Eric Cassell’s work further delved into this concept, recognizing suffering as anything that threatens the integrity of the person, in all or any its manifestations – body, mind, relationship, and existential (Cassell 1991). In his landmark NEJM 1982 article, he explores the different dimensions of suffering and challenges the clinician to lend strength and tend to the suffering of the patient – by first acknowledging that suffering is a phenomena not solely defined as physical pain and not occurring due to infractions of a linear or progressive fashion (Cassel 1982). Cassell challenged clinicians to recognize the complexity of the personal and human experience of suffering, as one that involves both the physical experience of pain, as well as any form of severe distress that threatens the integrity of the person in their physical, spiritual, relational, cultural, political, behavioral, historical, trans-personal, and transcendent selves that suffer. While we all face challenges to our personhood on an almost daily basis without experiencing persistent suffering, we mitigate the experience of suffering by adapting or by rebuilding our sense of self. When, however, the threat to self is large enough, as is the case of unremitting chronic pain and illness, when suffering is intense, Cassel states that recovery requires help from others, finding meaning in the suffering, and ultimately, transcending. This transcendence is a deeply spiritual experience that may, or may not, include formal religion (Cassel 1982). He thus reminds clinicians to assess not only the physical aspects of pain, but to assess and make appropriate referrals for the treatment of the multiple dimensions of suffering, or “total pain.”

Overcoming suffering through finding meaning and transcendence in the experience was perhaps most thoroughly explored by Viktor Frankl, a physician, Holocaust, survivor and founder of the field of Existential Psychology. In his treatise, Man’s Search for Meaning, Frankl outlined three primary types of suffering, physical (pain, somatic diseases), psychological (emotional hardship, psychological disorders), and spiritual (lack of a meaningful life, moral dilemmas). During his imprisonment in Auschwitz, Frankl observed that prisoners who found a reason to live and those who died with lack of meaning proved the truth of Nietzche’s statement: “if we possess the why of life then we can put up with almost any how” (Nietzsche and Hollingdale 1968, p. 74). From this, Frankl developed the psychotherapeutic approach known as logotherapy, from the Greek word logos, which means study, word, spirit, God, or meaning. Like Saunders, Frankl was also concerned about the prevailing reductionist biomedical model of medicine that tended to value only the physiologic processes of human experience. He saw the need to humanize both medicine and psychology through the recognition of a balance between the biopsychosocial including the physical, mental, emotional, and spiritual dimensions of humankind. This perspective was solidified in Auschwitz where he saw prisoners’ physiology weaken to the point of death when the spirit or person lost their sense of purpose. In amazement, he also noted the ability of those who held on to their search for meaning also maintained their physical and psychological resilience (Frankl 2006).

Meaning can be found, according to Frankl, through experienced values (what we receive from the world, i.e. love), creative values (what we contribute to the world), or attitudinal values (which may be obtained through unavoidable suffering). He quoted one boy prisoner of Auschwitz, Yehudi Bacon, who said, “suffering can have a meaning if it changes you for the better” (Frankl 2006, p. 67). These three values, however, which Frankl postulates are but initial steps toward transcendence or supra-meaning, which relies on something greater than our selves. “In spite of all the enforced physical and mental primitiveness of the life in a concentration camp, it was possible for spiritual life to deepen. […] They were able to retreat from their terrible surroundings to a life of inner riches and spiritual freedom” (Frankl 2006, p. 34).

Max Harvey Chochinov, a contemporary palliative psychiatrist, recently confirmed these observations in numerous studies, including one where he evaluated 253 patients receiving palliative care with the 25-item, self-report Patient Dignity Inventory (PDI) to assess the spiritual “landscape of distress in the terminally ill.” He noted an inverse correlation between “sense of meaning” and “intensity of distress” (Chochinov et al. 2009). Chochinov has continued to incorporate this concept of assessing suffering and resilience to distress through an assessment of the “whole person,” rather than the purely physical point of view more commonly found in traditional biomedical practice. The presence of hope (see also Coulehan, This volume) and a sense of meaning both consistently correlate with measurable improvements in the sense of well-being among patients facing the end of life and associated lack of hope and purpose, with distress (Thompson and Chochinov 2010).

Thus, per both Frankl and Chochinov’s work, logotherapy, or exploring a patient’s sense of meaning, is not postulated to directly affect pain pathways. Instead, that sense of meaning and the exploration of meaning seem to help patients with life-limiting illness cope with and to some degree, transcend pain and suffering. In these studies, the primary tool for understanding issues of pain was through patients’ stories and narrative (see also Morris, This Volume). Hospice and palliative care teams can also apply a modified model of Maslow’s Hierarchy of Needs to the interdisciplinary meeting to help delineate roles each team-member might play in the alleviation of pain and suffering.

