Longitudinal Changes in Advance Care Planning Engagement, Patient Preferences, and Patient-Family Concordance in Japanese Breast Cancer Patients and Their Families: A One-Year Follow-Up Study

Abstract Background Advance care planning (ACP) is meant to be revisited, but whether patients’ end-of-life values, and the values their families attribute to them, change during breast cancer follow-up is unknown. We examined how ACP behaviours, patients’ own and family-attributed values, and patient–family agreement changed. Methods At a Japanese breast cancer centre, patients and family members answered the same 24-item questionnaire on end-of-life values and treatment preferences at two surveys, a median of 502 days apart. Family members answered as they believed the patient would. In the second survey, respondents were briefly informed of the first survey’s results and the value of revisiting planning. We compared the surveys in 284 patients and 164 patient–family dyads. The primary outcome was the number of items on which the patient and family disagreed. Results The proportion of patients who had asked someone to speak on their behalf rose from 44.3% to 54.6% (+ 10.3 percentage points, 95% CI [+ 3.5, + 17.1]). Seven of the 24 patient items changed significantly after multiple-comparison correction. Six rose, including freedom from pain and suffering, and the wish for maximal treatment fell (− 8.5 percentage points, 95% CI [− 13.7, − 3.2]). None of the family’s predicted answers changed. Discordant items fell from a median of 8 to 6 (Hodges–Lehmann change − 1.00, 95% CI [− 2.00, − 0.50]). Agreement change did not differ clearly by the onset of family discussion; disease worsening was too rare to assess. Conclusions Patients’ end-of-life values moved towards comfort, while their families’ predictions did not. Clinicians revisiting ACP should ask both patient and family again.