1. 1 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

2. 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.

3. Comfort & Anguish

4. 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

5. Risk of Mortality for More Frequent Worship Attenders No association

6. 6 “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.” Comfort

7. N=230 patients with advanced cancer. From Balboni et al, J of Clinical Oncology, 2007 Importance of Religion to Cancer Patients

8. 10 Most Commonly Used CAM Therapies in Past 12 Months 1. Prayer specifically for your own health 43.0% 2. Prayer by others for your health 24.4% 3. Natural products 18.9% 4. Deep breathing exercises 11.6% 5. Participation in prayer group for own health 9.6% 9.6% 6. Meditation 7.6% 7.6% 7. Chiropractic care 7.5% 7.5% 8. Yoga 5.1% 5.1% 9. Massage 5.0% 5.0% 10. Diet-based therapies 3.5% 3.5% N=31,004 adults, 2002 NHIS. From: Barnes et al. 2004.

9. Spiritual Well-Being and Quality of Life in Cancer Patients From Brady, Peterman, Fitchett, Mo, Cella. Psycho-Oncology, 1999

10. R/S and Quality of Life in Cancer Patients

12. Religious/spiritual coping is very common. Religious/spiritual coping takes different forms. Positive religious/spiritual coping enhances emotional well being and quality of life. Comfort

13. 13 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)

14. Anger With God and Rehab Recovery From: Fitchett, et al., Rehabilitation Psychology, 1999.

15. 15 Negative Religious Coping (Brief RCOPE) Pargament et al, 1998

16. 16 Religious Struggle and Emotional Distress From Fitchett et al, 2004

17. 17 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 (Herbert et al., 2009) Worse mental health (MCS) More depressive sx (CESD) Lower life satisfaction (SWLS) 202 CHF pts, 6 mo f/u (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

18. Two Year Change in Religious Struggle and Its Effects on Outcomes Among Elderly Medically Ill Patients * Models adjusted for demographic factors and baseline values. Source: Pargament et al, Journal of Health Psychology, 2004 ANGUISH

19. 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 ANGUISH

20. 20 Religious Struggle and Depression Religious Struggle recoded into 3 groups None (56%) 1-2 points (11%) 3+ points (33%) N=100 oncology in-patients

21. Prevalence of Religious Struggle 238 patients with diabetes, cancer or congestive heart failure Fitchett et al., 2004

22. Spiritual Struggle Item% Any Wondered what I did for God/a Higher Power to punish me44% Felt punished by God/a Higher Power for my lack of devotion41% Questioned God’s/a Higher Power’s love for me41% Decided the devil made this [asthma] happen41% Wondered whether God/a Higher Power had abandoned me36% Question the power of God/a Higher Power32% Wondered whether my church had abandoned me20% 0 items endorsed26% 1-2 items endorsed21% 3+ items endorsed53% 151 urban adolescents with asthma Cotton et al., 2011 Prevalence of Religious Struggle

23. Differences in RS by Patient Dx

24. Differences in RS by Age

25. Trajectories of Religious Coping *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 Pre- transplant Mean (SD) Post- transplant Mean (SD)* Increase (%, Mean Change) Decrease (%, Mean Change) Positive Religious Coping23.8 (7.9)23.7 (7.6)45% (4.9)46% (4.9) Negative Religious Coping7.1 (1.7)7.4 (2.9)21% (3.3)23% (2.0)

26. 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

27. 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

28. 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

29. “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

30. Religious/spiritual struggle compromises emotional adjustment to illness and quality of life may compromise recovery may increase risk of mortality ANGUISH

31. 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?

32. 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

33. 33 Results from Spiritual Struggle Screening Protocol Fitchett and Risk, Journal of Pastoral Care and Counseling, 2009

34. Prevalence of Religious Struggle Cancer patients at SCCA and Dana Farber ESRA-C (Electronic Self-Report Assessment- Cancer) 171/700 (24%) cases were positive for religious struggle 34 GroupNumber (%) Belief Helpful7 (50%) Belief Not Helpful3 (21%) Belief in Past1 (7%) No Belief3 (21%) 14 oncology patients, Maine Medical Center Maine Medical Center

35. 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)

36. 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 determine who to refer and who not to refer? Protocol for screening and referral What evidence did you generate this week that your spiritual care made a difference in measurable patient outcomes? Accountability and documentation

37. Comfort & Anguish