Abstract
This longitudinal nonheroic narrative study allows familiarity with personal and societal transitions in the self-identity of individuals with life-threatening cancer. The theoretical anchor is Bion’s container–contained theory. Five interviews with a terminally ill hospitalized male in his 30s were conducted along intervals of between 6 and 8 weeks, up to 2 months before his death. Data were analyzed using the selection mechanisms method. Findings provide insights about the hospitalization experience, his grief, and disenfranchised grief. A rigid mode of container–contained relationships with clinicians created disenfranchised grief. Reflection and coherence among self-identities lead to inner strength and emotional growth despite the body’s deterioration. Clinicians have a role in holistic identity transitions of individuals with cancer. Findings illuminate practical recommendations that clinicians may adopt to improve the experience of individuals suffering from cancer at the chronic and terminal phase of illness.
Introduction
The number of new cancer cases per year is expected to rise to 23.6 million by 2030 (Cronin et al., 2018). Cancer narratives are a phenomenological source of insight allowing us to develop knowledge on personal and societal transitions in the self-identity of individuals with cancer as their lives are abruptly threatened by it. Published cancer narratives narrate the cancer experience of children and adults suffering from breast cancer and prostate cancer (Arrington, 2003; DeShazer, 2018; Klaeson, Sandell, & Berterö, 2012; McGannon, Berry, Rodgers, & Spence, 2016). Other narratives dealt with self-identity of cancer sufferers and with coping strategies of their families (Mathieson & Stam, 1995; Van Schoors et al., 2018; Yaskowich & Stam, 2003). A few dealt with the meaning attributed to cancer (Moye et al., 2018; Saunders, Hammond, & Thomas, 2018; Staneva, Gibson, Webb, & Beesley, 2018). Most published narratives are heroic, as narrators shared how they gained control of the cancer and proceeded to remission (Diedrich, 2005). There is a paucity of nonheroic cancer narratives. This study analyzes a nonheroic narrative focusing on Dan’s (pseudonym) grief and disenfranchised grief as his cancer progressed. It illustrates his growth in self-identity despite his body’s deterioration throughout his long hospitalization until death at the age of 33 years.
Self-Identity and Cancer Narratives
Cancer brings challenging physical changes (Charmaz, 2002). Cancer affects relationships (e.g., family, social life, work) leading to emotional and life changes that affect one’s identity (Van Der Molen, 2000). Self-identity is a developmental process of interacting with one’s environment. Self-identity is constructed of narratives that connect to our view of the world (Ricoeur, 1976, 1991). To understand the change in one’s self-identity in the cancer experience, we need to examine the narrative unity through one’s subjective lens. Cancer and grief regarding cancer’s subsequent losses is a subjective phenomenon that is both primary for an individual and universally reflecting on society (Doka & Martin, 2014).
Cancer Through the Eyes of Society
Passages between social identities (i.e., place, social position, roles) may create a liminal identity (Van Gennep, 2013). Liminality in illness refers to the undefinable state in between illness and wellness where one either recovers from cancer or dies from it (MacArtney, Broom, Kirby, Good, & Wootton, 2017). Liminality is a major subjective experience of an existential state of constant oscillation between “normality” and disease. Liminality involves one’s ability to understand both the living and the dying realities (Levinger, Spitzer, & Michael, 2018). Liminality also thrusts ill people into the liminal space of transition, ambiguity, and uncertainty, and for many, into an experience of decline. Liminality marginalizes hospitalized people as dependent, nonproductive members of society (Moreau, 2014). Communication in relationships with clinicians may alleviate the negative experience of liminality for hospitalized individuals. One perspective of caring relationships is presented by the container–contained theory (Bion, 1970).
The Theoretical Perspective
Bion (1970) developed the concept of the therapist as a “container” for processing the client’s experiences, while the client places a part of himself in the therapist. Bion’s concept may be borrowed to a caring relationship in medicine as the hospitalized individual becomes “contained” by the clinician whose role is, among others, to serve as a container for an individual by containing the difficult illness experience, liminality, and grief in order to alleviate the processing of the life-threatening experience (Doka, 2006). The clinician must experience within himself the difficult experience and emotions that are passed on to him and return them to the individual in a processed manner in order to alleviate the suffering and enable growth. To contain the emotions the losses due to illness evoke, within the boundaries of the caring relationships, the clinician moves across closeness and distance in the relationship. Containment yields empathy and compassion to what is happening in one’s mind. Individuals can eventually develop ability to gradually learn to observe and process the difficult emotions leading to containing them.
