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Out of the blue
Experiences of contingency in advanced cancer patients
Kruizinga, R.
Publication date
2017
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Kruizinga, R. (2017). Out of the blue: Experiences of contingency in advanced cancer
patients.
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S
ummary and general discussion
Summary
In recent decades, spirituality has become increasingly important in palliative healthcare in particular. On the one hand, the importance of spirituality and spiritual well-being for patients is widely recognized; on the other, there is very little well-founded research sub-stantiating this statement. In this thesis we want to contribute to the research evaluating the effects of spiritual care in patients with advanced cancer in order to strengthen the foundation of that care and to gain insights into the actual experiences of patients. We have used both qualitative and quantitative research methods, allowing us to address the topic as broadly as possible. The introduction to this thesis outlined the framework of the following chapters.
In the second chapter we laid out the design of a randomised controlled trial eval-uating the effect of structured reflection on life events and life goals on the quality of life and spiritual well-being of patients with advanced cancer. In this trial we use a brief struc-tured interview scheme supported by an e-application. Based on the findings of our previ-ous research, we have developed a brief interview model that allows spiritual counsellors to explore, explicate and discuss life events and ultimate life goals with cancer patients. To support the interview, we created an e-application for a PC or tablet. Patients with advanced cancer who are not amenable to curative treatment options are randomised to either the intervention or the control group. The intervention group has two consultations with a spiritual counsellor, using the interview method supported by the e-application. The control group receives care as usual. At baseline and two and four months after baseline, all pa-tients fill out questionnaires regarding their quality of life, spiritual well-being, satisfaction with life, anxiety and depression. Having an insight into one’s ultimate life goals may help when integrating a life event such as cancer into one’s life story. This is the first randomised controlled trial to evaluate the role of an assisted structured reflection on life events and ultimate life goals to improve patients’ quality of life and spiritual well-being. The interven-tion is brief and is based on concepts and skills that spiritual counsellors are familiar with, so that it can be easily implemented in routine patient care and incorporated into guidelines for spiritual care.
The field of spiritual interventions was further investigated in the third chapter. Here we presented the results of a systematic review and meta-analysis reviewing the ef-fect on the quality of life of cancer patients of spiritual interventions addressing existential themes using a narrative approach. We conducted our search on 6 June 2014, in Medline, PsycINFO, Embase and PubMed. Included were all clinical trials that compared standard care with a spiritual intervention addressing existential themes using a narrative approach. Study quality was evaluated using the Cochrane Risk of Bias Tool. A total of 4972 studies were identified, of which 14 clinical trials (2050 patients) met the inclusion criteria and 12 (1878 patients) were included in the meta-analysis. The overall risk of bias was high. When combined, all studies showed a moderate effect on overall quality of life in favour of the spiritual interventions: (d) 0.50 (95% CI = 0.20-0.79) 0-2 weeks after the intervention. Me-ta-analysis at 3-6 months after the intervention showed a small, insignificant effect (0.14, 95% CI = 0.08 to 0.35). Subgroup analysis including only the Western studies showed a small effect of 0.17 (95% CI = 0.05-0.29). Including only studies that met the allocation conceal-ment criteria showed an insignificant effect of 0.14 (95% CI =0.05 to 0.33). Directly after they occurred, spiritual interventions had a moderate beneficial effect in terms of improving the quality of life of cancer patients when compared with a control group. No evidence was
found that the interventions maintained this effect up to 3-6 months after the intervention. Further research is needed to understand how spiritual interventions could contribute to a long-term effect of increasing or maintaining quality of life.
