Navigating the dual role of physician and clinician investigator in end-of-life research.

Abstract

The challenges of recruiting participants for end-of-life (EOL) research are multifaceted. The Last Gift study at the University of California San Diego, an observational study for people with HIV (PWH) with terminal illness, appeals to the altruism of potential participants and community of allied health providers. Involvement of the latter group highlights a potential ethical conundrum of a "dual role", as primary care providers (PCPs) navigate between clinical responsibilities to their patients, along with opportunities to discuss clinical research. To explore this conundrum and better understand study recruitment dynamics of the Last Gift study, we analyzed screening and enrollment data for a 12-month period (2022-2023). We found that PCPs can play an important role in the recruitment of PWH into EOL research, as having PCPs discuss the study with potential participants yielded more successful enrollments than contact by the study team alone. Our manuscript proposes considerations to mitigate dual role conflicts, including ensuring ethical awareness, prioritizing clinical care and offering strategies to involve PCPs in recruitment without causing unnecessary burden or coercion. These insights aim to guide similar EOL research efforts, emphasizing the need for balanced, ethical recruitment processes in the sensitive context of terminal illness.