154
BIRTH 19:3 September 1992
Roundtable: Survival and Outcome of the Extremely Low-Birthweight Infant
Tiny Babies-Enormous
Costs
Niger Paneth, MD, MPH Technology is a snowball rolling downhill-much easier to start than to stop, and much easier to stop early than to stop late. A baby is born in Rochester, New York, weighing 12 ounces and showing good initial adaptation to extrauterine life (Apgar scores 7 and 9). A decision is made to admit to intensive care, initiate 35 percent oxygen by hood, and administer intravenous fluids. Admission to intensive care? Where else place an apparently thriving tiny infant? Oxygen by hood? Easy to do. Intravenous fluids? In today’s world, a low-level technology. I will not cavil by asking how long it took to find that millimeter-wide vein. But admission to intensive care and starting an intravenous line are both risk factors for the coagulase-negative staphylococcal sepsis that ensued, and that led to endotracheal intubation, mechanical ventilation, necrotizing enterocolitis, cholestatic liver disease, thrombocytopenia, more staphylococcal sepsis, Enterohacter abscess, rickets, possible hearing loss, and growth failure. The infant went home at age 7 months with bronchopulmonary dysplasia severe enough to require nasal oxygen, albuterol, furosemide, and theophylline. We do not know how she will do in school. Down the slippery slope the snowball rolls. An alternative, which would have been chosen by many neonatologists, particularly in Europe (l), would have been a warm isolette, a lambswool comforter, a quiet environment, and dim lights. Survival would have been unlikely; death would have been peaceful. The authors are kind enough not to tell us the price of this intensive care, but the average cost of care nationally for an infant weighing less than 1 kg was over $100,000 in 1987 (2) (more costly than a
Nigel Paneth is Director of the Program in Epidemioiogy, Coilege of Human Medicine, Michigan State University, East Lansing, Michigan.
heart transplant), and this particular infant’s charges could now easily exceed a quarter of a million dollars. The cost of caring for a severely handicapped child is even greater, more than $22,000 per year in 1982 dollars, or as much as a million dollars in a lifetime (3). The description of the family suggests that much of the hospital costs were borne by the public, and that additional public costs are currently entailed for the continued care of both mother and infant. Yes, we can, with today’s technology, occasionally save infants of this weight and gestational age, but the outlook for surviving infants who weigh less than 750 g at birth is grim indeed, even if costs are not factored in. The largest group among them will die, and the next largest will experience considerable morbidity after hospital discharge. They will have high rates of respiratory illness in early life, and will do less well than expected in school. A substantial minority will have handicaps severe enough to interfere with learning, ambulation, and communication, many of which will cost the public dearly. Only a minority will have the health and well-being of the average child in our society. Rare though tiny infants are-only 0.6% of all are now live births weigh less than 1000 g (4)-they surviving in such large numbers that they are surely contributing to increased rates of handicap in the childhood community. Using vital data, I ascertained that in 1983, 59 times as many infants who had weighed less than 1 kg at birth survived to 1 month than in 1960 (5). Our states should be budgeting now for the increased costs of caring for the extra handicapped infants who must inevitably ensue from these trends in survival. Two forces have recently become allied in the effort to save tiny infants at all costs. The one is the implacable march of technology, implemented by dedicated neonatologists who simply refuse to consider that there might be instances where implementation of available techniques is just not a very good idea.
BIRTH 19:3 September 1992
155
The other force, equally single-minded, is the antiabortion movement, which has, with substantial government support, cast its blinkered eyes on our nurseries and decreed that failure to resuscitate, to intubate, and to ventilate are all moral crimes, virtually no matter the circumstances. The convergence of these forces has now been noted in U.S. infant mortality rates. Many more infants under 500 g are now labeled as live births (rather than stillbirths). Since they almost all die (which is why the case report by Sherer et al is publishable), they now count in the infant mortality rate. It has been shown that one-half of the recent slowdown in infant mortality is due to the inclusion of deaths to live births under 500 g who, in the past, would never have made it to live-birth status (6). A decade ago my colleagues and I showed that survival for infants between 501 and 2250 g was significantly better at hospitals with hightechnology neonatal services (7). This finding, which has been replicated several times (8-lo), served as support for the development and dissemination of newborn intensive care. Yet it is often forgotten that the largest differences in mortality we found were in low-birthweight infants weighing over 1500 g. Indeed, national data confirm that moderately low-birthweight infants have experienced enormous improvements in survival, have relatively low rates of long-term handicap, and almost all will be as healthy as their normal-birthweight neighbors and classmates. Neonatology has done an extraordinary service to the nation by virtually ensuring the survival, and generally the intact survival, of these infants, who usually are born between 28 and 34 weeks of gestation. In failing publicly to acknowledge the limitations of its technology at lower gestational ages and birthweights (in private this is done all the time), the discipline of neonatology vitiates its accomplishments and loses support for its very real achievements. Individual neonatologists have often spoken eloquently for the need for the prudent and com-
