Abstract
Patients with high-risk acute myeloid leukemia (AML) often experience intensive medical care at the end of life (EOL), including high rates of hospitalizations and intensive care unit (ICU) admissions. Despite this, studies examining code status transitions are lacking. We conducted a mixed-methods study of 200 patients with high-risk AML enrolled in supportive care studies at Massachusetts General Hospital between 2014 and 2021. We defined high-risk AML as relapsed/refractory or diagnosis at age >= 60. We used a consensus-driven medical record review to characterize code status transitions. At diagnosis, 86.0% (172/200) of patients were "full code" (38.5% presumed, 47.5% confirmed) and 8.5% had restrictions on life-sustaining therapies. Overall, 57.0% of patients experienced a transition during the study period. The median time from the last transition to death was 2 days (range, 0-350). Most final transitions (71.1%) were to comfort measures near EOL; only 60.5% of patients participated in these last transitions. We identified 3 conversation types leading to transitions: informative conversations focusing on futility after clinical deterioration (51.0%), anticipatory conversations at the time of acute deterioration (32.2%), and preemptive conversations (15.6%) before deterioration. Younger age (B = 0.04; P = .002) and informative conversations (B = 22.79; P < .001) were associated with shorter time from last transition to death. Over two-thirds of patients were "presumed full code" at diagnosis of high-risk AML, and most experienced code status transitions focused on the futility of continuing life-sustaining therapies near EOL. These results suggest that goals-of-care discussions occur late in the illness course for patients with AML and warrant interventions to increase earlier discussions regarding EOL preferences.