Narrative identity at the end of life: a qualitative analysis of dignity therapy interviews from an existential perspective.

backgroundConfronting terminal illness and the prospect of death and dying can severely undermine an individual's sense of identity, meaning and purpose in life, leading to existential suffering, increasing hopelessness, depressive symptoms, and death anxieties.

objectivesThis study explored how narrative approaches can alleviate existential suffering, promote emotional healing, and consolidate identity for individuals confronted with death and dying. Specifically, the study aimed to (1) analyze dimensions of identity reflected in Dignity Therapy (DT) legacy documents from a randomized controlled trial, applying Ricoeur's framework of selfhood and identity; (2) deepen the understanding of existential suffering in relation to identity and its potential transformation into meaningful adaptation; and (3) synthesize these findings into a conceptual Model of Narrative Identity at the End of Life.

methodsThirty-two DT interviews were analyzed using MAXQDA software for qualitative data analysis. An inductive category development approach was employed to construct a three-tiered coding system capturing key dimensions of identity. Drawing on Ricoeur's framework of selfhood and identity, a hermeneutic and existential-phenomenological approach was employed to deepen understanding of the lived experiences and narrative reconstruction of self and identity in the context of vulnerability, suffering, loss, and the approaching end of life.

resultsThe identified dimensions of narrative identity included "origin", "family", "movement", "societal", "work", "recreation", "disruption", "experience of the now", "feelings", "sense of self", and "future". Analysis of patients' narratives yielded an in-depth understanding of existential suffering, as well as the contrasting experiences of authenticity, integrity, and wholeness at the end of life. Three core mechanisms emerged through which narrative work may mitigate existential suffering while reaffirming selfhood and identity: (1) cultivation healing connections and embracing hope; (2) the search for coherence and meaning-making; and (3) inner growth and transformation. These findings informed the development of a conceptual Model of Narrative Identity at the End of Life.

conclusionsConfronting death and dying is challenging, yet it may serve as a catalyst for increased self-awareness, self-growth, and transformation towards greater authenticity. Storytelling is a simple yet powerful tool for reclaiming narrative identity and alleviating existential suffering during a time marked by loss of control and powerlessness. Our Model of Narrative Identity at the End of Life illustrates how narrative work facilitates depth work, through which healing connections and hope can be embraced, enabling meaning-based adaptation to terminal illness, thereby empowering individuals to retain a sense of control, agency, and autonomy, even in the face of their own mortality.

trial registrationThis study was registered with Clinical Trial Registry (ClinicalTrials.gov - Protocol Record NCT02646527; date of registration: 04/01/2016).