In Caring For Sickest Babies, Doctors Now Tap Parents For Tough Calls : Shots - Health News Doctors were once unquestioned authorities on how aggressively to treat the sickest and most premature babies. Then parents started pushing back for more say. The responsibility can be excruciating.
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In Caring For Sickest Babies, Doctors Now Tap Parents For Tough Calls

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In Caring For Sickest Babies, Doctors Now Tap Parents For Tough Calls

In Caring For Sickest Babies, Doctors Now Tap Parents For Tough Calls

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STEVE INSKEEP, HOST:

We are also tracking a different matter of life and death today - a change in the treatment of babies born prematurely. That's the focus of Your Health this morning. The change is in who decides what treatment to give a baby. Doctors used to decide. Now, increasingly, parents do. Jenny Gold reports.

JENNY GOLD, BYLINE: Dr. William Benitz first came to Stanford 42 years ago as a med student. Back then, the neonatal intensive care unit, or NICU, was a recent concept.

WILLIAM BENITZ: It was four really pretty small rooms. It was pretty rudimentary, in terms of what we could do.

GOLD: Today, Benitz is chief of neonatology at Lucile Packard Children's Hospital at Stanford. He oversees a NICU with 74 beds and the very latest technology. He peers through the clear plastic side of an isolet at a tiny pink infant who was born weighing just 13 ounces.

BENITZ: A can of Coke is 12 ounces, so you can imagine a baby who could almost curl up in a fetal position and fit inside a Coke can.

GOLD: If this baby had been born in the 1970s or early '80s, the doctors wouldn't even have tried to save her.

BENITZ: If we thought a baby weighed less than 800 grams, we didn't even bring them back from the delivery room. We just wrapped them in a surgical towel and gave them to the mother.

GOLD: Doctors back then didn't have the technology to save such tiny babies. But there was another important difference. Doctors were considered the absolute authorities on life-and-death decisions. They consulted with colleagues, decided how much intensive care to give and often didn't even tell the parents until they'd acted.

BENITZ: It just never occurred to anybody that that might be a reasonable conversation to have.

GOLD: As technology improved and doctors started trying to save sicker and even more premature babies, there were more decisions to make. Should they use the ventilator, attempt a heart surgery? Those interventions could help babies survive. And some did fine. But others didn't. Even today, just 30 percent of babies born at 24 weeks, for example, survive without disabilities.

BENITZ: A lot of them ended up with significant impairments. In the mid '80s, we began to hear from families that maybe that wasn't consistent with their goals for their children.

GOLD: Social worker Jane Zimmerman, who works with Dr. Benitz, says at the time many doctors were actually trying to protect parents by not involving them in decisions.

JANE ZIMMERMAN: They didn't want parents to have to take on that lifelong responsibility of having felt they made a decision that resulted in their child's death.

GOLD: But some parents were angry that doctors had stopped intensive care without consulting them. Others were furious for the opposite reason, that they had not been given the option to end treatment of babies who ended up with severe disabilities. Some filed lawsuits. By the mid-'90s, parents were much more involved in decision-making. Zimmerman says these are often the most difficult decisions of their lives.

ZIMMERMAN: Some parents want to do everything because they feel like if they haven't done everything then they're not good parents. And some parents are much more cautious.

GOLD: Chris and Karen Belluomini know what that's like. Their daughter, Joy, was born at Packard Children's in May with Down syndrome, heart defects and fluid around her lungs. They were given the option of just offering her comfort care. They rejected that. They weren't afraid of Joy being disabled. But they had their limits.

KAREN BELLUOMINI: If her heart did stop, we did not want her to be resuscitated. We did not want her to have to go through that.

GOLD: After three difficult weeks in the NICU, Joy's oxygen levels were so low that the doctors said she could die at any time - possibly when her parents weren't there. That's when the Belluominis decided to remove life support. Joy died peacefully in their arms, disconnected from the tubes and needles.

KAREN BELLUOMINI: As a parent, you just want to do everything and anything to protect your child. To know that we did have a say in that was extremely important.

GOLD: The American Academy of Pediatrics agrees and recently advised that parents should be given wide latitude to make decisions in these cases. Still, Chris Belluomini says the decision to withdraw care was wrenching.

CHRIS BELLUOMINI: You almost don't want to have that responsibility. You almost kind of want someone to say for you and do for you. But in the end, I wouldn't want it to have been any other way.

GOLD: Parents don't always have a choice in the matter. Doctors sometimes feel obligated to provide life-saving care because it's so likely to help. More often, Benitz says parents want to continue care, even when doctors don't believe it will help the baby recover.

BENITZ: People are so accustomed to seeing in the newspaper and on TV the descriptions of the miracle babies.

GOLD: Medical care has come a long, long way since Benitz started practicing. And most babies in the NICU go on to lead healthy lives. But technology still has limits. And Benitz says it's these cases of uncertainty where taking into account the parents' wishes can matter most. For NPR News, I'm Jenny Gold.

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