The Parents' Impossible Choice: Increase Your Premature Baby's Risk of Death or Blindness?

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How informed is informed? What is the psychological effect of being told of every last possible complication of a treatment? Do all people react the same way to information, or does their reaction depend upon such factors as their intelligence, level of education, and cultural presuppositions, and if so does the informing doctor have to take account of them, and if so how and to what degree? An orthopedic surgeon once told me that obtaining informed consent from patients now takes him so long that he had had to reduce the number of patients that he treats.

An article in a recent edition of the New England Journal of Medicine extols the ethical glories of informed consent without much attention to its limits, difficulties and disadvantages.

It starts by referring to a trial of the level of oxygen in the air given to premature babies, of whom very large numbers are born yearly. Back in the 1940s it was thought that air rich in oxygen would compensate for premature babies’ poor respiratory system, but early in the 1950s British doctors began to suspect, correctly, that these high levels of oxygen caused retinal damage leading to permanent blindness. Fifty years later, the optimal level of oxygen is still not known with certainty, and a trial was conducted that showed that while higher levels of oxygen caused an increased frequency of retinopathy, lower levels resulted in more deaths. The authors of the trial have been criticized because they allegedly did not inform the parents of the possibility that lower levels of oxygen might lead to decreased survival, which was reasonably foreseeable.

How reasonable does reasonability have to be? Many of the most serious consequences of a treatment are totally unexpected and not at all foreseeable (no one suspected that high levels of oxygen for premature babies would result in blindness, for example, and it took many years before this was realized). Ignorance is, after all, the main reason for conducting research.

But suppose parents of premature babies had been asked to participate in a trial in which their offspring were to be allocated randomly to an increased risk of blindness or an increased risk of death. Surely this frankness would have been cruel, all the more so as the precise risks could not have been known in advance. Parents would feel guilt alike if their babies died or were blind.

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Now that the answer is known, more or less, parents can be asked to choose in the light of knowledge: but their informed consent will be agonizing because there is no correct answer. Personally, I would rather trust the doctor sufficiently to act in my best interests in the light of his knowledge and experience. So far in life I have not had reason to regret this attitude, though I am aware that it has its hazards also. But

…why should they know their fate?

Since sorrow never comes too late,

And happiness too swiftly flies.

Thought would destroy their paradise.

No more; where ignorance is bliss,

'Tis folly to be wise.

And I have often thought what medical ethicists would have made of the pioneers of anesthesia. They did not seek the informed consent of their patients, in part, but only in part, because they hadn’t much information to give. What moral irresponsibility, giving potentially noxious and even fatal substances to unsuspecting experimental subjects without warning them of the dangers!

And there are even some medical ethicists who think we should not take advantage of knowledge gained unethically. All operations should henceforth be performed without anesthesia, therefore.

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