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Parents Of Dying Newborns Need Clearer Explanation Of Options

September 12, 2008
Renee Boss, M.D.

Renee Boss, M.D.

Misunderstanding is rife  

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, according to a small but potentially instructive new study from Johns Hopkins Children’s Center reported in the September issue of Pediatrics.  

In-depth interviews with 26 mothers of babies who died shortly after birth at three mid-Atlantic hospitals revealed that 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. This qualitative study explored themes rather than frequencies and investigators did not report specific frequencies of responses as part of the study.

A range of choices exists for managing critically ill newborns, those born with lethal anomalies or at less than 22-25 weeks gestation, including orders to perform aggressive resuscitation to delivering compassionate care only. Parents and doctors must often make complex decisions in a matter of minutes, a situation compounded by the parents’ emotional stress and, often, the new mother’s own medical status.

Results of the interviews show that few mothers recalled discussing the full range of options, from aggressive resuscitation to palliative care through the end of life. In fact, few recalled discussing resuscitation as an option at all, while the written medical records often indicated that such options were discussed. For example, one mother reported being told nothing could be done for the newborn, while the medical chart indicated that various options were discussed at length.

Many moms found doctors’ language confusing. Few recalled being offered comfort end-of-life care, even when the discussion was noted in the medical charts.

Tuning out much of doctors’ grim predictions about morbidity and death, most mothers said they based their decisions about life support on things such as hope, spirituality and religion.

“What this study tells us is doctors should become better at delivering grim prognoses unequivocally, yet compassionately, but many doctors are uncomfortable expressing emotion during such intense moments,” says study investigator Nancy Hutton, M.D., head of the pediatric palliative care program at Hopkins Children’s. “Some doctors might think showing empathy and being positive could give parents a false sense of hope, but there are ways to be hopeful and realistic at the same time, we just need to train doctors to do it better.”

“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.”

Most mothers said they wanted to make decisions together with the doctors, not alone. They reported mistrusting physicians who seemed detached and appeared to be acting “by the book.”

Because mothers in the study reported a deeper sense of trust toward physicians who expressed emotion, regardless of the prognosis they had for the infant, researchers say obstetrics and neonatology training should emphasize paying attention to emotion and expressing empathy when delivering bad news. Also, physician organizations, such as the American Academy of Pediatrics, should address this need with new guidelines on how physicians should discuss life-sustaining options with parents.

The interviews took place on average three years after the infant’s death.

Other investigators in the study: Pamela Donohue, Sc.D., Anna West, M.H.S., and Leslie Sulpar, M.S.N., all of Hopkins.                     

Founded in 1912 as the children's hospital at Johns Hopkins, the Johns Hopkins Children's Center offers one of the most comprehensive pediatric medical programs in the country, with more than 92,000 patient visits and nearly 9,000 admissions each year. The Johns Hopkins Children's Center is Maryland's largest children's hospital and the only state-designated Trauma Service and Burn Unit for pediatric patients. It has recognized Centers of Excellence in dozens of pediatric subspecialties, including allergy, cardiology, cystic fibrosis, gastroenterology, nephrology, neurology, neurosurgery, oncology, pulmonary, and transplant. For more information, visit www.hopkinschildrens.org.