The impact of a spiritual legacy intervention in patients with brain cancers and other neurologic illnesses and their support persons.

OBJECTIVE: The objectives were to assess the feasibility of using a novel, comprehensive chaplain-led spiritual life review interview to develop a personal Spiritual Legacy Document (SLD) for persons with brain tumors and other neurodegenerative diseases and to describe spiritual well-being (SWB), spiritual coping, and quality of life (QOL) of patients and their support persons (SP) before and after receipt of the SLD. METHODS: Patient-SP pairs were enrolled over a 2-year period. Assessments included the Functional Assessment of Chronic Illness Therapy-Spiritual Expanded Version, Brief Religious Coping Scale, Brief COPE Inventory, and QOL Linear Analog Scale. Baseline assessments were completed prior to an audio-recorded spiritual life review interview with a chaplain. RESULTS: Thirty-two patient/SP pairs were enrolled; 27 completed baseline assessments and the interview. Twenty-four reviewed their SLD and were eligible for follow-up. A total of 15 patients and 12 SPs completed the 1-month follow-up; 10 patients and seven SPs completed the 3-month follow-up. Patients endorsed high levels of SWB and spiritual coping at baseline. Both patients and SPs evidenced improvement on several aspects of SWB, spiritual coping, and QOL at 1 month, but patients' decreased financial well-being was also observed. Patients and SPs demonstrated favorable changes in peacefulness and positive religious coping at both time points. CONCLUSIONS: A chaplain-led spiritual life review is a feasible intervention for patients with neurodegenerative disease and results in beneficial effects on patients and SPs. Copyright © 2015 John Wiley & Sons, Ltd.

Respecting the spiritual side of advanced cancer care: a systematic review.

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 feasibility and educational value of Hear My Voice, a chaplain-led spiritual life review process for patients with brain cancers and progressive neurologic conditions.

Research continues to establish the importance of spirituality for many persons with medical illnesses. This paper describes a pilot study titled, "Hear My Voice," designed to provide an opportunity for persons with progressive neurologic illnesses, including brain tumors and other neurodegenerative diseases, to review and discuss their spirituality with a board-certified chaplain, and to prepare a spiritual legacy document (SLD). First, we provide background information that underscores the importance of such a project for this patient population that is particularly vulnerable to cognitive impairment and communication difficulties. Second, we provide detailed methodology, including the semi-structured interview format used, the development of the SLD, and an overview of responses from participants and investigators. We also describe the quantitative and qualitative approaches to analysis taken with the aim of developing scientific validation in support of the Hear My Voice project.

Spiritual quality of life in advanced cancer patients receiving radiation therapy.

OBJECTIVE: The aim of this randomized controlled trial for patients with advanced cancer receiving radiation therapy was to determine the effect of a multidisciplinary intervention on spiritual quality of life (QOL) at the end of the intervention (week 4) and at two follow-up time points (weeks 26 and 52). METHODS: One hundred thirty-one persons were randomized to either the intervention or control (forms only) groups. The intervention included six 90-min in-person sessions based on the physical, emotion, social, and spiritual domains of QOL. Three sessions included the spiritual component. Caregivers were present for four sessions, one which included a spiritual component. Ten follow-up phone calls were made to the patients in the intervention group during the 6-month follow-up period. Patients completed the Functional Assessment of Cancer Therapy: General Scale, the Linear Analog Self-Assessment which includes an assessment of spiritual QOL, and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) at enrollment, and weeks 4, 27, and 52. RESULTS: Following the intervention, the intervention group demonstrated improved spiritual QOL on the FACIT-Sp, whereas the spiritual QOL of the control group decreased, resulting in significant mean changes between groups (total score: 1.7 vs. -2.9; p < 0.01; meaning/peace subscale: 1.0 vs. -3.5; p < 0.01; faith subscale: 3.1 vs. -1.7; p = 0.04). CONCLUSIONS: The results indicate that a multidisciplinary intervention which includes a spiritual component can maintain the spiritual QOL of patients with advanced cancer during radiation therapy.

