How lack of transparency at hospitals does ‘more harm than good’ for grieving families
When deaths and mistakes happen inside hospitals, experts say, there is a growing consensus about how doctors and nurses should respond: Be candid with family members about what happened — and apologize for any errors.
For years, a culture of silence surrounded medical errors, health policy experts say. A desire to avoid malpractice lawsuits and other consequences made many hospital employees, lawyers and risk managers reluctant to share information about mistakes.
But healthcare providers increasingly recognize that silence and secrecy aren’t the best policies. It’s particularly important for hospitals to be open with parents who lose newborns in the hospital, according to research.
In cases where a baby dies in the neonatal intensive care unit, hospitals should meet with parents four to six weeks after the baby’s death to help them understand what happened, according to a 2015 article in the Journal of Perinatology.
Hospitals should also refer parents to support groups and offer counseling regarding the physical and psychological considerations of attempting another pregnancy, the article says.
Helping families who’ve lost babies is an “essential part of our care,” said Carole Kenner, one of the article’s authors and CEO of the Council of International Neonatal Nurses.
“We are changing lives by providing the support families need,” said Kenner, who is Dean of the School of Nursing and Health Sciences at the College of New Jersey. “And we’re changing lives in a bad way if we don’t provide the support the family needs.”
A traumatic ordeal
LaChunda Hunter said she has learned that firsthand. In a lawsuit filed in early March, the Charlotte mother described the harrowing circumstances that followed the 2022 death of her premature baby, Legacy.
Three days after being told Legacy had died at Novant Presbyterian Medical Center, the lawsuit says, Hunter got a call from a doctor who told her that her baby was alive and that her test results were improving. The doctor hung up the phone after Hunter’s work assistant, who was listening in by speaker phone, told the doctor that Hunter had been informed her baby was dead, the lawsuit says.
A different doctor called several hours later to tell Hunter that the encouraging test results she’d been provided were for a different baby. Hunter said she wanted to go to the hospital to see the baby whose test results had been reported, but the doctor said that if she tried to do that, she would be arrested, according to the lawsuit.
Hunter said the ordeal has traumatized her, leaving her to wonder for more than two years whether her baby is alive or dead. Her attorney, Kristin King, said she repeatedly asked Novant Health and its lawyer for a meeting to better understand what happened, but was never given an opportunity.
Aside from having her return to the hospital to hold the dead baby’s body, Novant failed to offer Hunter any support after Legacy died, she said. “If anything, they made me feel worse,” she said.
Novant wouldn’t discuss Hunter’s complaints, citing patient privacy laws. King gave the hospital system written permission to discuss Hunter’s case with a Charlotte Observer reporter. But Novant said that it would not talk about the case unless Hunter signed a consent form that King said was “inappropriate and overreaching for the circumstances involved.”
In a statement to The Observer, a Novant spokeswoman said the hospital system’s neonatal intensive care unit teams “develop strong relationships with patient families and guide them through what is an understandably stressful time. From physicians, to nurses, to social workers and child life specialists, open, consistent communication with families is a vital aspect of the care that we provide.”
Novant said it provides a “dedicated parents’ space” that allows families to stay overnight, and also serves as a private bereavement room.
“Helping families honor the memory of their babies is an important part of what we do, and our teams provide commemorative keepsakes in addition to other grief resources,” the Novant statement said.
‘Communicating disrespect’
Told of Hunter’s account, leaders of two patient advocacy groups found fault with the way the hospital reportedly handled the situation.
“It sounds like a horrific charting error that was not handled as sensitively as it could have been, to put it mildly,” said Lindsey Wimmer, executive director of the Star Legacy Foundation, which supports families who lose newborns.
Helen Haskell, Founder of Mothers Against Medical Error, a group based in Columbia, S.C., said medical mistakes — and errors in charting and reading medical records — sometimes happen inside hospitals because doctors and nurses are rushed. But what reportedly happened in Hunter’s case is inexcusable, she said.
“I cannot imagine threatening a bereaved mother,” Haskell said. “It’s baffling to me how this mother was treated.”
Poor communication by healthcare providers can lead to medical complications, studies have found. Hunter says it can lead to trauma, too. The 2022 experience has haunted her, causing her to suffer PTSD, anxiety and depression, her lawsuit says.
At least one influential organization has required hospitals to be more transparent about errors.
The Joint Commission, the oldest and largest hospital accreditor, told hospitals in 2001 that they must inform patients about medical errors. The regulations came in response to a 1999 Institute of Medicine report that estimated that preventable medical mistakes killed more than 44,000 hospital patients each year.
“It does seem to me if a hospital chooses to be excessively non-transparent — if they err on the side of opacity — they sometimes do themselves more harm than good,” said Dr. Albert Wu, a researcher at Johns Hopkins University who has studied the challenges of acknowledging mistakes in healthcare. “There’s no such thing as not communicating. If you say nothing, you’re in many cases communicating disrespect.”
This story was originally published March 13, 2024 at 5:00 AM.
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