Existential pain—an entity, a provocation, or a challenge?

1. Introduction 

During the 1950s, pioneers such as Bonica, Beecher, Maher, Turnbull and others began developing the pain concept, which at the time mainly had a biomedical and somatic meaning.1., 2., 3., 4. A broader approach was needed for classifying pain as acute and chronic, in which the former has an important physiological warning function, whereas the latter is associated with endless, meaningless suffering. This has been the basis of the multidisciplinary approach today found in pain clinics. Recently, alternative classifications of pain have been suggested, with an attempt to define a more mechanism-based treatment strategy and to better differentiate the term “chronic”.5

Concurrently, during the 1960s, hospice care began developing a concept parallel to the multidisciplinary approach at pain clinics. Dame Cicely Saunders, founder of the modern hospice movement, was a trained nurse, social worker, and physician with a Christian background; consequently, she had a broad approach. In her earliest studies during the 1950s and 1960s, she focused on physical pain, but soon noted that in palliative contexts the pain concept must be expanded.6 Initially, Saunders stressed the multidimensionality of pain, and consequently she described “syndromes of pain.” This concept had many similarities with the general outlook in algology, which stresses pain as multidimensional and affected by psychosocial, cultural, and ethnic factors—although, surprisingly, existential or spiritual factors are seldom or never explicitly mentioned.7., 8.

From the early 1960s, Saunders began to use the word pain figuratively as well. For example, in 1963 she noted: “Mental distress may be perhaps the most intractable pain of all”(p. 197).9 She emphasized the connection between pain and mental suffering: “If physical symptoms are alleviated then mental pain is often lifted also”.10 Saunders gradually developed the “total pain” concept that came to include the entire illness: physical symptoms, mental distress, social problems, and spiritual needs. This definition has many similarities with Cassell's definition of suffering.11 According to Cassell, suffering can be defined as a state of severe distress associated with events that threaten the intactness of the person, that is, any aspect of the person—physical, social, psychological or existential.

The concept of “total pain” was revolutionary in the 1960s. It has had a tremendous impact on both education and in practice in the development of the hospice movement, and later also for palliative medicine as a specialty.12 Meanwhile, in palliative care the concept is not necessarily linked, to physical pain. This is obvious in Saunders' definition of spiritual pain: “bitter anger at the unfairness of what is happening (at the end of life) and above all a desolate feeling of meaninglessness. Here lies, I believe, the essence of spiritual pain” (p. 29).13 It should be noted that in this very definition Saunders stresses questions of a general existential nature that everyone encounters, rather than purely spiritual or religious issues.

However, the concept of total pain has been questioned by some, especially physicians who are not familiar with the hospice or palliative care concepts, as “total pain” is not necessarily linked to physical pain. Consequently, we have a situation where the multidimensionality of pain has varying meanings. The “total pain” concept has been criticized within algology since it is not considered to fit under the International Association for the Study of Pain (IASP) definition: “Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”14 The criticism is directed towards the symbolic and ambiguous use of the word “pain,” as such use may be confusing in clinical situations: it is not evident whether “total pain” refers to pain or other forms of suffering.

The issue becomes even more complicated when focusing specifically on the aspect that includes existential/spiritual pain. From an algological point of view, the concept could refer to an existing physical pain, in which the expression of pain is reinforced by existential suffering, or it could refer to pain described by the patient in physical terms in which extreme existential suffering is the only demonstrable cause.11., 15. In this manner the existential pain could be considered to be a variant of “somatization disorder” and “pain disorder” as defined in the American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders, DSM-IV, where this is defined as (criterion C): “Psychological factors are judged to have an important role in the onset, severity, exacerbation, or maintenance of the pain.”16 “Psychological factors” would in this case be replaced by “existential factors,” especially considering that DSM-IV today acknowledges existential/spiritual factors and life crisis to be matters of clinical importance.16 It should also be possible to consider the reverse: poorly controlled pain in terminal illness (e.g., cancer) activates death anxiety, the physical pain thereby producing extensive existential consequences,17 namely, there exists a mutuality between somatic pain and existential suffering.