Relationship between medical burden, depression, and quality of life in psychogeriatric inpatients: implications for providers of pastoral care.

This study describes medical burden among individuals > or = 65 years hospitalized for depression in order to determine its associations with depression and quality of life (QOL) and thus provide suggestions for spiritual care providers. Using reliable, validated measures, the 45 participants who completed the study demonstrated moderate medical burden that was significantly associated with physical QOL but not with mental QOL or depression. Irrespective of the level of medical burden, subjects exhibited significant improvement of both depression and QOL during hospitalization. Results suggest that advocacy by spiritual care providers is essential.

Randomized controlled trial of maintaining quality of life during radiotherapy for advanced cancer.

BACKGROUND: Psychosocial interventions often address only 1 domain of quality of life (QOL), are offered to patients with early-stage cancer, do not include the caregiver, and are delivered after cancer treatment has been completed. METHODS: In the current randomized controlled trial, 131 patients with advanced cancer who received radiotherapy and their caregivers were randomly assigned to either a 6-session, structured, multidisciplinary intervention arm or a standard care arm. The average age of the patients was 58 years, the majority were male (63%), and tumor types varied (gastrointestinal [37%], brain [22%], head and neck [16%], lung [13%], and other [12%]). The six 90-minute sessions addressed the 5 domains of QOL: cognitive, physical, emotional, social, and spiritual. The in-person intervention was followed by 10 brief telephone counseling sessions that took place over the next 6 months. RESULTS: Of the 117 patients who completed the study, overall QOL (assessed by Functional Assessment of Cancer Therapy-General [FACT-G]) at week 4 was significantly higher in the intervention group (n = 54) compared with the standard arm control group (n = 63) (75.2 vs 68.7; P = .02). The 10 brief telephone contacts did not appear to impact QOL because at week 27 the groups had identical QOL (means of 77.6 and 77.7, respectively). There was no effect of the intervention noted on caregiver QOL. CONCLUSIONS: Participating in a 6-session multidisciplinary intervention was found to be effective in maintaining the QOL of patients with advanced cancer who were actively receiving radiotherapy. The QOL and symptom burden of this population is striking, making it important to identify effective QOL strategies to implement in conjunction with cancer care.

Hospitalized young adults' expectations of pastoral interventions.

The objective of this analysis of 4500 inpatients was to identify the experience and expectations of 18-35 year olds regarding chaplain visitation and to compare results with data from older adults. 71% of young adults reported wanting to be visited by a chaplain; 45.5% were visited; 68% indicated that this was important. Young adults value chaplains' role as a sign of God's care and presence (77.4%), in providing support for family (73.6%), being present during times of anxiety (66.0%), and praying/reading scripture with them (62.3%). Results were similar to older respondents, but young adults were more likely to value ethical counsel from chaplains (58.5% vs. 38.2%). This study provides clinically relevant information and suggestions for further research.

On These Holy Mountains.

Chaplains are charged with the essential task of reflecting on their experiences and developing their insights into formats that can be shared with others. This brief report summarizes the spiritual distress and coping of four participants in the Hear My Voice pilot study for patients with advanced diseases, and includes questions for reflection on spiritual care and further research. It emphasizes the importance of taking time to listen deeply to one's experiences and the work of others to gain insight and perspective, contribute to the knowledge of others in writing, teaching and research, and advance best practices in spiritual care.

Harnessing the Chaplain's Capacity to Identify Unmet Palliative Needs of Vulnerable Older Adults in the Emergency Department.

