If you can find a way to give [parents] back a piece of their child's life that they can own, that makes everyone much, much happier.
Leslie Lehmann, MD
From Children's News: Satisfaction Guaranteed
The act of walking into Children’s Hospital Cancer Center’s (DF/CHCC) Pediatric Stem Cell Transplantation Program is a visible reminder of the fragile condition of the patients they treat. A set of outer double doors opens onto an airlock system where families and clinicians need to scrub up before a second set of doors opens, allowing them onto the unit. When it comes to germs, extraordinary precautions are justified. The program specializes in bone marrow and stem cell transplantation to treat diseases impacting the immune and blood-forming systems—leukemia, lymphomas, immunologic and hematologic disorders—as well as solid tumors, like neuroblastoma.
The combination of a restrictive environment and often frightening diagnoses can be overwhelming for families. “We have to control so much of our patients’ worlds—do this, don’t do that, these are the restrictions, these are the rules,” says the program’s clinical director, Leslie Lehmann, MD. “Some parents are okay with that, but for some, each thing that they’re not allowed to decide about their child is like a knife in their heart.”
In an effort to make their hospital stay as easy as possible for the program’s families, Lehmann and her team have enacted an innovative solution. Each week, she and Barbara Cuccovia, RN, BSN, CPON, the unit’s head nurse, conduct Patient Satisfaction Rounds, visiting with each family, and asking directly: What can we be doing better? In the three years they’ve been doing these rounds, significant changes have occurred.
On a creature comfort level, they’ve added a washer and dryer to the unit—a major undertaking that required weeks of documented requests from patients in order to justify the logistical nightmare of rerouting plumbing through the center of the hospital. They’ve also added a blanket warmer, mini-fridges in each room, and remodeled the communal family kitchen.
Transition of care has also seen improvements. Transplant is multidisciplinary by nature, and other departments, such as the Intensive Care Unit, Radiology or the Emergency Department, share in the care these families receive. Because the Transplant Program has such strict hygiene guidelines, standard hospital hygiene may not seem like enough to some families. “We require a 15-second scrub, but another department may only require a five-second scrub,” says Lehmann. “Right or wrong, it makes some parents anxious.” Based on feedback from families, Lehmann has met with leadership in other departments to ensure that the program’s standards are consistently maintained across department lines.
Patient Satisfaction Rounds have attracted the attention of non-medical services as well—including groups outside of Children’s. Andrew Richards, co-executive director of the Ronald McDonald House—where many of the program’s patients are discharged—joins Lehmann on her rounds at least once a month, in order to get to know the families in advance. Children’s Head Chef Jim Boyd visits the unit, meets with parents and patients, and understands their special dietary needs. “Our kids are hungry maybe one second a day,” says Lehmann. “If they call down to Food Services, and it takes two hours for the food to get here, we’ve missed our window.”
Response time has also improved when it comes to call lights. Every few weeks, Lehmann found that she was encountering complaints from parents whose children had suffered nosebleeds, called for a nurse, and felt like it took too long for help to arrive. “At first, I just wanted to assure the parents that nosebleeds aren’t dangerous,” says Lehman. “But after hearing parents recount feeling trapped in a room with blood everywhere, we could imagine how petrifying it is.” The key, says Lehmann, is making sure you’re attuned to psychological distress, as well as physical danger. “
As a clinician, you feel so responsible—like you have to weigh in on every single piece of the puzzle,” says Lehmann. “The art is figuring out which pieces you don’t need to weigh in on.”
There are many areas where Lehmann feels parents can, and should, have a say—such as when blood transfusions occur. Standard practice used to dictate that blood transfusions were best given at 2 a.m. Ideally, nurses are less busy at night, and the medications many patients receive during transfusions make them sleepy anyway. Patient Satisfaction Rounds revealed that that doesn’t work for most of the program’s families. Parents reported that their children woke up groggy after nighttime transfusions, or that the nighttime schedule resulted in their kids waking up when their parents weren’t there. “There’s no reason those kids can’t get their transfusions at 2:00 in the afternoon,” says Lehmann. “It’s not a big deal for us to switch it, but it’s a big deal for the parents that they get a say in making the switch.”
Even before the weekly rounds started, the program had a history of making major changes based on family feedback. When Lehmann first joined the team, parents were choosing other transplant centers due to a policy at Children’s prohibiting parents from staying the night. Realizing there was no safety or health reason why parents couldn’t stay with their children 24/7, beds were installed in every room, and the policy was changed.
In the three years since Lehmann’s team started conducting Patient Satisfaction Rounds, not a single family has reported a complaint to Patient/Family Relations. Lehmann’s team handles all issues at the local level, getting back to families within a week with results. Lehmann says it’s a simple matter of listening, making whatever intervention you can realistically make, then closing the loop by getting back to the family.
“Go to them instead of making them come to you,” she says. “If you wait until they have an active problem, you’ve already lost some of their confidence. But, if you can find a way to give them back a piece of their child’s life that they can own, that makes everyone much, much happier.”