Bion (1970) presents three modes of container–contained relationships that shape one’s societal identity. When clinicians function as a fragmented container, the individual’s sensitive content floods the container (clinician) which bursts and cannot contain the content. This results in a fragile relationship that negatively affects the individual’s self-identity and ability to reflect. When clinicians function as a rigid container, they ignore the content projected by the individual inhibiting its penetration and negatively affecting the individual’s self-identity and ability to reflect. It is as if the container refuses to react to what is being projected into it. When clinicians function as a flexible container, the contained enters the container and affects it. The container, in turn, shapes the contained. This flexible container–contained relationship continuously develops allowing growth.
The Current Study
Individuals struggling with cancer are isolated due to their low immune levels and are ego-depleted due to their complicated, emotionally strong, experience of the cancer. Narratives of terminally ill young adults who are hospitalized for long periods are underrepresented. This study seeks to explore Dan’s nonheroic cancer narrative through the cancer trajectory. As the illness progressed, Dan stressed different losses, shifting between the subjective lens (psychology) and the societal lens (sociology and medicine). Dan adopted coping mechanisms to accommodate his grief and his redefined identity. The research questions are as follows: What was the role of the cancer’s progress in Dan’s self-identity? What was the role of the mode of the container–contained relationships in Dan’s self-identity and societal identity? How did Dan cope with his anticipated death?
Methods
Ethics
Following institutional review board (#099), Dan signed a written informed consent regarding participation and publication. I assured Dan that his participation would not influence his treatments and that he could stop any interview at any point he chooses.
Study Procedures
Dan contacted me asking to participate in a study in order to improve the experience of others. Five 3-hour long interviews were conducted near the hospital. Intervals between interviews were between 6 and 8 weeks. The narrative is Dan’s perception rather than “real” things that happened during his hospitalization (Josselson, 2013). Between interviews, I maintained phone contact. For the sake of transparency and fairness, I briefly shared my health history with Dan and allowed him to ask me questions about it. I presented the methodology of the study and thanked Dan for his willingness to contribute to our understanding of his experience.
Narrative interviews call for one general open question (Josselson, 2013). The narrative question was as follows: “Please tell me, how did you arrive at the hospital and what did you experience there?” Dan was the expert in his own experience and from then on led the interview (Josselson, 2013). The interviews were audio-taped, transcribed verbatim, and translated into English. To allow Dan to express himself freely and avoid underplaying or overemphasizing of his experience, I intended to create a pleasant atmosphere. I actively listened making no attempt to comment, ask, or to judge and intended to deliver messages of comfort despite the emotional difficulty in containing the interviews (Hunt, 2009).
Research Quality Criteria
As with all narratives, Dan’s narrative was anchored within three contexts that shaped his narrative: the broad, the micro, and the immediate. The broad context of the narrative was the Israeli universal health-care system which was ranked fifth for efficiency among 51 countries but operates under stress and austerity (Bloomberg, 2014; Segel, 2009; Sim, 2015). There is an immense difficulty to balance needs with resources, a persisting shortage in physicians and a decreasing rate of beds per population (Crisp & Chen, 2014).
The microcontext was Dan’s phase of life and career cycle as a highly respected professional with aspirations and life plans. Finally, the immediate context may have also affected the narrative: The way I defined the study, my academic identity as an audience and my own health history (Josselson, 2013). Dan’s knowledge of our shared near-death experience and similar long hospitalizations may have allowed a single planned interview to develop into five interviews and enabled Dan who socially retracted, to let me into his inner world.
Data Analysis
Data were analyzed by the narrative method based on the perception that narratives are a main cognitive scheme in human development and attribute meaning as a basis for interaction (Gergen & Gergen, 1988; Polkinghorne, 2014; Spector-Mersel, 2011). The analysis was guided by the holistic principle that views narratives as whole experiences whose parts are related to each other (Clandinin, 2006).
