1

Comfort and AnguishThe Complex Role of

Religion in Coping with Illness

George Fitchett, DMin, PhD

Department of Religion, Health and Human Values

george_fitchett@rush.edu

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

No association

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

N=230 patients with advanced cancer.From Balboni et al, J of Clinical Oncology, 2007

Very important

68%

Somewhat important

20%Not

important12%

Importance of Religion to Cancer Patients

10 Most Commonly Used CAM Therapies in Past 12 Months

1. Prayer specifically for your own health1. Prayer specifically for your own health 43.0%43.0%

2. Prayer by others for your health2. Prayer by others for your health 24.4%24.4%

3. Natural products3. Natural products 18.9%18.9%

4. Deep breathing exercises4. Deep breathing exercises 11.6%11.6%

5. Participation in prayer group for own 5. Participation in prayer group for own healthhealth

9.6%9.6%

6. Meditation6. Meditation 7.6%7.6%

7. Chiropractic care7. Chiropractic care 7.5%7.5%

8. Yoga8. Yoga 5.1%5.1%

9. Massage9. Massage 5.0%5.0%

10. Diet-based therapies10. Diet-based therapies 3.5%3.5%N=31,004 adults, 2002 NHIS. From: Barnes et al. 2004.

Spiritual Well-Being and Quality of Life in Cancer Patients

34%

8%

69%

37%

0%

20%

40%

60%

80%

No Pain High Pain

Per

cen

t w

ho

'en

joy

life

very

mu

ch'

Low Faith High Faith

From Brady, Peterman, Fitchett, Mo, Cella. Psycho-Oncology, 1999

Study Sample, Design Religion Measure Results

Brady, et al, 1999

n=1,610, diverse (medically, racially, SES) out-patients with cancer (83%) and HIV (17%)

FACIT-SpWB (SWB)

SWB has a positive effect (effect size = 0.5) on contentment with QoL, independent of pain, fatigue, physical, emotional, and social well-being

Cotton et al, 1999

n=142 women with breast cancer, avg time since dx, 14 mo, 84% white, 92% self-rated heath excellent, 65% no active religious practices.

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).

Daugherty et al, 2004

Convenience sample of n=162 patients in Phase I clinical trials.

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.

R/S and Quality of Life in Cancer Patients

http://www.cincinnatichildrens.org/

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

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)

Anger With God and Rehab Recovery

9.2 8.9

10.7

14.5

0123456789

1011121314151617

Anger (n=6) No anger (n=89)

So

ma

tic

Au

ton

om

y (

AD

L)

Admission

4 Mnth Follow-up

From: Fitchett, et al., Rehabilitation Psychology, 1999.

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Negative Religious Coping (Brief RCOPE)

Pargament et al, 1998

not

at all some-

what 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

16

Religious Struggle and Emotional Distress

Diabetic Outpatients

CHF Outpatients

Oncology Inpatients

psychological distress (PAID) .31*

depressed mood (CMDI) .35**

emotional symptoms (LHFQ) .30*

depression (POMS) .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

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Sample (study)

Religious/spiritual struggle associated with

94 stem cell transplant pts, 3 mo f/u (Sherman et al., 2009)

Greater anxietyGreater depressionWorse 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 daysPoorer physical functioning

Any Religious Struggle At

Group Baseline 2 Year

Follow-Up Number Percent Outcome at Follow-Up*

No Struggle No No 94 39% reference group

Transitory Struggle Yes No 40 17% ns

Acute Struggle No Yes 44 18% ns

Chronic Struggle

Yes Yes 61 26% > depression > functional limitations < quality of life

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

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

Religious Struggle and Depression

neg cope recode 3 gps3+1-20

Mea

n o

f D

epre

ssio

n-D

ejec

tio

n (

PO

MS

)

7

6

5

4

3

Religious Struggle recoded into 3 groups

None (56%)

1-2 points (11%)

3+ points (33%)

N=100 oncology in-patients

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%

Moderate2 items scored "quite a bit" or "a great deal" 17 7%

High3 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

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 41%Decided the devil made this [asthma] happen 41%

Wondered whether God/a Higher Power had abandoned me 36%

Question the power of God/a Higher Power 32%Wondered whether my church had abandoned me 20% 0 items endorsed 26% 1-2 items endorsed 21% 3+ items endorsed 53%151 urban adolescents with asthmaCotton et al., 2011

Prevalence of Religious Struggle

Differences in RS by Patient Dx

1.8

2.7

2.1

0

1

2

3

4

5

diabetes (71) chf (70) oncology (97)

Differences in RS by Age

4.1

2.9

2.1 2.11.7

0.3

0

1

2

3

4

5

< 40 (18) 41-50 (32) 51-60 (58) 61-70 (68) 71-80 (53) 81-90 (9)

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 transplantSherman et al, J Behav Med, 2009

Pre-transplant Mean (SD)

Post-transplant

Mean (SD)*

Increase (%, Mean Change)

Decrease (%, Mean Change)

Positive Religious Coping 23.8 (7.9) 23.7 (7.6) 45% (4.9) 46% (4.9)

Negative Religious Coping 7.1 (1.7) 7.4 (2.9) 21% (3.3) 23% (2.0)

Isn’t religious struggle really just about Fundamentalist beliefs about God?

JewsAmong 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

ANGUISH

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

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Results from Spiritual Struggle Screening Protocol

Fitchett and Risk, Journal of Pastoral Care and Counseling, 2009

Study Phase and Screener

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 III- Psychologists

85 (79%) 8 7

Total 173 (55%) 12/173 (7%) 11/12 (92%)

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

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Group Number (%)

Belief Helpful 7 (50%)

Belief Not Helpful 3 (21%)

Belief in Past 1 (7%)

No Belief 3 (21%)14 oncology patients, Maine Medical Center

Maine Medical Center

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

QUESTIONIMPLICATION 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

Comfort & Anguish