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

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. …