Objective: To explore chaplains' ability to identify unmet palliative care (PC) needs in older emergency department (ED) patients. Methods: A palliative chaplain-fellow conducted a retrospective chart review evaluating 580 ED patients, age ≥80 using the Palliative Care and Rapid Emergency Screening (P-CaRES) tool. An emergency medicine physician and chaplain-fellow screened 10% of these charts to provide a clinical assessment. One year post-study, charts were re-examined to identify which patients received PC consultation (PCC) or died, providing an objective metric for comparing predicted needs with services received. Results: Within one year of ED presentation, 31% of the patient sub-sample received PCC; 17% died. Forty percent of deceased patients did not receive PCC. Of this 40%, chaplain screening for P-CaRES eligibility correctly identified 75% of the deceased as needing PCC. Conclusion: Establishing chaplain-led PC screenings as standard practice in the ED setting may improve end-of-life care for older patients.

Improvement of quality of life in hospitalized depressed elderly.

BACKGROUND: Quality of life is important for all individuals, but is frequently overlooked in psychiatric populations. Our purpose was to assess the quality of life (QOL) of depressed psychiatrically hospitalized elderly patients, examine the association of QOL and depression, and explore any QOL differences related to electroconvulsive therapy (ECT). METHODS: This Institutional Review Board (IRB)-approved prospective study recruited geropsychiatric inpatients aged 65 years and older who were depressed, had Mini-mental State Examination (MMSE) scores >18/30, and adequate communication skills. Surveys were completed upon admission and discharge to measure depression (Hamilton Depression Rating Scale (HDRS)), quality of life (Linear Analogue Scales of Assessment (LASA); Medical Outcomes Short Form-36 Health Survey (SF-36)), cognitive function (MMSE; Executive Interview (EXIT 25)), and coping (Brief COPE Inventory (COPE)). Spearman correlations and Wilcoxon signed rank tests were used to assess changes in measures during hospitalization and relationships among variables. RESULTS: The 45 study participants who completed the study had a mean age of 74 years. The majority were female (67%), married (58%), Protestant (60%), with at least high school education (78%). Admission scores demonstrated severe depression (HDRS 24.88 ± 10.14) and poor QOL (LASA overall QOL 4.4 ± 2.79, and SF-36 mental [27.68 ± 9.63] and physical [46.93 ± 10.41] component scores). At discharge, there was a significant improvement of depression (HDRS 24.88v12.04, p < 0.0001) and QOL (LASA overall QOL 4.4v6.66, p < 0.0001; and SF-36 mental [27.68v39.10, p < 0.0001] and physical [46.93v50.98, p = 0.003] component scores). Not surprisingly, depression was negatively correlated with overall QOL, mental well-being, physical well-being, and emotional well-being at both admission and discharge. For the group who received ECT, there was a greater magnitude of improvement in SF-36 vitality (p = 0.002) and general health perception (p = 0.04), but also a reduction in EXIT 25 scores at discharge (p = 0.008). CONCLUSIONS: There was improvement of both QOL and depression during the course of hospitalization. Additionally, improvement of QOL was associated with improvement of depression. Perhaps future studies could develop interventions to improve both mood and QOL in elderly depressed inpatients.

A pilot study of spirituality and inpatient rehabilitation outcomes in persons with spinal cord dysfunction and severe neurological illnesses.

This prospective, observational pilot study was conducted on an academic inpatient rehabilitation unit. Ninety-three persons with spinal cord dysfunction or severe neurological illness participated. All completed admission surveys; 46 completed surveys six months after discharge. The aims were to describe admission and post-discharge spirituality and associations between spirituality and rehabilitation outcomes. At admission, participants reported spirituality similar to that of other samples of medical patients. After discharge, frequency of private spiritual practices increased and spiritual and existential well-being decreased. No significant associations were detected between spirituality and rehabilitation outcomes. Findings suggest the importance of spirituality to the participants and future research with a larger sample and modifications to the methodology.

Spiritual well-being and spiritual practices in elderly depressed psychiatric inpatients.

This study's aims were to describe the spirituality of depressed elderly psychiatric inpatients and to examine associations among spirituality, depression, and quality of life (QOL). Forty-five persons participated. Most reported frequent, stable spiritual practices and experiencing spiritual comfort and guidance. Some reported spiritual distress and changes in spirituality. During hospitalization, participants demonstrated increased spiritual well-being (SWB) and peacefulness, and reduced hopelessness, worthlessness, and guilt. Positive associations were found between SWB and QOL and negative associations between SWB and depression.

