Healthcare chaplains' perspectives on working with culturally diverse patients and families.

OBJECTIVES: Considering the ethnic, racial, and cultural diversity in the U.S., we aim to explore the experiences of healthcare chaplains as they provide culturally sensitive care to diverse patients and their families. METHODS: This is a qualitative study. Individual interviews were conducted with 14 healthcare chaplains recruited from 3 U.S. chaplaincy organizations. RESULTS: Thematic analysis with constant comparison yielded 6 themes in the chaplains' experiences: (1) the diverse roles of chaplains; (2) their high levels of comfort in working with diverse populations, attributed to cultural sensitivity and humility training; (3) cues for trust-building; (4) common topics of diversity, equity, and inclusion discussed; (5) gaps in chaplaincy training; and (6) the importance of collaboration and negotiation with healthcare professionals to accommodate cultural needs. SIGNIFICANCE OF RESULTS: This research highlights the valuable role of chaplains in providing culturally sensitive care and suggests areas for improving chaplaincy training and education to better serve diverse patient populations.

Examining Moderation of Dignity Therapy Effects by Symptom Burden or Religious/Spiritual Struggles.

CONTEXT: Dignity therapy (DT) is a well-researched psychotherapeutic intervention but it remains unclear whether symptom burden or religious/spiritual (R/S) struggles moderate DT outcomes. OBJECTIVE: To explore the effects of symptom burden and R/S struggles on DT outcomes. METHODS: This analysis was the secondary aim of a randomized controlled trial that employed a stepped-wedge design and included 579 participants with cancer, recruited from six sites across the United States. Participants were ages 55 years and older, 59% female, 22% race other than White, and receiving outpatient specialty palliative care. Outcome measures included the seven-item dignity impact scale (DIS), and QUAL-E subscales (preparation for death; life completion); distress measures were the Edmonton Symptom Assessment Scale (ESAS-r) (symptom burden), and the Religious Spiritual Struggle Scale (RSS-14; R/S). RESULTS: DT effects on DIS were significant for patients with both low (P = 0.03) and moderate/high symptom burden (P = 0.001). They were significant for patients with low (P = 0.004) but not high R/S struggle (P = 0.10). Moderation effects of symptom burden (P = 0.054) and R/S struggle (P = 0.52) on DIS were not significant. DT effects on preparation and completion were not significant, neither were the moderation effects of the two distress measures. CONCLUSION: Neither baseline symptom burden nor R/S struggle significantly moderated the effect of DT on DIS in this sample. Further study is warranted including exploration of other moderation models and development of measures sensitive to effects of DT and other end-of-life psychotherapeutic interventions.

Engaging Mortality: Effective Implementation of Dignity Therapy.

Background: Patients consider the life review intervention, Dignity Therapy (DT), beneficial to themselves and their families. However, DT has inconsistent effects on symptoms and lacks evidence of effects on spiritual/existential outcomes. Objective: To compare usual outpatient palliative care and chaplain-led or nurse-led DT for effects on a quality-of-life outcome, dignity impact. Design/Setting/Subjects: In a stepped-wedge trial, six sites in the United States transitioned from usual care to either chaplain-led or nurse-led DT in a random order. Of 638 eligible cancer patients (age ≥55 years), 579 (59% female, mean age 66.4 ± 7.4 years, 78% White, 61% stage 4 cancer) provided data for analysis. Methods: Over six weeks, patients completed pretest/posttest measures, including the Dignity Impact Scale (DIS, ranges 7-35, low-high impact) and engaged in DT+usual care or usual care. They completed procedures in person (steps 1-3) or via Zoom (step 4 during pandemic). We used multiple imputation and regression analysis adjusting for pretest DIS, study site, and step. Results: At pretest, mean DIS scores were 24.3 ± 4.3 and 25.9 ± 4.3 for the DT (n = 317) and usual care (n = 262) groups, respectively. Adjusting for pretest DIS scores, site, and step, the chaplain-led (ß = 1.7, p = 0.02) and nurse-led (ß = 2.1, p = 0.005) groups reported significantly higher posttest DIS scores than usual care. Adjusting for age, sex, race, education, and income, the effect on DIS scores remained significant for both DT groups. Conclusion: Whether led by chaplains or nurses, DT improved dignity for outpatient palliative care patients with cancer. This rigorous trial of DT is a milestone in palliative care and spiritual health services research. clinicaltrials.gov: NCT03209440.

