Reprinted with permission.  Published in Spring/Summer 2010 issue of Hopkins Medicine Magazine.  

By Mat Edelson

The mother stands outside her son’s hospital room, exhaustion etched on her face. For over a week, her athletic teenager’s body has been failing, stricken suddenly by a mysterious lung ailment that doctors have yet to diagnose. Her solace, if there is any, is moments like these. A young Hopkins resident has just approached her and asked if she’d like to join the team of a half-dozen physicians rounding on her child’s case. She gratefully accepts the invitation. 

For the next 10 minutes, as the resident’s colleagues listen intently, nearly all the information he delivers is patiently aimed at the boy’s mother, translated as necessary from doc-talk into people-speak. With each word, the mother’s fear is replaced with understanding of what’s being done, and by whom, and when. The pneumonia? Still a problem. The pneumothorax, the collapsed lung? Under control—a chest tube is seeing to that. 

There is another dilemma, one that the mother certainly wouldn’t have been exposed to in the days before these family-centered rounds. To get to the root cause of the illness, the doctors must have more fluid samples from her son’s lung for analysis. Yet they’re hesitant to ask the boy to cough, afraid that it will cause him pain and spasm. 

“He’s willing to make a valiant effort,” says the mother. 

The doctors nod, then begin to talk about more invasive means of getting what they need. As they are deep in collegial conversation, the mother slips back into the room…only to come out a minute later holding a small, sealed vial containing some brownish fluid. “Will this do?” she asks the surprised resident. 

He takes the vial gently, holds it up to the light, and smiles.“Not too shabby!” he says. 

There was a time (and in many places that time is still now) when allowing patients and their loved ones access to the inner workings of hospital decision making would have been considered anathema, as palatable as letting an opponent see your hole cards in a high-stakes game of Texas Hold ’em. This “arm’s-length” attitude was one of the not-so-pleasant legacies of modern medicine, a by-product of an often patriarchal system of care in which patients and families were prompted to ask questions and voice concerns … only, please, not too many.

Over time, the net effect was plummeting patient satisfaction ratings and, perhaps more importantly, the sense that this communication breakdown was creating unnecessary stress, keeping patients in the hospital longer, and, for chronically ill patients, preventing them—and their families—from enjoying a better quality of life.

Enter the movement known as “family-centered care.” Egalitarian in scope, from a clinical perspective, “the philosophy of family-centered care is really about leveling the playing field,” says Marina Dackman, a veteran staff nurse in the Pediatric Intensive Care Unit (PICU) at Johns Hopkins Children’s Center. “The family knows their child, what the case issues are, what the child’s wishes are, what they want for their child’s future, plus how the disease has progressed and is working out in real life.

“The physicians come with their expertise of the disease process. Nurses … we come with knowing how to take care of sick kids. Family-centered care focuses on everyone working together to come to an outcome that’s really right for that particular patient.”

When Dackman says “everyone,” she isn’t exaggerating. Family-centered care is reaching into every corner of Hopkins Children’s, and parents are now an integral part of determining how the system is run. Since the “ Family and Patient-Centered Care” initiative was officially launched in 2007, a Family Advisory Council (FAC) has been established, family-centered rounds have been introduced, and a parent has been hired full time as a family liaison and administrative advisor—a daily reminder to staff that parents now have a voice at the table. The quality of hospital food, bedside sleeping arrangements (right down to the furniture), visiting hours … all are undergoing overhauls driven, in great measure, by input from parents.

At its heart, family-centered care is a formal recognition of what many health care professionals say they’ve been doing all along: including parents and their children in every step of their care, “It’s not exactly a new idea,” chuckles Kathleen Schwarz, director of the  Pediatric Liver Center. “In some ways the concept is as old as pediatric medicine.”

Perhaps, but the ad hoc nature of how family-centered care was practiced in hospitals across the country was, for many parents, like walking a precipice. One physician might take time with them, the next not so much. One nurse might let them sleep overnight next to their critically ill child; the next might say, sorry, the rules say you must leave now. Perhaps most frustrating, especially to parents of chronically ill children seeing multiple specialists, was the lack of coordination between physicians.

“We’d always get caught between the services,” says Bob Seipel, a parent now on the Family Advisory Council at Hopkins. His son, William, was born in Georgia in 1998 with severe cerebral palsy, which has required numerous hospitalizations at Hopkins over the years. “We had many times when neurology would come through and say, ‘Well … it doesn’t seem to be a neurological problem. Must be a pulmonary issue.’ And then pulmonary would come in and say, ‘Nope, pulmonary part looks fine. Must be neurology.’ There was not a process-driven interdepartmental communication mechanism. So we had to do it.”

At Hopkins Children’s, the sentinel event that shook the hospital to its core and lent momentum to the family-centered care movement was the tragic death of 18-month-old Josie King. In 2001, dehydration played a role in King’s death during her Hopkins Children’s hospitalization, despite attempts by her mother to warn staff that the little girl was desperately thirsty.

