September 2020 Article of the Month
by John Ehman, Editor, ACPE Research Article-of-the-Month
and Manager for Pastoral Care, Penn Presbyterian Medical Center, Philadelphia PA
Johnson, R., Hauser, J. and Emanuel, L. "Toward a clinical model for patient spiritual journeys in supportive and palliative care: testing a concept of human spirituality and associated recursive states." Palliative and Supportive Care (2020): 6pp., online ahead of print, 7/30/20.
[Editor's Note: Because this article is available ahead of print, no final page numbers can be cited. References are to manuscript [MS] page numbers.]
SUMMARY and COMMENT: This month's article is interesting in part for its particular findings and in part for how it demonstrates a research-minded approach to understanding and refining broad theory, examining the conceptual structure and "clinical utility" [MS p. 5] of "a consensus model for spheres of spiritual experience aligned with domains outlined in models of palliative care and human suffering" [MS p. 2]. This consensus model was reported at a 2014 research conference by a Model Building Subgroup of the Chaplaincy Research Consortium, funded by a grant from the John Templeton Foundation [--see Related Items of Interest, §I, below]; and one of its original developers was Linda Emanuel, a co-author of our present article and now professor emeritus in medicine at Northwestern University. The model was further explicated in a 2015 article in BMC Palliative Care [--see Related Items of Interest, §II, below]. The goals of the present study were "to test the responsiveness of various healthcare professionals to the CRC [Chaplaincy Research Consortium] model's definition of spirituality" and "to test inter-professional assessment of the utility of the CRC model" [MS p. 2] with respect to its conceptualization of the processes of adjustment relevant to the spiritual journeys of palliative care patients.
The definition of spirituality at the core of the CRC model is: "the aspect of individuals that seeks and perceives significance and experiences connectedness to the sacred," ..."where the sacred is 'feeling connected to or aware of the unknowable, the infinite, immanent or transcendent in a way that creates awe, and seems to be precious, and connected to that which enlivens'" [MS p. 2]. In light of this definition, "[t]he model posits that individuals are motivated to connect with 'what's out there' (external to their selves) and/or 'what's in there' (within their selves) in order to achieve peace or well-being, and that they experience 4 stages of adjustment (Discovery, Dialogue, Struggle, and Arrival/Disconnect) as they engage in that process" [MS p. 2]. The model also acknowledges that there are "multiple paths a patient may take through these 4 stages in their spiritual experience as they adjust to illness" [MS p. 2]. Moreover, it was designed with the hope of engaging spiritual care researchers and of providing a common structure into which researchers could locate their own hypotheses.
Methodologically, the researchers took a "multi-method qualitative approach" [MS p. 5]. After a literature search grounding the conceptualization spirituality in the context of palliative care (using keywords spirituality, supportive, and palliative care), seeing it generally as "a motivational process entailing a search for, and connection with, the sacred" [MS p. 2], they convened small focus groups with five participants (i.e., "a psychologist, social worker, a palliative care chaplain, and survivor support group volunteers, one of whom was also a chaplain" [MS p. 2]), to offer reactions to the proposed definition of spirituality and to share vignettes of their experiences of patients' behaviors, activities, feelings, and thoughts in the course of spiritual journeys in palliative care. [A helpful table on this is provided on MS p. 3.] Analysis by thematic coding of the content of these focus groups identified 48 vignettes. It also turned up a difficulty with the language of two of the conceptualizations for the stages of adjustment:
Coders found Struggle and Dialogue to be contested stages[,] with vignette designations to them being difficult. The research team proposed there would be better understanding and consensus if these categories were renamed as Exploration and Working Through, respectively.
The researchers then used the 48 vignettes (edited) for a card sorting process, by which the focus group and select participants of a presentation about the model at a chaplaincy conference were asked to sort vignettes into the process categories of Discovery, Exploration, Working Through, and Arrival/Disconnect. Participants subsequently discussed this activity with the researchers, which led to an additional card sort with a physician group allowed now to pair categories together rather than being forced to choose one category for each vignette.
