A year ago, we began a project designed to align public messages from 10 organizations involved in advance care planning (ACP), palliative care (PC), and hospice to increase public engagement. By public messaging, we are referring to a well-established evidence-driven method of disseminating information at scale that enables the public to take action to protect their health. Our project plan was upended by the coronavirus disease 2019 (COVID-19) pandemic-but we used the opportunity to conduct focus groups during the pandemic that, compared with focus groups conducted before the pandemic, provide an important portrait of public perceptions of serious illness care that can be used to design for greater public engagement. Our findings can be summarized in three observations. First, misunderstanding of ACP, PC, and hospice is wide ranging and deep. Second, COVID-19 evokes its own brand of confusion and ambivalence that is distinct from other serious illnesses. And third, distrust of the health care system has become the new normal. Despite these findings, our focus group participants strongly endorsed five messaging principles (1) talk up the benefits, (2) present choices for every step, (3) use stories that are positive and aspirational, (4) invite dialogue-more than once, and (5) invoke a new team-of people who matter, clinicians, medical institutions, and community organizations who are ready to help. After listening to 100-word stories describing real patient experiences with ACP, PC, and hospice, our focus group participants expressed interest and appreciation. But to improve public engagement broadly, we need to explain our work to the general public in a way that makes them want to know more.
Keywords: COVID-19; advance care planning; hospice; messaging; palliative; public; serious illness.