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

Abstract

Background

Confronting 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.

Objectives

This 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.

Methods

Thirty-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.

Results

The 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.

Conclusions

Confronting 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 registration

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

Supplementary Information

The online version contains supplementary material available at 10.1186/s12904-025-01876-2.

Give sorrow words. The grief that does not speak whispers your over fraught heart and bids it break [1]. (Grief that hides in silence will whisper in your heart and break it)

– Shakespeare, Macbeth

Background

Having to confront an incurable illness, suffering, death, and dying is an assault on the integrity of the whole person, affecting physical, psychological, social, and existential dimensions [2]. Advanced incurable diseases are often accompanied by a substantial symptom burden and rapid and dramatic losses as the disease progresses, including deteriorating physical abilities; reduced health; the loss of one’s future, autonomy and independence; pain; and disruption in social roles, relationships, and personal engagement, all of which can contribute to increasing feelings of distress, depressive symptoms, and death anxiety [3, 4]. This gradual sense of disconnection can severely damage an individual’s sense of identity, meaning and purpose in life, potentially leading to a profound existential crisis, and raising fundamental questions such as: Who am I? Why me? Why now? How well did I live? Was I the person I aspired to be? What will happen (to me; to my children; my family) when I die? [5].

Existential suffering frequently occurs when someone is approaching the end of life, arising from death anguish, a sense of disconnection, loss of hope, and the realization that life has lost its meaning and purpose about one’s sense of self [6]. Existential suffering is one of the most debilitating conditions affecting individuals at the end of life, yet it remains poorly defined, inadequately understood, and insufficiently addressed due to limited interventions and a lack of appropriate training for healthcare providers in how to best support terminally ill individuals experiencing existential suffering [7].

The concept of post traumatic growth (PTG), describes the process of psychological adaptation following trauma and suffering, encompassing five dimensions of positive changes, including increased appreciation of life, improved relationships with others, greater sense of personal strength, a re-evaluation of life’s priorities, and a deepened spiritual and existential understanding [8]. While the PTG model has been applied to context of surviving severe illness – including cancer, HIV/AIDS or acute myocardial infarction [9, 10] – it may not fully capture the complex pathway through end-of-life suffering, where individuals are forced to confront the approaching end of life [7]. The psychological mechanisms underlying the potential transformation from existential suffering to meaningful adaptation in the context of terminal illness remain poorly understood. Addressing this gap is essential for developing effective interventions and to provide appropriate support for both, terminally ill individuals and their caregivers.

Existential philosophy has extensively debated human suffering, particularly in relation to death and dying, as it forces individuals to confront the existential questions about the meaning and purpose of life, and the nature of human existence. Paul Ricoeur [11] explores selfhood and identity in the context of illness and suffering through the dialectic relationship between idem (sameness) and ipse (selfhood) identity. Idem identity refers to the stable and enduring characteristics of a person, like origin, genetics, and personality traits. In contrast, ipse identity pertains to the evolving, dynamic aspects of the self, shaped by lived experiences, emotional connections, interactions, self-reflection, and interpretation. According to Ricoeur, these two dimensions of identity converge through narrative work, allowing individuals to build their narrative (personal) identity that integrates past, present, and future into a coherent sense of self. Existential suffering arises when the coherence of ipse identity is disrupted by adverse life events – such as illness, loss, trauma, or the confrontation with mortality – undermining the individual’s sense of self and challenging their roles, core values, and sense of meaning in life [11].

Ipse identity corresponds to what Heidegger describes as “mineness” (Jemeinigkeit), referring to the existential ownership over one’s being (Dasein) – a sense of continuity, agency, and control, grounded in a feeling of “being connected in the world with others”. This identity is shaped by subjective experiences, including personal perspectives, thoughts, emotions, relationships, ethical commitments, and sense of care for others. Heidegger argues, however, that when ipse identity is fundamentally disrupted, it cannot be restored solely through narrative reconstruction; rather, it demands existential transformation, which in his view, can only be achieved through the direct confrontation with the reality of death. This shift from disrupted sense of identity to an acceptance of one’s mortality reflects a more nuanced understanding of existential suffering – not merely as a source of distress, but as a potential catalyst for transformation, including personal growth, the development of an authentic self, and deepened relationships [12]. Similarly, Frankl [13, 14] emphasizes the human capacity to find meaning and hope even in the face of extreme adversity, further reinforcing the notion that existential suffering can be a transformative force for personal development.

However, for many, the awareness of the impending end of life generates existential distress and exacerbates feelings of loneliness [15], as it forces them to confront the impermanence of their existence and the search for meaning [12]. Furthermore, many terminally ill individuals do not have the energy and strength to engage in this existential confrontation on their own. In addition, the current healthcare system frequently reduces individuals with incurable illnesses to mere diagnoses or research subjects, further detaching them from their personhood or life stories. This reduction often leads to impersonal and, at times, dehumanizing medical care, thereby exacerbating the loss of identity and intensifying existential suffering in the dying [16]. A significant component of existential suffering arises also from healthcare professionals’ lack of preparedness to engage authentically and emotionally present in end-of-life encounters [17].

