June 2015 Article of the Month
This month's article selection is by Chaplain John Ehman,
University of Pennsylvania Medical Center-Penn Presbyterian, Philadelphia PA.
Further report of the project covered here is highlighted as our February 2017 Article-of-the-Month.
Piderman, K. M., Breitkopf, C. R., Jenkins, S. M., Lovejoy, L. A., Dulohery, Y. M., Marek, D. V., Durland, H. L., Head, D. L., Swanson, S. W., Hogg, J. T., Evans, J. L., Jorgenson, S. E., Bunkowski, L. J., Jones, K. L., Euerle, T. T., Kwete, G. M., Miller, K. A., Morris, J. R., Yoder, T. J., Lapid, M. I. and Jatoi, A. "The feasibility and educational value of Hear My Voice, a chaplain-led spiritual life review process for patients with brain cancers and progressive neurologic conditions." Journal of Cancer Education 30, no. 2 (June 2015): 209-212.
Piderman, K. M., Breitkopf, C. R., Jenkins, S. M., Euerle, T. T., Lovejoy, L. A., Kwete, G. M. and Jatoi, A. "A chaplain-led spiritual life review pilot study for patients with brain cancers and other degenerative neurologic diseases." Rambam Maimonides Medical Journal 6, no. 2 (April 2015): e0015 [electronic journal article designation].
[Note: The Rambam Maimonides Medical Journal article is freely available online from the journal.]
SUMMARY and COMMENT: The pair of articles this month, by a team at the Mayo Clinic (Rochester, MN), are reports from two early phases of an ongoing line of research into a chaplain-led spiritual life review for seriously ill patients, funded primarily by an anonymous benefactor but also by several small internal grants. They focus on individuals with brain cancers and degenerative neurologic diseases, though subsequent phases of the overall research program have been expanded to include other end-stage and palliative care patients [--from a personal communication to the Network by the lead author]. The Rambam Maimonides Medical Journal (RMMJ) article represents a slightly later phase of study than the Journal of Cancer Education (JCE) article. Together, they offer a quite full picture of a potentially fruitful chaplaincy intervention and a methodology to explore it.
Regarding the JCE article, "The feasibility and educational value of Hear My Voice…": Twenty-five patients were enrolled between July 2012 - August 2013 and given "an opportunity to review, evaluate, and discuss significant aspects of their spirituality with a board-certified chaplain, so that a thorough record of this vital part of their personhood could be preserved for their loved ones and medical team" [JCE p. 209]. The chaplain-led interviews of 1-2 hours, usually but not always in a single session, was informed by a guide based upon the FICA spiritual assessment [--see Items of Related Interest, §I (below)], Dignity Therapy [--see Items of Related Interest, §II (below)], and "research on spiritual coping and spiritual struggle" [--see Items of Related Interest, §III (below)]. The guide is outlined fully in a table, covering the themes of Faith, Importance, Community, Activity, Call, Contributions, Changes, Challenges, Communication, and Conclusion [JCE p. 210]. The interviews were then used by the researchers to draft a Spiritual Legacy Document (SLD) ranging from 10-30 pages, which patients could edit before it was bound into an 8"x8" book. Patients could order up to 25 copies at no charge. Participants also completed several established measures at 1 and 3 months after receiving their SLDs. One additional aspect of the project: patients nominated a secondary participant, whom they trusted with spiritual matters, to enroll in a measures-only part of the study, but the person had the option of being present and supportive during the patient interviews.
Among the preliminary results: The methodology appeared to work without difficulty from the interviewers' perspective. The chaplains who served as interviewers indicated, though, that they were themselves affected by it, commenting that the experience had "informed their daily ministry and spiritual assessment practices" and that "the interview guide provided a rich framework developing a holistic, patient-centered plan of care" --which the authors state was "an unexpected benefit of the project" [JCE p. 211]. In terms of participants’ experience:
Many patients spontaneously reported their appreciation for the opportunity to participate in this pilot project, indicating that it helped them come to peace with "unfinished business," value themselves in a new way, feel that they still had something to contribute to others, and prepare for the future. Additionally, several commented that the non-dogmatic approach to spirituality made the study appealing to them. Secondary participants also affirmed the process as very meaningful and were appreciative of the focus on important matters that it provided for their loved ones. All expressed gratitude for the opportunity to receive multiple copies of the SLD booklet, so that it could be shared with others, as a lasting legacy.
