Involvement of Patients With Cognitive Impairment and Care Partners in Advance Care Planning Decision‐Making: A Qualitative Study

BACKGROUND: Supporting involvement and engaging care partners in advance care planning (ACP) conversations is a best practice principle that is especially important in the context of cognitive impairment. This study applied an existing decision-making framework (1) autonomous, (2) shared, (3) delegated, and (4) surrogate to describe types of patient and care partner involvement in ACP. METHODS: Deductive content analysis of transcripts from ACP conversations involving 88 older adults with mild (n = 15), moderate (n = 13), and severe (n = 60) cognitive impairment and care partners. RESULTS: Patient involvement in ACP decision-making was highly related to patient level of cognitive impairment. Many older adults with mild cognitive impairment (60%) were able to state clear preferences for end-of-life treatments. With higher severity of cognitive impairment, patients were more reliant on care partners and required a greater level of support. Among older adults with severe impairment, surrogate decision-making with known preferences was most common (48.3%). Delegated decision-making was rare (n = 2) and driven by patient preference rather than cognitive limitation. Care partners shared a common role in supporting patient involvement in each decision-making type, but the required level of support increased with the severity of cognitive impairment. CONCLUSIONS: The findings underscore the vital and evolving role of care partners in ACP for older adults with cognitive impairment. Supporting and intentionally involving care partners early-while respecting patients' preferences for autonomy-may help reduce decisional burden and promote person-centered ACP as cognitive impairment progresses. These insights can inform clinical guidelines on dyad-centered approaches to ACP.