Offering terminally ill individuals the opportunity to share their stories is an effective intervention for addressing the gap between medical care and the lived experience of approaching the end of life. The narrative process helps ensure that terminally ill individuals feel heard, valued, and respected, while aligning care with their personal values, biographies, and sources of meaning [18]. Illness narratives play a critical role in meaning-making and in preserving selfhood and identity, even amidst the disruptions of serious illness, existential suffering, and the confrontation with mortality, by enabling individuals to be understood within the context of their life stories [19]. Furthermore, narrative approaches offer a meaningful counterbalance to the reductionist, problem-oriented paradigm of medicine, by promoting a more holistic and person-centered model of care [20]. Interventions such as logotherapy [13], Dignity Therapy (DT) [21], CALM Therapy [22], or meaning-centered group psychotherapy [23] exemplify narrative approaches that support the integration of life disruptions into a coherent and meaningful whole, thereby mitigating existential suffering and reinforcing a stable sense of self and identity. Moreover, research suggests that attending to these illness narratives strengthens relationships between patients and healthcare providers, ultimately improving patient outcomes [24].

This paper argues that storytelling is a simple yet powerful, albeit overlooked, intervention for consolidating a fragmented identity, alleviating existential suffering, and promoting emotional healing and transformation at the end of life. Building on this premise, we explore how narrative approaches can help preserve identity, alleviate existential suffering, and promote meaningful adaptation to terminal illness. The study’s objectives were threefold: first, to analyze dimensions of identity reflected in DT legacy documents from a randomized controlled trial (RCT), applying Ricoeur’s framework of selfhood and identity; second, to deepen the understanding of existential suffering in relation to identity and its potential transformation into meaningful adaptation; and third, to synthesize these findings into a conceptual Model of Narrative Identity at the End of Life, grounded in existential-phenomenological theories.

Methods

Study design and participants

This mixed-method study analyzed 32 DT interviews (legacy documents) obtained from a multicenter RCT designed to investigate the effectiveness of the DT intervention in cancer patients and their family caregivers (FCs) (see elsewhere [25]). Eligible patients were required to be 18 years or older, diagnosed with terminal cancer (i.e., life expectancy of six months or less), and have a Hospital Anxiety and Depression Scale (HADS) score of at least eight points during pre-screening. A minimum HADS score of 6 indicates clinically relevant symptoms of anxiety and depression in cancer populations [26]. Individuals with cognitive impairments like dementia or delirium, those too physically unwell to meet the study’s demands, and those unable to communicate in German were excluded. Study participants were recruited from the University Hospital Zurich, the Zurich Lighthouse, and the Susenberg Clinic. Written informed consent was obtained from each participant prior to their involvement in the study. Participants could withdraw from the study at any time. DT interviews were conducted by four trained psycho-oncologists with over three years of clinical experience, under ongoing supervision by AS. Details regarding data processing, including transcription, data entry, data management, coding, and anonymization of excerpts are available in the original study [25]. This study was approved by the Ethics Committee of the Canton Zurich (KEK), Switzerland (KEK-ZH-Nr. PB_2016-01275) and registered with ClinicalTrials.gov (Protocol Record NCT02646527). All study procedures adhered to the World Health Organization’s Declaration of Helsinki.

Dignity Therapy

Dignity Therapy, developed by Harvey Chochinov [21], is grounded in a narrative framework and conceptually builds on Ricoeur’s theory of selfhood and identity, aiming to alleviate distress and promote dignity in individuals nearing the end of life. By facilitating guided reflection on meaningful moments, life roles, accomplishments, values and messages individuals wish to leave behind, participants are supported in constructing a coherent life narrative. This process culminates in the creation of a personalized written legacy, referred to as the “generativity document”. It supports the narrative reconstruction of identity, affirms personhood, and dignity, and strengthens agency, autonomy, and a sense of continuity in the face of existential threat.

The first part of DT allows terminally ill individuals to reflect on who they are and what they have proudly achieved. This process aligns with Ricoeur’s concept of idem identity (sameness), helping individuals to maintain a sense of identity including their roles, relationships and a sense of self despite disease progression, changes in physical appearance, and confrontation with mortality.

The second part of the DT focus on finding acceptance, meaning, and eventually transcendence – understood here as the pursuit of generativity and legacy – by encouraging individuals to reflect on messages they wish to leave behind or things they want to be remembered for. This process aligns with Ricoeur’s concept of ipse identity (continuity of a person), emphasizing moral values, future hopes, and enduring connections beyond death.

Many of the benefits of DT arise during the interview itself. The act of telling and entrusting one’s story in a state of profound vulnerability, sharing emotions, and being truly heard “body to body and heart to heart” helps terminally-ill individuals to find peace and comfort with life circumstances, fostering tolerance of uncertainty, and enhancing resilience for what lies ahead, which restores a sense of control, agency, and autonomy [27]. This approach aligns with Chochinov’s understanding of the essence of medicine and dignity conserving care [28]. Details on the way DT was implemented within the RCT are provided elsewhere [25].

Qualitative analysis

Qualitative analysis was performed following Mayring’s approach [29], using the MAXQDA software for data management and coding [30]. Mayring’s methodology is flexible, allowing the integration of both inductive category development (deriving categories directly from the data) and deductive category application (using predefined categories based on a theoretical framework).

Following this dual strategy, the analysis proceeded in tow steps. First, an inductive, summarizing, category-development process was conducted, resulting in a ternary degree system. A total of 4,307 items were coded and categorized according to the interpreted feelings, meanings, and intents underlying the patients’ quotations. To preserve the richness of the data and capture potential multiple meanings, individual items could be assigned to multiple categories. Item formatting was not standardized to maintain the integrity of the text: a single sentence could be divided into multiple items, or multiple sentences could be combined into one item.

