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Your child is dead

Course explores how to manage a pediatric death in the emergency department

This article appeared in the October 18, 1997 edition of ACEP News, the American College of Emergency Physicians newsletter. The article was supplied by Nancy Maruyama, RN, and is reprinted with permission.

bullet "We were drained."
bullet "I was depressed for days."
bullet "It is the worst experience in medicine.

The comments are from a survey of emergency physicians about the experience of telling a parent a child has died. More than two-thirds of the physicians surveyed reported they have unnecessarily prolonged resuscitation efforts in pediatric codes, solely in order to postpone facing parents. Nearly all the physicians surveyed said training in delivering the news to parents would be valuable.

To that end, ACEP this year offered its first course on the topic, "Managing a Pediatric Death in the Emergency Department." In developing the course, moderator William R. Ahrens, MD, Chicago, turned to a uniquely experienced body of experts: mothers and fathers whose children have been pronounced dead in emergency departments.

"Nobody had ever asked these parents what we as emergency physicians can do to make it easier for them," Ahrens said. To get answers, he conducted a survey of parents of SIDS victims. In addition to presenting those results at the Friday morning seminar, Ahrens also invited two SIDS mothers to discuss their emergency department experiences.

News of a child's death is best delivered by the attending physician, the survey showed, and the bereaved mothers confirmed this fact. Direct eye contact is essential. Hand-holding or shoulder-patting are comforting. And words must be chosen with care. Saying "John is dead" or "John died" is better than saying "your child didn't make it" or "your child has expired," the mothers stressed. Referring to the child by name suggests personal involvement and caring.

"Every word that was said the day Becky died is indelibly etched in my mind. I have replayed the words in my mind a million times. It's a never-ending tape," said Pam Borchardt, whose four-month-old daughter succumbed to SIDS six years ago this month.

Agreed Nancy Maruyama, RN, whose four-month-old son, Brendan, died of SIDS 12 years ago this month: "Things that are said at that time you remember forever."

Moved frequently to tears, Borchardt and Maruyama urged emergency department staff to offer bereaved parents a physical memento of the dead child, such as a lock of hair, a handprint or footprint, or a plaster mold of the child's hand. The mothers also urged physicians to ensure all of a dead child's personal items are returned to parents, including pacifiers, clothes, hats, shoes and blankets, even if the items are torn or soiled.

Maruyama said she considers herself fortunate that emergency department personnel gave her a bag of Brendan's effects, including his blanket. She slept with the blanket every night for years after his death, never washing it. But Maruyama said she still regrets not asking for a lock of her first-born child's hair. 1 wish I had just one little strand to keep in a locket," she said.

Borchardt's emergency department experience was less positive. None of Becky's effects were returned to her. "I have a gown, a cap from Becky's birth and a bill from the emergency department where she died. Those are my mementos," she said

In Ahrens's survey, 93 percent of parents said they would have liked a physical memento of their child. "I would give anything to have a lock of hair or handprint now," several parents wrote in the survey margins.

Despite ten years of training and residencies in both pediatrics and emergency medicine, Ahrens said he had "no clue" until he conducted the survey that such mementos were important to bereaved parents. He said his emergency department now offers the mementos routinely. If parents decline, a memento is made and saved anyway. Parents are told to call someone in the emergency department if they later change their minds and want the memento. "It costs you nothing to snip a lock of hair or make a handprint," he said, noting that tools for making hand and footprints are available in every labor and delivery department.

Emergency department bills are one memento bereaved parents don't need Abrens said his emergency department has chosen to "comp" the costs of treating children who die.

Ahrens also urged physicians to consider offering parents a chance to be present during the resuscitation (35 percent of surveyed parents said they would choose this option).

In addition, he said parents should be allowed to hold their dead child (90 percent of surveyed parents said they would choose this option). The setting is crucial, however. Maruyama was given three hours to say good-bye to Brendan, in a darkened room with a rocking chair. The infant boy had been washed and swaddled in a blanket. "He looked like he was sleeping," recalled Maruyama, who said she remains grateful for those final hours with her son. Borchardt, in contrast, was given only minutes to say good-bye to Becky, in a cramped and cluttered storage closet without any light.

Other advice for physicians:

bullet Emphasize to parents that everything medically possible was done.
bullet Emphasize and re-emphasize that the parents are not in any way at fault for a SIDS death. Compassion is equally important if parents do have some culpability in a child's death, such as when a car seat has been improperly secured. Tragedy can strike anyone.
bullet Explain the process of the autopsy, and how to obtain results.
bullet Consider asking about organ donation. In the survey, 75 percent of parents said they would not be offended by such a request.
bullet Refer parents to an appropriate support group. If they decline, be sure they can contact someone in the emergency department if they change their minds.
bullet Consider making a follow-up phone call. In the survey, 75 percent of parents said such a phone call would be helpful. The call can be a chance to re-explain the medical details, re-emphasize that the parents should not blame themselves and repeat information about support groups
bullet Do not be afraid to say you are sorry that a child has died. 'It means a lot to people, and they do not take it for granted," Ahrens said.


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