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Understanding Advance Care Planning in oncology: Barriers, perceptions, and pathways toward patient-centered
Fulvio Bergamo Trevizan1, Carlos Eduardo Paiva1,2,3, Livia Costa de Oliveira1,4
1Research Group on Palliative Care and Health-Related Quality of Life (GPQual), Barretos Cancer Hospital, Barretos (SP), Brazil.
Cancer patients often misunderstand Advance Care Planning (ACP), facing barriers like cultural taboos and lack of clear information. Addressing these requires better education and institutional support for effective implementation.
Area of Science:
- Oncology
- Bioethics
- Health Communication
Background:
- Advance Care Planning (ACP) is crucial for patient-centered end-of-life care.
- Understanding patient perspectives on ACP is vital for effective implementation.
- Limited research exists on ACP in middle-income Latin American contexts.
Purpose of the Study:
- To explore cancer patients' comprehension of Advance Care Planning (ACP).
- To identify barriers to effective ACP implementation in clinical practice.
Main Methods:
- Qualitative descriptive study with 61 Brazilian women with breast cancer.
- Data collected via sociodemographic questionnaire and follow-up interviews post-informational brochure.
- Interviews analyzed using qualitative research reporting guidelines.
Main Results:
- Most participants struggled to define ACP; nearly 40% could not.
- Key barriers identified: cultural resistance to discussing death, family/physician reliance for decisions, and information gaps.
- A multilevel model revealed how cultural taboos, family dependence, and systemic inertia impede ACP.
Conclusions:
- Misconceptions and systemic barriers hinder ACP in routine oncology care.
- A conceptual framework explains the marginalization of ACP.
- Interventions should focus on patient education, professional communication, and institutional support.
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