Authors: Jerome Groopman
"I really like him as my doctor," the neighbor told me, "but for the first time in all these years he sat at his desk with one eye on the clock and one eye on the computer screen, only occasionally turning his head to look at me."
Electronic technology can help organize vast clinical information and make it more accessible, but it can also drive a wedge between doctor and patient when used in this way to increase "efficiency." It also risks more cognitive errors, because the doctor's mind is set on filling in the blanks on the template. He is less likely to engage in open-ended questioning, and may be deterred from focusing on data that do not fit on the template.
Eric Cassell expands on the danger that clinical care is being squeezed by the efficiencies of the marketplace: "In healthcare planning, it is natural that each service might be seen as a commodity or product. The calculus involved in determining the cost of providing the service, the factors affecting reimbursement, the required number of such services, and other factors all promote the commodity view ... Medical care—in all of medicine, not just primary care—is a human interaction between patient and doctor within a context and in a social system. As such it is not a commodity."
Every aspect of medicine can be challenging, but, like Cassell, I have come to believe that the most difficult type of doctoring is primary care. Although there are complex decisions that specialists like myself make, we usually know what underlying problem we are addressing. Similarly, in surgery, while there are important nuances in both approach and technique, once he has begun an operation, a competent surgeon can pursue the abnormalities he sees. Again, the problems are largely apparent. On the other hand, as Victoria Rogers McEvoy said, practicing primary care is like trying to find that one distinct face in the passing train. The difficulty is all the greater, research shows, because nearly all of the complaints patients describe to their primary care physician, such as headache, indigestion, and muscle pain, are of no serious consequence.
And now insurers are packing the trains with so many passengers it feels like standing room only. Delivering high-quality care day after day to hundreds, if not thousands, is no easy feat. Currently, the bean counters are generating metrics to judge a physician's "quality," but many of these are trivial, simply scorecards to ensure that the blood sugar was measured and a flu shot given. "Quality" in primary care means much more. It means thinking broadly, because any and every problem of human biology can present itself; it means making judicious decisions with limited data about children and adults, neither overreacting nor being blasé it means wielding one's words with precision and with a profound appreciation of the social context of the patients. It means, as a gatekeeper, knowing where to guide us. One of those portals opens to the intensive care unit.
Chapter 5
A New Mother's Challenge
T
HE FLIGHT FROM VIETNAM
to Los Angeles seemed endless. Rachel Stein held Shira, her infant daughter adopted just days before in Phu Tho, on her lap, but neither slept. The infant had a cough and refused to take even a few sips from the bottle. Rachel walked up and down the narrow aisles, rocking Shira and singing in an effort to calm her enough to drink and then sleep. But the playful notes of Rachel's favorite Cole Porter tunes were of no comfort.
Rachel Stein originally had set her sights on business: she got an MBA and quickly climbed the corporate ladder in finance. But in her early thirties, when she had reached a high rung, she stalled. A sense of emptiness weighed her down. Every time she thought about the next step, she felt she lacked the energy and balance to reach it. So instead of looking up, Rachel looked back. And what she saw she didn't like at all.
Business, Rachel concluded, was daily conflict. The single measure of success was money. Rachel wanted her life to be grounded in something else. She came from a family that did not observe many traditions, but did encourage personal prayer. For months, Rachel questioned God about what to do with her life. Then she realized the answer was the conversation itself. She would study religious concepts and commandments, and seek to live a life in which generosity and caring were paramount. She quit the boardroom for the classroom.
Rachel entered a seminary, and over time her faith took form. She emerged an ordained rabbi, but realized that the pulpit was not for her. Instead, she became a manager at an institution of higher Jewish learning and applied her financial skills to its success.
As Rachel approached fifty, she felt another void in her life. Her pursuit of God, she realized, had left her little opportunity to pursue marriage and family. She was an attractive woman with jetblack hair and deep-set amber eyes. But in the congregation where she prayed and the institution where she worked, there were few single men of her age. After much thought, she decided to adopt a child and build a family as a single mother. Women like Rachel face formidable difficulties in adopting newborns. Agencies typically seek two-parent families. Moreover, since most birth mothers are themselves unmarried, they reject the idea of another single woman receiving their baby. Only two countries readily allow assignment of infants to middle-aged single women: Vietnam and Guatemala.
