By Jennifer Popik, JD, Robert Powell Center for Medical Ethics
A study published last week in the New England Journal of Medicine demonstrates widespread discriminatory denial of life-preserving medical treatment to premature infants based on fear that if assisted to live they might have disabilities – in defiance of protective federal law. It provided a startling snapshot into the treatment of very premature infants.
The study looked at the survival and outcomes of almost 5,000 babies born before 27 weeks gestation at 24 hospitals from 2006 -2011. It found that 23% of infants are surviving at an astonishing 22 weeks gestation (20 weeks after fertilization) with treatment, but that many hospitals deliberately deny them life-saving medical treatment. In fact, the hospital attitude made the most significant difference in the probability of survival of these very premature babies.
Writing about this first major look into hospital practices regarding premature babies, Marilynn Marchione, AP’s Chief Medical Writer, explains, “There was a wide range — some hospitals always gave active treatment to the youngest preemies as opposed to just comfort care, but others never did.”
According to the AP article,
Parents need to know that “the hospital that you go to might determine what happens to your baby, although many parents are not in a position to shop around when they find themselves in these emergency situations,” said one study leader, Dr. Edward Bell of the University of Iowa.
In the NEJM study, five hospitals always actively treated babies at 22 weeks, but four other hospitals never did. When a baby was actively treated at 22 weeks, he or she was 18% more likely to survive than if only comfort care had been given.
According to Marchione,
About 12,000 babies each year in the United States are born between 22 and 25 weeks gestation. …Researchers looked at rates of comfort care versus active treatment, such as breathing machines, feeding tubes or heart resuscitation. Active treatment was given to 22 percent of babies born at 22 weeks, 72 percent of those at 23 weeks and nearly all beyond that. Survival without severe impairment also was higher with treatment: 15 percent versus 3 percent at 22 weeks, and 25 percent versus 18 percent at 23 weeks.
The reason that some hospitals treat these infants and others do not is not based on the equipment available, or hospital capability, but rather is grounded in assumptions the hospitals are making about the infants’ future quality of life.
According to Marchione,
“We just seem to be resuscitating more and more tinier babies, and there are consequences,” said Dr. Jonathan Muraskas, a neonatologist at Loyola University Medical Center in Maywood, Illinois. Despite medical advances, the rates of cerebral palsy, blindness, deafness, asthma and other major problems have not changed much, he said.
In other words, Dr. Muraskas is saying that, yes, many of these babies will indeed survive, but will have disabilities. The assumption is evident: death is preferable to living with significant disability. This bias persists despite the fact that, as the study documented, providing active treatment earlier did yield dramatically less severe impairments.
For the past three decades, there has been controversy over cases in which children born with disabilities have been denied lifesaving medical treatment. The best-known instance is “Infant Doe.”
Infant Doe was born with Down syndrome in Bloomington, Indiana, on April 9, 1982. He slowly starved to death as court after court, in a widely publicized process, turned down efforts to save his life. He died after six days even as attorneys were en route to file a petition with the United States Supreme Court.
In March 1983, the Reagan Administration established a hotline to report cases of such denial, which it maintained would violate existing federal law prohibiting discrimination on the basis of handicap among recipients of federal funds, a position ultimately rejected by the U.S. Supreme Court in June 1986.
In the interim, Congress adopted the Child Abuse Amendments of 1984.
Under that law, which remains in effect, in order for a state to receive federal funding for its child abuse and neglect program, it must have in place and enforce procedures to prevent “withholding of medically indicated treatment from disabled infants with life-threatening conditions.” (The exact nature of “medically indicated treatment” is detailed in the statute and its implementing regulations.)
Thus, the denial-of-treatment practices in many hospitals are directly contrary to the protective provisions of federal law designed to prevent discriminatory denial of treatment based on present or projected disability.
The AP article closes:
Hospitals’ actions had “a dramatic influence” on how infants fared, Dr. Neil Marlow of University College London commented in the journal. Just giving parents survival statistics without saying whether treatment was attempted “is misleading and helps to make poor survival a self-fulfilling prophecy,” he wrote.
Editor’s note. For more on this study, see here.