Comfort and Anguish The Complex Role of Religion in Coping with Illness George Fitchett, DMin, PhD Department of Religion, Health and Human Values george_fitchett@rush.edu 1 Objectives Become aware of evidence about the beneficial effects of religious/spiritual coping with serious illness (eg. cancer). Become aware of evidence about the harmful physical and emotional effects of religious/ spiritual struggle. Learn how clinicians can utilize findings from this research to improve referrals to chaplains. Comfort & Anguish Definitions: Spirituality, Religion Spirituality “a search for the sacred” Religion “the larger social and institutional context in which the search for the sacred takes place” Pargament, Desai & McConnell, 2006, p. 122 Risk of Mortality for More Frequent Worship Attenders 1.20 Adjusted OR for Mortality No association 1.00 0.80 0.80 0.74 0.69 0.60 0.40 0.20 0.73 0.65 0.70 0.82 Comfort “You know, I have a lot of faith. And that keeps me going. I know that God is there walking with me. Even during the bad times I still feel blessed because it could be worse.” 6 Importance of Religion to Cancer Patients Somewhat important 20% Not important 12% Very important 68% N=230 patients with advanced cancer. From Balboni et al, J of Clinical Oncology, 2007 10 Most Commonly Used CAM Therapies in Past 12 Months 1. Prayer specifically for your own health 2. Prayer by others for your health 43.0% 24.4% 3. Natural products 4. Deep breathing exercises 5. Participation in prayer group for own health 18.9% 11.6% 9.6% 6. Meditation 7. Chiropractic care 8. Yoga 9. Massage 7.6% 7.5% 5.1% 5.0% 10. Diet-based therapies 3.5% N=31,004 adults, 2002 NHIS. From: Barnes et al. 2004. Spiritual Well-Being and Quality of Life in Cancer Patients Percent who 'enjoy life very much' Low Faith 80% High Faith 69% 60% 40% 37% 34% 20% 8% 0% No Pain High Pain From Brady, Peterman, Fitchett, Mo, Cella. Psycho-Oncology, 1999 R/S and Quality of Life in Cancer Patients Religion Measure Study Sample, Design Brady, et al, 1999 n=1,610, diverse (medically, racially, SES) out-patients with FACIT-SpWB cancer (83%) and HIV (17%) (SWB) n=142 women with breast cancer, avg time since dx, 14 mo, 84% white, 92% self-rated Cotton et al, heath excellent, 65% no active 1999 religious practices. Daugherty et al, 2004 Convenience sample of n=162 patients in Phase I clinical trials. Results SWB has a positive effect (effect size = 0.5) on contentment with QoL, independent of pain, fatigue, physical, emotional, and social well-being Spiritual Beliefs Index (SBI), Principles of Living SBI positively associated with QoL (p<.0.05) in models adjusted for demographics, health status, and psychological adjustment (Mini-MAC). FACIT-SpWB (SWB), Collaborative Religious Problem Solving SWB positively associated with QoL (total and subscales, unadjusted models). Collaborative problem solving positively associated with SFWB, EWB. Canada et al, 2005 n=129 women with Stage III/IV ovarian cancer Spiritual Beliefs Index (SBI) SBI scores were positively associated with active coping and QoL. Active coping mediated the association between SBI and QoL. Dapueto et al, 2005 Convenience sample of n=309 cancer patients 4 hospitals in Montevideo; 80% with regional/metastatic disease, 57% income inadequate for needs, 42% no current religious affiliation. FACIT-SpWB (SWB) SWB associated with QoL in models adjusted for income, disease, treatment, TMDS. Comfort Religious/spiritual coping is very common. Religious/spiritual coping takes different forms. Positive religious/spiritual coping enhances emotional well being and quality of life. ANGUISH A woman in her fifties with advanced cancer told a chaplain, “Why? Why me? I just can’t figure it out. And I get so depressed that I just want to give up on life altogether, you know? And I’m so very angry at God. So angry. I refuse to speak to Him. You know what I mean?” (Fitchett & Roberts, 2003) 13 Somatic Autonomy (ADL) Anger With God and Rehab Recovery 17 16 15 14 13 12 11 10 9 8 7 6 5 4 3 2 1 0 Admission 14.5 4 Mnth Follow-up 10.7 9.2 Anger (n=6) From: Fitchett, et al., Rehabilitation Psychology, 1999. 