Inter-rater reliability was assessed by a second rater (AS), who coded a random sample of 20% of the quotations initially coded by the first author (PD), ensuring the trustworthiness and validity of research findings. This proportion is consistent with established qualitative research practices [31, 32]. Discrepancies were resolved through discussion, resulting in adjustments of code categories and coding rules. Inter-rater reliability was calculated using Cohen’s kappa across all main categories and themes (second degree of the model). Ultimately, 294 independent items were coded.

In a second, deductive step, Ricoeur’s framework of selfhood and identity guided a hermeneutic and existential-phenomenological analysis to deepen the understanding of the lived experiences of terminally ill individuals embedded within the DT narratives. Specifically, the analysis explored how terminally ill individuals makes sense of existential suffering and the dynamic and complex processes of meaning-making, personal growth, and identity reconstruction in the context of vulnerability, suffering, loss, and the approaching end of life [33]. To ensure transparency, consistency, and alignment with rigorous methodological standards, we used the Standards for Reporting Qualitative Research (SRQR) checklist [34] (see additional material).

Results

Sample characteristics

The participants mean age was 55.6 years (SD = 15.6), with ages ranging from 18 to 80 years. Most patients were female (53%) and married or in a relationship (72%), and 31% held a college or university degree. In the overall cohort, the most common underlying malignancies were gastrointestinal and skin cancer (25%), followed by lung cancer (19%), and gynecological cancer (16%). Sociodemographic and disease characteristics are presented in Table 1.

Table 1.

Patients’ sociodemographics and medical characteristics

	Patients (N = 32)
	Mean	SD
Age	55.6	15.6
	%
Gender N
Male	47%
Female	53%
Relationship status
Married or living with partner	72%
Divorced or separated	12%
Widowed	-
Single	16%
Education
Obligatory	25%
Apprenticeship	28%
High school	9%
College/university	31%
Other	7%
Employment status
Full time	38%
Part time	28%
Retired	19%
Unemployed due to disability or illness	10%
Other	5%
Religion
Catholic	22%
Protestant	28%
Other Christian denomination	9%
Islamic	3%
No affiliation	38%
Primary tumor site
Skin	25%
Gastrointestinal	25%
Lung	19%
Gynecological	16%
Head & neck	6%
Sarcoma	6%
Prostate	3%

Inter-rater variability

Inter-rater reliability was calculated using Cohen’s kappa across all 294 items, 39 code categories, up to the second degree of the model. The code assignment ratings achieved excellent inter-rater reliability, with an overall Cohen’s kappa value of 0.84 (CI 0.79; 0.88).

Dimensions of identity in legacy documents of Dignity Therapy

The generativity documents generated through DT were analyzed employing Ricoeur’s framework of idem and ipse identity. Qualitative analyses of the narrative accounts of these terminally-ill individuals uncovered a range of themes, meanings and values embedded within their narratives. The themes emphasized most frequently revolved around connections with family and friends, professional roles, personal experiences, major life events, moral values and lessons learned, and the continuity of familiar social environments. Although the interviews adhered closely to the DT question protocol, many accounts also encompassed difficult, at times traumatic, life events, such as the loss of a child or a family member, a devastating divorce, job difficulties, or periods of depression.

Specifically, text analysis identified eight code categories representing idem and ipse identity. According to Ricoeur’s framework, idem identity includes “origin” and “family” while ipse identity encompasses “movement”, “societal”, “work”, “recreation”, “disruption”, and “experience of the now”. Together, idem and ipse identity form the basis of narrative identity, including “feelings”, “sense of self”, and “future”. Through narrative work, these dimensions coalesce, allowing individuals integrate past, present, and future into a coherent narrative that define personal identity within the context of illness and suffering. These categories are non-hierarchical, meaning that no single category is more important than any other. The identified code categories and sub-categories are summarized in Table 2 and 3. Each category is described and exemplified with a participant quotation. The full list of quotes can be found in Appendix 1.

Existential suffering and identity at the end of life

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 at the end of life while reaffirming selfhood and identity and supporting meaningful adaptation: (1) cultivating 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 (Fig. 1). In the following, we present selected patient narratives1 to illustrate how storytelling can alleviate existential suffering at the end of life, reaffirm selfhood and identity and support meaningful adaptation to terminal illness.

Fig. 1.

