Child Care :: Parents of Dying Newborns Need Clearer Explanations of Care Options

A small study of conversations with 26 parents of babies who died shortly after birth found that what parents said they had been told about treatment or end-of-life options was frequently at odds with what caregivers reported in the medical record.

?Birth is a stressful time for every parent, but our study shows that the parents of severely premature babies or babies with life-threatening defects may be so confused by the often technical and vague ?doctor speak? during what is a highly emotional time that we may be speaking different languages,? says lead author Renee Boss, M.D., a neonatologist at the Children?s Center.

?The bottom line is that parents of critically ill newborns are so overwhelmed that they are often and understandably confused about life-sustaining or non-life-sustaining options, and we need to do a better job of communicating,? Boss says.

A range of choices exists for managing critically ill newborns with grim prognoses, from orders to perform aggressive resuscitation to compassionate care through the end of life. Parents and doctors must often make complex decisions in a matter of minutes.

Researchers say their findings should be heeded as a call for new, clearer guidelines by the American Academy of Pediatrics on how physicians should discuss life-sustaining options with new parents.

The study showed:

? Doctors? predictions about a baby?s outcome had little effect on what course of action the parents chose.

? Religion and spirituality played a central role in that decision.

? Few parents reported being given multiple options.

? Few parents recalled discussing resuscitation as an option at all. However, medical records often indicated that such options were discussed.

? Parents found doctors? language confusing, such as calling a baby ?unstable? instead of explaining that the baby may die.

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