Advance directives in Brazil: between normative effectiveness and the limits of end-of-life autonomy

Abstract

Advance directives constitute a central instrument for ensuring patient autonomy in end-of-life decision-making. In Brazil, their regulation is primarily grounded in Resolution No. 1.995/2012 of the Federal Council of Medicine, within a context marked by the absence of specific legislation, yet progressively expanded by other institutional frameworks, including the possibility of formalization through notarial registration, ethical recognition within the field of nursing, and the incorporation of related principles into palliative care guidelines within the Brazilian Unified Health System. This study aims to critically analyze the normative effectiveness of advance directives and the limits of their application in clinical practice from a bioethical and legal-institutional perspective. It is a qualitative, exploratory, and analytical study based on a review of scientific literature and documentary analysis of ethical and legal norms. The findings indicate that, despite the formal recognition of patient autonomy within the Brazilian normative framework, its effective implementation remains significantly constrained by structural factors, including legal uncertainty, the absence of clinical care protocols, gaps in professional training, the persistence of paternalistic models of care, and inequalities in access to palliative care. The analysis demonstrates that end-of-life autonomy remains predominantly formal, lacking the institutional conditions necessary for its effective realization. The study concludes that the effectiveness of advance directives depends on the articulation of legislative advances, the strengthening of public policies, and the transformation of healthcare culture to promote an autonomy that is effectively exercised and consistent with the principle of human dignity.