Janice M. Morse

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THE EVOLUTION OF OUR UNDERSTANDING OF SUFFERING: THE PRAXIS THEORY OF SUFFERING

The primary role of nursing is to care for those who are ill or are undergoing a physical or psychological health crisis. As a profession, we have developed an extensive base of rote and standardized procedures for caring for the physiological body; as well as some knowledge of suffering in general and the subconcepts, such as grief, and care of the patient and the family when suffering. But our understanding about the behaviors of those who are ill and are suffering remains sorely inadequate. Medicine, as a profession, over the past two centuries has developed a compendium of signs and symptoms, mostly developed from informal observations by practicing physicians. These collectively became an encyclopedic knowledge of behaviors that largely became classified as symptoms providing diagnostic cues. Nursing sorely lags in its comprehension of patient behaviors. Most of our therapeutic interactions are based on “intuition” (a concept that is poorly described and consequently difficult to teach), using trial and error, and implicit, informal learning in the clinical setting.

Yet, human behavior is patterned. In everyday life, we classify and develop lay concepts, and these lay concepts themselves may serve as gateways for researchers to use as metaphors and mirrors to develop the human understanding and the knowledge that nursing is seeking. In addition, qualitative research methods have developed rapidly over the past two decades; these methods themselves provide access, which allows interpretation of implicit and explicit behaviors, and are used as a means to access empathetic insight into the experiences of others. But, with a charge of attending to suffering, nursing has another professional demand: nurses must respond to the needs of the patients within the microseconds that interactions are paced: Nurses do not always have the privilege of knowing what is causing the distress, nor the circumstances that underlie the problem. They must act instantly and based only upon what they see. I call this “reading behavior.” In the clinical setting, nurses must respond rapidly to behavioral cues. Sometimes, as Benner and Tanner (1987) noted, these observed cues have physiological bases (“Mrs. Smith—are you all right?”), but often these behaviors result from emotional distress, and the nurse is required to respond to the distressed patient without knowing or understanding the cause. Yet, even though the nurse may not know the cause, distress is a complex emotion manifest in many ways with many emotional displays that demand different responses from the nurse so he or she may respond appropriately and therapeutically.

In this chapter, I:

BACKGROUND

I have been studying these behavioral manifestations of distress for almost three decades, primarily by conducting various types of qualitative inquiry. Patient participants with a number of different illnesses or injuries (both sudden and chronic), as well as the bereaved, have shared their stories and agreed to be observed. From these data, I have been able to delineate behavioral modes of suffering. When one asks those who are suffering to “tell their story,” in the process of narration, the emotions they felt at the time re-emerge. I call this emotional re-enactment (Morse, 2002), and it lends validity and credence to the research. I collected narrative interviews with those who were recovering from major accidents, illnesses, or bereavement; I also conducted observational research in the trauma room, emergency departments (EDs), and in hospital units. I observed videos of birthing (Bergstrom et al., 2009; Bergstrom, Richards, Morse, & Roberts, 2010), and conducted interviews with patients, relatives, and nursing staff. In the past three decades this has resulted in approximately 27 studies of suffering behaviors.

Despite the emerging patterns from which states of suffering have been identified, behaviors of suffering are neither constant nor stable; the different causes of the suffering, and the different meanings this has for individuals that the suffering signified, result in differences in responses in intensity and duration of suffering. I labeled the first major behavioral state as enduring, and the second, emotional suffering. My goal was to develop behavioral indices of these behaviors, so that nurses may recognize these states clinically, that they may be taught, and so that strategies that ease and relieve suffering (that is, comforting) may be identified (see Chapter 36). I explored how people “exited” the state of enduring if the cause of their distress was removed; and the behaviors that those who were enduring used to release the energy that was contained, without moving into emotional suffering. I observed how people responded to the behavioral cues of those who were enduring, and expanded these databases by using photographs from newspapers and those appearing on the Internet. Finally, I conducted microanalysis of the behavioral transition between enduring and suffering (Morse, Beres, Spiers, Mayan, & Olson, 2003).

Throughout, I noted that, despite the fact that enduring was extraordinarily common, and was even evident in movies,¹ it was not clearly described in the literature.² Of importance is the fact that enduring was a concept that may be observed as participants told their stories during interviews. Because enduring behaviors are so internalized, those who are enduring do not have insight into their own behaviors. They will tell you that they are “managing well,” or are coping “fine,” rather than “bearing it” (whatever it may be) and this suppression inhibits or blocks our ability as researchers to understand their experience.