Although the concept of existential pain or spiritual pain is sometimes used in clinical situations, a systematic search in Medline, CINAHL, and Psychinfo only gives a few hits. Most of these articles are personal reflections; few empirical studies exist. We could only identify one author who defined existential pain in bodily terms but with probable existential causes.15 The others defined existential or spiritual pain as a form of existential suffering.18., 19., 20., 21., 22.

In general, suffering is hard to define but most authors, for example, Cassell, conclude that suffering is experienced by persons, not merely by bodies and that suffering occurs when an impending destruction of the person is perceived.11., 23., 24. It continues until the threat of disintegration has passed or until integrity can be restored in some other manner.11 Further, suffering has a temporal element: it influences the person's perception of future events. Although pain is not interchangeable with suffering, unrelieved pain is still a significant contributor to suffering.11., 23.

Existential issues in general have been thoroughly analyzed by philosophers such as Kirkegaard,25 Jaspers,26 Heidegger,27 Sartre,28 Frankl,29 and others. These authors address a range of existential questions. Briefly, it can be mentioned that Kirkegaard focused on death anxiety and the dread for annihilation.25 He was the first to make a clear distinction between fear (for something) and diffuse unfocused anxiety (dread). As such, anxiety (e.g., death anxiety) cannot be located and the source cannot be defined, it can neither be understood nor confronted and it begets a feeling of helplessness. Jaspers emphasized the impact of boundary or border situations (e.g., a cancer diagnosis) on human behavior: such unalterable experiences make us either live more intensely, in a more authentic fashion, or make us give up.26 This was also emphasized by Heidegger, who stated that only true awareness of our personal death can shift us from one mode of existence (“unauthentic”) to a higher one (“authentic”).27 We value life when death is a reality.

Heidegger and Frankl also stressed the impact of meaning, although partly from different angles.27., 29. Both stressed that meaning is essential for life and that humans are intentional: looking for or creating meaning, as meaninglessness is impossible to endure. However, according to Frankl, life has an inherent meaning, whereas Heidegger's point of departure was the concept of meaninglessness: There is no given meaning in life and this lack of meaning drives us to search for or create our personal meaning.

Sartre was the forerunner for the concept of man's freedom:28 man is doomed to freedom, meaning that man must always choose and choices create anxiety. However, one is always responsible for one's own life. Also, Frankl stressed the freedom of will: we have freedom to find meaning in existence and to choose our attitude to suffering.

As summarized by Yalom from a clinical point of view,30 there are four basic domains that result in existential thoughts and suffering that are highly significant for the care of the seriously ill and for the concept of existential pain:

Compared with the general concepts of spirituality,31 Yalom's conceptualization of the four broad existential domains has both similarities and differences, which may appeal to and be of importance for a secularized society. McCurdy briefly defines spirituality as “our need and capacity for relationship to whatever or whoever gives meaning, purpose, and direction to our lives. Spirituality thus engages human capacities for self-transcendence and meaning-making.”32 This definition captures the essence of several other definitions.33

In conclusion, it is obvious that existential pain is not a uniformly defined entity, as it obviously can be understood both as existential suffering and/or pain expressed in physical terms. Therefore, the aim of the study was to let three groups of caregivers with possibly different perceptions define the concept: hospital chaplains, physicians in palliative care and algologists. Focus was both on the definitions and the key words used in their descriptions.

2. Methods 

A questionnaire was sent to a) all members affiliated with the Association for Swedish Hospital Chaplains (n=231), b) every second physician (from an alphabetical mailing list) who worked and were members of the Swedish Society of Palliative Medicine in 1999 (n=134 of 264) and c) all physician members of the Association for Swedish Algology (i.e., specialists in pain treatment) in 1999 (n=122). As anonymity was guaranteed, no demographic data were collected, but as an approximation from the members' lists, about 30–40% are women, and most of the respondents are experienced clinicians, generally in the age span of 35–55 years. If the group is representative for other Swedes, it can be approximated that about 5–6% attend church at least once a month and only about 2–3% do it every week.34

All three groups were asked to anonymously define an open-ended question “How do you define the concept existential pain?” The physicians were also asked to reply whether or not the concept was of significance to them, as well as whether they encountered such patients. The hospital chaplains were also asked to complete another set of 11 open-ended questions, for example, which questions palliative care patients generally pose to hospital chaplains (data published elsewhere).35

Responses were received after a reminder from 173 hospital chaplains (75%), 115 physicians in palliative care (86%), and 113 physician specialists in pain medicine (algologists) (93%). Of these replies, 150 from hospital chaplains (92 chaplains, 47 deacons and 11 others, all of whom functioned as hospital chaplains), 111 from palliative physicians, and 90 from algologists were possible to use; the others had missing data (Table 1).