Chapter 4 discussed whether images of God and images of death affect spiritual well-being. When patients are facing the end of life, spiritual concerns often become more important. It is argued that effective, integrated palliative care should include addressing pa-tients’ spiritual well-being (SWB). In 2002, the EORTC Quality of Life Group began an interna-tional study to develop an SWB measure for palliative patients. SWB is a complex construct, which comprises multiple potentially contributory factors. While conducting the EORTC SWB validation study with Dutch palliative cancer patients, we also conducted an explorato-ry side study to examine the relationship between their SWB, images of God and attitudes towards death. Patients with incurable cancer who were able to understand Dutch and were well enough to participate completed the provisional SWB measure and two scales assess-ing “images of God” and “attitudes towards death and afterlife”. Linear stepwise regression analysis was conducted to assess the relationship between SWB and other factors. Fifty-two Dutch patients participated: 28 females and 24 males. The whole SWB measure validation identified four scoring scales: Existential (EX), Relationship with Self (RS), Relationships with Others (RO), Relationship with Something Greater (RSG) and Relationship with God (RG). Adherence to an image of an Unknowable God and a worse WHO performance status were negatively associated with the EX scale. The image of an Unknowable God was also found to be negatively associated with the RS scale. Higher education correlated positively with the RO scale. Adherence to a Personal or Non-Personal Image of God was not found to influence any of the SWB domains positively. For our participants, an Unknowable Image of God had a negative relationship with their SWB. Furthermore, specific images of God (Personal or Non-Personal) were not associated with domains of SWB. Together, these findings suggest that SWB surpasses traditional religious views. The development of a new language which more naturally expresses different images of a higher being of patients in Western late-mod-ern societies may aid in understanding and, subsequently, in improving patients’ SWB.
In the fifth chapter, we elaborated further on the newly developed intervention – this time from the perspective of the spiritual counsellors. Good palliative care requires ex-cellent inter-professional collaboration; however, working in inter-professional teams may be challenging and difficult. The aim of the study is to understand the lived experience of spiritual counsellors working with a new structured method when offering spiritual care to palliative patients in relation to a multidisciplinary healthcare team. Interpretive phenome-nological analysis of in-depth interviews was conducted using template analysis to structure the data. We included nine spiritual counsellors trained in using the new structured method to provide spiritual care for advanced cancer patients. Although these counsellors experi-enced struggles with the structure and the iPad, they were immediately willing to work with the new structured method as they expected it to improve the visibility of their profession and to professionalize their work. In this process they experienced a need to adapt to a certain role while working with the new method, and described how the identities of their profession were challenged. There is a need to concretise, professionalise and substantiate the work of spiritual counsellors in a healthcare setting, to enhance their visibility for pa-tients and to improve inter-professional collaboration with other healthcare workers. How-ever, introducing new methods to spiritual counsellors is not easy as this may challenge or jeopardize their current professional identities. We therefore recommend engaging spiritual counsellors early in processes of change in order to ensure that the core of who they are as
professionals remains reflected in their work.
Chapter 6 described the experiences of contingency in advanced cancer patients. Throughout their lives, people are confronted with unexpected life events which can be diffi-cult to incorporate into their life narratives. Such a confrontation can result in an experience of contingency. Different ways of relating to contingency have been described by Wuchterl: denial, acknowledgement and “encounter with the Other.” In this study we aim to trace these theoretical distinctions in the real-life experiences of patients. We analysed 45 inter-views using the constant comparative method with a directed content analysis approach in the Atlas.ti coding program. The interviews originated from a randomised controlled trial evaluating an assisted reflection on life events and ultimate life goals. Seven spiritual coun-sellors from six hospitals in the Netherlands conducted the interviews between July 2014 and March 2016. All 45 patients had advanced cancer. We found four different modes into which relating to contingency can be classified: denying, acknowledging, accepting and re-ceiving. With denying, patients did not mention any impact of the life event on their lives. In acknowledging, the impact was recognized and a start was made to incorporate the event into their life. In accepting, patients went through a process of reinterpretation of the event. In receiving, patients talked about receiving insights from their illness and living a more con-scious life. Our study is the first to investigate the different ways of relating to contingency in clinical practice. The defined modes will improve our understanding of the various ways in which cancer patients relate to their disease, allowing caregivers to better target and shape individual care.