No analysis of the interview content and of data from the measures appears in this preliminary report. The authors suggest only that this early phase of the research demonstrated the feasibility of the intervention and the "potential to provide important data related to the spirituality of these patients and their support persons," though they note especially the "unexpected educational benefit to the investigators in ways that may promote clinical effectiveness and personal growth" [JCE p. 212].
Regarding the RMMJ article, "Chaplain-led spiritual life review…": This somewhat later phase of the overall project includes a few more participants and builds upon the picture of the project offered by the JCE article. For one, it reports some observations about the quantitative measures (i.e., the commonly used FACIT-Sp-12 and Brief RCOPE, and the LASA [Linear Analog Self-Assessment]):
Though participants had a variety of belief systems and were in the midst of challenging disease processes, enrollment data demonstrated that most patients had relatively high levels of spiritual well-being and quality of life, and relatively low levels of spiritual distress. Follow-up data indicated that most patients either maintained or improved in these areas. ...In the results of this study, it appears that doing well spiritually does not preclude spiritual struggle. [RMMJ p. 8].
Specific data on improvement from baseline are given in a table and described [RMMJ pp. 3-4].
The authors also summarize two cases from the study in light of a spiritual development model by Kenneth I. Pargament, et al. that works from the concepts of discovery, conservation, and transformation [--see Items of Related Interest, §IV (below)].
The two summarized cases demonstrate the feasibility of using Pargament’s framework to identify experiences related to spiritual development. The investigators intend to use this model in their qualitative analysis of the interview data. The cases also highlight specific ways that adversity challenged the patient’s spiritual perspective and promoted spiritual change. In the two cases presented, this change was positive and enriching for the patients and their loved ones. It is possible that reflecting on this change during the interview was beneficial and contributed to the results noted above.
In an elaboration on the point raised by the JCE article, the RMMJ article contains a table of quotes from a handful of participants showing their positive response to the study. [RMMJ p. 7].
Throughout, the authors note opportunities for further study.
A comment on the articles together: One of the striking qualities of these articles is the authors' appreciation for how this research, as an application of the intervention in question, appears to have been helpful to all involved. Patients "expressed their gratitude for the opportunity to reflect on their lives and to integrate both positive and challenging experiences related to their diagnosis and disease progression" and "reported valuing the opportunity to preserve significant aspects of their spiritual journey for their loved ones and others, and hoped that their words would influence them in positive ways" [RMMJ p. 6]. After all, patients not only had the experience of the "'careful listening' of the interviewer[s]" [RMMJ p. 6] but were provided with a concrete product of their time and effort: the Spiritual Legacy Document. Each SLD also required a significant time investment from members of the research team …and had a profound effect on them as well.
Despite the time expenditure, the process seemed to have rewarded those involved in very positive ways. For example, several of the medical students commented on their growing insight into the importance of spirituality to patients and the privilege of learning about this intimate aspect of people in the context of challenging medical conditions. They indicated that their experience would guide them as they engaged in clinical work. The chaplain residents spoke of the editing as formative and leading to a greater appreciation of the experience of spirituality over a life time. Some investigators stated their intention to reflect on and document their own spiritual journey and that of loved ones. [JCE p. 211].
The articles, then, implicitly raise for chaplain readers the dynamic of research as intervention, in and of itself, not only for participants enrolled in a study but for the investigators.
Note: Eight of the co-authors of the JCE article and two of those of the RMMJ article are from the Department of Chaplain Services at the Mayo Clinic, where Dr. Piderman is the Coordinator for Research in addition to being an Assistant Professor in Psychiatry.
Suggestions for the Use of the Article for Student Discussion:
A 2008 study of 30,995 chaplains' visits from the greater New York City area showed that Life Review was used in 11.7% of all visits and in over a fifth of visits with patients who were dying or in rehabilitation [--see: Handzo, G. F., et al., "What do chaplains really do? II. Interventions in the New York Chaplaincy Study," Journal of Health Care Chaplaincy 14, no. 1 (2008): 39-56]. With this being such a common intervention, discussion of our featured articles could begin with a check of students' sense of using life review in general and of how that may stand in relation to the intensive life review undertaken in our featured articles. What is the spectrum of options for this intervention (relatively brief to extensive)? Could students imagine being involved with the creation of a legacy document, and what circumstances might call for that? Looking at the guideline for the spiritual legacy interview given in Table 1 of the JCE article [p. 210], what do students think of the categories and sample questions? (Note that this guideline was not intended to override the pastoral practice of following the patients' lead, so some thought about the role of questions per se in any pastoral interaction may be in order.) Another topic may be the discovery-conservation-transformation model of spiritual development used to analyze the two cases presented in the RMMJ article [pp. 5-6]. The two cases themselves could spark rich discussion. Also, what do students make of the highly positive spontaneous comments by patients in the study, especially in the quotes from Table 2 of the RMMJ article [p. 7]? Finally, what do students make of the statement, "In the results of this study, it appears that doing well spiritually does not preclude spiritual struggle" [RMMJ p. 7]? This might lead to interest in a subsequent conversation about spiritual struggle.
