Understanding Hospice Patients’ Beliefs About Their Life Expectancy: A Qualitative Interview Study

Abstract

Background: Patients with advanced disease often overestimate their life expectancy, which potentially impacts decision making. Objective: To examine the nature and source of hospice patients’ life expectancy estimates, about which little is known. Design: Using semi-structured interviews, patients were asked to estimate their life expectancy and elaborate on their response. Setting/Subjects: Participants were hospice patients ( n = 20, 55% male; 60% cancer). Measurement: We conducted thematic analysis using open and focused coding. Results: Many participants had difficulty answering the life expectancy question and expressed uncertainty about when they would die. One-third overestimated their length of life relative to actual survival. The most common source of patients’ prognostic beliefs was knowledge about their body, including physical symptoms and change over time. Half of patients reported that a provider had given them a prognostic estimate, and one-third agreed with, or gave estimates consistent with, the provider’s estimate. Some patients said providers do not know prognosis or that time of death was unknowable. Conclusions: Key findings were that 1) many hospice patients had difficulty estimating life expectancy, and 2) hospice patients’ life expectancy estimates were frequently based on their body and not on information from medical providers. These findings have implications for measuring prognostic awareness, as valid assessment is a necessary component of determining whether prognostic awareness is beneficial for patients. Future research should examine how life expectancy estimates are associated with well-being and whether results extend to larger samples of patients with advanced disease not in hospice.

Latino advanced cancer patients’ prognostic awareness and familial cultural influences on advance care planning engagement: a qualitative study

“…1,2 Prognostic understanding is composed of multiple facets and can include terminal illness acknowledgment, recognition of incurable disease status (e.g., not curable), knowledge of the advanced stage of one’s disease, anticipation of a limited life expectancy measured in months rather than years, 3 and life expectancy based on perceived well-being, rather than a medical estimate. 2…”

“…1,2 Prognostic understanding is composed of multiple facets and can include terminal illness acknowledgment, recognition of incurable disease status (e.g., not curable), knowledge of the advanced stage of one's disease, anticipation of a limited life expectancy measured in months rather than years, 3 and life expectancy based on perceived well-being, rather than a medical estimate. 2 Most patients with advanced cancer fail to understand their prognosis accurately, with many patients believing their cancer is curable when it is not. 4,5 In a prior study of patients with advanced cancer, between 69% (lung) to 81% (colorectal) of patients inaccurately believed their incurable cancer was curable.…”

“…Informing patients about their terminal prognosis is a critical step during the end-of-life process to help patients make informed treatment decisions. 1,2 Prognostic understanding is composed of multiple facets and can include terminal illness acknowledgment, recognition of incurable disease status (e.g., not curable), knowledge of the advanced stage of one's disease, anticipation of a limited life expectancy measured in months rather than years, 3 and life expectancy based on perceived well-being, rather than a medical estimate. 2 Most patients with advanced cancer fail to understand their prognosis accurately, with many patients believing their cancer is curable when it is not.…”