"A Pain Deep in Your Soul (Being) that is Not Physical:" Assessing Spiritual Pain in Integrative Oncology Consultations.

CONTEXT: Spiritual pain contributes to the suffering of cancer patients. However, it is unclear whether patients seen outside of palliative care report spiritual pain and its relationship with symptom burden. OBJECTIVES: Characteristics of patients reporting spiritual pain were examined, as well as the association of spiritual pain with symptom burden and how spiritual pain affected the factor structure of the Edmonton Symptom Assessment System (ESAS). METHODS: A retrospective chart review was conducted of integrative oncology patients who completed the PROMIS10 and a modified ESAS (ESAS-FS) including financial distress and spiritual pain (pain deep in your soul/being that is not physical). Multiple logistic regression was used to assess associations between demographics and spiritual pain. T-tests compared ESAS-FS symptoms and global health for patients endorsing spiritual pain (0 vs. ≥1). Principal component analyses (oblique rotation) were also used to determine ESAS-FS symptom clusters. RESULTS: The sample (N = 1662) was mostly women (65%) and 39% endorsed spiritual pain at least ≥one. Men and older individuals were less likely to endorse spiritual pain (ps < 0.05). Presence of spiritual pain was associated with worse symptoms on the ESAS-FS and global health (ps < 0.001). The ESAS-FS had two symptom clusters, with the psychological factor including depression, anxiety, wellbeing, sleep, financial distress, and spiritual pain (Cronbach's alpha 0.78). CONCLUSION: Assessing spiritual pain and understanding the effects of its presence or absence in the context of other physical and psychosocial symptoms may provide additional opportunities for preventing exacerbation of symptoms, improving quality of life, and enhancing overall experience of care.

Competencies for quality spiritual care in palliative care in Latin America: from the Spirituality Commission of the Latin American Association for Palliative Care.

Spiritual care is an essential part of quality palliative care. However, the literature regarding spiritual care competencies in Latin America is limited. Herein we propose the basic quality standards for spiritual care in palliative care according to best professional practices and provide a common vocabulary and required competencies for quality clinical spiritual care. Both elements, quality standards and a common vocabulary, are part of an essential step implementing continuous educational initiatives among interdisciplinary palliative care teams in Latin America. Members of the Spirituality Commission of the Latin American Association for Palliative Care and three members of independent professional palliative care organizations identified and reviewed our proposed spiritual care competencies and created a consensus document describing the competencies for general spiritual care. In the context of palliative care in Latin America, general spiritual care is provided by members of interdisciplinary teams. We proposed six competencies for high-quality general spiritual care and their observable behaviors that every member of an interdisciplinary palliative care team should have to provide quality clinical spiritual care in their daily practice: (I) personal, spiritual, and professional development; (II) ethics of spiritual care; (III) assessment of spiritual needs and spiritual care interventions; (IV) empathic and compassionate communication; (V) supportive and collaborative relationships among the interdisciplinary team; and (VI) inclusivity and diversity.

Association between Spirituality, Religiosity, Spiritual Pain, Symptom Distress, and Quality of Life among Latin American Patients with Advanced Cancer: A Multicenter Study.

Objectives: The purpose of this multicenter study was to characterize the association between spirituality, religiosity, spiritual pain, symptom distress, coping, and quality of life (QOL) among Latin American advanced cancer patients. Methods: Three hundred twenty-five advanced cancer patients from palliative care clinics in Chile, Guatemala, and the United States completed validated assessments: Faith, Importance and Influence, Community, and Address (FICA) (spirituality/religiosity), Edmonton Symptom Assessment Scale-Financial/Spiritual (ESAS-FS), including spiritual pain, Penn State Worry Questionnaire-Abbreviated (PSWQ-A), Center for Epidemiologic Studies Depression Scale (CES-D), Brief-coping strategies (COPE) and Brief religious coping (RCOPE) and RCOPE, respectively, and Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, Expanded version (FACIT-Sp-Ex). Results: Median age: 58 years (range: 19-85); 60% female; and 62% Catholic and 30% Christian, but not Catholic. Three hundred fifteen patients (97%) considered themselves spiritual and 89% religious, with median intensities of 7 (interquartile range [IQR]: 5-10) and 7 (5-9), respectively (0-10 scale, 10 = "very much"). Median importance of spirituality/religiosity was 10 (IQR: 8-10). The frequency and associations between spirituality/religiosity and various items were as follows: helps to cope with illness (98%; r = 0.66303; p < 0.0001), positive effect on physical symptoms (81%; r = 0.42067; p < 0.0001), and emotional symptoms (84%; r = 0.16577; p < 0.0001). One hundred ninety-five patients (60%) reported that their spiritual/religious needs had not been supported by the medical team. Spiritual pain was reported in 162/311 patients (52%), with median intensity of 6 (IQR: 5-8). Spiritual pain was associated with pain (p = 0.0225), depression (p < 0.0001), anxiety (p < 0.0001), worry (p < 0.001), behavioral disengagement (p = 0.0148), FACIT-Sp-Ex score (p = 0.0002), and negative RCOPE (p < 0.0001). Significance of Results: Spirituality and religiosity are frequent, intense, and rarely addressed among Latin American patients. Spirituality/religiosity was associated with positive COPE and higher QOL. Spiritual pain was also frequent and associated with physical and psychosocial distress. These patients need increased spiritual/religious support.