The data-driven analysis is based on four distinct analytical steps (Spector-Mersel, 2014). In the first step, I read and reread the five transcribed interviews as a whole unit and identified initial themes. I noted original words, tone, and body language. In the second step, I used six selection mechanisms that describe what the participant unconsciously chose to tell and what he chose not to tell to analyze each interview (Spector-Mersel, 2011). In the third step, I identified the end point of the interviews, a focal point that emerged from the analysis using the selection mechanisms. In the fourth step, I analyzed the form of the narrative and the way the story was told (Thomas, 2010).
The following selection mechanisms were used to tap into the essence of the narrative (Spector-Mersel, 2011): inclusion—relating to facts, reported experiences, and common motives among them (i.e., everything that had happened from the appearance of symptoms); sharpening—relating to events the individual highlighted (i.e., the loss of privacy); omission—relating to events the individual viewed as irrelevant to the desired end points (i.e., the content of visits with his wife); silencing—relating to events that the individual perceived as conflicting with the desired end point (i.e., the effect of the hospitalization on his relationship with his wife); flattening—relating to the minimization of events the individual perceived as unimportant (i.e., his response to the doctor’s error which paralyzed him); and last, attribution of appropriate meaning—relating to meaning Dan attributed to events he found to accord with the end points, although they may not necessarily have fit their original meaning (i.e., clinicians’ conduct toward him resulting in a deeper loss of societal-identity).
Findings: Main Themes in the Cancer Trajectory
Each interview focused on a different interpretation of Dan’s reality. The end point was Dan’s ability, despite all his losses and grief, to extend his capabilities and crystallize his self-identity (Doka, 2002; Doka & Morgan, 1993).
First Interview: “I Want to Shrink in the Aisles”—Grief Around Loss of Self-Identity
Dan was in the chronic phase of illness, he knew the cancer was back for good (Doka & Davidson, 2014). He lost functionality of his legs. He relinquished employment and social functions. Cancer was an intruder that endangered Dan’s existence and exposed his vulnerability Dan recognized the diagnosis of cancer as a “marker event,” an identifiable starting point for a transition that he described early in the interview. One day my right leg froze. Since I had pneumonia, I took a lot of steroids and the doctor thought it was a side effect of the steroids. Then I felt numbness in my leg again while taking a hot shower and I lost my ability to walk. A neurologist diagnosed a tumor on the spinal cord between D6 and D7. The doctor decided to operate so that an initial response to the malignant tumor could be obtained. After the surgery he said, “The tumor is not malignant, we cleared the place and maybe the story will end here.” I had a follow-up MRI every six months. I was just fine. I walked using a walker and then a cane. I went on with my normal life. I took lots of pain killers and behaved as usual at home with the children. Two years later I had back pain and difficulty walking, the MRI showed the tumor had doubled in size and an urgent operation was again needed. I always feel that I am interrupting. I want to shrink in the aisles and not interfere with the wheel chair. … [silence] … I got old … Sometimes I spill food on my shirt … I think about things that 90-year-old men think about, not 32 year old men. I’m dreaming that I’m walking, not that I’m in a wheelchair [Silence]. She will wipe me a hundred times a day but will not give me another shower. Even if I sweat all night, in the morning there will be no shower! Like everyone who comes here, at the beginning I thought that I was the center of the world. You discover very quickly that everything is evaporating, everything is calculated: How many showers you have, how much hydrotherapy you get, everything is technical, although these calculations are critical to our quality of life and to helping us feel like decent human beings.
