"Parent-doctor discussions about whether to maintain or withdraw life support from terminally ill or severely premature newborns are so plagued by miscommunication and misunderstanding that they might as well be in different languages" begins the review of the study which interviewed 26 mothers of babies at three mid-Atlantic NICUs.
The study found "what mothers said they were told by doctors was often at odds with what physicians recorded in the medical chart with respect to options offered and accepted" and "few mothers recalled discussing the full range of options, from aggressive resuscitation to palliative care through the end of life".
"We found that the parents of gravely ill newborns, who are understandably overwhelmed are quite confused by the often technical and vague 'doctor speak'," says lead researcher Renee Boss, M.D., a neonatologist at Hopkins Children's. "We, as physicians and caregivers, really need to come up with a clearer way of talking with parents during this incredibly hard time."
The study found 'most' moms prefer to make decisions together with their doctors, not alone, and mistrusted physicians who seemed detached or 'by the book' and felt deeper trust of "physicians who expressed emotion, regardless of the prognosis they had for the infant". Obstetrics and neonatology training should help staff be "attentive to emotion and expressing empathy when delivering bad news". The study calls for organizations like the American Academy of Pediatrics to formulate new guidelines helping physicians to discuss "life-sustaining options" with parents.
Johns Hopkins Medical Institutions (2008, September 17). Parents Of Dying Newborns Need Clearer Explanation Of Options. ScienceDaily. Retrieved September 18, 2008, from http://www.sciencedaily.com /releases/2008/09/080915174550.htm