The Influence of Spirituality and Religiosity on US Oncologists' Personal Use of and Clinical Practices Regarding Complementary and Alternative Medicine.

BACKGROUND: Cancer patients frequently use complementary and alternative medicine (CAM), and spirituality has been associated with CAM use among patients. We evaluated how oncologists' spirituality and religiosity are associated with personal use and patient recommendations for CAM. METHODS: A survey was mailed to 1000 medical oncologists in the United States. The questionnaire asked about oncologists' approaches to CAM use by patients, focusing on the use of herbs and supplement (HS), and about religiosity and spirituality. RESULTS: Of 937 deliverable questionnaires, 392 were returned (response rate 42%). Respondents were mostly men (71%) and Caucasian (76%), with a median age of 48. Approximately 16% reported no religion, 19% Jewish, 24% Catholic, 28% Christian, and 13% other religions. Eighteen percent reported attending religious services at least once a week, including 15% who attend several times per week. Twenty-eight percent reported high theological pluralism (skepticism regarding whether one religion is comprehensively and uniquely true); 58% described themselves as moderately or very spiritual. Self-reported spirituality and religious service attendance were associated with using CAM personally and recommending HS to patients. In multivariate analyses, moderate-high spirituality and attending religious services less than monthly was positively associated with personal use of CAM: odds ratio (OR) = 3.10 (confidence interval [CI] = 1.5-6.5) and OR = 3.04 (CI = 1.5-6.6), respectively. Physicians with moderate to high spirituality were more likely to report recommending CAM in general (OR = 3.07, CI = 1.3-7.1), but less likely to report recommending HS (OR = 0.33, CI = 0.14-0.75). CONCLUSION: Self-reported spirituality is a significant factor among US oncologists' decision to use CAM and recommend CAM to patients.

Inequalities in Financial Distress, Symptoms, and Quality of Life Among Patients with Advanced Cancer in France and the U.S.

BACKGROUND: Financial distress (FD) is common among patients with advanced cancer. Our purpose was to compare the frequency and intensity of FD and its associations with symptom distress and quality of life (QOL) in these patients in France and the U.S. MATERIALS AND METHODS: In this secondary analysis of two cross-sectional studies, we assessed data on 292 patients who received cancer care at a public hospital or a comprehensive cancer center in France (143 patients) or the U.S. (149 patients). Outpatients and hospitalized patients over 18 years of age with advanced lung or breast or colorectal or prostate cancer were included. Diagnosed cognitive disorder was considered a noninclusion criterion. Advanced cancer included relapse or metastasis or locally advanced cancer or at least a second-line chemotherapy regimen. Patients self-rated FD and assessed symptoms, psychosocial distress, and QOL on validated questionnaires. RESULTS: The average patient age was 59 years, and 144 (49%) were female. FD and high intensity were reported more frequently in U.S. patients than in French (respectively 129 [88%] vs. 74 [52%], p < .001; 100 [98%] vs. 48 [34%], p < .001,). QOL was rated higher by the U.S. patients than by the French (69 [SD, 18] vs. 63 [SD, 18], p = .003). French patients had more psychological symptoms such as anxiety (8 [SD, 4] vs. 6 [SD, 5], p = .008). Associations were found between FD and U.S. residence, FD and single status (0.907, p = .023), and FD and metastasis (1.538, p = .036). In contrast, negative associations were found between FD and older age (-0.052, p = .003) and FD and France residence (-3.376, p = .001). CONCLUSION: Regardless of health care system, FD is frequent in patients with advanced cancer. U.S. patients were more likely to have FD than French patients but reported better QOL. Further research should focus on factors contributing to FD and opportunities for remediation. IMPLICATIONS FOR PRACTICE: Suffering is experienced in any component of the lives of patients with a life-threatening illness. Financial distress (FD) is one of the least explored cancer-related symptoms, and there are limited studies describing its impact on this frail population. This study highlights the high frequency and severity of FD in patients with advanced cancer in the U.S. and France as well as its impact on their physical and emotional symptoms and their quality of life in these different health care systems. It is necessary for all health care providers to explore and evaluate the presence of FD in patients living with life-threatening illnesses.

Advanced cancer patients' reported wishes at the end of life: a randomized controlled trial.

