INTRODUCTION
Throughout their lives, people are invariably confronted with unexpected life events. These encounters can be positive or negative, but seriously negative experiences often affect people most profoundly. Life events with a profound impact are known to raise questions about life itself and can be difficult to incorporate into one's life. These experiences are called experiences of contingency. Contingency refers to the idea that everything—including one's own life—could have been different, and compared to one's plans and expectations could develop otherwise. In other words, the occurrence of the life event is a possibility, not a necessity (Liebau & Zirfas, Reference Liebau and Zirfas2014; Makropoulos, Reference Makropoulos2004; Scherer-Rath et al., Reference Scherer-Rath, van den Brand and van Straten2012). Although in principle all life events can be considered as contingent events, contingency in practice will be experienced when an event is significant for the person's life as a whole, when it adversely affects personal life goals, and when the event cannot naturally be integrated into one's life (Dalferth & Stoellger, Reference Dalferth, Stoellger, Dalfert and Stoellger2007). A diagnosis of incurable cancer is often a tremendous shock and difficult to interpret in the context of one's personal life narrative (Benzein et al., Reference Benzein, Norberg and Saveman2001; Ganzevoort, Reference Ganzevoort and Miller-McLemore2012; Kendall & Murray, Reference Kendall and Murray2005; Sarenmalm et al., Reference Sarenmalm, Thorén-Jönsson and Gaston-Johansson2009). It may evoke such existential questions as “Why me?” “Why now?” “What will my future look like?” and “What is the value of life?” (Fife, Reference Fife2002; Houtepen & Hendrikx, Reference Houtepen and Hendrikx2003).
In traditional communities of the 19th century, actions and choices were constrained because each individual was anchored within the binding structure of social, cultural, and political norms and values, so that the integration of adverse events was taken care of within the community (Keupp et al., Reference Keupp, Ahbe and Gmür2006). In our current and more liquid modern times, the identity of people is not so clearly determined by these grounding structures (Bauman, Reference Bauman2013; Taylor, Reference Taylor2007). People define themselves less in social terms and increasingly construct and justify their lives in terms of narratives that support self-control (Ganzevoort & Bouwer, Reference Ganzevoort, Bouwer, Ziebertz and Schweitzer2007; Liebau & Zirfas, Reference Liebau and Zirfas2014). This allows them to create their own structure of plausibility from which they interpret daily life. The creation of such a structure requires the making of a story (Ricoeur, Reference Ricoeur1986; Straub, Reference Straub and Straub2005). A story creates a context in which events of the past, present, and future are fused into a plausible whole that serves the personal goals that one pursues. Thus, the activity of linking these events by describing what has happened enables people to understand the meaning of these events (Olthof & Vermetten, Reference Olthof and Vermetten1984). Construction of life narratives is an ongoing process that locates the narrator in the middle of his story, thereby maintaining a continuous process of self-interpretation (Blitz, Reference Blitz2008; Murray, Reference Murray, Murray and Chamberlain1999). The need for these explanatory narratives is even stronger when specific life events force the development of a whole new storyline. Life crises can mark the start of reflection and evaluation of questions about who we are and where we go in life (Baart, Reference Baart2002; Blitz, Reference Blitz2008).
According to the German philosopher Kurt Wuchterl, the contingency of the world is not always acknowledged. People are inclined to develop a theoretical explanation for every event, assuming that everything can and should be explained either in terms of human reason or the laws of nature (Richter, Reference Richter1983; Wuchterl, Reference Wuchterl2011). In explaining how the world works, people have often ignored or denied the contingency of events, even though contingency is inherent to the world itself (Wuchterl, Reference Wuchterl2011). Repudiating contingency is mostly done on the argument of an all-encompassing reason, by the laws of nature, or the will of a higher power, in which reference to unexpectedness—as is inherent in contingent events—is completely removed.
