Jackie had been born with a bowel disorder called long-segment Hirschsprung’s disease, in which certain intestinal nerve cells don’t develop fully during pregnancy. The procedure was a total success and, after a six-month stay at Packard, Jackie was free to go home. As any doctor knows, that’s often when the trouble begins — infection and other complications can follow a procedure, and without health-care providers on hand, these can worsen quickly.

Jackie hadn’t been home long when her temperature started to rise. It was a subtle change — she didn’t sweat profusely or change colors — but her mother, Liann, phoned their nurse at Packard Children’s instantly. The call might have saved her daughter’s life. Jackie’s procedure had left her at risk for a dangerous obstruction, one whose initial symptoms present mildly but require immediate attention. As Karen Wayman, Packard’s director of family-centered care, put it, “the average parent might have wavered in making the call to the hospital, a little unsure of what to do, waiting to see whether the temperature rose further.” Liann and her husband were average parents, too — but before and after the transplant, Liann had spent months at Packard, participating in something extraordinary: a new program that’s changing the very essence of care at Packard and children’s hospitals across the country.

The rise of family-centered care in pediatric hospitals in the United States and other Western, developed countries represents a fundamental shift in how they operate. It’s a change that started 30 years ago, with the increasing awareness of the importance of meeting children’s psychosocial and developmental needs — and the importance of the family’s role in accomplishing that. Family-centered care has continued to gain ground and is supported by research and leading organizations such as the U.S. Institute of Medicine, the American Academy of Pediatrics and the American Hospital Association.

Rather than bystanders to their child’s care, parents are increasingly regarded as essential partners in the process, no less vital to recovery than the doctor or nurse. From consulting them on their child’s treatment to inviting them to serve on family advisory councils, hospitals are reinventing their relationship to the people historically asked to wait in the hallway for news. This might sound like compassion, or perhaps a dollop of good PR. Not at all. Hospitals have found it’s simply good medicine.

It certainly was in Jackie’s case. Instead of attempting to memorize a complex care regimen hours before her daughter left the hospital, Liann had been learning the ropes from the day she checked in — including the subtle signs and dire consequences of a fever.

“In the past, the nurse would have come in, hung the drip bags, asked, ‘How are you doing?’ said, ‘Here’s the plan for the day’ and left,” Wayman says. But in Jackie’s case, “every time the nurse came in to do a procedure, or give medication, she’d explain to the mother, ‘This is why I’m doing it, this is exactly what I’m looking for.’ On top of that, the mother was included in medical rounds, so she got to hear directly from the doctor every day.”

Not only was Jackie’s life likely saved, but her care providers’ jobs were made easier, too. Indeed, the pediatric community is increasingly recognizing the mutual benefits of involving the family in a patient’s care. Just 25 years ago, the predominant philosophy was, “We know what’s best for your child, leave him with us, come back for him on Sunday,” says Bruce Komiske, author of Designing the World’s Best: Children’s Hospitals, and chief of new hospital design and construction at the soon-to-open Ann & Robert H. Lurie Children’s Hospital of Chicago.

“That’s been blown up now,” he adds. “There’s been a lot of research showing that kids actually do better when the parents are there, and engaged. That’s leading to a lot of changes.”

Cue the archival footage. To appreciate where the country’s 250-plus children’s hospitals are heading, it’s impossible not to marvel at where they’ve been. Nobody who’s glimpsed the grim images of those bleak, early-20th-century sanatoriums forgets them, or the haunting inkling of what it was like to be a child in the era of incurable illness. (Inkling distilled: not so great.) But those first hospitals also had something right. By 1885, 10 children’s hospitals had opened in the United States and Canada, and their doctors had put their fingers on the cornerstone of pediatric medicine: Children aren’t just little adults. With their differently functioning organs and immune systems and metabolisms, they’re more akin to their own species.

In the years ahead, children’s hospitals granted children a medical space — but it was one that didn’t always leave a place for families in the equation. Enter Bev Johnson. As president and CEO of the influential Institute for Family-Centered Care, a national organization based in the D.C. area, she works to establish that a patient’s family is essential to a cost-efficient, safe, high-quality health-care system. From having nurses do change-of-shift reports alongside families, to forming a rapid-response team that parents can call, Johnson’s organization is leading the push to open up children’s hospitals.

