18 Existential Suffering and Distress

Elisha Waldman and Mark Bartel

Suffering—its identification, prevention, and alleviation—lies at the heart of the work of palliative care. Suffering may take any number of forms, ranging from the physical to the psychological to the social and the spiritual. This chapter deals with the particular yet difficult to define domain of existential suffering. The first part of the chapter explores how we define and identify existential suffering. The second part explores where, in the context of the practice of pediatric palliative care (PPC), clinicians might encounter existential suffering. The third part explores ways in which interdisciplinary teams might address existential suffering.

The experience of existential suffering in humans extends back to the earliest emergence of a self-aware Homo sapiens. Among the earliest recorded evidence of such suffering is a clay tablet from the Near East that dates to about 3,000 years ago. It is inscribed with what is known as the Babylonian theodicy, a poem describing two friends debating the meaning of suffering: “You are kind, my friend; behold my grief. / Help me; look on my distress; know it. / I, though humble, wise, and a suppliant, / Have not seen help or succour for one moment.”² The Biblical Book of Job, likely more familiar to the modern reader, is believed to have its origins in that poem.³ In Job we read of the protagonist, suffering one tragedy after another, saying, “When I looked for good, evil came, and when I waited for light, darkness came. My inward parts are in turmoil and are never still; days of affliction come to meet me. I go about in sunless gloom; I stand up in the assembly and cry for help” (30:26–28).⁴ This cry resonates across the ages and is surely recognizable to the modern reader as an expression of existential distress; this could very easily have been written just today.

Numerous examples from art and literature over the past two millennia attest to human interest in and recognition of the importance of suffering, ranging from the passions of Bach and Verdi, to the painting and sculpture of Michelangelo and Picasso, to the writings of Dostoevsky and Dickens. Interest in the topic of existential suffering as reflected specifically in the medical literature has grown in recent years. This may reflect relatively recent and continually improving developments in interventions which may not “cure” a condition but can prolong life. While such interventions are introduced with the hope of simultaneously improving quality of life, all too often this is not the case. Instead, they may result in tradeoffs involving more time lived but with diminished quality, during which time existential issues might arise. Regardless, it is clear that over the past three decades there has been increased acceptance of the idea of whole-person care and the importance of addressing nonphysical symptoms along with physical symptoms and root causes of illness. This includes the idea of existential distress.

Defining Existential Suffering

Clinicians often use the term “existential suffering” or “existential distress,” yet what is meant by this term and how to address it remain poorly understood. As one review paper states: “The most prevalent finding in this review has been a lack of consistency in the way existential suffering is defined and understood.”⁵ It also often seems that the terms “existential suffering” and “existential distress” are used interchangeably. The difference, if any, between the two terms may not be meaningful, but some have ventured that “suffering” is more indicative of an ongoing and critical process, whereas “distress” may represent a broader range of states, encompassing everything from what might be considered “normal” worries and sadness through disabling anxiety and panic.⁶ That understanding should not indicate that distress about an issue is any less deserving of attention than had it been labeled “suffering.” Rather, the label may indicate a degree of depth and gravity, with distress encompassing a potentially milder range. There may also be a difference in degree of temporality implied by the two terms, with the idea of suffering indicating an experience that is more sustained. Ultimately, the difference may be academic and less critical when it comes to the bedside. For the purposes of this chapter, we will primarily use the term “existential suffering” but acknowledge that many may use that term and “existential distress” interchangeably without making a distinction.

A review of the literature suggests that there may be upward of 50 different definitions of existential suffering, which speaks to the lack of a common language around the issue.⁵ Despite the lack of consensus, attempts have been made to create classification systems as a way of defining types, or root causes, of existential suffering.⁷ It is then possible to extract a number of themes that appear to be consistent across definitions. Existential suffering often touches on or overlaps with spirituality, psychological distress, social distress, and physical symptoms. It is important to recognize that these other forms of suffering may be at once distinct from yet linked to existential suffering; for example, the experience of ongoing physical suffering may well exacerbate the experience of existential suffering. Identifying and addressing these potential contributing issues is a vital part of addressing existential suffering. The often-multifaceted nature of existential suffering also speaks to the importance of an interdisciplinary approach.

Existential suffering is often discussed in the context of spiritual distress, at times even interchangeably; certainly there is much shared language in discussing existential issues and spiritual issues. Spiritual distress is not limited just to those who identify with a faith community or specific set of religious beliefs.⁷ Taken in its broadest form, the idea of spiritual distress is so closely aligned with, and even encompassed by, the idea of existential suffering that they are practically indistinguishable. Because of this, much of the literature that addresses existential suffering is also literature that addresses spiritual distress, and vice-versa. In addition (and as will be discussed later in this chapter) addressing existential suffering demands a broad interdisciplinary approach in which chaplaincy plays a specific and significant role.

There is limited research on the identification and management of existential suffering; most of the literature focuses on adult patients and is grounded in the psychiatric literature. An increasingly robust body of literature is exploring spiritual needs and distress in different populations, and this research contributes to the discussion of existential suffering. Often it seems that by “existential suffering” clinicians mean some sort of ineffable level of soul-deep suffering that is distinct from all other forms of more corporeal suffering⁸ and is difficult to plumb and engage. In fact, the phrase “existential suffering” often seems as if it is appended to perceived suffering that is beyond our comprehension or skills to manage as clinicians, as though clinicians are acknowledging that “this is just the way it is.” What makes existential suffering seem so elusive? Eric Cassel, a physician and one of the great modern writers on suffering in medicine wrote, “Suffering occurs when an impending destruction of the person is perceived; it continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner.”⁹

Classification systems as ways of defining types, or root causes of, existential suffering, are important to explore.⁵ Although none of the proposed systems may be completely satisfactory, they can provide a framework for understanding what people mean by “existential suffering.” The typologies presented in Table 18.1 may also be instructive when thinking about how to elicit and address concerns around such suffering.

