In this case study of two AMCs in the same state and health system that are oft-cited archetypes of AMCs on opposite ends of the spectrum of end-of-life treatment intensity, we observed substantial differences in LST decision making in the medical ICU. At the LI-AMC, LST was a means to an end whereas at the HI-AMC, it was an end in itself.
At the LI-AMC, time-limited trials of LST guided by provider-defined treatment goals (e.g., organ function recovery) was the default. When these goals weren’t met, withdrawal often involved negotiation with families who sometimes pressed for continuation, a process that providers perceived as a natural evolution of the encounter that they were confident in managing. Management involved redirection, and occasional circumnavigation, of family preference for the patient to survive the hospitalization to considerations of longer-term survivability and functional outcomes. The origin of these norms may be historical accident. We did not directly identify the sanctions reinforcing these norms, although we did observe the director of adult critical care services on the unit every day asking whether each patient still needed to be in the ICU, likely motivated by scarcity given the 1:9 ICU-to-ward bed ratio. Moreover, variation in approach to end-of-life decision making was minimized by hiring faculty who also trained at the AMC, among whom the norms had been internalized as values.
At the HI-AMC, open-ended LST guided by narrow physiologic objectives and the goal of survival to discharge was the default. These goals arose from specialist input and perceptions regarding patient treatment preferences based on assumptions, stereotypes, and narrow interpretation of written advance directives more often than facilitated conversations about patient values considered best practice.[47
] Withdrawal of LST, which was rare, appeared based on “physiologic futility” in the face of inexorable deterioration despite maximal LST, since critical care physicians and specialists didn’t agree that the patient was dying before that. This did not manifest as open conflict, but instead frustrated passivity on the part of critical care providers embodied by frequent complaint about specialist decision making, suggesting a “learned helplessness” based on prior reprisals. The origin of these patterns is unclear, although they may be promoted by the comparatively resource-rich 1:4 ICU-to-ward bed ratio and an organizational identity defined by doing things that others will not.
This is the first study of its kind to systematically compare the norms of LST decision making between 2 hospitals based upon their known end-of-life treatment intensity. Prior studies have found structural factors, such as bedsize, associated with hospital [24
] and ICU-level [50
] variation and others have serendipitously documented differences in norms of LST decision making between ICUs purposively sampled on other criteria [51
] In contrast to Cassell’s findings, the closed administrative model of staffing in the HI-AMC was not associated with greater control over LST decision making, perhaps because informal norms maintained the power of specialists over critical care providers despite formal norms regarding the attending of record.
Although our findings are not generalizable to other high- and low-intensity AMCs, they are robust, having followed best practices in qualitative research, including theoretical sampling; multiple coding; data, investigator, and methodological triangulation; and respondent validation. Limitations include exclusively focusing on decision making conditional upon admission to the ICU, although outpatient and ICU admission decision making result in differences in ICU case-mix (see Online Supplement
), and conducting relatively few patient/family interviews.
In conclusion, we are the first to describe behavioral norms that underlie differences between 2 high-profile AMCs’ patterns of end-of-life treatment intensity. Future research should expand the AMC sample and explore the mutability of norms in response to policy initiatives designed to reduce variation.