8.9 No anger (n=89) Negative Religious Coping (Brief RCOPE) not at all somewhat quite a bit a great deal 8. I wondered whether God had abandoned me. 0 1 2 3 9. I felt punished by God for my lack of devotion. 0 1 2 3 10. I wondered what I did for God to punish me. 0 1 2 3 11. I questioned God’s love for me. 0 1 2 3 12. I wondered whether my church had abandoned me. 0 1 2 3 13. I decided the devil made this happen. 0 1 2 3 14. I questioned the power of God. 0 1 2 3 Pargament et al, 1998 15 Religious Struggle and Emotional Distress Diabetic Outpatients psychological distress (PAID) .31* depressed mood (CMDI) .35** emotional symptoms (LHFQ) depression (POMS) CHF Outpatients Oncology Inpatients .30* .42*** .22* anxiety (POMS) .32* .16 hostility (POMS) .29* .16 emotional well-being (FACT-G) -.23* *p<.05, **p<.01, ***p<.001 Values are partial correlations, adjusted for age and gender. From Fitchett et al, 2004 16 Sample (study) Religious/spiritual struggle associated with 94 stem cell transplant pts, 3 mo f/u (Sherman et al., 2009) Greater anxiety Greater depression Worse emotional WB 300 breast cancer pts (stage I/II, IV), 12 mo f/u Worse mental health (MCS) More depressive sx (CESD) Lower life satisfaction (SWLS) (Herbert et al., 2009) (Park et al., 2008) Poorer adherence to instructions re smoking and alcohol 101 end stage CHF pts, 3 mo f/u (Park et al., 2011) More hospital days Poorer physical functioning 202 CHF pts, 6 mo f/u 17 ANGUISH Two Year Change in Religious Struggle and Its Effects on Outcomes Among Elderly Medically Ill Patients Any Religious Struggle At Baseline 2 Year Follow-Up Number No Struggle No No 94 39% reference group Transitory Struggle Yes No 40 17% ns Acute Struggle No Yes 44 18% ns 26% > depression > functional limitations < quality of life Group Chronic Struggle Yes Yes 61 Outcome at FollowPercent Up* *Models adjusted for demographic factors and baseline values. Source: Pargament et al, Journal of Health Psychology, 2004 ANGUISH Religious Struggle as a Predictor of Mortality (30%, 176/596) Adjusted RR = 1.06 95% CI = 1.01 - 1.11 model adjusted for: positive religious coping, demographic factors, physical health, mental health Pargament et al. 2001, Arch Intern Med Religious Struggle and Depression Mean of Depression-Dejection (POMS) 7 6 5 Religious Struggle recoded into 3 groups None (56%) 4 1-2 points (11%) 3+ points (33%) 3 0 1-2 3+ neg cope recode 3 gps N=100 oncology in-patients 20 Prevalence of Religious Struggle None 7 items scored "not at all" 123 52% Low 1 item scored "quite a bit" or "a great deal," or 1 or more items scored "somewhat" 80 34% Moderate 2 items scored "quite a bit" or "a great deal" 17 7% High 3 or more items scored "quite a bit" or "a great deal" 18 8% 238 patients with diabetes, cancer or congestive heart failure Fitchett et al., 2004 Prevalence of Religious Struggle Spiritual Struggle Item % Any Wondered what I did for God/a Higher Power to punish me 44% Felt punished by God/a Higher Power for my lack of devotion 41% Questioned God’s/a Higher Power’s love for me Decided the devil made this [asthma] happen 41% 41% Wondered whether God/a Higher Power had abandoned me 36% Question the power of God/a Higher Power Wondered whether my church had abandoned me 0 items endorsed 1-2 items endorsed 3+ items endorsed 32% 20% 26% 21% 53% 151 urban adolescents with asthma Cotton et al., 2011 Differences in RS by Patient Dx 5 4 2.7 3 2 2.1 1.8 1 0 diabetes (71) chf (70) oncology (97) Differences in RS by Age 5 4.1 4 2.9 3 2.1 2.1 1.7 2 1 0.3 0 < 40 (18) 41-50 (32) 51-60 (58) 61-70 (68) 71-80 (53) 81-90 (9) Trajectories of Religious Coping Positive Religious