“Bad memories and a big debt—not a legacy I want to leave.” Patient perspectives on cancer treatment choices, cost of care, and legacy goals.

Abstract

283 Background: Legacy—how one hopes to be remembered and how one impacts others after death—is an unexplored and important dimension of care decision-making for people facing serious illness. This study examined 1) how people with cancer facing serious illness conceive of legacy, 2) the types of treatment choices people make with legacy in mind and 3) if and how patients want to discuss their legacy goals with their care team. Methods: We conducted a scoping literature review to characterize the legacy construct and identify legacy-related treatment choices. We conducted semi-structured telephone interviews with cancer patients at an integrated health system who had received at least 1 palliative care consult in the past year. Interview topics included patient definitions of legacy, the importance of legacy over time, and what mattered most as they made treatment choices. We used Atlas.ti to thematically analyze interview transcripts. Results: In the scoping review, we identified three major intersecting legacy goals that influence patients’ care choices: being remembered as an individual, being remembered for one’s social role, and impacting others' well-being. Financial legacy—the material artifacts related to one’s estate—cut across all three legacy domains and emerged as a substantial factor at the intersection of care decision-making and legacy planning. In qualitative interviews, many people worried that the cost of care and necessary medications would negatively impact the legacy they were able to leave behind. Examples included choosing less expensive or forgoing treatment to preserve their financial legacy (e.g. not wanting to lose their house because of medical costs); feeling shame at experiencing financial hardship due to cancer care costs (“I don’t want to be remembered begging people for gas money to get to my appointments”); and death planning with cost in mind (“I don’t want to leave a horrible mess behind.”). Few people had discussed their legacy goals with their health care team, but many wanted support to do so, especially as these goals were threatened by high out of pocket costs. Conclusions: People with cancer consider their legacy goals, and in particular their financial legacy, as they make treatment choices. Further work is needed to identify how and for whom legacy goals should be addressed as part of patient-centered care, including for whom legacy and financial legacy is most important.