This notion of contingency as described by Wuchterl is not a general psychological notion, although it touches upon different concepts within (health) psychology. Much research has been carried out in the field of coping, describing how people deal with unexpected life events (Park & Folkman, Reference Park and Folkman1997; Pearlin & Schooler, Reference Pearlin and Schooler1978; Lazarus & Folkman, Reference Lazarus and Folkman1984; Bury, Reference Bury1982; Wolin, Reference Wolin and Crenshaw2015; Cheng et al., Reference Cheng, Lau and Chan2014). Pargament and others have distinguished a specific form of coping—religious coping—which may positively or negatively contribute to dealing with severe life events (Pargament et al., Reference Pargament, Ishler and Dubow1994; Reference Pargament, Smith and Koenig1998; Reference Pargament, Koenig and Perez2000; van Uden et al., Reference van Uden, Pieper, Van Eersel and Westerink2013). In addition, resilience research seeks to answer the question of why some people cope more effectively than others with certain situations (Luthar, Reference Luthar, Cicchetti and Cohen2006; Wolin, Reference Wolin and Crenshaw2015). The common denominators in all these approaches are that they are based on stress theory and that they deal with mechanisms of appraisal and adaptive behavior, primarily focusing on how people function. Contingency theory, however, is a specific religious-philosophical approach that deals with the content of how people evaluate situations in relation to their worldview. This evaluation is crucial in the understanding of how people deal with critical situations. Contingency theory can be a valuable addition to the concepts and approaches within (health) psychology since it adds notions of purpose and intent to the functionalist approach of coping-based theories.
Not every unexpected event can be valued as being contingent from a religious-philosophical perspective. It has to meet certain criteria. According to Wuchterl, a personal issue is only religious-philosophical contingent when it (1) is judged within one's belief system as ontologically contingent, that is, not necessary to happen nor impossible; (2) resists every attempt by human actions to eliminate this nonnecessity; (3) is accompanied by an existential interest; and (4) triggers a reflexive impulse to argumentatively deal with the contingent phenomenon (Wuchterl, Reference Wuchterl2011).
He describes two ways in which people can relate to contingency, that is, narratively integrating these experiences into one's story of life. He describes these ways as “acknowledging” and “encounter with the Other.” People who acknowledge that the world itself is ontologically contingent recognize the fact that unexpected things can happen that cannot always be explained. Questions remain open, and there is space to relate to something beyond our tangible world. An “encounter with the Other” refers to an encounter with something that is beyond human understanding and intelligibility. This possibility is called a “contingency encounter,” although that which is encountered is the “Total Other.” This encounter creates, as it were, the openness for new possibilities and opportunities. One is open to passively receive things that might happen or insights that might arise from this “new reality.” The different ways of relating to contingency as distinguished by Wuchterl have not yet been examined in clinical practice. Here we aim to examine if we can trace these theoretical distinctions—denial of contingency, accepting contingency, encounter with the Other— empirically in the experiences of patients with advanced cancer.
METHODS
To investigate differences in how patients relate to contingency in clinical practice, we analyzed interviews that spiritual counselors held with advanced cancer patients about their experiences of being ill and the existential meaning they attributed to it. In order to trace Wuchterl's conceptual distinction, we undertook our empirical research in two phases: development and validation.
Development Phase
As a conceptual starting point, we used Wuchterl's trichotomy (denying, accepting, encounter), where after 23 interviews with advanced cancer patients had been analyzed. The interviews were conducted by spiritual counselors using a semistructured interview method exploring the patients' experiences with cancer, as described earlier (Kruizinga et al., Reference Kruizinga, Helmich and Schilderman2016). The constant comparative method was employed with a directed content analysis approach, while our analyses started with a theory as guidance for the initial codes (Hsieh & Shannon, Reference Hsieh and Shannon2005) and making use of the Atlas.ti coding program (Friese, Reference Friese2014). We started with the formation of categories, subsequently establishing boundaries, and ended with summarizing the content of each category in a one-page document (Boeije, Reference Boeije2002; Tesch, Reference Tesch1990). Based on these analyses, we came to distinguish four modes of relating to contingency: denying, acknowledging, accepting, and receiving. To improve the quality of the code descriptions, we organized a peer group meeting with eight researchers from Radboud University–Nijmegen. These included two professors of pastoral theology and religious studies and six doctoral students working on different projects within practical and empirical religious studies. Using their feedback, we improved the code descriptions and defined more strict inclusion and exclusion criteria.
