A pediatrician wonders about NICUs’ hidden cost of success.
I almost fainted during my first visit to a neonatal intensive care unit (NICU). I was a fourth-year medical student. The babies got to me. Some of them were pink, others a bit grayish. Some were in diapers and seemed to be looking around. Others were blindfolded and lying naked under banks of florescent lights. The basinettes of some were wrapped in cellophane. All were connected to machines and monitors—mechanical ventilators, cardiac monitors, intravenous infusion pumps, intra-arterial pressure gauges, temperature sensors. Shameful to say, the babies evoked in me a strange mixture of sympathy and antipathy. Their vulnerability made me want to care for them, protect them. I wanted to join the devoted staff, whose energy, science, and devotion almost created an artificial womb to keep these tiny marvels alive. But there was also something disconcerting about their dependence on the machinery and medical technology—and about their dependence on us.
A Stranger’s Queasiness
Nurses hovered over each basinette. They would occasionally pick up or turn a baby, but mostly, it seemed, they watched the monitors, keeping the buzzers from buzzing and the beepers from beeping. They would periodically measure medications in tiny syringes and inject them not into the babies but into the tubes connected to the babies. At other times they would withdraw tiny amounts of blood. After each glance at a monitor, injection, or blood draw, they would calmly document the events on the graphs and grids of their thick notebooks.
The babies themselves did not seem central, except in a mechanical way, to the dramas being enacted. In that way, though, they were a crucial part of some vastly complex loop, the energy source to which all else was connected. They were clearly the place where the tubes and wires and catheters came together. Oddly, they were not where the eyes of the professionals focused. Instead, the professionals listened to the rhythm of the beeps; they watched the flickering digits on the ventilators and the infusion pumps and the tracings of the electrical activity of the babies’ hearts.
The doctors, nurses, and respiratory therapists talked to one another easily. Their language was the mysterious argot of numbers and abbreviations that technicians every- where use. They’d casually say things like, “This 26-weeker has RDS and a PDA, he’s on a rate of 30, PEEP of 5, 35 percent O2. Neuro: an ultrasound yesterday showed a Grade II. Nutrition: he’s down 300 grams since birth, we’re starting TPN today. Heme: he’s had 3 cc’s out and we’re replacing it. Social: parents haven’t been in.” Right. Sometimes the attending physician would ask a question or two. Other times, not. We’d shuffle en masse a few steps to the next hub. The medical team didn’t talk to the babies or to the parents, who had been asked to leave the unit during rounds. The team talked around and through the babies in a way that made my head spin. I sort of understood what they were talking about. But like a visitor to a foreign country who had studied the language a long time ago, I caught mere snippets that were not enough to piece it all together. I wanted them to slow down, to translate a phrase here and there, to allow me to participate. I began to feel like an intruder, an outsider, an alien. The things that were going on were so unusual, yet everybody seemed determined to pretend that they were normal. I wanted to point this out, but I had no voice. I began to feel a growing desperation.
The reality of the room became distant and indistinct, the voices fuzzier and harder to understand. I could feel my heart pounding and the blood rushing to my face. My palms became sweaty. I silently excused myself from rounds and went to sit on a sofa in the parents’ waiting room, hanging my head between my knees like an exhausted athlete.
It was not a good day. I felt like an idiot. I wondered if I could really do this, if I really wanted to be a doctor. I was scared of what I felt and of what I lacked. I was scared of what I would have to do in the pediatrics residency that I was planning to start.
Over time, I tried to blot out that moment. As a pediatrics resident, I spent many months working competently in the NICU, without swooning again. The episode only came back to me ten years later, when, as a practicing general pediatrician and bio- ethicist, I was writing a paper about ethical issues in the NICU, particularly about the way doctors learn to deal with the stress of difficult moral decisions. I suddenly understood that the inadequacy and doubt that I felt at that moment were not shameful signs of weakness. They were, instead, crucial personal responses to the NICU’s disturbing realities.
The Economics Behind The Miracle
Over time, neonatal intensive care has confronted, clashed with, and in some ways rearranged our consciousness. By developing ways to save the lives of a whole population of babies who once were thought too small to survive, it has changed the way we think about what babies demand from us as a society and about what we owe to them. Neonatal intensive care has changed the way doctors, hospitals, and academic medical centers conceptualize their activities and missions. Partly because of changing patterns of pediatric illness and hospitalization, neonatal care has become the centerpiece of tertiary care pediatrics. Evidence abounds for its powerful effects on how we think about child health care.