Related Items of Interest:
I. For more on the FICA spiritual assessment, see the August 2010 Article-of-the-Month and the FICA page from the George Washing Institute for Spirituality and Health (www.GWISH.org).
II. Dignity Therapy was subject of our April 2015 Article-of-the-Month. A key element is the preparation of a legacy document.
III. Our authors cite research by Kenneth I. Pargament, Harold G. Koenig, and Lisa M. Perez: "The many methods of religious coping: development and initial validation of the RCOPE" [Journal of Clinical Psychology 56, no. 4 (April 2000): 519-543]. The present research specifically used what the authors call the Brief Religious Coping Scale in the JCE article but which is commonly known as the Brief RCOPE. For more on the Brief RCOPE, see:
For a tabular summary of religious coping methods and key religious functions upon which the items of the Brief RCOPE are based, click HERE.
Pargament, K. I., Smith, B. W., Koenig, H. G. and Perez, L. "Patterns of positive and negative religious coping with major life stressors." Journal for the Scientific Study of Religion 37, no. 4 (December 1998): 710-724. [(Abstract:) This study attempted to identify positive and negative patterns of religious coping methods, develop a brief measure of these religious coping patterns, and examine their implications for health and adjustment. Through exploratory and confirmatory factor analyses, positive and negative religious coping patterns were identified in samples of people coping with the Oklahoma City bombing, college students coping with major life stressors, and elderly hospitalized patients coping with serious medical illnesses. A 14-item measure of positive and negative patterns of religious coping methods (Brief RCOPE) was constructed. The positive pattern consisted of religious forgiveness, seeking spiritual support, collaborative religious coping, spiritual connection, religious purification, and benevolent religious reappraisal. The negative pattern was defined by spiritual discontent, punishing God reappraisals, interpersonal religious discontent, demonic reappraisal, and reappraisal of God's powers. As predicted, people made more use of the positive than the negative religious coping methods. Furthermore, the two patterns had different implications for health and adjustment. The Brief RCOPE offers an efficient, theoretically meaningful way to integrate religious dimensions into models and studies of stress, coping, and health.
Also note, however, that the JCE article cites the use of the Brief COPE Inventory. That measure is different from the Brief RCOPE and is detailed in the following article:
Carver, C. S. " You want to measure coping but your protocol' too long: consider the Brief COPE ." International Journal of Behavioral Medicine 4, no. 1 (March 1997): 92-100. [(Abstract:) Studies of coping in applied settings often confront the need to minimize time demands on participants. The problem of participant response burden is exacerbated further by the fact that these studies typically are designed to test multiple hypotheses with the same sample, a strategy that entails the use of many time-consuming measures. Such research would benefit from a brief measure of coping assessing several responses known to be relevant to effective and ineffective coping. This article presents such a brief form of a previously published measure called the COPE inventory (Carver, Scheier, & Wcintraub, 1989), which has proven to be useful in health-related research. The Brief COPE omits two scales of the full COPE, reduces others to two items per scale, and adds one scale. Psychometric properties of the Brief COPE arc reported, derived from a sample of adults participating in a study of the process of recovery after Hurricane Andrew.]
IV. Regarding the spiritual development model by Kenneth I. Pargament, et al., turning on the concepts of discovery, conservation, and transformation, both of our featured articles reference Pargament, K. I., Murray-Swank, N. A. and Mahoney, A., "Problem and solution: the spiritual dimension of clergy sexual abuse and its impact on survivors," Journal of Child Sexual Abuse 17, nos. 3-4 (2008): 397-420. However, chaplains may also find very helpful an exposition of the model in:
Pargament, K. I. "Searching for the sacred: toward a nonreductionistic theory of spirituality." In Pargament, K. I., Exline, J. J. and Jones, J. W., eds. APA Handbook of Psychology, Religion, and Spirituality. Volume 1: Context, Theory, and Research. Washington, DC: American Psychological Association, 2013, pp. 257–274. [See esp. pp. 260-266 for a fairly full explanation and discussion of the model, including a useful diagram on p. 260.]
