Janice M. Morse and Charlotte Pooler
MODES OF RELEASING IN THE PRAXIS THEORY OF SUFFERING: THE RESPONSES OF WOMEN TO THE RESULTS OF BREAST BIOPSY
For the next thirty-six hours this situation was precarious. They would answer none of my questions. They said only, “Let’s wait a couple of days,” with little pats on the shoulder that filled me with dread.
—Martha Lear (1980, p. 334)
The experience of suffering is extremely common, yet as a process or an emotional response, it has not been carefully explored and described by researchers. In fact, more careful descriptions appear in the literature and movies. Over the past 15 years, Morse and her colleagues have conducted a number of descriptive studies into the experience of suffering and developed the Praxis Theory of Suffering (Morse, 2001, 2011; Morse & Carter, 1995, 1996; see also Chapter 35).
Despite these studies, several important questions remain. The Praxis Theory, as conceived, has individuals entering a stage of enduring (in which emotions are suppressed) and entering a stage of emotional suffering (in which emotions are released) before eventually relinquishing suffering. A question remains: Must all who suffer exit enduring through emotional suffering, or are there other emotional routes to exit enduring?1
In order to answer this important question, a naturalistic experiment was designed. We identified a situation that placed the participants in profound enduring, and then that which was being endured was removed for some participants and continued for others. Conditions for this naturalistic experiment occur when women undergo diagnosis for breast cancer and the results are negative. Those who receive a positive diagnosis must continue within the experience of suffering, and provide a comparison group. By conducting a grounded theory of women who are waiting to hear results, we were able to explore and, if necessary, extend/expand/clarify the Praxis Theory of Suffering.
Finding a breast lump oneself, or receiving the results of a possible abnormal mammogram or breast examination, is a most frightening experience that immediately involves the threat of disabling surgery, long-term sickness from chemotherapy, disability and deformity, and death. Because most women have known others who have had breast cancer, subsequent long-term illness from treatments, and have died, it immediately places women in a state of panic, horror, and profound fear (Montgomery & McCrone, 2010; Novy, Price, Huynh, & Schuetz 2001; Poole et al., 1999; Witek-Janusek, Gabram, & Mathews, 2007).
Therefore, waiting for the diagnostic results of breast cancer is considered one of the most stressful periods ever experienced by women (Lally, 2010; Lally, Hydeman, Schwert, Henderson, & Edge, 2012; Lebel, Jakubovits, & Rosberger, 2003; Poole & Lyne, 2000; Thorne, Harris, Hislop, & Vestrup, 1999; Woodward & Webb, 2001). The emotional state of women during this time confounds practitioners to the extent that there is confusion and uncertainty about how best to support these patients (Haas, Kaplan, & McMillan, 2001). Although this experience has been well described, there is little known about women’s responses, and a comprehensive framework of strategies women use when enduring this stress and the effectiveness of these strategies in alleviating distress are lacking in the literature. There is a paucity of information on how the stress is resolved with the news of the biopsy results. The terms used in the literature describing such states as “distress” (Iwamitsu, Shimoda, Abe, & Okawa, 2005; Lowe, Balanda, Del Mar, & Hawes, 1999; Northouse, Jeffs, Cracchiolo-Caraway, Lampman, & Dorris, 1995), “anxiety” (Deane & Degner, 1998), or even “uncertainty” (Montgomery, 2010) appear, from a qualitative experiential perspective, as a profound understatement.
Panic escalates during the diagnostic period, which, in our study, lasted from a few days to 3 weeks. During this period, women typically are called (phoned) to come to the clinic for a repeat mammogram and/or biopsy, and then, following the procedure, must wait for the results. Frequently, negative biopsy results are given on the phone; if the results are positive, then the women is not told the result on the phone, but is given an appointment for a consultation with the physician and asked to “bring someone with her.” Thus, women are able to “forecast” if the news is bad (Morse et al., 2014).