"Slowed Down but Not Stopped": A Spiritual Life Review Intervention in Patients with Neurodegenerative Disease.

Spiritual health is important in managing and coping with chronic and debilitating illnesses, such as neurodegenerative diseases. However, few spiritual interventions have addressed this population. This article quantitatively and qualitatively evaluates outcomes of a spiritual life review in neurodegenerative diseases patients. The majority of participants improved or maintained quality of life and spiritual/emotional well-being following the intervention. Spiritual life review may be an important intervention in the comprehensive care of patients with neurodegenerative diseases.

Hearing and Heeding the Voices of those With Advanced Illnesses.

OBJECTIVES: To describe the feasibility of a chaplain-led spiritually focused life review interview and the development of a spiritual legacy document (SLD) for patients with advanced diseases and to describe changes in spiritual well-being (SWB), spiritual coping strategies (SC), and quality of life (QOL) after receiving the SLD. PATIENTS AND METHODS: In all, 130 patients and support person (SP) pairs were recruited from July 2012 to January 2019. Following enrollment, demographic information was gathered and baseline questionnaires were administered. Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12) and a linear analog scale assessment (LASA) measured SWB. LASAs also measured QOL and emotional well-being (EWB). Positive Religious Coping Scale (RCOPE) measured SC. After completion of baseline forms, participants were interviewed (individually) by a chaplain. Interviews were digitally recorded, transcribed, and verified. Transcripts were edited and participants were given the opportunity to make adaptations. The participant-approved draft was then developed into a professionally printed SLD. Follow-up questionnaires were administered to assess change. RESULTS: Significant improvements from baseline to post-SLD follow-up were found for patients on the LASAs: SWB (average 7.7-8.3, P = .01), QOL (average 6.7-7.3, P = .03), EWB (average 6.9-7.5, P = .01), and on the positive RCOPE (average 1.8-2.0, P = .007). Effect sizes were approximately 0.25. Considering any improvement, 61.0% improved their positive RCOPE score, 46.6% improved EWB, and 39.7% improved SWB. No significant changes were found on the FACIT-Sp-12. No significant changes were found for SPs. CONCLUSION: The results suggest that the primary participants who completed the study benefited by significantly increasing their QOL, SWB, EWB, and SC.

Hospital chaplains' involvement in a randomized controlled multidisciplinary trial: implications for spiritual care and research.

Chaplains' involvement in spirituality and health research can contribute something vital and unique to these investigations. It can also provide opportunity for professional growth and increased effectiveness. This article describes the authors' experience as co-investigators in a randomized controlled trial involving patients with a life expectancy of less than five years receiving radiation therapy for advanced cancer. It also discusses the application to clinical settings and other research.

Spirituality and Emotional Distress Among Lung Cancer Survivors.

BACKGROUND: Emerging research is highlighting the importance of spirituality in cancer survivorship as well as the importance of early distress screening. The purpose of this study was to prospectively examine the relationships among spirituality, emotional distress, and sociodemographic variables during the early period of lung cancer survivorship. PATIENTS AND METHODS: Eight hundred sixty-four lung cancer survivors completed the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, and the Short-Form-8 for emotional distress within the first year after lung cancer diagnosis, and 474 of these survivors completed the survey again 1 year later. RESULTS: At baseline, spirituality was associated with lower prevalence of emotional distress, being married, fewer years of cigarette smoking, and better Eastern Cooperative Oncology Group performance status. Additionally, high baseline spirituality was associated with lower rates of high emotional distress at 1-year follow-up. CONCLUSION: These findings suggest that spirituality might serve as a protective factor for emotional distress among lung cancer survivors. Further research is warranted to explore the role of spirituality in promoting distress management among lung cancer survivors.

