WAYS THAT CLINICAL STAFF MAY SUPPORT PATIENTS SPIRITUALLY Chaplain John Ehman Penn Presbyterian Medical Center john.ehma

WAYS THAT CLINICAL STAFF MAY SUPPORT PATIENTS SPIRITUALLY Chaplain John Ehman Penn Presbyterian Medical Center john.ehman@uphs.upenn.edu 5/5/10

Presentation Plan ● Terminology & the parameters of spirituality ● How does spirituality play into illness/treatment …and vice versa? ● Importance of the patient's sense of spirituality ● Practical strategies for spiritual support ● Assessment issues ● Special issues

Polls re: Religion/Spirituality in the US • 90-96% of adults in the US say they “believe in God” • over 40% say they attend religious services regularly, usually at least once a week • 50-75% say religion is “very important” in their lives • 90% say they pray, and most (54-75%) say they pray at least once a day • over 80% say that “God answers prayers” • 79-84% say they believe in “miracles” and that “God answers prayers for healing someone with an incurable illness” --These percentages are summary characterizations of numerous national surveys showing fairly consistent results across time

Terminology: Spirituality or Religion The language is sometimes ambiguous and confusing.

Assessment Terminology in Medline-Indexed Articles (1998-2008) --John Ehman, 12/7/09

Variety in Patients’ Sense of “Spiritual Needs” Nineteen hospice patients were asked: “What does the word spiritual mean to you personally?” and “What needs can you identify related to your spirituality as you described it?” --p. 69 of Hermann, C. P., "Spiritual needs of dying patients: a qualitative study," Oncology Nursing Forum 28, no. 1 (Jan-Feb 2001): 67-72

Definitions by Harold Koenig, MD SPIRITUALITY is the personal quest for understanding answers to ultimate questions about life, about meaning, and about relationship with the sacred or transcendent, which may (or may not) lead to or arise from the development of religious rituals and the formation of community. RELIGION is an organized system of beliefs, practices, rituals, and symbols designed to facilitate closeness to the sacred or transcendent (God, higher power, or ultimate truth/reality). --see p. 844 of Moreira-Almeida & Koenig, “Retaining the meaning of the words religiousness and spirituality…,” Social Science & Medicine 63, no. 4 (Aug 2006): 843-845

How do we in health care tend to think of the interplay between the spiritual aspects of patients’ lives and patients’ experiences of illness and treatment?

Research on Spirituality & Health Tends to Focus on Spirituality as a Resource for Health Spirituality as a: 1) a ground for “religious” social support 2) a value basis for personal meaning-making [and therefore understanding illness and coping with crises] and decision-making 3) a context for behavior that can influence the way the body works (e.g., meditation that can affect physiological reactions to stress)

Spirituality  Illness and Treatment ● How might a patient’s spiritual/religious life help that person to meet the challenges of illness & treatment, or how might spirituality/religion be problematic to meeting such challenges? …but also… ● How might the experience of illness & treatment, affect a patient spiritually?

→ Spirituality → Illness & Treatment

Examples re: Grave Illness & Treatment

Spirituality  Grave Illness & Treatment ● Congregational connections may bring social support and practical assistance (or constrict the patient by the imposition of the group’s norms)

Spirituality  Grave Illness & Treatment ● Congregational connections may bring social support and practical assistance (or constrict the patient by the imposition of the group’s norms) ● Patient's own clergy may bring "authoritative" support and guidance for coping (or may give "simple" answers, poor guidance, or even chastisement)

Spirituality  Grave Illness & Treatment ● Congregational connections may bring social support and practical assistance (or constrict the patient by the imposition of the group’s norms) ● Patient's own clergy may bring "authoritative" support and guidance for coping (or may give "simple" answers, poor guidance, or even chastisement) ● Scriptures may help patients find focus and direction amid crisis (or, as complex documents, scriptures may be confusing or disturbing)

Spirituality  Grave Illness & Treatment ● Congregational connections may bring social support and practical assistance (or constrict the patient by the imposition of the group’s norms) ● Patient's own clergy may bring "authoritative" support and guidance for coping (or may give "simple" answers, poor guidance, or even chastisement) ● Scriptures may help patients find focus and direction amid crisis (or, as complex documents, scriptures may be confusing or disturbing) ● Favorite sources of meaning and joy may bring encouragement and relief (or may play into the patient's feelings of loss)

