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Spirituality, Religion, and Health Interest Group Hospital of the University of Pennsylvania February 5, 2014 Spirituality & Oncology: Views from Research Chaplain John W. Ehman University of Pennsylvania Medical Center – Penn Presbyterian Philadelphia, PA 2/5/14. Research is a
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Spirituality, Religion, and Health Interest Group Hospital of the University of Pennsylvania February 5, 2014 Spirituality & Oncology: Views from Research Chaplain John W. Ehman University of Pennsylvania Medical Center – Penn Presbyterian Philadelphia, PA 2/5/14
Research is a “way of knowing”
Health care research has favored an approach that focuses on spirituality/religion as… … a value basis for personal meaning-making (e.g., understanding illness), coping with stress/crises, and decision-making [ However, there is growing interest in how spiritual practice may have functional, physiological effects.]
Patients’ Spiritual/Religious Beliefs and Health Care Decision-Making In a University of Pennsylvania study of pulmonary outpatients (n=177), including lung cancer patients nearly half said that they had spiritual/religious beliefs that would influence their health care decision-making whenever they may became “gravely” ill. -- Ehman, J. W., et al., “Do patients want physicians to inquire…,” Archives of Internal Medicine 159, no. 15 (1999): 1803-1806
Treatment Decision Factors Ranking of the importance of treatment decision factors by oncology patients: 1) Cancer doctor’s recommendation 2) Faith in God 3) Ability to cure 4) Side effects 5) Family doctor’s recommendation 6) Spouse’s input 7) Children’s input --Silvestri, et al., “Importance of faith on medical decisions regarding cancer care,” Journal of Clinical Oncology 21, no. 7 (April 1, 2003): 1379-1382
Brief RCOPE 1) Looked for a stronger connection with God 2) Sought God’s love and care. 3) Sought help from God in letting go of my anger. 4) Tried to put my plans into action together with God. 5) Tried to see how God might be trying to strengthen me in this situation. 6) Asked forgiveness of my sins. 7) Focused on religion to stop worrying about my problems. ---------------------------------------------------------------------------- 8) Wondered whether God had abandoned me. 9) Felt punished by God for my lack of devotion. 10) Wondered what I did for God to punish me. 11) Questioned God’s love for me. 12) Wondered whether my church had abandoned me. 13) Decided the devil made this happen. 14) Questioned the power of God.
Religious Struggle & Mortality 2-year longitudinal study of 596 patients; 176 died Brief RCOPE items significantly associated with an increased risk of dying: - Wondered whether God had abandoned me (28%) - Questioned God’s love for me (22%) - Decided the devil made this happen (19%) The mortality risk appears to be focused those who engage in negative religious coping on a chronic basis. --Pargament, K. I., Koenig, H. G., et al., "Religious struggle as a predictor of mortality…,“ Archives of Internal Medicine 161, no. 15 (August 13-27, 2001): 1881-1885 --Pargament, K. I., Koenig, H. G., et al., "Religious coping methods as predictors," Journal of Health Psychology 9, no. 6 (November 2004): 713-730
Brief RCOPE 1) Looked for a stronger connection with God 2) Sought God’s love and care. 3) Sought help from God in letting go of my anger. 4) Tried to put my plans into action together with God. 5) Tried to see how God might be trying to strengthen me in this situation. 6) Asked forgiveness of my sins. 7) Focused on religion to stop worrying about my problems. ---------------------------------------------------------------------------- 8) Wondered whether God had abandoned me. 9) Felt punished by God for my lack of devotion. 10) Wondered what I did for God to punish me. 11) Questioned God’s love for me. 12) Wondered whether my church had abandoned me. 13) Decided the devil made this happen. 14) Questioned the power of God.