Among the key findings:
- "The CRC model asserts that spirituality can be experienced as something in and of itself or as part of the physical, social, and psychological domains. Coders noted that focus group participants concurred with the model's presumption that these domains overlap." [MS p. 3]
- "...[C]oders observed that spiritual caregivers who are skilled in observing for phenomena that signify connectedness or disconnectedness have no hesitation in identifying connectedness or providing examples of the phenomena they look for. Content analysis of focus group transcripts showed 'feelings, values, and relationships' are the phenomena frequently cited by participating health professionals to characterize their observation of connectedness, with 'feeling' being the most frequently cited and most desired focus for further exploration with patients." [MS p. 4]
- With regard to sorting the 48 vignettes into the 4 process categories, participants indicated difficulty with the categories of Exploration and Working Through, even thought these had been renamed from the original titles of Dialogue and Struggle in order to make them easier to use. [--see MS p. 4]
- Results support an "emerging hypothesis that the Exploration and Working Through stages [are] rarely seen as isolated stages but more as precursors to other stages...." The authors speculate that Exploration and Working Through may be "states of mind more frequently characterized by extra activity, moving between states, than Arrival or Discovery." [MS p. 4]
The authors sum up:
Our study contributes to the literature by showing consensus among health professionals providing supportive and palliative care (including a psychologist, social worker, palliative care chaplain, and palliative care physicians) that an experience of "connectedness" characterizes palliative care patients' diverse experiences of spirituality despite the fact that, as one participant commented: "specifics are different." Participants in our study also affirmed that spiritual experiences exist within physical, psychological, and social occurrences and not only in purely spiritual occurrences. Participants could readily identify the stages from the CRC model of Discovery and Arrival but were less able to identify stages of Exploration and Working Through until able to pair those stages with other stages. This suggests that there may be multiple paths through these stages and that some of these stages may be experienced simultaneously. [MS pp. 4-5]
Among the limitations here is the use of a category-based approach: "Category-based approaches are necessarily limited in their capacity to discover novel and unexpected relations between the individual and their states of being because the categories used to summarize experience are typically developed rationally and are, thus, constrained by prior theory and researchers' intuitions" [MS p. 5]. Also, the use of "single experience vignettes as proxies for processes...downplays contextual nuance" [MS p. 5]. The authors recommend that future research to refine the CRC model "include further development of methods to capture the necessarily subjective and unique, yet fundamental and potentially generalizable spiritual processes of patients" [MS p. 5]. They also suggest that "[m]ethods developed by narrative identity researchers to ensure research is inclusive of narrative and personal storytelling may also prove fruitful" [MS p. 5].
This article is certainly thought provoking along the lines of the CEC model itself, which seeks to be a broad frame for spiritual care research in the palliative context. It is especially intriguing via the finding that its four process categories are not entirely of like kind, as two not only required re-titling but seemed to work differently in application (i.e., pairing with other categories). This suggests to the present reader that more attention should be paid to the basic four-point conceptual structure of the model, with perhaps additional reconsideration of what "Exploration" and "Working Through" has been conceptualized to involve. However, over and above the insights on the CRC model, the authors here have provided a practical example of how even a very broad theory of spirituality can be the subject of research and a check and balance to the insightful yet subjective wisdom of experienced providers. While teasing out the validity of theoretical models is a slow and complex process, one avenue for research in chaplaincy can be to test the practicability of models --how very usable some paradigm or protocol might be in the clinical setting. Not too many years ago, broad models like the one examined here proceeded from the authority of their creators, but now the field of chaplaincy is little-by-little bringing a larger epistemology to bear, acknowledging that patients don't live in a world of theory and that chaplains must make the effort to see that theories of spiritual care are faithful to the real world of patients.
Note: See Related Items of Interest, §VI, below, regarding "card sorting."
