Making end-of-life decisions at birth

August 9, 2013 

— Fifty years ago last Wednesday, Americans were gripped by the fate of a baby: Patrick Bouvier Kennedy, the first child born to a sitting president since the 19th century, and John F. Kennedy’s last. He arrived on Aug. 7, 1963, 5 1/2 weeks premature. Despite medical heroics, including the use of a hyperbaric oxygen chamber, he died 39 hours later.

Neonatal care has improved greatly since then. Were he born today, Patrick would very likely survive and have a healthy life, too.

For all the biomedical advances, though, the key ethical problems surrounding premature birth remain. Today, babies as much as 11 weeks younger than Patrick can be saved at birth. The problem is that their prognoses are often much worse than his would have been.

I am a neonatologist. I save babies. Most of them, especially those born after 28 weeks, will suffer at most mild or moderate disabilities. But of those born before 28 weeks – 30,000 of the half-million babies born prematurely each year in this country – many will have serious physical, social or cognitive problems.

Most extremely premature babies will experience at least one complication – bleeding in the brain, infections, intestinal perforation, severe lung damage – before discharge. Many will need treatment long after birth, sometimes for life, at great financial and emotional cost to them and those around them.

A few months ago I cared for just such a child. Let’s call her Miracle. She was born at 23 weeks’ gestation and weighed a little over a pound. Despite the bleak prognosis, her parents asked that we resuscitate her in the delivery room.

So we did. But over the next eight weeks, to keep her alive, we had to prick Miracle’s heel so many times she developed scarring. We suctioned her trachea hundreds of times. We put tubes through her mouth and into her stomach, we stabbed her again and again to insert IVs and we took blood from her and then transfused blood back. We gave her antibiotics for two severe infections.

Each of these events created suffering – for Miracle and her parents. Her mother visited daily and developed an anxiety disorder. Her father came in only once a week, the pain and sadness was so great.

After eight weeks, Miracle came off the ventilator we had put her on. But three days later, we had to turn it back on, and it was possible she would die or remain on the ventilator permanently if we didn’t give her steroids, which can have side effects as serious as cerebral palsy. Her mother opted for the steroids. But Miracle’s father was angry. He muttered to me: “Why do you do this? Why do you keep these babies alive?”

I’ve been thinking about that question for decades and haven’t found a simple answer. Some parents believe that withholding or withdrawing life-sustaining treatment will prevent their infant from suffering and living a life not worth living; others consider it murder. Some families soar in caring for their disabled kids; others disintegrate.

Ultimately, parents have the right to decide, but we physicians must help them make informed decisions. I asked Miracle’s father whether anyone had talked to him about resuscitating Miracle before she was born. He vaguely remembered a conversation but hadn’t understood what treating such a tiny premature baby meant.

And nobody talked to him after Miracle was born about continuing life-sustaining treatment. In fact, he had gotten to her two-month birthday without realizing that her suffering might end in death. We had updated his wife, but she didn’t like to hear bad news and didn’t tell him.

Luckily, the news has improved. Miracle is off the ventilator and will likely survive to be discharged, though she will suffer from chronic lung disease.

Even so, we need to make sure both parents are always kept part of the discussion, to ensure we have their informed consent throughout treatment. It can’t be just one conversation.

More broadly, when in the first trimester obstetricians talk with pregnant women and their partners about testing for genetic anomalies, they should include discussion of values and attitudes toward life, death and disability, or at least recommend such discussions. Certainly parents at high risk of giving birth to premature babies, or to babies with severe congenital defects, should receive such counseling, including from neonatologists and other specialists.

Sometimes, I think we doctors need to do more than inform. On occasion, I’ve offered to make a life-or-death decision for parents. If they agree, they are essentially making the decision, but are shifting the burden to me. It’s harder for parents to say, “I unplugged my baby,” than to let the doctor do it.

Our culture is slowly growing more comfortable talking about end-of-life issues as they relate to the elderly: whether to allow a natural death or prolong life even if it means suffering.

In my world, though, the “surrogate” decision makers are young parents of infants like Miracle. And they are still completely unprepared. It’s time we broaden the discussion to include them.

The New York Times

April R. Dworetz is an assistant professor of pediatrics, specializing in neonatology, at Emory University

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