Most new mothers who give birth to terminally ill or severely premature babies tend to tune out their discussions with doctors about what treatment options are available, as well as the predictions of morbidity and death, and let their decisions about life support be guided by things like hope, religion, and spirituality, according to a new study published in this month's issue of the journal Pediatrics. The researchers, from Johns Hopkins Children's Center, interviewed 26 mothers whose babies died shortly after birth and found that what these mothers remembered doctors telling them was often very different from what the doctors recorded in the medical charts.
Few of the moms remembered discussing options for delivery room resuscitation with doctors, and even fewer remembered being offered comfort care as an option—even though doctors documented that these options were discussed. According to the study, some of the moms "felt that they had not made any decisions regarding resuscitation and instead 'left things in God's hands.' These parents typically were documented by staff members to 'want everything done.'"
One problem, it's believed, is that these complex discussions and decisions take place during a time of emotional and physical stress. Another problem is the technical language doctors often use, which many new moms find confusing. "We found that the parents of gravely ill newborns, who are understandably overwhelmed, are quite confused by the often technical and vague 'doctor speak.' We, as physicians and caregivers, really need to come up with a clearer way of talking with parents during this incredibly hard time," Dr. Renee Boss, a neonatologist at the center and the study's lead researcher (pictured above), said in a news release.
The mothers who were interviewed also said they felt a deeper sense of trust toward doctors who showed emotion during their discussions, regardless of the prognosis they had for the baby. "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 Dr. Nancy Hutton, head of the pediatric palliative care program at the center, who also worked on the study. "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." —Heather Wax