The Impact of Family Social Identity on Ethical Decision-Making in the NICU

Little is understood on how intersectionality and social background of patients and families influence ethical and clinical decision-making, particularly in the critical care setting. This study aims to explore how family identity and socioeconomic features influence the perceived medical appropriateness and ethical permissibility of treatment options for NICU patients when controlling for patient diagnosis and prognosis.

We conducted focus groups (n = 7) with interdisciplinary Neonatal Intensive Care Unit (NICU) health care professionals (N = 33) at a single Level IV NICU over an 8-month period. Participants reviewed and discussed a hypothetical case of a neonate with severe neurological impairment. Focus groups received the same medical information regarding the patient and prognosis but were provided 1 of 2 social scenarios where the family's contextual information (parental education, first language, religion, medical literacy, access to care, family structure, and parental presence at the bedside) were intentionally varied. Comparative thematic analysis was performed.

Critical differences were identified in the way participants: (1) responded to parental requests for continued intervention and (2) incorporated the family's education, income, geography, medical literacy, and active presence on the unit in their medical recommendations. Specifically, we found that teams were more open to the idea of accommodating parental requests in the context of increased family resources, than they were in the context of lower family resources.

Interpretation of family social context by NICU care teams can produce disparities in which interventions are offered, and which parental preferences are accommodated, underscoring the impact of family and social characteristics on clinical care.