Defining Familial Interactions and Networks: An Exploratory Qualitative Study on Family Networks and Surrogate Decision-Making

OBJECTIVES: To characterize patient preferences for medical surrogate decision-makers in the ICU to capture the complexity of decision-making preferences and highlight potential conflicts between patients’ preferences and clinicians’ surrogate decision-maker identification in usual clinical practice. DESIGN: Prospective qualitative cross-sectional study. SETTING: Two ICUs in a quaternary referral center in the eastern United States. PATIENTS: Convenience sample of patients admitted to the ICU and their family members. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Twenty-six patient-family-clinician units were interviewed. Men were three times more likely than women to have a legally appointed decision-maker that matched their preferred decision-maker as expressed in the interview. Patients who were married or in a long-term relationship were the most consistent group of respondents, with 94% of them selecting their spouse or partner as the preferred decision-maker. The most common reasons for selecting a surrogate decision-maker were intangible themes such as feeling “known” by that person rather than having prior discussions about specific wishes or advance directives. CONCLUSIONS: Asking about a patient’s familial network and qualities they value in a surrogate decision-maker may aid ICU teams in honoring patients’ wishes for surrogate decision-making. This may be an important supplement to accepted legal hierarchies for proxy decision-makers and advance directive documents. Further studies with larger sample sizes could be used to shed light on the nuances of familial and relationship networks of a more diverse population of respondents.