End-of-life care aggressiveness and quality of death and dying in hemato-oncology

Evaluating the quality of dying and death in hemato-oncology is complex due to unpredictable disease courses and acute supportive care needs. This study investigated objective measures of end-of-life care aggressiveness and explored their relationship with caregiver-reported Quality of Dying and Death (QODD). We conducted a multicenter retrospective mortality follow-back cohort study of 644 adult hemato-oncology decedents across four medical centers, alongside a prospective quantitative substudy of 45 primary caregivers interviewed post-mortem using the validated QODD questionnaire. End-of-life care aggressiveness was evaluated using both a traditional dichotomous approach and a continuous composite score (0–6). In the primary cohort ( N =644), the dichotomous measure classified 87.3% of patients as receiving aggressive care, whereas the continuous composite score revealed a median score of 2.0 (mean = 2.13, SD = 1.33), with almost 60% of decedents accumulating two or fewer interventions. Overall, 71.9% of patients died in a hospital setting. In the caregiver subsample ( n =45), the mean overall QODD score was moderate (62.53, SD = 10.57). Bivariate analysis revealed no statistically significant correlation between the continuous care aggressiveness score and overall QODD ratings, though subscale analyses indicated lower QODD ratings during the terminal phase for in-hospital deaths compared to home deaths. In this exploratory cohort, no statistically significant association was detected between objective care aggressiveness scores and subjective caregiver appraisals. These preliminary findings raise questions regarding the uncritical use of frameworks originally developed for solid tumors, which may not directly capture the unique clinical realities of hematologic malignancies where acute interventions often reflect essential supportive stabilization rather than therapeutic excess. Our results highlight the value of considering disease-specific supportive demands and encourage future large-scale studies to explore whether objective utilization and subjective experiences represent distinct, multidimensional facets of end-of-life care in this population.