Abstract

BackgroundMost end-of-life decisions are made by family members. Current ethical guidelines for family decision making are based on a hierarchical model that emphasizes the patient’s wishes over his or her best interests. Evidence suggests that the model poorly reflects the strategies and priorities of many families.MethodsResearchers observed and recorded 26 decision-making meetings between hospital staff and family members. Semi-structured follow-up interviews were conducted. Transcriptions were analyzed using qualitative techniques.ResultsFor both staff and families, consideration of a patient’s best interests generally took priority over the patient’s wishes. Staff generally introduced discussion of the patient’s wishes for rhetorical purposes, such as persuasion. Competing moral frameworks, which de-emphasized the salience of patients’ autonomy and “right to choose,” played a role in family decision making.ConclusionsThe priority given to the patients’ wishes in the hierarchical model does not reflect the priorities of staff and families in making decisions about end-of-life care.