Cost considerations for implementing dignity therapy in palliative care: Insights and implications.

OBJECTIVES: Despite the clinical use of dignity therapy (DT) to enhance end-of-life experiences and promote an increased sense of meaning and purpose, little is known about the cost in practice settings. The aim is to examine the costs of implementing DT, including transcriptions, editing of legacy document, and dignity-therapists' time for interviews/patient's validation. METHODS: Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT. RESULTS: The mean cost per transcript was $84.30 (SD = 24.0), and the mean time required for transcription was 52.3 minutes (SD = 14.7). Chaplain interviews were more expensive and longer than nurse interviews. The mean cost and time required for transcription varied across the study sites. The typical total cost for each DT protocol was $331-$356. SIGNIFICANCE OF RESULTS: DT implementation costs varied by provider type and study site. The study's findings will be useful for translating DT in clinical practice and future research.

NCCN Guidelines® Insights: Distress Management, Version 2.2023.

These NCCN Guidelines for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. All patients experience some level of distress associated with a cancer diagnosis and the effects of the disease and its treatment regardless of the stage of disease. Clinically significant levels of distress occur in a subset of patients, and identification and treatment of distress are of utmost importance. The NCCN Distress Management Panel meets at least annually to review comments from reviewers within their institutions, examine relevant new data from publications and abstracts, and reevaluate and update their recommendations. These NCCN Guidelines Insights describe updates to the NCCN Distress Thermometer (DT) and Problem List, and to the treatment algorithms for patients with trauma- and stressor-related disorders.

A Statement on the Role and Qualifications of Health Care Chaplains for Research and Quality.

CONTEXT: This statement fills a significant gap in the efforts to demonstrate outcomes of the chaplaincy role in health care and to provide direction for quality measurement related to spiritual care as a key domain of serious illness care. OBJECTIVES: The objective of this project was to develop the first major consensus statement on the role and qualifications of health care chaplains in the Unites States. METHODS: The statement was developed by a diverse panel of highly regarded professional chaplains and nonchaplain stakeholders. RESULTS: The document provides guidance to chaplains and other spiritual care stakeholders as they further integrate spiritual care in health care and conduct research and quality improvement efforts to strengthen the evidence base for practice. The consensus statement is in Fig. 1 and available at https://www.spiritualcareassociation.org/role-of-the-chaplain-guidance.html. CONCLUSION: This statement can potentially drive the standardization and alignment of all phases of health care chaplaincy preparation and practice.

Death Anxiety and Correlates in Cancer Patients Receiving Palliative Care.

Background: Death anxiety is powerful, potentially contributes to suffering, and yet has to date not been extensively studied in the context of palliative care. Availability of a validated Death Anxiety and Distress Scale (DADDS) opens the opportunity to better assess and redress death anxiety in serious illness. Objective: We explored death anxiety/distress for associations with physical and psychosocial factors. Design: Ancillary to a randomized clinical trial (RCT) of Dignity Therapy (DT), we enrolled a convenience sample of 167 older adults in the United States with cancer and receiving outpatient palliative care (mean age 65.9 [7.3] years, 62% female, 84% White, 62% stage 4 cancer). They completed the DADDS and several measures for the stepped-wedged RCT, including demographic factors, religious struggle, dignity-related distress, existential quality of life (QoL), and terminal illness awareness (TIA). Results: DADDS scores were generally unrelated to demographic factors (including religious affiliation, intrinsic religiousness, and frequency of prayer). DADDS scores were positively correlated with religious struggle (p < 0.001) and dignity-related distress (p < 0.001) and negatively correlated with existential QoL (p < 0.001). TIA was significantly nonlinearly associated with both the total DADDS (p = 0.007) and its Finitude subscale (p ≤ 0.001) scores. There was a statistically significant decrease in Finitude subscale scores for a subset of participants who completed a post-DT DADDS (p = 0.04). Conclusions: Findings, if replicable, suggest that further research on death anxiety and prognostic awareness in the context of palliative medicine is in order. Findings also raise questions about the optimal nature and timing of spiritual and psychosocial interventions, something that might entail evaluation or screening for death anxiety and prognostic awareness for maximizing the effectiveness of care.

