Jeanette Der Bedrosian / Published Summer 2015
The couple looked over at what they had been told was their stillborn baby. But as the baby, born at 22 weeks, lay on the warmer, the parents could see that the heart was still beating.
IMAGE CREDIT: CORNEL RUBINO
Doctors knew the baby had no chance of surviving, so they hadn't told the parents that their child still had a heartbeat. The physicians didn't want to upset them. But the couple saw, and the father spoke up. A nurse swaddled the baby and handed it to the mother. "The mom felt, 'Oh my gosh, those were precious moments that were lost. I could have been holding the baby that whole time,'" says Naomi Cross, a registered nurse who at the time was new in her role as a perinatal bereavement coordinator for Johns Hopkins Hospital. She was called in to talk with the couple about what had occurred. "I had to go back to the doctor and say, 'We can no longer make decisions [about what to tell parents] because we are afraid to hurt their feelings or offend them. We need to give them all information.'" In this case, that meant saying, "Your baby's heart is still beating. Would you like to hold him?"
Cross had witnessed a gray area—a situation where doctor, nurse, patient, and family may not see eye to eye, not because one is right and everyone else is wrong but because there is no cut-and-dried answer. Here, the question was how to treat the parents of a newborn baby who barely has signs of life. Cross felt that an infant should be regarded much the same as an elderly hospice patient: The patient's death may be imminent, but his vitals should still be recorded, the family should be kept informed on his status, and loved ones should be given resources to cope with the loss. And she started to see that discussions about ethics were not a regular part of the patient care routine. Talking about the loss of a baby is a taboo, she says, and doing so makes people uncomfortable. Cross felt that this patient, like others, had not been given the proper standard of care.
EITHER THE NURSE IS UNCLEAR ABOUT THE RIGHT THING TO DO, OR THE NURSE CAN SEE WHAT SHOULD BE DONE BUT CANNOT DO IT.
As perinatal bereavement coordinator and bedside nurse for the Department of Gynecology and Obstetrics, Cross worked to change her department. She talked to administrators about providing grief resources, to benefit not only patients but also the hospital's bottom line; she showed her higher-ups scholarly articles that indicated candor about how difficult situations would not cost the hospital revenue by dissuading people from returning for future care. She educated colleagues about Maryland statutes on recording health care data even when a patient's death is imminent. She started hosting bereavement training for incoming nurses and residents. It wasn't easy, and she was often met with opposition. "Some days, I felt like I was banging my head against a wall," she says. "In the beginning, I was cussed at. I was cussed at by professionals—by doctors and nurses. I think that I had to really develop a tough skin, and I had to come at it from a very rational standpoint, and, sadly, from a monetary standpoint." It was an uphill battle, but she says she slowly started seeing progress throughout her department—nurses being sent to her with questions, or colleagues sharing information she had taught them.
In January, after several years in this role, Cross transferred to the pediatric emergency department. "I was burned out, I really was," she says. "I felt like I needed my own support group for bereavement coordinators.