By Amanda Gardner
WEDNESDAY, Oct. 1 (HealthDay News) -- One of the most anguishing moments for parents is deciding on a course of action -- or non-action -- when their baby is born extremely prematurely or with potentially fatal or disabling problems.
Here, parent-doctor discussions regarding life support or compassionate end-of-life care are key. Yet, few result in satisfaction for the families. Instead, miscommunication and misunderstanding taint the final days or hours of a dying infant's life and their families' remembrances of them, a new study found.
"In the vast majority of cases, physicians and parents make decisions to some degree together, and we don't really have a clear understanding at this time about what things are most important to families," said study lead author Dr. Renee Boss, a neonatologist at Johns Hopkins Children's Center.
These conversations are even more poignant, given that there is no way to gauge the tiny patients' own desires.
"With older children or with adults, when decisions need to be made about life-sustaining therapies, we often reflect upon what we know about the patients, what they might have expressed earlier in life about what they might desire," Boss said. "Obviously, none of that information is available for a baby, so what we turn to are the parents' values, what is it that they would want for the baby? The parents play a much more central role in these decisions than the families of older adults."
Boss and her colleagues conducted in-depth interviews with and reviewed the medical charts of 26 mothers whose infants had died as a result of extreme prematurity or fatal congenital anomalies. Fifteen percent of the women had used assisted reproductive techniques to conceive, and 54 percent had had a previous miscarriage or infant death.
While all the parents wanted to be involved in decisions regarding delivery-room resuscitation, few could recall discussing the full range of options with doctors. And fewer still remembered being offered comfort care for their infant as an option, even when these discussions were written in the hospitals' medical charts.
Doctors and mothers also spoke in -- almost literally -- different languages, with mothers often confused by what the doctors were saying, found the study, published in the September issue of the journal Pediatrics.
While parents often predicated their life-and-death decisions on issues of religion, spirituality and hope, physicians were framing their discussions in terms of death and disability.
Moms were also more likely to regard physicians as providing hope -- not when they predicted the infant would not die, but when they expressed emotion even while reporting that the chances of survival were slim.
Much of the onus for clarifying communication lies with the physician or the system providing care, the study authors and others stated.
"I think doctors do need to be able to have attending skills or "being with" skills where they need to read the cues of the family," said Chaplain Paul Beckman of Cincinnati Children's Hospital Medical Center. "I have seen times when the doctor does not even know the sex of the baby or the name of the baby. It does take time. The doctor may have to sit with the family for half an hour instead of 10 minutes. The doctor may have to get one of his or her residents or a colleague to take his pager."
The doctor should also be in touch with the chaplain or social worker and, if possible, the chaplain or social worker should sit in on any conversations, the experts said.
A doctor may say, "There's nothing we can do for this child," and forget to add that in the short-term, parents can be given an opportunity to connect with the child.
"If it means aggressive treatment or resuscitating the baby so he or she lives a week or two, that might be very important for the parents or family to bond, so they have two weeks or two hours of memories instead of nothing," Beckman said.
These heart-wrenching decisions will affect parents for years to come.