Second Interview: “Look What’s Become of Me”—Grief Around Loss of Societal Identity
The question “Who am I?” required Dan to consider others in his life along with the social environment and his roles before he redefined himself (Whittemore & Dixon, 2008). Dan felt less like a partner and presented his wife as also experiencing grief due to both present losses and projected future losses (Doka, 1993, 2006): My wife married a handsome, healthy, smart, excellent bread-winner, with a promising future … [Silence]. Look what’s become of me … [Silence]. All my energy is shrinking. Everything becomes marginal. Everything is up in the air … I think about it all the time. … [Silence]. Everyone is fussing with me but my wife is falling apart on her own with the two children. My wife yelled at my mother, “Do you know what it means not to have sex for four months?” My heart was torn to see the despair, for her to cry out about our most intimate thing in public. It is very hard for me. My daughter, is a toddler … She forgot me … I would take care of her, pick her up from the nursery, take care of her at night … every night … we would play, pick a book to read … For her, Daddy is not there for her … I’m on Skype, she kisses the screen … I am a screen dad now … [tears in his eyes … long silence]. When they visit, my daughter wants to climb on the wheelchair but she must not, because she moves the bypass tube to the kidney, which causes inflammation and requires a cocktail of four antibiotics … What should we do? Not bring the kids to visit? They hardly come as it is. Everything here is filled with germs, so we’ll hold them in our arms … How long can you hold a child in your arms? People say slogans like “take it one day at a time”—these are empty, useless! [Silence] . . . Until I reached rehabilitation I did not have myself. The memories from the first hospitalizations are just a few, but when I stop and try to remember I am able to. Here I have time, it’s different, it’s strange. They keep changing your roommates. He likes air-conditioning—you do not; he’s a real nerd—you’re not; he’s noisy—you’re quiet. All the time, you have to re-adjust yourself to others. Some patients sleep with their partners. I don’t … [Quiet]. You have no space for anything, not even for your basic equipment and you’re stuck with someone. At night when you are feverish, you either interrupt others or you are disturbed, you wake up at night with agonizing pain and wake-up everyone else, including family members who sleep with them. Socially, I made a decision to be secluded. I do not know why, maybe because I’m isolated from myself … maybe because it allows me to pretend I’m not handicapped. Every evening someone visits me. People are busy, things are compartmentalized, they are with their own life issues. As a result, my experience is one of loneliness. It breaks me … They say “ventilate,” “share” I say, on the contrary! … Do not explain, separate, don’t share … people are not evil or anti-social, but I am so alone in the experience of my illness that I prefer to remain silent and be empathetic towards them. I pretend that they do understand me … so that they will continue to come. I prefer to be a shoulder for others than to educate them about how they cannot fathom what I am going through! The experience that surrounds me sharpens the boundaries of my communication with the world. I did not get attached to anyone here, only to one person with an illness similar to mine. I have a hidden hatred for those who can move their legs … You call those who can move “fake” and dream of being fake just like them … [Silence].
Third Interview: “It’s Human Action Not Human Error”—A Tragedy Enfolded Into a Tragedy
Dan’s complex surgery was successful, but the gains were lost during the first night. Dan coped with the stress of the illness as his functioning declined due to an error a resident made after his complex surgery: They made a mistake with me at a critical point. I feel helpless, angry, unfortunate. I know the difference between the humanity of error, between fragility, vulnerability, and the potential harm of human actions. It’s human action not human error that erased the life I could have had. The operation was successful in terms of movement in the limbs and the nervous system. What caused the whole mess was a hemorrhage that erupted about 30 hours after the surgery, a narrow blood vessel burst and dripped. At 12:30 at night I complained of enormous pain in my arm. The only doctor on duty did not even read my chart and responded to me saying: “You don’t feel your arm because of the pain from the surgery.” I want to tell him: “You studied anatomy for God’s sake; you know that the operation was in D7, D6, in the chest, not in the limbs.” It should have been a signal to you. It is a mistake caused by fatigue, perhaps from lack of listening. It cannot be due to lack of intelligence because you were accepted into medical school with a score of probably over 750 out of 800, but you ignored my signal … You were wrong!!!! I want to yell at him … Maybe you did not fail the anatomy test, but you failed to read messages from me!! And here I lose it because … it’s just unforgivable … my tumor has increased … metastasized … By the morning, I was completely paralyzed. My tumor is called astrocytoma, a star shape, which is attached to the spinal cord from within the spine. The first and second biopsies were pathological, and there was a formal answer to a polycystic astrocytoma on scale 1–4. Doctors speak on a 1 to 4 range. A grade of 1 and 2 means it is benign. A grade of 3 and 4 means it is malignant. The growth of my tumor is not related to its malignancy; it’s the combination of my tumor with the hemorrhage that makes it so bad. Those whose spinal cord was untouched have better chances of recovery. Surgeons are still reluctant to touch it, it’s just a catastrophe. In retrospect, I would not have the surgery. Some doctors made every effort not to make eye contact with me; for that reason they chose to meet me only in the formal arena. The corridor creates an informal environment to which the doctor is not obligated. On the other hand, there will be a doctor who will make eye contact and risk me asking him a question. He will stop for a second, answer or not answer, say “there is no time at the moment” … but he will not run away and come back … or he will initiate by stopping and asking me how I am doing.