Suggestions for Use of the Article for Student Discussion:
This month's article should be useful to any chaplaincy group, though some significant clinical experience in palliative and end-of-life care would seem optimal. It's a chance first to think broadly about conceptualizations that structure our understanding of patients and guide our practice. So, discussion could begin with the basic conceptualizations presented here: the definition of spirituality, the emphasis on "connectednesss," and the four process categories of the model. Like the participants in the study, the group could talk about how the proposed definition of spiritual resonates (or doesn't) and share vignettes that might clarify by example what the CRC model tries to encompass, looking especially at the table of Patient Experiences of the Sacred on MS p. 3. Do the process categories seem useful --some more than others? Do members of the group believe it feasible to pin down "fundamental and potentially generalizable spiritual processes of patients" [MS p. 5]? It is likely, however, that such discussion among chaplains could spin out quite expansively and call for some re-focusing on the article itself. What does the group think of the methodology? Would they have investigated the CRC model any differently? Does the approach (methodology) of the authors suggest means by which chaplains could examine other models in the field? Depending on how much the group has experience with research will obviously affect the course and content of the discussion, but chaplains newer to research would probably benefit from a careful look at the very rich first paragraph for an overview of how research has established important evidence around outcomes [--and in light that brief overview, students might want to look more in depth via Related Items of Interest, §IV, below].
Related Items of Interest:
I. The CRC model was presented at the March 21-April 3, 2014 Caring for the Human Spirit conference in New York, NY. The various slide presentations from that event are available online, including "Workings of the Human Spirit in Palliative Care Situations: a Consensus Model," by Linda Emanuel, George Handzo, George Grant, Kevin Massey, Angelika Zollfrank, Diana Wilke, Walter Smith, and Kenneth Pargament.
II. The following article formally presented in publication the CRC model in 2015.
Emanuel, L., Handzo, G., Grant, G., Massey, K., Zollfrank, A., Wilke, D., Powell, R., Smith, W. and Pargament, K. "Workings of the human spirit in palliative care situations: a consensus model from the Chaplaincy Research Consortium." BMC Palliative Care 14 (2015): 29 [electronic journal article designation], online 6/2/15. [This article is available freely online from the journal.] [(Abstract:) BACKGROUND: Chaplaincy is a relatively new discipline in medicine that provides for care of the human spirit in healthcare contexts for people of all worldviews. Studies indicate wide appreciation for its importance, yet empirical research is limited. Our purpose is to create a model of human spiritual processes and needs in palliative care situations so that researchers can locate their hypotheses in a common model which will evolve with relevant findings. METHODS: The Model Building Subgroup worked with the Chaplaincy Research Consortium as part of a larger Templeton Foundation funded project to enhance research in the area. It met with members for an hour on three successive occasions over three years and exchanged drafts for open comment between meetings. All members of the Subgroup agreed on the final draft. RESULTS: The model uses modestly adapted existing definitions and models. It describes the human experience of spirituality during serious illness in three renditions: visual, mathematical, and verbal so that researchers can use whichever is applicable. The visual rendition has four domains: spiritual, psychological, physical and social with process arrows and permeable boundaries between all areas. The mathematical rendition has the same four factors and is rendered as an integral equation, corresponding to an integrative function postulated for the human spirit. In both renditions, the model is notable in its allowance for direct spiritual experience and a domain or factor in its own right, not only experience that is created through the others. The model does not describe anything beyond the human experience. The verbal rendition builds on existing work to describe the processes of the human spirit, relating it to the four domains or factors. CONCLUSIONS: A consensus model of the human spirit to generate hypotheses and evolve based on data has been delineated. Implications of the model for how the human spirit functions and how the chaplain can care for the patient or family caregiver's spiritual coping and well-being are discussed. The next step is to generate researchable hypotheses, results of research from which will give insight into the human spirit and guidance to chaplains caring for it.]
III. For more on the definition of spirituality see the following article reporting the culmination of a series of consensus conferences on spirituality in palliative care.
