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December 2018 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
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 (2018): online ahead of print, November 20, 2018.
[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 a product of the continuing work of clinical research in Spirituality & Medicine at Indiana University Health, with lead author Saneta Maiko being Chaplain Researcher for the Indiana University Health Academic Health Center, in connection with the Department of Spiritual Care & Chaplaincy Services and the Daniel F. Evans Center for Spiritual and Religious Values in Healthcare. "The goal of this study was to gain a deeper understanding of the S/R [i.e., spiritual/religious] coping resources used by surrogates of hospitalized older adults," given that "there is little empirical research describing in...depth the role of spirituality and/or religion in surrogate coping" [MS p. 2]. The findings here provide groundwork for how chaplains might identify and help with surrogates' needs.
Forty-six patient-surrogate dyads participated in audio-recorded interviews between June 2011 and January 2012, before saturation was achieved in qualitative analysis. "[P]urposeful sampling...ensure[d] adequate numbers of participants in which life-sustaining treatment decisions were considered..." [MS p. 3]. "This study was a secondary analysis of qualitative data collected for a larger prospective study of surrogates' decision making" [MS p. 2, and see Related Items of Interest, §I, below]. Among the questions that were part of the interview guide (which was revised during the process of data collection): "'How did your religious or spiritual beliefs play a role in your experience when [patient] was in the hospital,' and 'What religious or spiritual practices helped you in these times?'" [MS pp. 2-3]. The authors give a brief but good description of the data analysis method [--see MS p. 3].
Five major themes around coping resources emerged:
- PERSONAL PRAYER
- "The majority of religious participants stated that personal prayer was a source of hope and comfort," with many regarding it as their "most important spiritual activity." "Personal prayers, especially when perceived as answered, were described as giving strength to the surrogate." "Prayers from others such as the person's faith communities and friends were also valued as sources of support." Other religions practices were mentioned by the participants (e.g., reading scripture), but these appeared to be "less important than prayer." [MS p. 3]
- TRUST IN GOD
- "Several surrogates expressed trust in God that included both acknowledging God's power over events and a sense of being guided by God. This trust allowed the surrogate to let go of worry or a sense of responsibility for the outcome of the illness." The researchers suggest that clergy visits, particular interpretations of scripture, and "[k]nowing that a loved one is spiritually at peace" may contribute to this sense of trust. [MS pp. 3-4]
- SUPPORTIVE RELATIONSHIPS
- • Staff -- "Hospital staff...provided substantial support that led to a sense of trust and reassurance," and "[e]xcellent communication from staff may be a source of peace." However, "we did not find evidence that the medical team explicitly discussed religion or spirituality...." [MS p. 4]
- • Chaplains -- "Chaplains...were explicitly identified as sources of spiritual and emotional support," with sacramental rituals being specifically mentioned. Some participants did not know they could ask for a chaplain, and others did not understand the role of one. But, "one participant described the role of the chaplains as something other than supportive":
A lot of comfort, well, and sometimes it scares them. You know? About to see, when you see a priest or a chaplain heading toward you. It's not going to be good news.. ..And that, that's one thing that they have a problem overcoming because people would just kind of associate a chaplain with something that's not going to be good news. [MS p. 4]
- • Family and Friends -- "Some surrogates discussed how their network of social support played a role in their ability to cope," with an example offered of family giving a sense of how "we're all kind of in this together and all agreeing...." [MS p. 4]
- • Faith Community -- "...[V]isits from clergy and congregants, together with their prayers, had an impact on surrogates," with examples being how surrogates may turn to clergy for their experience and advice or may feel a congregation as a "big support group." [MS pp. 4-5]
- SPIRITUAL PRACTICES
- "...[S]ome surrogates made the distinction of relying on spiritual sources of support--such as turning to nature--to cope," with "[t]hese approaches [being] especially important for surrogates who did not identify as religious." [MS p. 5]
- TRANSFORMING PERSONAL EXPERIENCES
- "...[W]hen surrogates described their coping, they also described positive changes, which we call transformation," which "often led to a sense of peace, acceptance, and/or reassurance," with the role of "acceptance" being given particular attention. [MS p. 5]
The heart of the article lies in the voices of participants lifted up as illustrations of the identified themes.