How do women control their panic during the diagnostic period? The women’s affect has been a constant concern in the literature, being linked with posttraumatic stress disorder (PTSD; Naidich & Motta, 2000), depression (Lampic, Thurfjell, Bergh, & Sjödén, 2001), and psychological distress (Iwamitsu, Shimoda, Abe, & Okawa, 2005). The majority of this research uses quantitative measures (Maxwell et al., 2000), and often women’s unexpected flat affect, rather than distress, causes problems for researchers. For instance, Iwamitsu et al. (2005) are puzzled by “emotional suppression” and flat affect manifest in this population, and other researchers concur that women do not report anxiety.
A grounded theory of the process of the entire diagnostic experience from finding a lump or having a suspicious mammogram was developed also from the data used in this study (Morse et al., 2014). It revealed a three-stage process. In Stage I, women faced the idea of cancer by feeling stunned, grappling with the idea, and bracing for the biopsy. Stage II, waiting to hear the results, contained processes of enduring, in which women were wrapping their minds around it, were controlling distress, and were keeping going. Finally, in Stage III, women who heard positive results were confronting their worst fears, and were continuing enduring; those who had negative results enabled releasing from enduring and sharing the good news. The core variable was preserving self, represented the participants’ strategies in minimizing suffering, thereby concealing their distress from others and maximizing day-to-day functioning by normalizing their affect.
In this chapter, we explore in greater detail the women’s reported affect and emotional responses to breast cancer diagnosis, primarily in Stages II and III, using the Praxis Theory of Suffering (see Chapter 35) as a scaffold, to explore those who had a negative result, and how they exited the state of enduring, compared with those who had a positive result.
The Praxis Theory of Suffering
The Praxis Theory of Suffering has been developed from qualitative research, including interviews and observations, and encompassing numerous acute and chronic illnesses and injuries, the dying, and bereaved relatives. All interviews have been conducted as unstructured open-ended narratives that enable the person to tell his or her story without interruption (Corbin & Morse, 2003). Observational studies of persons’ suffering have been conducted by videotaping in the trauma room and videotaping interviews, thus eliciting behavioral indices of the states of suffering.
Briefly, the Praxis Theory of Suffering consists of two major states, enduring and emotional suffering. When enduring the person suppresses emotional response to whatever is being suffered. They deliberately block thoughts of the event, and thereby block emotional responses. They maintain an immediate focus, blocking the past and the future, thus controlling thoughts of what the potential outcome of the event may mean. They focus on one step, one task at a time. This cognitive suppression reduces the emotional response, removes panic, and enables day-to-day functioning. However, the suppression requires constant vigilance and effort, and the process of suppressing the events and the motions may also suppress behavior, produce a flat affect, create a monotone voice, and loss of spontaneous movement, probably a lumbering gait. They speak in short sentences, in a monotone, barely moving their lips. They have an unfocused, gaze and little facial expression.
People who are enduring think they are coping well, even though they may make poor judgments (such as driving through red lights and stopping at the green). Others may stand away from them, avoid touching them, or just stand quietly or be with them.
Emotional suffering is a state in which the person recognizes that which is being suffered, and responds with weeping and distress. They have a hunched posture, a distraught expression, and cry and may talk incessantly about their suffering. Other are moved to comfort and support the person, including coming close and using touch.
We asked: Do women who receive a negative result exit the Praxis Theory of Suffering from emotionally suffering? Or do those who receive negative results exit the Praxis Theory of Suffering from enduring?
Women who volunteered to be in the study were invited to participate in one or two unstructured, audio-recorded telephone interviews, intended to elicit their experience with minimal direction from the interviewers. Because we were interested in the participant’s experience as it occurred, in this study we used narrative unstructured retrospective interviews to avoid “leading” the participant and with the interviewer primarily listening. Following obtaining informed consent (which informed the participant about the study and obtained verbal consent), we asked only: “Tell me …,” inviting the participants to begin their story at whatever point they wished, and to take as long as they desired in the telling.
Telephone interviews were set up by appointment so that the participants knew they would be on the phone for 1 to 2 hours, and could ensure a private time without distraction. In this way, the participant would be free to express emotions and maintain dignity, for instance, while crying. These interviews were conducted with minimal interruption by the researcher, and emotions were easily identified over the phone. If additional questions or clarifications were required, they were asked at the end of the interview or in a follow-up interview.
