Understanding Advance Care Planning in oncology: Barriers, perceptions, and pathways toward patient-centered decision-making.

OBJECTIVES

To explore cancer patients' understanding of Advance Care Planning (ACP) and identify the main barriers hindering its effective implementation in clinical practice.

METHODS

This qualitative descriptive study included Brazilian women with breast cancer aged 18-75 years, all with preserved functional status, recruited by convenience sampling. Exclusion criteria were difficulty using online calls or significant communication impairment. Data collection involved a sociodemographic questionnaire and a follow-up interview. After receiving an informational brochure, participants were contacted by video call 14 days later and asked, "How do you understand what ACP is?" Interviews were conducted confidentially at home, transcribed, and analyzed according to qualitative research reporting guidelines.

RESULTS

Sixty-one women participated. Most had difficulty understanding ACP; nearly 40% could not define it. Main barriers included cultural resistance to discussing death, reliance on family members or physicians for decision-making, and lack of clear information. Many participants confused ACP with preventive care. A conceptual multilevel model was developed, showing how cultural taboos, family dependence, and systemic inertia interact to sustain barriers through a feedback loop in which cultural avoidance reinforces structural gaps and institutional neglect.

SIGNIFICANCE OF

RESULTS

This study provides evidence on how ACP is understood and misinterpreted by cancer patients in a middle-income Latin American setting, an area that remains underrepresented in the literature. By demonstrating that misconceptions, cultural taboos, and systemic barriers operate through a reinforcing multilevel process, the findings offer a conceptual framework that explains why ACP remains marginal in routine oncology care. The model highlights critical points for intervention, including patient education, professional communication, and institutional support, and is directly applicable to similar sociocultural contexts characterized by strong family involvement and biomedical dominance. These results have clear implications, supporting the integration of ACP as a proactive, relational, and value-based process rather than a late end-of-life intervention.