The scene: Resident teaching rounds, Children's Hospital, on a cold Boston February morning.
The topic: Communication and quality-of-life issues for children with significant developmental disabilities.
The mood: Very, very uncomfortable. But that's the point.
It started out just like any presentation. Guest speakers Diann Sespico, director of education, and Carolyn LaBrack, an early childhood teacher who specializes in intensive special education, both from Children's Hospital affiliate Children's Extended Care Center, a pediatric nursing home in Groton, Mass., were well into their talk. The group of about 50 residents, nurses, and physicians were listening attentively. Then LaBrack got a little weird on them.
“Everybody stand up,” she commanded. They shuffled to their feet.
“Now touch your head,” she said. “Touch your shoulders. Touch your toes.” What the heck?
“Now everyone sit down and hold hands for 30 seconds.” The audience complied, looked more uncomfortable by the second. Finally, they were allowed to drop their neighbor's hands. The sighs of relief were audible.
“When I asked them what the exercise felt like to them, they said, ‘We had no idea why you were making us do this,’” LaBrack recalls. “Their next comment was, ‘We had no idea what was coming next.’ I couldn't have asked for better responses — that's exactly how a child with disabilities feels when she's hauled out of her sickbed, rushed away in an ambulance, and pinpricked and prodded by different doctors. It is so important that doctors be aware that this child with disabilities is just as sensitive to what's going on around her as they would be — maybe even more so, because these children tend to be highly attuned to body language. Simply telling them what's going on and keeping your tone comforting can make a big difference,” she says.
“Just because a child is nonverbal doesn't mean he can't communicate,” she stresses. “Medical staff need to be aware of what the child is trying to say, to look at facial expressions and body postures to see if he's crying out of pain or frustration. They also need to be able to assess whether a child's self-abusive behavior, such as head-banging, is just a behavior, or if it is a form of communication. Sometimes, that's the only way these kids can express what they're feeling, and ignoring it will just escalate the behavior.”
While a bit unorthodox for a usual hospital rounds presentation, LaBrack's exercise in discomfiture was just one of the techniques she and Sespico used to really bring home how important communication is to these children's quality of life.
Case Study: Crawligator
“The doctors and nurses usually see these children only in the hospital or when they're very ill,” says Sespico. “They may have no idea of what these children are like, or are capable of, in their daily lives.”
After talking with CECC staffers about ways they could help nurses and physicians understand these kids better, Emily Davidson, MD, a physician who works at both Children's Hospital and CECC, decided to develop a program in conjunction with the CECC Ethics Committee that would bring home this understanding in a way that would resonate with hospital personnel. Part of Davidson's role was to help Sespico and LaBrack understand the educational context physicians and residents are accustomed to. As Davidson says, “It was a matter of helping one world come into another world.”
The resident teaching rounds usually revolve around medical issues based on case studies, so Davidson provided the medical histories of the two children profiled at the presentation (for which physician attendees could get CME credit). Sespico and LaBrack then showed supporting pictures of the children doing things they do in their daily lives, like working a switch, making arts and crafts, interacting with people, and learning about everything from Mardi Gras to the Atlantic Ocean. “What these kids look like on paper and what they really can do isn't always obvious, especially when they're only in the hospital for a short-term stay,” says Sespico. Children at CECC each have their own “photo communication books,” portions of which were projected on screen for the attending medical staff.
“When they saw the pictures on the screen of one little girl — who has had 20 major surgical procedures performed on her brain and lives with cerebral palsy, cortical vision impairments, and a hyperactive gag reflex — the doctors who had worked with her in the past couldn't believe it was the same child,” says LaBrack.
The girl's mother also found the photo communication books to be a big eye-opener for her child's physicians. “One doctor who had known her since birth was totally taken aback when he saw what she could do in her usual environment — using a ‘crawligator’ [a device to facilitate mobility] and participating in cooking class. He had never realized what she could do until that moment,” the child's mother says.
The handouts LaBrack and Sespico provided reinforced their points: a communication interaction checklist, a list of ways to identify nonverbal communication, and general communication guidelines. LaBrack says one of the most meaningful was a sheet headed “Hear Us” (see sidebar for an excerpt).
But how important is it, really, to educate hospital staff on a touchy-feely topic like communicating with nonverbal children? Absolutely vital, according to Sespico. “Medical care has advanced so much: Children who would have died 10 years ago now can live. We have a responsibility to ensure that their quality of life is the best possible.” Adds LaBrack, “It's all about habilitation, as opposed to rehabilitation.”
While the topic traditionally hasn't been included in medical education, Davidson says it's an area that residents want — and need — to learn more about. “Especially in pediatrics, there's lots of interest in psychosocial issues,” she says. With the CME community under increasing pressure to provide education that is relevant and improves patient care, these types of presentations may become more prevalent in both hospital and external CME.
They will at Children's Hospital, anyway. Davidson currently is working on bringing Sespico and LaBrack back for a reprise. In the meantime, despite a few awkward moments — or perhaps because of them — a group of residents and other care providers have learned how to listen to the special needs of these special kids.
For more information, contact Diann Sespico, director of education, CECC, 22 Hillside Avenue, Groton, MA 01450; (978) 448-3388.
We are limited by illness or injury, and in many ways, we are locked inside our bodies.
We hear, think, and feel.
We are not “living vegetables.”
We are frightened by conversations that relate the latest gossip about our care.
We feel shame at having our bodies exposed for all to see.
But we also feel the joy that comes from the gentle touch of a person who provides good care.
We appreciate the kindness of words spoken directly to us and not about us.
We are comforted when told about procedures before they are to be begun.
Most of all, we are thankful to you who give us the attention, respect, and care you would wish for yourself and your own children.