Table 1. Number of Participants and Response Rates

		Chaplains		Palliative Care Physicians		Pain Specialists
		n	%	n	%	n	%
	No. of questionnaires sent	231	100	134	100	122	100
	No. of questionnaires returned	173	75	115	86	113	93
	No. of questionnaires filled in	150	65	111	83	90	75
	Total number of words (Total: 11,834)	2,527		5,787		3,520
	No. of words per response (range 1 to 1,430 words)
	Mean (Median)	17 (15)		52 (43)		37 (26)
	Total no. of codes	343		361		125
	No. of codes per responsea	2.3		3.3		1.4

a Each single response (i.e., definition) could contain fragments that were possible to allocate to several codes, for example, “existential isolation” and “meaninglessness.”

2.1. Content analysis 

The open answers covering the definition itself varied from one single expression (e.g., “life crisis pain”) to 1,430 words (including several case histories), but in most cases involved 20–50 words. In total, 401 (of which 351 were useful) answers to the open-ended question were independently read through by two of the authors (SS and PS). On repeated reading, meaningful units were identified and coded (e.g., “meaning of suffering”). A saturation of new codes was reached at a number of 51 codes. This process was also done independently by the above authors.

The next step was to allocate these 51 codes into more comprehensive categories. It was obvious from the initial reading (naïve reading) of the responses that most of the contents and the 51 codes dealt with general existential issues rather than with bodily pain. Consequently, Yalom's four existential domains were used as preconceived main categories: namely, freedom, meaning/lessness, isolation, and death.30 Each main category was divided into several sub-categories (not preconceived), which are presented in Table 2. Generally, no interpretation was needed for the coding, as the statements were explicit, but in a few cases the statements could be attributed to different codes. The initial interrater reliability was 90% between the two people who coded (PS, oncologist and palliative physician, and SS, SRN and chaplain). One example of initial discrepancy in coding was “life after death” where one coded it as “Death and dying” and the other coded it as “Religious questions.” In cases that were initially coded differently, 100% concordance was reached after discussion. The slightly different classifications reached by the two authors above were also separately analyzed to control whether they significantly influenced the end-results comparing possible differences between answers from the categories of caregivers. Because no such difference was seen, the data presented comprise a compromise between the two authors' classifications.

Table 2. The Description of “Existential Pain” Made by Chaplains, Palliative Care Physicians, and Pain Specialists, Categorized into Four Existential Categories According to Yalom (30)a

	Isolation/Loneliness
	Existential isolation
	Abandoned by God
	Abandoned by people, vulnerability, disconnectedness
	Relations
	Meaninglessness
	Meaning of life, life-conditions
	Meaning of suffering/death
	When life is painful (no meaning)
	Lack of coherence
	Meaninglessness (lack of hope, feeling of emptiness, bitterness, restlessness, resignation)
	Religious questions related to meaning
	Freedom
	Choice in life, not reconciled with life/people
	(No) mission in life/what became of my life, my responsibility
	Existential guilt
	Forgiveness, justice
	Death
	Death anxiety
	Transience of life, loss of existence, future
	Dying
	Impotence, helplessness, uncertainty
	Life after death, annihilation
	Separation from loved ones
	Spiritual pain and distress, crisis of life
	Remaining
	Existential=psychosocial
	Cannot/do not want to define

a The subcategories were not preconceived, but emerged from the analysis.

A separate analysis was performed in order to find whether the respondents considered existential pain explicitly or implicitly as suffering with or without clear connection to physical pain as defined by IASP.

3. Results 

Answers from 150 chaplains, 111 palliative physicians, and 90 pain specialists were useful. Thus, in total 351 inquires comprising 11,834 words were analyzed (Table 1).

