Caregivers’ perspectives on advance care planning and quality of life: a qualitative content analysis of online discussion forum posts

Background Advance care planning (ACP) aligns serious-illness care with patient values when capacity is lost. Whether ACP reliably improves goal-concordant care and family outcomes is mixed and evolving, and informal family caregivers, who carry out most decisions, are not consistently centered. How caregivers describe the ACP experience and its link to quality of life in public online forums is less examined. Methods We conducted an inductive qualitative content analysis of 40 initial posts and 263 responses ( n = 303) from two publicly accessible U.S. online caregiver communities, AgingCare and Reddit r/CaregiverSupport, collected in May 2026. Posts were included if they referenced a care decision, advance care planning (or its absence), or a quality-of-life concern for the recipient or caregiver. Two researchers coded independently and reconciled by consensus. The analytic lens focused on instances in which caregivers described ACP, its absence, or its enactment, and on how those moments were linked to quality of life. Results Six themes were identified. (1) Plans were often absent, outdated, or unenacted at the moment of decision. (2) Quality of life was contested between recipient and caregiver, with quality-of-life goals sometimes carried by the caregiver rather than the patient. (3) System and legal scaffolding, including eligibility, insurance, and document execution, narrowed what was possible regardless of preference. (4) Caregiver quality of life eroded as a structural feature of the role, including measurable clinical effects. (5) The decision was emotional, not procedural; questions of consent were paired with questions of moral responsibility. (6) The forums themselves functioned as informal ACP and quality-of-life support in real time. Conclusions In these forums, caregivers and recipients often held differing views of a livable life; those differences, with what insurance, eligibility, and law permitted, complicated how plans were carried out. Because the sample is small and forum content skews toward difficulty, these accounts are illustrative, not representative. Narrowing the gap between planning and quality of life may require treating caregiver quality of life as a planning outcome, addressing eligibility and authority before a crisis, bringing psychosocial support into the decision, and engaging the online spaces caregivers already use.