Puchalski, C. M., Vitillo, R., Hull, S. K. and Reller, N. "Improving the spiritual dimension of whole person care: reaching national and international consensus." Journal of Palliative Medicine 17, no. 6 (June 2014): 642-656. [(Abstract:) Two conferences, Creating More Compassionate Systems of Care (November 2012) and On Improving the Spiritual Dimension of Whole Person Care: The Transformational Role of Compassion, Love and Forgiveness in Health Care (January 2013), were convened with the goals of reaching consensus on approaches to the integration of spirituality into health care structures at all levels and development of strategies to create more compassionate systems of care. The conferences built on the work of a 2009 consensus conference, Improving the Quality of Spiritual Care as a Dimension of Palliative Care. Conference organizers in 2012 and 2013 aimed to identify consensus-derived care standards and recommendations for implementing them by building and expanding on the 2009 conference model of interprofessional spiritual care and its recommendations for palliative care. The 2013 conference built on the 2012 conference to produce a set of standards and recommended strategies for integrating spiritual care across the entire health care continuum, not just palliative care. Deliberations were based on evidence that spiritual care is a fundamental component of high-quality compassionate health care and it is most effective when it is recognized and reflected in the attitudes and actions of both patients and health care providers.] [This was featured as our June 2014 Article-of-the-Month, with special attention to the definition of spirituality.]
IV. Research on spirituality in the palliative care context is wide-ranging, but the following articles that have been featured as ACPE Research Articles-of-the-Month may be especially good footholds in the literature.
The September 2019 Article-of-the-Month:
Fitchett, G., Pierson, A. L. H., Hoffmeyer, C., Labuschagne, D., Lee, A., Levine, S., O'Mahony, S., Pugliese, K. and Waite, N. "Development of the PC-7, a quantifiable assessment of spiritual concerns of patients receiving palliative care near the end of life." Journal of Palliative Medicine (2019): online ahead of print, September 4, 2019; 6pp. [This article, along with supplementary material, is available freely on the Internet by open access.]
The October 2017 Articles-of-the-Month (group of three):
Steinhauser, K. E. and Balboni, T. A.
"State of the Science of Spirituality and Palliative Care Research: Research Landscape and Future Directions." Journal of Pain and Symptom Management 53, no. 3 (September 2017): 426-427. [Brief introduction to the two major survey articles to follow.]
Steinhauser, K. E., Fitchett, G., Handzo, G. F., Johnson, K. S., Koenig, H. G., Pargament, K. I., Puchalski, C. M., Sinclair, S., Taylor, E. J. and Balboni, T. A. "State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes." Journal of Pain and Symptom Management 53, no. 3 (September 2017): 428-440. [(Abstract:) The State of the Science in Spirituality and Palliative Care was convened to address the current landscape of research at the intersection of spirituality and palliative care and to identify critical next steps to advance this field of inquiry. Part I of the SOS-SPC two-part series focuses on questions of 1) What is spirituality? 2) What methodological and measurement issues are most salient for research in palliative care? And 3) What is the evidence relating spirituality and health outcomes? After describing current evidence we make recommendations for future research in each of the three areas of focus. Results show wide variance in the ways spirituality is operationalized and the need for definition and conceptual clarity in research in spirituality. Furthermore, the field would benefit from hypothesis-driven outcomes research based on a priori specification of the spiritual dimensions under investigation and their longitudinal relationship with key palliative outcomes, the use of validated measures of predictors and outcomes, and rigorous assessment of potential confounding variables. Finally, results highlight the need for research in more diverse populations.]
