Born of Hope
What's new in neonatal intensive care? Families.
"Being a meaningful part of the health care team allows patients and families to feel some control in a world that can seem uncontrollable."
PARENTAL JOY TURNS TO FEAR when a newborn loved one transfers to a Neonatal Intensive Care Unit (NICU). What's wrong? How sick is she? What can we do? When can we see her?
Medicine once stood like a brick wall between a family and their sick newborn. But after all, the pros knew best. Parents were asked to step aside, left to drown in worry, feeling desperately out of touch, their world upended and reeling.
That old approach to some of the most delicate, challenging and emotionally wrenching medical care decisions no longer makes sense. A movement to bring families to the forefront honors their role and helps them to cope with the extreme situations in which they find themselves.
In the NICU, where dozens of babies sleep or squirm under round-the-clock care, it's … well, what else can be said? It's time for a change.
THE CONCEPT OF FAMILY-CENTERED CARE has been informally practiced in the NICU at St. Louis Children's Hospital for the past decade. Simply put, it is the close, respectful partnership among health care professionals, patients and families.
"When a child is ill, the family wants to know what they can do to help make that child better," says Karen Crow, who coordinates the family-centered care program at Children's. "The key to family-centered care is to help caregivers make informed decisions and prepare them to eventually take over the patient's care through education and support."
Crow knows firsthand the stresses of being a NICU parent. Nine years ago, she and her husband, Chip, spent five months on the unit, watching and waiting as their premature daughter, Kristen, underwent multiple surgeries to correct an internal birth defect.
Today Kristen, who weighed just 3 pounds, 1 ounce at birth, is a healthy third-grader and big sister to 4 1/2-year-old brother, Kyle. Her mom, a former high school teacher, has been employed at Children's for the past three years.
"Families have an important role in guiding the hospital's work, and they contribute to its mission of doing what's right for kids," says Crow. Many moms and dads are initially afraid to hold or even touch their fragile newborns, she says. The consistent encouragement of staff helps parents to bond with their baby and to learn to perform other procedures that prepare them and their families for the day the baby is released and sent home.
The definition of family in the NICU is often quite broad, says Anna Lijowska, MD, assistant professor of pediatrics and a leader in the department's family-centered care initiative. It often extends beyond the birth mother and father to include additional caregivers, such as grandparents, other relatives and friends.
What's most important, she says, is to find out who the primary caregivers will be and how the newborn's necessary medical care will fit into the family's lifestyle and beliefs to have the best outcome for the patient.
"Families appreciate it when you make the effort to get to know them," says Lijowska. "Doing so establishes a trusting relationship that flows both ways."
But it is a cultural change, and the challenge is to get all of the players — families, physicians, nursing staff and technicians — to work together.
THE GOAL FOR EVERY BABY in the NICU is to get better and go home," says F. Sessions Cole, MD, the Park J. White, MD Professor of Pediatrics at Washington University School of Medicine and director of the division of pediatric newborn medicine at St. Louis Children's Hospital. "For physicians and nurses, that means having a certain number of medical facts in place. For families, it means organizing all aspects of their lives — jobs, insurance, transportation, child care, support people — to incorporate the routine of caring for their newborns."
The focus of family-centered care is to integrate these priorities, which can be difficult, Cole admits, because the traditional model for medical care and the needs of families are not always complementary.
"Physicians have been taught to prioritize medical concerns as the most important considerations in defining the outcome of the patient, whether in the NICU or any other hospital department," says Cole. "But, if physicians aren't able to integrate family concerns, then the impact of outstanding medical care may be diluted."
Cole believes every family has strengths, regardless of circumstances, and that each is capable of participating in their baby's care in a meaningful way. "If providers start with the idea that a family is unable to do anything, then they're never motivated to find any strengths in the family and that family will fail," he says. "In the NICU, we want to find ways to help every family succeed."
Empowering families to make informed choices about their loved one's care does not supplant the duties of health care professionals. Instead, it allows the family to play a complementary role in care and decision-making. "Parents are the biggest advocates for their babies, and they need to be a part of the discussion and care plan," says nurse practitioner Joan Smith, RNC, NNP.
Cole has long been a proponent of open communication with the families of his patients. For many years, they have been welcome to attend rounds, asking questions and making observations alongside residents, medical students and nurses. And while some see drawbacks to this approach, Cole believes just the opposite.
"Those who are resistant to including families in this way feel that it takes more time and may impede a faculty member from bringing up all the possibilities for care in order not to scare parents. The truth is, when you talk to the parents, they already know the vast majority of possibilities from talking to other families on the unit. In fact, they are reassured when they know that all options are being considered."
Crow and her husband are often asked to share their NICU experience with medical students, as well as residents, interns, fellows and other groups. Karen also has served on the NICU's Partners in Caring committee and the hospital's Family Advisory Council, groups that provide a forum in which families and staff collaborate to improve unit and hospital policies and procedures.
Through family-centered care, the same teams of nurses are assigned to individual babies on each shift, to keep transitions for the baby and family to a minimum. In another example, 24-hour visitation now makes it easier for family caregivers to set their own schedules.
Pediatricians may be more open to such an approach because they are accustomed to dealing with families, says Cole. Still, he suggests that physicians in other specialties consider family-centered care concepts.
Family-centered care is spreading to other pediatric specialties and even into adult care. Crow is working with other units at Children's to build on existing support programs, and surveys show that along with benefiting patients, family-centered care increases workplace satisfaction among medical staff.
"Being a meaningful part of the health care team allows patients and families to feel some control in a world that can seem uncontrollable," says Crow. Her goal is to make the collaboration she and her husband experienced consistent throughout the hospital.