passionate withholding of treatment in the very immature infant (11). Surely it is now time for national organizations of neonatologists to gather together and set a threshhold of birthweight and gestational age below which ordinarily (there may be individual exceptions) it is inadvisable to apply the technology of newborn intensive care. References 1. Young EWD, Stevenson KD. Limiting treatment for extremely premature low-birth-weight infants (500 to 750 g). Am J Dis Child 1990;144:549-552. 2. U.S. Congress, Office of Technology Assessment. Neonatal Intensive Care f o r Low Birthweight Infants: Costs and Effectiveness. OTA-HCS-38. Washington, DC: Author, 1987. 3. U.S. Congress, Office of Technology Assessment. Healthy Children: Investing in the Future. OTA-H344. Washington, DC: Author, 1988. 4. U.S. Department of Health and Human Services, National Center for Health Statistics. Monthly Vital Statistics Report 1991;40(8, suppl). 5 . Paneth N. Neonatal care and patterns of handicap in the community. In: Chard T, Richards MPM, eds. Benefits and Hazards o f the New Obstetrics f o r the '90s. London: MacKeith Press, 1992. 6. Kleinman JC. The slowdown in the infant mortality decline. Paediatr Perinat Epidemiol 1990;4:379-407. 7. Paneth N, Kiely JL, Wallenstein SW, et al. Newborn intensive care and neonatal mortality in low birthweight infants: A population study. N Engl J Med 1982;307:149-155. 8. Gortmaker S, Sobol A, Clark C, et al. The survival of very low birthweight infants by level of hospital of birth: A population study of perinatal systems in four states. Am J Obstet Gynecol 1985;152:517-524. 9. Verloove-Vanhorick SP, Venvey RA, Ebeling MCA. Mortality in very preterm and very low birthweight infants according to place of birth and level of care. Pediatrics 1988; 8 1:40U11, 10. Mayfield JA, Rosenblatt RA, Baldwin LM, et al. The relationship of obstetrical volume and nursery level to perinatal mortality. Am J Public Health 1990;80:819-823. 11. Campbell AGM. Which infants should not receive intensive care? Arch Dis Child 198237569-571.
The Problem of Probable Outcome Jeanne Guillemin, PhD This case of the survival of an infant born weighing 345 g raises the most difficult problem facing every clinician with critically ill patients-how to interpret the myriad clinical studies about a given course Jeanne Guillemin is Professor, Department of Sociotogy, Boston College, Boston, Massachusetts.
of treatment so as best to counsel the parents or guardians. The rates of mortality and morbidity are there in print; how does one achieve humane, reasonable, and disinterested interpretation of those facts? The problem of answering the question of probable outcome is by no means limited to newborn intensive care. Every day, physicians must represent the benefits and hazards of
BIRTH 19:3 September 1992
Roundtable: Survival and Outcome of the Extremely Low-Birthweight Infant
Tiny Babies-Enormous
Costs
Niger Paneth, MD, MPH Technology is a snowball rolling downhill-much easier to start than to stop, and much easier to stop early than to stop late. A baby is born in Rochester, New York, weighing 12 ounces and showing good initial adaptation to extrauterine life (Apgar scores 7 and 9). A decision is made to admit to intensive care, initiate 35 percent oxygen by hood, and administer intravenous fluids. Admission to intensive care? Where else place an apparently thriving tiny infant? Oxygen by hood? Easy to do. Intravenous fluids? In today’s world, a low-level technology. I will not cavil by asking how long it took to find that millimeter-wide vein. But admission to intensive care and starting an intravenous line are both risk factors for the coagulase-negative staphylococcal sepsis that ensued, and that led to endotracheal intubation, mechanical ventilation, necrotizing enterocolitis, cholestatic liver disease, thrombocytopenia, more staphylococcal sepsis, Enterohacter abscess, rickets, possible hearing loss, and growth failure. The infant went home at age 7 months with bronchopulmonary dysplasia severe enough to require nasal oxygen, albuterol, furosemide, and theophylline. We do not know how she will do in school. Down the slippery slope the snowball rolls. An alternative, which would have been chosen by many neonatologists, particularly in Europe (l), would have been a warm isolette, a lambswool comforter, a quiet environment, and dim lights. Survival would have been unlikely; death would have been peaceful. The authors are kind enough not to tell us the price of this intensive care, but the average cost of care nationally for an infant weighing less than 1 kg was over $100,000 in 1987 (2) (more costly than a
Nigel Paneth is Director of the Program in Epidemioiogy, Coilege of Human Medicine, Michigan State University, East Lansing, Michigan.
heart transplant), and this particular infant’s charges could now easily exceed a quarter of a million dollars. The cost of caring for a severely handicapped child is even greater, more than $22,000 per year in 1982 dollars, or as much as a million dollars in a lifetime (3). The description of the family suggests that much of the hospital costs were borne by the public, and that additional public costs are currently entailed for the continued care of both mother and infant. Yes, we can, with today’s technology, occasionally save infants of this weight and gestational age, but the outlook for surviving infants who weigh less than 750 g at birth is grim indeed, even if costs are not factored in. The largest group among them will die, and the next largest will experience considerable morbidity after hospital discharge. They will have high rates of respiratory illness in early life, and will do less well than expected in school. A substantial minority will have handicaps severe enough to interfere with learning, ambulation, and communication, many of which will cost the public dearly. Only a minority will have the health and well-being of the average child in our society. Rare though tiny infants are-only 0.6% of all are now live births weigh less than 1000 g (4)-they surviving in such large numbers that they are surely contributing to increased rates of handicap in the childhood community. Using vital data, I ascertained that in 1983, 59 times as many infants who had weighed less than 1 kg at birth survived to 1 month than in 1960 (5). Our states should be budgeting now for the increased costs of caring for the extra handicapped infants who must inevitably ensue from these trends in survival. Two forces have recently become allied in the effort to save tiny infants at all costs. The one is the implacable march of technology, implemented by dedicated neonatologists who simply refuse to consider that there might be instances where implementation of available techniques is just not a very good idea.
