Reconceptualizing the experience of surrogate decision making: reports vs genuine decisions.

Background: We propose a reconceptualization of surrogate decision making when patients lack an advance directive stating their preferences about life-sustaining treatment. This reconceptualization replaces the current 2-standard model of substituted judgment (based on the patient's prior preferences and values) and best interests (an assessment of how best to protect and promote the patient's health-related and other interests).

Methods: We undertook a conceptual analysis based on the ethics of informed consent, a qualitative study of how surrogates of seriously ill patients experience the surrogate's role, and descriptions of decision making.

Results: When the surrogate can meet the substituted judgment standard, the experience of the surrogate should be understood as providing a report, not making a decision. Surrogate decisions based on the best interest standard are experienced as genuine decisions, and the label "surrogate decision making" should be reserved to characterize only these experiences.

Conclusions: Physicians should identify clinically reasonable options and elicit the surrogate's sense of decision-making burden. Some surrogates will be able to make reports, and the physician should make a clear recommendation that implements the patient's reported preference. Some surrogates will confront genuine decisions, which should be managed by negotiating treatment goals. Requests by the surrogate that everything be done may represent a psychosocially burdensome decision, and support should be provided to help the surrogate work through the decision-making process.