Next, chapter seven examined whether these four modes of relating to contingen-cy can also be found in an American advanced cancer population. Being diagnosed with incurable cancer can be a life-changing experience, evoking different existential questions and spiritual needs. A confrontation with a life event that is neither necessary nor avoida-ble and which is difficult to fit into one’s personal life story can be called an experience of contingency. Having already studied different modes of relating to the contingent life event of having advanced cancer in a Dutch patient population, we now turned to an American population with advanced cancer patients. We included eight patients with advanced can-cer from the George Washington University Cancan-cer Center. All patients were interviewed twice, discussing their life events and life goals using a semi-structured interview model with a guided e-application. All the interviews were then transcribed and analysed, focusing on how the patients described the way they related to the experience of having advanced cancer. The constant comparative method with a directed content analysis approach was used to code the different fragments. The results of the analyses show that the four modes of relating to contingency that we found in a Dutch advanced cancer population can also be found in an American cancer patient population, but differences were found in the extended way American patients described the fourth mode of ‘receiving’. This study thus provides a broader and deeper understanding of relating to the experience of contingency in having incurable cancer – an understanding which is crucial in developing accurate spiritual care for advanced cancer patients.
The quantitative results of the randomised intervention study are described in the eighth chapter. The diagnosis and treatment of incurable cancer as a life-changing experi-ence evokes difficult existential questions. A structured reflection could improve patients’ quality of life (QoL) and spiritual well-being (SWB). We therefore developed an interview model with an e-application, allowing spiritual counsellors to discuss life events and ul-timate life goals. We performed an RCT to evaluate the effect of an assisted structured
reflection on QoL and SWB. Adult patients with incurable cancer and a life expectancy of > 6 months were randomised in a 1:1 ratio to the intervention or the control group. The main exclusion criteria were Karnofsky Performance Score < 60, insufficient command of Dutch and current psychiatric disease. The intervention group had two consultations with a spiritual counsellor. The control group received standard care as usual. EORTC QLQ-C15-PAL (QoL) and the FACIT-sp (SWB) were administered at baseline and at two and four months after baseline. QoL and SWB were the main outcomes. Mixed models analysis was used to test group differences over time. Linear regressions and logistic regressions were used for explorative analysis. In all, 153 patients from six different hospitals were included: 77 in the intervention group and 76 in the control group. QoL and SWB did not significantly change over time between the groups. The subscale of SWB, the experience of Meaning/Peace, was found to significantly influence QoL (00.52, Adj.R2 0.26) and Satisfaction with Life (P0.61, Adj.R2 0.37). No significant difference in QoL and SWB was demonstrated between the in-tervention and control groups. Future inin-terventions by spiritual counsellors aimed at im-proving QoL and SWB should focus on the provision of sources of meaning and peace.
General discussion and directions for future research
Setting the stage
In recent years the attention for spirituality within the medical oncological field has substan-tially grown. The importance of spiritual care is increasingly recognized and introduced as standard in several oncology guidelines [1, 2]. Spiritual care is associated with better overall quality of life, psycho-social well-being and spiritual well-being [3, 4]. However, there is still a tendency to underrate or ignore spiritual needs within the bio psychosocial paradigm, and non-medical input into general health team discussions tend to be undervalued by medical-ly trained team members [5-7]. Also, patients indicate that their spiritual needs are neglect-ed in standard clinical environments [8]. Thereby, the practice of spiritual care professionals working in a hospital is usually not evidence-based and other health care professionals find it hard to define what spiritual care includes [9-14].
Furthermore, the concept of spirituality is multifaceted, making it a difficult con-struct for research and the many different definitions hamper the operationalisation of the term [15-17]. Here we aim to set out current problems that hinder a fully-fledged integra-tion of spiritual and medical care, in the form of five statements, that address these obsta-cles.
1. Spiritual care requires a clear and inclusive definition of spirituality
Spirituality is often regarded as a broad and shady concept and therefore difficult to grasp. This may not only be true for health care professionals, but also for patients, especially in secularized countries. Indeed, the term ‘spirituality’ carries different connotations in secularized parts of Europe as compared to the United States [18]. In the early days, ‘spirituality’ was reserved for the most faithful religious people, who had actual spiritual experiences or an intense internal spiritual life [19]. In modern times, spirituality has be-come a collective term for all experiences that transcend the ordinariness of this world, where secular, agnostic or non-theistic people can also have spiritual experiences. How then, should we define spirituality in our days? In 2009 a Consensus Conference agreed upon a definition of spirituality: ‘Spirituality is the aspect of humanity that refers to the way
individuals seek and express meaning and purpose and the way they experience their con-nectedness to the moment, to self, to others, to nature, and to the significant or sacred’ [20]. Herein secular and religious elements are combined, making it an inclusive definition appli-cable to patients regardless of specific religious denominational affiliation.