Patients' spiritual concerns and needs and how to address them during advance care planning conversations: Healthcare chaplains' perspectives.

OBJECTIVES: Advance care planning (ACP) conversations require the consideration of deeply held personal values and beliefs and the discussion of uncertainty, fears, and hopes related to current and future personal healthcare. However, empirical data are limited on how such spiritual concerns and needs are supported during ACP. This study explored board-certified healthcare chaplains' perspectives of patients' spiritual needs and support in ACP conversations. METHODS: An online survey of 563 board-certified chaplains was conducted from March to July 2020. The survey included 3 open-ended questions about patients' hopes and fears and about how the chaplains addressed them during ACP conversations. Written qualitative responses provided by 244 of the chaplains were examined with content analysis. RESULTS: The majority of the 244 chaplains were White (83.6%), female (59%), Protestant (63.1%), and designated to one or more special care units (89.8%). Major themes on patients' hopes and fears expressed during ACP were (1) spiritual, religious, and existential questions; (2) suffering, peace, and comfort; (3) focus on the present; (4) hopes and fears for family; and (5) doubt and distrust. Major themes on how chaplains addressed them were (1) active listening to explore and normalize fears, worries, and doubts; (2) conversations to integrate faith, values, and preferences into ACP; and (3) education, empowerment, and advocacy. SIGNIFICANCE OF RESULTS: ACP conversations require deep listening and engagement to address patients' spiritual needs and concerns - an essential dimension of engaging in whole-person care - and should be delivered with an interdisciplinary approach to fulfill the intended purpose of ACP.

Empathic communication in dignity therapy: Feasibility of measurement and descriptive findings.

OBJECTIVE: Dignity therapy (DT) is a guided process conducted by a health professional for reviewing one's life to promote dignity through the illness process. Empathic communication has been shown to be important in clinical interactions but has yet to be examined in the DT interview session. The Empathic Communication Coding System (ECCS) is a validated, reliable coding system used in clinical interactions. The aims of this study were (1) to assess the feasibility of the ECCS in DT sessions and (2) to describe the process of empathic communication during DT sessions. METHODS: We conducted a secondary analysis of 25 transcripts of DT sessions with older cancer patients. These DT sessions were collected as part of larger randomized controlled trial. We revised the ECCS and then coded the transcripts using the new ECCS-DT. Two coders achieved inter-rater reliability (κ = 0.84) on 20% of the transcripts and then independently coded the remaining transcripts. RESULTS: Participants were individuals with cancer between the ages of 55 and 75. We developed the ECCS-DT with four empathic response categories: acknowledgment, reflection, validation, and shared experience. We found that of the 235 idea units, 198 had at least one of the four empathic responses present. Of the total 25 DT sessions, 17 had at least one empathic response present in all idea units. SIGNIFICANCE OF RESULTS: This feasibility study is an essential first step in our larger program of research to understand how empathic communication may play a role in DT outcomes. We aim to replicate findings in a larger sample and also investigate the linkage empathic communication may have in the DT session to positive patient outcomes. These findings, in turn, may lead to further refinement of training for dignity therapists, development of research into empathy as a mediator of outcomes, and generation of new interventions.

Dignity therapy intervention fidelity: a cross-sectional descriptive study with older adult outpatients with cancer.