BIRTH 19:3 September 1992
155
The other force, equally single-minded, is the antiabortion movement, which has, with substantial government support, cast its blinkered eyes on our nurseries and decreed that failure to resuscitate, to intubate, and to ventilate are all moral crimes, virtually no matter the circumstances. The convergence of these forces has now been noted in U.S. infant mortality rates. Many more infants under 500 g are now labeled as live births (rather than stillbirths). Since they almost all die (which is why the case report by Sherer et al is publishable), they now count in the infant mortality rate. It has been shown that one-half of the recent slowdown in infant mortality is due to the inclusion of deaths to live births under 500 g who, in the past, would never have made it to live-birth status (6). A decade ago my colleagues and I showed that survival for infants between 501 and 2250 g was significantly better at hospitals with hightechnology neonatal services (7). This finding, which has been replicated several times (8-lo), served as support for the development and dissemination of newborn intensive care. Yet it is often forgotten that the largest differences in mortality we found were in low-birthweight infants weighing over 1500 g. Indeed, national data confirm that moderately low-birthweight infants have experienced enormous improvements in survival, have relatively low rates of long-term handicap, and almost all will be as healthy as their normal-birthweight neighbors and classmates. Neonatology has done an extraordinary service to the nation by virtually ensuring the survival, and generally the intact survival, of these infants, who usually are born between 28 and 34 weeks of gestation. In failing publicly to acknowledge the limitations of its technology at lower gestational ages and birthweights (in private this is done all the time), the discipline of neonatology vitiates its accomplishments and loses support for its very real achievements. Individual neonatologists have often spoken eloquently for the need for the prudent and com-
passionate withholding of treatment in the very immature infant (11). Surely it is now time for national organizations of neonatologists to gather together and set a threshhold of birthweight and gestational age below which ordinarily (there may be individual exceptions) it is inadvisable to apply the technology of newborn intensive care. References 1. Young EWD, Stevenson KD. Limiting treatment for extremely premature low-birth-weight infants (500 to 750 g). Am J Dis Child 1990;144:549-552. 2. U.S. Congress, Office of Technology Assessment. Neonatal Intensive Care f o r Low Birthweight Infants: Costs and Effectiveness. OTA-HCS-38. Washington, DC: Author, 1987. 3. U.S. Congress, Office of Technology Assessment. Healthy Children: Investing in the Future. OTA-H344. Washington, DC: Author, 1988. 4. U.S. Department of Health and Human Services, National Center for Health Statistics. Monthly Vital Statistics Report 1991;40(8, suppl). 5 . Paneth N. Neonatal care and patterns of handicap in the community. In: Chard T, Richards MPM, eds. Benefits and Hazards o f the New Obstetrics f o r the '90s. London: MacKeith Press, 1992. 6. Kleinman JC. The slowdown in the infant mortality decline. Paediatr Perinat Epidemiol 1990;4:379-407. 7. Paneth N, Kiely JL, Wallenstein SW, et al. Newborn intensive care and neonatal mortality in low birthweight infants: A population study. N Engl J Med 1982;307:149-155. 8. Gortmaker S, Sobol A, Clark C, et al. The survival of very low birthweight infants by level of hospital of birth: A population study of perinatal systems in four states. Am J Obstet Gynecol 1985;152:517-524. 9. Verloove-Vanhorick SP, Venvey RA, Ebeling MCA. Mortality in very preterm and very low birthweight infants according to place of birth and level of care. Pediatrics 1988; 8 1:40U11, 10. Mayfield JA, Rosenblatt RA, Baldwin LM, et al. The relationship of obstetrical volume and nursery level to perinatal mortality. Am J Public Health 1990;80:819-823. 11. Campbell AGM. Which infants should not receive intensive care? Arch Dis Child 198237569-571.
The Problem of Probable Outcome Jeanne Guillemin, PhD This case of the survival of an infant born weighing 345 g raises the most difficult problem facing every clinician with critically ill patients-how to interpret the myriad clinical studies about a given course Jeanne Guillemin is Professor, Department of Sociotogy, Boston College, Boston, Massachusetts.
of treatment so as best to counsel the parents or guardians. The rates of mortality and morbidity are there in print; how does one achieve humane, reasonable, and disinterested interpretation of those facts? The problem of answering the question of probable outcome is by no means limited to newborn intensive care. Every day, physicians must represent the benefits and hazards of
