DO ADVANCE DIRECTIVES YIELD DISPOSITIVE INFORMATION ABOUT TREATMENT PREFERENCES FOR INCAPACITATED, CRITICALLY ILL PATIENTS?

Purpose: Although the traditional focus of advance care planning is that patients make decisions in advance that will then guide their care when they lose capacity, there is little data to inform whether the information typically included on advance directives actually allows this. We therefore sought to determine how patients’ previously expressed treatment preferences are discussed in ICU family meetings and how often those prior preferences serve as dispositive information about ICU treatment decisions.

Method: We audio-recorded 249 ICU family conferences at five U.S. academic medical centers that involved goals of care discussions for patients with acute respiratory distress syndrome at high risk of death or severe functional impairment. We used constant comparative methods to construct and iteratively refine a codebook that identified discussion around patients’ previously stated treatment preferences. Information about patients’ previously expressed treatment preferences was considered dispositive when it led to a decision about ICU treatments. Two coders independently coded conference transcripts and disagreements were reviewed in multi-disciplinary team meetings until consensus was achieved. 

Result: Patients’ previously expressed treatment preferences were discussed in 27% (68/249) of conferences. In these 68 conferences, discussion about the patient’s treatment preferences was initiated by clinicians in 48% and by families in 52%. Information about the patient’s treatment preferences was dispositive in only 1 of the 68 conferences in which the patient’s treatment preferences were discussed. Although 61% (153/249) of families reported having a previous discussion with the patient about treatment preferences, 73% (112/153) of conferences with these families contained no discussion about the patient’s prior directives. Despite reporting what they know about the patient’s treatment preferences, surrogates frequently asked about other treatment options. Clinicians responded to non-dispositive information about patients’ treatment preferences by talking about prognostic uncertainty, exploring whether the treatment preferences are applicable to the current clinical setting, and describing what the future might look like for the treatments being discussed.

Conclusion: Patients’ prior directives do not lead directly to a decision about ICU treatments without requiring interposed judgement. Advance care planning should prepare surrogates to act as more than mere reporters of patients’ treatment preferences.