The majority from all professions considered the issue important but difficult to answer. Seven pain specialists (8%) and one palliative physician (1%) felt provoked by the expression “existential pain.” They meant that the terminology should be omitted in all contexts because it is unreliable and confusing. Thirteen pain specialists stated that they could not, or it was impossible to, define the concept.

3.1. Existential suffering 

In many cases (146 chaplains, 73 palliative physicians, 44 pain specialists) existential pain was described explicitly or implicitly as suffering with no clear connection to physical pain. Thus all groups used the word pain as a clear abstraction within Yalom's categories (freedom, meaning/lessness, isolation, and death) (Figure 1 and Table 2).

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Fig. 1. Percent of coded categories within each of Yalom's categories. Physicians considered the concepts of freedom and isolation less important than chaplains. Questions of meaning are considered important by all professions. The concept of death is considered more important by the physicians than by the chaplains. (P<0.001).

Compared to the physicians, chaplains described existential suffering more often in terms of guilt, isolation, and religious questions, such as that of God's absence, prayer, the unexplained relationship to God or faltering faith, in contrast to physicians who focused on issues without religious connection. Physicians focused significantly more often on death anxiety than did the hospital chaplains (P<0.001), and the palliative ones laid more stress on death anxiety related to annihilation, meaning of life-questions and impending separation than pain specialists (P<0.01). Pain specialists, who regularly encounter patients with never-ending chronic conditions, were more prone to emphasize the painful living, that life hurts, a situation that chronic pain patients often describe (P<0.01).

Six brief quotes exemplify this below. Explanations for the coding are found in Table 2. Existential pain (as an abstraction of existential suffering) was associated with experiences such as:

Chaplain 27: “The feeling of being abandoned by God, people pray without achieving any contact” (coded as existential isolation and meaninglessness)

Chaplain 12: “Guilt, shame, why? Is this all there is? What does God mean? Has He forgotten me?” (coded as freedom, meaninglessness, existential isolation)

Palliative care physician 34: “Feeling of meaninglessness, loss of significance … standing outside the community and the sense of not belonging” (coded as meaninglessness, existential isolation)

Palliative care physician 36: “Pain caused by human conditions, knowing you're going to die” (coded as death)

Pain specialist 61: “A painful and complicated insecure relationship to the community. Lack of trust” (coded as existential isolation)

Pain specialist 22: “With chronic non-cancer pain: ‘Living is painful’; with malignant pain: ‘Dying is painful’” (coded as meaninglessness, death)

All groups used the word pain as a clear abstraction at times. Meanwhile, in these descriptions the awareness that the core problem involved “spiritual pain” was completely clear (”spiritual pain of life” “painful life,” etc.); it did not concern a primary physical pain, but instead sources of suffering.

3.4. Key words and the number of words used by the three groups 

The key word frequency analysis (Figure 2) disclosed that words such as God, guilt, and forgiveness were frequently used by chaplains, whereas words such as meaning, soul, body, and death were primarily used by palliative physicians. The most frequent words used by pain specialists were pain, psycho∗ (truncated word), and anxiety. In Figure 2 only the 16 most frequent words are presented.

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Fig. 2. A histogram of frequencies of the 16 key words without attention paid to the context. Every key word is recorded only once/respondent. Chaplains (n=150), Palliative physicians (n=111), Pain specialists (n=90). Palliative care physicians focus on meaning, soul, and death issues, whereas pain specialists underscore the impact of psychological factors. Chaplains stress religious and guilt issues.

4. Discussion 

Clearly, there is currently no standard definition of existential pain. Occasionally, bodily pain is in focus,15 but generally existential pain has been used as a metaphor for suffering.13., 18., 19., 20. The hospital chaplains of this study defined it exclusively as existential suffering, with an emphasis on existential guilt and unresolved religious questions. The palliative care physicians focused on issues of meaning and death anxiety, which can amplify the suffering from pain and which definitely reduce quality of life regardless of whether pain is present. The pain specialists emphasized the pain of living, with never-ending suffering, particularly in relation to chronic pain. Thus, existential pain is not an entity today. Some pain specialists were clearly provoked by the concept, referring to the IASP definition of pain, which does not accept the broad abstract definition of “total pain.” Also, however, a significant minority of palliative physicians reported the concept to be troublesome, particularly in communication with other physicians. They preferred to use concepts such as existential suffering or existential anxiety when referring to suffering and “pain” (regardless of origin) only when a physical distribution was described, in line with some authors.20., 36., 37.