Model of Narrative Identity at the End of Life. The model builds on Ricoeur’s concept of selfhood and identity, which conceptualizes identity as a dynamic interplay between idem (sameness) — the stable, enduring aspects of a person (i.e., origin, family) — and ipse (selfhood) — the continuing, reflective sense of self shaped by lived experiences, emotions, cognitions, and relationships (i.e., movement, societal, work, recreation, disruption, and experience of the now). Together, idem and ipse identity form what Ricoeur calls narrative identity, including feelings, sense of self, and future. Through storytelling, these dimensions converge, enabling individuals integrate past, present, and future into a coherent narrative that defines personal identity within the context of illness and suffering. The model illustrates how the confrontation with terminal illness or mortality (illustrated as a flash) profoundly disrupts meaning, selfhood, and identity, often culminating in existential suffering. It posits that while suffering initially destabilizes our sense of continuity (ipse identity), it also offers a profound opportunity to discover meaning in life, and ultimately, catalyze greater self-awareness, personal growth, and transformation toward authenticity. Narrative work facilitates this process by allowing for deeper exploration of one’s existence, relationships, and evolving sense of meaning and purpose. The model identifies three core mechanisms by which narrative work may mitigate existential suffering and reaffirming selfhood and identity: 1) Cultivating healing connections – to oneself, to others, and to the phenomenological world – and embracing hope help alleviate suffering and serve as essential foundations for meaningful adaptation to terminal illness. Emotional bonds and a sense of hope act as anchors, creating the safety and support necessary for deeper reflective and narrative work to occur. 2) The search for coherence and meaning-making are narrative processes that restore psychological stability and a sense of continuity. By integrating the experience of terminal illness into a broader life narrative, individuals are able to make sense of their suffering and reaffirm their identity in the face of mortality. 3) Inner growth and transformation represents a deeper existential shift – a reorientation of values, priorities, and self-understanding. This process enables individuals to approach death with greater authenticity, peace, autonomy, and a sense of control. While it often emerges as a result of engaging in narrative (depth) work, it reflects a qualitative change in one’s sense of self that extends beyond meaning-making alone

Model of Narrative Identity at the End of Life

We begin life with an implicit vision of what it might be, an implicit storyline we expect to follow. However, when a person is suddenly confronted with a life-threatening illness or the end of life, they find themselves in the midst of their life story, with the plot abruptly changing, shattering personal and familial life plans. This biographical disruption, illustrated as a flash in Fig. 1, marks the unexpected, irrecoverable or irreparable change of circumstances (lat. peripeteia) that brings not only pain, suffering, and despair but also profoundly challenges the coherence of ones’ identity. Mevin’s reflection exemplifies this personal disruption, where the prospect of loss and the unpredictability of his condition evoke a profound sense of vulnerability and existential distress.

“This time, I have more issues to deal with my illness than before. I now have a partner, whom I deeply love and with whom I wish to plan a future, perhaps even start a family. On the professional side too, I have graduated, I have a good job, and I am ready to take on something bigger (…). I feel more vulnerable because, right now, I have so much more to lose (…).” – Mevin ¹

Healing connections

The confrontation with death and dying is an extremely distressing and disorienting experience, as it threatens one’s sense of identity, meaning, purpose, and control over life. Terminally ill individuals and their families face numerous challenges due to the illness’s sudden onset, uncontrollable nature, and unpredictable progression [35]. The analysis revealed that individuals facing such circumstances often experience existential suffering, characterized by feelings of discomfort, intractable pain, exhaustion, a sense of disconnection, isolation, crisis of meaning, difficulty attaining inner peace, a diminished sense of self-worth, and a desperate need for control. This inner turmoil is poignantly reflected in Aurélie’s account, as she struggles to reconcile her own suffering, her need for autonomy and control, and her responsibilities as a mother.

“My family understands my suffering, but they don’t understand why I want to die (pause). They’re really scared of losing me. They’re not ready to let go (tears in her eyes). It’s really hard, really sad for everyone. I want to die – also for my family. Because my family needs normality. And right now, there’s no normality, it’s like temporary insanity (…). My daughter cried a lot and said, ‘Mom, you’re not doing well, and you’re not going to get better… but we still need you’. My daughter is strong, but my son is in his teenage years. It hurts me too, thinking about leaving them (struggling with inner conflicts) – I’m just not ready to die yet. I’m not ready, and I want to be there for my children as long as I can (…).”– Aurélie¹

In Aurélie’s case, the narrative illustrates how deep emotional connections with her children became a vital source of hope, enabling her to endure suffering and confront the unsettling reality of her own mortality. Although she struggled with the anticipated loss and her family’s difficulty in letting go, her love for her children helped her preserve a sense of hope and acceptance in the face of the inevitable. By confronting her situation with bravery, Aurélie affirmed meaning in her existence through the deep connections with her children and the hope of being there for them as long as possible, sustaining a sense of purpose and belonging until the very end. Expressing these inner conflicts in a space of compassionate presence allowed her to process the emotional weight of her suffering and feel seen, heard, and validated. Such recognition can foster reconnection – with oneself, with loved ones, and sources of hope – supporting the integration of difficult feelings, alleviating existential suffering, and enabling meaningful adaptation to the terminal situation [36].

In contrast, Silas’ account illustrates how healing connections can arise not only through deep emotional attachments but also through encounters with the phenomenological world – regardless of how it is perceived – and how such experiences can mitigate existential suffering while offering a sense of being held, supported, and meaningfully connected.

“How do you deal with it when you realize the disease is getting worse, and life is slowly coming to an end? It’s the uncertainty about how the disease and death are going to unfold that really scares me (…). What if I can’t do this or that anymore? What if I become a burden to everyone? I know, in the end, everyone has to go – sooner or later. But that’s something I really don’t want. It would be less frightening if we could just leave whenever we wanted. I’m not really religious, but something has given me the strength to face it. Things that have happened in my life, including my illness, have made me question religion. But I still believe that when someone passes away, something still remains, and you can feel that connection. This belief has given me something to hold onto, helping me get through all of this…” – Silas¹

For many individuals, religious or non-religious, existential concerns about healing, hopes for miracles, and fears surrounding loss of control and the prospect of death and dying often trigger deep spiritual, transcendent, or metaphysical reflections [37]. This process is further intensified by the erosion of traditional and sacred ceremonies or rituals associated with illness, suffering, death, and dying, a consequence of globalization, secularization, and individualization [38], which has increasingly left individuals responsible for navigating their own beliefs and responses to these existential issues [39]. In this patient’s account, Silas found solace and a sense of being “held” through a profound connection with the phenomenological world, helping him to cope with suffering and navigate uncertainty. He clung tightly to what remained - even if it was only faith - holding on with every last shred of strenght he had left.