In January 2001, Rachel completed the detailed supporting documents and sent them to Vietnam. The agency in the United States coordinating her application said that her "assignment" might come in March or April. But these months passed without a response, and her spirits began to sag. Then, in early June, she was informed that a baby girl, born on April 26 in the town of Phu Tho, some fifty miles north of Hanoi, was available.
Rachel was eager to learn more about the child. The American agency cautioned that getting information usually took many weeks, but within a few days a small folder arrived. In it was some information about the baby, Hoang Thi Ha, and a photograph. The infant had a nest of black hair and high cheekbones, and she looked robust and content. Rachel was told to plan a trip to Vietnam in September, when the child would be six months old. But in July, out of the blue, she got word that she should be in Hanoi in two weeks. Although the Vietnamese authorities had not yet finished processing the last of the paperwork, the orphanage wanted Rachel to come anyway. Rachel flew first to Los Angeles, joined up with her sister-in-law, and then both traveled to Taipei and finally Hanoi.
It was a mercilessly hot morning when Rachel emerged from the plane. Veils of thick vapor cloaked the tarmac. Rachel was met by an agency representative in a small white Peugeot who drove her into the city. Along the streets, vendors cooked fish and vegetables in large woks, and laborers in conical hats carried loads on bamboo poles balanced across their shoulders. As the car entered downtown Hanoi, it was surrounded by hundreds of people on bicycles on their way to work. Rachel thought of herself as a pebble carried in a fast-flowing stream to its destiny.
Although prospective parents usually rested upon arrival, Rachel's adrenaline would not let her relax. She had to meet her daughter. The orphanage was housed in a low white concrete building set back from a dusty road. Six to eight metal-frame cots filled each room. The green-painted walls were cracking, and the linoleum floors were worn. But, Rachel observed, the surfaces were clean, and the women attending the children treated them with care.
A woman in white nurse's garb pointed to a baby with spindly limbs in one of the cots. "Ha," the nurse said. Rachel was unsure what she meant. The baby was thin and didn't, at first glance, resemble the infant in the photo. "Ha?" Rachel replied. The nurse picked up the child. "Ha," she said again, and pressed the baby to Rachel.
Rachel held the child. For three years she had imagined this moment with tingling anticipation. But the expected joy did not appear. Rather, she found herself distracted by the lingering impression that the baby she was holding didn't quite resemble the one in the photograph. And the infant was congested, coughing as she rocked her in her arms. Rachel was reassured by the staff that this was the same child originally assigned to her, and that runny noses were the norm in the orphanage.
The next day, Rachel returned, picked up the baby, took her back to the hotel, and began to prepare for the trip north to Phu Tho. There, along with several other prospective parents, a formal meeting with local government officials would occur, culminating in the signing of the adoption papers. The event was called "the ceremony for entrusting the child to the adoptive parents." Rachel placed the infant on the hotel bed to dress her for the ceremony. As she took her thin arm and guided it into the sleeve, the soft touch seemed to radiate through her. Rachel slowly lifted the baby and pressed her against her breast. She could feel the rapid fluttering of the infant's heart against her own. Tears flowed freely from her eyes. Rachel loved music, especially song. Her baby's intended name, Shira, meant "song" in Hebrew. Rachel sang in her rich alto voice a Psalm of thanksgiving, a song to God.
Phu Tho was some two hours' drive north of Hanoi. Along the way, peasants harvested rice in paddies and yoked oxen pulled crude plows through rocky fields. In the distance were high mountains thick with vegetation.
The mayor of Phu Tho was a middle-aged man in a white shirt and gray slacks. He said that the children of Vietnam were a national treasure, precious and to be guarded. These treasures were now being shared with people who had pledged to preserve them. After the ceremony, it typically took three weeks to complete the adoption process. But the officials in Phu Tho told Rachel they were expediting her paperwork. She and Shira left four days later.