Fourth Interview: “They Castrate You”—Assimilating the Role of the Ill and Disenfranchised Grief
Dan reconnects to a stable new state which constitutes his structural rights and obligations in relation to his social role as a patient. Knowing that his cancer is terminal and that the hospitalization will lengthen until his death, Dan needs to develop new social–political skills: They are nice until you want something a little different. If you ask the nurses for something different, it makes them mad. They express their frustration in front of you, right to your face, at having to change your diaper yet again. From the start, you learn that the nurses are your hands and feet; for example—opening the curtain, that’s something you cannot do on your own. The curtain will not move if I look at it. You suddenly feel uncomfortable, afraid she’ll get mad when she changes your diaper. You try to neutralize the atmosphere, so that everything will be calm around you, and will not make her nervous. You lower your head … you’re on a thin line, you need a lot of stuff from the nurses … If you fear that you will get them irritated, that they will choke you at night, you are not in good shape. They take away your sense of responsibility here, they castrate you, they undress you, they dress you, they wash you … You sit and wait for someone to speak for you. They don’t even ask you anything, they just announce: “Let’s go down to the shower.” The nurses shout to each other in the corridor, “Bring me a diaper … Do not forget to soap him.” They just forget your need for privacy. You lose your privacy from day one and it hurts very much. Before I was hospitalized, I was unable to go to the bathroom if someone even looked at me. Today I’m in front of the entire medical staff when they push their fingers inside me. I want to stand up for my privacy because I deserve it, but I can’t. Privacy is a right but it’s completely wiped out and nurses’ behavior is silenced. Some dynamics include a nurse when you are naked, they need to diaper you, wipe you. It comes naturally to them. Medical authority continues to fade. Every time it’s necessary to get my informed consent, it signals that their procedure is not trivial, and whenever the medical protocol requires my signature, the medical authority is further eroded, because if they were confident in the results of their actions as doctors, they would have the authority, not me. If he cannot perform without my signature, he has no authority. So, you see? Whole communities of doctors depend on our power.
Fifth Interview: “In the Cafeteria You Eat the Cancerous Food and Down in the Basement You Get the Radiation Treatments”—Solid Mental Health in Terminal Illness
Dan avoided talking about his approaching death, about his physical challenges, or the immense pain he was suffering. As a young male, he escaped to intellectualization and focused on his life philosophy and on medicine (Doka & Martin, 2014). His unique personality traits made him more resistant to the pressures he encountered and enabled better coping. He remained mentally solid with a “sense of identity coherence” despite the challenges he was facing (Antonovsky, 1987): As we know more, there is a phenomenally growing number of people suffering from cancer. Our ecological behavior is the history of our “just” society. Our fruits are cultivated with chemicals, we eat canned food, the cellular phone is on 24/7, the laptops reduce our sperm count … The obsessive use of painkillers causes a low threshold to pain … [Silence]. On one hand, life expectancy increases and on the other hand, fragility increases. More and more frequently, the ordinary man stops taking medicine as a positive act because, he too, sees the harm and distrusts the medicine. The public is signaling to doctors that medicine is in a gray area. Something is deficient in the general context of medical management. There is a lack of effectiveness, recovery, if feasible, is only outside the hospital. It is clear that the function of the hospital is to stabilize you and discharge you to the rehabilitation facility. If you are in critical condition in intensive care after stabilization, you are sent to the ward. There is a real loss of brotherhood. The ordinary man expresses protest here, anger, disappointment and despair with medicine.
After the Fifth Interview: Epilogue
Dan often had high fever requiring four rounds of cocktails of antibiotics. His immune system weakened, and his pressure sores worsened. He refused to meet me. We conducted short phone conversations to make sure he knew I was thinking of him and hoping for a miracle. The rounds of fever continued. The cancer was spreading fast. Finally, he suffered systemic collapse. Dan died at 33 years, about a year after the beginning of the interviews. A month later I received a letter from Dan. It was a poem he wrote me that beautifully and gently expressed how the interviews made him feel normal in his hospital routine. I was speechless, left in awe at the strength of his humanity. It was Dan’s gesture of saying goodbye. Figure 1 demonstrates the trajectory of Dan’s cancer and self-identity.

Trajectory of interviewee’s cancer and self-identity.