Subsequently, the International Consensus Conference held in Geneva expanded on this definition by highlighting the dynamic dimension of spirituality, emphasizing com-munity, unconsciousness and transcendence [21]. This definition is consistent with patients’ experiences with spiritual care when they express religious and non-religious aspects in seeking meaning, purpose and transcendence in life [22]. Thus, an effort is being made to arrive at a consensus on the concept of spirituality that is considered relevant to healthcare settings. A wide-shared and inclusive definition will contribute to valid and more stand-ardized concepts of spirituality that allow for operational deployment in interdisciplinary research that is aimed at recognizing and treating the spiritual needs of our patients in a modern society.
2. Empirical evidence for spiritual care interventions should be improved
The research field of spirituality in health care is relatively new: until the 1980s the word spirituality did not even appear in Medline [23], but in the past decade it has taken an enormous leap forward [24, 25]. However, the practice of spiritual care professionals, in-cluding chaplains, pastoral counsellors, etc, has had little direct benefit from the research developments in their field [9]. The limited validity and visibility of spiritual care profes-sionals in health care can, in part, be attributed to the way spiritual care profesprofes-sionals are traditionally trained to avoid an agenda in their encounters with patients and rather to re-spond to any presenting issue. This approach also makes the assessment of outcomes chal-lenging and may even require a change in the mindset of spiritual care professionals [13, 26]. Well-founded theories that underpin empirical insights of the practice of spiritual care professionals [27-31] and more well-developed clinical trials of spiritual interventions [20, 25, 32, 33], may increase the validity and visibility of spiritual care. Here the way in which medical research is structured and its history of evidence-based practice, such as following study protocols, randomised study designs, and informed consents procedures, should be leading [34].
For the definition of outcome parameters, however, the medical curative paradigm may not suffice, as spiritual care is more concerned with being present to and accompanying the patient in their suffering helping them find peace as opposed to fixing or curing their suffering [26]. The current emphasis on quality of life already moves closer to a relevant endpoint for spiritual care interventions [35, 36]. Nevertheless, the currently available in-struments do not quite grasp concepts like ‘having gained insight’ or ‘having attained peace’. We have to work towards an outcome oriented spiritual care that adequately covers the different aspects of spirituality as well as theoretically grounded insights that coincide with patients’ actual experiences [37-39].
3. Understanding patients’ experiences of contingency is paramount to deliver effective spiritual care
In the awareness that human life is subject to many uncontrollable events, spiritual care can provide expression to incurable, irresolvable or tragic situations and help people to make a connection to their own life story [40]. The aim of spiritual care is to facilitate meaning making [41], providing patients guidance to adequately deal with difficult situations [42].
These difficult situations are often characterized by contingency, i.e. something that befalls ‘out of the blue’. Contingency is often experienced when a confrontation with an unexpect-ed life event has a profound impact on one’s live and is difficult to incorporate into one’s life narrative [43, 44]. In health care, experiences of contingency are every day’s business, especially in an oncology department where the diagnosis of cancer suddenly disrupts the life of many patients [45, 46]. The confrontation with a contingent life event requires sub-sequent processes of adaptation and interpretation [47]. A creative process of narrative reconstruction facilitates this and spiritual care aims to support patients in this process of reinterpretation [44, 48, 49]. Relating to the experience of contingency in having incurable cancer can manifest itself in different modes. In a Dutch advanced cancer population, four modes have been distinguished - denying, acknowledging, accepting and receiving [50], in which patients increasingly come to terms with the turns of fate that they are confronted with. These empirical based distinctions may guide spiritual care professionals in specifically tailoring interventions to individual patients.
