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February 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

 

Roze des Ordons, A. L., Sinclair, S., Sinuff, T., Grindrod-Millar, K. and Stelfox, H. T. "Development of a clinical guide for identifying spiritual distress in family members of patients in the Intensive Care Unit." Journal of Palliative Medicine 23, no. 2 (February 2020): 171-178.


SUMMARY and COMMENT: This month's article is valuable on at least three main levels. First, it presents "an evidence-informed practical clinical guide" [p. 177], "the purpose being to help clinicians without specialized training in spiritual care identify family members of ICU patients who might benefit from spiritual support" [p. 172]. Second, it "makes an important contribution to existing literature by establishing definitions that are conceptually aligned with the expert experiences of spiritual health practitioners and that resonate with both clinicians and family members" [p. 175]. And third, it demonstrates a model for consensus-building for the development of such documents as the clinical guide.

The authors comment at the outset on the "notable absence of empirically developed recommendations for identifying the spiritual support needs of families in critical care settings" [p. 172] and seem concerned about "ICUs without a dedicated unit spiritual health practitioner or chaplain" [p. 171]. Their goal was to involve a wide sample of experts from across Canada and "reach consensus on a parsimonious set of items that would fulfill the purpose of the clinical guide" [p. 172]. They worked through the directors of spiritual care services of 15 university-affiliated hospitals and the Canadian Association of Spiritual Care. Ultimately, 21 spiritual health practitioners participated in a three-round Delphi process [--see Items of Related Interest, §I, below], whereby an item rating instrument was completed anonymously, and it was iteratively modified after each round in light of the information being gathered. For the first two rounds, open-ended questions were part of the survey. Then, 16 participants attended a one-day consensus conference, which was audio-taped. Subsequently, 3 physicians, 2 nurses, 1 social worker, and 4 family members provided end-user feedback. From an original list of 118 items identified from a scoping review of the literature [--see Items of Related Interest, §II, below] and interviews and focus groups, a collection of 46 consensus items emerged. Supplemental appendices available from the journal show the full Delphi Survey for Round 1, the flow of items through the three survey rounds, and a Qualitative analysis of written comments with illustrative quotes. These supplements open up a detailed picture of the consensus process that may be a useful model for chaplains working to develop content for research instruments and educational materials or to clarify conceptualizations in the field.

One of the by-products of this project is the specification of an operational definition of spirituality that, while "not intended to be universal" [p. 175], nevertheless adds to the conceptual literature regarding spirituality and spiritual distress. This chaplain reader found the article's definition of spirituality to be somewhat similar to the definition that resulted from a major international consensus project in palliative care, reported in 2014 (by Puchalski, et al.), yet somewhat more practical in its language. This month's authors cite, but do not compare, their definition with that earlier one; nevertheless, here they are side-by-side:

Roze des Ordons, et al., 2020 Puchalski, et al., 2014 [--See Items of Related Interest, §III, below]
Spirituality is a dynamic and intrinsic way in which we seek meaning, purpose, and transcendence. Spirituality is reflected in our beliefs, values, relationships to self, others, nature, and that which we identify as sacred, as well as traditions and practices. It is a way of being that helps both ground and guide people as they navigate the celebrations, challenges, and sufferings of their lives. Spirituality is a dynamic and intrinsic aspect of humanity through which persons seek ultimate meaning, purpose, and transcendence, and experience relationship to self, family, others, community, society, nature, and the significant or sacred. Spirituality is expressed through beliefs, values, traditions, and practices.

The authors have paid special attention to the language used in the guide: "Given the sensitivity around spirituality and spiritual distress, our guide pays particular attention to the nuances of language in the description of key concepts, the wording of the clinical questions and the phrasing of how spiritual care can be introduced" [p. 174]. Moreover, the guide "mirrors a typical clinical approach, beginning with initial observations and followed by specific questions" [p. 174]. "It includes definitions of key concepts, a description of clinical observations and examples of clinical questions that can be helpful in identifying family members who may benefit from spiritual support, and suggested phrasing for introducing spiritual health practitioners" [p. 174]. Its complete content, appearing in the article as Table 2: Final Set of Items Developed Through Delphi Consensus Process and End-User Feedback [p. 176], is provided below (with permission of the principal author). Note: the full and final form of the guide is available from the journal as a supplemental appendix.