The research team offers summary observations around these themes:
Interviews with surrogates for seriously ill hospitalized adult patients revealed several specific ways in which S/R resources promote coping. For religious surrogates, two important themes emerged: prayer and trust in God, both of which fundamentally relate to the surrogate's relationship with God. Some surrogates, including those who do not identify as religious, described solitary activities such as creating or enjoying art and being in nature as important resources for coping. In addition, close relationships are also clearly important to both religious and nonreligious surrogates. Such S/R experiences may lead to a transformational experience in which surrogates cope with negative emotions such as distress, fatigue, or worry. [MS p. 5]
Regarding chaplains in particular, "only a few surrogates of incapacitated hospitalized patients received care from hospital chaplains..." and [s]ome surrogates did not understand the work of chaplains in the hospital" [MS p. 6]. But the authors state, "Given our observation that many surrogates rely on S/R coping mechanisms and value support from chaplains and clergy, additional S/R support may reduce the high degree of distress that surrogates face when their loved ones are critically ill and hospitalized" [MS p. 5].
The authors name "strengths" of their research:
First, we conducted a semistructured interview and blinded the inter-rater readers to the outcomes. Qualitative inquiry invites a person's life story to be more fully expressed and allows researchers to propose a clinical practice strategy based on the participants' own experiences. Second, this study offers findings that may influence clinical practice adjustment, spiritual-care intervention design, and effective team building, and possibly communication in critical care situations. [MS p. 6]
Nevertheless, they appropriately point out a number of limits to the study, including cross-sectional design that does not address causation, demographic limitations, and how a focus on spiritual/religious coping did not attend to "alternative coping strategies such as substance abuse and drug use" [MS p. 6].
In light of the implicit acknowledgment that surrogates might cope dysfunctionally by drug/alcohol use, this reader wondered whether the interview prompts (e.g., "What religious or spiritual practices helped you...?"), while they were clearly productive and while they apparently allowed some participants to share about potentially problematic aspects of religion/spirituality (e.g., the approach of a chaplain as sometimes foreboding), subtly encouraged participants to downplay dysfunctionality regarding religion/spirituality. In terms of the prayer data, for instance, the present study did not turn up indications of negative religious coping, in contrast with other research [--see MS p. 5]. There may be significant social expectation bias around the topic, after all. That being said, however, the findings here show the breadth of positive coping resources related directly and indirectly to surrogates' experiences, all of which should be useful for chaplains to keep in mind when considering how to work with surrogates as surrogates themselves are working to cope. One practical challenge to chaplain readers would be: Are we aware of, and how might we support, each of the coping themes for surrogates? And a major research challenge is, as the authors mention in closing, to undertake investigation into "the effect of spiritual care on surrogate decision-makers' spiritual and emotional health outcomes" [MS P. 6].
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Special Comment to ACPE Research by Chaplain Saneta Maiko, PhD, MS, BCC, John Templeton Research Fellow, Indiana University Fairbanks School of Public Health; Affiliate Researcher, Center for Aging Research; and Chaplain Researcher, IU Health Academic Health Center, Indianapolis, IN (smaiko@iuhealth.org):
As you reflect on this article, consider the work you do with patients and their families, who often play the role of caregivers or surrogate decision makers. Think of the distress that family caregivers face, especially when confronting difficult medical decisions. How would chaplains be engaged in such dynamics that are critically and emotionally driven? The results from this study show that many surrogates who are religious use personal prayer as the most important coping resource. Trusting in God to be in charge or to provide guidance was also commonly expressed. Additionally, supportive relationships from family, friends, and coworkers together with painting, coloring, silent reflection, music, recreation, and reading were identified as coping strategies. We are using the findings from this study to conduct a randomized controlled trial to improve outcomes for the surrogate decision makers of critically ill patients. Our Association of Professional Chaplains (APC) continues to update its standards of practice and recently included the standard about research (Standard 12). Conducting such a research takes time, commitment, collaboration, good mentorship and discipline. This kind of evidence-based research, although challenging, has the potential to improve the well-being of our patients and family members through quality spiritual care.