Discussion
This nonheroic cancer narrative illustrates physical deterioration, grief, disenfranchised grief, and growth. Dan’s life before the first round of cancer was not a struggle and since his life was short, and unfulfilled, cancer indeed disrupted his life (Sinding & Wiernikowski, 2008). Dan’s cancer narrative is chaotic, with all events contingent upon a sense of loss of control revealing vulnerability, helplessness, disintegration, diminished identity, social retraction, and futility (Hughes, Closs, & Clark, 2009).
The Cancer Trajectory and the Changes in Self and Societal Identities
In contrast to typical linear processes in cancer which comprise phases of loss, new beginnings, and letting go, this temporal narrative regressed until death lacking the “letting go” phase. There was also no attribution of positive meaning to the cancer (Moye et al., 2018). Dan’s previous identities as a spouse, father, professional, and citizen all shrank resulting in a sense of loss in his wholeness (Toombs, 1995); in his sense of self (Kralik, Visentin, & Van Loon, 2006); in his social identity (i.e., work and community); and in his self-worth resulting in a sense of powerlessness (Aujoulat, Luminet, & Deccache, 2007). It is possible that some of Dan’s grief was converted into symptoms of headaches or bodily pains (Doka, 2006). He was preoccupied with his health and may have expressed grief as a reaction to the many losses he was experiencing as his body deteriorated. He grieved his loss of health, functionality, independence, mobility, autonomy, and future plans (Doka, 2006).
Due to the uncertainty of cancer, the definition of Dan’s self-identity was continuously redefined (Mayan, Morse, & Eldershaw, 2006). His liminal identity positioned Dan between the previous way of structuring his identity and a new way of structuring his identity, as shaped by the social role that cancer establishes. When Dan shared that he feels like an old man and identified with issues he perceives as engaging old people, it reflected our societal, cultural, and institutional notions of loss due to cancer.
The progress of the illness caused physical issues and psychological issues that prevented Dan from expressing himself (Holland et al., 2010). As Dan’s cancer progressed, self-estrangement, a distinct psychological state of alienation, was evident. In self-estrangement, one’s loss of objectivity and “realness” is manifested by one’s feeling that he has no meaning and, therefore, loses his sense of self and feels detached from his former self and from society as a whole (Blackie, Cozzolino, & Sedikides, 2016). As the disease progressed, marginal daily activities taken for granted before the cancer (i.e., bodily functions and consuming liquids) became central in Dan’s life (Makary & Daniel, 2016).
Dan developed skills that are relevant on a day-to-day basis. On one hand, he was afraid to “annoy” nurses with requests, and on the other hand, he needed their assistance. The continuous role of staff authority creates avoidance and fear among ill people at the hospital who do not want to be seen as “troublemakers” (Goffman, 1963). Dan’s affective responses such as anger, anxiety, and sadness may have been displaced and expressed through his anger toward the nurses, especially since he experienced them as uncaring (Doka, 2006). The dominance of the biological model strengthens Dan’s passive state. Despite the aspiration for patient involvement, paternalistic attitudes are strong (Karazivan et al., 2015). The medical verdict of cancer causes Dan to further lose his previous established place in society and his self-identity. Dan confronted his many losses (Cheng, Lo, Chan, Kwan, & Woo, 2010).
As his body was deteriorating, Dan’s self-identity, cognition, and emotions crystallized, with heightened awareness of his thoughts, values, and preferences forming inner strength despite his young age (Hughes et al., 2009). Findings contrast previous studies that linked triumph and growth to survivorship and to social support (Nenova, DuHamel, Zemon, Rini, & Redd, 2013; Scrignaro, Barni, & Magrin, 2011). Dan developed inner strength while hospitalized, socially retracted, and anticipating his death.
Container–Contained Mode in the Caring Relationship
Content analysis suggests lack of emotional facilitation by clinicians, which may have increased Dan’s suffering. Borrowing from Bion (1970), clinicians are expected to be sensitive to the impact of illness on the anxiety of the ill and its effect on one’s perception of the illness process in order to contain emotions and alleviate one’s suffering. The dominant container–contained mode in the caring relationships, as reflected from Dan’s experience, fits a rigid container that failed to alleviate Dan’s anxiety or facilitate his growth. Dan experienced his interactions with clinicians as not acknowledging his grief, which may have produced disenfranchised grief (Bion, 1970; Doka, 2002, 2006, 2016; Doka & Davidson, 2014). If you ask the nurses for something different, it makes them mad. They express their frustration in front of you, right to your face … You suddenly feel uncomfortable, you’re afraid she’ll get mad when she changes your diaper … there’s no one to talk to.
