Existential Suffering Part 1: Definition and Diagnosis #319

Background

Patients with serious illnesses often wrestle with existential questions such as: Why is this happening to me? What is the meaning of my suffering? Where is God? Typically, these questions do not indicate psychological pathology. However, for some patients (likely 13–18% with progressive illness), these questions can evolve into clinically significant existential suffering that can erode self-worth, correlate with suicidal ideation, and exacerbate physical symptoms such as pain or nausea.^1–3 Palliative care clinicians are often faced with the challenging task of identifying when existential concerns are contributing to suffering in a way that a healthcare team should intervene. This Fast Fact reviews the definition of existential suffering and common identification tools. Fast Fact #320 reviews suggested care approaches for a patient with existential distress.

Definition

There is no widely agreed upon definition of existential suffering nor an agreed upon term to describe it. Other terms seen in the published medical literature include “existential distress,” “demoralization syndrome,” and “total pain.” ⁴ One commonly referred to definition is an incapacitating state of despair resulting from an inner realization that life is futile and without meaning. ¹ Four existential domains have been recognized through which existential suffering can manifest^3,5:

Existential and Spiritual Suffering

Existential suffering and spiritual suffering are not synonymous although these phenomena often overlap. Spiritual suffering, defined simply as distress because of spiritual or religious concerns, can be conceptualized as a subtype of existential suffering. When considering the differences between existential and spiritual suffering, several key points warrant emphasis:

• Some patients with existential suffering may not consider themselves to be spiritual and may become upset if a clinician reflexively consults a chaplain.

Clinical Assessment Tools

Clinicians should listen for existential “cues” in all patients with serious illness, especially when symptoms seem out of proportion to their disease. Such cues can be expressions of doubt about life's meaning or one's faith or expressed feelings of isolation—for example, no one understands what I'm going through. Although there are multiple validated assessment tools available to aid healthcare providers in the diagnosis of existential suffering, many of these tools focus on one specific existential domain and others may be too cumbersome to implement into clinical practice. Instead one particularly useful tool involves simply asking the patient: Are you at peace? ⁷ A no answer should prompt further exploration of signs of distress, physical or otherwise, with follow-up questions such as What's keeping you from being at peace? or What worries you the most about your illness?

Risk Factors

No associations were found with existential suffering and time since diagnosis, stage of disease, or type of treatment. ¹ One systematic review identified the following risk factors ⁸ :

• Poor social support: single patients (including divorced, separated, and widowed) or unemployed.

Diagnostic Challenges

A lack of a universally accepted definition, clinician knowledge deficit, and concomitant psychological, spiritual, or social concerns make existential suffering difficult to diagnose. Furthermore, patients may have difficulty articulating their distress or may not be willing to disclose it if they feel their clinicians are too busy or guarded from discussing existential concerns. ⁴ Not all patients with existential suffering develop clinical anxiety or depression. In general, clinical depression can be defined by a loss of interest or pleasure in the present moment, whereas existential suffering is typically defined by a loss of hope, meaning, and anticipatory pleasure.^9,10 Despite these challenges, it is important for clinicians who care for seriously ill patients to elicit existential concerns, as doing so can open opportunities for empathetic connection and clarify treatment options. Collaborating with social workers, chaplains, or psychologists is vital to better understand a patient's suffering.