Clinicians' Understanding of Preferences and Values of People with Hematological Malignancies at the End of Life: Concurrent Surveys

Abstract

Background: People with hematological malignancies can deteriorate rapidly to a terminal event and have variable levels of engagement when transitioning to palliative and end-of-life care. Objectives: To describe end-of-life care values and preferences of people with hematological malignancies and explore whether these align with hematology clinicians' perceptions. Design: Two matched anonymous quantitative cross-sectional surveys explored: (1) patients' values and preferences around manner and timing of discussions regarding life expectancy and prognosis, involvement in decision making, and concurrent integration of palliative care with active treatment; and (2) clinicians' perceptions of their patients' values and preferences in relation to prognostic information. Settings/Participants: Concurrent online national surveys of people with hematological malignancies known to the Leukemia Foundation of Australia, and clinicians in Australia with membership to the Hematology Society of Australia and New Zealand. Results: Five hundred nine (38% response rate) patients (median age 64 [min 20, max 89, interquartile range 56-70]) and 272 clinicians (21% response rate) responded to the survey. If their health was deteriorating, most patients wanted honest prognostic and life expectancy information (87%); welcomed involvement in decision making (94%); felt they would be comfortable talking to the treating team about the possibility of death (86%); and would be comfortable seeing someone from a specialist palliative care team (74%). Clinicians generally underestimated most of these responses. Conclusion: Although our findings indicate that most people believe they would be comfortable discussing prognosis, life expectancy, and wishes at the end of life, clinicians were largely unaware of their preferences. This highlights the need to embed values clarification in routine care for each patient and family.

Keywords: end of life; hematological malignancies; palliative care; patient preference; survey.