The meaning that Dan attributed to his experience at the hospital may reflect the society in which we operate: What the ill individual must say? how the individual is expected to act? and what role the ill individual must play. Dan’s experiences suggest that clinicians failed to enable him to be occupied with tasks such as acknowledging his loss and expressing latent emotions associated with it (Worden, 2018). Neither did clinicians, based on his experience, apply restoration-oriented processes to enable Dan to redefine his evolving new identity despite the loss (Doka, 1996, 1997).
We learn from Dan’s experience that instead of clinicians serving as the container in the relationship, it was Dan who contained the clinician’s frustration: “You try to neutralize the atmosphere, so that everything will be calm around you, and will not make her nervous.” These findings echo previous findings on responses of clinicians to mental distress of cancer sufferers and may reflect a lack of protocols on how to respond to hospitalized people, limited psychosocial resources, as well as a lack of time (Granek, Nakash, Ben-David, Shapira, & Ariad, 2018). Last, Dan perceived his interactions with clinicians as decreasing his self-confidence (Manners, 2017).
Emotional Regulation and Coping Mechanisms
At each phase of the cancer trajectory, prediagnostic, acute phase, chronic phase, recovery, and terminal phase individuals have variegated tasks and experience grief (Doka & Davidson, 2014). In that process, cancer sufferers are likely to experience and regulate a range of emotional responses (Brandão, Tavares, Schulz, & Matos, 2016; Kangas & Gross, 2017). Emotional regulation is defined as “the processes by which individuals influence which emotions they have, when they have them, and how they experience and express them” (Gross, 1998, p. 275). Emotional regulation in cancer includes five strategies: cognitive change (prediagnostic anxiety), situation selection (approaching treatment), situation modification (modifying the external situation by preserving routine), attentional deployment (preoccupation with distractions), and response modulation (suppressing emotional expression).
Dan selected different strategies to regulate his emotions across phases of his cancer trajectory. In the first round of cancer, he used a problem-solving approach and received treatments (Doka & Martin, 2014). He also used a situation modification strategy preserving his work and life routine. In the second round of cancer, he used the same problem-solving approach but regretted it as the doctor’s lack of listening left him paralyzed. Throughout the lengthy hospitalization as his body deteriorated, he used response modulation suppressing fear and other emotional expression. He expressed grief through cognition and intellectualization rather than through feelings (Doka & Martin, 2014).
Like other young adults with cancer, Dan perceived attempts of friends and loved ones to socially support him as ineffective (Iannarino, Scott, & Shaunfield, 2017). Dan recognized that no one was really able to understand his experience and therefore, similar to other cancer sufferers, he wore a carnival mask as a defense mechanism to hide difficulties underlying his cancer experience (Bakhtin, 1984; Staneva et al., 2018; Yaskowich & Stam, 2003). As part of the dual process of grief, to restore position, Dan avoided sharing thoughts and feelings with his friends making them believe that for him too, business was as usual (Stroebe & Schut, 2010).
Two months before his approaching death, in the last interview, Dan focused on medicine, society, and philosophy. He escaped talking with me about the cancer, his approaching death, the physical challenges he encountered, and the immense pain he was experiencing. His escape to philosophical thoughts helped Dan view the world as “logical” in terms of cognitive, instrumental, and emotional elements in his narrative (Doka & Martin, 2014). Dan created a general perception of the world as understandable, manageable, and meaningful, thereby creating a narrative coherence.
Building Resilience and Experiencing Growth While Anticipating Death
Dan’s narrative coherence between redefined identities may have provided him with a sense of control and preserved his solid mental health, resonating with the salutogenic approach regarding one’s coping resources (Antonovsky, 1987). Dan also highlighted the process of reflection regarding his gradual loss of all his previous social roles and identities. It is possible that reflection allowed Dan to extend his cognitive and emotional capabilities and experience growth: “Until my hospitalization at the rehabilitation ward I did not have time or space to reflect on my experience.” Reflection enabled fostering a postdiagnosis perspective and searching a readjusted identity (Saunders et al., 2018). Reflection and the interviews enabled the dual grief process: an oscillation between loss-oriented processes and self-restoration processes (Stroebe & Schut, 2010).
