By Matt Skoufalos
Regaled with tales of nursing by her grandmother, who worked at Columbia Presbyterian Hospital, Massachusetts native Sarah Wolf was headed for a career in medicine as early as high school.
In college, Wolf concentrated on women’s health issues until her final undergraduate year, when she took on rotations in a 12-bed pediatric intensive care unit (PICU) at New York University Medical Center. Exposed to the acute nature of the PICU setting, she realized the intersection of technology and pediatric critical care more closely matched her interests.
“Medicine and the human body was something that I was always interested in,” Wolf said. “That kind of science was what I was always drawn to. It seemed a natural fit for my personality. I decided I would rather do that upon graduation rather than women’s health.”
Amid the intensity of the work, Wolf also found her emotional limits tested frequently. In the beginning, she remembers “a lot of tears and taking a lot of the work home with me emotionally,” but she kept up the assignment for about five years.
“We were all young, we were all night shift, and we were able to support each other through that,” she said. “I would have patients who were chronically ill for years, and would then pass away, or a kid who was in a motor vehicle accident who’s paralyzed from the neck down. It was trying.”
In addition to the emotional fatigue, Wolf also acknowledged the task-oriented nature of the work, a tangle of keeping up with “so many medications, treatments, machines, and monitors” in which the delivery of care can sometimes be lost.
“You’re there not to work a shift, but to take care of a child,” Wolf said. “A lot of my patients were originally in the neonatal ICU, born prematurely, and have chronic lung disease. Most of them end up weaning off the ventilator and having the tracheostomy removed. That’s the best. But there is a population that just will never come off the support.”
Today, Wolf is a case manager in the progressive care unit at Children’s Hospital of Philadelphia (CHOP). Relying on her PICU experience, she specializes in preparing families to take technology-dependent children home from the hospital. Although her current assignment requires a depth of social work and planning skills, Wolf leans on a highly technical nursing background in guiding home-based care for vulnerable patients and their families.
That assignment, which involves visiting with families who face significant health and income disparities in the Philadelphia area, was “eye-opening” from the beginning, she said.
“It’s primarily Medicaid patients living in difficult situations with children who ware medically fragile,” Wolf said. “Some families were extremely appreciative to have someone coming and talking to them, and some families were busy and didn’t want me to come in for that long.”
“To see what people go through every day – a lot of poverty, a lot of underserved populations – I was able to see what the difficulties were in the home,” she said. “We do a lot of validating and speaking back [to parents]; they know we’re understanding them, and they’re being heard.”
Wolf’s job is complicated by a number of factors, many of them institutional. Reimbursement rates for the services she delivers are dwindling, a result of Medicaid and insurance cutbacks, while physicians insist that the patients they’re discharging receive a quality of care at home comparable to that which they get in the hospital setting. Patients are released with 24-hour at-home nursing care for the first two weeks after discharge; that decreases to 16 hours a day, which makes staffing a challenge. Lesser rates of pay for home care versus hospital shifts also affects the work, as does the challenge of finding approvals for high-tech care.
“It’s getting difficult to find home care nurses to take care of technology-dependent kids, and the kids we’re sending home are sicker than they were five years ago,” Wolf said. “Every year, my manager is hiring more people because there’s so much need to maneuver what is needed, how this patient can access it, and who’s going to pay for it. We have to get pretty creative. There’s a monthly meeting to discuss those patients [denied reimbursement] to see if there’s anything that can be done to facilitate their discharge, or facilitate to a lower level of care if they’re medically stable.”
Wolf’s assignment is an evolving one, and it becomes increasingly difficult year after year, she said. Wolf has found her interest in public health issues deepening as her expertise in technology-dependent discharges continues to expand. She believes that a master’s in public health might be on her horizon, as she considers a shift into policy work as a long-term goal. For now, Wolf continues to support her patients and coworkers as they deliver a high quality of care in a mentally demanding environment.
“Having two kids myself now, I don’t think I could go back to PICU nursing,” Wolf said. “We see sick children from all over; we see things that people in medicine will have never seen. No matter how small the intervention we’re doing, it’s a big deal to parents because it’s their child. All of it is scary.”
“Families are sometimes in my unit for a year or more, and they have a lot of emotional problems that they need support with,” she said. “When it seems like they’re heading home, it’s still a long road ahead, even though the kids are doing better medically than when they were in the ICU.”