[The following case is copied, with minor modifications, from Richard M. Zaner, Ethics and the Clinical Encounter (Prentice Hall, 1988), 21-26.]
We have to learn from clinical situations. Suppose we granted, however unlikely this may be, that we knew, with full clarity and even certainty, that a particular infant could not benefit from any of the possible therapies currently at hand in the most sophisticated NICU, or that the medical risks of using any therapies far exceeded any possible benefit the infant might realize from them. In the language of the Final Rule (1985) for the Amendment to the Child Abuse Prevention and Treatment Act (1984), all potential treatments are either ‘futile’ or ‘virtually futile’ in terms of the infant’s survival, and the treatments themselves are therefore ‘inhumane.’
Here is a clear-cut social policy coupled with several rather obvious moral principles. If ‘reasonable medical judgment’ indicates that an infant cannot ‘medically benefit,’ or would be put to more ‘risk’ than ‘benefit,’ or would merely have its life prolonged needlessly with additional pain and suffering, then otherwise therapeutically indicated medical or surgical procedures need not be used. Neither beneficence nor dignity requires foolish or pointless treatments except those that meed the minimum requirements of dignity (routine medication, hydration, and nursing care) while the baby is allowed to expire.
Now suppose, knowing all this, we are presented with a 27-week gestational age female infant weighing 970 grams at birth. Born at a local hospital by cesarean section because of fetal distress, the infant’s Apgar score at birth (assessment of heart rate, respiratory effort, muscle tone, reflex irritability, and color) was extremely poor (2 at 1 minute, 6 at 5 minutes; a score of 10 is normal). The mother was a 17-year-old woman married to a 22-year-old man. This was their first child, and although the pregnancy was unplanned, it seemed welcome. The infant was immediately transferred to the pediatric surgical unit of the regional tertiary, acute-care center, for correction of an omphalacele (mid-line abdominal wall defect resulting in the visceral organs lying exposed); a diaphragmatic defect (partial absence on both sides) was noted during surgery. The surgical team only closed the abdominal skin (mainly for cosmetic purposes), as the infant had multiple congenital anomalies requiring evaluation prior to any further surgical efforts; nothing could be done to correct the diaphragmatic defect.
The infant was admitted to the center’s NICU at about two weeks of age for evaluation and treatment. The diaphragmatic effect had indicated mechanical ventilation from birth; indeed, resuscitation during surgery had been required because of a hypoxic incident. Other respiratory problems seemed present, along with other anomalies. To permit medical evaluation, the ventilator was maintained at very high settings: respiratory rate of 100, oxygen concentration of 100 percent, and very high airway passage pressures. Over a period of days, the following prominent problems were diagnosed:
- Mid-line abdominal defect with partial absence of diaphragm, suggesting possible additional neurologic deficits;
- Multiple heart defects, including several holes permitting reverse shuntings of bloodflow, overriding aorta, and patent ductus ateriosis (PDA), with cardiological outcome judged very poor;
- Central nervous system (CNS) evaluation with EEG showed diffuse faulty brain-wave activity (encephalopathy) and abnormal seizure activity, due to congenital problems or secondary to hypoxia during surgery, and neurological outcome judged very poor;
- Gastrointenstinal feeding was not possible because of abdominal problems and use of mechanical ventilation, and the infant was placed on total parenteral nutrition (TPN: “tube feeding”), which could not be replaced, with resultant inadequate caloric intake;
- Pulmonary status requried mechanical ventilation at the highest settings, which had to be maintained because of diaphragmatic defect, poor oxygenation, and other problems.
Having at hand, as we’ve supposed, a clear-cut social policy and several moral principles, what should be done for this infant?
- What are the relevant contexts and interests to consider in answering the question of what “ought to be done?” How should they be prioritized in case they come up with different recommendations?
- Several times during her hospitalization she developed airway infections (not unexpectedly, due to the use of the ventilator). Does the policy require treatment of the infections? Do the moral principles?
- The patent ductus arteriosis (PDA) can be closed with indomethacin, and if not closed could well be lethal. Do the policy and/or the principles require treatment?
- The law talks about “withholding treatment” being acceptable. What does this mean? May the ventilator be discontinued after evaluation shows poor prognosis? Or, to the contrary, must it be kept in place, and only contemplated treatments “withheld?”
- Policy indicates that decisions to withhold or provide medical treatment is to be made by the parents. To what extent should the parents’ opinions on the matter be honored? To help get started on this, think in terms of the possible extremes: (a) the parents insist on doing “everything possible to prolong our baby’s life” and (b) the parents insist that nothing further be done for their baby, who should be allowed to die as quickly and painlessly as possible. Should the response of medically informed professionals be different in the cases of (a) and (b)?
- Zaner concludes his discussion with the following comment: “It ought to be clear that restricting moral discourse to the formal level of principles, or that of social policy, fails in several ways to be responsive to the real, clinical demands of such a case. However caring one might want to be, it is simply not clear just what that requires of us in this case, nor are there any clear guidelines for determining just what the moral principles and policies imply for clinical decision making …. We simply do not know what caring amounts to, since otherwise contradictory actions (continuation or discontinuation [of treatment]) could both be consistent with it” (26). What does this suggest about ethics in general? Do you agree?