Context of the Study
The interviews used for validation of our model were conducted by seven spiritual counselors working in different hospitals. Four of them had Roman Catholic backgrounds, two were Humanists, and one Protestant. All counselors had more than seven years experience working in a hospital setting. Their experiences with the interview method and the study protocol of a randomized controlled trial (RCT) have been described elsewhere (Kruizinga et al., Reference Kruizinga, Scherer-Rath and Schilderman2013; Reference Kruizinga, Helmich and Schilderman2016). In short, the spiritual counselor asks the patient to draw a lifeline from birth until the present, with highs and lows indicating important life events. The patient chooses three important life events, which are discussed in more detail, and their expectations for the future and life goals are discussed. The spiritual counselors were trained by our research team to examine the experiences of contingency caused by these life events. In the present analysis, we examined one of the three life events identified by all patients, namely, the life event of having incurable cancer.
Validation Phase
In the second phase, we used 45 interviews, originating from an RCT that evaluated an assisted structured reflection on life events and ultimate life goals to improve quality of life. To test the final code descriptions, an interrater reliability test (IRR) was performed with three coders (RK, IH, MSR) using fragments from eight RCT interviews. The other interviews (n = 37) were coded by one researcher (RK) for reasons of efficiency, but in case of doubt (n = 9) the interview fragments were coded and discussed by all three researchers (RK, IH, MSR) until consensus was reached.
Design of the Study
Patients were recruited from seven different hospitals: two academic hospitals, one categorical hospital, and four local hospitals. The Medical Ethics Review Committee of the Academic Medical Centre–Amsterdam confirmed that the Medical Research Involving Human Subjects Act (WMO) did not apply to our study and therefore an official approval of this study by the committee was not required (Letter June, 27th, 2012). The inclusion criteria for patients were as follows: ≥18 years of age with advanced cancer not amenable to curative treatment and with a life expectancy ≥6 months. Patients with a Karnofsky Performance Status score <60, insufficient command of the Dutch language, and a current psychiatric disease were excluded. Data were collected from July of 2014 until March of 2016. The interviews lasted for from 35 to 144 minutes.
RESULTS
Patient demographics are provided in Table 1. Twenty-one males and 24 females were included. All patients had Dutch nationality, and their mean age was 60. The four codes indicating the four different modes that resulted from our analysis are described below. All quotations are derived from the 45 analyzed interviews that were held as part of an RCT (see Table 2).
Table 1. Patients' demographics
Table 2. Quotes
Development Phase
In our analysis, we focused on the three conceptual distinctions proposed by Wuchterl: denying, accepting, and “encounter with the Other.” In our data, we found a lot of statements that indicated acknowledgment of the contingency of the event, but without full acceptance. These statements did not fit the definition of “denying,” nor that of “acceptance.” Therefore, we defined the additional code of “acknowledging.” Also, for the description of Wuchterl's “encounter,” we found that patients talked more about “receiving” something rather than “encountering” something, so we labeled this mode “receiving.”
