Existential Suffering: Intensive Caring and Existential Therapy Informed Communication for Serious Illness Care

Abstract

Existential concerns are common in serious illness and may include confronting questions about meaning, purpose, and mortality. The salience of these issues can vary between patients and throughout illness, and can oscillate between existential suffering, demoralization, normative processing, and even existential growth. Through analysis of a clinical composite case, this article illustrates dimensions and cues of existential suffering during serious illness. Recognizing the sources and manifestations of existential distress can help expand therapeutic imagination in serious illness care. Guided by existential principles, we draw on the tenets of Intensive Caring and Dignity in Care to offer practical language and psychotherapeutically informed communication strategies for general palliative care practice. These techniques aim to ease existential suffering, strengthen relational connection, and support patients in living meaningfully through the end of life.

Keywords

coping existential distress existential therapy intensive caring palliative care serious illness communication

Introduction

In the setting of serious illness, existential concerns related to meaning, purpose, and belonging often intensify and become salient as individuals confront the fragility and limits of life.¹ In palliative care settings, psycho-existential symptoms are common and may become distressing.² Although prevalence estimates vary depending on the constructs evaluated, existential suffering among people with serious willness is reported in approximately 13–35% of patients.^2–5 Importantly, patients may move dynamically along a continuum from existential suffering to existential growth, with experiences that fluctuate over time with illness progression, psychosocial and spiritual factors, relationships, and care encounters.⁶ Recognizing and responding to existential suffering is a core component of palliative care practice.

Written for frontline, interdisciplinary palliative care clinicians, this article uses a case-based approach to illustrate concrete, actionable serious illness communication (SIC) techniques for responding to psychological distress rooted in existential suffering. Existential suffering is conceptualized through the lens of existential therapy’s core struggles, with parallels drawn between existential suffering, personhood, and dignity in serious illness to deepen recognition of the sources and manifestations of distress and to expand therapeutic imagination in SIC.⁷ These existential principles are adapted and operationalized for routine serious illness care rather than as specialist psychotherapeutic interventions. We highlight frameworks intentionally designed for everyday clinical practice—such as tenets of Intensive Caring⁸ to enact Dignity in Care⁹— that align with underlying psychological needs. Together, these approaches aim to ease existential suffering, strengthen relational connection, and support patients with existential distress in living meaningfully through the end of life. This article is the fourth in a nine-paper series on psychotherapeutically informed SIC.

Case Description

Mr. B is a 72-year-old retired mechanic, father, and grandfather with a history of alcohol use disorder, now living with decompensated cirrhosis. His illness course has been marked by refractory ascites, requiring repeat paracenteses, recurrent hospitalizations for upper gastrointestinal bleeding, and progressive renal dysfunction. Although his family remains hopeful that he may be considered for a liver transplant, Mr. B has struggled to engage in conversations about his goals and preferences, becoming increasingly withdrawn. In a period of openness, Mr. B becomes tearful, saying, “I wanted to see my grandkids grow up.” Later that day, a nurse reports that while assisting him with a bedpan, Mr. B broke down, saying: “Going to the bathroom in a pan—it’s disgusting. I can’t even go to the restroom on my own anymore. I used to take care of everyone, and now I can’t even take care of myself. This just…isn’t a life.”

Discussion

Mr. B’s withdrawal, inability to engage meaningfully in care, and tearful expressions of multidimensional loss suggest that he is struggling to cope with existential suffering caused by his serious illness experience. To accompany Mr. B in his existential suffering, clinicians can first consider the core struggles underlying his distress using foundational principles of the existential therapy framework. We can then respond with SIC techniques that align with his psychological needs, such as the tenets of Intensive Caring⁸ to enact Dignity in Care.⁹

Principles of existential therapy as a framework for understanding existential distress

