Decision Making for Infants With Neurologic Conditions

Gerrity, Charlotte; Farley, Samantha; Barks, Mary C.; Ubel, Peter A.; Brandon, Debra; Pollak, Kathryn I.; Lemmon, Monica E.

doi:10.1177/08830738211056779

Cited by 9 publications

(6 citation statements)

References 47 publications

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“…Parents were not enrolled if they (1) were younger than 18 years, (2) had a speech and/or hearing impairment, or (3) required translation to read or interpretation to converse in English. This study was part of a larger study 37 , 38 , 39 , 40 in which parents provided written informed consent to have family meetings recorded, fill out surveys, and perform interviews; they received financial compensation for participation in the overall study at the time of interviews and survey completion. Recruitment was halted from March 16 to June 16, 2020, owing to the COVID-19 pandemic.…”

Section: Methodsmentioning

confidence: 99%

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

et al. 2022

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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.

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Section: Methodsmentioning

confidence: 99%

Section: Data Collectionmentioning

confidence: 99%

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

et al. 2022

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“…All cases with at least one audiorecorded family conference were included for analysis. This analysis occurred in the context of a larger study in which parents completed longitudinal surveys and semistructured interviews; the present analysis targets recorded family conference data 18,20,21 …”

Section: Methodsmentioning

confidence: 99%

“…This analysis occurred in the context of a larger study in which parents completed longitudinal surveys and semistructured interviews; the present analysis targets recorded family conference data. 18,20,21 Qualitative Analysis Analytic Approach. Audiorecordings were transcribed and deidentified.…”

Section: Participantsmentioning

confidence: 99%

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences

Lemmon

Barks

Bernstein

et al. 2022

Annals of Neurology

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Objective We characterize the content and role of prognostic discussion for infants with neurologic conditions. Methods In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid‐cycle qualitative approach to identify and refine themes. Results Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision‐making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty. Interpretation In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision‐making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699–709

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“…14 Conversations in the neonatal and infant context are rarely about survival and more often center on the potential for life with neurologic impairment. 15 These differences underscore the need for dedicated study of parent preferences for prognostic communication in the context of potential neurologic impairment.…”

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The ALIGN Framework

et al. 2023

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Background and Objectives:Clinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. While communication tools have been developed in other disciplines and settings, none address the unique needs of the neonatal and pediatric neurology context. We aimed to develop a parent-informed framework to guide clinicians in communicating information about neurologic prognosis.Methods:Parents of infants with neurologic conditions in the intensive care unit were enrolled in a longitudinal study of shared decision-making from 2018-2020. Parents completed semi-structured interviews following recorded family meetings with the health care team, at hospital discharge, and 6 months after discharge. All interviews targeted information about parent preferences for prognostic disclosure. We analyzed the data using a conventional content analysis approach. Two study team members independently coded all interview transcripts and discrepancies were resolved in consensus. We used NVIVO 12 qualitative software to index and organize codes.Results:Fifty-two parents of 37 infants completed 123 interviews. Parents were predominantly mothers (n=37/52, 71%) with a median age of 31 (range 19-46). Half were Black (n=26/52, 50%) and a minority reported Hispanic ethnicity (n=2/52, 4%). Inductive analysis resulted in the emergence of five phases of prognostic communication (Approach, Learn, Inform, Give support, and Next steps: ALIGN): 1)Approach: Parents appreciated receiving consistent information about their child’s neurologic outcome from clinicians who knew their child well. 2)Learn: Parents valued when clinicians asked them how they preferred receiving information and what they already knew about their child’s outcome prior to information delivery. 3)Inform: Parents valued honest, thorough, and balanced information that disclosed prognostic uncertainty and acknowledged room for hope. 4)Give support: Parents valued empathic communication and appreciated clinicians who offered real-time emotional support. 5)Next steps: Parents appreciated clinicians who connected them to resources, including peer support.Discussion:The ALIGN framework offers a novel, parent-informed strategy to effectively communicate neurologic prognosis. While ALIGN represents key elements of a conversation about prognosis, each clinician can adapt this framework to their own approach. Future work will assess the effectiveness of this framework on communication quality and prognostic understanding.

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Decision Making for Infants With Neurologic Conditions

Cited by 9 publications

References 47 publications

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

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

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences

The ALIGN Framework

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