Search for coherence and meaning-making

The confrontation with terminal illness, death, and dying disrupts personal identity (ipse identity) along with one’s sense of continuity and control [11]. Ylva’s account poignantly highlights the significant role of the search for meaning in re-establishing coherence in one’s life. Coherence, in this context, refers to the enduring confidence that the surrounding social environment is structured and reliable, offering the necessary resources to cope with life’s disruptions. This confidence implies that challenges are manageable when areas of life are perceived as meaningful, worthy of engagement, personal involvement, and commitment [40].

“I had a breakdown, burnout. This was the turning point. That’s when I realized, this isn’t working. If you put all your eggs in one basket, it’s not going to work because the basket falls over, and everything breaks. You end up with nothing. That’s when I started with theater, and then later, with gardening. That’s the best. Finding something that fulfills you (searches for words), I think that’s the way to go. I wish I had figured this out years ago (…). I think a lot of things would have been more stable, calmer, and probably more relaxed if I’d understood this earlier – if I’d approached things differently. But, well, better late than never. I just want to live life as normally as I can, the best I can. And I’m proud of the fact that I’ve accepted my illness.” – Ylva¹

Ylva’s journey highlights the profound shift that can occur when confronted with terminal illness, leading to a reorientation of values and a search for coherence and meaning beyond previous beliefs and habits. This shift fosters engagement in new, fulfilling activities that support acceptance, emotional healing, and growth. The meaning-making process, catalyzed by her life-threatening diagnosis, restored coherence to her existence [41]. Through this introspection, Ylva was able to redefine her sense of self, whereby her identity is not merely shaped by past experiences, but also by how she engages with and interprets suffering [5, 11].

Personal transformation

As individuals integrate life disruptions into their identity through the pursuit of coherence and meaning while narrating their story, they may undergo profound personal transformation [42]. Paradoxically, the confrontation with death and dying can be so painful, shattering, and disorienting that it initiates a counter-movement – a radical shift toward growth and forward progression [8]. This process brings core values to the forefront and facilitates the emergence of one’s true self [43]. Ava’s account illustrates this transformative process, showing how the confrontation with suffering, illness, and mortality has led her to a renewed appreciation for life and enabled a deeper, more meaningful engagement with both life itself and the people who matter most to her.

“I lost my mom when I was nine and spent a lot of time alone. The losses just kept coming. When I was 38, I lost my 16-year-old son in an accident. I’d stayed in an unhappy marriage for 16 years, just for my son’s sake and after he passed, I went through a terrible divorce. Then, only five months later, my sister died, too. Those were the hardest and most difficult years of my life. I was completely lost, struggling with depression for a long time — until I met my current partner. From then on, my life got better, but our time was short (…). This illness has opened my eyes to life and made me appreciate things more – things I no longer have or that have changed. It’s made me realize that it could be over in an instant. So now, I live more day by day and enjoy each day a little more than before. It sounds simple, but there’s something deeply true about it: it takes difficult situations to truly appreciate the good and beautiful aspects of life. And this is what has happened with our family – the illness has brought us closer, taught us help each other, care for one another, and enjoy life (…). This illness has really put me on the right path, especially in the way I think (…). I just hope we can share many more happy moments together…” – Ava¹

Ava’s process of transformation began with hope, which became a vital resource for strengthening acceptance, resilience, and meaning in the face of illness, suffering, and the reality of death [44]. In her narrative, hope – expressed as the desire for lighthearted moments and a better life – emerged as a powerful counterforce to despair. The awareness of mortality, alongside the hope for many good days or even a miracle, is not inherently contradictory. Even as the hope for a cure faded, hope endured, by shifting its focus towards meaningful experiences and deeper human connections. This process reflects more than meaning-making – it illustrates a deeper existential shift: a reorientation of values, priorities and self-understanding that enabled Ava to live deliberately and relate to death with greater authenticity and peace. Hope, inherently linked to wishful thinking, opens new possibilities for existence that may extend beyond death. For Ava, this allowed her to preserve a sense of control, agency, and autonomy, thereby alleviating existential suffering and fostering the development of a more authentic sense of self [45].

Taken together, these illness narratives show that while life following the confrontation with illness, suffering, death, and dying may never be the same, and the individual’s story is forever changed, healing and meaning can still emerge. Illness narratives from terminally ill individuals, often carry a moral imperative for authenticity, offering profound insights into moral values and lessons learned from confronting mortality [41]. In Ava’s case, her experience not only affirmed the endurance of her core identity amid adversity but also illustrated how her intrinsic values expanded and evolved, highlighting the potential for profound personal growth and transformation even in the face of terminal illness.

