Hard Decisions for the Littlest Lives

By Amanda Gardner
HealthDay Reporter
Wednesday, October 1, 2008; 2:00 PM

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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.