Twilight Grief: Conceptualizing Prolonged Pre-death Grief in Serious Chronic and Life-Limiting Illness.

Abstract

This paper introduces twilight grief as a concept to describe the prolonged, multidimensional grief experienced by individuals with serious chronic or life-limiting illness and their caregivers. Existing frameworks such as anticipatory, preparatory, ambiguous, and disenfranchised grief do not fully capture the ongoing, recursive nature of grief in the context of extended, uncertain illness trajectories. As medical advances extend life, patients and caregivers often occupy a liminal space marked by cumulative loss, shifting identities, and persistent uncertainty. Twilight grief may begin before diagnosis and persist for months or years, lacking clear resolution or social recognition. Unlike frameworks centered on bereavement or imminent death, twilight grief is defined by an ongoing focus on living amid decline and the coexistence of hope and sorrow. Frequently invisible and unsupported, twilight grief demands greater clinical and systemic attention. We outline its defining features, distinguish it from related concepts, and discuss implications for practice, policy, and future research.