CONTEXT: Conversations about end-of-life (EOL) wishes are challenging for many clinicians. The Go Wish card game (GWG) was developed to facilitate these conversations. Little is known about the type and consistency of EOL wishes using the GWG in advanced cancer patients. METHODS: We conducted a randomized controlled trial to assess the EOL wishes of 100 patients with advanced cancer treated at The University of Texas MD Anderson Cancer Center. The purpose of this study was to determine the EOL wishes of patients with advanced cancer and to compare patients' preference between the GWG and List of wishes/statements (LOS) containing the same number of items. Patients were randomized into four groups and completed either the GWG or a checklist of 35 LOS and one opened statement found on the GWG cards; patients were asked to categorize these wishes as very, somewhat, or not important. After 4-24 h, the patients were asked to complete the same or other test. Group A (n = 25) received LOS-LOS, group B (n = 25) received GWG-GWG, group C (n = 26) received GWG-LOS, and group D (n = 24) received LOS-GWG. All patients completed the State-Trait Anxiety Inventory (STAI) for adults before and after the first test. RESULTS: Median age (interquartile range = IQR): 56 (27-83) years. Age, sex, ethnicity, marital status, religion, education, and cancer diagnosis did not differ significantly among the four groups. All patients were able to complete the GWG and/or LOS. The ten most common wishes identified as very important by patients in the first and second test were to be at peace with God (74 vs. 71 %); to pray (62 vs. 61 %); and to have family present (57 vs. 61 %). to be free from pain (54 vs. 60 %); not being a burden to my family (48 vs. 49 %); to trust my doctor (44 vs. 45 %); to keep my sense of humor (41 vs. 45 %); to say goodbye to important people in my life (41 vs. 37 %); to have my family prepared for my death (40 vs. 49 %); and to be able to help others (36 vs. 31 %). There was significant association among the frequency of responses of the study groups. Of the 50 patients exposed to both tests, 43 (86 %) agreed that the GWG instructions were clear, 45 (90 %) agreed that the GWG was easy to understand, 31 (62 %) preferred the GWG, 39 (78 %) agreed that the GWG did not increase their anxiety and 31 (62 %) agreed that having conversations about EOL priorities was beneficial. The median STAI score after GWG was 48 (interquartile range, 39-59) vs. 47 (interquartile range, 27-63) after LOS (p = 0.2952). CONCLUSION: Patients with advanced cancer assigned high importance to spirituality and the presence/relationships of family, and these wishes were consistent over the two tests. The GWG did not worsen anxiety.

Spirituality and religiosity in supportive and palliative care.

PURPOSE OF REVIEW: To provide an updated overview about the role of spirituality and religiosity in the way patients with life-threatening illnesses cope, and the importance of providing a comprehensive spiritual assessment and spiritual care in an interdisciplinary team work setting, such as supportive and palliative care. RECENT FINDINGS: Spirituality is a lifelong developmental task, lasting until death. Spirituality and religion continue to play an important role across cultures globally. Spirituality is seen as a vital element connected to seeking meaning, purpose, and transcendence in life. Many individuals recognize their life-threatening illness as an opportunity for spiritual growth; therefore, these individuals who have access to spirituality through meaning, purpose, connections with others, or connections with a higher power will have the spiritual resources necessary to adjust to adverse circumstances. It is extremely important to pay attention to patients' and caregivers' cultural and spiritual identity and spiritual needs. SUMMARY: The interdisciplinary supportive and palliative care model of spiritual care proposes inclusion of the spiritual domain in the overall screening and history-taking process and spiritual care by all members of the team, including a full spiritual assessment by a professional chaplain. Research in this extremely important field needs to continue growing.

Spirituality, religiosity, and spiritual pain in advanced cancer patients.

CONTEXT: Spirituality, religiosity, and spiritual pain may affect advanced cancer patients' symptom expression, coping strategies, and quality of life. OBJECTIVES: To examine the prevalence and intensity of spirituality, religiosity, and spiritual pain, and how spiritual pain was associated with symptom expression, coping, and spiritual quality of life. METHODS: We interviewed 100 advanced cancer patients at the M.D. Anderson palliative care outpatient clinic in Houston, TX. Self-rated spirituality, religiosity, and spiritual pain were assessed using numeric rating scales (0=lowest, 10=highest). Patients also completed validated questionnaires assessing symptoms (Edmonton Symptom Assessment Scale [ESAS] and Hospital Anxiety and Depression Scale), coping (Brief COPE and Brief R-COPE), the value attributed by the patient to spirituality/religiosity in coping with cancer (Systems of Belief Inventory-15R), and spiritual quality of life (Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being-Expanded [FACIT-Sp-Ex]). RESULTS: The median age was 53 years (range 21-85) and 88% were Christians. Almost all patients considered themselves spiritual (98%) and religious (98%), with a median intensity of 9 (interquartile range 7-10) of 10 and 9 (range 5-10) of 10, respectively. Spiritual pain was reported in 40 (44%) of 91 patients, with a median score of 3 (1-6) among those with spiritual pain. Spiritual pain was significantly associated with lower self-perceived religiosity (7 vs. 10, P=0.002) and spiritual quality of life (FACIT-Sp-Ex 68 vs. 81, P=0.001). Patients with spiritual pain reported that it contributed adversely to their physical/emotional symptoms (P<0.001). There was a trend toward increased depression, anxiety, anorexia, and drowsiness, as measured by the ESAS, among patients with spiritual pain (P<0.05), although this was not significant after Bonferroni correction. CONCLUSION: A vast majority of advanced cancer patients receiving palliative care considered themselves spiritual and religious. Spiritual pain was common and was associated with lower self-perceived religiosity and spiritual quality of life.

