Involvement of Patients With Cognitive Impairment and Care Partners in Advance Care Planning Decision-Making: A...

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.

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.

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.

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.