The hardest word

— Study finds doctors, families avoid saying ‘death’

By Paul John Scott

A new study has found that conversations between families and physicians who treat critically ill infants avoided direct language in 92% of all references to death and dying, but that the two parties did so through different linguistic evasions.

The study, conducted by Duke University researchers between September 2018 and 2020, analyzed 68 recorded conversations between physicians and 24 participating families of infants hospitalized for neurologic conditions in an intensive care unit.

It was published in the journal JAMA Network Open.

“This study was really inspired by a recognition that it can be hard to talk clearly and directly about challenging, high-stakes topics,” said Dr. Monica Lemmon, an associate professor of pediatrics and population health sciences at Duke and lead author of the paper. “We aimed primarily to characterize the way death is discussed.”

While it is commonplace to use softer language for death and dying in day-to-day conversations, in order to minimize confusion, consensus guidelines within medicine the paper noted “emphasize the importance of clear communication, including avoiding euphemism use.”

In the new study, researchers found 33 out of 68, or 45% of all family meetings, involved a discussion of death. There were 406 recorded references to death within those meetings — 275 made by clinicians, and 131 made by family members. Of those, the words “die,” “death,” “dying” and “stillborn” were used just 15% of the time by family members, and 5% of the time by physicians.

“What was most striking was the direct use of the words themselves … were used quite rarely,” Lemmon said. She said that “families often used colloquialisms or common phrases to reference death,” while “clinicians instead most often used medical jargon, which may be less clear to people who aren’t medically trained.”

Physicians used medical jargon 43% of the time when discussing death during the study, which included as examples terms for death such as “event,” “code,” “episode,” “arrest,” or “irretrievable drop” in heart rate.

Families preferred colloquialisms 34% of the time, the paper found. These included phrases such as “pass away,” and “not make it.” The paper identified two other forms of euphemisms: expressions referring to survival — like “don’t live,” or “not survive” — and the use of pronouns in place of death, such as “it,” “this,” “that” or “something.”

In an accompanying commentary, a trio of pediatricians from the University of Minnesota Medical School placed the findings within a larger problem described as “jargon oblivion” in medicine. For lead author Dr. Michael Pitt, the new study provides physicians with a framework to better understand what that looks like in practice.

“I think what this study adds is actual proof to what we expected,” he said. “Which is that we tend to avoid these difficult words — death, dying — at the bedside during important conversations with families. They elegantly quantified that in a study where they recorded and transcribed these transcripts, and showed that providers rarely used these terms.”

The harm, Pitt says, is that families may need to hear the word death to understand that death is what is being discussed.

“They hear ‘we did everything we could’ (and) they might want to reply, ‘OK, get somebody else to do something, then.'”

Pitt recalls that when his father recently died, “the nurse called my mom and said, ‘He’s no longer with us,'” he said.

“She initially thought that meant that he’d been transferred, or gotten lost … you’re having the most serious conversation of a family’s life, yet they may not understand what you’re saying unless you use clearer language.”

Dr. Brenda Schiltz is a pediatric critical care specialist at Mayo Clinic who has had numerous conversations with families in which she was required to discuss the actual or possible death of a child. “I think it’s a good paper,” she says of the Duke study.

“It wasn’t surprising at all, to be honest,” she adds. “We teach trainees all the time about when we’re breaking bad news … to be very concrete, to use the word ‘death.’ But even when do all those teachings, it’s a hard thing to tell somebody. It’s a very hard thing to tell somebody.”

Schiltz says that while clear communication about death is critical, it often is a shift in thinking for physicians.

“Not only is it hard,” she said, “as a physician and everybody that’s on the medical team, we’re trying to save these babies. No one wants to feel as if we lost that battle. We’re always fighting. We’re always trying to keep hope alive, and try one more thing … It’s tough to admit when, despite our best efforts, we can’t save somebody.”

The study did not look at whether the families studied preferred direct language about death, Lemmon notes, or whether the euphemisms identified produced any confusion in the conversations.

“Some euphemisms might be quite clear to all the parties involved,” she said. “Especially when they’re used by a family member and mutually understood by the clinical team. That said, it’s important there’s a shared understanding of what we’re all talking about, and for this particular study, the outcome of death is something critically important for everyone to be on the same page around.”

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