Spirituality  Grave Illness & Treatment ● Congregational connections may bring social support and practical assistance (or constrict the patient by the imposition of the group’s norms) ● Patient's own clergy may bring "authoritative" support and guidance for coping (or may give "simple" answers, poor guidance, or even chastisement) ● Scriptures may help patients find focus and direction amid crisis (or, as complex documents, scriptures may be confusing or disturbing) ● Favorite sources of meaning and joy may bring encouragement and relief (or may play into the patient's feelings of loss) ● Religious rituals may bring a sense of assurance and "deepening“ (but are often disrupted by illness and treatment)

Spirituality  Grave Illness & Treatment ● Congregational connections may bring social support and practical assistance (or constrict the patient by the imposition of the group’s norms) ● Patient's own clergy may bring "authoritative" support and guidance for coping (or may give "simple" answers, poor guidance, or even chastisement) ● Scriptures may help patients find focus and direction amid crisis (or, as complex documents, scriptures may be confusing or disturbing) ● Favorite sources of meaning and joy may bring encouragement and relief (or may play into the patient's feelings of loss) ● Religious rituals may bring a sense of assurance and "deepening“ (but are often disrupted by illness and treatment) ● Prayer/meditation may bring peace and encouragement (but some patients find prayer/meditation difficult)

Grave Illness & Treatment  Spirituality ● Patients may experience “stress-related growth” that is spiritual in nature or is spiritually enriching (or they may feel diminished, cut off, and beaten by illness/treatment and spiritually withered)

Grave Illness & Treatment  Spirituality ● Patients may experience “stress-related growth” that is spiritual in nature or is spiritually enriching (or they may feel diminished, cut off, and beaten by illness/treatment and spiritually withered) ● Patients may find an increase in spiritual resources offered to them (or find a narrowing of opportunities to seek spiritual resources, especially as social interaction can lessen and become stilted)

Grave Illness & Treatment  Spirituality ● Patients may experience “stress-related growth” that is spiritual in nature or is spiritually enriching (or they may feel diminished, cut off, and beaten by illness/treatment and spiritually withered) ● Patients may find an increase in spiritual resources offered to them (or find a narrowing of opportunities to seek spiritual resources, especially as social interaction can lessen and become stilted) ● Questions of “what really matters” can open some gravely ill patients to affirm who they are “at the core,” spiritually (or can lead them to question long-held personal/spiritual/religious beliefs)

Grave Illness & Treatment  Spirituality ● Patients may experience “stress-related growth” that is spiritual in nature or is spiritually enriching (or they may feel diminished, cut off, and beaten by illness/treatment and spiritually withered) ● Patients may find an increase in spiritual resources offered to them (or find a narrowing of opportunities to seek spiritual resources, especially as social interaction can lessen and become stilted) ● Questions of “what really matters” can open some gravely ill patients to affirm who they are “at the core,” spiritually (or can lead them to question long-held personal/spiritual/religious beliefs) ● Patients may find in their self-experience of resilience an affirmation of their spirituality (or may see in their self-perceived weaknesses, such as feelings of fearfulness, a spiritual “failure”)

Grave Illness & Treatment  Spirituality ● Patients may experience “stress-related growth” that is spiritual in nature or is spiritually enriching (or they may feel diminished, cut off, and beaten by illness/treatment and spiritually withered) ● Patients may find an increase in spiritual resources offered to them (or find a narrowing of opportunities to seek spiritual resources, especially as social interaction can lessen and become stilted) ● Questions of “what really matters” can open some gravely ill patients to affirm who they are “at the core,” spiritually (or can lead them to question long-held personal/spiritual/religious beliefs) ● Patients may find in their self-experience of resilience an affirmation of their spirituality (or may see in their self-perceived weaknesses, such as feelings of fearfulness, a spiritual “failure”) ● The experience of loss of control can shift a patient’s sense of locus of control from himself/herself to a “higher power” (or can create a sense of sheer vulnerability and “abandonment by God”)

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

The importance of the interplay between spirituality and health for patients generally is matched by the difficulty of predicting that interplay in the lived experience of patients individually. So, what strategy might providers use in order to support individuals spiritually?

A Pastoral Care Approach …with Implications While chaplains clearly recognize the importance of theology, the general approach of pastoral care is not to emphasize intellectual issues (e.g., theological questions) but rather to attend to the experiential and emotional issues or dynamics that affect the patient’s sense of meaning, quest, and relationship. Chaplains try to follow the lead of the patient, to help him/her feel heard, connected, and safe to venture wherever he/she has need. Identified needs that are not explicitly religious/spiritual may still be spiritually relevant for the patient. This approach may have implications for spiritual aspects of care by physicians, nurses, social workers, and others.