Patients' expectations of hospital chaplains.

OBJECTIVE: To evaluate patients' expectations of hospital chaplains. PATIENTS AND METHODS: From April 6, 2006, through April 25, 2006, we surveyed by mail 1500 consecutive medical and surgical patients within 3 weeks of their discharge from the hospital. The survey included questions related to demographics, duration and area of hospitalization, awareness of chaplain availability, expectations regarding chaplain visits, and reasons for wanting to see a chaplain. Measured characteristics were summarized by calculating means and SDs for continuous variables and proportions for categorical variables. Proportions were statistically compared via Fisher exact tests or Monte Carlo estimates. RESULTS: Surveys were returned by 535 of the 1500 patients to whom they were sent. Most of those who returned surveys had been hospitalized for less than 1 week (398/514 [77.4%]) and were male (265/510 [52.0%]), married (396/528 [75.0%]), 56 years or older (382/532 [71.8%]), or affiliated with either the Lutheran (177 [33.3%]) or Catholic (133 [25.0%]) churches. Most (78.9%) were aware of the availability of chaplains, and 62.3% would have appreciated chaplain visitation at least every few days. More than half (52.9%) reported that they were visited, and 86.4% reported that this visit was important to them. The primary reason selected for wanting to see a chaplain was "to be reminded of God's care and presence." Items related to ritual, prayer, and pastoral support were also highly endorsed. Some results were dependent on sex, age, religious affiliation, or duration of stay. CONCLUSION: Hospitalized patients value visitation by chaplains and appreciate both religious and supportive interventions. Opportunities for patient care, education, and research are apparent.

Measuring spiritual quality of life in patients with cancer.

There is no one established approach to the measurement of spiritual quality of life (QOL). Available instruments are based on various theoretical components. We used a multi-instrument approach to measure the spiritual domain of QOL that adds to our understanding of a participant self-definition of spiritual QOL. In total, 103 participants with advanced cancer receiving radiation therapy were enrolled in this study. Most were Caucasian, male, and had advanced lung, head and neck, or gastrointestinal cancer. Two instruments, the Spiritual Well-Being Linear Analogue Self Assessment (SWB LASA) and the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp-12), were used to measure spiritual QOL at enrollment and 4, 8, and 27 weeks after enrollment. Analyses included descriptive statistics, Spearman correlations, stepwise multiple regression, and repeated measures analysis of variance. There was a strong association between SWB LASA and FACIT-Sp-12 total scores. However, FACIT-Sp-12 items defining SWB LASA scores varied over time. Two to three of the FACIT-Sp-12 items explained approximately two thirds of the variance in the SWB LASA scores at each time point with the exception of 4 weeks after enrollment. SWB scores were strongly associated with all QOL domains. In research and clinical care, SWB must be treated as a complex concept that has the potential to change over time. Although a single-item measure of SWB provides valuable information and is strongly associated with the multiple item FACIT-Sp-12, our more detailed inquiry using the FACIT-Sp-12 provides additional guidance for the design and timing of spiritual support interventions.

I'm Still Me: Inspiration and Instruction from Individuals with Brain Cancer.

Individuals with brain cancer face many challenges, including threats to cognition, personality, and sensory and motor functioning. These can alter one's sense of identity and result in despair. Chaplain-led spiritual interviews were conducted with 19 patients with brain cancer as part of a larger spiritual legacy intervention called "Hear My Voice." The majority was female (58%), married (68%) and had aggressive/advanced tumors (63%). Participants were 22-68 years of age and expressed the following religious affiliations: Protestant (42%), Catholic (21%), Muslim (5%), and none (32%). Framework analysis was applied to reduce and understand the interview data. Primary codes were relationships with: God or the spiritual, others, and self. Brain cancer was reported to deepen and enrich patients' commitment to these relationships. Struggle and grief were also revealed. Results suggest the continued vitality, growth and generativity of these participants and provide insight for chaplains and others on the medical team.