Compassion or Opportunism?

I am the parent of a disabled ex-premature child and unwilling to go through the preemie experience again. When I recently became pregnant, we approached the doctors to ask about our options if I went into very early labor. ”Doctors would feel bad,“ we were told, ”if they didn’t do everything possible to save a 24–25 weeker.“ What kind of twisted version of compassion is that? How about the awful feelings of parents required to care for a disabled child for a lifetime?”“I’ve put in 16 years of caregiving—there is no letup in sight, and I’m damn sick of ”them“ telling the world that what I’m doing is not a representation of what is really happening to preemies and their families.”—2 parents.*When I was a pediatric house officer in the 1940s, obstetricians ruled imperiously in delivery rooms. I was told: “We don’t attempt to save newborns weighing <1 kg because they are previable.” In academic institutions on both coasts of the United States, I saw this dictum conducted in actual practice. A neonate weighing <1 kg was unwrapped and placed in a cold corner of the delivery room and ignored until the infant stopped breathing. The agonal gasping seemed endless, much to the discomfort of everyone in the room, but no one made a move to interfere or even question the rule. Parental consent was not solicited; the marginally viable newborn was baptized by the nurse, and the outcome was recorded as “stillborn.” There was much head-shaking, but, as delivery room personnel conceded, “it was just as well.”How did this widely accepted, discriminatory approach change so dramatically in the mid-1950s? After untold centuries of a highly selective practice, why was a mandatory policy of rescue established? Why was every newborn showing the faintest signs of life now actively resuscitated? I suggest that the shift in attitude and in action was part of a wave of optimism following enormous victories in medicine after World War II. The arrival of antibiotics, immunization programs, corticosteroids, and other “miracle” drugs ushered in a brave new interventionist world.I can remember when obstetric residents in the Sloane Hospital for Women at Columbia University were required to enroll in Paluel J. Flagg’s famous course on infant resuscitation: He taught use of the Flagg infant laryngoscope, clearing of the airway, tracheal intubation, and positive-pressure ventilation. Additionally, there was a Kreiselman resuscitation bed (using positive pressure by mask) in every delivery room. However, active tactics were rolled out only for full-term infants who were outwardly normal. I saw the first example of the change in practice in 1951, when a very energetic anesthesiologist, named Virginia Apgar, first came into the delivery rooms of the Sloane Hospital. She was a very effective teacher who taught activism by example. “No one ever stops breathing on me!” she told her nurse-anesthetist pupils, and she opened her purse to show that she always carried a scalpel and tracheotomy tube—ready for any emergency.Virginia Apgar was horrified when she encountered the practice of allowing marginally viable neonates to die with no effort made at rescue. She lost no time in launching a vigorous campaign to change the culture of the delivery room. In 1952, she introduced an ordinal scoring system to document and categorize the status of all newborn infants at 1 minute of age. As I wrote more than 10 years ago,1 the new format did away with the fiction of labeling marginally viable infants as “stillborn.” Her enthusiastic teaching of mandatory resuscitation was very successful. The Apgar Score was adopted widely after she published the scheme in 1953.2When Virginia Apgar left Columbia to become medical director of the March of Dimes, her successor carried on the activist tradition. The incident I remember best took place shortly after the new chief of obstetric anesthesia arrived. He was in the delivery room when an extremely small infant was born during the 23rd week of gestation and weighed ∼500 g. This minute infant was apneic and pulseless. The anesthetist asked for a scalpel, he opened the chest with one stroke, he began to squeeze the heart directly and he yelled for someone to intubate the infant immediately.Before this, no one ever dreamt of using open-chest cardiac massage for the resuscitation of a neonate. Needless to say, this dramatic intercession had an electrifying effect on the crowd of open-mouthed young people in the delivery room. This was a very loud signal indicating how far resuscitative efforts were now prepared to go. The fact that this infant died a few hours later was dismissed as an irrelevant detail.In the 1960s, interest in infants at the edge of viability began to grow dramatically, and newly minted neonatologists became self-appointed guardians of the rights of borderline neonates; the new privileges trumped the competing rights of family and community. Technical improvements progressed spectacularly; “with the skills we have developed,” one zealous team exulted,3 “[we] can bring a peach back from death.” This blinkered focus has resulted in a fall of neonatal mortality rates to lows that are now unprecedented in all of human history, and neonatal intensive care has expanded into an enormous industry. A recent survey by the Agency for Healthcare Research and Quality4 found that “the total national bill for… prematurity is estimated at $11.9 billion in [the year] 2000.” These charges (converting the charges to actual costs would reduce this amount by roughly one-half) are for acute hospital care; they “do not reflect physician and other professional fees.” Neonatal intensive care units have become “profit centers”; one unit accounted for half the total yield of the entire academic medical center, “not just peds but the whole place—a total gain of $10 million” (J. Lantos, written communication, 2003).It strains credulity to believe that opportunistic‡ considerations are having no influence on decisions made to rescue extremely small or severely malformed neonates in the United States. Moreover, the survey by Lorenz et al6 (comparing outcomes after near-universal initiation of intensive care for extreme prematurity in New Jersey with a selective-management policy in The Netherlands) suggests that increased survival of infants at the edge of viability is associated with huge social costs. The American aggressive policy was coupled with a fivefold increase in frequency of disabling cerebral palsy and its attendant life-long impacts on families and communities.The time has come, I suggest, for a formal national inquiry to address an important question: Has opportunism overwhelmed compassion in the American neonatal intensive care industry?I am grateful for data and the opinions provided by Eva Brodkin, Jay P. Goldsmith, Jeffrey B. Gould, Helen Harrison, Jeffrey D. Horbar, Bruce Johnson, John Lantos, Marie C. McCormick, Gerald B. Merenstein, Richard A. Molteni, Miranda Mugford, Stavros Petrou, Ciaran S. Phibbs, Jeannette Rogowski, Rebecca Russell, Hope C. Ryan, Karen D. Thompson, Jon E. Tyson, Brian Wallstin, and Teresa Wolding. None of these valued consultants should be held responsible in any way for the interpretations I have made from the data and opinions they provided so generously. I am sorry to report that a number of knowledgeable others refused to respond to my request for information.