Parents have more say in toughest choices for sickest infants

PALO ALTO, Calif. – Dr. William Benitz walked past the rows of clear plastic isolettes in the neonatal intensive care unit at Lucile Packard Children's Hospital at Stanford.

There's little room to navigate — the space is jam-packed with the beeping machines, ventilators and nurses, who can care for as many 70 fragile infants. One tiny pink baby here was born weighing 13 ounces.

"A can of Coke is 12 oz. So imagine a baby who could almost curl up in a fetal position and fit inside a Coke can," said Benitz, the hospital's chief of neonatology.

For Benitz, who first came to Stanford 42 years ago as a medical student, the ability of doctors today to save babies this small feels like something of a miracle. But as far as medical technology has come, he says, some of the sickest and most premature babies who pass through his NICU won't make it or will go on to suffer severe lifelong disabilities.

One of the most difficult parts of Benitz's job is determining how much treatment to give babies like these and when it is time to let them go. More and more, doctors like Benitz are looking to parents to help make these decisions, based on their own values and preferences.

The American Academy of Pediatrics recently advised that parents should be given wide latitude to decide how aggressive doctors should be in cases where their child is at high risk of death or serious disability. In practice, this means parents willing to raise a child with severe disabilities might elect to pursue more aggressive care than those parents who do not want to take on the risk.

That's a big change from the past. When Benitz first started here in 1973, doctors were considered the absolute authorities on life-or-death decisions. They consulted with colleagues, decided how much intensive care to give based on likely outcomes, and often didn't even tell the parents until they'd acted.

But some parents were angry that doctors had stopped intensive care without consulting them. Others were furious that they had not been given the option to end treatment of babies who ended up with severe disabilities. Such cases coincided with a larger movement in which patients fought for more say in their own medical care.

The choices parents face are often wrenching. In May 2015, Chris and Karin Belluomini had a daughter, Joy, who was born with Down syndrome, multiple heart defects and fluid around her lungs. The doctors at Packard gave them the option of just providing comfort care, treatments that would soothe their daughter and relieve any suffering, but weren't aimed at fixing her heart problems.

Joy remained in intensive care for three difficult weeks. By the end, her blood 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, so that Joy could die peacefully in their arms, disconnected from the tubes and needles.

Both parents said it was difficult to even imagine not being a part of such decisions.

"You kind of don't want that responsibility and would rather have someone say or do it for you, but in the end, I wouldn't want it to have been any other way," Chris Belluomini said.