Understanding challenges and barriers to quality end-of-life care for patients with hematologic malignancies: a GIMEMA survey

Patients with hematologic malignancies often receive aggressive end-of-life (EOL) care, which may be partly related to hematologists’ discomfort with discontinuing aggressive treatments at EOL. It is therefore important to investigate how hematologists perceive EOL care and how this affects their clinical practice. We assessed a cohort of Italian hematological oncologists through a GIMEMA online survey to explore their attitudes toward standard measures of quality EOL care, their opinions on barriers to providing this care, and potential interventions. EOL quality measures were defined acceptable to hematologist if at least 55% of respondents agreed with their suitability. One-hundred eight-six hematologists completed the survey. Hematologists rated 8 of 13 EOL quality measures as highly acceptable, including no new chemotherapy, no intensive care unit admission, no intubation/cardiopulmonary resuscitation in the last 30 days of life, and hospice admission > 7 days before death. Major barriers to quality EOL care included unrealistic patient expectations, clinician concerns about taking away hope, and uncertainty about what to say. Moreover, 73% admitted to being unfamiliar with discussing goals of care (GOC) or advance care planning (ACP). Suggested interventions for improvement included increasing the availability and timely integration of palliative care, and access to home care services. In conclusion, Italian hematologists find most standard EOL quality measures acceptable, they identify barriers to quality care, and are open to interventions, including early integration of palliative care, to improve patients’ EOL care. However, they lack familiarity with GOC and ACP discussions, highlighting the need for communication skills training.