Palliative Care Intervention to Improve End-of-Life Care Communication in AML and MDS

Key Message : Patients with acute myeloid leukemia and high-risk myelodysplastic syndrome do not engage in timely discussions about their end-of-life care preferences despite facing a limited prognosis. We conducted a multi-site randomized clinical trial to evaluate the efficacy of a palliative care intervention for improving end-of-life care communication for this population.

Abstract: Background
Patients with acute myeloid leukemia (AML) and high-risk myelodysplastic syndrome (MDS) do not engage in timely discussions about end-of-life (EOL) care despite limited prognoses, frequent hospitalizations, and significant symptoms that dramatically impair quality of life (QOL) (1-4).

Methods
We conducted a multi-site randomized clinical trial of palliative care (PC) intervention compared to usual care in 115 patients with new or relapsed/refractory AML and MDS receiving non-intensive therapy at two academic centers. Patients assigned to intervention met with PC twice weekly while admitted, and monthly as outpatients. Primary outcome was time from documentation of EOL care preferences to death. Secondary outcomes included rates of documentation of EOL preferences; hospitalization at EOL; and patient-reported QOL and psychological distress at 3 months.

Implications
Most patients (61.7%) died during the study; those assigned to PC had longer time from documentation of EOL care preferences to death (41 days vs 1.5 days). Rate of documented EOL care discussions was higher among PC intervention vs usual care group (96.5% vs 68.4%). Intervention patients were less likely to be hospitalized in the last 30 days of life (70.6% vs 91.9%) and had better QOL (138.6 vs 125.5).

This is the first randomized trial to demonstrate improved discussions and documentation of EOL care preferences in AML and high-risk MDS. These patients rarely discuss EOL preferences, or discussions occur in the last few days of life (6). This can lead to care inconsistent with patients’ wishes and is often traumatic for patients and families (5). Clinicians hesitate to discuss EOL due to unpredictable illness trajectory and worries about making patients distressed (3). A PC intervention significantly improved the timing and rates of documentation of EOL care preferences, reduced hospitalization at EOL, and improved QOL in patients with AML and MDS.

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2. Wang R, Zeidan AM, Halene S, et al. Health care use by older adults with acute myeloid leukemia at the end of life. J Clin Oncol 2017;35(30):3417-3424.

3. El-Jawahri A, Nelson AM, Gray TF, Lee SJ, LeBlanc TW. Palliative and end-of-life care for patients with hematologic malignancies. J Clin Oncol 2020;38(9):944-953.

4. Sekeres MA, Stone RM, Zahrieh D, et al. Decision-making and quality of life in older adults with acute myeloid leukemia or advanced myelodysplastic syndrome. Leukemia 2004;18(4):809-16.

5. Malakian A, Rodin G, Widger K, et al. Experience of care among adults with acute leukemia near the e nd of life: a scoping review. J Palliat Med 2024;27(2):255-264.

6. LoCastro M, Sanapala C, Mendler JH, et al. Advance care planning in older patients with acute myeloid leukemia and myelodysplastic syndromes. J Geriatr Oncol 2023;14(1):101374.