Mode 1: Denying
In the analyzed interviews, patients who talked about their experiences such that they were not engaging in an interpretation process were categorized as “denying” the contingency. Most of the time, denial of contingency is seen in that which is absent, for instance, in a lack of existential questions, rather than clear statements of denial. We did find some statements of patients who did not want “it,” or did not want to talk about their cancer, pushed it aside, or emphasized their activeness to live on as they did before (quote 1) (see Table 2). In contingency denial, the patient has not started or has aborted the interpretation process; there is no real confrontation with one's own vulnerability or the limits of one's own abilities (quote 2). Sometimes a definitive explanation of the event is given or the existential meaning of the event is denied, leaving no questions about the event or its cause. This denial is associated with coping, as defined in medical psychology. Coping can be seen as a strategy to restore the balance in life as soon as possible, in order to be functional again and continue with life, thereby avoiding an interpretation crisis (quote 3). The phrases used in the case of contingency denial are often formulated as rationalizations or statements that express the respondent's lack of need to ask questions or need to understand the cause of an event. It most often reveals itself by that which is lacking, when no questions are asked and no process, ultimate meaning, or references to the existential domain are discussed (quote 4). Some patients talk about pure bad luck, but later on also talk about their struggles to incorporate this “bad luck” into their lives. Therefore, statements that mention “chance” or “bad luck” should not automatically be linked to the code of denial. Statements about the existential meaning of this “bad luck” indicate that the interpretation of “bad luck” is the result of a search for a meaningful interpretation and not a definitive answer that immediately halts the interpretation process.
Mode 2: Acknowledging
When contingency is acknowledged, the experience of contingency is “taken seriously,” and it is recognized as an event that has an impact on one's life as a whole (quote 5). No definitive explanation is given for the event, but a process of interpretation has been set in motion, searching for the cause and meaning of the life event. The event raises questions that cannot be answered immediately. Important in the acknowledgment of contingency is seeing the non-necessity and non-impossibility of the situation. It is recognized that it goes beyond one's understanding to grasp the cause of the event, but there is a need to relate to something that lies beyond one's capabilities. Asking questions about the cause of the event (e.g., “Why me?” “Why now?” “Why did this happen?”) is seen to be a key element in this mode of acknowledging (quote 6). Acknowledgment of contingency is only the first step in the narrative interpretation process, an attempt to place the event within one's life story. The experience of contingency is confronted, and the impact and significance of the event for one's life as a whole are recognized. However, the event is not accepted and not yet integrated into one's life story (quote 7). The phrases that are used to describe this can be formulated as verbs relating to how it should be or what they have to do.
Mode 3: Accepting
In the mode of accepting contingency, not only the contingency of a life event is acknowledged, but also the new reality that comes with it is recognized and accepted as a part of the person's life after the event. This acceptance is one step further toward an integration into the personal life story and in the direction of a new reality (quote 8). In this mode, the statements are more passively formulated compared to the previous mode. The struggle to place the event into the whole life story is also part of acceptance (quote 9). Accepting the contingent life event goes one step beyond acknowledging, because the event is now also an integrated part of one's life. Sometimes this is still a struggle, but in some cases new possibilities are seen and discovered. However, this is only the beginning of the learning process; full integration of this new opportunity is only completed in the mode of “receiving.” In accepting, the patients are actively looking for a way in which the event can be integrated into their life. This is often expressed in the form of a process, with the use of verbs, for example, “learning, accepting, seeing.” In this mode, the reinterpretation of the event and the significance for one's own life are clearly stated (quote 10).
Mode 4: Receiving
In contrast to “encounter,” as defined by Wuchterl, we observed an attitude of receiving: that what is received often concerns patients' ultimate life goals. In this mode of relating to contingency, there is full integration of the event into one's life story. The phrases that are used often denote transformation and deriving new insights, influencing the choices made in life. Patients refer to values that have become more important—for example, being more conscious or aware in life, taking more enjoyment from the here and now, having more meaningful relationships. Such phrases are mostly formulated in the past tense (quote 11). Patients in the mode of receiving often talk about insights they have received from relating to the contingency of an event. They also talk about something that transcends our tangible world—for example, “it happens for a reason” or “someone/some power did this.” This transcendence has a broad meaning. It can be something abstract, like “the universe,” “the unknown,” or the “ultimate good,” and some people call it “a higher power/God” (quote 12). In the mode of receiving, “new possibilities” are central, there is space in which to act, and it is preceded by a process of transformation and creation of new insights. There is not only the acknowledging of the world's ontological contingency, but it is a real encounter with “the other side”: that which we cannot know and cannot see (quote 13).
