When your child is hospitalized with a life-threatening illness, the rest of the world ceases to exist. At least until reality begins to creep back in.
There’s paperwork to be signed, insurance companies to be called, childcare arrangements to be made for the sick child’s siblings, and bosses who must be briefed.
A woman named Laura experienced all this firsthand last year when her 4-year-old son was diagnosed with acute lymphoblastic leukemia, a type of cancer that attacks the blood and bone marrow. For weeks, the little boy hadn’t been feeling well. He had night sweats. He wasn’t acting like himself. But doctors couldn’t find a problem. Then came the petechiae, an alarming splattering of blood spots on his face and eyes.
“Two days later, we had an official diagnosis,” Laura told me. “It was devastating.”
Devastating and disorienting. “You go through so many major changes and upheaval in a matter of hours, you can’t think clearly,” she said. “That’s where Megan comes in.”
Megan was the pediatric social worker assigned to work with Laura and her family. Megan was in the room when doctors first described the boy’s diagnosis. She successfully helped the family push back against their insurance company when they were told treatment at Tufts, in Boston, wouldn’t be covered. And because the family’s entire extended support system was in Florida, not in Boston where they lived, Megan wrote a letter explaining the diagnosis to Laura’s mother’s boss. The letter explained why Laura’s mom needed to take time off from work to care for Laura’s 18-month-old brother while Laura and her husband focused on their sick child. Megan guided the family through complicated paperwork and connected them with financial counselors. She checked on the family every day—sometimes multiple times a day—answering questions, coordinating resources, and reassuring them that everything would be okay.
“Megan is there from the very beginning, so immediately there is a cheerful face. She has access to wonderful resources. Any time we’re faced with an obstacle, she goes above and beyond to take care of it,” Laura said. “Megan’s role is vital.”
The family never sought care at a military facility; and it was through support from the military (and military insurance) that they were able to get such excellent care from a civilian hospital, Laura says. At military hospitals, people like Megan are much rarer. Tufts alone has six full-time pediatric social workers. According to numbers provided by the Defense Department, there are only 7 in the entire military hospital system—a network of more than 50 hospitals serving nearly 2 million children. (The Defense Department told me there are 15 full-time pediatric social workers at Navy, Army, and Air Force hospitals, with more than half of them based in Japan, not the United States.) The military health system has an annual budget of $50 billion, so why does it spend so little on full-time pediatric social workers for hospitalized babies and children?
The military’s approach to pediatric social work represents a stark difference compared with the civilian world, where leading children’s hospitals often exceed basic standards for staffing. The Society for Social Work Leadership in Health Care recommends one full-time staffer for every 25 general pediatrics beds, one for each 20 pediatric intensive-care beds; and one for every 15 neonatal intensive-care beds.
To put those numbers in perspective, Children’s Hospital of Philadelphia, with a 95-bed neonatal intensive-care unit, has 175 full-time pediatric social workers. Boston Children’s has 24 beds in its neonatal intensive care unit, and employs 150 full-time pediatric social workers. Walter Reed National Military Medical Center has 25 beds in its neonatal intensive-care unit and three full-time pediatric social workers. The Defense Department doesn’t count Walter Reed in its tally of pediatric social workers at military hospitals because Walter Reed isn’t considered an Army or Navy hospital, but rather a part of the Defense Health Agency, a spokesman told me. Yet the Defense Department’s overall numbers suggest that several military hospitals don’t have any full-time pediatric social workers on-site.
The caveat about the military’s meager numbers, a Defense Department spokesman told me, is that families can be referred to offsite social workers—still fully covered by military insurance—if their child is being treated at a hospital that doesn’t have a full-time social worker on staff. But that sort of arrangement doesn’t begin to provide the level of care that families are getting at the nation’s best civilian centers. “There is no way that I would reach out to an outside-of-the-hospital social worker,” Laura told me. “You don’t have time for that. Social workers are important from Day One; a familiar face who is there two or three times a day, and if you need her you can page her and she comes right away.”
Officials with the Army, Navy, Air Force, and Department of Defense all declined multiple interview requests related to the staffing of pediatric social workers, but public documents help reveal how such positions are viewed within the larger structure of the military health system. The Army, for instance, has hired dozens of pediatric social workers in recent years, under the umbrella of “behavioral health,” a separate system of care not integrated with the social workers in hospitals. Instead of focusing on hospitals, these social workers are assigned to on-post schools and within specialty behavioral health clinics.
