A Second Look at “How Infants Die in the Neonatal Intensive Care Unit”

By Jennifer Popik, JD

Editor’s note. Jennifer Popik examined this new study earlier this week. But the study’s startling conclusions have gone un-criticized, as far as I can tell, except here. I asked Jennifer to take second look to help our audience appreciate what Dr. Julie Weiner was actually saying.

Writing in the July issue of Archives of Pediatrics & Adolescent Medicine researchers Julie Weiner, Jotishna Sharma, John Lantos, and Howard Kilbride investigated how babies were dying over a ten-year period in one Neonatal Intensive Care Unit (NICU).  The results were stunning. While many infants die while doctors are attempting to save or maintain their lives, there has been a steady increase (about one percent yearly) in the number of babies dying when they are taken off ventilators, feeding tubes, and other life support.

The study, “How Infants Die in the Neonatal Intensive Care Unit: Trends From 1999 Through 2008,” praises the fact that babies were increasingly being taken off ventilators, life support, or dehydrated to death. Weiner, the lead author, told Reuters Health that this result “makes us think that maybe we’re better recognizing futility of care and providing a better and better situation for these babies that are dying anyway” (emphasis added).

But what does “futile” care mean? It is critical to examine this word and the dramatically differing understanding various people have of it. 

Few would argue that a doctor should be required to provide physiologically futile treatment — meaning that in reasonable medical judgment the denial of the treatment would not hasten the patient’s death. But “physiological futility” is not always what this study’s authors are referring to. Often health care providers use the term “futility” to apply to a judgment that the quality of a human life, or the cost of sustaining it, makes it not worth living.

What is the medical purpose of “artificial nutrition”? It keeps the body functioning. Doctors are withdrawing or withholding nutrition and hydration not because it doesn’t work, but precisely because it DOES work. In this care, the treatment is not futile, but the physicians deem that the patient’s continued existence is not worth preserving.

The July study only looked at one NICU. But consider this amazing passage from Reuters.

“Dr. William Meadow, a neonatologist at the University of Chicago Medical Center, pointed out that these patterns might look different at another intensive care unit. For example, at his hospital, most very sick babies who are in ‘stable’ condition … don’t have that care taken away. He said that’s because poor, religious parents at his hospital seem to be more okay with the idea that their child might survive, though remain very impaired. In those types of cases, ‘it’s a reflection mostly of parent preferences.’”

While Dr. Meadow might attribute (or blame) the decision to seek life-sustaining treatment for their children on parental poverty or religious beliefs, the truth is that the law is also on the side of treatment in many cases, and certainly the provision of food and fluids. 

In 1984, Congress passed what is known as the Baby Doe Amendments to the Child Abuse Law.  The result of long negotiations among disability rights, right-to-life, and medical groups, this less-than-perfect statute nevertheless sets a standard of care clearly violated by the practices described in the article.

The law states that health care providers are never allowed to deny appropriate nutrition, hydration, or medication, and may not withhold medically indicated treatments unless the infant is “chronically and irreversibly comatose,” the treatment will promote the child’s death, or the treatment is “futile in terms of the survival of the infant.”  The law and its implementing regulations are clear that opinions regarding child’s “quality of life” are not valid reasons for withholding medical care. 

Provision of federal funds for state child abuse programs is supposed to be dependent on the states assuring that denial of ordinary medical treatment for children born with disabilities will be treated as a form of child abuse or neglect and responded to accordingly with legal remedies.

When the authors of the study published in the Archives of Pediatrics & Adolescent Medicine report that hydration and nutrition are being withheld, it begs the question about how we treat the sickest and most vulnerable.  Do we give them care and dignity, or do we starve and dehydrate them in violation of Federal Child Abuse Law?

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