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<p>Clinicians often struggle with asking patients with progressive, life-limiting illnesses about the point at which pursuing longevity no longer aligns with their values. While person-centered care encourages exploring patients’ goals and fears, directly asking individuals to identify conditions “worse than death” can inadvertently reinforce ableist assumptions that disability diminishes quality of life. Yet avoiding these discussions risks neglecting patient autonomy and failing to align treatment decisions with what matters most. This <i>Perspective</i> examines the ethical tensions clinicians face when discussing life-prolonging treatments and perceived intolerable states. Through a clinical case and review of current frameworks, we highlight how traditional approaches, often focused on functional decline, may unintentionally pathologize disability. We argue for a strength-based, person-centered approach that shifts conversations from identifying feared states to understanding sources of meaning, identity, connection, and purpose. Asking patients what helps them feel like themselves, what they value most, and what sustains their sense of dignity can yield actionable clinical guidance without relying on assumptions about suffering or worth. This reframing supports care plans that balance the desire to avoid harm with the preservation of autonomy and personhood, fostering end-of-life care that honors everyone’s values, experiences, and definition of living well.</p>

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Person-Centered Care at the End of Life: Challenging Ableism in Conversations About What Matters Most

  • 期刊论文

  • 发表日期：

    2026年6月16日

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  • Alixe Ménard,
  • Ramtin Hakimjavadi,
  • Daniel Kobewka

摘要

Clinicians often struggle with asking patients with progressive, life-limiting illnesses about the point at which pursuing longevity no longer aligns with their values. While person-centered care encourages exploring patients’ goals and fears, directly asking individuals to identify conditions “worse than death” can inadvertently reinforce ableist assumptions that disability diminishes quality of life. Yet avoiding these discussions risks neglecting patient autonomy and failing to align treatment decisions with what matters most. This Perspective examines the ethical tensions clinicians face when discussing life-prolonging treatments and perceived intolerable states. Through a clinical case and review of current frameworks, we highlight how traditional approaches, often focused on functional decline, may unintentionally pathologize disability. We argue for a strength-based, person-centered approach that shifts conversations from identifying feared states to understanding sources of meaning, identity, connection, and purpose. Asking patients what helps them feel like themselves, what they value most, and what sustains their sense of dignity can yield actionable clinical guidance without relying on assumptions about suffering or worth. This reframing supports care plans that balance the desire to avoid harm with the preservation of autonomy and personhood, fostering end-of-life care that honors everyone’s values, experiences, and definition of living well.