158

tension of aggressive treatment can best be charac- terized as “premature.”

References

1.

2.

3.

4.

5 .

6.

7.

Hack M, Breslau N, Weissman B, Aram D, Klein N, Bo- rawski E. Effect of very low birth weight and subnormal head size on cognitive abilities at school age. N Engl J Med

Den Ouden L, Rijken M, Brand R, Verloove-Vanhorick SP, Ruys JH. Is it correct to correct? Developmental mile- stones in 555 “normal” preterm infants compared with term infants. J Pediatr 1991 ;118:399404. Collin MF, Halsey CL, Anderson CL. Emerging develop- mental sequelae in the “normal” extremely low birth weight infant. Pediatrics 1991;88:115-120. Bennett FC. Neurodevelopmental outcome in low-birth- weight infants: The role of developmental intervention. In: Guthrie RD, ed. Neonatal Intensive Care. New York: Churchill Livingstone, 1988:221-249. Escobar GJ, Littenberg B, Pettiti DB. Outcome among sur- viving very low birth weight infants: A meta-analysis. Arch Dis Child 1991;65:204-211. Hack M, Fanaroff AA. Outcomes of extremely low-birth- weight infants between 1982 and 1988. N Engl J Med 1989; 32 1 : 1642-1 647. Hoffman EL, Bennett FC. Birth weight less than 800

1991 ;325:231-237.

Neonatologists Versus New

8.

9.

10.

11.

12.

13.

14.

15. 16.

17.

BIRTH 19:3 September 1992

grams: Changing outcomes and influences of gender and gestation number. Pediatrics 1990;86:27-34. Lipper EG, Ross GS, Auld PAM, Glassman MB. Survival and outcome of infants weighing <800 grams at birth. Am J Obstet Gynecol 1990;163:146-150. Young EWD, Stevenson DK. Limiting treatment for ex- tremely premature, low-birth-weight infants (500 to 750 g). A m J Dis Child 1990;144:549-552. Mueller MJ. Extreme prematurity: Whose benefits, whose burdens? Centerpiece 1991 ;Dec:2. Rosenthal E. As more tiny infants live, choices and burden grow. New York Times, Sept 29, 1991. Kolata G. Parents of tiny infants find care choices are not theirs. New York Times, Sept 30, 1991. Harrison H. Commentary on the special report “Changes in the delivery room care of the extremely small infant (<750 9): Effects on morbidity and outcome” by Hack and Fanaroff, N Engl J Med 1986;314:660-464. In: Klaus M, Fanaroff A, eds. Yearbook of Perinatal and Neonatal Med- icine. Chicago: Year Book, 1987. Castellano C. And do they all live happily ever after? The ethics of “saving” extremely premature infants. Maternity Action 1992;MarlApr:6-7. Halpern S. Miracle baby. Ms 1989;Sept 8, 56-64. Ginsberg HG, Goldsmith JP, Stedman CM. Survival of a 380-g infant [letter]. N Engl J Med 1990;322:1753. Cone TE. Survival of a one-pound female infant born in 1847. Pediatrics 1980;66:253.

the Rest-The Need for Rules

Neil Campbell, MB, SS, FRACP

This paper reports survival without serious handi- caps of a 345 g infant. It points out that ultra-low birthweight by itself does not make survival pros- pects hopeless if a baby is relatively “mature.” The baby’s survival is discussed within the context of the debate about whether there is a birthweight or gestational age below which babies should not be treated. The implication appears to be that the cri- terion for whether or not tiny babies should be treated is whether or not they are capable of sur- vival without serious handicap.

The outcome in this case is a living child, clearly capable of loving and being loved. We should cele- brate her survival and congratulate her health care team. But things could have turned out differently. At birth, rather than surviving, she had a greater chance of dying after hours, days, or weeks of ar-

Neil Campbell is Director of Neonatology, Royal Children’s Hospital, Melbourne, Victoria, Australia

duous, distressing treatments. She might also have survived with severe handicaps (1). In addition her care must have consumed at least $150,000 and thousands of hours of skilled human effort (2). Since health resources are finite, this means that the life chances of others have been correspondingly reduced.

So factors other than viability must be consid- ered in the care of extremely small babies. The chances of survival for some babies must be weighed against the harms we do to others (and their families) when they die after hours, days, or weeks of intrusive, distressing treatments, or sur- vive with severe handicaps. Economic costs must also be considered, since the massive resources consumed in tiny baby care are no longer available to others.