Existential therapy emphasizes a set of core tensions arising from the fundamental condition of human existence. Among the most widely articulated frameworks, existential psychiatrist and psychotherapist Irvin Yalom described four central existential struggles: aliveness versus finitude; freedom versus responsibility; isolation versus connection; and meaning versus meaninglessness.¹⁰ Existential suffering arises when individuals confront these fundamental conditions of existence without sufficient internal or external resources to cope; it is distinguished from normative existential concern by its intensity and all-encompassing nature.¹¹

Existential suffering in the context of serious illness can manifest in a wide array of potential distressing thoughts or emotions in a given patient— feelings of hopelessness; loss of meaning and dignity; regret, grief, and loneliness; worries of burdening others; fears of dying; questions about whether life remains worth living.¹² For some, it may manifest as demoralization, marked by profound hopelessness and helplessness arising from a loss of purpose or meaning in life.^4,13

In serious illness, suffering has been conceptualized as a fracturing of personhood, occurring when illness disrupts identity.¹⁴ These experiences are relationally embedded and shaped by connections with family, caregivers, and clinicians.^15,16 Disease-related changes in cognition, communication, or function may evoke diminished or invisible personhood, sometimes described as a form of “social death,” as patients become increasingly marginalized within their social and clinical worlds.¹⁵

Examining Mr. B’s experience through Yalom’s core existential challenges illuminates multiple sources of suffering (see Table 1).¹⁰ Overt conversational cues reflect deep existential concerns, such as direct confrontations with death (“I wanted to see my grandkids grow up”), shifts in daily routines that threaten freedom and identity (“I can’t even go to the restroom on my own anymore”), changing relationships that raise concerns about belonging and isolation (“I used to take care of everyone”), and questions about what makes a meaningful life (“This just…isn’t a life”). Conversational cues may also be more subtly expressed within conversation; speech patterns and markers of disfluency may suggest difficulty conveying the gravity of one’s emotional response to the current situation.¹⁷

Table 1.

Mapping Core Existential Struggles to Psychologically Aligned SIC Strategies

Key Existential Struggles	How it Manifests for Mr. B	Aligned Intensive Caring Communication Strategies/Tools
Aliveness vs. finitude	Mr. B’s expressed desire to see his grandkids grow up may suggest his suffering is in part due to the looming inevitability and unpredictability of death, providing a glimpse that he may be experiencing the sense of a life story being cut short.	Therapeutic humility: • Tolerating ambiguity and relinquishing the need to fix • Normalizing shared human experience Dignity-affirming presence: • Exploring sources of meaning • Recognizing routines and roles that remain possible within illness limitations • Commitment to ongoing presence and connectedness
Freedom vs. responsibility	Mr. B’s distress about using a bedpan and requiring help may suggest his suffering is in part due to a loss of control, loss of independence, and loss of dignity in the face of a threat to the identity he once embodied.	Acknowledging Personhood: • Enhancing dignity and personhood • Identity-affirming language that acknowledges the fluidity of personhood • Attending to personhood in daily care • Enhancing personhood within relationships
Isolation vs. connection	Mr. B describes a shift in social roles (e.g. the caretaker to the one needing care). This may trigger feelings isolation or of being a burden. His concern about connection to future generations may trigger worry about his legacy; this may be compounded by his present sense of ‘social death’ whereby he cannot participate in family events or discussions.	Non-Abandonment: • Conveying continued care and support • Affirming patients as experts in their own story • Promoting connection in daily care
Meaning vs. meaninglessness	Loss of meaning manifests in big and small ways in Mr. B’s expressed concerns—the shift in his traditionally upheld social roles and sense of his own identity, the daily care patterns that cause a reckoning with his changing body and abilities, and the explicit questioning of whether his present reality is one in which he can find meaning.	Knowing What’s Possible: • Exploring hope • Identifying and naming hopelessness and ambivalence • Promoting hope in daily care

Viewed through the lens of fractured personhood, Mr. B’s reflections on who he once was suggest a profound disruption of personhood. His statement, “This just…isn’t a life,” signals he may be questioning whether his current state of existence remains meaningful or worthwhile.

