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June 2019 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

 

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 (2019): online ahead of print, 4/30/19.

[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 selection is another product of the Daniel F. Evans Center for Spiritual and Religious Values in Healthcare and Indiana University Health [--see Items of Related Interest, §I, below], piloting a semi-structured Spiritual Care Assessment and Intervention (SCAI) framework geared toward reproducible research. The Chaplain Family Project team sought to fill a gap in the literature regarding intervention to help family members of Intensive Care Unit patients as they cope with fear, grief, and medical decisions. "Supporting families of seriously ill patients is important because there is evidence family members of a person facing serious illness have high distress, including high levels of depression, anxiety, and posttraumatic stress..., [and the] patient's illness may also raise questions about faith, values, and meaning that are frequently important to family members as well as patients" [MS p. 4].

The team was concerned about common logistical difficulties of chaplains meeting family members and, once contact was made, about developing a strategy for interaction that "balance[d] the open, responsive approach that is core to the practice of spiritual care with an intervention that was structured enough to be reproduced in future studies with a high degree of fidelity" [MS p. 17]. The researchers also sought to create a process that could "explicitly connect the spiritual assessment tool to spiritual care" [MS p. 7]. Their proposed SCAI framework then consisted of four components:

1) "Proactive contact with surrogate decision makers" [MS p. 5]
"Chaplains contacted family members by phone or at the bedside. ...There were three visit types: (a) Initial visits to conduct a comprehensive spiritual assessment of strengths and distress using the four dimensions in the framework and to address these concerns through specific spiritual care interventions; (b) follow-up visits to address spiritual distress and strengths identified in previous visits or to identify new concerns as the patient's illness unfolds and the surrogate continues to cope with that illness in the context of his or her own life; and (c) bereavement visits if the patient died during the hospital stay." [MS p. 6]

2) "A semi-structured spiritual assessment" [MS p. 5]
Through a review of published assessments, the team identified four dimensions for their tool: Meaning and Purpose, Relationship, Transcendence and Peace, and Self-Worth. Then for each dimension, a set of "core questions" [MS p. 7] was devised to guide but not constrict the chaplain. A full list of questions is given in a table [--see MS p. 13].

3) "Delivery of spiritual care" [MS p. 5]
In order to connect the assessment directly with chaplaincy action, the team additionally developed listings of "specific spiritual interventions" [MS p. 7 and Table 3, MS p. 14] and of observed effects of the spiritual care [--see MS p. 8 and Table 5, MS p. 16].

4) "Documentation of each interaction in a comprehensive electronic note" [MS p. 5]
"In addition to entering a standard chaplain note in the electronic medical record (EMR), the chaplain also documented the visit in a study form using...a secure, customizable, online database. Chaplains could also record comments about their use of the intervention, overall impressions of the surrogate, and any important social or familial dynamics that were encountered." [MS p. 8]

Family members of 25 patients were enrolled (out of an original 76 screened and 73 found to be eligible). Follow-up interviews 6-8 weeks after discharge were possible for 20 of the cases. Among the results:

  • "...[p]roactive contact led to all surrogates receiving at least one encounter and most receiving the three planned visits" [MS p. 15].

  • "There were a total of 80 visits for the 25 surrogates. Visits were conducted by phone 40.0% of the time..." [MS pp. 10-11]. The authors observe, "The chaplains' ability to provide multiple spiritual care visits to families was greatly assisted by the use of phone visits..." [MS p. 15]

  • Initial visits, with a "median duration was 40 minutes (range 3-130 minutes)" [MS p. 12] covered all four dimensions of the spiritual assessment 90% of the time. "The [assessment] question used least was 'How do your values and beliefs help you make decisions?' (7.5% of visits) and the most common question was 'How are you taking care of yourself right now?' (36.3% of visits)" [MS p. 12].

