are not sure we want her to stop shaking forever because it makes her noble in our culture, and when she grows up she might become a shaman.

I thought Kleinman would consider these responses so bizarre that he would be at a loss for words. (When I had presented this same material, more or less, to Neil and Peggy, they had said, “Mr. and Mrs. Lee thought what?”) But after each answer, he said, with great enthusiasm, “Right!” Nothing surprised him; everything delighted him. From his vantage point, a physician could encounter no more captivating a patient than Lia, no finer a set of parents than the Lees.

“I have three,” he said briskly. “First, get rid of the term ‘compliance.’ It’s a lousy term. It implies moral hegemony. You don’t want a command from a general, you want a colloquy. Second, instead of looking at a model of coercion, look at a model of mediation. Go find a member of the Hmong community, or go find a medical anthropologist, who can help you negotiate. Remember that a stance of mediation, like a divorce proceeding, requires compromise on both sides. Decide what’s critical and be willing to compromise on everything else. Third, you need to understand that as powerful an influence as the culture of the Hmong patient and her family is on this case, the culture of biomedicine is equally powerful. If you can’t see that your own culture has its own set of interests, emotions, and biases, how can you expect to deal successfully with someone else’s culture?”