Final Model
If we look at the four modes, their definitions (see Table 3) and their implications for different dimensions of life, we come to a schematic representation (see Figure 1). The red circle at the bottom of the figure represents a contingent life event. A life event can have a situational meaning for the person in the here and now. It can also have a more existential meaning for a person in terms of his/her life as a whole. Sometimes a life event can have a spiritual meaning for a person, regarding a higher reality. At the left, these three dimensions are specified. The first mode—denying—bends to the right because it represents not acknowledging the impact on one's whole life. When an interpretation process is begun, it is the first step toward integration. This is the second mode—acknowledging. The blue arrow symbolizes a process moving toward full acceptance. In the mode of accepting, there is room for reinterpretation of a life event; hence the black arrow. At the end of the model, the mode of receiving is placed in the dimension of a higher reality, discovering the new possibilities and new insights.
Fig. 1. Schematic representation of the four modes.
Table 3. Definitions of the different modes of relating to contingency
Validation Phase
To test the final code descriptions, an IRR was performed and the calculated value of Cohen's kappa was 0.83, which can be interpreted as “very good agreement” (Tinsley & Weiss, Reference Tinsley, Weiss, Tinsley and Weiss2000). Of all the interviews (n = 45) that have been encoded, only two were assigned the code of “denying,” and two were assigned the code of “receiving.” Most (n = 24) were assigned the code of “recognizing,” and many were assigned the code of “accepting” (n = 17). We did not observe major differences between the four different modes and the sociodemographic characteristics (see Table 4).
Table 4. Results of the validation phase
DISCUSSION
Our study is the first to investigate the theoretical distinctions put forward by Wuchterl regarding the experience of contingency in a clinical setting. The described modes of relating to contingency will make it possible to understand the experiences of cancer patients and allow caregivers to better target and shape individual care. Caring for the existential issues of patients is usually referred to as spiritual care. Spirituality can be an important element of the way patients face chronic illness, suffering, and loss. Spiritual care begins by truly listening to patients' hopes, their fears, and their beliefs and to incorporate these beliefs into the therapeutic plan (Puchalski, Reference Puchalski2001). This careful listening is a first step toward understanding and subsequently toward an accurate diagnosis of a patient's ability to relate to contingency. A proper diagnosis is a precondition for good counseling in dealing with a possible interpretation crisis. This is especially important when it comes to a severe interpretation crisis (van Dalen et al., Reference van Dalen, Scherer-Rath and Hermans2012). Unmet spiritual needs can lead to depression and a reduced sense of spiritual meaning and peace (Pearce et al., Reference Pearce, Coan and Herndon II2012). It is important to first recognize spiritual needs and to then understand those spiritual needs in all their forms and appearances. In contrast to Wuchterl, who reserved much space for the description of “denial,” we found indications of this mode of relating to contingency in only two interviews. This discrepancy can have different explanations. First, our study only looked at the life event of having incurable cancer. In other cases, patients might be more inclined to ignore the contingency than in the case of our major event. Second, people who tend to ignore contingency might not be the people who are most likely to participate in studies on talking about their lives (Street et al., Reference Street, Gordon and Ward2005). Therefore, the numbers in our study indicating the four different modes should not be used to draw conclusions about more general circumstances. Future studies in different patient populations and examining other life events could enhance our findings. It should be noted that an interview fragment only represents one particular moment during which the patient reflected on his or her experiences of contingency. Therefore, our findings should not be understood as fixed states, but as modes between which patients can pass back and forth. The different modes may necessitate different approaches to spiritual care. For instance, patients in the mode of denying contingency are more likely to be resistant to the kind of help that focuses on the meaning of a life event in their lives, as they do not recognize this line of thinking. In contrast, patients who are in the mode of receiving are less likely to benefit from help that gently tries to allow the patient to see that the event can have implications for their lives, as the patient has already discovered a new reality and new possibilities resulting from the event. Our finding of four different ways of relating to contingency gives insight into where a patient can be in terms of relating to existential questions and affords an opportunity to understand the questions that may arise in the different modes. However, this is just the first step in understanding the experience of contingency in advanced cancer patients. We do not yet fully understand the relationship between the different modes, and we do not know whether patients can go through different modes and the direct implications for spiritual care. Future research is needed to investigate whether these different modes also correlate with the overall well-being of patients. Other studies have shown that negative religious coping is associated with poorer quality of life (Sherman et al., Reference Sherman, Simonton and Latif2005; Tarakeshwar et al., Reference Tarakeshwar, Vanderwerker and Paulk2006), that existential and spiritual domains are related to suffering and quality of life (Mount et al., Reference Mount, Boston and Cohen2007), and that spiritual interventions addressing existential themes using a narrative approach can enhance quality of life (Kruizinga et al., Reference Kruizinga, Hartog and Jacobs2015). Therefore, in addressing spirituality, we believe that an awareness of the contingency of life should gain more attention and be employed as a basic understanding when considering life itself.