Working from certain key elements of this “pastoral care” approach allows providers to support patients spiritually… …without needing to talk "theology“ …without needing to act as a spiritual counselor …without blurring professional roles/boundaries …without having to give answers to "ultimate" questions

Health care providers can support patients spiritually by: ● acknowledging patients’ statements of meaning, quest, and relationship ● affirming the emotional nature of our humanity ● listening for indications of spiritual distress, and thinking about referral options ● expressing interest in the patient’s particular spiritual resources & issues pertinent to the provider-patient relationship

MEDS

Supporting Patients Spiritually with MEDS M = acknowledge statements of meaning/quest/relationship E= affirm the emotional nature of our humanity D = look and listen for indications of spiritual distress S = express an interest in the patient’s particular spiritual resources & issues pertinent to the provider-patient relationship, and consider options for explicit inquiry

M = acknowledge statements of meaning/quest/relationship E = affirm the emotional nature of our humanity D = look and listen for indications of spiritual distress S = express an interest in the patient’s particular spiritual resources & issues pertinent to the provider-patient relationship, and consider options for explicit inquiry

Acknowledging Patients’ Statements of Meaning, Quest, and Relationship Patients may make overtly religious/spiritual statements of meaning, quest, and relationship, but often the expression is more subtle and indirect. I.e.: “God has a plan,” “I know God’s with me,” or “God didn’t bring me this far to let me down now”; but also, “I'm sure learning a lot,” “Something like this changes your priorities,” or “I'm so thankful for my family.“ Acknowledgement can be made as simply as repeating or paraphrasing the patient's statement or by saying, for example: "I appreciate your perspective," "You're finding your way ahead through this," "You're in touch with what's important," or "This is a journey.“ --Such statements generally open up communication

M = acknowledge statements of meaning/quest/relationship E= affirm the emotional nature of our humanity D = look and listen for indications of spiritual distress S = express an interest in the patient’s particular spiritual resources & issues pertinent to the provider-patient relationship, and consider options for explicit inquiry

Emotion and Spirituality Emotion may be said to be the "heart" of spirituality, and an affirmation of emotion can help patients express spiritual need. E.g.:, patients who are ashamed of their anxiousness or tears may be blocked from expressing or exploring spiritual issues, or emotional lability may be experienced as a spiritual problem. Affirmation of emotion can occur through acknowledgement and normalization. For instance: ● “Your tears show how deeply you feel, how important things are to you.” ● “There's so much about what’s happening that’s scary.” ● “Illness and treatment can be such an emotional rollercoaster.” ● “Your spirit feels heavy. I want to affirm how well you're managing in all of this.” ● “I honor your feelings.” --Listen for spiritual content in patients’ responses.

Spiritual Distress Any sign of physical or psychological distress may have connections to a patient's spirituality, including unexplained or unmanaged pain, trouble sleeping, anxiety or agitation. Spiritual distress can have mundane indicators.

Conversational Hints of Possible Spiritual Distress 1) Interruption of religious practices / rituals of every kind (e.g., congregational or social religious activities, prayer) 2) Issues of meaning amid change (e.g., questions/statements about the meaning or purpose of his/her pain or illness or of life in general, expressions about a sense of injustice, overwhelming salience of loss, hopelessness, abandonment/withdrawal from relationships or groups) 3) Religiously associated expressions (e.g., mentions illness as "deserved" and/or "punishment," talks of "evil" or "the enemy," describes self as "bad" or "sinful," uses colloquial expressions with religious overtones like "this is hell," repetition of "forgiveness" language, refers to death as "judgment day," or wonders about "God's plan")

Spirituality & Health Research and the Brief RCOPE Assessment for Positive/Negative Religious Coping 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 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. Positive Coping Negative Coping / Spiritual Distress

Be especially attentive to how physical issues may be problematic to spiritual activities: ● Barriers to attending congregational activities (including treatments or check-ups over religious holidays) ● Inability to kneel [--also a falling hazard] ● Difficulty using hands (e.g., to make religious gestures or to hold religious objects or scriptures) ● Trouble seeing (e.g., to read religious material) ● Trouble hearing (e.g., to listen to music or religious broadcasts or speak on the phone with friends/clergy) ● Pain and medication issues (e.g., affecting meditation/prayer) ● Body image issues affecting a sense of "cleanliness" (including difficulty washing)

An Inquiry about Spiritual/Religious Beliefs ● Provider initiative may be necessitated by patients' reluctance to introduce the topic --because of fears of provider reaction, lack of salience about the subject during often highly directed clinical interactions, or uncertainty about how to talk about beliefs outside of a familiar religious context. ● Inquiry can bring to light important information affecting how physicians and patients work together, especially how patients may make health care decisions. ● A carefully worded inquiry about spiritual/religious beliefs may be experienced as a significant support, and that could have larger ramifications for provider-patient communication and relationship.