Such glaring miscommunication and systems failures made it clear that, when it came to patient care, improvements had to be made. The formal launch of institution-wide patient safety initiatives, the inclusion of hospitalists—all were important internal movements aimed at giving patients what they needed. But there was still an important element missing. “We’d get a bunch of hospital employees together, create a policy, and put it into place,” says Dawn Luzetsky, assistant director of pediatric nursing.  “But we made a lot of assumptions about what the families wanted.”

For example, several years ago, when sleep accommodations were built for parents on one unit, staff thought they were providing a welcome comfort. But parents quickly made it known that they were reluctant to use the beds for a reason that, in retrospect, makes perfect sense. Instead of beds, many preferred cushioned chairs they could pull right up to their child, to be able to hold them while they slept.

Under family-centered care, such ideas would come to the fore, and parents’ voices would be heard.

When it comes to being included in the inner sanctum of Johns Hopkins Medicine, it doesn’t get anymore inside than this. The hand-painted wood plate over the door of this room deep inside the Dome reads “Trustees.” Perhaps that’s appropriate, for the 38 volunteer parents and Hopkins staff who make up the Family Advisory Council are being entrusted, in measures large and small, with the future of the Hopkins Children’s. At these monthly gatherings on Wednesday nights, the group bandies about strategies, watches presentations, and meets with administrators. 

But one moment in each meeting is always unique. Sometime during the evening, the room will grow silent, the noshing of cookies will stop, and an air of compassion and connection will fill the room. They come into this setting bearing many titles—nurse, engineer, stay-at-home mom, entrepreneur—but as one primly dressed woman fidgets with her notes in her lap and clears her throat to tell her tale, the rest settle into the role that unites them and gives them purpose:parent of a child that has endured illness and adversity. 

And so she begins sharing her blind child’s story … 

The time for story sharing, a hallmark of the monthly meetings, is both reminder and affirmation, a verbal link to the pain that was and the possibilities that can be. And in their telling and retelling, the parents who volunteer with the Family Advisory Council serve perhaps their greatest purpose: to raise the consciousness of the staff and administrators they are often invited to speak before; to explain, in no uncertain terms, where Hopkins Children’s served their children and themselves well, and where it failed.

Robert Hicks’ son, Robert III, was born in 2006 with meconium aspiration, a condition in which a baby accidentally inhales amniotic fluid and feces into the lung during the birthing process. Hicks’ son developed potentially fatal persistent pulmonary hypertension in the days after, clinging to life only with the assistance of ECMO—Extracorporeal Membrane Oxygenation—a heart-lung bypass machine that is literally sewn into a newborn’s neck. While Hicks’ child was on ECMO at Hopkins, most of the ICU nurses, in a show of compassion, waived the existing rules and allowed Hicks and another family member to maintain a constant vigil around the tiny baby.

One night, that wasn’t the case: Hicks’ only visitor that evening, his mother, was asked not only to leave the unit, but the entire floor. “I’ll never forget my words,” says Hicks. “I was like, ‘Are you serious? My child is fighting for his life. I’m breaking apart. My mother’s here, nobody’s complaining. Why are you doing this!’ I couldn’t fathom it. It was heartbreaking. Wrong.”

Hicks, whose son went on to a full recovery, successfully lobbied to change the rules in the unit, and jumped on board as the Family Advisory Council’s first chair in 2007. He has since spoken to many staff and parents about his family’s experience. “Somebody, right now, is wondering if their child is going to see tomorrow,” he says. “Someone, right now, is watching their child on ECMO, not knowing what to ask, wondering if they can even touch their child. I want them to know I’ve walked that path, and I can help.”

For Ellicott City, Maryland, physician Anne Wills, a FAC co-chair, it’s painful to share recollections of her son’s all-too-short life; she lost Ryan to a congenital lung condition called pulmonary hypoplasia in 2001 when he was just over nine months old. The infant spent the last nine weeks of his life in the PICU. “Telling our story is not an easy thing for me to do. I only do it when asked,” says the Georgetown-trained Wills, who recalls one positive thing that stood out during her tragedy: the respect shown by Hopkins staff in the moments surrounding Ryan’s passing. They honored her family’s wishes to remove all the medical equipment so they could hold and later bathe him.

“For me, my dual perspective as a physician and a family member is why I speak, to educate doctors to what it’s like to be on the other side of the bed. As a physician, having crossed to the other side was probably my greatest education. It’s really very different being the parent of a sick child. It’s important to communicate how vulnerable a position that is. I try to create an awareness—mental images they can think about next time they’re in that patient’s room.”

At Hopkins Children’s, the Family Advisory Council is rapidly becoming an agent of serious institutional change. A group that started out with a handful of parents has grown to 16 parents and 22 Hopkins staffers, including nurses, child life specialists, physicians, administrators, and social workers. A typical monthly FAC meeting now includes visits from leaders of various operational arms, who come seeking input. A recent meeting brought food services staff. They had started offering a new room service-style menu, and wanted advice on how many hours a day they should operate.

Another meeting included a detailed update from senior administrator Ted Chambers on construction of Hopkins’ new Charlotte R. Bloomberg Children’s Center, set to open in January 2012. Chambers exhorted the FAC’s members to make their wishes known. “This is not just a new building, but a whole new way of operating,” he told those assembled. “That’s what you represent.”

