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

Abstract

Importance: Communication during conversations about death is critical; however, little is known about the language clinicians and families use to discuss death.

Objective: To 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 participants: This 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 measures: The main outcome was the language used to reference death during family meetings between parents and clinicians. Conventional content analysis was used to analyze data.

Results: A 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 relevance: In 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.

Figure 1.. Prevalence of Types of Language Used by Clinicians and Family Members to Refer to Death

Proportions represent relative frequencies; for each language type, the number of uses was scaled by the total number of references to death made by each group (275 for clinicians, 131 for family members). “The word itself” refers to die, death, dying, or stillborn.

Figure 2.. Proposed Framework for Conceptualizing the Clarity of 5 Common Ways to Reference Death

The narrowest and most precise type of reference, use of die, death, dying, or stillborn (“the word itself”), is most clear, whereas euphemisms leave more room for misunderstanding.