In a Penn study about physician inquiry regarding patients’ spiritual/religious beliefs, with a sample of 177 pulmonary outpatients: • Nearly half of patients may have spiritual/religious beliefs that would influence their health care decision-making if they became gravely ill. • Two-thirds of patients would welcome a carefully worded exploratory question about spiritual or religious beliefs (E.g., “Do you have spiritual or religious beliefs that may affect your medical decisions?”) • Two-thirds of patients think that such an inquiry by a physician would make them trust the physician more. --Ehman, J. W., et al., “Do patients want physicians to inquire…, Archives of Internal Medicine 159, no. 15 (1999): 1803-1806

Health care provider inquiries about spirituality should… …implicitly or explicitly indicate that the purpose is to provide medical care that honors patients’ beliefs and values (and that the question is not a judgment about the patient’s values) …give patients an “easy way out” if they don’t want to talk about their spirituality Note the construction of a question like: “Do you have religious or spiritual concerns that may affect your medical care?”

“Are You at Peace?” One Item to Probe Spiritual Concerns at the End of Life 2006 Construct Validity Study (n=248) Example: Physician: How have you been doing? Patient: Okay, I guess. Physician: I'm wondering how you're doing living with your illness. I sometimes hear people talk about whether or not they're at peace. Do you feel that you are at peace in your life right now? Patient: Well, when you ask it that way, no. Physician: Tell me more. Patient: I just can't seem to get a handle on all of this…. Steinhauser, K. E., et al., “'Are you at peace?': one item to probe spiritual concerns at the end of life.” Archives of Internal Medicine 166, no. 1 (Jan 9, 2006): 101-105

Practice of Taking a "Spiritual History" ● Should be done only with care and practice ● Best done in a conversational style ● Possible to do quickly, but it should not be hurried The model most widely used by physicians is FICA: F = The patient’s Faith or self-identification as a religious or spiritual person I = The Importance of the patient’s faith C = Is he/she part of a religious/spiritual Community? A = How the patient wants the health care provider to Address these spiritual issues in professional care © 1996, Christina M. Puchalski, MD See: www.GWISH.org

The HOPE Spiritual Assessment H: Sources of hope/meaning/comfort/strength/peace/love/connection We have been discussing your support systems --I was wondering, what is there in your life that gives you internal support? What sustains you and keeps you going? For some people, their religious or spiritual beliefs act as a source of comfort and strength in dealing with life's ups and downs; is this true for you? O: Organized religion Are you part of a religious or spiritual community? Does it help you? How? P: Personal spirituality/practices What aspects of your spirituality or spiritual practices do you find most helpful to you personally? (e.g., prayer, listening to music, communing with nature) E: Effects on medical care Has being sick (or your current situation) affected your ability to do the things that usually help you spiritually? Are you worried about any conflicts between your beliefs and your medical situation/care/decisions? [For the dying patient:] How do your beliefs affect the kind of medical care you would like me to provide over the next few days/weeks/months? --see: Anandarajah & Hight, "Spirituality and Medical Practice: Using the HOPE Questions as a Practical Tool for Spiritual Assessment," American Family Physician 63, no. 1 (Jan 1, 2001): 81-88

Example of Beliefs Affecting Treatment: Patients may not want pain medications because… • concern that the medication will cloud one’s awareness of spiritually important experiences • belief that pain serves a spiritual function • patient/family does not accept the principle of “double effect” regarding pain medication for palliative care at the end of life • perceived--and/or real--violation of dietary rules, esp. against pork or animal products in general

Example of Dietary Laws Affecting Medication Usage British study of Muslim patients observant of Islamic dietary laws: • Only 26% said they'd take medication if they were unsure whether it was halaal • 42% said they'd not take medication if they were unsure whether it washalaal • 58% said they'd stop taking medication if they found out it was haraam • Only 8% thought it was acceptable to take haraam medications for minor illnesses, but 36% thought it acceptable to take haraam medications for major illnesses. --Bashir, et al., "Concordance in Muslim patients…," International Journal of Pharmacy Practice 9, no. 3 Suppl (Sept 2001): R78

Referral Options for Spiritual Support ● Patients' own clergy ● Clergy connected to the patient's family or to their trusted friends ● Chaplains --as providers of “interfaith” spiritual care --as resources for non-theists --as resources for further referral ● Support Groups, even if not officially “spiritual,” may be sources for spiritual support Suggest the possible need for a “Plan B” for support.

WAYS THAT CLINICAL STAFF MAY SUPPORT PATIENTS SPIRITUALLY Chaplain John Ehman Penn Presbyterian Medical Center john.ehma