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Suggestions for Use of the Article for Student Discussion:
This should be a highly readable article for any chaplaincy student and would provide a useful focus on the topic of the care of surrogate decision-makers, though it would likely require some adaptation for pediatric settings. Do students tend to think of family members in terms of the dynamics and potential burdens of medical decision-making? How have they encountered this? Has decision-making come up only in terms of end-of-life care or more broadly? Discussion could be structured largely around the identified themes of the study, though there might understandably be extra attention given to surrogates' sense of chaplains. What does the group think about the significance to surrogates of whether they felt prayers were "answered"? Have they worked with surrogates whose beliefs or interpretations of scripture (e.g., God won't burden someone more than the person can bear) differ from their own? The study indicates that surrogates may often turn to clergy for advice. What are the implications of this for a model of pastoral care that urges chaplains to follow the lead of the other person? What of the finding that prayer may be particularly important for surrogates? The group might also discuss and tentatively unpack the concept of acceptance. In addition, students could muse about the ways that surrogates' sense of hospital staff relationships can play into their overall feelings of trust, and how chaplains can help facilitate staff-surrogate communication/relationships. If the group were to envision some sort of outcome-oriented research about surrogates' coping, what sort of outcomes would be of most interest, and what ones might be most feasible to investigate? Finally, since surrogate decision-making is circumscribed by state law, are the students aware of what laws (or health care facility policies based upon state law) are in place where they are working?
Related Items of Interest:
I. The larger study which provided the data for secondary analysis for the current research is:
Torke, A. M., Petronio, S., Purnell, C. E., Sachs, G. A., Helft, P. R. and Callahan, C. M. "Communicating with clinicians: the experiences of surrogate decision-makers for hospitalized older adults." Journal of the American Geriatrics Society 60, no. 8 (August 2012): 1401-1407. [(Abstract:) OBJECTIVES: To describe communication experiences of surrogates who had recently made a major medical decision for a hospitalized older adult. DESIGN: Semistructured interviews about a recent hospitalization. SETTING: Two hospitals affiliated with one large medical school: an urban public hospital and a university-affiliated tertiary referral hospital. PARTICIPANTS: Surrogates were eligible if they had recently made a major medical decision for a hospitalized individual aged 65 and older and were available for an interview within 1 month (2-5 months if the patient died). MEASUREMENTS: Interviews were audio-recorded, transcribed, and analyzed using methods of grounded theory. RESULTS: Thirty-five surrogates were interviewed (80% female, 44% white, 56% African American). Three primary themes emerged. First, it was found that the nature of surrogate-clinician relationships was best characterized as a relationship with a "team" of clinicians rather than individual clinicians because of frequent staff changes and multiple clinicians. Second, surrogates reported their communication needs, including frequent communication, information, and emotional support. Surrogates valued communication from any member of the clinical team, including nurses, social workers, and physicians. Third, surrogates described trust and mistrust, which were formed largely through surrogates' communication experiences. CONCLUSION: In the hospital, surrogates form relationships with a "team" of clinicians rather than with individuals, yet effective communication and expressions of emotional support frequently occur, which surrogates value highly. Future interventions should focus on meeting surrogates' needs for frequent communication and high levels of information and emotional support.]
II. The experience and perspective of surrogate decision-makers was the subject of 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. Note the various Related Items of Interest for that month's feature. In addition to those, however, note also the following articles on surrogate decision-making:
Li, L., Nelson, J. E., Hanson, L. C., Cox, C. E., Carson, S. S., Chai, E. J., Keller, K. L., Tulsky, J. A. and Danis, M. "How surrogate decision-makers for patients with chronic critical illness perceive and carry out their role." Critical Care Medicine 46, no. 5 (May 2018): 699-704. [(Abstract:) OBJECTIVES: Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time. DESIGN: Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial. SETTINGS: Medical ICUs at four U.S. hospitals. PARTICIPANTS: Family members of patients with chronic critical illness (adults mechanically ventilated for >= 7 d and expected to remain ventilated and survive for >= 72 hr) who participated in the active arm of a communication intervention study. INTERVENTIONS: Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner. MEASUREMENTS AND MAIN RESULTS: Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens. CONCLUSIONS: Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care.]
