Tough to Talk When a Newborn is Dying
End-of-life decisions are trying no matter the circumstances. But when the end of a life comes near its very beginning, discussions about what to do are all the more wrenching. The emotional trauma of delivering a terminally ill or severely premature baby is often compounded by unsatisfactory communications between physicians and parents, a new study shows.
Reporting in the September issue of Pediatrics, researchers at the Johns Hopkins Children's Center found that, among 26 mothers of babies who died soon after birth at three mid-Atlantic hospitals, many had recollections of discussions with physicians that diverged dramatically from what was recorded on the newborns' medical charts.
Interviewed an average of three years after the loss of their babies, the mothers by and large didn't remember their doctors' talking with them about the full range of options for caring for their babies, which, for those with fatal anomalies or who are younger than about 22-25 weeks at delivery, range from all-out attempts to keep them alive to keeping them comfortable until they died.
Renee Boss, the study's lead author and a neonatologist at Johns Hopkins Children's Center, says that "Quite a few women didn't really remember having any discussions at all, even when those discussions were reflected on the chart."
Not that anyone is being untruthful: Boss notes that women's memories may well -- and understandably -- have been muddied not just by the time that had elapsed between the death of their babies and their being questioned for the study but also by the circumstances surrounding that death. "The women and their partners are gong through a crazy and chaotic experience," she says. "That emotional trauma can make it terribly difficult to hear what a physician is saying."
Many women reported making decisions based on their own religious or spiritual beliefs; they often maintained a sense of hope in spite of their doctors' grave prognoses. Moreover, many reported that they would have appreciated their physicians' offering compassion and a sense of hope instead of cold, dispassionate appraisals of their babies' likelihood of surviving.
"I felt that they could have had a little more compassion instead of being so negative, especially when a hospital is known for good research and good procedures and stuff. Just be more optimistic. It's really important for a parent to hear some hope, although the rationale says that this is 90% going to happen this way negatively."
What do you expect of your physicians during times of crisis? Do you value their showing emotion and empathy? Or do you prefer a more stoic, clinical presence?
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