Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants

Abstract

ImportanceCommunication during conversations about death is critical; however, little is known about the language clinicians and families use to discuss death.ObjectiveTo characterize (1) the way death is discussed in family meetings between parents of critically ill infants and the clinical team and (2) how discussion of death differs between clinicians and family members.Design, Setting, and ParticipantsThis longitudinal qualitative study took place at a single academic hospital in the southeast US. Patients were enrolled from September 2018 to September 2020, and infants were followed up longitudinally throughout their hospitalization. Participants included families of infants with neurologic conditions who were hospitalized in the intensive care unit and had a planned family meeting to discuss neurologic prognosis or starting, not starting, or discontinuing life-sustaining treatment. Family meetings were recorded, transcribed, and deidentified before being screened for discussion of death.Main Outcomes and MeasuresThe main outcome was the language used to reference death during family meetings between parents and clinicians. Conventional content analysis was used to analyze data.ResultsA total of 68 family meetings involving 36 parents of 24 infants were screened; 33 family meetings (49%) involving 20 parents (56%) and 13 infants (54%) included discussion of death. Most parents involved in discussion of death identified as the infant’s mother (13 [65%]) and as Black (12 [60%]). Death was referenced 406 times throughout the family meetings (275 times by clinicians and 131 times by family members); the words die, death, dying, or stillborn were used 5% of the time by clinicians (13 of 275 references) and 15% of the time by family members (19 of 131 references). Four types of euphemisms used in place of die, death, dying, or stillborn were identified: (1) survival framing (eg, not live), (2) colloquialisms (eg, pass away), (3) medical jargon, including obscure technical terms (eg, code event) or talking around death with physiologic terms (eg, irrecoverable heart rate drop), and (4) pronouns without an antecedent (eg, it). The most common type of euphemism used by clinicians was medical jargon (118 of 275 references [43%]). The most common type of euphemism used by family members was colloquialism (44 of 131 references [34%]).Conclusions and RelevanceIn this qualitative study, the words die, death, dying, or stillborn were rarely used to refer to death in family meetings with clinicians. Families most often used colloquialisms to reference death, and clinicians most often used medical jargon. Future work should evaluate the effects of euphemisms on mutual understanding, shared decision-making, and clinician-family relationships.

Use of Euphemisms to Avoid Saying Death and Dying in Critical Care Conversations—A Thorn by Any Other Name

“…This mismatch of intent and action has been called jargon oblivion—a clinician’s failure to recognize and mitigate their use of medical jargon despite having a broad awareness that patients may find it confusing . Given that consensus guidelines recommend avoiding euphemisms when discussing end-of-life care, the findings presented by Barlet and colleagues further demonstrate the existence of this mismatch between clinicians’ intentions and their actions. We have argued that unless we equip health care practitioners with ways to recognize words and phrases they use that may be poorly understood by their patients, they will continue to use language that creates confusion.…”

“…The study by Barlet et al revealed that although death was a frequent topic during family meetings about critically ill infants, the word death was rarely spoken. In an analysis of 33 clinician-family meetings that took place in a neonatal, pediatric, or pediatric cardiac intensive care unit setting, among the 406 identified references to death, die , death , dying , or stillborn were used only 8% of the time.…”

“…Frameworks for categorizing medical communication, such as the one Barlet et al propose, can be an important tool in addressing how patients and their families understand their health, in this case directly impacting life-and-death decisions. Although clinicians acknowledge the importance of using clear, patient-friendly language, their use of medical jargon with patients remains common .…”

“…Accordingly, we have published a classification system of 7 types of medical jargon to aid clinicians and health educators with a framework to recognize the nuances of their language choices and appreciate the potential for confusion these can generate . Barlet and colleagues provide further consideration of types of speech that may obscure a clinician’s intended meaning or distract from their true point in the context of family discussions about critically ill patients.…”

“…What makes the findings of Barlet et al so compelling is that euphemisms—the linguistic mechanism they revealed to be most commonly used when discussing death—are different from the other categories of jargon. The use of most jargon types (eg, technical terminology, abbreviations, medicalized English, and unnecessary synonyms) likely reflects jargon oblivion; the speaker is so accustomed to communicating within their field that they simply forget that not everyone understands the phrases they use.…”