V. A recent review from the team at the Mayo Clinic may be of special interest:
Piderman, K. M., Kung, S., Jenkins, S. M., Euerle, T. T., Yoder, T. J., Kwete, G. M. and Lapid, M. I. "Respecting the spiritual side of advanced cancer care: a systematic review." Current Oncology Reports 17, no. 2 (February 2015): 6 [electronic journal article designation]. [Spirituality is among the resources that many turn to as they deal with a diagnosis of advanced cancer. Researchers have made much progress in exploring and understanding spirituality's complex and multifaceted role in the midst of metastatic disease. As a result, spirituality is seen as an important aspect of a holistic and respectful approach to clinical care for patients and their loved ones. In this article, we provide a systematic review of the literature related to the interface between spirituality and metastatic cancer. We included articles published from January 2013 to June 2014. Twenty-two articles were reviewed, consisting of clinical intervention trials, association studies, surveys, qualitative studies, and review articles. The articles discussed efforts to improve patients' spiritual well-being, with relevant measurement scales; the associations of spirituality and end of life treatment practices; and efforts to better understand and meet the spiritual needs of patients and caregivers.] [The article is 9 pages.]
VI. The following pair of articles address spiritual needs of neuro-oncology patients from two perspectives:
Nixon, A. and Narayanasamy, A. "The spiritual needs of neuro-oncology patients from patients' perspective." Journal of Clinical Nursing 19, nos. 15-16 (August 2015): 2259-2370. [(Abstract:) AIMS: This study aimed to identify the spiritual needs of neuro-oncology patients from a patient perspective and how nurses currently support patients with spiritual needs. BACKGROUND: Spiritual needs of cancer patients should be assessed and discussed by healthcare professionals from diagnosis. Nurses should assess and support neuro-oncology patients with their spiritual needs during their hospital stay. DESIGN: Qualitative research. METHODS: Data were collected through a Critical Incident Technique questionnaire from neuro-oncology patients and were subjected to thematic content analysis. RESULTS: Some patients with brain tumours do report spiritual needs during their hospital stay and some of these needs are not met by nurses. CONCLUSIONS: There is clearly a need for healthcare professionals to provide spiritual care for neuro-oncology patients and their relatives. Further research is required to explore how effective nurses are at delivering spiritual care and if nurses are the most appropriate professionals to support neuro-oncology patients with spiritual care. RELEVANCE TO CLINICAL PRACTICE: The study illuminates that some neuro-oncology patients' have spiritual needs that could be met by nurses. Spiritual needs include supportive family relationships, emotional support, loneliness, religious needs, need to talk, reassurance, anxiety, solitude, denial, plans for the future, thoughts about meaning of life, end of life decisions and discussion of beliefs. The implications of the findings of this study are that nurses need to be aware and respond to these spiritual needs.]
Nixon, A. V., Narayanasamy, A. and Penny, V. "An investigation into the spiritual needs of neuro-oncology patients from a nurse perspective." BMC Nursing 12 (2013): 2 [electronic journal article designation]. [(Abstract:) BACKGROUND: Spiritual needs of cancer patients should be assessed and discussed by healthcare professionals. Neurosurgical nurses need to be able to assess and support neuro-oncology patients with their spiritual needs from diagnosis and throughout their hospital stay. METHODS: Data were collected through questionnaires using a Critical Incident Technique (CIT) from neurosurgical nurses, findings were analysed using thematic analysis. RESULTS: Nurses reported some awareness of their patients' spiritual needs during their stay on neurosurgical units although some used expressions approximating what could be described as spiritual needs. Patients' spiritual needs were identified as: need to talk about spiritual concerns, showing sensitivity to patients' emotions, responding to religious needs; and relatives' spiritual needs included: supporting them with end of life decisions, supporting them when feeling being lost and unbalanced, encouraging exploration of meaning of life, and providing space, time and privacy to talk. Participants appeared largely to be in tune with their patients' spiritual needs and reported that they recognised effective strategies to meet their patients' and relatives' spiritual needs. However, the findings also suggest that they don't always feel prepared to offer spiritual support for neuro-oncology patients. CONCLUSIONS: There is a need for healthcare professionals to provide spiritual care for neuro-oncology patients and their relatives. Although strategies were identified that nurses can use to support patients with spiritual needs further research is required to explore how effective nurses are at delivering spiritual care and if nurses are the most appropriate professionals to support neuro-oncology patients with spiritual care.] [The article is 11 pages.]