Research increasingly indicates health-positive effects of religion/spirituality. For example: • lower rates of coronary artery disease -- in at least 12 of 19 studies (63%) • lower cardiovascular reactivity and greater heart rate variability -- in at least 11 of 16 studies (69%) • lower blood pressure and generally less hypertension -- in at least 36 of 63 studies (63%) • better immune function -- in at least 14 of 25 studies (56%) • lower cancer rate and better outcomes -- in at least 14 of 25 studies (56%) --See: Koenig, H.G, et al., Handbook of Religion and Health, 2001/2011; and Koenig, H.G., Testimony to the US House of Representatives Subcommittee on Research and Science Education, 9/18/08
Theoretical Model of How Religion Affects Physical Health --adapted from Koenig, et al., Hand- book ofReligion and Health, 2001 Religion also affects Childhood Training, Adult Decisions, and Values & Character; which then in turn affect mental health, social support, and health behaviors. Stress Hormones Infection Mental Health Cancer Immune System R E L I G I O N Heart Disease Hyper- tension Social Support Autonomic Nervous System Stroke Stomach & Bowel Disease Detection and Treatment Compliance Health Behaviors Liver & Lung High Risk Behaviors (smoking, drugs) Accidents & STDs
Other theoretical models emphasize how spiritual beliefs may help people keep stressors in perspective and control or how spiritual practices may be a means for relaxation. Research suggests that some forms of meditation may actually change the way the brain processes threat analyses and can protect against rumination --- to the point that meditative practice might be seen to affect cell longevity via lowered stress.
Patients’ Spiritual Needs in Oncology and Serious Illness
Variety in Patients’ Sense of “Spiritual Needs” Hospice patients were first asked: “What does the word spiritual mean to you personally?” and then “What needs can you identify related to your spirituality as you described it?” Need for Religion: to pray, go to services, read/use scripture, read/use inspirational material, sing/listen to music Need for Companionship: need to be with family and friends, talk with others, care for others, be with children Need to Experience Nature: to look outside, be outside, have flowers Need for Positive Outlook: to see smiles of others, laugh, think happy thoughts, take one day at a time Need for Involvement and Control: to have input into own life, be as independent as possible, be involved with family activities, have information about own care, be helped by others, have things stay the same Need to Finish Business: to do a life review, finish life tasks, come to terms with the present situation, resolve bitter feelings --Hermann, C. P., "Spiritual needs of dying patients: a qualitative study," Oncology Nursing Forum 28, no. 1 (Jan-Feb 2001): 67-72
Study of Perceived/Met Spiritual Needs at EOL Perceived (%)Met (%) Laugh 100 65 Think happy thoughts 98 76 See the smiles of others 97 81 Be with family 96 65 Be with friends 96 64 Pray 95 96 Talk about day-to-day things 95 82 Have information about family and friends 88 77 Be with people who share my spiritual beliefs 88 74 Go to religious services 85 30 Be around children 83 72 Sing or listen to music 80 80 Read a religious text 80 64 Talk with someone about spiritual issues 79 75 Read inspirational materials 68 69 Use phrases from religious text 65 86 Use inspirational materials 59 86 --from: Hermann, C. P., “The degree to which spiritual needs of patients near the end of life are met,” Oncology Nursing Forum 34, no. 1 (Jan 2007): 70-78
Study of Perceived/Met Spiritual Needs at EOL Perceived (%)Met (%) Laugh 100 65 Think happy thoughts 98 76 See the smiles of others 97 81 Be with family 96 65 Be with friends 96 64 Pray 95 96 Talk about day-to-day things 95 82 Have information about family and friends 88 77 Be with people who share my spiritual beliefs 88 74 Go to religious services 85 30 Be around children 83 72 Sing or listen to music 80 80 Read a religious text 80 64 Talk with someone about spiritual issues 79 75 Read inspirational materials 68 69 Use phrases from religious text 65 86 Use inspirational materials 59 86 --from: Hermann, C. P., “The degree to which spiritual needs of patients near the end of life are met,” Oncology Nursing Forum 34, no. 1 (Jan 2007): 70-78
Study of Perceived/Met Spiritual Needs at EOL Perceived (%)Met (%) Laugh 100 65 Think happy thoughts 98 76 See the smiles of others 97 81 Be with family 96 65 Be with friends 96 64 Pray 95 96 Talk about day-to-day things 95 82 Have information about family and friends 88 77 Be with people who share my spiritual beliefs 88 74 Go to religious services 85 30 Be around children 83 72 Sing or listen to music 80 80 Read a religious text 80 64 Talk with someone about spiritual issues 79 75 Read inspirational materials 68 69 Use phrases from religious text 65 86 Use inspirational materials 59 86 --from: Hermann, C. P., “The degree to which spiritual needs of patients near the end of life are met,” Oncology Nursing Forum 34, no. 1 (Jan 2007): 70-78