Dr. George Engel first described the bio-psycho-social model of disease in the 1970s (Engel 1977). This model quickly became the standard model through which many mental health clinicians came to view disease, illness, and treatment (Schwartz 1982), although the process of adoption was somewhat slower by the biomedical field (Engel 1989; Engel 1992). This model recognizes that the individual self is multi-faceted and it describes a framework for understanding how the biological, psychological, and social factors of an individual’s life affect the experience and meaning of medical illness and pain. In addition, this model also recognizes that bidirectional pathways exist between the three domains (biological, psychological, social), and each domain can positively or negatively impact other domains. Disease/illness conceptualizations that incorporate the bio-psycho-social model can also explain how individuals may experience pain without a specific etiology, or how individuals may experience varying levels of pain within the context of a recognized disease or injury process. As the bio-psycho-social model seeks to understand the interaction between an individual’s medical status, mental health status (including cognitive appraisals of his/her medical status), and sociological factors all interact to impact a patient’s overall well-being.

The Gate Control/Neuromatrix theory of pain (Melzack 1999; Melzack and Wall 1965) builds upon the biopsychosocial model with a direct application to the pain experience. It describes the relationship between the biological, psychological, and social aspects of the individual pain experience and how each domain may influence an increase or decrease in the pain experience for the individual via descending pathways from the brain (Eippert et al. 2009). This model also continues to inform multi-factorial and multidisciplinary pain management and treatment.

Over time the empirical research evidence has supported the Bio-Psycho-Social and Gate/Neuromatrix models’ thesis that psychological states impact the level of pain experienced by the individual (Middleton and Pollard 2005). Some of those psychological factors mediating the pain experience that have been identified by the research include negative mood, anxiety, social support, sense of self-efficacy and control, and adaptive coping strategies (Covic et al. 2003; French et al. 2000; Keefe et al. 1997; Lefebvre et al. 1999). However, these factors still fail to completely explain the observed variability across individuals’ experiences with pain.

In an attempt to create a more comprehensive model, researchers have also begun to incorporate spirituality into the biopsychosocial model (McKee and Chappel 1992; Sulmasy 2002; Wachholtz et al. 2007). The resulting biopsychosocial–spiritual model acknowledges the potential impact of ­spiritual and religious variables in mediating the biological and psychological experience of pain and illness (Wachholtz and Keefe 2006). The addition of spiritual coping mechanisms is still congruent with the Gate/Neuromatrix model since spirituality also affects the individual’s experience of pain and his/her social, psychological, and physical environment.

Culture and religion-specific factors may also play a role in patient’s experience and interpretation of chronic pain and suffering. The clinician, therefore, must also consider the patient’s cultural and religious beliefs about death and dying when evaluating factors influencing the experience of pain, identifying treatment needs, and developing appropriate interventions. This is a topic that will be more extensively addressed in other chapters of this series (See also Hallenbeck, This Volume; Coulehan, This Volume). Because it is so important to identify the potential interplay between pain, suffering, and spirituality, we have included a brief table (Table 36.1), to address the role of suffering, images, and potential cultural symbols of suffering in each of the five major world religions.

Dr. Elizabeth Kubler-Ross is probably the most well-known and most cited figure in palliative care medicine. Through her qualitative research using interviews with terminally ill patients, she identified the now-classic five stages of grief: (1) denial and isolation, (2) anger, (3) bargaining, (4) depression, and (5) acceptance (Kubler-Ross 2009; Kübler-Ross 1997). These stages are not a one-way track. Individuals may move forward, backward, or skip stages altogether as they process their upcoming loss of life. The majority of the research supporting Kubler-Ross’ stages of grief has used qualitative methods (Kubler-Ross 2009). The limited quantitative research in this area also supports this model (Maciejewski et al. 2007). In a study of 270 oncology patients treated for mental health via a psychiatry consultation liaison team, individuals who were at the “acceptance” stage had fewer mental health disorders, better compliance with treatment, and more coping resources compared with individuals at the anger/aggression stage (Grube 2006). While we can identify what is healthy coping in relation to stages of grief, to the best of our knowledge, there is no empirical research on how progression through the stages of grief affects the patient’s experience of pain. We suspect there are probably changes that occur in the perception of pain, after adjusting for disease progression, when patients are in the different stages (e.g. higher in the anger stage; lower in the acceptance stage). However, despite the frequency that the Stages of Grief Model is used as a basis for psychotherapy treatment plans for palliative care patients, and our suspicions that these stages are related to pain, to the best of our knowledge, no empirical data exists to support this finding. Additional qualitative and quantitative research needs to be done in this field to estimate timelines for the stages, differentiate between normal and abnormal grieving processes, identify key information that would allow physicians to make more timely referrals to a mental health specialist, and assess the appropriateness of this model across different cultures and generations.