Illness Understanding and Advance Care Planning in Patients with Advanced Lymphoma

Background: The prognosis of an aggressive lymphoma can change dramatically following failure of first-line treatment. This sudden shift is challenging for the promotion of illness understanding and advance care planning (ACP). Yet, little is known about illness understanding and ACP in patients with aggressive lymphomas. Objective: To examine illness understanding, rates of engagement in ACP, and reasons for lack of ACP engagement in patients with advanced B cell lymphomas. Design: Cross-sectional observational study. Setting/Subjects: Patients ( n  = 27) with aggressive B cell lymphomas that relapsed after first- or second-line treatment treated at a single urban academic medical center. Measurements: Participants were administered structured surveys by trained staff to obtain self-report measures of illness understanding (i.e., aggressiveness, terminality, curability) and ACP (i.e., discussions of care preferences, completion of advance directives). Results: The majority of patients reported discussing curability (92.6%), prognosis (77.8%), and treatment goals (88.9%) with their medical team. Yet, less than one-third of patients reported being terminally ill (29.6%) and having incurable disease (22.2%). Most patients had a health care proxy (81.5%) and had decided about do-not-resuscitate status (63%), but the majority had not completed a living will (65.4%) or discussed their care preferences with others (55.6%). Conclusions: The accuracy of lymphoma patients' illness understanding following first-line treatment is difficult to determine due to the potential for cure following transplant. However, this study suggests that a large proportion of patients with advanced B cell lymphomas may underestimate the severity of their illness, despite discussing illness severity with their medical team. Providing patients with information on prognosis, and the ACP process may increase engagement in ACP.