“The system has sometimes been very paternalistic. We’ve done things to and for patients, rather than with patients,” she says. “Now we know, especially with the increase in chronic conditions, that patients have to be involved in their own care. For a child with diabetes, very little time managing the diabetes actually happens in the hospital. So we have to work with patients and families so they see they’re a key player in their own health care.”

So how does that happen, exactly? To be sure, involving parents doesn’t mean having mom roll up her sleeves to re-set a broken arm. The thrust of the movement tends to come down to shifts in communication styles and decision-making processes. If that sounds like a somewhat nebulous undertaking, Johnson says it’s happening through formalized processes at a growing number of hospitals — having parents serve on patient safety committees, for example, or training medical students and residents about communicating effectively with families.

At Packard Children’s, Wayman and her department deploy a multilevel approach to delivering family-centered care — but a key part of the program is staff education. New nurses get a two-hour introduction to family-centered care, and later participate in trainings and simulations. In addition, Wayman’s team works with various medical services, such as liver transplant and neonatology, to determine more in-depth changes that could be made.

Then there’s Wayman’s health-care provider champion program. Rather than spread the good word entirely by herself, she realized family-centered care could be preached more effectively by enthusiasts already working throughout the hospital. So she assembled a cast of advocates, from physicians to nursing directors to patient safety staff. Now numbering about 140, the team’s members meet with her periodically — in groups or individually — discuss improvements that can be made in their departments, then fan out to bring the message to their direct colleagues. They might deliver presentations on what family-centered care is, or how it’s being implemented elsewhere. In other cases, they consult on more intimate levels — a nurse, for example, explaining how a specific bedside conversation might have been improved with some family-centered care techniques.

Meanwhile, at Packard Children’s and elsewhere, families are invited to participate in a growing portion of physician rounds, thereby opening up the conversation that happens at the bedside. As Johnson puts it, the parents are the people who know the patient best, and increasingly practitioners are seeing the value in that.

“Let’s say the child has asthma. The doctor may say we think he should be on a certain medication, and the parent may say, ‘That’s hard with his schedule — he wants to be on swim team, which is also healthy for him — could we try X?’ So there’s a negotiation now, where in the past that wouldn’t happen,” Johnson says.

Among the more prominent changes spurred by the international family-centered care movement: the single-patient room. Long considered a luxury, this increasingly standard feature has gradually revealed itself to be the healthiest, and most cost-effective, way to provide care, resulting in lower infection rates and higher patient satisfaction. Packard Children’s has some single-patient rooms, but the expansion planned to be completed by 2016 features them exclusively.

“There was talk long ago that we can’t afford private rooms,” says George Tingwald, MD, director of medical planning for the Packard Children’s expansion. “But what’s been proven is that the cost of operations is actually lower than the cost of operations for a multipatient room. In a relatively short time they pay for themselves.”

As a principal at Array Healthcare Facilities Solution, a Pennsylvania-based design firm behind several high-profile children’s hospital expansions and renovations, Patricia Malick has seen the family-centered care philosophy make sense down to the level of room design.

“It’s about listening to kids more. So people are more cognizant of how scary it is for them to hear a child two doors down screaming in pain,” she says. “There’s growing interest in treating the room as a safe haven, and having exam space out on the floor so it doesn’t happen in the room.”

The family-centered care movement isn’t just a literal inclusion of mom and dad in the care process. It’s part of a larger effort to better understand how a child is best nurtured, and to better incorporate the components of his or her daily life. This starts with loved ones and runs all the way to decor. Just 15 years ago, Disneyesque cartoons were de rigueur in patient rooms: a compensation, perhaps, for a previous era’s dreary aesthetic. But Tingwald says Mickey and Goofy often came no closer to what kids actually craved.

“A lot of the decor in these hospitals was very frenetic, very bright colors. A lot of activity rather than calming influences,” he says. “It was what adults would think kids want.”

With his MD degree and AIA designation as a professional architect, Tingwald personifies the growing interest in “evidence-based design” — a movement intent on using research to shape the way hospitals are built. Recently he was discussing Packard’s expansion project with Elizabeth Chaney, director of real estate planning and development.

“It turns out what kids respond to best are everyday things: being able to see the sun, nature, birds,” Chaney says. “Kids are smart. You can’t distract them from the fact that they’re in a hospital. What they want in there is as much of their normal life as possible.”