Board certification in neonatology began in the 1970s. By 1999 there were twice as many board-certified neonatologists (almost 3,400) as there were board-certified pediatricians in any other specialty. For many years neonatology has dominated the annual meetings of the Pediatric Academic Societies. Studies of neonatologists’ work, of the changing morbidity and mortality rates in NICUs, and of neonatal innovations far outnumber studies of all other aspects of pediatrics combined.
NICUs have become not just the focus of pediatric scholarly work but also the economic lifeblood of academic medical centers. This is because the number of inpatient hospital days accounted for by premature babies has increased dramatically in recent years, while the number of inpatient days for children between the ages of one and fifteen has been falling steadily. Non-NICU pediatric admissions accounted for nearly nine million bed days in 1980, but fewer than six million bed days by 1993. This large drop is attributable largely to improvements in care. More diseases are now preventable, through effective immunization programs, than were twenty years ago. Improved outpatient care of patients with asthma and diabetes and those in need of minor surgery has led to more outpatient care, less inpatient care, and fewer and shorter hospital stays.
Nationally, about 53,000 American babies per year are born with a birthweight of less than three pounds. Overall, at today’s survival rates, these babies will account for 2.1 million bed days. Just a decade ago survival rates for such babies were 30–50 percent lower, and they would have accounted for only 1.6 million bed days. Over this relatively short time period, non-NICU bed days dropped by 30 percent, and NICU bed days rose by at least that amount. It is because of this trend toward shorter inpatient stays for most children and longer inpatient stays for premature babies that NICUs have become the economic engine that keeps children’s hospitals running. The survival of hospital- based pediatrics as we know it is increasingly dependent on the commitment to the technologies and the personnel that enable the survival of extremely premature babies.
NICUs are economically successful because they are medically successful. Through the process of developing NICUs and the knowledge that we have gained, thousands of babies who otherwise would have died not only survive but survive in excellent health. The challenge of incorporating the phenomenal success of neonatology into our understanding of what babyhood is all about and into our self-understanding of what it means to care for the most vulnerable among us has changed the way pediatricians think about them- selves, their specialty, and their mission.
Shifting From Preventive To Intensive Care
Pediatrics was once the quintessentially preventive medical discipline. As an organized political force, pediatricians advocated for a public health model that considered interventions in terms of what was good for all children. The American Academy of Pediatrics was founded in the late 1920s in part to counter the American Medical Association’s opposition to government support for universal access to preventive care for children. Comprehensive preventive services delivered through institutional arrangements called “infant welfare stations” led to decreases in infant mortality rates that were every bit as dramatic as those
achieved by NICUs.
Unlike today’s intensive care services, preventive services don’t behave well as profit-making commodities. In order to lead to cost savings, preventive care needs to be provided to vast numbers of people at low cost and often by unskilled personnel. The cost savings it produces accrue across society rather than to particular providers. Returns on investment take time and are difficult to link directly to any specific intervention. A powerful critique of such programs, then as now, is that universal preventive services threaten prevailing economic structures by implicitly undermining the individualistic view of both providers and consumers of health care. The economic infrastructure of our health care delivery system requires atomizing the provision of health care services into quantifiable entities that can be charged and accounted for discretely. In contrast to preventive care, intensive care maps perfectly onto this economic infrastructure.
One response to this interpretation of why our society seems to value intensive care over preventive care is that we are simply doing what works. Proponents of this view argue that preventive care worked well in the 1920s and 1930s, when high infant mortality was caused primarily by inappropriate feeding practices. Immunizations worked best in the 1950s and 1960s, when infectious diseases were the leading killers of children. In more recent decades, however, those interventions are being maximally used. Neonatal intensive care is the logical next step, the only intervention that, in a post-industrial society, can continue to lower infant mortality.
But is neonatal intensive care the best, the only, or the most cost-effective way to lower infant mortality? Data from here and abroad suggest that some combination of comprehensive social sup- port, preventive health care for women, comprehensive prenatal care, and easy access to family planning services may be far more cost-effective than neonatal intensive care. Of course, in evaluating these data, what we “believe” can affect what we “know,” and the way in which we study the efficacy of neonatal care can color the results. For instance, if we examine the fate of all infants who are born at a low birthweight, NICUs will clearly come out looking quite effective. Another approach is to look not just at what happens to babies born at a given birthweight but at the rate of low birth- weight within a society.
Over the past twenty years, as NICUs have proliferated through- out the industrialized world, rates of preterm labor and low birth- weight have been rising, both at home and abroad. In Sweden the low-birthweight rate rose from 5.5 per 1,000 births between 1973 and 1984 to 6.7 per 1,000 in 1988. In the United States the low-birthweight rate was 7.5 per- cent in 1997, the highest rate since 1974. The rise in these rates, by itself, would lead to an increase in infant mortality unless countered by improvements in neonatal intensive care. Infant mortality rates are dropping in both the United States and Sweden, reflecting a deli- cate balance between the rising rates of premature birth and the effectiveness of neonatal intensive care in lowering birthweight-specific infant mortality.
