<p>Respect for autonomy is a central ethical principle in end-of-life care. However, due to cognitive decline, emotional distress, and the existential weight of end-of-life decisions, many patients may struggle to articulate or sustain their preferences without appropriate forms of support. The question, then, is not solely how to respect patients’ autonomy in end-of-life care, but how autonomy, understood in relational terms, can be genuinely fostered. To address this question, the article advances a normative and practice-oriented model of decision-making that integrates two approaches often treated separately: shared decision-making and supported decision-making. Taking an original position in the philosophical debate between procedural and substantive accounts of autonomy, and drawing on the ethical analysis of a composite clinical case, we ground our model in a transformative ethics of deliberation that links relational autonomy with democratic habits and skills. In doing so, the article bridges clinical experience and philosophical inquiry to offer a richer account of how autonomy can be meaningfully fostered in end-of-life care, while also opening new questions about the institutional conditions required for its realisation.</p>

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Towards a shared and supported decision-making model: fostering relational autonomy in end-of-life care

  • Nicolas Pujol,
  • Geraldine Foley,
  • Linda Hogan

摘要

Respect for autonomy is a central ethical principle in end-of-life care. However, due to cognitive decline, emotional distress, and the existential weight of end-of-life decisions, many patients may struggle to articulate or sustain their preferences without appropriate forms of support. The question, then, is not solely how to respect patients’ autonomy in end-of-life care, but how autonomy, understood in relational terms, can be genuinely fostered. To address this question, the article advances a normative and practice-oriented model of decision-making that integrates two approaches often treated separately: shared decision-making and supported decision-making. Taking an original position in the philosophical debate between procedural and substantive accounts of autonomy, and drawing on the ethical analysis of a composite clinical case, we ground our model in a transformative ethics of deliberation that links relational autonomy with democratic habits and skills. In doing so, the article bridges clinical experience and philosophical inquiry to offer a richer account of how autonomy can be meaningfully fostered in end-of-life care, while also opening new questions about the institutional conditions required for its realisation.