  • Over the 80 total visits, "[t]he most common interventions were Active Listening (87.5%), Emotional Support (81.3%), Non-Anxious Attending (73.8%), and Prayer (57.5%)" [MS p. 12]. Of note also: the least used interventions included Referral to Member(s) of the Interdisciplinary Team, which was used only twice; Advance Care Planning, Confession/Amends, Crisis/Trauma Care, Provision of Religious/Spiritual Resources, and Referral to Other Clergy/Spiritual Support, which all occurred only once; and Ritual or Sacrament was not used at all. [See Table 3, MS p. 14]

  • Regarding the effects of spiritual care observed by the chaplains, Demonstrates Awareness of Need for Self-Care was noted in 48.3% of the 80 total visits, and the researchers comment that this need in the Self-Worth dimension "may be particularly important for family members of seriously ill patients" [MS p. 12]. Other frequently observed effects included: Reports a Greater Sense of Community (51.8%) and Recognizes Impact of His or Her Behavior on Others (24.1%), in the Relationships dimension; Feels a Connection to the Divine (35.9%), Expresses a Greater Sense of Peace or Acceptance (30.1%), and Increases Practices that Foster Connection with the Divine (28.2%), in the Transcendence and Peace dimension; Balances Self-Care with Care and Concern for Others (33.7%), in the Self-Worth dimension; and Reaches Greater Clarity about the Meaning and Purpose of Life (31.1%) and Reaches a Clear Understanding of How Values and Beliefs Help or Hinder Coping (25.2%)*, in the Meaning and Purpose dimension. [See Table 5, MS p. 16.]

  • Feedback from the follow-up interviews showed that "[s]urrogates rated the project very highly with all indicating they felt supported by the chaplains and would recommend them to other family members" [MS p. 12]. "...[M]ost report[ed] a sense of 'lifting burden,' 'comfort,' or 'peace'"; and "[w]hen asked what could be improved about the Chaplain Family Project, 19 respondents said 'nothing'" [MS p. 14]. There was, however, expressed desire for "greater availability of the chaplain" and that "the intervention be available to more family members" [MS p. 14].

  • "There were two criticisms of the study[:] one [family member] commented the initial explanation of the study was burdensome and another commented the study surveys were intrusive" [MS p. 14].

  • "Chaplains who participated in the project reflected that the SCAI framework assisted them in making sure important dimensions of spirituality were addressed during each visit. The chaplains felt the framework was open-ended enough that they could be uniquely responsive to the concerns of each family member" [MS p. 16]. However, "[t]he major drawback observed by the chaplains was the length of the electronic documentation for the study" [MS p. 15].

The authors conclude that the SCAI framework is "feasible in the ICU setting" for chaplains and "acceptable to family members" [MS pp. 15 and 18]. Nevertheless, they note that the documentation process should be refined to be better incorporated into routine chaplaincy practice. And, they appropriately see this research as a stepping-stone to further investigation. "We hope future research will test whether this approach can be delivered with high fidelity to protocol by using methods of direct observation of the visits and whether or not the intervention has an effect on important outcomes such as surrogate well-being or decision making for the patient" [MS p. 17]. Limits, like the relatively small sample size, are appropriately acknowledged [--see pp. 17-18]. This reader would additionally have preferred even more about how chaplains affected surrogate decision-making, since there is attention given here to identifying the decision-maker(s).

The authors' focus on reproducibility seems exceptional. "An important aspect of such studies is ensuring the intervention is reproducible" [MS p. 17]. It is to that particular end that the project was "structured enough" [MS p. 17] with questions for each dimension of the spiritual assessment. The authors comment:

The desire for scientific rigor...pushes the field of chaplaincy in the direction of greater structure. This is in tension with certain core aspects of chaplain practice, including deep responsiveness to the spiritual needs of each unique individual.... ...Some chaplains have expressed concern that prescribed questions may in fact interfere with good spiritual care.... The team sought to balance the need for greater structure with the flexibility of authentic responsiveness by designing a semistructured approach to spiritual care.... [MS p. 5]
The documentation process was also highly formalized while still allowing for some free-text input that proved valuable, especially for the Chaplain Observed Effects of Spiritual Care data [Table 5, MS p. 15].

In addition, the plan for proactive scheduling of chaplaincy contact with ICU families is remarkable, inspired by the recognition that families often have difficulty connecting with clinicians [--see MS p. 3]. The protocol suggests the level of effort required by chaplains to make this contact.

After enrollment, the chaplain contacted the surrogate decision maker either at the bedside or by phone. Phone attempts were made up to three times daily for three days. Efforts were made to arrange a time to meet with the surrogate within 24 hours of enrollment whenever possible. ... The chaplain attempted to schedule meetings with the surrogate every two to three days (or daily if the chaplain believed this would be beneficial to the surrogate), for a total of at least two additional follow-up visits, and then determined the need for additional follow-up visits based on individual needs. [MS p. 9]
While chaplains might come to meet these family members in the course of an ICU stay and especially at critical events, the idea of devoting significant effort to proactive contact seems a worthy challenge to chaplaincy departments.

