Advance Care Planning Barriers and Worries in a Nationally Representative Sample of People with Serious Illness

Outcomes 1. Describe barriers to advance care planning in a nationally representative sample of older adults with serious illness.2. Understand worries people have in the setting of current or future serious illness, and place these in the context of how advance care planning must change to adequately address people's concerns. Key Message In a nationally representative sample of adults (20% of whom had serious illness), only 55% had discussed advance care planning (ACP) with loved ones, 22% discussed with clinicians, 31% documented ACP in writing. Yet, participants were very worried about not getting the best care because of their race/ethnicity, age, income, or disability. ACP must grow to adequately address people's concerns. Introduction Engagement in advance care planning (ACP) is low and poorly understood among people with serious illness. Objectives Assess associations between serious illness and three ACP outcomes: discussion with loved ones, discussion with clinicians, and documentation. Methods We administered a survey 4-5/2021 in English/Spanish and online/telephone to a nationally representative sample of adults. Primary predictor was having a serious illness (yes/no). Self-reported covariables were age, gender, race/ethnicity, income, metropolitan area, US region, marital status, importance of faith/spirituality, and self-efficacy. We also assessed barriers to documenting ACP and worries in the setting of current or future serious illness. Results Among 1,854 participants, 20% had serious illness. 66% had engaged in some form of ACP (76.5% among those with serious illness vs 62.6% without; P< 0.001); 55% discussed with loved ones, 22% discussed with clinicians, 31% documented. People with serious illness had higher odds than those without of discussing ACP with loved ones (aOR 1.57 [95% CI 1.19-2.07]) and with clinicians (2.16 [1.63-2.88]). There were no differences by serious illness in documenting ACP. Barriers to documenting ACP were: not having thought about it (43%), feeling their loved ones would know what they want (32%), having too many other things to worry about (31%). In the setting of current or future serious illness, 37% of participants were very worried about not getting the best care because of their race/ethnicity, age, income, or disability and 32% about their loved ones not making the best/right decisions. Conclusion In a nationally representative sample of adults, we found that ACP engagement is low, even among people with serious illness and particularly in terms of discussions with clinicians and documentation. Our novel findings understanding how people's worries about serious illness care may impact their engagement in ACP highlight areas in which ACP must grow to adequately address people's concerns. Keywords Scientific Research / Communication