4. Attention to spiritual needs of patients is a task for every health care practitioner
Acknowledging the complexity of providing good spiritual care, it may be argued that a spiritual care professional, who is specifically trained in specialized spiritual care, is the one who should provide this care [41, 51]. E.g. understanding patients’ experiences of contin-gency and assisting in the narrative integration of these experiences into one’s life (cf. 3) can be considered as a specific task for spiritual care professionals [52]. However, general atten-tion to patients’ spiritual needs should be regarded a shared responsibility for all care takers, including nurses, doctors and other health care providers as spiritual care professionals are largely dependent on professionals from other disciplines to make them aware of patients’ spiritual needs [39, 41, 53-55]. Two Consensus Conferences already agreed upon a general-ist-specialist model in which health care practitioners do a spiritual screening and then work with the spiritual care professional to address the spiritual needs [20, 21]. Traditionally, of the different health care providers attention to spiritual needs has mostly been paid by nurs-es, based on the holistic approach of the nursing profession [56]. At the same time, nurses still struggle with this task because of the complexity of spiritual care, the time it consumes and the lack of knowledge to provide good spiritual care [57-59]. Likewise, many doctors feel unskilled and uncomfortable discussing spiritual concerns [14], raising the question whether all health care professionals should be able to provide quality spiritual care [60]. Useful assessment tools have been developed to detect spiritual needs [61, 62] and in-cluding brief questions in clinical consultations like: ‘where do you find strength in times like these?’ or ‘do you feel at peace?’ may be very helpful in opening up to the spiritual domain [63]. Furthermore, training of health care practitioners may improve awareness to recognize and respond to spiritual needs, and subsequently even increase job satisfaction when meeting patient needs [64]. The overall care for palliative patients can be improved by incorporating patients’ life view, convictions and spiritual beliefs as they impact treatment and end-of-life-decisions [39, 63, 65].
5. Courses on spirituality and spiritual care should be mandatory in medical curricula
A recent letter of the Dutch State Secretary for Health, Welfare and Sport to the parliament stated that “within the health care field there is insufficient familiarity with the role and ex-pertise of spiritual care professionals.(…) A lack of awareness of and familiarity with spiritual guidance by other health care providers leads in many cases to a failing referral” [66].
Inadequate training of medical professionals is one the main reasons why physicians do not refer patients to spiritual care [65]. Spiritual care professionals are dependent on the institution and the physicians for their integration in the health care system and for the way they are allowed to work; therefore, the understanding of what they do and the recognition of their expertise by other clinicians is fundamental [39]. We believe that the best place to start this training is the medical curriculum. Previous studies have shown that medical students who had on-call experience shadowing a spiritual care professional had a better understanding of the role of spirituality in health care, the spiritual care professional in a hospital setting, a better idea of utilize spiritual care professionals in the future and even an enhanced doctor-patient relationship [67, 68].
In the US now more than hundred medical schools have integrated religious and spiritual issues into their curriculum [69], but in more secularized countries as Australia only recently the remarks ‘should medical curricula address spirituality’ and ‘perhaps a wider curriculum than science alone in medical schools is needed’ has come up [25, 70]. In sec-ularized countries attention for spirituality in the medical education is often a blind spot. The implementation of spirituality courses faces barriers in many countries and questions as ‘how should it be done, who should teach it and how should it be assessed’ are still unanswered [69, 71]. Also, convincing deans of medical schools to include spirituality in the medical curriculum is still found to be a challenge [72]. Another challenge in shaping spirituality courses is to meet the need for competency-based education that involves an adequate amount of practical training [73, 74], but just as important, facilitating openness and intensive self-assessment to participants’ own spirituality [70, 73].
Overcoming barriers
Overcoming barriers and speaking each other’s language is essential in interdisciplinary re-search and in good interdisciplinary collaboration [75]. For the field of spiritual care, this begins by using a clear and inclusive definition of spirituality, substantiating spiritual care and using medical standards of evidence based practice. Including spirituality in the med-ical curriculum would raise awareness of medmed-ical practitioners for their task of attending to patients’ spiritual needs and, subsequently, to better, more and appropriate referral for spiritual care. When we aim at providing the best care to our patients, these steps are not just ‘interesting directions’, but by all means necessary steps to be taken.
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