01:07am Thursday 14 November 2019

Photos May Help Mothers with End-Of-Life Decisions for High-Risk Premature Babies

Highlights from the study will be presented on May 2 at the annual meeting of the Pediatric Academic Societies.

A range of options exists for managing infants born before 25 weeks of gestation — from resuscitation to palliative care. But many such babies face grim prognoses, and parents and doctors must often make decisions within minutes of delivery.

To test the value of photographs in helping explain the full spectrum of possible lifelong neurological and developmental outcomes facing very premature babies — ranging from normal development to severe disability—the Hopkins researchers recruited 90 women who had just given birth to full-term babies.

The women were given a hypothetical scenario and asked to make a resuscitation decision following a standard prenatal counseling for extremely premature delivery. Then they were asked to make that decision again, but this time after also viewing photos of school-aged children with a wide range of outcomes, from normal development to severe neurological and developmental disabilities associated with severe prematurity.

After seeing the photographs, many mothers said they felt greater certainty about their decision and reported a better grasp of the risks and benefits of each alternative. Nearly 77 percent said they preferred the counseling augmented by the photographs.

Specifically, after the picture-free counseling, 40 percent of the women were still struggling and could not make a decision, but after seeing the pictures, one-third of the undecided women said they felt comfortable making a choice.

“It can be hard for someone to imagine their newborn 10, 20, 30 years down the road,” says lead investigator Colleen Hughes-Driscoll, M.D., a neonatologist at Hopkins Children’s. “But with these powerful images, the data suggest we can help mothers during this critical time by making the often-confusing ‘doctor speak’ more concrete and by putting vague medical terms into real context.”

The photographs can also narrow the gap between what is being said and what is being heard, the investigators say, so much so that these pictures can be an invaluable tool for doctors and patients alike.

“The bottom line is that neonatologists need to talk about long-term outcomes during prenatal counseling of women with high-risk pregnancies,” says study senior investigator Pamela Donohue, Sc.D., of Hopkins Children’s. “One of the reasons why they don’t is that they don’t have the right words, and this is where pictures can help.”

Researchers measured a woman’s degree of uncertainty or conflict about her choice using a standard 1 to 5 scale. The average conflict score dropped from 1.88 to 1.74 after the women saw the images. 

The researchers plan to next study the approach in a group of mothers getting ready to give birth to a very premature baby.

Up to 1.7 percent of the 4.2 million births in the United States each year involve severely premature babies weighing less than 1,500 grams.

Co-authors on the study included Renee Boss, M.D., Jessica Bienstock, M.D., M.P.H., and Jennifer Shepard.

Founded in 1912 as the children’s hospital of the Johns Hopkins Medical Institutions, the Johns Hopkins Children’s Center offers one of the most comprehensive pediatric medical programs in the country, treating more than 90,000 children each year. Hopkins Children’s is consistently ranked among the top children’s hospitals in the nation. Hopkins Children’s 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, please visit www.hopkinschildrens.org

MEDIA CONTACT: Katerina Pesheva
EMAIL: epeshev1@jhmi.edu
PHONE: (410) 516-4996

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