While formal psychotherapy would be outside the scope of general palliative care practice, existential principles can inform therapeutic communication techniques in the face of existential distress, as illustrated below. Patients with severe or complex existential distress may additionally benefit from increased interdisciplinary support and clinicians with specialized expertise in psychological, psychiatric, or spiritual care.

SIC techniques aligned with existential principles

The concept of suffering, and strategies to address the various dimensions of suffering, are central concerns across health care disciplines, both as clinical challenges and as a moral imperative.¹⁸ The Dignity in Care model, developed and disseminated by Harvey Max Chochinov, highlights how clinicians’ attitudes, behaviors, and systems of care have the potential to uphold (or erode) patient dignity. Informed by existential principles, Chochinov developed the tenets of Intensive Caring to describe a relational posture that operationalizes dignity in everyday clinical work. Below, we explore the application of five core elements as actionable SIC techniques: nonabandonment, acknowledging personhood, knowing what’s possible, dignity-affirming presence, and therapeutic humility.⁸ Table 1 maps Mr. B’s existential struggles onto dignity-conserving strategies¹⁹ embedded within the tenets of Intensive Caring. 1)

Nonabandonment: Nonabandonment reflects a commitment to ongoing presence and care, even when suffering cannot be fixed.⁸ Clinicians can convey nonabandonment through an empathic, nonjudgmental, and abiding presence that helps patients feel deeply heard and known.

For Mr. B, whose statements suggest existential loneliness and isolation,²⁰ clinicians can convey their continued care and support:

I know you’re used to taking care of others, and it sounds like right now, it’s a big change for you to accept help. I don’t know what will make this easier, however, I want to keep talking about it together. Our care team will keep showing up and working with you to make this feel more bearable for you.

Mr. B’s team may affirm his expertise and agency in his own story with statements such as:

What has helped you through adversity and hard times in the past? What can we do to support you accessing those resources now?

Mr. B’s team may also promote connection in daily care by inviting family participation as desired and pausing to create moments of deliberate slowness to foster connection within busy clinical settings. 2)

Acknowledging Personhood: Acknowledging personhood involves recognizing the patient as a whole human being and taking a genuine interest in who they are beyond their illness.⁸ Affirming personhood supports patients to live well with serious illness, manage distressing symptoms, and experience a good death.^15,21,22 The Patient Dignity Question (PDQ)—“What do I need to know about you as a person to give you the best care possible?”²³—can help patients articulate what defines them while also experiencing themselves as seen and valued persons, rather than as embodiments of disease.^7,24 Acknowledging personhood can enhance dignity when it conveys appreciation for who patients are, what they value, and all they have tried to be.⁷

For Mr. B, whose illness appears to threaten his identity, clinicians may ask the PDQ:²³

What do I need to know about you as a person to give you the best care possible?

Importantly, identity can evolve as patients adapt to illness, reorder priorities, and prepare for death. Mr. B’s team can affirm enduring values while also supporting the myriad ways that patients adjust to progressive illness¹⁵ with language that acknowledges the fluidity of personhood:

Even with illness, I still hear the problem-solving mechanic in you. I can see how painful it is to not be there for your grandchildren, which shows how deeply you care about your family.

Mr. B’s team can recognize aspects of care that he finds most undignified and ask questions that will guide strategies for supporting preferences, when possible, and preserving dignity:

What about your body or privacy feels most important to you right now? How would you like to be seen or known, despite the things that are happening to your body?

Mr. B’s team may leverage the relational dimension of his life to enhance personhood:

Are there special or important roles in your life that you would like to talk about? Are there lessons from your life you hope to pass on? Are there words of guidance or advice you would like to share with people you love or care about?

