Clinical ethics in the NICU, unlike clinical ethics in most other contexts, does not consider the values, preferences, or wishes of the patient. The neonatal patient is unable to participate in decisions. Parents have the legal right to make decisions for their child, but only if those decisions are judged by doctors or (if challenged) judges to be reasonable decisions in the circumstances. Often, this is called the “best-interest” standard, but that term has been thoughtfully critiqued. Parents do not always have to do what is the absolute best thing for the neonate without regard to the interests of others. But, they may only do what is reasonable in the circumstances, considering the current and future interests of the neonate as well as the interests of other family members.
Because future interests loom large, one important basis for judging the acceptability of a proposed treatment choice is the accuracy of prognostication. What will the child’s life be like if treatment is provided? What will it be like if treatment is withheld? The better the prognosis for intact survival is, the more difficult it becomes to justify withholding or withdrawing life-sustaining treatment. The lower the likelihood of survival, or the higher the likelihood that survival will be accompanied by major impairment, the more justifiable it becomes to withhold life-sustaining treatment.
The problem with prognostication is that it is uncertain and probabilistic and changes over time with advances in treatment. So, estimating the likelihood that any given baby in any given neonatal intensive care unit (NICU) today will survive with or without severe impairment is necessarily an inexact science. Yet, such prognostications drive the ethics of neonatal decisions.
The uncertainty is greatest for a relatively small group of infants in the NICU. NICU care is virtually futile for babies born before 23 weeks of gestation. Outcomes are predictably good for babies born at 26 weeks or more of gestation. Most congenital anomalies can be treated with satisfactory outcomes. So, the real dilemmas are for babies born at 23–25 weeks of gestation or babies with complex congenital anomalies for which treatment is nonvalidated and the outcomes are ambiguous or uncertain. For such babies, the burdens of treatment are real, immediate, long term, and nontrivial (months of painful procedures like intubation, ventilation, intravenous catheterization, to name just a few, plus, of course, whatever permanent sequelae might ensue), while the benefits of NICU interventions are distant, statistical, and nonpredictable.
How, then, should doctors use evidence to improve ethical decision making in the NICU? We begin by discussing this at the level of the individual patient. At the end of this chapter, we discuss whether economic considerations should be considered in developing policies about the treatment of classes of patients.
CLINICAL ETHICS FOR INDIVIDUAL PATIENTS
Parents want to know the answer to two questions: Is my baby ...