title: Family matters: effects of birth order, culture, and family dynamics on surrogate decision-making.
abstract: Cultural attitudes about medical decision-making and filial expectations may lead some surrogates to experience stress and family conflict. Thirteen focus groups with racially and ethnically diverse English and Spanish speakers from county and Veterans Affairs hospitals, senior centers, and cancer support groups were conducted to describe participants' experiences making serious or end-of-life decisions for others. Filial expectations and family dynamics related to birth order and surrogate decision-making were explored using qualitative, thematic content analysis, and overarching themes from focus group transcripts were identified. The mean age of the 69 participants was 69 ± 14, and 29% were African American, 26% were white, 26% were Asian or Pacific Islander, and 19% were Latino. Seventy percent of participants engaged in unprompted discussions about birth order and family dynamics. Six subthemes were identified within three overarching categories: communication (unspoken expectations and discussion of death as taboo), emotion (emotional stress and feelings of loneliness), and conflict (family conflict and potential solutions to prevent conflict). These findings suggest that birth order and family dynamics can have profound effects on surrogate stress and coping. Clinicians should be aware of potential unspoken filial expectations for firstborns and help facilitate communication between the patient, surrogate, and extended family to reduce stress and conflict.
authors.affiliation: Icahn School of Medicine at Mount Sinai, New York, New York.
authors.forename: Christopher T
authors.initials: CT
authors.lastname: Su
authors.forename: Ryan D
authors.initials: RD
authors.lastname: McMahan
authors.forename: Brie A
authors.initials: BA
authors.lastname: Williams
authors.forename: Rashmi K
authors.initials: RK
authors.lastname: Sharma
authors.forename: Rebecca L
authors.initials: RL
authors.lastname: Sudore
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D001722:Birth Order; D003142:Communication; D003220:Conflict, Psychological; D003466:Cultural Characteristics; D003657:Decision Making; D004644:Emotions; D005195:Family Relations; D005260:Female; D017144:Focus Groups; D057220:Health Literacy; D006801:Humans; D008132:Loneliness; D008297:Male; D008875:Middle Aged; D019727:Proxy; D036301:Qualitative Research; D012495:San Francisco
keywords: advance care planning; aging; birth order; decision-making; qualitative research