Meanwhile, it was noteworthy that many palliative physicians and pain specialists did see a connection between existential suffering and pain, and many declared that existential questions are of great clinical relevance. This area is often overlooked from the algologic and even from the psychiatric viewpoint. IASP stresses the psychological components in its definition of pain, but does not mention the existential component. DSM-IV describes “pain disorder” and “somatization disorder,” and explains the significance of psychological components, but does not explicitly mention about existential components that obviously are central for people in crisis, regardless of whether they are believers or atheists. Still, some of the pain specialists in fact defined existential pain explicitly as a variant of somatization disorder. Further, it is possible that the way of expressing oneself, including vocabulary, differs between professions, not at least by educational differences between medical and theological faculties, not necessarily implying different meanings of the concept.

Not surprisingly, it seems that pain specialists more often refer to the IASP definition of pain, which does not explicitly include existential issues, though these are implicitly meant to be covered by “psychological factors.” Superficially, the concept “psychological” could also include existential and spiritual questions, but in its strict definition, the issues are not interchangeable. Nearly all cultures emphasize the distinction between body, mind, and spirit (in Greek: soma, psyche, and pneuma). The psyche usually refers to intrapsychological processes such as anxiety and depression, which are sometimes related to physical illness such as cancer or pain; sometimes to psychosocial factors, such as poor relationships or economy, or to primary psychiatric illness. In its classic meaning, the existential refers to issues in a greater context, beyond the individual: “Why do we live, why must people die, why is there suffering, what is the meaning of life when everyone is going to die anyway, is there a God?”

From a semantic point of view, suffering and pain are sometimes mutually referred to as synonyms, though the former has a broader use, for example, suffering from poverty.11., 23. Thus, a minority of physicians prefer the concept existential suffering, actually in agreement with the chaplains who frequently stressed religious questions and existential guilt. Today, also distinguished authors of palliative textbooks such as Twycross or Woodruff use the term “total suffering” in their books, rather than “total pain,” when general suffering is referred to.36., 37.

The issue is important in medicine. While we are taught about psychosocial issues, we seldom learn about issues concerning existential life conditions. Yet these are probably of central significance both for the patient with chronic pain and for the terminally ill patient. The team must be able to handle the questions regardless of whether they are primary or secondary. If an extreme existential suffering can reinforce already existing pain or quite simply be the predominant cause of a severe, analgesics-resistant pain, described in terms of bodily harm, it is essential for the pain team to have the expertise to deal with matters of life and death, and also to be able to receive help from hospital chaplains when needed. Both the palliative team and the pain team need to broaden their expertise in these questions.

In line with this, recent investigations have verified what physicians have been intuitively aware of, the connection between existential well-being and psycho-neuro-immunology38 and coping,39 as well as the reciprocal interaction between somatic pain and existential suffering, which is in good agreement with the data of this study.

The structure of the study is a combination of qualitative and quantitative content analyses. The answers to the open-ended question have been subjected to an initial qualitative content analysis (no pre-defined categories) resulting in 51 initial codes (meaningful units). These units have in turn been allocated to one of the existential categories described by Yalom.30 Quantitative differences between the three professions have been presented. Two of the authors have independently searched for meaningful units and classified them with certain different results (inter-rater reliability of 90%). However, this discrepancy did not influence the final outcome, that is, differences between conceptions of the three professions. A further attempt to verify the initial findings was done by a computerized frequency analysis of words, essentially producing the same conclusions as in the content analysis.

In summary, existential questions are of the greatest significance to good palliative care, and for successful pain therapy. However, the concept of “existential pain” is controversial, because different groups define it differently. So far, it is not an entity and for some physicians the ambiguity of the word is clearly provoking. If different groups are to be able to communicate without misunderstanding, there is an educational advantage in distinguishing between existential suffering and pain, even if the concepts are intimately related.

However, the concept is definitively a challenge: a majority of the physicians found the concept relevant to their clinical work, despite its complexity. A division between general existential suffering and (bodily) pain with existential background might be helpful.