Costs of care increase exponentially with de- creasing gestational ages below 26 weeks (3). Cost per survivor at 24 weeks (in Australia in 1986) ex- ceeds $250,000 (4). Research to prevent prematu- rity, better preventative antenatal care, and im-

BIRTH 19:3 September 1992 159

proved health care of minorities, families in pov- erty, and the elderly-all are diminished by the increasing resources spent on marginally viable ex- tremely small babies. Beyond these immediate out- comes, resources spent on health are thus not avail- able for education, urban environments, safer roads, and foreign aid. A third of the world’s chil- dren remain hungry, and millions still die of easily preventable diseases.

Costs will continue to increase in many areas of neonatology. Although expensive technologies have burgeoned in the 1980s, we are probably still in the early phase of cost escalation. For example, as extracorporeal membrane oxygenation (ECMO, i.e., heart and lung bypass) technology is refined, it will be applicable to earlier gestations, and for longer periods. Combinations of ECMO, hemofil- tration, and parented nutrition-for lung immatu- rity, severe sepsis, and artificial placentation-will eventually extend below 23 weeks’ gestation (the present ‘‘limit of viability”). Advances will be made in fetal surgery, and in neonatal organ transplanta- tion, possibly using organs from other species. There will be new diseases and new complications. As yet unimagined technologies wait in the wings.

How do neonatologists justify ethically the care of marginally viable babies? Most of us would say that such babies have the same rights to life’s re- wards as any other human, and neonatologists have a particular duty to protect those rights. Many other forms of language express the same basic ideas. More personally, at the bedside, we see them, we enjoy them, and we yearn for them to live.

But, to affirm the rights of tiny babies, we deny the rights of many other people, equally deserving, since we divert such disproportionate resources from their needs. Our behavior toward others in need contradicts our ethical justification of the care of the marginally viable.

We can argue that we do not bear anything like this direct responsibility toward the needs of others, and we do not really determine treatment policies and costs-we are only the servants of our ethical duties, parents, and the law. But this is only partly true. In the ways neonatologists lead and encourage their fellow health workers and parents, in the ways we advocate our subspecialty to hospital manage- ments, governments, and the media, and in the types of research we choose and pursue, we truly set the agenda of modern high-technology newborn care. If we decide something will be attempted- lower birthweights, new technologies, new drug regimens-it will proceed: if we decide against it, it will not. Neonatologists are, first of all, leaders, enthusiasts, and optimists, and rightly so.

Neonatologists must advocate limits to care where benefits are marginal or in doubt, where sub- stantial risks of death are present despite long ar- duous treatments, where quality of life with sur- vival will be poor, and where costs are out of pro- portion and escalating. This will mean limiting care

in a wide range of clinical situations, not just the care of extremely tiny babies. Where tiny babies are concerned, “viability” cannot be the sole determi- nant of Iimits, since it will continue to be pushed to earlier gestations at ever-increasing cost. Limits must be set soon. The moral issues will not change. Costs will not diminish.

Limits have many problems. There are no abso- lute or entirely objective criteria upon which they can be based: setting limits means some babies will die who could otherwise have survived with good quality of life. Practicing within limits is often against the law-for example, when it involves withholding or withdrawing treatment. Neonatolo- gists should lead in advocating law reform.

At the bedside the moral justification for setting limits is the reduction in harms we do to babies (and their families) who do not survive despite arduous and distressing treatment, or survive with severe handicaps. The global justification for limits is the return of scarce health resources to areas where they will achieve more good.

Neonatology has been described as evolving through three historical stages. In the first stage there is no high technology, and more importantly, no formal organization and integration of health worker education, antenatal care, and obstetric and newborn services (that is, all those educational and organizational matters contained within the concept of regionalization). Stage I is characterized by a high perinatal mortality, but relatively low serious morbidity (since few very ill babies survive).

Stage I1 sees the introduction of new technolo- gies, and the beginnings of regionalization. Mortal- ity falls quickly as a result of the new technologies. But because the skills and experience of health workers, and the organization and integration of services, always lag behind new technological ca- pabilities , serious morbidity rises-many more ba- bies are saved, but with handicaps, especially iat- rogenic ones.

In stage 111, regionalization is achieved. Orga- nized, skilled, and experienced health workers with sophisticated educational programs, drugs, and technologies, introduced through controlled trials, reduce mortality and morbidity to (almost) irreduc- ible minima. Most advanced countries believe they are in, or approaching, stage 111.

It has become clear, however, that modern neo- natology will have to mature into a fourth stage. This is because firstly, no nation (nor the world) can afford stage 111, and secondly, even with the best stage 111, there will always be bad outcomes- babies who inevitably die, but after a short life of pain and distress, and babies who survive with se- vere handicaps or invalidism.