Characteristics of patients who refuse do-not-resuscitate orders upon admission to an acute palliative care unit in a comprehensive cancer center.

BACKGROUND: Refusal of appropriately indicated do-not-resuscitate (DNR) orders may cause harm and distress for patients, families, and the medical team. We conducted a retrospective study to determine the frequency and predictors of refusals of DNR in advanced cancer patients admitted to an acute palliative care unit. METHODS: A total of 2538 consecutive admissions were reviewed. Demographic and clinical characteristics from 200 consecutive patients with DNR orders and 100 consecutive patients who refused DNR were collected, and differences between the groups were determined by multivariate regression and recursive partitioning analysis. RESULTS: Of 2538 admissions, 2530 (99%) were appropriate for DNR discussion. Of the 2530 admissions, 2374 were unique patients, and 100 (4%) of 2374 refused DNR. Refusers had median (interquartile range, IQR) pain of 7 (4-9) versus 5 (3-8, P = .0005), nausea of 2 (0-7) versus 1 (0-4, P = .05), and dyspnea of 1 (0-5) versus 4 (0-7, P = .002) as compared with DNR nonrefusers, respectively. Patients with hematological malignancies and advance directives had a lower DNR refusal risk (odds ratio [OR], 0.38; P = .02, and OR, 0.36; P < .0001, respectively). Multivariate regression analysis revealed that patients with moderate-severe pain (OR, 3.19; P = .002) and with no advance directives (OR, 2.94; P < or = .001) had higher DNR refusal risk. There were more inpatient deaths among DNR nonrefusers (87 of 200 vs 1 of 100, P < .0001). Median (IQR) time from discharge to death was 18 (8-35) days for those with DNR orders and 85 (25-206) days for DNR refusers (P < or = .0001). CONCLUSIONS: DNR refusal in patients admitted to the acute palliative care unit is low, more frequent in patients with more pain and nausea and no advance directives, and associated with longer survival. This study demonstrates possible predictors of complicated DNR discussions.

Predictors of inpatient mortality in an acute palliative care unit at a comprehensive cancer center.

GOALS OF WORK: Predicting inpatient mortality has clinical and financial implications and helps improve the care of patients with advanced cancer and their families. Models with excellent validity and reliability are available for mortality prediction in intensive care units. The purpose of the current study was to determine factors associated with increased likelihood of mortality in an acute palliative care unit (APCU). PATIENTS AND METHODS: We retrospectively reviewed the medical records of 500 patients admitted to the APCU. Basic characteristics and information on symptom intensity, vital signs, relevant laboratory tests, and the presence or absence of delirium were obtained from the records of the consultation that preceded the APCU admission. Univariate and multivariate analyses were conducted to compare characteristics of patients who died in the APCU with characteristics of those who were discharged alive. MAIN RESULTS: Of the 500 patients admitted to the APCU, 124 (25%) died. Factors that were jointly prognostic for death, using multivariate analysis were younger age (odds ratio [OR] for older patients [>/=65] 0.43, 95% confidence interval [CI], 0.25-0.73, p < 0.001), admission from another oncology floor (OR 5.64, 95% CI, 1.82-17.44, p = 0.003), hyponatremia (OR 3.02, 95% CI, 1.76-5.17, p < 0.001), hypernatremia (OR 4.14, 95% CI, 1.25-13.75, p = 0.020), high blood urea nitrogen (BUN) (OR 1.95, 95% CI, 1.15-3.30, p = 0.013), high heart rate (>/=101 bpm) (OR 1.72, 95% CI, 1.01-2.93, p = 0.047), high respiration rate (>/=21/min) (OR 1.67, 95% CI, 1.00-2.79, p = 0.048), and supplemental oxygen use (OR 2.69, 95% CI, 1.60-4.52, p < 0.001). CONCLUSIONS: We observed a significant association of certain factors with increased likelihood of APCU death in patients with advanced cancer. These findings need to be validated in a larger prospective study to develop a model for predicting APCU mortality for patients with advanced cancer.