Balboni, T. A., Fitchett, G., Handzo, G. F., Johnson, K. S., Koenig, H. G., Pargament, K. I., Puchalski, C. M., Sinclair, S., Taylor, E. J. and Steinhauser, K. E. "State of the Science of Spirituality and Palliative Care Research Part II: Screening, Assessment, and Interventions." Journal of Pain and Symptom Management 53, no. 3 (September 2017): 441-453. [(Abstract:) The State of the Science in Spirituality and Palliative Care was convened to address the current landscape of research at the intersection of spirituality and palliative care and to identify critical next steps to advance this field of inquiry. Part II of the SOS-SPC report addresses the state of extant research and identifies critical research priorities pertaining to the following questions: 1) How do we assess spirituality? 2) How do we intervene on spirituality in palliative care? And 3) How do we train health professionals to address spirituality in palliative care? Findings from this report point to the need for screening and assessment tools that are rigorously developed, clinically relevant, and adapted to a diversity of clinical and cultural settings. Chaplaincy research is needed to form professional spiritual care provision in a variety of settings, and outcomes assessed to ascertain impact on key patient, family, and clinical staff outcomes. Intervention research requires rigorous conceptualization and assessments. Intervention development must be attentive to clinical feasibility, incorporate perspectives and needs of patients, families, and clinicians, and be targeted to diverse populations with spiritual needs. Finally, spiritual care competencies for various clinical care team members should be refined. Reflecting those competencies, training curricula and evaluation tools should be developed, and the impact of education on patient, family, and clinician outcomes should be systematically assessed.]
V. Our featured article mentions Acceptance Commitment Therapy in passing, with a reference but no explanation. That reference (Low, J., et al., "Acceptance and commitment therapy for adults with advanced cancer (CanACT): study protocol for a feasibility randomised controlled trial," Trials 17 (2016): 77 [electronic journal article designation], online 2/11/16) offers some introduction to the therapy but only notes spirituality tangentially. The following articles consider Acceptance Commitment Therapy with spirituality as a key focus, with the one by Karekla, M., et al. being especially relevant.
Karekla, M. and Constantinou, M. "Religious coping and cancer: proposing an acceptance and commitment therapy approach." Cognitive and Behavioral Practice 17, no. 4 (November 2010): 371-381. [(Abstract:) A cancer diagnosis is one of the most difficult diagnoses for any person to receive and cope with. Numerous individuals turn to religion or their spiritual beliefs to find meaning through the process of coping with such a serious illness. Therefore, in recent years research on religious coping has received increased attention. The aim of the present paper is to examine the area of religious coping, along with its dimensions and ways to assess it, as it relates to cancer. Moreover, this paper presents a relatively new approach to the psychological treatment of individuals with cancer. Namely, Acceptance and Commitment Therapy (ACT) is a spiritually and religiously sensitive treatment. This approach aims to first explore a person's values (including spiritual and religious values), to subsequently help the person accept any experience that the person has no control over in light of these values, and to then commit and take actions consistent with these values. Recent evidence providing initial support for this approach is discussed. Finally, a case example is presented to illustrate how ACT may be carried out to address religious coping in outpatient clinical practice with cancer patients.]
Santiago, P. N. and Gall, T. L. "Acceptance and commitment therapy as a spiritually integrated psychotherapy." Counseling and Values 61, no. 2 (October 2016): 239-254. [(Abstract:) This article presents acceptance and commitment therapy (ACT) as a spiritually integrated therapeutic modality. ACT is a value-driven therapy that involves facilitating transcendence of physical, mental, and emotional experience to alleviate human suffering; as such, ACT shares common ground with the domain of spirituality. Approached as a spiritually integrated therapy, ACT can help clients to access spiritual resources and create life meaning as well as aid in the resolution or transformation of spiritual struggles. Given that spiritual struggles, in particular, can have a significant impact on mental health and well-being, this article provides guidance in how ACT can address such struggles.]
VI. Card sorting is a central methodological element in our featured study, and for this the researchers used an online program. Regarding the methodology per se, a reference is given for "Vyjeyanthi et al., 2010" [MS p. 3, and bibliography]. However, the authorship for this reference is incorrect in the ahead-of-print version of our article and should read: Periyakoil, V. S., Noda, A. M. and Kraemer, H. C. [--Vyjeyanthi is the first author's given name, not surname]. While that article is germane to the subject of card-sorting, it may not offer the best insight into sorting methodology. For a fairly thorough introduction, the following paper may be more useful.
Harloff, J. and Coxon, A. "How to sort: a short guide on sorting investigations." Paper published online via http://methodofsorting.com, 2006; version 1.1, English version, January 01, 2007; available directly at methodofsorting.com/HowToSort1-1_english.pdf.