By the time they landed, Rachel worried that Shira might be dehydrated. She had family in Los Angeles, and so got off there to take the baby to a local doctor. The doctor agreed Shira was sick, but a chest x-ray was clear; an antibiotic was prescribed for presumed sinusitis. Rachel, reassured, arrived in Boston on Monday evening, July 30. During the six-hour trip from Los Angeles, Shira took only two ounces of formula.
Rachel was spent from the journey. Shortly after putting the baby to sleep, she collapsed in her bed. On awakening the next day, the first thing Rachel did was to try to get Shira to drink. But hours of coaxing were useless. Rachel's sister in California, a pediatrician, called in the early evening to check on the baby. "She's at risk for dehydration. You have to take her to an emergency room." So, as midnight approached, with nothing more than a diaper bag, Rachel took Shira to Boston's Children's Hospital, assuming she would be given fluids in the ER and they would soon return home.
The Children's Hospital ER has a triage system that rapidly directs the sickest children, like trauma victims, into examining or procedure rooms. The less sick, those with ear infections, diarrhea, and other common problems, sit in a waiting area while the urgent cases are seen. Rachel sat with Shira for five hours before they were called. A young resident looked at Shira's eyes, ears, and throat, listened to her chest, palpated her belly. He then drew blood for tests and ordered a chest x-ray.
Two hours later, the results were in. The resident began by explaining that Shira's fontanelle, the soft spot at the crown of an infant's skull where the bones have not yet fused, was sunken, a sure sign of dehydration. But, he said gravely, the cause was more than simple sinus congestion. Shira's mouth was covered with fungus, and although this sometimes happened as the result of taking the antibiotic started in Los Angeles, it also could be a sign of an immune deficiency.
Rachel's stomach tightened as the young doctor gave her more bad news: an x-ray showed pneumonia involving both lungs. "First we'll put an IV in, to give fluids. Once she gets hydrated, maybe she'll perk up."
Rachel stood in numb silence. A nurse held Shira down on the examining table as the resident began to thread a thin needle into a vein. But within seconds, the infant's face turned dusky and her skin mottled. The resident's eyes widened with alarm.
"She's de-tuning," he said to the nurse.
All at once, a frenzy of activity engulfed the child. Blood was drawn, a mask fitted over her face, and a large ambu bag attached to the mask to force air into her lungs. "Her pressure is falling. Give her a bolus of IV fluid," the resident ordered.
Rachel didn't know what a "bolus" was, or what "de-tuning" meant, or why holding down her baby for a few seconds had precipitated a crisis. Another nurse soon entered the room with the results from the blood tests. "Her O2 saturation is seventy," she said.
The resident explained to Rachel that Shira's pneumonia was so severe that it was preventing her from getting enough oxygen to cope with even the most minor stress, like fussing while being held. "She needs to be in the ICU."
Rachel felt as if she were on one of those amusement park rides that spins you around in circles, turns you upside down, then flings you to the edge of the rail so your eyes blur, your stomach heaves, and your mind goes blank. "I ... I ... don't understand..."
The resident placed the chest x-ray on the light box attached to the wall. "This is the heart," he said, tracing a white shape in the center of the chest that looked like a giant teardrop. "Around the heart are the lungs. They should be black on the x-ray, because normally they are filled with air and the x-ray beam passes through." Rachel looked at the lungs. They were almost as opaque as the heart. She felt her throat tightening. "Instead, the lungs are what we call 'ground glass' in appearance." Rachel wasn't sure whether the lungs resembled ground glass or a snowstorm. What she needed to know was what it meant for her baby.
"We'll cover her broadly with multiple antibiotics and add an antifungal agent because of what we found in her mouth," the resident said. "And for now, we'll give her oxygen via prongs that fit in her nose."
"What could it be?" Rachel asked.
"It could be anything," the resident replied. "Something common, like a virus, or something unusual, from Vietnam."