by Robert Coles
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:
1. What do you call the problem?
Qang dab peg. That means the spirit catches you and you fall down.
2. What do you think has caused the problem?
Soul loss.
3. Why do you think it started when it did?
Lia’s sister Yer slammed the door and Lia’s soul was frightened out of her body.
4. What do you think the sickness does? How does it work?
It makes Lia shake and fall down. It works because a spirit called a dab is catching her.
5. How severe is the sickness? Will it have a short or long course?
Why are you asking us those questions? If you are a good doctor, you should know the answers yourself.
6. What kind of treatment do you think the patient should receive? What are the most important results you hope she receives from this treatment?
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.
7. What are the chief problems the sickness has caused?
It has made us sad to see Lia hurt, and it has made us angry at Yer.
8. What do you fear most about the sickness?
That Lia’s soul will never return.
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.
Then I told him what had happened later—the Lees’ noncompliance with Lia’s anticonvulsant regimen, the foster home, the neurological catastrophe—and asked him if he had any retroactive suggestions for her pediatricians.
“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?”
Wendell Berry
HEALTH IS MEMBERSHIP
Farmer, novelist, poet, and essayist Wendell Berry writes about the time his brother John had a heart attack and was rushed to the hospital, and his reflections on medicine as his brother underwent treatment. “In the hospital,” Berry notes, “what I will call the world of love meets the world of efficiency—the world, that is, of specialization, machinery, and abstract procedure.” The essay questions why these two worlds come together but do not meet.
WENDELL BERRY has been called “America’s Tolstoy” by the Boston Globe. Berry is the author of more than thirty books, including The Gift of Good Land, Home Economics, and What Are People For? This essay is taken from a collection of essays titled Another Turn of the Crank.
On January 3, 1994, my brother John had a severe heart attack while he was out by himself on his farm, moving a feed trough. He managed to get to the house and telephone a friend, who sent the emergency rescue squad.
The rescue squad and the emergency room staff at a local hospital certainly saved my brother’s life. He was later moved to a hospital in Louisville, where a surgeon performed a double-bypass operation on his heart. After three weeks John returned home. He still has a life to live and work to do. He has been restored to himself and to the world.
He and those who love him have a considerable debt to the medical industry, as represented by two hospitals, several doctors and nurses, many drugs and many machines. This is a debt that I cheerfully acknowledge. But I am obliged to say also that my experience of the hospital during John’s stay was troubled by much conflict of feeling and a good many unresolved questions, and I know that I am not alone in this.
In the hospital what I will call the world of love meets the world of efficiency—the world, that is, of specialization, machinery, and abstract procedure. Or, rather, I should say that these two worlds come together in the hospital but do not meet. During those weeks when John was in the hospital, it seemed to me that he had come from the world of love and that the family members, neighbors, and friends who at various times
were there with him came there to represent that world and to preserve his connection with it. It seemed to me that the hospital was another kind of world altogether....
Like divine love, earthly love seeks plenitude; it longs for the full membership to be present and to be joined. Unlike divine love, earthly love does not have the power, the knowledge, or the will to achieve what it longs for. The story of human love on this earth is a story by which this love reveals and even validates itself by its failures to be complete and comprehensive and effective enough. When this love enters a hospital, it brings with it a terrifying history of defeat, but it comes nevertheless confident of itself, for its existence and the power of its longing have been proved over and over again even by its defeat. In the face of illness, the threat of death, and death itself, it insists unabashedly on its own presence, understanding by its persistence through defeat that it is superior to whatever happens.
The world of efficiency ignores both loves, earthly and divine, because by definition it must reduce experience to computation, particularity to abstraction, and mystery to a small comprehensibility. Efficiency, in our present sense of the word, allies itself inevitably with machinery, as Neil Postman demonstrates in his useful book, Technopoly. “Machines,” he says, “eliminate complexity, doubt, and ambiguity. They work swiftly, they are standardized, and they provide us with numbers that you can see and calculate with.” To reason, the advantages are obvious, and probably no reasonable person would wish to reject them out of hand.
And yet love obstinately answers that no loved one is standardized. A body, love insists, is neither a spirit nor a machine; it is not a picture, a diagram, a chart, a graph, an anatomy; it is not an explanation; it is not a law. It is precisely and uniquely what it is. It belongs to the world of love, which is a world of living creatures, natural orders and cycles, many small, fragile lights in the dark.
In dealing with problems of agriculture, I had thought much about the difference between creatures and machines. But I had never so clearly understood and felt that difference as when John was in recovery after his heart surgery, when he was attached to many machines and was dependent for breath on a respirator. It was impossible then not to see that the breathing of a machine, like all machine work, is unvarying, an oblivious regularity, whereas the breathing of a creature is ever changing, exquisitely responsive to events both inside and outside the body, to thoughts and emotions. A machine makes breaths as a machine makes buttons, all the same, but every breath of a creature is itself a creature, like no other, inestimably precious.
Logically, in plenitude some things ought to be expendable. Industrial economics has always believed this: abundance justifies waste. This is one of the dominant superstitions of American history—and of the history of colonialism everywhere. Expendability is also an assumption of the world of efficiency, which is why that world deals so compulsively in percentages of efficacy and safety.