I explored the second state, emotional suffering, the same way. Those who were emotionally suffering were so focused on their own sorrow that they were sometimes even unable to articulate without sobbing. One student who was studying the experience of fathers of sons who had died of AIDS found fathers too distressed to tell their stories, despite the fact that they wanted to be a part of the study. She gave the father a lapel microphone and took him for a walk on his farm; only then was he able to speak of his suffering.

When narrating their stories, participants transitioned from enduring to emotional suffering, and the patterns of the transitioning behaviors were, in retrospect, evident, even during interviews. Then, in 2003, we constructed and deliberately analyzed these transitional behaviors inherent by collecting videotaped interviews of those who were suffering from various illnesses, accidents, or the relatives of those who experienced the death of a loved one. This enabled us to synchronize the emotional state (as manifest in facial expression [Ekman & Friesen, 2003]) with the content of monologue as their stories unfolded (Morse et al., 2003).

The most extraordinary observation from this research program was that the behaviors were similar between participants regardless of what was being suffered. In hindsight, this should not have been unexpected: If we enter a room where everyone is laughing, we do not need to hear the joke to understand that these people were enjoying something funny. Of course, there was individual variation in the expression—as well as contextual and cultural variation, and variation by age and gender—but the important point is that now we have achieved our interpretative goal: We can now describe the dominant indicators of enduring and emotional suffering, so that nurses may quickly identify and meet the needs of the emotional states of patients who are suffering.

Early Conceptualizations of Suffering

Before 1991, I had a number of master’s students conducting grounded theory studies on a number of topics, but primarily illnesses. In 1991, six of these grounded theories were published in a single volume, The Illness Experience: Dimensions of Suffering (Morse & Johnson, 1991). The title was suggested by the publisher—until that time I was more interested in comfort and comforting, and had not considered that the “umbrella” of this research program was under the rubric of suffering. However, Chapter 33 of this book was the meta-analysis, developing the Illness-Constellation Model, which clearly showed the significance of suffering and provided the initial groundwork for the development of the Praxis Theory of Suffering and the initial descriptions of enduring and emotional suffering behavior. As we began to research comfort and comforting, it was evident that until we understood suffering and were able to interpret states of suffering, we would not be able to understand comforting. This research was also essential to be able to interpret the changing nature of suffering during comforting interactions.

In 1993, I worked with a postdoctoral fellow, Barbara Carter, and she brought her theory of the reformulated self to my attention. In light of this, we analyzed secondary data and developed the enduring further, identified strategies of enduring as ways of preserving self (Morse & O’Brien, 1995), and developed the preliminary model of the Praxis Theory of Suffering (Morse & Carter, 1995). This work continued to be developed, with new versions published in 2001, 2011, and 2015.

Theoretical Cohesion: Targeted Data Collection to Understand States of Suffering

Our insight into the Praxis Theory of Suffering did not come all at once, and the studies described in Figure 35.1 were neither conducted systematically nor sequentially. The conceptualization of suffering occurred over time as the studies were conducted, and, in retrospect, by thinking about the collective whole—“fit” occurred later. The studies contributing to the theory accrued as we first conducted research into the illness experience. These data collected for the “comfort grant” commenced in the ED and trauma centers; video and interview data collected on comforting also contained important data describing states of suffering, as well as descriptions of the ways in which suffering diminished as patients were comforted.³ We asked questions of these studies as a whole, looking for similarities and differences. As these studies were compiled (Figure 35.1), they appeared cohesive, and collectively formed the Praxis Theory of Suffering. Theoretical cohesion allowed us to link the studies and expand the domain of study (Chapter 34). As Mister Rogers sings for children, “Everything goes together, because it’s all one piece,” internal cohesion enables qualitative researchers to explore very broad processes. Theoretical cohesion also provides validity and comprehensive understanding; it explores and applies the same concepts to other populations, thereby expanding the generalizability of the study.

As our observational studies into trauma care and other life-threatening conditions continued, our questions about suffering (in general) became more targeted. For instance, once we understood the temporal relationship of enduring to emotional suffering, and how emotions are suppressed in enduring and released in suffering, we wanted to know:

These findings were then incorporated into the Praxis Theory of Suffering.