Discussion

This study employed a qualitative data analysis to explore narrative identity at the end of life drawing on existential-phenomenological theories. It aimed to examine how terminal illness and the loss of meaning and purpose can contribute significantly to existential suffering, thereby impacting an individual’s sense of self and identity. The study further investigates how existential suffering can be alleviated through narrative processes, as individuals reconstruct a coherent identity through storytelling. Consistent with findings from previous studies, the patients’ narratives suggest that existential suffering, rather than being purely detrimental, may serve as a catalyst for discovering meaning in life and supporting meaningful adaptation to terminal illness, ultimately enhancing self-awareness, fostering personal growth, and promoting transformation toward authenticity [7, 46].

Many individuals go through life without ever articulating their stories. This may occur because they struggle to see the connections between their achievements and challenges they have faced, or because hurtful or traumatic events remain unprocessed and deliberately shut out of consciousness [47]. Other individuals remain silent because they have had no one to whom they can trust telling their stories [48]. However, for individuals with a terminal illness, the pressure of the approaching end of life and the suffering can awaken the need to tell their story; and some may require some help doing so, both to make sense of their experiences and bring closure [49].

Individuals approaching the end of life often engage in a natural process of moral self-reflection and evaluation, critically assessing their roles, choices, decisions, and limitations throughout their lives, while also seeking to derive meaning from the disruption caused by their terminal illness [20]. Engaging in self-reflection at the end of life often involves confronting difficult experiences, including personal losses, missed opportunities, mistakes, wrongs done to others, lingering conflicts, paths that led to unfavorable outcomes, or the realization that unresolved matters remain even at the end of a fulfilled life [50]. This ethical analysis may intensify feelings of existential distress, triggering painful emotions like sorrow, regret, guilt, sadness, grief, or the desire for forgiveness [51] and in turn, exacerbate suffering, contributing to increased anxiety, depression, or even the desire for hastened death [22].

Only limited research has explored the experience of existential suffering at the end of life and the underlying processes that contribute to meaningful adaptation. Daneault et al. identified three key dimensions that reflect such adaptation in terminally ill individuals: a heightened appreciation of life, a shift in personal priorities, and deepened interpersonal relationships [7]. However, the underlying mechanisms driving this transformation remain poorly understood, making it difficult for clinicians to effectively address existential suffering and support the terminally ill in cultivating hope, finding meaning, and experiencing personal growth or transformation as they approach the end of life.

Building on this research gap, our Model of Narrative Identity at the End of Life identifies storytelling as a key mechanism for facilitating depth work. Through narrative work, individuals can rediscover, reconstruct, and transform a fragmentary and/or morally compromised past, particularly in the context of terminal illness, allowing for deeper reflection on one’s existence, relationships, and evolving meaning and purpose, helping them to explore new ways of responding to an otherwise unimaginable future [52]. The model proposes three core mechanisms that help alleviate existential suffering and reaffirm selfhood and identity: (1) cultivating healing connections and embracing hope; (2) the search for coherence and meaning-making; and 3) inner growth and transformation toward greater authenticity. These processes empower terminally ill individuals to retain a sense of control, agency, and autonomy, even in the face of their own mortality. Our model acknowledges the wholeness of a person and a life fully lived, including both the positive and negative experiences, as well as difficult emotions such as despair, pain, regret, the desire for forgiveness and reconciliation, and grief over lost time. In line with Ricoeur’s concept of selfhood and identity [11], we propose that existential suffering can be alleviated by sharing one’s story. The therapeutic potential of storytelling lies in its ability to cultivate meaningful connections that resonate with one’s personal identity, while also endowing adverse experiences with meaning, with empathic listening serving as a key mechanism for fostering narrative self-understanding [47]. Sharing and expressing difficult emotions within a supportive, and non-judgmental environment grounded in a sense of connectedness and security can facilitate the release of fears, emotional pain, anger, frustration, and sorrow, thus promoting emotional healing processes, such as grief, acceptance, forgiveness, reconciliation, and meaning-making [53].

Cultivating meaningful connections – whether with the inner self, significant others, the surrounding world, or a transcendent source of hope – appear to be integral in alleviating existential suffering and fostering meaning-based adaptation, thereby support emotional healing. Storytelling enables depth work, reflective processes through which healing connections can unfold, empowering individuals to retain a sense of control, agency, and autonomy, and most importantly, to sustain hope even in the face of their own mortality [54].

Hope, within this existential framework, emerges not as a denial of reality, but as a dynamic orientation toward what remains possible – even in the context of terminal illness [44]. We argue that storytelling gently fosters a milieu of deep hope through compassion, humanity, and deep respect for lived experiences and suffering. Hope can serve as a bridge to openness, gently expanding one’s capacity for meaningful connections [45]. Notably, when nurtured in one domain, such connection often fosters healing across others, thereby supporting the individual’s movement toward a sense of integrity, coherence, and wholeness [55]. Viktor Frankl’s assertion that suffering ceases to be suffering the moment it finds meaning [13], aligns with this perspective, highlighting that through hope individuals can discover transformative and creative potential even amid profound hardship [56].