An additional proposed classification scheme, drawing on the work of Yalom, has direct relevance for the world of palliative care. It proposes four domains through which existential suffering can exist.¹⁰ The first domain is that of mortality, meaning a recognition of one’s own mortality and an accompanying anxiety around death itself. Second is the domain of freedom, wherein an individual may experience regret about past choices and unresolved conflicts. Third is a struggle around meaning, which may entail concerns around purpose and meaning of one’s life, one’s illness, and one’s legacy. Finally is the domain of isolation, in which an individual may feel lost and abandoned by family, community, or God. Although the domains as described in Table 18.2 may not apply directly to all children and their families, they are nonetheless useful across a range of settings in which clinicians encounter existential suffering.

The idea of existential suffering is often met by staff with a sense of despair, perhaps frustration, and at times even a bit of a distancing, as though identifying an area of concern that is “other” (i.e., not the clinician’s area of expertise and therefore something to be acknowledged from a distance but not directly engaged). Why is this? In part it may be that we lack the language to fully describe what this entity, existential suffering, really is. The concept gets at something fundamentally human, yet without an easily identifiable locus (as opposed to, e.g., pain caused by a tumor which can be localized and addressed). Even psychological concerns somehow seem easier to describe, as they can be identified as coming from the mind and/or brain and linked to how a person is processing emotions, feelings, and perceptions. Existential suffering, on the other hand, is harder to pin down. As Eric Cassell wrote, “Suffering is ultimately a personal matter. Patients sometimes report suffering when one does not expect it, or do not report suffering when one does expect it. Furthermore, a person can suffer enormously at the distress of another, especially a loved one.”⁹

Existential suffering is also daunting because, unlike many other forms of suffering clinicians encounter, in addition to challenges around definitions, it may not be amenable to “treatment” the way most medical issues are treated. For medical professionals, so often focused on “fixing” things, this inability to solve an issue may feel very disconcerting and dissatisfying. Often, rather than “fix” existential suffering, what is asked of clinicians is simply to be present (as reflected in the palliative care teaching, “don’t just do something, sit there!”). Being fully present in the face of human suffering can be terribly challenging and places great demands on the clinician who may feel uncomfortable and inadequately trained for such an “intervention.”

An additional complexity for the clinician may stem from the fact that existential suffering may actually arise not just contemporaneously with—but possibly even as a result of—attempts at treating an underlying condition or illness. For example, feelings of existential suffering could easily be exacerbated by the experience of side effects of chemotherapy or organ transplantation such as pain or chronic negative impacts on quality of life. This can lead to feelings of clinician guilt and self-doubt (as in the case of a patient who experiences serious permanent organ damage or even death in the course of stem cell transplantation). Yet medical professionals and healers are obliged to try to relieve suffering. How does one even begin to engage in this daunting undertaking? At times, compassionate presence may be the only possible response to existential suffering.

Encountering Existential Suffering in Children

At the center of every story in PPC is a child. Many studies, in particular from the pediatric oncology literature, suggest that, certainly by adolescence, many children want to be involved in discussions about prognosis and treatment.¹² Alternately, a recent paradigm of “Having a Say” has also been proposed as an approach that focuses more on child and adolescent communication preferences and that recognizes that those preferences may change through the course of an illness.¹³ Unfortunately, even when clinicians do engage children in direct discussions, existential suffering may often be underappreciated. This may be due to parental concerns about clinicians exploring such issues with children, as well as to clinician discomfort with delving into these domains. In addition, simply recognizing signs of existential suffering, as well as the language used by children to express it, may fall outside the knowledge base and comfort zone of some providers. And yet existential suffering in children is a very real entity and, in fact, is one that can involve devastating psychological and emotional distress. Trauma and illness can impact children’s sense of identity and grounding, affecting their faith, worldview, and sense of security. It is important to recognize that adult-based constructs around suffering and existential issues are not always directly transferrable to children.

Part of the challenge stems from variability in developmental maturity as “children” grow from a legal age of minority to one of adulthood. In addition, the idea of existential suffering is linked with personal concepts of meaning, spirituality, and place in the world that mature with time, developing along with one’s experience of the surrounding world. How distress is experienced and expressed by a child depends on developmental stage and neurologic status and may change over time. Fowler’s proposed stages of spiritual development provide one model of how an individual’s understanding and expression of spirituality may develop through the life cycle.^14,15 This model is fluid and individuals may move through different stages of spiritual development in nonlinear fashion depending on life events.

It has also been well established, in the work of Robert Coles and others, that even from a very young age children may experience rich spiritual lives.¹⁶ These experiences may be expressed nonverbally, for example through artwork. Table 18.3 presents one model of how children’s spiritual development may track with developing concepts of illness and death, along with potentially helpful interventions at each stage.¹⁷

Related posts:

Quality in Pediatric Palliative Care Program Development The Language of Pediatric Palliative Care Practical Aspects of Palliative Care Communication Advanced Heart Disease Children’s Voices: The Experience of Patients and Their Siblings

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