The bibliography is quite extensive at 50 references, though there are no citations beyond 2016. An appended chart lining out the dimensions of various spiritual care frameworks is helpful, as are all of the tables, providing a window into the details of the data.


*The frequency of the observed effect of Reaches a Clear Understanding of How Values and Beliefs Help or Hinder Coping is given in Table 5 [MS p. 16] as 25.2%, but is given in the article's text [MS p. 12] -- apparently incorrectly in the pre-print version -- as 31.3%.


 

Suggestions for Use of the Article for Student Discussion: 

This is a very readable article that should be accessible to any level of CPE students and may be a good introduction for many to idea of methodological structure in research. It may help some chaplains envision the requirements of participating in studies. Discussion could begin with a general question of students' involvement with families of ICU patients, and when that contact tends to occur during the hospitalization. What does the group think of proactively scheduling contact and phoning families? Looking at the SCAI framework overall, what stands out to students beyond what they may already do with families? Some time could be spent on the Assessment component and the questions paired with each domain, using the listing in Table 2 [MS p. 13]. Which of the possible questions most appeal to the group, and is this in sync with the use of the questions by the three chaplains who were involved with the research? The finding might be noted that "[c]haplains who participated in the project reflected that the SCAI framework assisted them in making sure important dimensions of spirituality were addressed during each visit" [MS p. 16]. Are the students open to such prompting, or are they concerned about it being somehow constricting to them? This research proposes, in its course, lists of possible interventions [--see Table 3, MS p. 14] and potential effects on family members [--see Table 5, MS p. 16], which could both be talked about in their particulars. Finally, in their typical practice of assessment, are students attentive to strengths as well as to spiritual distress [--see pp. 6, 7, 13, and 16]?


 

Related Items of Interest:

I.  The Daniel F. Evans Center for Spiritual and Religious Values in Healthcare, at Indiana University Health (http://evanscenterindiana.org), was founded in 1996 to "promote and provide resources for initiatives, programs and research that integrate the values of compassion, whole person care, ethical practice and spiritual care services into all patient care, community wellness and staff development activities" [--from the Center's home page]. The lead author of this month's article, Alexia Torke, MD, is the Center's Director; and Saneta Maiko, PhD, is the Center's Chaplain Researcher. We featured another article (ahead of print) from the Center as our December 2018 Article-of-the-Month:

Maiko, S. M., Ivy, S., Watson, B. N., Montz, K. and Torke, A. M. "Spiritual and religious coping of medical decision makers for hospitalized older adult patients." Journal of Palliative Medicine 22, no. 4 (April 2019): 385-392. [(Abstract): BACKGROUND: Critically ill adult patients who face medical decisions often delegate others to make important decisions. Those who are authorized to make such decisions are typically family members, friends, or legally authorized representatives, often referred to as surrogates. Making medical decisions on behalf of others produces emotional distress. Spirituality and/or religion provide significant assistance to cope with this distress. We designed this study to assess the role of surrogates' spirituality and religion (S/R) coping resources during and after making medical decisions on behalf of critically ill patients. The study's aim was to understand the role that S/R resources play in coping with the lived experiences and challenges of being a surrogate. METHODS: Semistructured interviews were conducted with 46 surrogates by trained interviewers. These were audio-recorded and transcribed by research staff. Three investigators conducted a thematic analysis of the transcribed interviews. The codes from inter-rater findings were analyzed, and comparisons were made to ensure consistency. RESULTS: The majority (67%) of surrogates endorsed belief in God and a personal practice of religion. Five themes emerged in this study. Personal prayer was demonstrated as the most important coping resource among surrogates who were religious. Trusting in God to be in charge or to provide guidance was also commonly expressed. Supportive relationships from family, friends, and coworkers emerged as a coping resource for all surrogates. Religious and nonreligious surrogates endorsed coping strategies such as painting, coloring, silent reflection, music, recreation, and reading. Some surrogates also shared personal experiences that were transformative as they cared for their ill patients. CONCLUSION: We conclude that surrogates use several S/R and other resources to cope with stress when making decisions for critically ill adult patients. The coping resources identified in this study may guide professional chaplains and other care providers to design a patient-based and outcome-oriented intervention to reduce surrogate stress, improve communication, increase patient and surrogate satisfaction, and increase surrogate integration in patient care. We recommend ensuring that surrogates have S/R resources actively engaged in making medical decisions. Chaplains should be involved before, during, and after medical decision making to assess and address surrogate stress. An interventional research-design project to assess the effect of spiritual care on surrogate coping before, during, and after medical decision making is also recommended.]