Transformation typically occurs in response to major life disruptions and existential suffering, leading to a profound, often radical shift that changes the fundamental nature of a person’s values, priorities, or worldview [12]. This transformative process was evident across many of the DT interviews, where recurrent themes included the search for deeper meaning and a sense of connectedness emerging through suffering. Consistent with Kearney’s concept of depth work [53], which seeks to alleviate existential suffering, these shifts reflect a movement towards deeply personal and meaningful engagement with the self, others, and the world around. Depth work fosters authenticity by reconnecting individuals with what is most significant in their lives. In the narrative accounts presented in the DT interviews, these transformative experiences involved reconnecting with simple aspects of life that evoke joy, meaning, and purpose, like spending time with loved ones’, being in nature, visiting places of personal significance, or engage in fulfilling activities including gardening, painting, or music. Gratitude also emerged as a prominent theme in many of the generativity documents. For some, meaningful connections arose through profound emotional bonds, while others experienced them as phenomenal, cosmic, or transpersonal. Such connections – whether emotional, phenomenal, or transpersonal – reflect the human capacity for deep attachment and may serve as a vital pathway to restore a sense of wholeness and integrity following the disruption of personal identity, thereby supporting emotional healing [57]. This observation aligns with Frankl’s assertion that, while existential suffering initially strikes at our vulnerability to destruction, it simultaneously offers a profound opportunity to discover a new equilibrium that brings meaning and fosters personal transformation [13].

Paradoxically, although painful, the awareness of death was life-affirming for many individuals participating in DT, helping them to appreciate the importance of living in the present, fostering a desire to live more fully, and encouraging others to do the same. This observation aligns with Heidegger’s phenomenology of being-towards-death [12], which posits that true authentic being can only be attained through the direct confrontation with one’s own mortality. Such awareness enables individuals to engage in a more authentic mode of being and allowing them to find purpose, meaning, fulfillment, and freedom in their remaining time.

However, while Heidegger argues that the awareness of death provides the limit or boundary necessary to give life meaning and purpose, the opposite was reflected in the DT interviews. Confronting illness, suffering, and mortality actually liberated and enabled individuals to develop their authentic being, rather than constricting them [58]. Letting go and embracing the unknown emerged as a common feature of the healing process, reflecting Yalom’s perspective on the significance of one’s remaining lifetime [48]. While past experiences cannot be undone, the time that remains can be actively shaped. To truly become oneself requires embracing autonomy and freedom – recognizing both the capacity for choice and the responsibility it entails – while engaging authentically in the creation of personal meaning [48].

While a “true happy ending” may not be attainable for terminally-ill individuals, the illness narratives show that emotional healing at the end of life still can occur. The narrative process not only help to consolidate a fragmented identity, but may also create a space in which terminally-ill individuals become most aware of their deepest human responses to the human condition, including awareness of our vulnerability, capacity for suffering, the need for emotionally supportive and caring connections, hope, meaning, and purpose in life [59]. Although the life disruption remains, the narrative process facilitates its integration into the broader arc of the individual’s life story, thereby giving it a meaningful place within the personal biography and reaffirming a sense of a life worth living [60]. By situating their illness experience within a broader, enduring context that transcend the individual self – one grounded in shared humanity, moral values, and truth about the human condition – terminally ill individuals were able to derive enhanced meaning from their suffering. This perspective consolidated identity, reduced existential suffering, and fostered emotional healing – a feeling of being loved, held, and cared for – even in the face of mortality [57].

Clinical implications

Healthcare providers have an ethical responsibility to address the existential suffering of individuals nearing the end of life and to create space for emotional healing, thereby supporting them in achieving a dignified death [53]. While DT is a well-established intervention for enhancing dignity at the end of life, some studies highlight that it can be time-consuming and that not all care settings have the resources to implement it [25, 61]. In contrast, storytelling offers a simple yet powerful approach to reclaim identity and alleviating suffering in terminally ill individuals. Consistent with this perspective, the Model of Narrative Identity at the End of Life offers clinicians a theoretically grounded framework to address existential suffering, promote hope, and support meaningful adaptation to terminal illness.

Engaging in conversations about existential concerns, vulnerability, suffering, meaning-making, and themes of generativity and transcendence with patients nearing the end of their life may support emotional healing and adaptation to terminal illness [62]. This can be facilitated by inviting terminally ill individuals to share their personal biographies with palliative care providers either through direct conversation or written responses (e.g., in form of a letter). Tools such as the Patient Dignity Question (PDQ) [63] or the DT question guideline [21] encourage terminally ill individuals to reflect on their personhood, values, beliefs, relationships, worries and concerns, responsibilities, and strengths. Additional narrative prompts, such as “What do I need to know about you as a person to give you the best care possible?” [64]; “What matters most to you?” [43]; “What sustains you during difficult times?”; or “What are your sources of hope, meaning, strength, peace, love, and connection [65]? facilitate a comprehensive narrative history-taking. These narrative approaches help terminally ill patients to feel seen, heard, and understood as unique individuals, addressing their need for mutual trust with their healthcare providers and their desire to be actively involved in medical decision making. By engaging with illness narratives, healthcare providers ensure that medical care aligns with each person’s values, biography, and sources of meaning, while also fostering a shared sense of humanity that promotes more compassionate and respectful therapeutic relationships – and ultimately, better patient outcomes [18, 66]. Given the emotionally reciprocal nature of the patient-caregiver relationships, applying this model may indirectly benefit caregivers’ emotional well-being by mitigating patients’ existential suffering [67, 68].

