Professor Arthur I. Eidelman, M.D.
Director, Neonatal Intensive Care
Shaare Zedek Medical Center
Ethical Aspects in Neonatology
I wish to begin with a few basic definitions. Neonatology is the study of the neonate, i.e. newborn medicine. The truth of the matter is that today we care not only for the newborn infant, but also for the fetus before birth. This is reflected in the joke that the incubators that we use in our nurseries are just “wombs with a view.”
Let me add some historical perspective by illustrating the treatments of the premature infant in the not too distant past. The first slide is a picture of the “Baby Incubator” building at the St. Louis World’s Fair of 1904.
In reality, this was the first newborn intensive care unit in the United States. As you can see, this building was not located in a hospital, but rather a “side show” at a World’s Fair reflecting the low order of priority that the medical system placed on the care of the newborn.
The next slide shows the rows of incubators lined up for the curious visitors who paid 25 cents to view these wonders (“freaks?”).
For reference, the third slide shows a picture of the first incubator which was designed in the 1880’s in Paris. This design remained the standard until some 20 years ago reflecting the lack of technological improvement in this field until recently.
In contrast, as the fourth slide shows, today’s care entails the use of a variety of highly sophisticated equipment in specially designed modern intensive care units housed, as expected, in hospitals such as Shaare Zedek which are committed to giving the utmost care and the best chance to the newborn.
However, given this commitment one must realize the dilemmas that we inevitably face. The previous speaker, Professor Ornoy, in his discussion of the medical indications for the termination of pregnancy, defined a “high risk” situation as one wherein there is 10% or more chance that the fetus has been damaged by some teratogenic process. To many this degree of risk justifies the recommendation of “termination.” To a neonatologist like myself this definition is problematic and challenging, for how can one condone termination because of a 10% risk of damage, while we initiate and continue care for a newborn premature infant who is at risk for neurological damage and poor functional outcome.
Again, to gain historical perspective let us review the mortality and morbidity statistics of such very low birth weight infants, i.e. those born weighing less than 1.5 kilogram.
In the 1960’s, 70% of these infants died. By the 1980’s survival increased to 75% and in this decade it is over 85%. Of these who survived some 10% have a severe neurological handicap and another 6-7% have mild to moderate damage.
If we review the group that is born weighing less than a kilo we note that the survival rate has increased from 10% in the 1960’s to over 50%. In the 1960’s only 20% of those who survived were normal, today we expect that 75% will be normal, surely a dramatic improvement. However, if one does some quick calculation one realizes that given the increased number of survivors our success has led to a higher absolute number of damaged infants surviving. What has led to this dramatic improvement in survival rate?
As we know, the most important determinant of survival of the premature infant is its respiratory condition. Research has proven that what is critically missing in the immature lung is a special lipid that is called surfactant as illustrated in slide 7.
This material lines the inner part of the lung to prevent collapse and facilitates gas exchange, i.e. oxygen in and carbon dioxide out. Today this missing material can either be produced synthetically or derived from animal lungs. By injecting it directly to the infants lungs we can halve the mortality from respiratory immaturity.
The next series of slides summarizes the dramatic decrease in mortality in all weight groups since surfactant has become available.
When you convert these statistics to gestational age, i.e. the number of weeks after conception, the improvement is even more striking indicating survival after only 22-23 weeks of pregnancy and a survival rate of over 50% when we pass the 26th week. Although these data are from the United States, the Israeli national data are quite comparable. Yes, infants born up to 4 months early survive and this is not considered a miracle!
The survival of such infants has forced us to create a new term. To remind you a low birth weight infant is one who is born weighing less than 2.5 kilogram, a very low birth weight weighs less than 1.5 kilo and weighing less than 1.0 kilo are termed very very low birth weight. What does one call a premature infant who is born weighing less than 750 grams? A micropremie! What can we expect from such micropremies who survive? Herein is the ultimate dilemma for the statistics. The percentage of damaged children, the number of retarded infants or the degree of cerebral palsy will not be known until many years of follow up have taken place.
On the other hand, the data we have today regarding survival reflect the results of our treatment some 5-6 years ago, surely not reflecting the current state of the art as we are in a dynamically changing specialty. But, having no alternative, let us at least see what can be expected of micropremie survivors born 5 years ago. Again for such results we must turn to statistics from North America.
The surviving infants were assessed by a battery of neurological, mental and cognitive tests and were given a composite score based on all these tests which summarized their functional status. As a group, the micropremies had a mean score of 70 (normal is 100). 20% suffered from significant functional disorders and half (10%) of this group had severe brain damage. 45% needed special education classes because of learning disorders. This surely reflects a very problematic population. Thus even though it is clear that we have improved survival dramatically with the use of respirators and surfactant, there is much to be done to improve the quality of the survivors and to minimize the number of survivors who will have chronic neurological problems as noted above. What is of concern is that given our state of knowledge it is not clear if this outcome of brain damage is an inevitable result of severe prematurity or reflects the still less than ideal care for these very fragile and sick newborns.
Yes, there is a “price” for keeping such micropremies alive. And yes, we can calculate the actual cost in dollars.
In the United States the figure ranges from $25,000-500,000 per infant. In Israel, given the different salary scale, it may only be $10,000-300,000, but our reimbursement is so much less. As such, as Professor Halevy correctly reminds me, the care of such infants is an economic cost of major proportion and generates a major operating deficit for the hospital; and the outcome is not always favorable!
I wish to end my presentation by summarizing the resulting questions that emerge from this review of where we stand in the care of the small sick premature infant, questions that our rabbinic colleagues must address:
1. Is there a given gestational age, week of pregnancy or birth weight that obliges me to initiate treatment even though I know that the risk of brain damage is over 10%? To remind you abortion committees routinely recommend termination when the risk is of such a magnitude.
2. Is there a week in pregnancy or a birth weight below which I need not begin treatment as the survival rate is so low. Is that cut off mortality rate 50%, 70% or only when it nears 100%?
3. If an infant is respirator dependent and one cannot anticipate that he/she will ultimately survive, can I disconnect the infant from the respirator so as to end suffering? Can I withdraw therapy?
Finally, I wish to raise an additional problem that I will not illustrate with any slides given its delicacy and complexity. The situation is real and relates to a full term infant who was recently born at Shaare Zedek. Shortly after birth the infant was diagnosed as suffering from a severe congenital cyanotic cardiac defect.
While in theory the defect could be fully corrected by surgery, to date the success of immediate surgery for full correction is less than 15%. As such the recommendation is to perform what is called palliative surgery, i.e. a partial correction, in the hope that at some later date a more definitive procedure could be performed.
Recently, a new surgical procedure for complete correction has been developed in some centers in the United States with success rate approaching 90%! To date this new operation has not been performed in Israel with any great degree of success. Given these facts, wherein lies my obligation? As the personal physician of this infant, it is clear that I should recommend travel to the United States. On the other hand, as a senior physician involved in the development of national services for the newborn, it is possible that my obligation is to advise that the procedure be performed here in Israel in order to enable Israeli surgeons to gain the necessary experience so that in the long run they can be as successful as their American colleagues. How does one resolve this conflict of interests and ethical dilemma? Again, I turn to my rabbinical colleagues for guidance.