Clinicians also can affirm personhood within families by guiding care partners toward conversations that foster connection, comfort, forgiveness, and goodbyes, which may support both patients’ dignity and families’ grief and bereavement.²⁵ Dignity Talk²⁶ is a question framework designed to facilitate conversations between patients and their family members without the support of a therapist. These types of dignity-conserving conversations can include reminiscence, affirmation of the importance of a person’s story, and fostering narrative integrity.²⁷ 3)

Knowing What’s Possible: When clinicians lose sight of what remains possible, hopelessness can become contagious among patients, families, and clinicians. Attending to what is possible by holding and containing hope in the face of serious illness preserves the sense that this time may still hold meaning or purpose, inviting expansive thinking about what can be hoped for now. This may include hope for psychological, spiritual, or physical comfort in daily life and in dying, as well as hope grounded in ongoing relationships that allow for meaningful connection. While Mr. B’s family remains hopeful for a liver transplant, his limited engagement in conversations about his illness and care makes his own hope less visible. Mindful not to minimize the losses he has experienced, his clinicians may explore what he is hoping for, offering an opportunity for discovery:

I hear that your family is hopeful about transplant, and I share that hope. At the same time, I wonder if we can think together about what else you might be hoping for right now. Given everything you’re facing, what does hope look like for you today, even if it’s different from what you hoped for before?

Clinicians should be mindful that hope and hopelessness often coexist.¹ Mr. B’s team may explicitly name hopelessness or the dilemma involved in seeking hope during times of despair, thereby opening additional space for exploration:²⁸

People who tell me they feel hopeless often say they feel that nothing matters. I’m wondering if we can talk about what matters to you now, or what has mattered to you in the past?

Clinicians can promote hope in daily care by fostering meaningful connections, identifying near-term events patients may look forward to, gathering meaningful symbols such as photographs, music, letters, or poems, imagining alternate hopes centered on comfort or connection, and inviting reflection on wishes for loved ones in the future.²⁹ 4)

Dignity-Affirming Presence: Providing dignity-affirming care involves cultivating therapeutic presence through compassion, respect, authenticity, trustworthiness, attentiveness, and emotional resilience, while remaining mindful of professional boundaries and the patient’s intrinsic worth.⁸ Reframing vulnerability, dependency, and fragility as shared aspects of our collective humanity can foster a genuine, responsive presence, allowing patients to be met as fellow humans. For palliative care clinicians, feelings of helplessness may be eased by recognizing the potency of therapeutic presence and by reframing care away from the imperative to do something toward acknowledging the inherent value of being.

Dame Cicely Saunders observed, “If we can come not only in our professional capacity but in our common vulnerable humanity, there may be no need of words on our part, only for concerned listening”.³⁰

For Mr. B, whose statements reflect a sense of meaninglessness, clinicians might respond with communication strategies that affirm dignity through open-ended, exploratory questions that invite reflection on meaning, drawing from dignity therapy and meaning-centered psychotherapy approaches.^9,31 His team may ask:

What gives you a sense of purpose right now? When have you felt most alive or connected? What do you hope people remember most about who you are?

Mr. B’s team may support him by upholding a sense of meaning in his days by recognizing activities of daily living as “Accomplishments of Disabled Life,”³² supporting valued “normal” routines and roles in whatever ways are possible within his current limitations.²⁹ Relational care practices that uphold dignity are rooted in continued presence and an unwavering commitment to connectedness. 5)

Therapeutic Humility: Clinicians can step outside of the familiar medical paradigm of examining, diagnosing, and fixing. This stance relinquishes the impulse to resolve and “fix” suffering and, instead, cultivates tolerance for ambiguity through open, flexible exploration of the patient’s experience.⁸ Therapeutic humility often requires courage, as clinicians enter a relational space without the certainties afforded by curative or transactional modalities.

Conversations may therefore move between seemingly opposing ideas, such as supporting living well while acknowledging dying or holding space for meaning and security, uncertainty and grief.^16,33 Allowing these dialectics to coexist, rather than attempting to resolve them prematurely, can create opportunities for existential growth.¹⁶ Insights from other therapeutic contexts suggest that non-directive, supportive approaches that trust individuals’ intrinsic capacities may help patients transform their relationship to suffering, reconciling previously conceived paradoxes, even amid intense emotional states.^34,35

For Mr. B, clinicians can model tolerating ambiguity and relinquishing the need to fix with statements such as:

It seems like you are grappling with how to live fully, even now.