DEFINITIONS
  • Spirituality: Spirituality is a dynamic and intrinsic way in which we seek meaning, purpose, and transcendence. Spirituality is reflected in our beliefs, values, relationships to self, others, nature, and that which we identify as sacred, as well as traditions and practices. It is a way of being that helps both ground and guide people as they navigate the celebrations, challenges, and sufferings of their lives.
  • Spiritual distress: Spiritual distress is the overwhelming sense of unrelieved suffering that happens when a person's sense of meaning, purpose, connection, hope, or identity becomes acutely more vulnerable or is challenged. Spiritual distress can also occur when events and circumstances challenge a person's belief system and well-being.
    • Spiritual distress is a normal response to physical, emotional, and psychological suffering or loss.
    • Critical illness and ICU care introduce many stressors for family members. Spiritual distress in this setting is often underrecognized. Family members may experience spiritual distress at any time during a patient's stay in the ICU, not only at the end of life.
    • Research has identified that family members appreciate the opportunity to talk about their spirituality, and are not offended by being asked about spirituality.
    • Spiritual distress can affect family members' physical and mental health, their coping, and the decisions they make on behalf of the patient.
    • In aspiring to provide whole-person care, it is essential that we attend to the care of the human spirit.
    • Identifying spiritual distress is the first step in finding ways to support families who are struggling.
    • Spiritual distress might be identified through a combination of what people say, and nonverbal signs, such as emotions they express and certain behaviors. Some family members might experience distress internally, but not express this outwardly.
    • Building rapport to connect with the family and then asking questions that might identify spiritual distress is one way of giving permission to talk about the inner turmoil they may be experiencing.
    • People experience spiritual distress in different ways, whether individually, as a family, or as a community. While everyone's experience is unique, the features described in this guide are common themes that might help you identify family members who are experiencing spiritual distress.
CLINICAL OBSERVATIONS
  • Risk factors for spiritual distress:
    • Tension between family belief system and medical context in relation to any of the following: culture; language; religion; and spirituality.
    • Psychological and/or social challenges related to any of the following: complex family dynamics and marginalized populations.
    • High intensity and complexity of suffering related to any of the following: new diagnosis, trauma, or medical error; prolonged hospitalization; end-of-life situations; and life losses other than death (e.g.: identity, health, relationships, work, finances, belongings, culture, and future plans)
  • Concerns that can convey spiritual distress:
      Questioning or searching for meaning and purpose in any of the following: life; illness; and death.
    • Family member concern about loss of patient dignity related to any of the following: patient loss of identity; patient feeling helpless; patient feeling like a burden; patient expressed wish to die; and loss of planned future.
    • Family member sense of losing connection and relationship with any of the following: self; others; beliefs (personal, cultural, spiritual, and religious); and environment.
  • Emotions that can convey spiritual distress:
    • An intense or overwhelming emotional response out of keeping with that expected, manifested by any of the following: numbness; sadness; fear; anger; and joy.
    • Extremes of emotion: emotional lability and lack of variability in emotion.
  • Behaviors that can convey spiritual distress:
    • Avoidance behaviors as demonstrated by any of the following: persisting inability to accept the reality of the situation and not attending or delaying family meetings.
    • Preoccupation and excessive attachment as demonstrated by any of the following: overly demanding approach with health care team and splitting the health care team.
    • Religious behaviors: extreme religious language and extreme religious practices.
    • Significant acute changes in usual patterns of behaviour, including self-care.
CLINICAL QUESTIONS
  • Orienting family to the intent of questions: "We care about all dimensions of patient and family care and would like to ask a few questions about how you're doing."
  • Questions
    • How can we as a team best support you at this time?
    • What are you hoping for?
    • What concerns do you have?
    • What might help bring you comfort, peace, or strength at this time?
    • Which spiritual, religious, or other beliefs are important to you and your family as you cope with [patient's name] illness?
INTRODUCING SPIRITUAL CARE SUPPORT
  • "We recognize that this is a difficult time for you. One of our team members will be coming by within the next 24–48 hours to see if they can help support you in any way." The spiritual health practitioner can then introduce themselves and their role in a way that engages the family, while respecting their choice to decline consultation if they choose.

This reader was impressed by the content of the guide, but just as much by the cautions put forward by the authors in the article overall. They caution that the guide "should not be used as a checklist or a script, but rather as a conversation guide" [p. 174]. They caution clinicians against a "one-size-fits-all approach" [p. 175] to defining spirituality. They caution about the complexity of spiritual distress and its external manifestations that, if not observed with care, "can lead to misinterpretations based on automatic judgments and false assumptions" [p. 175]. And, they remind their clinical audience that "individuals who are not experiencing spiritual distress may also benefit from spiritual support" [p. 175]. In addition, they comment appropriately on the limitations of their study, including the limits of the Canadian cultural context, the relatively small sample of participants, and the fact that "the guide has not been applied or validated within the clinical setting, including among diverse patient populations or practice settings" [p. 177]. Regarding this last point, they say, "Next steps will be to implement the guide within the ICU context and evaluate its reliability and validity..." [p. 177].