In stage IV, limits will be set. Some technologies will be used more selectively. New technologies will not always be introduced. Treatment will be withheld when the chances of intact survival are low. Results of these policies will include a modest

160 BIRTH 19:3 September 1992

rise in mortality, significant reductions in handi- capped survivors, and containment of costs to just levels. Because of prognostic imprecision, some ba- bies will die who might otherwise have survived. Many others will be saved from useless suffering.

The most important result will be that neonatol- ogy will have come of age-compassion and justice will have replaced the technological imperative.

Notes and References

1. It is impossible to state her prospects for survival and hand- icaps: her gestation was 26 weeks and her size that of a

fetus around 22 weeks. It is reasonable to say her prospects were better than babies of 22 weeks’ gestation, but not as good as other babies at 26 weeks. References 8-1 1 in the paper are of little help in predicting for this baby.

2. The baby in reference 12 of the paper was 25 weeks’ ges- tation, 380 g birthweight, hospitalized 122 days (vs. 200+ days in the present case) and cost $202,000. Thus $150,000 for the present case is most likely an underestimate.

3. Doyle LW, Murton LJ, Kitchen WH. Increasing the sur- vival of extremely immature (24- to 28-weeks’ gestation) infants-at what cost? Med J Aust 1989;150:558-568.

4. Doyle LW, Murton LJ, Kitchen WH. Escalating consump- tion of nursery resources by extremely immature infants. Ausi NZ I Obsiet Gynaecol 1987;27:201-204.

Reply to Editorial Comments

Charles E. Mercier, M D

The report by Sherer et a1 on the survival of an infant with a birthweight of 345 g raises issues of ethics and decision making in neonatal care, namely, who should survive, at what cost, and how to decide when outcomes are uncertain. The issues are discussed by distinguished authors in invited commentaries after the article, and are the subject of this response.

The current accepted definition of viability is a birthweight of 500 g (1,2). In general, neither peri- natologists nor neonatologists at our institution would seek to intervene in a pregnancy in which the fetus was, by best estimates, less than 25 weeks or under 500 g, or both. Indeed, when the mother of this infant was admitted to the hospital at 24.5 weeks’ gestation for exacerbation of her hyperten- sion, she was prescribed strict bedrest, dosages of her medications were increased, and no special fetal monitoring was performed. She was informed by the perinatal staff that no infant less than 500 g had survived in this institution. She continued bedrest, with incremental adjustments in her drug therapy for the next week. Perinatal and neonatal staff met with the parents to discuss the potential of interven- tion. At approximately 25.5 weeks, with parental consent, betamethasone was administered to the mother in an effort to hasten fetal lung maturity. At 25% weeks a fetal ultrasound scan indicated an es- timated fetal weight of 467 g. The mother’s hyper- tension remained difficult to control. At 26V7 weeks, with fetal distress and probable eminent fetal death in utero, the mother chose to undergo a cesarean section, “to give the baby any chance, no matter how small. ” Once delivered, this 26-week, small- for-gestational-age infant had stable vital signs and a normal respiratory rate. Respecting the parents’

wishes, the decision was made to support her as a viable infant.

Predicting the child’s ultimate neurodevelopmen- tal outcome remained uncertain during her hospital- ization. In part, this is due to small numbers of in- fants studied and in part to the rapidly changing practice of neonatology. Conclusions about the out- come of an infant born in 1992 that are based on follow-up studies of infants born eight years earlier may not be valid because the clinical care of these infants is so different between the two study periods (3).

Even if we are willing to overlook this issue, present research suggests the contribution of intra- uterine growth retardation to poor outcome is vari- able. In the study by Hack et a1 (4), in which sub- normal head circumference at 8 months of age was associated with poor cognitive function, academic achievement, and behavior at 8 years of age, only eight children, or 24% of the study population, at 8 months of age were born with intrauterine growth retardation. Furthermore, after controlling for so- cioeconomic disadvantage, neonatal risk score, and neurologic impairment, intrauterine growth failure and birthweight had almost no effect on neurode- velopmental outcome (4). Thus, a priori, intrauter- ine growth retardation and birthweight of them- selves may not be associated with poor outcome.

The lack of effect of low birthweight on develop- mental outcome is further supported by Resnick et a1 (5 ) . They compared the educational outcomes of neonatal intensive care unit survivors born 1975 through 1983 with those of newborn nursery infants by evaluating placement in four academic catego- ries: regular classroom, academic problems, speechllanguage impairment, and major impair-