Neonates with problems can be divided into three groups. A first group includes those who have an excellent prognosis right from the beginning. This group includes the “garden variety” preemie who weighs two pounds or more and who is born without any problem other than prematurity. Most everyone in the field of neonatology would agree that everything possible should be done to support these infants.
A second group is made up of those infants who are born with such severe defects that survival is not possible no matter what is done for them. Included in this group are babies with anencephaly, a condition in which the skull and brain fail to develop; all of these infants are either stillborn or die within the first days of life. Also included in this group are babies born before twenty-four weeks of pregnancy. Most but not all neonatologists feel that these infants should be made as comfortable as possible and be allowed to die without intervention.
The third group of infants with problems is the most difficult ethically. It is made up of those children who fit between these two extremes: babies born weighing less than two pounds but above the twenty-fourth-week-of-pregnancy cutoff; and infants with major birth defects that are not necessarily lethal. The medical community is divided about what to do with these babies. Many neonatologists would do everything possible to offer these infants the opportunity to survive, knowing that possibly for every surviver who turns out to be normal, there’ll be an infant or two who will wind up significantly damaged. Others would provide limited care, reasoning that the “strong” will survive and the “weak” will die off (the problem with this reasoning is that some in the former group who would have led a normal existence had aggressive care been provided will wind up damaged as a result of this method). Finally, some would argue that nothing should be done for this middle group and that nature should be allowed to take its course; physicians who think this way are clearly in the minority.
In neonatology, there’s a tendency to lose sight of the end point. Sometimes a neonatologist who understands that he or she has the tools to keep any newborn alive for as long as he or she wants, may decide to flex his or her technological muscles and play God, keeping alive children who should be allowed to die. Neonatologists might argue that these exercises are good in the long run: By learning about keeping these children alive even for a brief period today, it might someday be possible for some to survive. And there might be some truth to this; after all, the argument that nothing should be done could have been made twenty years ago concerning babies who weighed twice what the babies who survive today weigh. But the question is, What price is being paid for this?
During his month in the NICU, Mark was kept awake night after night caring for babies some of whom he considered brain dead, one of whom weighed only a little over seventeen ounces. Discouraged because of all the inevitable deaths, he asked, “What possible good am I doing here?” It didn’t seem as if many of the babies were benefiting from the intensive care. The parents, who were seeing everything done for their infants, were being given false hope; they reasoned, “If they’re doing so much, they must believe that my baby has a chance to survive.” This winds up making coping much more difficult for the parents when the baby ultimately does die.
Taking care of patients who have no chance of surviving is extremely frustrating and anxiety-provoking. You’re asked to do things that don’t make sense to you; you’re called upon to counsel parents without having the picture clear in your own mind. But this state of mind is not limited to working in the NICU. These problems also occur in other intensive-care units.
Physicians working in ICUs that care for older patients must deal with many of the same issues as the neonatologist, but the situations are often radically different. Patients in the pediatric or adult intensive-care units are not neonates; they come into the unit with a life history. They have relatives and friends who know them and love them, not just for what they might be in the future but also for what they’ve been in the past. They have personalities and desires, and often specific requests about what should and should not be done. The intensivist must often decide whether to honor these requests, or the requests made by the patient’s loved ones, or to do whatever he or she thinks is in the patient’s best interests. And that can be very difficult.
During his month in the pediatric intensive-care unit, Andy became involved with three patients for whom “do not resuscitate” orders were ultimately written. Actual orders stating that a specific patient should not be resuscitated in the event of a cardiac or respiratory arrest are new at Mount Scopus Hospital. Prior to the time that the present interns began their year, plans for patients who had no chance of survival were formulated through conversations among the physicians, the family, and, if possible, the patient. If it was agreed by all parties that resuscitation should not be attempted, the word would be passed to all members of the care team. The concept of a patient being a “no code” developed; then the concept of a limited or “slow code” (the situation in which cardiac arrest leads to limited efforts at resuscitation) evolved. Verbal “no codes” were troublesome; to many members of the care team, it seemed like a sham. Notes and orders were being written in the patient’s chart that did not truly reflect the thoughts of the care providers or the wishes of the patient and his or her family. But DNR orders could not be written; they raised legal and ethical questions that had not yet been answered.