Abstract
Context. The outcome of adolescents and young adults (AYA) aged 15 to 25 with cancer has improved, with five-year survival rates now exceeding 85%. However, disease progression remains the leading cause of death in this population. AYAs face unique challenges that require tailored oncologic, psychosocial, and supportive care approaches. Palliative care, aimed at improving the quality of life for patients with life-threatening illnesses, is crucial in this context. Although data remain limited in the field, some evidence suggests palliative care may enhance end-of-life (EOL) care in this population. This study aimed to describe EOL care practices in AYA with hematologic malignancies receiving palliative care.
Patients and methods. We conducted a retrospective, single-center descriptive study including patients who (1) died between January 2020 and July 2025, (2) received care for hematologic diseases in the AYA unit at Saint Louis Hospital and (3) had a collegially validated palliative care decision documented in the medical record. Data was extracted from medical records. The primary objective was to assess EOL care using the HI-EOL (High Intensity-EOL) and the MI-EOL (most Invasive-EOL) scores as previously described. Secondary objectives included characterization of the patient population, description of EOL management, with a specific focus on transfusion practices.
Results. A total of 38 patients were included. Most had acute leukemia (n=34, 90%), the remaining had lymphoma (n=4, 10%). Median age at diagnosis was 17 years (range: 10-26), and 20 years at death (15-30). Patients received a median of 3 lines of therapy (1-7). Four patients (10%) were refractory to first-line therapy. Twenty-four patients (63%) underwent hematopoietic stem cell transplantation (HSCT), 11 (29%) received CAR T-cell. Most patients (n=32, 84%) were refractory to the last treatment. Disease progression was the main reason for transitioning to palliative care (n=33, 87%), which also represented the leading cause of death (n= 32, 84%). Other conditions indicating palliative care transition were complications of allo-HST (n=3, 8%), infectious complication (n=1) and deterioration of general condition (n=1). The median time from palliative care decision to death was 26.5 days (2-180) and from the last chemotherapy to death was 37.5 days (1-278). Ten patients (26%) received chemotherapy after the documented palliative care decision. A majority of patients were seen by the mobile palliative care team (n=24, 63%) with a median time of 7 days (0-51) after the palliative care decision.
Sixteen patients (42%) met at least one HI-EOL criterion. All received chemotherapy within the 14 days before death, which was the only criteria of the HI-EOL score in our cohort. Two patients underwent cardiopulmonary resuscitation, thus meeting one MI-EOL criterion. Among the patients evaluated by the mobile palliative team, 16 out of 24 (67%) had no HI-EOL criteria, compared to 6 out of 14 (43%) who were not (p=0.198).
Twenty-seven patients (73%) received at least one transfusion of red blood cells (RBC) and 33 (89%) a transfusion of platelets during the last month of their life. Notably, 24 patients (65%) had a platelet transfusion and 12 (32%) a RBC transfusion during the final five days of life.
Among the patients who expressed a preference for the place of death (n=19, 50%), 12 (63%) wished to die at home. However, only five patients (13.2%) died at home, while the majority (n=27, 71%) died in the AYA unit. Three patients died in their local hospital. 1 in a specialized palliative care unit and 1 in an intensive care unit.Discussion. This study highlights several challenges in EOL care of AYAs with hematologic malignancies. The late integration of palliative care, often within the final weeks of life, may reflect the aggressive nature of these diseases, and/or the clinical reluctance to transition from curative to palliative intent. While involvement of the mobile palliative care team appeared to be associated with lower EOL care intensity, the limited sample size precludes definitive conclusions. Importantly, barriers such as limited access to transfusion support outside the hospital and the lack of dedicated AYA palliative services hinder the ability to respect patient preferences for EOL care, particularly home death. Improving collaboration between hematologists and palliative care specialists is essential to optimize EOL care in this vulnerable population.
