News & Observer | newsobserver.com | Federal law offers some guidance, but no absolutes

Published: Feb 18, 2007 12:00 AM
Modified: Feb 18, 2007 07:42 AM

Federal law offers some guidance, but no absolutes

 

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As a neonatologist at Duke University School of Medicine, Dr. Michael Cotten is specially trained in the care of newborns with complex medical conditions.

In 1963, first lady Jacqueline Kennedy gave birth to Patrick Kennedy six weeks early, after 34 weeks of gestation. He died two days later, after developing respiratory distress syndrome, or RDS, a disease in which the supply of surfactant in the lungs is insufficient to keep them from collapsing during exhalation. In that era, babies at his gestational age with RDS had a 20 percent to 30 percent chance of survival.

Forty-four years later, we have added technologies and therapies, including supplemental surfactant for RDS. Survival rates for babies such as Patrick approach 100 percent. Today, the current margin of viability rests at approximately 23 weeks of gestation, meaning some infants born much earlier than Patrick are able to survive.

At Duke University Hospital, neonatologists talk with women who are in labor at 23 weeks and their families about the outlook for their babies. We then ask whether they want us to provide aggressive life support in the delivery room, inserting a breathing tube and blowing air into fragile lungs, or whether they prefer that we provide comfort care while a life comes to a very early end.

About one-third of 23-week babies given full support in the delivery room are able to survive and go home when they receive care in hospitals with the most modern technology and with dozens of people dedicated specifically to care for sick babies.

Those who die usually do so in the first weeks after birth. Those who survive must weather a three- to six-month stay in the intensive care unit. As part of well-intentioned care, they are stuck with needles, have tubes placed in their throats for breathing and feeding and undergo dozens of X-rays. Among the possible complications, many have leakage of blood from fragile brain blood vessels. A bad bleed guarantees a very poor neurologic outcome.

Among the survivors, more than half will be blind or deaf, be severely retarded or have cerebral palsy or severe lung disease. Some will have more than one of those problems.

Despite the grim story, most parents say they want us to "do everything" for their 23-week child, starting in the delivery room. So we usually do.

Neonatologists aren't absolutely sure that aggressive delivery room support and the subsequent arduous hospital course are the best approach for all 23-week infants. Lawmakers give some guidance in the Born-Alive Infants Protection Act of 2001. This federal law requires that all babies born with a heartbeat must be considered alive, with the same legal protections as any person.

But this law does not dictate what families and physicians must do for infants at the edge of viability. Some policy-makers suggest that this law provides the groundwork for a rule requiring hospitals to resuscitate premature babies and forbidding the withdrawal of life support.

Physicians leading the Neonatal Resuscitation Program, which provides guidance on delivery room resuscitation, have stated that "at the time of delivery ... the medical condition and prognosis of the newly born infant should be assessed. Decisions about withholding or discontinuing medical treatment that is considered futile may be considered by ... providers in conjunction with the parents acting in the best interest of their child." Time will tell whether lawmakers and the courts will exert more influence on decisions now handled by caregivers and families.

If severe complications arise for a baby in intensive care at Duke, caregivers and parents decide together whether to withdraw life support and begin palliative care, in which the infant's comfort is the primary concern. Regardless of the decision, one consistent aim is that families have the opportunity to love their babies.

As physicians entrusted with the care of babies on the cusp of life, we humbly share with parents their agony over decisions regarding starting, withholding, continuing or withdrawing life support. Our hope is that as we make medical advances in neonatology, we will be able to ease this burden for future generations.

Ron Goldberg, David Tanaka, Phil Rosoff and Angela Holder, members of the Duke Medical School faculty, contributed to this essay.

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