Mr. B’s team can normalize shared human experience through statements such as:

Despite being very ill, I wonder what part of you feels strongest right now? Many people in your situation experience both grief and gratitude, or a desire for both solitude and connection. What do you think about that?

Conclusion

Suffering has been described as being experienced by persons, not merely by bodies, arising from threats to the intactness of the person as a complex psychological and social being.³⁵ The relief of suffering has long been recognized as the central aim of palliative care. The core existential struggles described in existential therapy can provide clinicians a lens through which to recognize and consider the nuanced manifestations of existential suffering.¹⁰ When existential distress emerges as a central driver of suffering, SIC techniques grounded in existential principles and adapted for routine clinical care, such as Intensive Caring,⁸ may be particularly helpful in upholding patient dignity and addressing underlying psychological needs. Integrating these approaches—along with systems-level practice changes that prioritize time, training, and interdisciplinary support for relational and meaning-centered serious illness care—can help clinicians respond more skillfully to existential suffering while promoting dignity, connection, and meaning through the end of life.

Author Disclosure Statement

All cases presented in this series are hypothetical composites developed for illustrative and educational purposes. They do not represent real patients, and, therefore, consent to publish was not required. No competing financial interests exist.

Funding Information

No funding was received for this article.

References

1. Tarbi

, Meghani

. A concept analysis of the existential experience of adults with advanced cancer. Nurs Outlook 2019;67(5):540–557.

2. Kissane

, Appleton

, Lennon

, et al. Psycho-Existential Symptom Assessment Scale (PeSAS) Screening in Palliative Care. J Pain Symptom Manage 2022;64(5):429–437.

Robinson

, Kissane

, Brooker

, Burney

A systematic review of the demoralization syndrome in individuals with progressive disease and cancer: a decade of research. J Pain Symptom Manage 2015;49(3):595–610; doi: 10.1016/j.jpainsymman.2014.07.008

4. Gan

, Gong

, Kissane

. Mental state of demoralisation across diverse clinical settings: A systematic review, meta-analysis and proposal for its use as a ‘specifier’ in mental illness. Aust N Z J Psychiatry 2022;56(9):1104–1129.

5. Kissane

, Bobevski

, Appleton

, et al. Real world experience of change in psycho-existential symptoms in palliative care. J Pain Symptom Manage 2023;66(3):212–220.e2.

6. Chochinov

, McClement

, Hack

, et al. Eliciting personhood within clinical practice: Effects on patients, families, and health care providers. J Pain Symptom Manage 2015;49(6):974–980.e2.

7. Chochinov

. Intensive caring: Reminding patients they matter. JCO 2023;41(16):2884–2887.

8. Chochinov

, Hack

, Hassard

, et al. Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. JCO 2005;23(24):5520–5525.

9. Yalom

. Existential Psychotherapy. Basic Books: New York; 1980.

10.

10. Rodgers

, Cowles

. A conceptual foundation for human suffering in nursing care and research. J Adv Nurs 1997;25(5):1048–1053.

11.

11. Boston

, Bruce

, Schreiber

. Existential suffering in the palliative care setting: An integrated literature review. J Pain Symptom Manage. 2010/12/15 ed 2011;41(3):604–618.

12.

12. Kissane

, Clarke

, Street

. Demoralization syndrome–a relevant psychiatric diagnosis for palliative care. J Palliat Care 2001;17(1):12–21.

13.

13. Chochinov

. Fractured personhood, suicide, and lessons from those nearing death. J Palliat Med 2023;26(8):1037–1039.

14.

14. Sofronas

, Wright

, Carnevale

. Personhood: An evolutionary concept analysis for nursing ethics, theory, practice, and research. Nurs Forum 2018;53(4):406–415.

15.