Unmet Spiritual Needs A survey of 90 advanced cancer patients in Florida revealed great variance in a sense of unmet spiritual needs, but by far the most salient unmet spiritual need was attendance at religious services. (It was identified over 3.5 times more than the next most salient unmet spiritual need: prayer.) -- Hampton, D. M., et al., "Spiritual needs of persons with advanced cancer," American Journal of Hospice and Palliative Care 24, no. 1 (Feb-Mar 2007): 42-48
Correlates of Unmet Spiritual Needs A study of 150 advanced cancer patients in North Carolina found that 28% felt they received less spiritual care overall than they needed, and these individuals turned out to be at significantly greater risk of depressive symptoms and poorer sense of purpose in life, meaning and peace. -- Pearce, M. J., et al., "Unmet spiritual care needs impact emotional and spiritual well-being in advanced cancer patients," Supportive Care in Cancer 20, no. 10 (Oct 2012): 2269-2276
Spiritual Distress Across the Cancer Trajectory -- Murray, S. A., et al., "Patterns of social, psychological, and spiritual decline toward the end of life...,” Journal of Pain and Symptom Management 34, no. 4 (Oct 2007): 393-402
Dynamics of a Deferring Religious Coping Style A Wisconsin study using data from a sample of 192 breast cancer patients shows how a deferring religious coping style can simultaneously lead to positive and negative health outcomes. Deferring control to God led to lower levels of breast cancer concern (e.g., anxiety) but also lower levels of some problem-focused coping (e.g., taking action), which in turn led to lower quality of life. The significant indirect negative effect of deferring coping was appeared to work through the lowering of action but not planning. -- McLaughlin, B., et al., "It is out of my hands…,” Psycho-Oncology 22, no. 12 (Dec 2013): 2747-2754
Dynamics of a Deferring Religious Coping Style --adapted from McLaughlin, B., et al., "It is out of my hands…,” Psycho-Oncology 22, no. 12 (Dec 2013): 2747-2754
Patients’ Use of Prayer for Pain Control A cross-sectional sample of 157 inpatients were asked: “Which of the following pain control methods (if any) have you used since you were admitted?” Pain Pills 67% said “yes” Prayer 62 Pain Meds in IV 54 Pain Injections 51 Relaxation 27 top 10 answers Distraction 24 from 17 choices PCA Pump 21 Heat Application 18 Touch 16 Cold Application 13 --McNeill, et al., “Assessing Clinical Outcomes…,” Journal of Pain and Symptom Management 16, no. 1 (July 1998): 29-40
Spiritual Practice & Physical Pain A study of college-age students who were taught either a spiritual meditation, secular meditation, or relaxation technique; which they practiced for 20-minutes a day for 2 weeks. The spiritual meditation group was able to tolerate an induced pain experience* almost twice as long as did the other two groups, though pain perception was reportedly not altered. --Wachholtz & Pargament, "Is spirituality a critical ingredient…?“ Journal of Behavioral Medicine 28, no. 4 (August 2005): 369-384 * Holding one’s hand in a cold water bath of 2°C
Effect of Illness and Treatment on Patients’ Spirituality
Mystical Experiences among Hospital Patients A survey of 48 hospital patients found that 25% had experienced some form of mystical spiritual experience while receiving treatment. -- Witte, A. S., et al., "Mystical experience in the context of health care." Journal of Holistic Nursing 26, no. 2 (June 2008): 84-92 An in-depth phenomenological study of seven survivors of prolonged mechanical ventilation, all seven volunteered experiences of “angelic encounters” (e.g., visits from deceased relatives) that had given them encouragement. -- Arslanian-Engoren, C. & Scott, L. D., "The lived experience of survivors of prolonged mechanical ventilation…," Heart and Lung 32, no. 5 (Sep-Oct 2003): 328-334
Cancer Experiences and Spiritual Change A 2010 study at the University of Pennsylvania of 614 cancer survivors who were 3-4.5 years postdiagnosis: • 40.3% experienced highly positive spiritual changes through the cancer experience • 36.1% said they experienced a negative spiritual change -- Mao, J. J., et al., "Positive changes, increased spiritual importance, and complementary and alternative medicine (CAM) use among cancer survivors," Integrative Cancer Therapies 9, no. 4 (Dec 2010): 339-347
Spiritual Growth/Decline after Cancer Diagnosis Piloting of a measure of spiritual transformation with 244 cancer patients at medical clinics in Pittsburgh, PA, found that: • Spiritual Growth tended to be higher when the patient's cancer was a recurrence or advanced and was associated with positive spiritual coping. • Spiritual Decline was associated with negative spiritual coping, depressive symptoms, and negative affect. • Both Spiritual Growth and Spiritual Decline were less dynamic in older patients than in younger patients. “...[W]hen a trauma occurs, the spiritual aspects of the individual’s world view and related resources (e.g., practices and relationships) may be threatened. This threat initiates a spiritual struggle (i.e., spiritual coping) in order to either 'conserve or transform' one’s sense of the spiritual or sacred aspects of life.” -- Cole, B. S., et al., "Assessing spiritual growth and spiritual decline following a diagnosis of cancer: reliability and validity of the Spiritual Transformation Scale," Psycho-Oncology 17, no. 2 (February 2008): 112-121.
