Published in: Balitmore Sun
Issue/Volume: May 12, 2008
Written by: Stephanie Desmon

5/12/2008 – Ali Barbieri occupies just a sliver of her grown-up bed at the Johns Hopkins Children’s Center, her 5-month-old legs suspended in a miniature traction rig that holds in place the hips she dislocated at birth.

Most days Ali’s mother, Natalia, sits with her all day, caressing her, distracting her with the toys that share her bed, trying to introduce her to solid foods. Barbieri knows just how well her daughter is sleeping, eating and feeling.

So it makes sense to involve her in Ali’s care – and to have her on hand when the doctors do their early-morning rounds. The large circle of white coats has traditionally stopped in front of each child’s room to discuss her case, her prognosis and the plan of care for the day. But the circle didn’t include parents.

Hopkins and other teaching hospitals are changing that by inviting parents to be full participants in their children’s medical rounds each day – to hear the full truth about how their children are progressing and to jump in with questions or comments when they have something valuable to ask or add. Parent involvement, according to those involved, is improving the care that professionals provide.

“The parents know the children better than anyone else. They can say, ‘Something’s not right,'” said nurse Melissa Roman, who helped establish these so-called “family-centered rounds” on the infant and toddler floor at Hopkins in March.

“What the families said to us is, ‘We hear what you’re talking about anyway, so you might as well involve us,'” said Loretta Wall, a social worker who chairs the children’s center’s patient- and family-centered initiative.

“We have to no longer view them as visitors. They’re our partners. They need us and we need them … to achieve the best outcome for their child.”

Medical matters are still the portfolio of the doctors and nurses. Parents don’t have medical degrees and don’t know how to diagnose their children or what the best treatments should be.

But professionals can and should call on parents to help make decisions based on options provided to them, said Dr. Stephen E. Muething, a pediatrician at Cincinnati Children’s Hospital, a pioneer in family-centered rounds.

“In the old days, it was more, ‘You’re the doctor, you decide,'” Muething said. “Families want to be involved in decisions. It switches the control.”

On a recent morning, Natalia Barbieri came out of Ali’s room to take part in rounds. Ali had been in isolation since her arrival – doctors discovered she had a contagious infection when she arrived. Whoever wanted to go into her room had to wear a gown over their clothes, as well as a surgical mask and gloves.

The doctors discussed whether it was time to lift the restrictions on visitors – which would involve yet another test, one that involved suctioning the little girl’s nose. Her mother asked them to wait till the afternoon so she could be there. “It’s not very fun,” Barbieri said of the suctioning.

The doctors were happy to accommodate her. Ali was taken off isolation the next day.

Bringing in parents wasn’t as simple as opening the traditional circle a bit. Some doctors were skeptical: Could they be as frank and open in their discussions? Would it take too long to include someone with less understanding of medical concepts? Would they be able to explain themselves in plain English, and not doctorspeak? Would there still be time for senior doctors to do the teaching central to medical rounds?

Dr. Jason Custer, pediatric chief resident at Hopkins, said his colleagues are working kinks out of the system every day. But he said everyone seems to be benefiting from the effort to provide full disclosure.

Parents of patients used to watch through the windows as doctors did rounds. They wondered, “Why aren’t they telling me this stuff?” Custer said. “They always thought there was something they were missing. The more transparent you are, the more parents feel like they’re getting the whole story.”

The scariest situation for a resident is examining a sick child and struggling with a diagnosis, he said. “Sometimes parents want to hear that – we don’t know, we’re trying our best to figure out what’s wrong.”

That’s just what Adrian Osborne of Aberdeen and her husband, Roger, have faced in recent days. Born April 28, their third son, Christopher, was admitted to Hopkins a week later after he stopped feeding.

Doctors discovered a heart murmur, and in rounds each morning, they discuss the tests they’re conducting to rule out various causes. So far, Christopher has had an EKG, a spinal tap and lots of blood drawn. For now, he’s on antibiotics, as doctors think he may have an infection.

His mother says she prefers being in on the doctors’ conversations, even though she usually ends up crying through the whole thing.

“Every day, they come up with, ‘It might be this, maybe,'” Adrian Osborne said. “You don’t know what to think. I’m not a doctor. But I definitely would rather know.”

So doctors and nurses may spend a little more time on the front end, explaining difficult concepts and bringing parents’ voices into the conversation, but many say it saves time later on.

Under the traditional system, doctors made decisions about care during morning rounds, but parents often had questions later in the day. That required paging a doctor to clarify what he and colleagues had discussed hours before.

“Now everyone’s on the same page before the day gets started,” Roman said. “There’s that whole piece of playing telephone [tag] that’s eliminated, and now everyone’s at the same table, so to speak.”
If the pilot program goes well, the entire children’s center will begin family-centered rounds in July, when a new crop of medical interns arrives. For them, it will be part of the culture from their first day.

On the same morning that doctors saw Ali Barbieri, they gathered outside 21-month-old Drake Matheiny’s room. At rounds the day before, doctors said they wanted to draw blood from Drake, who had been admitted for surgery to ease swelling in his brain that was caused by a malformation. His mother, Ashley, requested they hold off a day. “He’s been through so much,” she told them.

On this morning, they decide that their concerns about the boy’s sodium levels have been alleviated, so there’s no need to draw blood. “He’s a much more well-looking child,” medical student Kelly Burke reports to the rest of the group.

They discuss his coming release, asking Ashley Matheiny a few questions about her son’s medications. And the meeting is soon over.

Matheiny said she appreciates having the chance to ask questions – and having a role in deciding how her son is treated. Mother and child have spent a lot of time in and out of the hospital since Drake’s birth, and she has often felt powerless. Now, she says, it’s nice to be consulted.

“You’re the best doctor for your child,” she said.

She was reminded of the angst of going home to York, Pa., after an earlier hospital stay, soon after a shunt was implanted in Drake’s skull to drain excess fluid from his brain. She didn’t know exactly what was wrong – but she knew “something’s just up.”

She rushed her 10-month-old back to Hopkins, where it was found that the shunt was draining too much fluid, a problem that’s difficult to spot with standard tests.

“You just have gut feelings when something’s not right,” she said.