The woman charged with co-chairing the advisory council (along with Marina Dackman and Anne Wills) is Pam Griffin. Despite what she considered to be outstanding care, Griffin lost her infant, Blake, to severe birth defects while he was being treated at Hopkins Children’s in 2006. The tragedy changed her life, and her career. A former graphic designer, the Frederick, Maryland, resident returned to school after Blake’s death to study psychology and social work for a career in family-centered care. She also interned for a year at Hopkins with Loretta Wall. Wall, recently retired, helped develop Hopkins Children’s family-centered care initiative. When money became available for Hopkins Children’s to hire a full-time parent liaison, Wall encouraged Griffin to go for it.

Griffin didn’t have to be asked twice. In addition to becoming the FAC’s co-chair, she sits on numerous committees, including patient education, palliative care, and pediatric management.

Griffin says she can see the culture changing around her. The introduction of family-centered rounds, the FAC’s ability to invite speakers to lecture to faculty, the unspoken administrative expectation that any service change that will affect parents and patients should come, at some point, before the FAC for their counsel … all are evidence of the group’s growing influence. Then there are the e-mails. When she first arrived at Hopkins, there was barely a trickle of correspondence. Now, there’s a flood. “The volume is going up!” says Griffin. “Without a doubt!!”

Nurse Sharon Stroebel has long practiced her own informal brand of family-centered care, staying after hours to lend an ear to a grieving father, bringing her husband’s special turkey and noodles to an ailing child who wanted that and nothing else … But this situation calls for more.
The little boy on CMSC-6 has sadness written all over his face, and who can blame him? Nothing in his life is normal. His body is rejecting the new liver he’s received and he’s been away from his best friend … his twin brother. The child looks forlornly out the window as the nurse follows his gaze at the falling snow. 

“He needs to play!” thinks Stroebel, and if the boy can’t go to the snow, she’ll bring the snow to him. It’s not a one woman (or one nurse) job. Not that long ago she would have felt inhibited at recruiting staff to join in what some might have considered a frivolous use of time. But that was then, and now her notions of healing and care have been allowed to expand. Grabbing everyone in sight, she proceeds to deliver buckets of snow to the room. Minutes later, the boy’s transplant surgeon answers a page to come to the room. He turns the corner, and SPLAT!! He’s hit by a barrage of snowballs launched by the giggling, mittened boy from behind an ersatz snow fort. 

“This is what little boys should be doing,” thinks Stroebel, who turns to look at the boy’s beaming mother …
… and sees tears of joy streaming down the woman’s face. 

Among health care veterans at Hopkins Children’s, the advent of family-centered care has meant the need to re-examine some long-held practices. One example is the nursing reports generated at the end of a shift—traditionally a private conversation between nurses usually held outside of patient/family earshot. In two different units, these “hand-off” chats are now occurring at the bedside, with parents present if they choose.

“It’s often thought by nurses that it’s easier to provide this transfer of information without the families being present,” says Shelley Baranowski, the new director of pediatric nursing, who previously helped implement a family-centered care initiative at Cincinnati Children’s Hospital. “Some of the resistance is that it feels different,” she says. “It isn’t what they may have done for the last 10 years as a nurse.”

Her message to nurses: Different can be better. “We’re seeing a lot of benefit of doing the report bedside,” says Baranowski. “It’s a wonderful opportunity for the oncoming nurse to be introduced to the family and the child, and there are a lot of safety elements involved: There can be some verification with the parent of what took place during the shift. And it’s a chance for the nurse to say to the parent, ‘Is there anything you want this nurse coming in to know?’”

A similar education is taking place among pediatric physicians here. Under the new family-centered rounds, physicians are expected to both teach residents and interns while also addressing their conversation, in lay language, to the parents present. That’s quite a juggling act. Janet Serwint, director of pediatric resident education, says her focus is making family-centered rounds the norm for newer residents, who are at a more malleable point in their careers.

“We’ve been doing family-centered rounds now for two years,” says Serwint. “Last year, it was a more challenging sell. There was more negotiation about it with the residents because they hadn’t done it as medical students. This year it’s really become more the expectation. They’ve seen it before, and it makes it much easier.” Residents are realizing that rounding this way actually saves time in the long run, as they’re able to address many logistical and diagnostic issues in the moment, versus a flurry of follow-up later.

Family-centered rounds are slowly catching on, says Serwint. She anticipates that, as the logistics are worked out—notably having all the members of teams coordinate schedules so they can be available at the same time of day, allowing parents to plan accordingly—the rounds will spread to include specialists and their teams at Hopkins Children’s.

“We want to make sure we’re doing the rounds right, so we’re still looking at them as a pilot,” says Serwint. “There are a lot of specialists interested, so I imagine the rounds will extend.”

For many veteran pediatricians, says Serwint, the wisdom of actively including families in the process isn’t necessarily what they were taught. But it is something they’ve come to value. “When I trained, you told people what needed to happen. And people, whether they agreed or not, would generally follow those recommendations,” says Serwint. “But what we’ve learned is that families are the experts for their children.