Posttraumatic Growth in Leukemia Patients Patients were surveyed after being newly diagnosed with leukemia, and again roughly a month afterward and a third time roughly three months afterward. • Greater posttraumatic growth was associated with younger age, increased deliberate rumination, and degree of challenge to core beliefs. Regarding the latter, the researchers note the theory that growth does not occur due to the stressor itself, but from the struggle and re-calibration of the individual’s assumptive world following the stressor. • Distress was associated with greater perceived threat, lower deliberate rumination, higher intrusive rumination, and lower spiritual well-being. -- Danhauer, S. C., et al., "A longitudinal investigation of posttraumatic growth in adult patients undergoing treatment for acute leukemia," Journal of Clinical Psychology in Medical Settings 20, no. 1 (March 2013): 13-24
Study of Experience/Change in Breast Cancer Patients At Time of Diagnosis • Shock and fear of dying • Sense of aloneness • Trying to maintain self-identity • Compelled to reach out for support from others and God • Desiring to help others or feel needed by others (including congregations) Four to Seven Months After Diagnosis • Feeling more like their former self • Importance of supportive relationships (including congregations) • Changes in insight facilitated behavioral changes • Fears about recurrence Fourteen–Eighteen Months After Diagnosis • Finding ways to prevent recurrence • Defining a new normal self • Change in priorities and relationships (to others, God, and congregations) --Coward, D. D., et al., "Resolution of spiritual disequilibrium by women newly diagnosed with breast cancer," Oncology Nursing Forum 31, no. 2 (March-April 2004): E24-31
Study of Experience/Change in Breast Cancer Patients At Time of Diagnosis • Shock and fear of dying • Sense of aloneness • Trying to maintain self-identity • Compelled to reach out for support from others and God • Desiring to help others or feel needed by others (including congregations) Four to Seven Months After Diagnosis • Feeling more like their former self • Importance of supportive relationships (including congregations) • Changes in insight facilitated behavioral changes • Fears about recurrence Fourteen–Eighteen Months After Diagnosis • Finding ways to prevent recurrence • Defining a new normal self • Change in priorities and relationships (to others, God, and congregations) --Coward, D. D., et al., "Resolution of spiritual disequilibrium by women newly diagnosed with breast cancer," Oncology Nursing Forum 31, no. 2 (March-April 2004): E24-31
Spiritual Struggle and Coping Studies of oncology and other patients, using the Brief RCOPE • Roughly 15% of patients may experience a level of spiritual struggle that could risk hurting medical outcomes. • Negative religious coping can co-exist with positive religious coping, even at high levels. • Younger patients indicate greater levels of spiritual struggle. -- Fitchett, et al., "Religious struggle: prevalence…," International Journal of Psychiatry in Medicine 34, no. 2 (2004): 179-196
Spiritual Distress from a Chaplain’s Assessment A study of 165 advanced cancer patients in an acute palliative care unit in Houston, TX, found that 44% indicated spiritual distress (by a chaplain’s assessment). Younger age was significantly and independently associated with spiritual distress. Younger patients were more likely to report despair, brokenness, helplessness, and meaninglessness. --Hui, D., et al., “Frequency & correlates of spiritual distress…,” American Journal of Hospice & Palliative Medicine 28, no. 4 (June 2011): 264-270
john.ehman@uphs.upenn.edu www.uphs.upenn.edu/pastoral www.ACPEresearch.net
Dynamics of a Deferring Religious Coping Style --McLaughlin, B., et al., "It is out of my hands…,” Psycho-Oncology 22, no. 12 (Dec 2013): 2747-54