Nelson, J. E., Hanson, L. C., Keller, K. L., Carson, S. S., Cox, C. E., Tulsky, J. A., White, D. B., Chai, E. J., Weiss, S. P. and Danis, M. "The voice of surrogate decision-makers. family responses to prognostic information in chronic critical illness." American Journal of Respiratory and Critical Care Medicine 196, no. 7 (October 1, 2017): 864-872. [(Abstract:) RATIONALE: Information from clinicians about the expected course of the patient's illness is relevant and important for decision-making by surrogates for chronically critically ill patients on mechanical ventilation. OBJECTIVES: To observe how surrogates of chronically critically ill patients respond to information about prognosis from palliative care clinicians. METHODS: This was a qualitative analysis of a consecutive sample of audio-recorded meetings from a larger, multisite, randomized trial of structured informational and supportive meetings led by a palliative care physician and nurse practitioner for surrogates of patients in medical intensive care units with chronic critical illness (i.e., adults mechanically ventilated for >=7 days and expected to remain ventilated and survive for >=72 h). MEASUREMENTS AND MAIN RESULTS: A total of 66 audio-recorded meetings involving 51 intervention group surrogates for 43 patients were analyzed using grounded theory. Six main categories of surrogate responses to prognostic information were identified: (1) receptivity, (2) deflection/rejection, (3) emotion, (4) characterization of patient, (5) consideration of surrogate role, and (6) mobilization of support. Surrogates responded in multiple and even antithetical ways, within and across meetings. CONCLUSIONS: Prognostic disclosure by skilled clinician communicators evokes a repertoire of responses from surrogates for the chronically critically ill. Recognition of these response patterns may help all clinicians better communicate their support to patients and families facing chronic critical illness and inform interventions to support surrogate decision-makers in intensive care units. Clinical trial registered with www.clinicaltrials.gov (NCT 01230099).]
Schenker, Y., White, D. B., Crowley-Matoka, M., Dohan, D., Tiver, G. A. and Arnold, R. M. "'It hurts to know...and it helps': exploring how surrogates in the ICU cope with prognostic information." Journal of Palliative Medicine 16, no. 3 (March 2013): 243-249. [(Abstract:) BACKGROUND: Surrogates of critically ill patients in the intensive care unit (ICU) want honest prognostic information, but they also want to hear good news. There has been little examination of how surrogates navigate these dual needs or how clinicians should respond. OBJECTIVE: The aim of this study was explore how surrogates in the ICU experience and cope with prognostic information and describe their recommendations for clinicians. METHODS: We conducted a qualitative interview study with 30 surrogates facing life-sustaining treatment decisions in five ICUs in Pittsburgh, Pennsylvania. In-depth, semi-structured interviews with surrogates in the ICU focused on general experiences, emotional needs, informational needs, and recommendations for clinicians. We inductively analyzed transcripts for key themes using constant comparative methods. RESULTS: Surrogates experience a tension between wanting to know what to expect and needing to remain hopeful. This tension underlies their experience receiving prognostic information and may lead to behaviors that allow continued hope in the face of bad news, including: 1) focusing on small details rather than the big picture, 2) relying on gut instincts or personal beliefs about the patient, 3) seeking more positive prognostic information from other sources, and, for a minority, 4) avoiding or disbelieving prognostic information. Surrogates emphasize the importance of frequent communication and call on physicians to gently help them prepare for the worst and hope for the best. CONCLUSIONS: Surrogates in the ICU experience conflicting emotional and informational needs. They describe behaviors that give the appearance of avoiding bad news while simultaneously asking physicians to help them cope with prognostic information.]