Furthermore, it is important to examine at what moment in the course of their disease that spiritual care can best be offered to cancer patients. Patients believe that professionals should know when and where to discuss spiritual concerns; however, much is still unknown about the timing of spiritual care (Edwards et al., Reference Edwards, Pang and Shiu2010). Crucial to well-timed spiritual care is timely referral, which can be done by all healthcare professionals but is primarily done by the nursing staff, as they spend the most time with patients (van Leeuwen & Cusveller, Reference van Leeuwen and Cusveller2004). Spiritual care is generally seen as a domain of palliative and hospice care, but because patients need time to open up, rethink, and reshape their life stories, it might be argued that meeting with a spiritual care provider before the terminal phase is desirable (Edwards et al., Reference Edwards, Pang and Shiu2010; Ganzevoort & Bouwer, Reference Ganzevoort, Bouwer, Ziebertz and Schweitzer2007). Therefore, the recommendations of the Spiritual Care Consensus Conference should be taken into account: patients should receive a simple and time-efficient spiritual screening at the point of entry into the healthcare system and be provided with appropriate referrals as needed (Puchalski et al., Reference Puchalski, Ferrell and Virani2009). Taking a spiritual history can be the first step in identifying potential spiritual issues and assessing the best time for referral to a board-certified chaplain (Puchalski, Reference Puchalski2014). However, to the best of our knowledge, no evidence-based research exists on the timing of spiritual care.
STRENGTHS AND LIMITATIONS OF THE STUDY
The results of our study stem from interviews conducted during a multicenter study involving academic as well as peripheral hospitals, which improves the generalizability of our results compared to single-center studies. Also, the sample size of 45 interviews increases the trustworthiness of our results compared to studies with smaller samples (Onwuegbuzie & Leech, Reference Onwuegbuzie and Leech2005). Nevertheless, the usability of our study is limited by its national context; a cross-cultural validation study is needed. Further qualitative research in other patient populations could provide more depth and a broader scope for our results. In addition, quantitative research could enrich our findings by examining whether these categories are related to patients' overall well-being and their self-reported spiritual well-being. Our findings were constrained by our patient population of advanced cancer patients, as well as by its focus on the life event of having cancer. In a different patient population or without the focus on the life event of having incurable cancer, this study could potentially have yielded different results.
In conclusion, if we want to improve spiritual care in the healthcare setting, we must understand the existential needs and experiences of these patients. Our study provides insight into the essence of the experiences of advanced cancer patients by testing theoretical notions in practice.
DISCLOSURES AND ACKNOWLEDGMENTS
We want to express our gratitude to all the patients who were willing to participate in our study. Despite their severe illness, they were willing to make time for the interviews and to be very open in speaking about their personal experiences. The authors also wish to thank the spiritual counselors who conducted the interviews and the oncologists and oncologist nurses who supervised patient inclusion. We also are grateful to Egbert van Dalen for the use of his interviews with advanced cancer patients on the topic of their experiences of contingency.
FUNDING
This study was funded by the Dutch Cancer Society/Alpe d'HuZes (grant no. UVA 2011–5311) and the Janssen Pharmaceutical Companies.
CONFLICTS OF INTEREST
The authors hereby affirm that they have no other conflicts of interests to declare.
