Friday, March 28, 2003
Study: Parent-Doctor Communications Important
Posted: 8:50 a.m. CST March 27, 2003
AUSTIN, Texas -- For the parents of a significantly premature infant, the uncertainty and life-or-death moments in the baby's first weeks can lead to a dizzying sense of helplessness. "It's amazingly draining, and it's amazingly scary," said Janice Bachardy, a Wimberly mother of two children who were born prematurely. "It's a constant state of something being out of your control."
A professor of nursing at the University of Texas says constant communication between parents and physicians can make a huge difference.
In a just-released study that looked at 154 families at two Austin hospitals over a span of five years, Joy Penticuff found that parents who held routine meetings with doctors for one month were more satisfied with medical decisions made for their baby and had a more realistic view of their baby's condition.
"When you think about an infant, the parent's duty is to protect and to nurture, and so you have to have parents who can understand," Penticuff said.
Bachardy and her husband, Matthew, participated in the study after the birth of their second premature child, Katie.
Katie was born with underdeveloped lungs, and doctors were forced to operate on the infant to correct a hernia. She is now healthy.
Janice Bachardy said it was troubling to authorize surgery on the baby, but the doctor's explanation helped the parents to understand what was happening.
"How can you say no?" she said. "You have to think what's best for the child, hold your fears off and pray for the best."
Medical developments, such as sophisticated ventilators, antibiotics and nutritious fluids that can be administered intravenously, have increased the chances that a premature infant will survive.
Advancing technology also enables the births of increasingly underdeveloped babies.
About 6 percent of babies born each year in the United States are premature. Of those 250,000 premature infants, about 30,000 are born more than three months early, according to the study. They often weigh between one and two pounds and are at the greatest risk of dying or surviving with a significant disability, most commonly a neurological disorder.
"We've always had those babies that are just out of reach of the technology development," Penticuff said.
For Penticuff, the demands of dealing with borderline babies demands collaborative decision-making between doctors, nurses and parents. She believes that parents should have an educated and realistic view of their infant's health, especially when they confront decisions about artificially sustaining a life that is profoundly impaired.
"We've got to help them be involved in decision-making so that we don't just impose technology on an infant when the technology is more of a burden than a benefit," she said.
The participating parents kept a checklist monitoring their children's vital organs during the month of the study. They also met weekly with doctors and nurses to discuss the baby's condition, treatment plans and hypothetical outcomes.
Audio tapes made of the meetings between doctors and parents showed that doctors need further training in collaborating with parents, Penticuff said.
"It's a new notion. No health professionals in neonatal that I'm aware of have gone through training programs that prepare them to deal with this," said Penticuff, who holds a master's degree in pediatric nursing and a doctorate in clinical child psychology.
Dr. George Sharpe, a neonatologist who participated in the Penticuff study, said doctors also benefit by talking with parents, particularly when confronting decisions about artificially sustaining a baby's life.
"We should go through a structured examination of goals of the care plan and potential stopping points if failure is imminent," he said.
Sharpe said such conversations are rare and busy doctors are unlikely to schedule meetings unless someone else does it for them. Penticuff said her next study will give nurses the role of organizing the meetings.
Sharpe said doctors may also feel uneasy dealing with parents of critically ill infants. "We know that however uncomfortable it is for us, the toll on the parents is much greater," he said.
Kathy Alley, of Austin, delivered her son, Benjamin, three months early. Benjamin, who is healthy now, weighed 2.5 pounds at birth and spent three months in intensive care as his lungs developed.
Alley said she felt lucky to participate in the study because she valued the weekly meetings with the doctor. But Benjamin remained in the hospital after the study was over, and communication dwindled.
"I understand that (the doctors) can't call everybody at home, and they're very busy, but I would find out after the fact when something had been done," Alley said. "I learned I had to be assertive."
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