OBJECTIVES: Intervention fidelity is imperative to ensure confidence in study results and intervention replication in research and clinical settings. Like many brief protocol psychotherapies, Dignity Therapy lacks sufficient evidence of intervention fidelity. To overcome this gap, our study purpose was to examine intervention fidelity among therapists trained with a systematized training protocol. METHODS: For preliminary fidelity evaluation in a large multi-site stepped wedge randomized controlled trial, we analyzed 46 early transcripts of interviews from 10 therapists (7 female; 7 White, 3 Black). Each transcript was evaluated with the Revised Dignity Therapy Adherence Checklist for consistency with the Dignity Therapy protocol in terms of its Process (15 dichotomous items) and Core Principles (6 Likert-type items). A second rater independently coded 26% of the transcripts to assess interrater reliability. RESULTS: Each therapist conducted 2 to 10 interviews. For the 46 scored transcripts, the mean Process score was 12.4/15 (SD = 1.2), and the mean Core Principles score was 9.9/12 (SD = 1.8) with 70% of the transcripts at or above the 80% fidelity criterion. Interrater reliability (Cohen's kappa and weighted kappa) for all Adherence Checklist items ranged between .75 and 1.0. For the Core Principles items, Cronbach's alpha was .92. CONCLUSIONS: Preliminary findings indicate that fidelity to Dignity Therapy delivery was acceptable for most transcripts and provide insights for improving consistency of intervention delivery. The systematized training protocol and ongoing monitoring with the fidelity audit tool will facilitate consistent intervention delivery and add to the literature about fidelity monitoring for brief protocol psychotherapeutic interventions.

Perspectives of board-certified healthcare chaplains on challenges and adaptations in delivery of spiritual care in the COVID-19 era: Findings from an online survey.

BACKGROUND: The COVID-19 pandemic has posed significant challenges for healthcare systems to meet patients' and families' complex care needs, including spiritual care needs. Little data are available about spiritual care delivery in light of the pandemic. AIM: This study examined the impact of COVID-19 on spiritual care by healthcare chaplains in the United States. DESIGN: An online survey of 563 board-certified chaplains was conducted from March to July 2020. The survey, designed to identify chaplains' roles in facilitating conversations about goals of care, included an open-ended question asking how COVID-19 affected chaplaincy practices; 236 chaplains responded. Quantitative data and written qualitative responses were analyzed using descriptive analysis and content analysis, respectively. SETTING/PARTICIPANTS: Majority of participants were white (88%), female (59%), Protestant (53%), and employed full time (86%). Almost half were working in community hospitals (45%) and designated to one or more special units (48%) including ICU, palliative care, and oncology. RESULTS: Three major themes emerged from chaplains' qualitative responses: (1) COVID-19-related risk mitigation and operational changes; (2) impact of social distancing guidelines; and (3) increased need for and provision of psychosocial and spiritual support. CONCLUSIONS: Chaplains reported that COVID-19 challenges contributed to greater social isolation, and mental health concerns for patients, families, and healthcare staff, and substantially changed the way healthcare chaplains provided spiritual care. With evolving healthcare contexts, developing safer, more creative modes of spiritual care delivery while offering systematic support for chaplains can help meet the increasing psychosocial and spiritual needs of patients, families, and healthcare team members.

Quality of Life for Older Cancer Patients: Relation of Psychospiritual Distress to Meaning-Making During Dignity Therapy.

BACKGROUND: Nearly 500,000 older Americans die a cancer-related death annually. Best practices for seriously ill patients include palliative care that aids in promoting personal dignity. Dignity Therapy is an internationally recognized therapeutic intervention designed to enhance dignity for the seriously ill. Theoretically, Dignity Therapy provides opportunity for patients to make meaning by contextualizing their illness within their larger life story. The extent to which Dignity Therapy actually elicits meaning-making from patients, however, has not been tested. AIM: The current study examines (i) extent of patient meaning-making during Dignity Therapy, and (ii) whether baseline psychospiritual distress relates to subsequent meaning-making during Dignity Therapy. DESIGN: Participants completed baseline self-report measures of psychospiritual distress (i.e., dignity-related distress, spiritual distress, quality of life), before participating in Dignity Therapy. Narrative analysis identified the extent of meaning-making during Dignity Therapy sessions. PARTICIPANTS: Twenty-five outpatients (M age = 63, SD = 5.72) with late-stage cancer and moderate cancer-related symptoms were recruited. RESULTS: Narrative analysis revealed all patients made meaning during Dignity Therapy but there was wide variation (i.e., 1-12 occurrences). Patients who made greater meaning were those who, at baseline, reported significantly higher psychospiritual distress, including greater dignity-related distress (r = .46), greater spiritual distress (r = .44), and lower quality of life (r = -.56). CONCLUSION: Meaning-making was found to be a central component of Dignity Therapy. Particularly, patients experiencing greater distress in facing their illness use the Dignity Therapy session to express how they have made meaning in their lives.