“During the last 13 years, the stresses experienced by military youth have intensified, associated with parental combat deployments in support of the wars in Iraq and Afghanistan,” the authors of a 2015 NIH report wrote. When a parent is deployed, the risk of worrisome behavioral problems goes up for kids of all ages—including increased alcohol and drug use among middler schoolers and high schoolers; increased feelings of sadness, depression, suicidal ideation; increased fighting; and increased weapons-carrying.
Given the need for outpatient behavioral-health resources among military children and the spate of serious quality problems at military hospitals in recent years, it’s perhaps not surprising that a dearth of pediatric social workers in the hospital setting hasn’t been a focal point. Two years ago, a mandated review of the military health-care system found a pattern of disastrous errors and inconsistencies at several major military hospitals. A New York Times investigation published in 2014 found the military system had “consistently higher than expected rates of harm and complications” in surgery and maternity care. In a separate analysis, the American College of Surgeons found higher than expected rates of complications at half of the networks’s largest military hospitals. Another Pentagon study found babies born at military hospitals were twice as likely to be injured during delivery compared with newborns nationwide.
In the civilian world, pediatric social workers are considered critical members of hospital care teams. In addition to helping families navigate the daunting days, weeks, and months that follow a child’s diagnosis or admittance to the hospital, social workers coordinate with every other member of the medical team. They’re able to spend more time with families than doctors or nurses, which is part of what enables them to screen families for financial hardships—which can be a key indicator of a child’s likelihood of surviving an serious illness. The involvement of social workers has also been shown to help prevent re-hospitalizations. In other words, social workers don’t just help support a family, emotionally; they often improve a child’s physical wellness. The staffing approach to pediatric social workers in the military would be “unimaginable” in the civilian world, says Allison Scobie-Carroll, the director of social work at Boston Children’s Hospital.
“For the families without access to social workers, you’re seeing longer hospitalizations, more unplanned readmissions, and higher risks associated with unaddressed domestic violence and child protective health issues,” Scobie-Carroll told me. “If we don’t take care of the adults who are caring for children, their children will be negatively affected later—if not immediately.”
The University of Southern California recently started a social-work program specifically designed for people who wanted to help members of the military and their families.
“At a military hospital, the primary focus is going to be on the military service member and the mission,” said Eugenia Weiss, professor at USC’s School of Social Work. “The old adage was, ‘If we wanted you to have a family, we’d issue you one.’ I think that’s changing dramatically because we’re seeing the family has a huge impact on the service member and the mission—but there’s still the idea that [a military hospital is] there to serve the service member so they can get back to the front lines.” One psychiatrist who works in the Army’s Child, Adolescent and Family Behavioral Health System told me that there have been “dramatic” cultural changes, and that “the Army recognizes that it’s a family business,” but said he wasn’t authorized to speak on the record.
There are also misconceptions about what social workers do, which could influence how non-medical commanders think about staffing. Many people associate social workers with matters like child abuse and neglect, not realizing that social workers are widely considered “an essential part of the care team” for any sick child in a hospital setting, says Rachel Biblow, the senior director of Patient and Family Services at the Children’s Hospital of Philadelphia. At CHOP, which is home to the oldest department of pediatric social work in the country, the family of every patient who’s admitted to the intensive-care unit is automatically assigned a social worker. But pediatric social workers are just as crucial in more minor incidents, like a child who comes to the hospital because she’s having an asthma attack, Biblow says. A social worker might be the one to ask whether the family has noticed any household asthma triggers, or if their landlord is doing enough to prevent irritants like mold, dust, and smoke around their home. While doctors and nurses focus on making sure a sick child is medically okay, social workers help piece together strategies for keeping them healthy once they go home.
“You also really need somebody by your side to help you cope with what is going on,” Biblow told me. “Can you make it to the follow-up visit? Do you even have transportation? Figuring out those logistics—that’s how people have success outside the hospital. It’s not an optional piece of care. It’s really a critical piece.”
For Laura and her family, having a dedicated social worker has been “vital,” she told me. A year after his diagnosis, Laura’s son is doing “wonderfully,” she said, but there’s a long road ahead. The little boy is in what’s known as the maintenance phase of treatment—and still has more than two years to go. Through it all, Megan, the family’s social worker, has been a “gentle, non-intrusive, calm, warm, friendly” guide.
“I can’t imagine going through this without a social worker,” Laura said. “It sounds so simple but having somebody who can help you vent and work through whatever comes up. They can just give you a hug and say, ‘It’s okay. I can help you. We will figure this out.’”
Editor’s Note: This story has been updated to clarify that Laura’s family did not seek treatment from a military hospital. Identifying names have been removed to protect the family’s privacy.