Depth work – finding authenticity through connection and meaning, also serves as a metaphor for resilience in healthcare providers. It underscores the importance of staying grounded in what defines life, holds overarching significance, and carries true meaning. Self-care and resilience are rooted in a sense of meaningful connectedness, enabling healthcare providers to become, and remain, a healing presence for others [69]. The Palliative Story Exchange (PSE) is an innovative intervention for palliative care clinicians that combines reflective writing, active listening, and group reflection to promote self-awareness, empathy, meaning-making, and community co-creation. By providing a safe space to share their stories, the PSE encourages clinicians to engage with their own vulnerability, fostering a deeper understanding of their experiences, and the significance of their stories. This process strengthens connections within the palliative care community, enhances the sense of meaning in their work, and ultimately bolsters their professional identity and capacity for compassionate care [70].

Strengths and limitations

Our results should be interpreted in light of several limitations. First, the small sample size and qualitative nature of our study restricts generalizability of our findings and increases the risk of overinterpretation. Second, while DT emphasizes positive life aspects, the generativity documents may not fully capture the negative life experiences that also shape and disrupt identity. Nevertheless, many DT narratives included difficult and traumatic events, reflecting the complexity of individuals’ life stories. Further limitations relate to the proposed Model of Narrative Identity at the End of Life. First, constructing a narrative identity through storytelling and self-reflection on relationships, past behaviors, losses, adverse life events, and illness can trigger unpleasant emotions, requiring professional support. Many individuals nearing the end of life may lack the physical or emotional strength to engage in this process. Palliative care professionals must respect the autonomy of dying individuals, offering guidance, while honoring their choice not to share their stories, facilitating “a good death” story [71]. Additionally, narrative identity formation requires cognitive and verbal capacity, which may be limited in conditions like aphasia, confusion, sedation, delirium, or advanced dementia. Nevertheless, narrative identity can persist in alternative forms. For those unable to communicate verbally, close family members and caregivers play a key role in reconstructing identity through shared memories and experiences. This narrative reconstruction can prevent marginalization and exclusion from care, enabling dignity and respect by focusing on the person’s identity rather than their limitations [72].

Despite these limitations, the study’s strengths lie in its rigorous methodology, including a 7-year RCT, and the use of multiple study centers, which enhanced validity and generalizability. Furthermore, research on existential suffering, identity changes, meaning-making and emotional healing at the end of life remains limited. This study deepens the understanding of how the loss of meaning and existential suffering affect selfhood and identity in the context of terminal illness, death, and dying. As demonstrated in previous studies [7, 46], existential suffering, rather than being purely detrimental, for some individuals, serve as a profound opportunity to discover meaning in life and ultimately, catalyze greater self-awareness, personal growth, and transformation toward authenticity. The model we propose offers a novel perspective by integrating insights from the humanities and philosophy into the exploration of existential suffering and identity in the context of terminal illness and mortality. Beyond end-of-life care, this model may also be applicable in supporting identity consolidation following existential disruptions, such as loss, grief, and bereavement, trauma, or periods of profound existential crisis. Further in-depth research is required to elucidate the mechanisms underlying the transition from existential suffering to meaningful adaptation and personal growth and transformation, particularly at the end of life.

Conclusion

The confrontation with death and dying, along with the loss of meaning, can significantly contribute to existential suffering and affect an individual’s sense of self and identity. At the same time, it may prompt deeper reflection into one’s life, serving as a catalyst for increased self-awareness, self-growth, and transformation towards greater authenticity. Our Model of Narrative Identity at the End of Life illustrates how storytelling facilitates depth work, through which healing connections unfold and renewed sense of hope arises, enabling meaning-based adaptation to terminal illness, supporting personal growth and transformation, thereby empowering individuals to maintain a sense of control, agency, and autonomy – even in the face of their own mortality. Healing at a deep personal level can still emerge at the end of life – through emotionally supportive and caring connections, hope, meaning, and purpose in life, and the ability to find peace in the present moment. Integrating storytelling into medical practice is a simple yet powerful, albeit overlooked intervention, that fosters more compassionate therapeutic relationships and, in turn, improves the quality of patient care.

Abbreviations

CI

Confidence interval

DT

Dignity Therapy

HADS

Hospital Anxiety and Depression Scale

FC

Family Caregivers

KEK

Ethics Committee of the Canton Zurich

MAXQDA

Max Weber Qualitative Data Analysis

PDQ

Patient Dignity Question

PSE

Palliative Story Exchange

RCT

Randomized Controlled Trial

SD

Standard deviation

SPSS

Statistical Package for the Social Sciences

Authors’ contributions

PD developed the concept for this article and performed the qualitative analysis. The initial draft was written by AS and subsequently reviewed and edited by PD, RL, AM, JJ, and DB, contributing their expertise in bioethics, medical humanities, philosophy, and narrative medicine. All authors read and approved the final version for publication.

Funding

This study was supported by the Swiss Cancer Research Foundation (KFS-3637-02-2015-R and KFS-4413-02-2018). AS received support through the Käthe Zingg-Schwichtenberg Fund of the Swiss Academy of Medical Sciences (SAMS) (KZS 14/23).

Data availability

Data is provided within the manuscript or supplementary information files. The datasets generated and/or analyzed during the current study are not publicly available due to ethics restrictions but are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

This study was approved by the Ethics Committee of the Canton Zurich (KEK), Switzerland (KEK-ZH-Nr. PB_2016-01275) and registered with ClinicalTrials.gov (Protocol Record NCT02646527). All study procedures adhered to the World Health Organization’s Declaration of Helsinki.

Consent for publication

N/a.

Competing interests

The authors declare no competing interests.