Note that Item of Related Interest §II of the December 2018 feature references broader research about the experience and perspective of surrogate decision-makers, including our June 2010 Article-of-the-Month: Boyd, E. A., Lo, B., Evans, L. R., Malvar, G., Apatira, L., Luce, J. M. and White, D. B., "'It's not just what the doctor tells me': factors that influence surrogate decision-makers' perceptions of prognosis," Critical Care Medicine 38, no. 5 (May 2010): 1270-1275.

 

II.  Readers may be interested in the ClinicalTrials.gov record of additional research connected to the Chaplain Family Project, at https://clinicaltrials.gov/ct2/show/NCT03702634.

 

III.  Our authors make special mention of the Spiritual Assessment and Intervention Model (AIM) [--see MS pp. 7 and 17] but cite only a 2015 study regarding it. A more recent study was featured as our August 2017 Article-of-the-Month:

Kestenbaum, A., Shields, M., James, J., Hocker, W., Morgan, S., Karve, S., Rabow, M. W. and Dunn, L. B. "What impact do chaplains have? A pilot study of Spiritual AIM for advanced cancer patients in outpatient palliative care." Journal of Pain & Symptom Management 54, no. 5 (November 2017): 707-714. [(Abstract:) CONTEXT: Spiritual care is integral to quality palliative care. Although chaplains are uniquely trained to provide spiritual care, studies evaluating chaplains' work in palliative care are scarce. OBJECTIVES: The goals of this pre-post study, conducted among patients with advanced cancer receiving outpatient palliative care, were to evaluate the feasibility and acceptability of chaplain-delivered spiritual care, utilizing the Spiritual Assessment and Intervention Model ("Spiritual AIM"), and to gather pilot data on Spiritual AIM's effects on spiritual well-being, religious and cancer-specific coping, and physical and psychological symptoms. METHODS: Patients with advanced cancer (N = 31) who were receiving outpatient palliative care were assigned based on chaplains' and patients' outpatient schedules, to one of three professional chaplains for three individual Spiritual AIM sessions, conducted over the course of approximately six to eight weeks. Patients completed the following measures at baseline and post-intervention: Edmonton Symptom Assessment Scale, Steinhauser Spirituality, Brief RCOPE, Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp-12), Mini-Mental Adjustment to Cancer (Mini-MAC), Patient Dignity Inventory, Center for Epidemiological Studies-Depression (10 items), and Spielberger State Anxiety Inventory. RESULTS: From baseline to post-Spiritual AIM, significant increases were found on the FACIT-Sp-12 Faith subscale, the Mini-MAC Fighting Spirit subscale, and Mini-MAC Adaptive Coping factor. Two trends were observed, i.e., an increase in Positive religious coping on the Brief RCOPE and an increase in Fatalism (a subscale of the Mini-MAC). CONCLUSION: Spiritual AIM, a brief chaplain-led intervention, holds potential to address spiritual needs and religious and general coping in patients with serious illnesses.]

 

IV.  Our featured research used REDCap (Research Electronic Data Capture) to log data. For more on REDCap, see www.project-redcap.org. Other recent examples of chaplaincy research using REDCap are:

Atkinson, H. G., Fleenor, D., Lerner, S. M., Poliandro, E. and Truglio, J. "Teaching third-year medical students to address patients' spiritual needs in the surgery/anesthesiology clerkship." MedEdPORTAL: The Journal of Teaching and Learning Resources (December 14, 2018): 14:10784 [electronic journal article designation]; 13pp. [INTRODUCTION: Despite many patients wanting physicians to inquire about their religious/spiritual beliefs, most physicians do not make such inquiries. Among physicians who do, surgeons are less likely than family and general practitioners and psychiatrists to do so. METHODS: To address this gap, we developed a 60-minute curriculum that follows the Kolb cycle of experiential learning for third-year medical students on their surgery/anesthesiology clerkship. The session includes definitions of religion/spirituality, an overview of the literature on spirituality in surgery, a review of the FICA Spiritual History Tool, discussion of the role of the chaplain and the process of initiating a chaplain consult, and three cases regarding the spiritual needs of surgical patients. RESULTS: In total, 165 students participated in 10 sessions over 13 months. Of these, 120 students (73%) provided short-term feedback. Overall, 82% rated the session above average or excellent, and 72% stated the session was very relevant to patient care. To improve the session, students recommended assigning key readings, discussing more cases, role-playing various scenarios, inviting patients to speak, practicing mock interviews, and allowing for more self-reflection and discussion. Long-term feedback was provided by 105 students (64%) and indicated that the spirituality session impacted their attitudes about the role of religion/spirituality in medicine and their behaviors with patients. DISCUSSION: We have designed a successful session on spirituality for third-year students on their surgery/anesthesiology clerkship. Students reported it to be a positive addition to the curriculum. The session can be modified for other surgical subspecialties and specialties outside of surgery.] [This article is available online from the journal at https://www.mededportal.org/publication/10784.]

Kittelson, S., Scarton, L., Barker, P., Hauser, J., O'Mahony, S., Rabow, M., Delgado Guay, M., Quest, T. E., Emanuel, L., Fitchett, G., Handzo, G., Yao, Y., Chochinov, H. M. and Wilkie, D. "Dignity Therapy led by nurses or chaplains for elderly cancer palliative care outpatients: protocol for a randomized controlled trial." JMIR Research Protocols 8, no. 4 (April 17, 2019): e12213 [electronic journal article designation]. [(Abstract:) BACKGROUND: Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity therapy (DT) has clear feasibility but inconsistent efficacy. DT could be led by nurses or chaplains, the 2 disciplines within palliative care that may be most available to provide this intervention; however, it remains unclear how best it can work in real-life settings. OBJECTIVE: We propose a randomized clinical trial whose aims are to (1) compare groups receiving usual palliative care for elderly patients with cancer or usual palliative care with DT for effects on (a) patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness); and (b) processes of delivering palliative spiritual care services (satisfaction and unmet spiritual needs); and (2) explore the influence of physical symptoms and spiritual distress on the outcome effects (dignity impact and existential tasks) of usual palliative care and nurse- or chaplain-led DT. We hypothesize that, controlling for pretest scores, each of the DT groups will have higher scores on the dignity impact and existential task measures than the usual care group; each of the DT groups will have better peaceful awareness and treatment preference more consistent with their cancer prognosis than the usual care group. We also hypothesize that physical symptoms and spiritual distress will significantly affect intervention effects. METHODS: We are conducting a 3-arm, pre- and posttest, randomized, controlled 4-step, stepped-wedge design to compare the effects of usual outpatient palliative care and usual outpatient palliative care along with either nurse- or chaplain-led DT on patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness). We will include 560 elderly patients with cancer from 6 outpatient palliative care services across the United States. Using multilevel analysis with site, provider (nurse, chaplain), and time (step) included in the model, we will compare usual care and DT groups for effects on patient outcomes and spiritual care processes and determine the moderating effects of physical symptoms and spiritual distress. RESULTS: The funding was obtained in 2016, with participant enrollment starting in 2017. Results are expected in 2021. CONCLUSIONS: This rigorous trial of DT will constitute a landmark step in palliative care and spiritual health services research for elderly cancer patients.] [This article is available online from the journal at www.researchprotocols.org/2019/4/e12213 and from the National Library of Medicine at www.ncbi.nlm.nih.gov/pmc/articles/PMC6492061.]

 

V.  A brief video of Dr. Alexia M. Torke speaking about the Chaplain Family Project is available from the Regenstrief Institute, which has various associations with Indiana University. The video is also directly available on YouTube at https://youtu.be/eBAeOm74Ifs.

 

VI.  The authors of this month's article place a high value on the reproducibility of the research. The present Article-of-the-Month Editor offered a comment on the importance of replication in the Winter 2016 issue of the old Research Network Newsletter (Item #2), in light of work going on in the field of psychology.

 

 


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