15. Tarbi

, Moore

, Wallace

, et al. Top ten tips palliative care clinicians should know about attending to the existential experience. Journal of Palliative Medicine [Internet] 2024. Available from: https://www.liebertpub.com/doi/10.1089/jpm.2024.0070

16.

16. Manetta

, Bhatia

. “It was just so hard”: ineffable just as a mixed expressive. Glossa: a Journal of General Linguistics [Internet] 2024;9(1). Available from: https://www.glossa-journal.org/article/id/10362/

17.

17. Carnevale

. A conceptual and moral analysis of suffering. Nurs Ethics 2009;16(2):173–183.

18.

18. Hadler

, Weeks

, Rosa

, et al. Top ten tips palliative care clinicians should know about dignity-conserving practice. J Palliat Med 2024;27(4):537–544.

19.

19. Bolmsjo

, Tengland

, Ramgard

. Existential loneliness: An attempt at an analysis of the concept and the phenomenon. Nurs Ethics 2018:969733017748480.

20.

20. Kabel

, Roberts

. Professionals’ perceptions of maintaining personhood in hospice care. Int J Palliat Nurs 2003;9(7):283–289.

21.

21. Kabel

. The snog and grog club: Social personhood in hospice care. Qual Health Res 2013;23(2):147–155.

22.

22. Chochinov

. Revisiting the patient dignity question: Paying attention to personhood. J Palliat Med 2025;28(11):1433–1434.

23.

23. Raudonis

. The meaning and impact of empathic relationships in hospice nursing. Cancer Nurs 1993;16(4):304.

24.

24. Kristjanson

, Aoun

. Palliative care for families: Remembering the hidden patients. Can J Psychiatry 2004;49(6):359–365.

25.

25. Guo

, Chochinov

, McClement

, et al. Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study. Palliat Med 2018;32(1):195–205.

26.

26. Devuyst

, Leiter

, Milliken

, et al. Narrative identity at the end of life: A qualitative analysis of dignity therapy interviews from an existential perspective. BMC Palliat Care 2025;24(1):269.

27.

27. Jackson

, Jacobsen

, Greer

, et al. The cultivation of prognostic awareness through the provision of early palliative care in the ambulatory setting: A communication guide. J Palliat Med 2013;16(8):894–900.

28.

28. Haufe

, Leget

, Potma

, et al. How can existential or spiritual strengths be fostered in palliative care? An interpretative synthesis of recent literature. BMJ Supportive & Palliative Care 2020. Available from: https://spcare.bmj.com/content/early/2020/09/13/bmjspcare-2020-002379

29.

29. Doyle

, Hanks

GWC

, MacDonald

. Oxford Textbook of Palliative Medicine. 2nd ed. Oxford University Press: Oxford; 1998. (Oxford medical publications).

30.

30. Breitbart

, Poppito

, Rosenfeld

, et al. Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. JCO 2012;30(12):1304–1309.

31.

31. Marc

. Orientation and Intake. Glioblastology. 2025. Available from: https://glioblastology.substack.com/p/orientation-and-intake?publication_id=1680634&utm_campaign=email-post-title&r=6rdx6&utm_medium=email

32.

32. Brenner

, Rosenberg

, Cramer

, et al. Exploring the psychological aspects of palliative care: Lessons learned from an interdisciplinary seminar of experts. J Palliat Med 2021;24(9):1274–1279.

33.

33. Tarbi

, Miner

, Nigam

, et al. “To have the encounter with our own finiteness in that existential way”: Descriptions of existential experience in patients with cancer and major depression participating in psilocybin-assisted group therapy. Psychedelic Medicine 2025:28314425251370303.

34.

34. Miller

, Rosa

, Doerner Rinaldi

, et al. Applying key lessons from the hospice and palliative care movement to inform psychedelic-assisted therapy. Psychedelic Medicine 2023;1(3):124–129.

35.

35. Cassell

. The nature of suffering and the goals of medicine. N Engl J Med 1982;306(11):639–645.