But why are low-birthweight rates rising? It almost seems as if society, by some mechanism, is working against health to produce more and more low-birthweight babies, and that medicine is then working against society, desperately trying to patch the wounds caused by some nameless thing that is forcing our babies from the womb too soon.
A Value Choice
Perhaps the thing is not so nameless. Premature birth is clearly associated with a number of social and economic factors, including the availability of health care services. In Scandinavian countries, which boast the lowest infant mortality rates in the world and some of the lowest rates of low birthweight, these factors are considered in decisions about how to best target resources to maintain the low rates. In the United States the effects of social factors are well studied and even more dramatic. But we do not see these effects as being amenable to intervention because we don’t use our economic and political creativity to facilitate or re- ward the development of the kinds of systems that might modify these factors. Instead, the social and economic environment is viewed as an immutable background against which clinicians, sci- entists, and hospital administrators work their wonders.
But the political and economic arrangements in which we live have as much effect, or more, on the health of children (and adults) as do the particular clinical interventions we undertake. To a certain extent, neonatal intensive care has become necessary because we have created a society that produces a lot of premature babies. And we have responded marvelously to this problem. We have figured out not only how to develop the science, technology, and pharmacology that will allow us to save babies, but also the financial arrangements that will encourage hospitals to do so. This financial commitment is a sort of moral commitment, but, in that sense, it is also a value choice. We reward one type of response to the moral demand of infant mortality (neonatal care) and not another (preventive care).
NICUs make money only because they implicitly make a compelling moral claim upon society. This claim insists that we not turn our back on these tiny, vulnerable babies. It constructs the NICUs as the epitome of our humanity, the measure of our devotion, the test of our will. NICUs stand for our society’s moral commitment to children, our excellence in caring for them, and even for our moral progress over time in recognizing that our tiniest citizens have rights. In allowing each preemie to make a moral claim upon us, we see ourselves as altruistic and superior to other cultures in other eras that didn’t recognize the common moral humanity of the newborn.
We imagine that we are working to protect premature babies because they need us, but it turns out that preemies are also working for us. They perform an important altruistic function for our medical centers. We are supported by the rewards that doctors and hospitals claim for meeting the obligations that we’ve taken upon ourselves. Pediatrics departments and children’s hospitals are now financially dependent on NICU preemies. At the University of Chicago, for example, over the past three years, the NICU has had the highest revenue-to-expense ratio of any unit in the entire hospital, including both adult and pediatric units. Recognizing this fact, the new University of Chicago Children’s Hospital, like most new children’s hospitals, will have more NICU beds than the current one but will not have room left over for a new emergency department, new out- patient clinics, or an auditorium for public gatherings.
Economic realities influence choices in subtle ways, making certain solutions to certain problems seem preferable to others. I do not believe that individual neonatologists decide whether to continue or stop treatment for a particular baby by calculating the reimbursement for care that they or their hospital will receive. But I am convinced that the economic “vote of confidence” given to neonatal intensive care is quite different from the economic “vote of no confidence” given to outpatient general pediatrics, mental health care, dental care, and programs to prevent injuries. That societal message then gets translated into a system whereby parents are charged with child neglect or even manslaughter for refusing neonatal care for their marginally viable babies. Doctors are sued for withholding treatments for particular preemies. But society itself is absolved of the much larger neglect that allows one- third of our children to grow up in poverty. Such spectacles reflect and create a moral environment that is both odd and compelling.
Neonatal intensive care is one of the triumphs of modern medicine. Babies who inevitably would have died a few decades ago routinely survive today. But the success of NICUs should not lead us to see them as the only solution to infant mortality or as an adequate moral response to our children’s health needs. We should constantly remind ourselves that the need for so much intensive care for so many babies is a sign of political, medical, and moral failure in developing ways to address the problems that sustain an epidemic of prematurity.
Someday, we will understand the physiology of premature labor and come up with ways to prevent it. Without premature babies, NICUs and the moral and political dilemmas they create will be moot. In the meantime, NICUs are necessary to us in many ways. But they shouldn’t control us. In devoting so much expertise and so many resources to neonatal intensive care, we should think clearly about the choices we are making and the choices we are thereby rejecting.
1. How do the arguments and points discussed here apply in a Canadian context?
2. To what extent is an approach to care addressing the result of societal factors better than an approach to addressing the societal factors directly?