Coping Negative Religious Coping PrePosttransplant transplant Mean (SD) Mean (SD)* Increase (%, Mean Change) Decrease (%, Mean Change) 23.8 (7.9) 23.7 (7.6) 45% (4.9) 46% (4.9) 7.1 (1.7) 7.4 (2.9) 21% (3.3) 23% (2.0) *Differences in pre and post transplant mean scores were not significant. Average time between pre and post-transplant was 3.4 months (SD 2.9). N=94 myeloma patients who received autologous stem cell transplant Sherman et al, J Behav Med, 2009 ANGUISH Isn’t religious struggle really just about Fundamentalist beliefs about God? Jews Among 234 Jews (60% Orthodox), negative religious coping (JCOPE) was associated with more worry, anxiety and depression (Rosmarin et al 2009) ANGUISH Isn’t religious struggle really just about Fundamentalist beliefs about God? Secular Europeans & Aussies • 53% of 202 UK women w breast cancer (Thune-Boyle et al., 2011) • 100 women w recent dx of gyne cancer religious struggle significantly associated with higher depressive symptoms (p<.001) and anxiety (p=.03) (models adjusted for demographic, disease and other religion variables; Boscaglia et al, 2005) ‘Atheists’ Among 15 pts w adv cancer who report R/S not important to cancer experience, 6 (40%) reported 4 or more ‘religious concerns’ (Alcorn et al., 2012) ANGUISH Isn’t religious struggle really just depression? The size of the correlations between religious struggle and depression in our study (r from 0.22 to 0.42) suggest religious struggle is associated with but cannot be reduced to depression. Religious struggle predicts both poor recovery and mortality in models which adjust for depression. ANGUISH “I am told that God lives in me – and yet the reality of darkness and coldness and emptiness is so great that nothing touches my soul.” Newsweek 9/3/07 ANGUISH Religious/spiritual struggle compromises emotional adjustment to illness and quality of life may compromise recovery may increase risk of mortality Further Research on R/S Struggle Descriptive • Conceptualization and measurement • Screening • Prevalence in specific populations • Correlates • Trajectory Spiritual Care • Intervention What, if anything, helps people resolve R/S struggle? 3 Actions: 1. Refer for spiritual assessment re: possible RS struggle. 2. Spiritual care requested, make referral. 3. No action: no indication of RS struggle, no interest in spiritual care. Fitchett & Risk, 2009 Results from Spiritual Struggle Screening Protocol Number (%) of New Admissions Screened Cases of Spiritual Struggle Identified by Screening Cases of Spiritual Struggle Confirmed by Chaplain Assessment Phase I - PCTs 78 (49%) 4 4 Phase II - Medical Residents 10 (22%) 0 Phase IIIPsychologists 85 (79%) 8 7 Total 173 (55%) 12/173 (7%) 11/12 (92%) Study Phase and Screener Fitchett and Risk, Journal of Pastoral Care and Counseling, 2009 33 Prevalence of Religious Struggle Cancer patients at SCCA and Dana Farber Maine Medical Center ESRA-C (Electronic Self-Report AssessmentCancer) Group Belief Helpful 7 (50%) 171/700 (24%) cases were positive for religious struggle Belief Not Helpful 3 (21%) Belief in Past 1 (7%) Number (%) No Belief 3 (21%) 14 oncology patients, Maine Medical Center 34 Other Screening Tools Are you at peace? N=248 patients with cancer, COPD, CHF, ESRD (Steinhauser et al., 2006) Are you experiencing spiritual pain right now? “A pain deep in your being that is not physical” Yes = 61% N=57 patients with advanced cancer, prognosis < 6 months (Mako et al., 2006) Three Implications for Chaplains QUESTION IMPLICATION FOR SPIRITUAL CARE How did you decide which patients to see this week? Good stewards of scarce resources How did staff you work with Protocol for screening determine who to refer and who and referral not to refer? What evidence did you generate this week that your spiritual care Accountability and made a difference in measurable documentation patient outcomes? Comfort & Anguish