Description of a training protocol to improve research reproducibility for dignity therapy: an interview-based intervention.

BACKGROUND: Dignity Therapy (DT) has been implemented over the past 20 years, but a detailed training protocol is not available to facilitate consistency of its implementation. Consistent training positively impacts intervention reproducibility. OBJECTIVE: The objective of this article is to describe a detailed method for DT therapist training. METHOD: Chochinov's DT training seminars included preparatory reading of the DT textbook, in-person training, and practice interview sessions. Building on this training plan, we added feedback on practice and actual interview sessions, a tracking form to guide the process, a written training manual with an annotated model DT transcript, and quarterly support sessions. Using this training method, 18 DT therapists were trained across 6 sites. RESULTS: The DT experts' verbal and written feedback on the practice and actual sessions encouraged the trainees to provide additional attention to eight components: (1) initial framing (i.e., clarifying and organizing of the patient's own goals for creating the legacy document), (2) verifying the patient's understanding of DT, (3) gathering the patient's biographical information, (4) using probing questions, (5) exploring the patient's story thread, (6) refocusing toward the legacy document creation, (7) inviting the patient's expression of meaningful messages, and (8) general DT processes. Evident from the ongoing individual trainee mentoring was achievement and maintenance of adherence to the DT protocol. DISCUSSION: The DT training protocol is a process to enable consistency in the training process, across waves of trainees, toward the goal of maintaining DT implementation consistency. This training protocol will enable future DT researchers and clinicians to consistently train therapists across various disciplines and locales. Furthermore, we anticipate that this training protocol could be generalizable as a roadmap for implementers of other life review and palliative care interview-based interventions.

Chaplaincy in the outpatient setting-getting from here to there.

One of the most evident trends in US health care and health care generally in the developed world is that more and more care is shifting to outpatient settings. This change opens up substantial opportunities, and in many cases, expectations for chaplains to extend the breadth of the care they provide in any health system. However, it also brings many challenges. This paper describes the journey of four very different inpatient chaplaincy services into the outpatient setting. These four examples focus on settings that would historically be thought of as outpatient-those that see patients within the brick and mortar of the health system.

Preliminary Evaluation of a Core Knowledge Test for Certification of Health Care Chaplains.

This article describes the rationale, evolution, implementation, and evaluation of a process for testing core knowledge in health care chaplaincy certification. The process developed by the Spiritual Care Association uses online testing of evidence-based core knowledge developed with several expert advisory committees. The process seems to have acceptable validity, reliability, feasibility and usability and should be considered as a component to current certification processes for health care chaplains.

Existential Quality of Life and Associated Factors in Cancer Patients Receiving Palliative Care.