This project is an important initiative out of the medical community to enlist spiritual care professionals to help clinicians attend to the spiritual needs of a target group. The product and the process here have the potential to set a model for further projects either on a similarly large scale or at an institutional level. This would seem a very good article to bring together departments of spiritual care and medicine in constructive dialogue and efforts.


 

Suggestions for Use of the Article for Student Discussion: 

Discussion could focus on the guide itself, given as Table 2 on p. 176. Its four sections could provide structure for the group's thinking. How does the explication of spirituality and spiritual distress strike them? How do they see the clinical observations as insightful or limited from a chaplain's perspective? Do the clinical questions seem on target for a physician to ask? And, what about the strategy of having a clinician essentially pave the way for a chaplain's visit? Also, the group might consider the observation about how "different types of distress can have similar external manifestations and multiple types of distress may be present at any given time and be intertwined and inseparable" [p. 175]. This caution is intended for clinicians, but is it a salient point for the chaplains? Does the article help the group focus on the situation of ICU family members in particular? What does the group think about the consensus process used here? What is the relationship between individual expertise and cumulative consensus in the creation of materials like this clinical guide? How might they imagine using a consensus process for other projects?


 

Related Items of Interest:

I.  The Delphi process is quite well described in our featured article, though it has rarely been employed on other research involving chaplains. A chaplain was recently involved in a project to identify "Practices to foster physician presence and connection with patients in the clinical encounter" [by Zulman, D. M., Haverfield, M. C., Shaw, J. G., Brown-Johnson, C. G., Schwartz, R., Tierney, A. A., Zionts, D. L., Safaeinili, N., Fischer, M., Thadaney Israni, S., Asch, S. M. and Verghese, A., JAMA 323, no. 1 (January 7, 2020): 70-81]. And, a chaplain was an author/participant in "Toward competency-based curricula in patient-centered spiritual care: recommended competencies for family medicine resident education" [by Anandarajah, G., Craigie, F. Jr., Hatch, R., Kliewer, S., Marchand, L., King, D., Hobbs, R. 3rd. and Daaleman, T. P. Academic Medicine 85, no. 12 (December 2010): 1897-1904. In addition, 11 chaplains were involved in an innovative Delphi process for "Modifying the qualitative Delphi technique to develop the female soldier support model [by Roberts, D. L. and Kovacich, J., The Qualitative Report 23, no. 1 (2018), 158-167]. However, the main study out of chaplaincy using the method is:

Grossoehme, D. H. "Development of a spiritual screening tool for children and adolescents." Journal of Pastoral Care and Counseling 62, nos. 1-2 (Spring-Summer 2008): 71-85. [(Abstract:) A chaplain's ability to provide care where it is most needed depends upon some method of pastoral triage. Screening for spiritual needs of children and adolescents has been a largely neglected area. A Delphi panel developed elements to be included in a tool to screen 10-18 year olds' spiritual needs and resources. The Delphi panelists were informed of survey results of school-aged children and adolescents' opinions on spiritual issues important to them if they were hospitalized. A case study of the tool's use was conducted with a convenient sample of children and adolescents. Subsequent pilot use of the tool by five pediatric chaplains demonstrated the tool's utility in identifying patients' spiritual issues, ability to serve as a springboard to deeper discussion, and as a basis for initiating discussion of spiritual concerns with other disciplines on the healthcare team. Feedback indicates the potential clinical usefulness of this tool for hospitalized children and adolescents.]

The Delphi method was developed in the 1950s by the RAND Corporation, originally as part of an initiative to forecast the impact of technology on warfare. See more on the method from RAND at https://www.rand.org/topics/delphi-method.html. Chaplains may also be interested in a fairly recent review of the method in a Nursing thesis out of East Africa:

Shariff, N. "Utilizing the Delphi survey approach: a review." Journal of Nursing and Care 4, no. 3 (2015): 246-251. [The author addresses the history and use of the method, philosophical orientation and ethical dynamics, the process itself and its key elements, its advantages and disadvantages, and issues of validity and reliability.] -Available via open access from the Aga Khan University.]