THE PHYSIOLOGY OF THE MODEL

The model of the Praxis Theory of Suffering is shown in Figure 35.2. It is not a linear model, although all enter the model when they learn of a distressful event. However, within the model, individuals may take a number of pathways; they may remain in a particular state for as long as they need to, move from enduring to emotional suffering, and find that their emotions are too intense, and again retreat to enduring.

For earlier versions of this model, see Morse (2001, 2011b, 2015) and Morse and Carter (1996).

Entering Enduring

All persons enter the model when they hear of or experience a distressful event. The event may be hearing bad news about their own diagnosis, or their loved one, or they (or their loved one) may have a sudden serious accident or died. These events may begin suddenly, or the persons may go through a period suspecting that something is wrong.

Inevitably, persons pass through a period of shock, horror, and unreality. But as soon as they recognize what has happened, they enter into the state of enduring. Enduring is important; it enables the persons to keep functioning. I argue that the most important function during enduring is the suppression of emotions. They deliberately suppress feelings of panic, terror, or horror, so that the persons may protect themselves or those for whom they are responsible. If there has been a car accident, the persons will “check themselves out” to determine the extent of their own injuries. They ask people standing by (lay first-aiders) “not to move them,” and may even direct rescue persons.

Failure to Endure

“Failing to endure” became an important component of the theory. In retrospect, we saw these behaviors in Laskiwski’s ethnography of spinal cord injured patients (Laskiwski & Morse, 1993)—who had “tantrums,” and “swore”—and later reports of relatives in the trauma center when their loved ones were receiving emergency care (Morse & Pooler, 2002).

Enduring mechanisms may fail if the person is inebriated, has taken drugs, or is in excruciating pain or severely injured. These people may not enter enduring, and are brought to the ED in an extremely distraught state, unable to cooperate with the trauma team (see Morse, 2015).

Enduring

Once an individual gets past the shock and realization of what has happened, the person cognitively “shuts down.” The person enters a state of enduring, in which the person’s focus narrows to the immediate present, and he or she concentrates on “getting through.” These individuals cannot even think about the past and what they have lost, nor consider the future, as their changed reality. People said, “I was just trying to get by, minute by minute” and “I could only do one thing at a time.”

Cognitively “shutting down” included shutting down emotionally and refusing to feel sorrow, fear, or panic. It required great effort, and was reflected behaviorally through “holding oneself together” (actually literally, with the person’s arms across his or her chest) and also the absence of spontaneous movement. People who are enduring have little facial expression and do not move spontaneously; rather, they walk with a rigid, lumbering gait. They gaze into the distance. They do not initiate conversation, and, if spoken to, they reply in monosyllables. Their erect posture and lack of eye contact sends a message to others to leave them alone, and that “they are okay.” These people appear disconnected emotionally; others stand apart from them, and, in fact, if a comforting strategy such as empathy or touch is used, they may “break through” the enduring so that they collapse.

Enduring enables people to continue with their daily lives and responsibilities, albeit mechanically. A study of fathers whose wives were undergoing chemotherapy (Wilson & Morse, 1993) described how fathers managed their work roles as well as family responsibilities (cooking and caring for the children) by “blocking” (enduring) emotions.

People who are seriously ill or injured appear in a state of enduring. The lack of emotional expression conserves their energy. We labeled this state as “preserving self” (Morse & O’Brien, 1995)—a concept that has expanded to refer to strategies that people use to retain their identity in such debilitation illnesses as Parkinson’s disease (Vann-Ward, 2016) or dementia (Surr, 2006). As the person becomes closer to dying, he or she may quietly move from this state, “slipping away” as he or she dies (Olson et al., 2000–2001).

Cognitive mechanisms are in place during enduring to reduce suffering. In the case of agonizing pain, it was clear from the interviews that the person disembodied the painful parts of their body; for instance, referring to one’s own hand as “it” (Morse & Mitcham, 1998). Using this signal in the interviews, we could trace the phase in rehabilitation when these individuals re-embodied once the pain was controlled and “took their bodies back.”

The Attributes of Enduring

From this descriptive research we identified four conceptual attributes of enduring. These are:

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