White, D. B., Ernecoff, N., Buddadhumaruk, P., Hong, S., Weissfeld, L., Curtis, J. R., Luce, J. M. and Lo, B. "Prevalence of and factors related to discordance about prognosis between physicians and surrogate decision makers of critically ill patients." JAMA 315, no. 19 (May 17, 2016): 2086-2094. [(Abstract:) IMPORTANCE: Misperceptions about prognosis by individuals making decisions for incapacitated critically ill patients (surrogates) are common and often attributed to poor comprehension of medical information. OBJECTIVE: To determine the prevalence of and factors related to physician-surrogate discordance about prognosis in intensive care units (ICUs). DESIGN, SETTING, AND PARTICIPANTS: Mixed-methods study comprising quantitative surveys and qualitative interviews conducted in 4 ICUs at a major US medical center involving surrogate decision makers and physicians caring for patients at high risk of death from January 4, 2005, to July 10, 2009. MAIN OUTCOMES AND MEASURES: Discordance about prognosis, defined as a difference between a physician's and a surrogate's prognostic estimates of at least 20%; misunderstandings by surrogates (defined as any difference between a physician's prognostic estimate and a surrogate's best guess of that estimate); differences in belief (any difference between a surrogate's actual estimate and their best guess of the physician's estimate). RESULTS: Two hundred twenty-nine surrogate decision makers (median age, 47 [interquartile range {IQR}, 35-56] years; 68% women) and 99 physicians were involved in the care of 174 critically ill patients (median age, 60 [IQR, 47-74] years; 44% women). Physician-surrogate discordance about prognosis occurred in 122 of 229 instances (53%; 95% CI, 46.8%-59.7%). In 65 instances (28%), discordance was related to both misunderstandings by surrogates and differences in belief about the patient's prognosis; 38 (17%) were related to misunderstandings by surrogates only; 7 (3%) were related to differences in belief only; and data were missing for 12. Seventy-five patients (43%) died. Surrogates' prognostic estimates were much more accurate than chance alone, but physicians' prognostic estimates were statistically significantly more accurate than surrogates' (C statistic, 0.83 vs 0.74; absolute difference, 0.094; 95% CI, 0.024-0.163; P=.008). Among 71 surrogates interviewed who had beliefs about the prognosis that were more optimistic than that of the physician, the most common reasons for optimism were a need to maintain hope to benefit the patient (n=34), a belief that the patient had unique strengths unknown to the physician (n=24), and religious belief (n=19). CONCLUSIONS AND RELEVANCE: Among critically ill patients, discordant expectations about prognosis were common between patients' physicians and surrogate decision makers and were related to misunderstandings by surrogates about physicians' assessments of patients' prognoses and differences in beliefs about patients' prognoses.]
III. Lead author, Saneta Maiko, was the subject of a news article by Beth Newton Watson for our Fall 2017 Newsletter --see news item #4. Also, as part of the burgeoning research initiative at Indiana University Health, Chaplain Maiko along with co-author Dr. Alexia M. Torke have teamed with others on another study just out --on a different topic:
Maiko, S., Johns, S. A., Helft, P. R., Slaven, J. E., Cottingham, A. H. and Torke, A. M. "Spiritual experiences of adults with advanced cancer in outpatient clinical settings." Journal of Pain and Symptom Management (2018): online ahead of print, December 6, 2018. [(Abstract:) CONTEXT: Adults who have advanced cancer experience distress, and many use religion and spirituality to cope. Research on the spiritual experiences of advanced cancer patients will help guide the provision of high-quality spiritual care. OBJECTIVES: To qualitatively describe advanced cancer patients' spiritual experiences of illness. METHODS: We conducted semi-structured qualitative interviews at a single cancer center with 21 patients with stage IV solid malignancies who had a prognosis of less than 12 months, as estimated by each patient's medical oncologist. Five investigators conducted a thematic analysis of the transcribed interviews. RESULTS: We found 31 patients who were eligible for enrollment, and 21 (67.7%) participated in interviews to thematic saturation. Using a thematic-analysis approach, five major themes emerged. Relationships with family and friends was the most important theme among all 21 patients irrespective of their religious or spiritual identity. Relationship with God and faith community was frequently identified by those who considered themselves spiritually religious. Cancer often led to reflection about the meaning of life and the nature of existential suffering Patients addressed the extent to which identity was changed or maintained through the cancer experience, and some expressed acceptance as a way of coping with illness. CONCLUSIONS: Spiritual care for dying cancer patients should always include the exploration of relationships with family and friends, as well as God and faith community for some patients. Relationships with family, friends, and God can be a source of strength for many. Making meaning, addressing identity concerns, supporting acceptance as a resource for coping with illness, and acknowledging existential suffering will often arise for these patients.]
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