CONTEXT: Enhancing quality of life (QoL) is a goal of palliative care. Existential QoL is an important aspect of this. OBJECTIVES: This study sought to advance our understanding of existential QoL at the end of life through examining levels of Preparation and Completion, subscales of the QUAL-E, and their associated factors. METHODS: We used data from a multi-site study of 331 older cancer patients receiving palliative care. We examined levels of Preparation and Completion and their association with demographic, religious, and medical factors, and with the Patient Dignity Inventory. RESULTS: Preparation and Completion scores were moderately high. In adjusted models, being 10 years older was associated with an increase of 0.77 in Preparation (P = 0.002). Non-white patients had higher Preparation (1.03, P = 0.01) and Completion (1.56, P = 0.02). Single patients reported Completion score 1.75 point lower than those married (P = 0.01). One-point increase in intrinsic religiousness was associated with a 0.86-point increase in Completion (P = 0.03). One-point increase in terminal illness awareness was associated with 0.75-point decrease in Preparation (P = 0.001). A 10-point increase in symptom burden was associated with a decrease of 0.55 in Preparation (P < 0.001) and a decrease of 1.0 in Completion (P < 0.001). The total Patient Dignity Inventory score and all of its subscales were negatively correlated with Preparation (r from -.26 to -.52, all P < 0.001) and Completion (r from -.18 to -.31, all P < 0.001). CONCLUSION: While most patients reported moderate to high levels of existential QoL, a subgroup reported low existential QoL. Terminal illness awareness and symptom burden may be associated with lower existential QoL.

Prevalence, Predictors and Correlates of Religious and Spiritual Struggles in Palliative Cancer Patients.

CONTEXT: Religion and spirituality (r/s) are important resources in coping with cancer. However, there are aspects of r/s, such as religious and spiritual struggles, found to be associated with poorer outcomes. A new measure has been adapted from the Religious and Spiritual Struggles Scale (RSS) to assess r/s struggles: the RSS-14. This concise measure allows for the assessment of multiple types of r/s struggles for people from different religious backgrounds or none. OBJECTIVES: The aim of the present study was to examine the prevalence, predictors and correlates of r/s struggles as measured by the RSS-14 and its subdomains in a cancer population receiving palliative care. METHODS: Data were collected from six outpatient palliative care services across the US. Inclusion criteria for patients were age 55 or older with a cancer diagnosis. In addition to demographic and r/s characteristics, study measures included the Edmonton Symptom Assessment Scale (ESAS), the Patient Dignity Inventory (PDI) and the Quality of Life at the End of Life (QUAL-E). RESULTS: The study included 331 participants. Some r/s struggle was reported by 66%, moderate to high struggle for at least one item was reported by 20% of the patients. In bivariate analyses, r/s struggle was associated with greater symptom burden, greater dignity-related problems and poorer quality of life; in multivariable analyses, dignity-related problems remained a predictor of total r/s struggle. CONCLUSION: R/S struggles may compromise well-being for cancer patients receiving palliative care. Clinicians should consider periodic screening for r/s struggles and referrals for spiritual care if indicated.

Association of Race with End-of-Life Treatment Preferences in Older Adults with Cancer Receiving Outpatient Palliative Care.

Background: End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality. Objective: To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care. Methods: A retrospective observational study was performed on baseline data from a multisite randomized clinical trial of Dignity Therapy in 308 older cancer patients who were receiving outpatient palliative care (PC). Interviews addressed end-of-life treatment preferences, religion, religiosity and spirituality, and awareness of prognosis. End-of-life treatment preferences for care were examined, including preferences for general treatment, cardiopulmonary resuscitation (CPR), and mechanical ventilation (MV). Bivariate associations and multiple logistic regression analysis of treatment preferences with demographic and other baseline variables were conducted. Results: Our regression models demonstrated that race was a significant predictor for CPR preference and preferences for MV, although not for general treatment goals. Minority patients were more likely to want CPR and MV than whites. Men were more likely to opt for MV, although not for CPR or overall aggressive treatment, than women. Higher level of education was a significant predictor for preferences for less aggressive care at the end-of-life but not for CPR or MV. Higher level of terminal illness awareness was also a significant predictor for preferences for CPR, but not MV or aggressive care at the end-of-life. Discussion: Race was significantly associated with all three markers for aggressive care in bivariate analysis and with two out of three markers in multiple regression analysis, with minorities preferring aggressive care and whites preferring less aggressive care. Contrary to our hypothesis, income was not significantly associated with treatment preferences, whereas religion was significantly associated with all markers for aggressive care in bivariate models, but not in multiple regression models. Clinical Trial Registration Number NCT03209440.