New Study Reveals that Treatment Being Withheld from Preterm Infants in Violation of Federal Law

By Jennifer Popik, JD

In the July edition of the Archives of Pediatric and Adolescent Medicine there is a startling look at how infants are dying in neonatal intensive care units (NICUs). The trend of an increasing numbers of parents forgoing life-sustaining treatment for their young infants, begun a decade before, continued during a ten-year period from 1999 through 2008, according to “How Infants Die in the Neonatal Intensive Care Units.”

A news account of the study, conducted by Dr. Julie Weiner and her colleagues, summarized the findings thusly: “Most deaths that occur in neonatal intensive care units at U.S. hospitals are due to withdrawal of life support and the withholding of lifesaving measures.”

The study examined a regional referral neonatal intensive care unit. The authors found not only that the non-treatment trend had continued, but also that there has been a rise in the number of children with do-not-resuscitate orders.

Weiner et al. found that of the infants who died in the NICU, forty-five percent  had major birth defects, and 17 percent of those infants were also very preterm (less than 32 weeks of gestation). Thirty-five percent of the infants were very preterm and had no birth defects, according to the report.

The researchers found that 61.6 percent of infant deaths followed withdrawal of treatment and 20.8 percent followed withholding of treatment.

What’s worse is that there seems to be no slowing this trend.  Over the 10-year study period, the number of deaths that occurred after withholding of treatment increased by an average of 1.03 deaths per year. Among very preterm infants, deaths following withholding of treatment increased from less than 10 percent to more than 30 percent.

What is quite shocking is that much of what is going on is against the law.  In 1984, Congress passed what is known as the Baby Doe Amendment to the Child Abuse Law.  The law sets forth specific criteria and guidelines for the treatment of seriously ill and/or disabled newborns, regardless of the wishes of the parents.

The law came about as a result of several widely publicized cases involving the deaths of handicapped newborns. They had either been starved, dehydrated, or had medical treatment withheld.

The prime catalyst came in 1982 when “Baby Doe,” a Bloomington, Indiana baby with Down syndrome, was starved to death over six days after his parents declined surgery to fix a problem in his esophagus which prevented him from eating. Surgeon General  C. Everett Koop argued the child was denied treatment not because the treatment was risky but rather because the child had Down syndrome.

The law states that health care providers are not allowed to withhold nourishment or medically indicated treatments unless the infant is comatose, the treatment will promote its death or is “futile in terms of the survival of the infant.”  The law is also clear that opinions regarding child’s “quality of life” are not valid reasons for withholding medical care.  Receipt of federal funds for child abuse programs is supposed to be dependent on the states assuring that denial of ordinary medical treatment for handicapped babies will be treated as a form of child abuse or neglect and responded to accordingly with legal remedies.

But the study in the July Archives of Pediatric and Adolescent Medicine shows very clearly that these federal laws are being ignored, and with no penalty.

Although the study ultimately concludes that the “Significant increase in withholding of care suggests improved recognition of medical futility and desire to provide a peaceful death,” this, in fact, is often child abuse under the letter of the law, and a trend that cannot be allowed to continue.

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