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 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 years ± 14 and 29% were African American, 26% were White, 26% were Asian/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 3 overarching categories of communication, emotion, and conflict: Communication – (1) unspoken expectations and (2) discussion of death as taboo; Emotion – (3) emotional stress and (4) feelings of loneliness; and Conflict – (5) family conflict and (6) 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.

Correlates and Predictors of Conflict at the End of Life Among Families Enrolled in Hospice

“…12 Not surprisingly, siblings report that conflict is higher when other siblings assert control and disregard the previously stated wishes of the parent. 18 The patient's clinical care needs and the phenomenon of ''family coming out of the woodwork'' at end of life are two primary conditions that underlie the processes of family conflict. Absent family members ''coming out of the woodwork'' is a frequently cooccurring condition, which refers to a previously uninvolved and/or distant family member arriving on the scene as the patient's condition deteriorates.…”

Ethical frameworks for surrogates’ end-of-life planning experiences

“…42 Several SDMs said, “Making the decision to stop treatment was easy, I firmly knew her wishes!” and “My mom’s living will made it clear what she wanted.” 22(p268) However, in a recent study including ethnically diverse SDMs, many adult children reported lack of knowledge regarding their parents’ EOL wishes/preferences due to lack of discussions. 41 Death was often considered a topic to be avoided. 41 …”

“…40,41,45 A reason for this is that they do not want to feel solely responsible or be blamed for their loved ones’ EOL care. 40 Moreover, family conflict around what would be best for their loved one makes surrogates’ decision making more difficult and stressful.…”

“…45 Family conflict can be reduced through early and ongoing discussions about each family member’s role in decision making and care for loved ones. 41 …”

Symptom Assessment Solutions for In-Home Supportive Services and Diverse Older Adults: A Roadmap for Change

“…Discussion guides were informed by the advisory board, palliative care and aging experts, and previous studies. [12][13][14] We asked about the potential role of an IHSS symptom assessment program, barriers and facilitators, and logistical factors that could impede or support the program's implementation (Table 1).…”