The nurse's role in treatment decisionmaking for the child with disabilities.

• Author: Mahon, Margaret M.

As with any profession, nurses have ethical dilemmas in many areas of practice. Some of these are major, and some, perhaps more frequently encountered, are rapidly dealt with and not considered again. Concerning children with disabilities, there is also a range in the magnitude of ethical issues nurses encounter. Initially, most of these dilemmas surround the birth and death of children. Further exploration reveals that there is a wider range across which these dilemmas occur.

For example, various issues arise when a woman who is mentally retarded has four children who are also mentally retarded. In planning for the care of these children, nurses must consider more issues than they do for children without such disabilities. More frequent clinic visits may be scheduled because this mother sometimes misses what might be more obvious to others, such as insufficient weight gain in a child. An intervention may be recommended in which there is more control by health care providers, instead of one with more control by the mother, because the goal is the best treatment for the child.

Another example is the ever increasing number of mothers with drug addiction who have not received prenatal care and come to the hospital for the delivery of their babies. Patients may be rotated so the woman with drug addiction can be put near the nurses' station because past experience demonstrates that these women are more likely to abandon their babies. These newborns themselves may be going through withdrawal. This is indeed a nationwide problem because children abandoned in hospitals or living in foster homes constitute a major portion of the almost half a million children described in the Washington Post as "discarded."(1) The Post article went on to say that this number is expected to increase to 840,000 by 1995.(2)

At this stage in their treatments, scenarios of the four children who are mentally retarded or the abandoned child of an addicted mother do not represent an immediately life-threatening situation. They are not even very dramatic. But both represent the kinds of issues faced daily by nurses caring for children.

The phrase "treatment decisions" brings to mind major interventions, especially the question of whether a child will have surgery. But there is also a range of issues surrounding treatment decisions. Should a child receive pain medication before having a spinal tap, or having chest tubes put in, or before going for a wound debridement in a whirlpool? The effects of decisions like these might be relatively short-lived but are still important to the child. This article will establish categories of treatment decisions and then give some general parameters for decisionmaking.

Treatment Decisions for Newborns

The first major category is decisionmaking for newborns as distinct from other children. The kinds of decisions made about newborns are different from those made about other children for several reasons. First, there is the issue of conflicting emotions. The birth of a baby is most often a joyous and long-awaited event, but the birth of a child either too early or with physical problems, or both, creates a time of emotional upheaval and even ambiguity for some. Second, it seems important to many people that this child is not "known." That is, when one has to make a decision for a one year old, we can talk about what is known about that child, his likes and dislikes, his temperament and likely reactions. With a newborn this unique knowledge of individuality has not yet developed.

When considering newborns, there are three subpopulations with which ethical issues most frequently arise. The President's Commission, in its report entitled Deciding to Forego Life-Sustaining Treatment, listed two: low birth weight infants, and infants with congenital abnormalities.(3) Since that report was issued in 1983, another subpopulation has emerged, or reemerged, as the focus of ethical controversy. These are infants with anencephaly, who lack most or all of their brain.

Issues of Technology

Issues of technology are most frequently those that occur at the premature birth of a very small infant. More and more infants are being saved earlier and smaller as a result of advanced technology. Technology allows both the monitoring of a child's condition before and after birth and an increased ability to intervene to prevent or attempt to cure severe conditions.

There now exists the technology to save, for example, an infant born at twenty-six weeks' gestation, fourteen weeks early, weighing eight hundred grams (or about 1.76 pounds). Care for this baby involves providing assistance in several areas, most importantly the respiratory system. The lungs are not mature enough at twenty-six weeks' gestation to allow unassisted breathing, so the baby is assisted with a ventilator.

So that nutrition and hydration can be given, an intravenous (IV) line is started immediately in the umbilical artery of the umbilical cord. Blood can also be drawn back through this line to assess oxygenation status. Leads are placed in three spots on the infant's chest to monitor the heart rate. Another lead is placed so that oxygenation can be assessed through the skin.

To conserve strength, the infant is likely to be paralyzed with medications. Hopefully, there is adequate pain management. Within a few days it is likely that the child will develop jaundice and need to have phototherapy to assist in the breakdown of the excess red blood cells that cause jaundice. Patches must be placed over the eyes to prevent damage from these lights.

Everything that has been described thus far is likely to happen to an infant who is premature but otherwise healthy. It is usually devastating for parents to sell all that has been done to (albeit for) their infant. The role of the nurse at this point is to allow the parents to see their baby among all the wires, tubes, and monitors. Teaching and technology go hand in hand.

Forty to sixty percent of infants born at less than thirty-four weeks' gestation or weighing less than fifteen hundred grams will have an intraventricular hemorrhage(4) (IVH), which is a bleeding into and around the ventricles, that is, the fluid filled cavities on the inside of the brain. IVHs happen without warning, usually in the first few hours or days of life. An IVH can be mild, or it can be very severe, resulting in permanent and debilitating brain damage or even death.

Premature babies are usually very sick and often so for a very long time. Some of them recover completely, and some of them never do. The nature of working in neonatal intensive care is commitment to the best possible life for these tiny children with the least amount of damage. But when crises occur, as they frequently do, this care is coupled with rapid, usually very "high-tech" intervention. A complicating factor is that the interventions themselves can cause severe damage. For example, excess oxygen can cause retrolental fibroplasia (RLF), a type of blindness.

For some children there comes a time when families, nurses, physicians, and all the others involved in this intensive care ask: "Is this enough?" or "Is it time to stop?" for each intervention is not without cost to the infant. These questions are not asked because of the discomfort of having a tube placed into the tiny lungs to suction frequently, or because of the pain of starting IVs, perhaps having to stick the child repeatedly due to inability to find an accessible vein. Nor is it because of all of the other every day and every hour things that are done. These treatment discomforts are not usually what causes the questions because the benefits of these treatments are most often clear-cut.

Sometimes, however, the babies are just too sick to survive. The issue then becomes that of allowing a good death. Those who work in the nursery can often tell when the death of a baby is imminent. The role of the nurse at this time is twofold: maximizing the baby's comfort and allowing the family to participate to the extent that they want as the child dies. Some neonatal nurses have a goal that every baby who dies will do so feeling loved. As the baby is dying, he or she is held, preferably by a family member--if not, then by a nurse--in a rocking chair, wrapped in a soft blanket, perhaps with its hand around its mother's finger.

And in another part of the intensive care nursery the phone rings. A hospital wants to transfer in a baby who has just been born at twenty-six weeks' gestation weighing eight hundred grams. The nurse who will be taking this next baby assembles the monitors, IVs, drugs, and paperwork that will be necessary to care for it.

Issues of Treatment of Congenital Conditions

The issue of treatment of congenital conditions is the second major area concerning the care of newborns. It is the most involved and perhaps the most volatile. The interventions discussed here are usually surgical. A major difference between issues of prematurity and issues of treatment is the time factor. When a premature baby is born, decisions about intervention are made in a matter of seconds. When a newborn has a condition that requires surgery, there may be hours or even days to decide on the course of treatment--or nontreatment, as the issue presents itself. At this juncture an historical review of medical cases and court decisions lays an essential foundation.

In 1973 two physicians at Yale-New Haven hospital published a review of some practice and experience of their institution.(5) Duff and Campbell reported that over a thirty month period, there were 299 deaths in their special care nursery. In this two-and-a-half year period forty-three babies, or 14%, died because of a decision either to withhold or discontinue treatment. Those infants whose treatments were withheld included babies with multiple anomalies, spina bifida, and trisomies.(6)

Duff and Campbell and those with whom they worked were certainly not the first to be...