But this sort of logic is absolutely alien to the world of love. To the claim that a certain drug or procedure would save 99 percent of all cancer patients or that a certain pollutant would be safe for 99 percent of a population, love, unembarrassed, would respond, “What about the one percent?”
There is nothing rational or perhaps even defensible about this, but it is nonetheless one of the strongest strands of our religious tradition—it is probably the most essential strand—according to which a shepherd, owning a hundred sheep and having lost one, does not say, “I have saved 99 percent of my sheep,” but rather, “I have lost one,” and he goes and searches for the one. And if the sheep in that parable may seem to be only a metaphor, then go on to the Gospel of Luke, where the principle is flatly set forth again and where the sparrows stand not for human beings but for all creatures: “Are not five sparrows sold for two farthings, and not one of them is forgotten before God?” And John Donne had in mind a sort of equation and not a mere metaphor when he wrote, “If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend’s or of thine own were. Any man’s death diminishes me.”
It is reassuring to see ecology moving toward a similar idea of the order of things. If an ecosystem loses one of its native species, we now know that we cannot speak of it as itself minus one species. An ecosystem minus one species is a different ecosystem. Just so, each of us is made by—or, one might better say, made as—a set of unique associations with unique persons, places, and things. The world of love does not admit the principle of the interchangeability of parts.
When John was in intensive care after his surgery, his wife, Carol, was standing by his bed, grieving and afraid. Wanting to reassure her, the nurse said, “Nothing is happening to him that doesn’t happen to everybody.”
And Carol replied, “I’m not everybody’s wife.”
In the world of love, things separated by efficiency and specialization strive to come back together. And yet love must confront death, and accept it, and learn from it. Only in confronting death can earthly love learn its true extent, its immortality. Any definition of health that is not silly must include death. The world of love includes death, suffers it, and triumphs over it. The world of efficiency is defeated by death; at death, all its instruments and procedures stop. The world of love continues, and of this grief is the proof.
In the hospital, love cannot forget death. But like love, death is in the hospital but not of it. Like love, fear and grief feel out of place in the hospital. How could they be included in its efficient procedures and mechanisms? Where a clear, small order is fervently maintained, fear and grief bring the threat of large disorder.
And so these two incompatible worlds might also be designated by the terms “amateur” and “professional”—amateur, in the literal sense of lover, one who participates for love; and professional in the modern sense of one who performs highly specialized or technical procedures for pay. The amateur is excluded from the professional “field.”
For the amateur, in the hospital or in almost any other encounter with the medical industry, the overriding experience is that of being excluded from knowledge—of being unable, in other words, to make or participate in anything resembling an “informed decision.” Of course, whether doctors make informed decisions in the hospital is a matter of debate. For in the hospital even the professionals are involved in experience; experimentation has been left far behind. Experience, as all amateurs know, is not predictable, and in experience there are no replications or “controls”; there is nothing with which to compare the result. Once one decision has been made, we have destroyed the opportunity to know what would have happened if another decision had been made. That is to say that medicine is an exact science until applied; application involves intuition, a sense of probability, “gut feeling,” guesswork, and error.
In medicine, as in many modern disciplines, the amateur is divided from the professional by perhaps unbridgeable differences of knowledge and of language. An “informed decision” is really not even imaginable for most medical patients and their families, who have no competent understanding of either the patient’s illness or the recommended medical or surgical procedure. Moreover, patients and their families are not likely to know the doctor, the surgeon, or any of the other people on whom the patient’s life will depend. In the hospital, amateurs are more than likely to be proceeding entirely upon faith—and this is a peculiar and scary faith, for it must be placed not in a god but in mere people, mere procedures, mere chemicals, and mere machines.
It was only after my brother had been taken into surgery, I think, that the family understood the extremity of this deed of faith. We had decided—or John had decided and we had concurred—on the basis of the best advice available. But once he was separated from us, we felt the burden of our ignorance. We had not known what we were doing, and one of our difficulties now was the feeling that we had utterly given him up to what we did not know. John himself spoke out of this sense of abandonment and helplessness in the
intensive care unit, when he said, “I don’t know what they’re going to do to me or for me or with me.”
As we waited and reports came at long intervals from the operating room, other realizations followed. We realized that under the circumstances, we could not be told the truth. We would not know, ever, the worries and surprises that came to the surgeon during his work. We would not know the critical moments or the fears. If the surgeon did any part of his work ineptly or made a mistake, we would not know it. We realized, moreover, that if we were told the truth, we would have no way of knowing that the truth was what it was.
We realized that when the emissaries from the operating room assured us that everything was “normal” or “routine,” they were referring to the procedure and not the patient. Even as amateurs—perhaps because we were amateurs—we knew that what was happening was not normal or routine for John or for us.
That these two worlds are so radically divided does not mean that people cannot cross between them. I do not know how an amateur can cross over into the professional world; that does not seem very probable. But that professional people can cross back into the amateur world, I know from much evidence. During John’s stay in the hospital there were many moments in which doctors and nurses—especially nurses!—allowed or caused the professional relationship to become a meeting between two human beings, and these moments were invariably moving.