 

II.  See also the following recent articles by

Roze des Ordons, A. L., Sinuff, T., Stelfox, H. T., Kondejewski, J. and Sinclair, S. "Spiritual distress within inpatient settings -- a scoping review of patients' and families' experiences." Journal of Pain and Symptom Management 56, no. 1 (2018): 122-145. [(Abstract:) CONTEXT: Spiritual distress contributes to patients' and families' experiences of care. OBJECTIVES: To map the literature on how seriously ill patients and their family members experience spiritual distress within inpatient settings. METHODS: Our scoping review included four databases using search terms "existential" or "spiritual" combined with "angst," "anxiety," "distress," "stress," or "anguish." We included original research describing experiences of spiritual distress among adult patients or family members within inpatient settings and instrument validation studies. Each study was screened in duplicate for inclusion, and the data from included articles were extracted. Themes were identified, and data were synthesized. RESULTS: Within the 37 articles meeting inclusion criteria, we identified six themes: conceptualizing spiritual distress (n = 2), diagnosis and prevalence (n = 7), assessment instrument development (n = 5), experiences (n = 12), associated variables (n = 12), and barriers and facilitators to clinical support (n = 5). The majority of studies focused on patients; two studies focused on family caregivers. The most common clinical settings were oncology (n = 19) and advanced disease (n = 19). Terminology to describe spiritual distress varied among studies. The prevalence of at least moderate spiritual distress in patients was 10%-63%. Spiritual distress was experienced in relation to self and others. Associated variables included demographic, physical, cognitive, and psychological factors. Barriers and facilitators were described. CONCLUSION: Patients' and families' experiences of spiritual distress in the inpatient setting are multifaceted. Important gaps in the literature include a narrow spectrum of populations, limited consideration of family caregivers, and inconsistent terminology. Research addressing these gaps may improve conceptual clarity and help clinicians better identify spiritual distress.]

Roze des Ordons, A. L., Stelfox, H. T., Sinuff, T., Grindrod-Millar, K., Smiechowski, J. and Sinclair, S. "Spiritual distress in family members of critically ill patients: perceptions and experiences." Journal of Palliative Medicine (2019): online ahead of print, 8/13/19. [(Abstract:) Background: Spiritual distress among family members of patients in the intensive care unit (ICU) has not been well characterized. This limits clinicians' understanding of how to best offer support. Objective: To explore how family members experience spiritual distress, and how it is recognized and support offered within the ICU context. Design: A qualitative study involving interviews and focus groups between May 2016 and April 2017. Setting/Subjects: Family members of ICU patients (n = 18), spiritual health practitioners (n = 10), and an interprofessional group of clinicians who work in the ICU (n = 32). Measurements: Transcribed data were analyzed using interpretive description. Results: The experience of spiritual distress was variably described by all three groups through concepts, modulators, expressions and manifestations, and ways in which spiritual distress was addressed. Concepts included loss of meaning, purpose and connection, tension in beliefs, and interconnected distress. Modulators were related to the patient and family context, the ICU context, and the relational context. Expressions and manifestations were unique and individual, involving verbal expressions of thoughts and emotions, as well as behavioral manifestations of coping. Clinical strategies for addressing spiritual distress were described through general principles, specific strategies for discussing spiritual distress, and ways in which spiritual support can be offered. Conclusions: Our study provides a rich description of how spiritual distress is experienced by family members of ICU patients, and how spiritual health practitioners and clinicians recognize spiritual distress and offer support. These findings will help inform clinician education and initiatives to better support families of critically ill patients.]

 

III.  For the 2014 report of the January 2013 consensus conference in Geneva, Switzerland, which produced a definition of spirituality, see

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 article was featured as our June 2014 Article-of-the-Month.]

 

IV.  The subject of assessment and support of families of ICU patients was considered in the context of surrogate decision-making for our June 2019 Article-of-the-Month:

Torke, A. M., Maiko, S., Watson, B. N., Ivy, S. S., Burke, E. S., Montz, K., Rush, S. A., Slaven, J. E., Kozinski, K., Axel-Adams, R. and Cottingham, A. "The Chaplain Family Project: development, feasibility, and acceptability of an intervention to improve spiritual care of family surrogates." Journal of Health Care Chaplaincy 25, no. 4 (October-December 2019): 147-170. [(Abstract:) In the Intensive Care Unit (ICU), family members experience psychological and spiritual distress as they cope with fear, grief, and medical decisions for patients. The study team developed and pilot tested a semistructured chaplain intervention that included proactive contact and spiritual assessment, interventions, and documentation. An interdisciplinary team developed the intervention, the Spiritual Care Assessment and Intervention (SCAI) Framework. Three chaplains delivered the intervention to surrogates in two ICUs. There were 25 of 73 eligible patient/surrogate dyads enrolled. Surrogates had a mean age of 57.6, were 84% female and 32% African American. The majority (84%) were Protestant. All received at least one chaplain visit and 19 received three visits. All agreed they felt supported by the chaplains, and qualitative comments showed spiritual and emotional support were valued. A semistructured spiritual care intervention for ICU surrogates is feasible and acceptable. Future work is needed to demonstrate that the intervention improves outcomes for surrogates and patients.]

 

 

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