With unstructured interviews the emotions of the participants reflect those experienced toward events at the time to which they are relating. This phenomenon, emotional re-enactment (Morse, 2002), may be used as an indicator of validity of the interviews. During the interview process, the participants become immersed in their stories and their own emotional responses. Institutional review board (IRB) approval for this project was provided by the University of Alberta and the University of Utah. All participants provided written consents, including permission for the release of their images.
Women who had undergone a breast biopsy and who had received either positive or negative results for breast cancer were solicited from a breast clinic (with the assistance of staff) or from newspaper advertisement, in a large western Canadian city. Thirty-three women participated in the study; 14 learned about the study from the breast cancer clinic, and the remainder responded to an advertisement placed in the health section of the daily newspaper. Women were aged between 32 and 76 years. From this, 11 women received a positive diagnosis of breast cancer and 24 a negative result. We also interviewed two physicians specializing in breast cancer and one clinic nurse, for their general observations of the responses of women who had been given either “good” or “bad” news; all three were female.
Thirty-three tape-recorded first interviews with women participants were conducted by phone. Seven women were interviewed twice. Two interviews with the women participants were conducted face to face by their preference, as were the interviews with the staff.
Tapes were transcribed, and according to the methods of grounded theory, were coded and theoretical memos were placed directly into the text in capital letters, to identify notes from the participant’s text. Categories were formed by copying text with common topics into separate files, and synthesizing the contents.
Expressed emotions, identified by content and expression, were mapped by event, to reveal enduring or emotional suffering, and stages of enduring and emotional suffering were noted on a timeline. Specifically, the researchers were interested in the demonstrated and reported characteristics of enduring, and manifestations of emotional suffering, as follows.
Verbal Indices: (a) Enduring: the participants use short sentences, speak in a monotone, and voice lacks expression. Speech is present-oriented; content focuses on events, rather than feelings.
(b) Emotional Suffering: emotional tone of distraught distress; crying frequently. Verbal content may be future- or past-oriented.
Emotions were then mapped to illustrate major affective responses over time, from the time the breast abnormality was discovered until just after the results of the breast biopsy were learned. Placing the reported major events horizontally across on a “map,” using markers for “enduring,” “normal,” “emotional suffering,” and “relief,” enabled illustration and sorting of the patterns of responses.
The Experience of Breast Cancer Diagnosis as a Suffering Response
When interviewing the participants, they often chose to first relate the “medical” story, often as a rote recitation of events and dates and treatments to the present time. This preoccupation with facts rather than felt emotions is indeed an indicator of the state of enduring. Once the medical details of the context were related to the interviewer, the interviewer would then ask the participant to return to the beginning to elect her emotional response, with a question such as, “Tell me, what was that like for you?” This question, in addition to the trust that had now developed in the interview, encouraged participants to provide the experiential details of their experiences essential for our analysis. Participants’ emotions reflected the felt emotions experienced at the particular stages of the experience. When enduring (for instance when waiting for results), indices of enduring were evident in the tone and verbal content of the participant’s story. Similarly in emotional suffering, the emotional state and crying were evident.
Comparison of the Emotional Responses of Participants to Positive and Negative Diagnostic Results
Following responding to “hearing the news,” the experiences and responses fell into two broad categories: (a) living with the possibility or probability of cancer; and (b) escaping from the possibility or probability of cancer.
Discovering the Lump/Learning of a Suspicious Finding
Women’s narratives during the period that they were forced to wait for confirmation that they did or did not have breast cancer were surprisingly similar. Hearing of an abnormal finding on mammogram or finding a lump in their breasts was one of shock, fear, and dismay:
I mean, I; I just, I just knew, there was, there was something. And I mean, the girls that did the ultrasound, well you know, she just said there was a spot they wanted to check but you just have a feeling that, that there’s a problem somehow. You just do. It’s just a gut feeling.
I really had this fear that I had gone through for a week with a whole series of tests. A week, week and a half. It was just a real turmoil that I will never forget. And the fear is still with me. I, I go to, for a mammogram and I wonder, are they really catching everything.