Utilization rate and outcomes of advance care planning in hematologic malignancies: A study using the trinetx research network

Abstract

Abstract Background: Advance care planning (ACP) helps align patients' medical treatment with their values and preferences, especially in the context of serious illness. Hematological malignancies often have uncertain trajectories, and patients can experience sudden deterioration or require intensive interventions. Despite this, ACP is not widely used in this population, possibly due to a sense of therapeutic optimism, evolving treatment options, and a lack of coordination within care teams. There is limited real-world data on ACP utilization in hematological malignancies. Understanding who receives ACP, and whether it impacts downstream care, can guide interventions to optimize end-of-life care. Methods: This retrospective analysis used the TriNetX platform, which provides de-identified health records from over 250 million patients. Data were queried on July 28-29, 2025. Patients with hematologic malignancies were grouped by the presence or absence of documented advance care planning (ACP) within five years of diagnosis. Demographics (age, sex, race) and comorbidities, categorized by organ systems, were extracted. Propensity score matching was applied to reduce baseline differences. Outcomes assessed within five years included mortality, palliative care use, and intensive care utilization. Results: Only 2.2% of patients had documented ACP. Female patients were slightly less represented in the ACP group (39.7% vs. 41.8%). A greater proportion of ACP patients were Not Hispanic or Latino (75.7% vs. 66.1%), while Hispanic or Latino individuals were underrepresented in both cohorts (5.6% vs. 5.1%). Black and Asian patients had slightly higher representation in the ACP group; White patient representation was similar between groups. Patients with ACP had significantly higher rates of comorbid conditions: circulatory (84% vs. 35%), endocrine/metabolic (85% vs. 36%), respiratory (72% vs. 26%), nervous (71% vs. 25%), and genitourinary (72% vs. 27%). This suggests ACP is more often documented among patients with greater disease burden. After 1:1 propensity score matching, ACP recipients were more likely to receive intensive care (13.3% vs. 8.0%), have palliative care encounters (14.1% vs. 7.1%), and experience five-year mortality (46.3% vs. 16.3%), all with p < 0.001. Conclusion: Despite the potentially life-changing nature of hematologic malignancies, ACP utilization remains low, with only 2.2% of patients having documented discussions. The lower proportion of females with ACP suggests potential gender disparities. Additionally, the significant difference in comorbidities indicates that patients with more complex health conditions are more likely to participate in or be offered ACP discussions. Notably, many patients underwent intensive care or died within five years without ACP, revealing a disconnect between care delivered and patient preferences. These findings highlight the need for earlier, more equitable ACP engagement, especially among underrepresented populations and newly diagnosed patients.