“It’s about listening to kids more.”

Parents aren’t just beneficiaries of this more family-friendly environment. At many hospitals across the country, they’re instrumental in creating it, as with Packard’s family partners program, a group of 20 trained parents with children who received care at the hospital, and who now advise on policy issues pertaining to a family’s experience at the hospital. The hospital often includes well-trained parents as members of ongoing hospital committees.

These parents are available each month to any staff member as an instant focus group, providing the family perspective on hand hygiene, IV line insertion, medication list accuracy, as well as the new pediatric hospital under construction.

“We have parents working with the board-level patient safety committee,” Wayman says. “Other parents give their input to the architects of the new hospital regarding the patient experience: What is the experience as you enter the lobby, when you move to the new gardens, when you are discharged home. The decisions made at the operations level of care have a downstream effect at the bedside.” And indeed the Packard expansion will have separate entrances for women coming to give birth, and for sick children — something that parents say will ease anxiety among women in labor.

On a more granular level, Wayman adds, it’s proven beneficial to involve parents on communication efforts, such as spreading the virtues of good hand-washing habits within the hospital. “We helped bring down the infection rate in one of our units, and part of the reason was our campaign urging parents of inpatients to wash their hands,” she says.

Hospitals are constantly evolving on a variety of levels — new technology, new surgery techniques and new administrative policies, spread out over multiple subspecialties. But to assess how care will be administered in the years ahead, the shift toward families would seem to have the broadest and deepest implications. And while family-centered care began as a movement within pediatrics, it has spread to adult services as well, especially in the care of the elderly. The institutions leading this movement aren’t just reshaping policies across the board — they’re reappraising basic assumptions about how a hospital works best.

Trace the evolution of the children’s hospital and you’ll trace the evolution of how society sees children, too. Debra Monzack’s job at Packard is a testament to this.

“When I started, I was the ‘play lady.’ The thinking was, let’s just keep the kids busy and distracted,” says Monzack, a child-life specialist for 34 years. “Now the focus is really on the psychological preparation for a child’s visit and supporting the child’s continued development. The whole thing is looked at very differently.”

Packard Children’s child-life program is one of many across the country helping families — patients, parents and, increasingly, siblings — negotiate the strains of hospitalization. At times this means preparing kids for a frightening procedure; just as often, it means preparing parents, and helping them nurture their child as they would outside the hospital.

“The idea is to bring the outside world into the hospital with long-term-care patients. Otherwise you take away the joyful part of everyday life. And the benefits are clear. We see kids cope better, and recover faster, and many times they’re not as fearful about coming to the hospital again in the future,” Monzack says.

With so many virtues, does anyone oppose family-centered care? Direct opposition doesn’t materialize as often as something more nebulous — that paternalism Bev Johnson describes.

“It’s a cultural shift away from the expert model, and sometimes there are people who feel a little uncomfortable about it,” Wayman says. “At first blush, it’s like, ‘What do you mean a parent’s going to tell me what to do?’ But soon they realize it’s a partnership. And in fact shared decision-making is something many doctors and nurses already do.”

Taken individually, many family-centered care improvements are easily accomplished. For example, Wayman says at Packard Children’s parents will soon receive a printout of what’s happening with their child in the neonatal intensive care unit every day. And she anticipates that when the hospital’s expansion is complete, rooms will include computers so family members can easily keep in touch with friends and relatives. Being able to read an update or conveniently communicate with a loved one might not seem like much, but such improvements provide a sense of control during an unfamiliar and frightening experience. Few assets could be more valuable for parents of ill children, and as a result, the parents are better prepared to provide the support their kids need.

Wayman sees family-centered care as a new approach, to be sure, but also a return to a forgotten mode. The era of house calls and small-town medicine didn’t offer much in the way of medical sophistication, but she says it sometimes had one thing going for it: more dialogue.

“Children’s hospitals have become such an incredibly high-tech environment, such a fast-paced environment. Now we’re starting to foster family/health-care provider conversations again, and with a higher quality of exchange,” Wayman says. “After all, it’s a scary thing when your child arrives at the hospital. You don’t know the routine, the medication, what you do when you get home. It’s in everybody’s interest to change that.”

 

Contact Chris Colin