Patient and Family Engagement during Treatment Decisions in an ICU: A Discourse Analysis of the Electronic Health Record∗

Objectives: Shared decision-making is recommended for critically ill adults who face major, preference-sensitive treatment decisions. Yet, little is known about when and how patients and families are engaged in treatment decision-making over the longitudinal course of a critical illness. We sought to characterize patterns of treatment decision-making by evaluating clinician discourse in the electronic health record of critically ill adults who develop chronic critical illness or die in an ICU. Design, Setting, and Patients: We conducted qualitative content analysis of the electronic health record of 52 adult patients, admitted to a medical ICU in a tertiary medical center from January 1, 2016, to December 31, 2016. We included patients who met a consensus definition of chronic critical illness (26 patients) and a matched sample who died or transitioned to hospice care in the ICU before developing chronic critical illness (26 patients). Interventions: None. Measurements and Main Results: Characterization of clinician decision-making discourse documented during the course of an ICU stay. Clinician decision-making discourse in the electronic health record followed a single, consistent pattern across both groups. Initial decisions about admission to the ICU focused on specific interventions that can only be provided in an ICU environment (intervention-focused decisions). Following admission, the documented rationale for additional treatments was guided by physiologic abnormalities (physiology-centered decisions). Clinician discourse transitioned to documented engagement of patients and families in decision-making when treatments failed to achieve specified physiologic goals. The phrase "goals of care" is common in the electronic health record and is used to indicate poor prognosis, to describe conflict with families, and to provide rationale for treatment limitations. Conclusions: Clinician discourse in the electronic health record reveals that patient physiology strongly guides treatment decision-making throughout the longitudinal course of critical illness. Documentation of patient and family engagement in treatment decision-making is limited until available medical treatments fail to achieve physiologic goals.