Dan needed to shape a more or less coherent theme among his life events and his cancer to make up his narrative (Yoshida, 1993). Through reflection, Dan shifted among identities shaping his new coherent self-identity and crystallizing his values, priorities, and views regarding our society. Through reflection, Dan experienced the development of the distinct, unique, strong characteristics that one may feel through his narrative. Even while being fully aware of his dependence on clinicians, he chose to realize his autonomy over his body and to resist signing informed consent forms for procedures that he perceived as not imperative. He was loyal to himself despite his loss, disability, and liminality.
Dan’s strong sense of coherence among identities allowed him to cope well even when facing the most threatening stress (Doka, 2002). Dan’s previous identity was that of a young successful thinker, who was sharing his experience. The second identity is that of an individual suffering from cancer, lacking autonomy, dependent on grumpy nurses, and feeling like an old man. The third identity is that of an individual who, despite being a part of a collective of individuals with cancer, viewed himself as uniquely different from other individuals. His liminal identity allowed Dan to move authentically from the subjective to the objective. Dan had the discipline to cope; he believed he understood the challenge and that he had inner resources to cope with the situation and manage it. Dan’s self-efficacy and his acquired resourcefulness reflect components of resilience in his coping mechanisms.
The Form of the Narrative
Human error is the third cause of death in the United States (Makary & Daniel, 2016). Dan distinguished between human error and unforgivable mistakes in medicine. Dan related to the supremacy of the biomedical model as leading to arrogance of the doctor who belittled his complaint presuming to know the source of his pain. Even his rage toward the doctor whose failure to listen to his complaint caused his paralysis, took up only 7% of the volume of the interview text illustrating again, the use of cognition rather than of emotions as a mechanism to cope with grief (Doka & Martin, 2014).
The Role of the Research
The interviews may have had a therapeutic value for Dan serving as a flexible container. The interviews enabled Dan to introduce himself to the world as a thoughtful, creative individual, despite his terminal cancer. This may explain why Dan was adamant to participate in this study. Dan wanted to improve future hospitalization experiences for others but at the same time preserved his previous self-identity as a thinker through the interviews. The interviews allowed the processing of loss and the restoration of his previous identity (Stroebe & Schut, 2010). The reflection and dialogue among the different identities may have been possible due to the physical distance between the location of the interviews and his hospital bed providing some perspective into a window of reflection. Thus, even during the interviews Dan was liminal—belonging to the collective of cancer sufferers, but having the interviews outside the ward itself. It is possible that had we conducted our interviews by his hospital bed, Dan would not have expressed his views.
Practice Implications
Improving the cancer experience for hospitalized individuals physicians, nurses, psychologists, and social workers may gain insights from this cancer-narrative and adjust therapeutic methods to better meet needs and emotional responses of individuals with cancer. Based on Dan’s experience, five processes can improve long hospitalization experiences of cancer sufferers.
First, this study calls to promote clinicians’ ability to acknowledge grief through cancer illness and contain individuals in lengthy hospitalizations. Second, facilitation of reflection is essential for coherence among self-identities and inner strength. To facilitate reflection, hospitalized individuals may be encouraged to write a diary focusing on their biographical works. Also, establishing support groups for individuals with similar needs may create a more positive cancer experience during long hospitalizations.
Third, it is necessary to raise clinicians’ awareness of the need for respectful communication that goes beyond the clinical responsibility to the responsibility for the self-value of hospitalized people and their well-being (Gabay, 2015, 2016, 2019; Gabay et al., 2017 ). Fourth, clinicians may empower individuals rather than trampled upon them. Fifth, in lengthy hospitalizations, individuals may be offered to enjoy recreational activities. Individuals who are able to contribute to society from their hospital bed by virtual volunteering in community projects (i.e., chats or other computer projects) should be allowed and encouraged to do so.
Conclusion
The close connection of cancer with death and the lack of accurate scientific clarification as to what actually causes it, stresses cancer as uncertain, unpredictable, and unjust. Cancer is a threat to one’s belief in the prosperity of the righteous and to human existence. Dan’s tragic narrative demonstrates human triumph in an existential crisis: The extinction of physiology with simultaneous growth in cognition and emotion leading to a crystalized self-identity and feeling whole.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
