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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?

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slide1

WAYS THAT CLINICAL STAFF MAY SUPPORT PATIENTS SPIRITUALLY

Chaplain John Ehman

Penn Presbyterian Medical Center

john.ehman@uphs.upenn.edu

5/5/10

slide2

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

slide3

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

slide4

Terminology:

Spirituality or Religion

The language is sometimes ambiguous and confusing.

slide6

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

slide7

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

slide8

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?

slide9

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)

slide10

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?

slide11

→ Spirituality →

Illness & Treatment

slide13

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)

slide14

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)

slide15

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)

slide16

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)

slide17

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)

slide18

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)

slide19

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)

slide20

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)

slide21

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)

slide22

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”)

slide23

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”)

slide24

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

slide25

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

slide26

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?

slide27

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.

slide28

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

slide29

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

slide31

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

slide32

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

slide33

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

slide34

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

slide35

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.

slide36

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

slide37

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.

slide38

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")

slide39

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

slide40

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)

slide41

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

slide42

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.

slide43

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

slide44

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?”

slide45

“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

slide46

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

slide47

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

slide48

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

slide49

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

slide50

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.

slide51

Provider Prayer with Patients

Shared prayer can be a helpful support to patients, under the right circumstances, but it must be done very carefully. Caution is necessary to protect against the imposition of the provider's values or a blurring of the provider's role. Consulting a chaplain about a particular case may be helpful.

What if a patient asks for prayer, and you’re uncomfortable?

● "This is very important to you, and what's important to you

is important to me; but I'd prefer that you offer the prayer

and I'll be with you in silence."

● "Thank you for offering to have me join you in prayer, but

it's just not my practice in the office."

● "I will think of you in my own private prayers/meditation."

● "I'm not sure about praying together, but I am sure that we

can work together, and I honor your spiritual life."

slide52

Suggestions, if you do want to use

corporate prayer with a patient:

● Keep it simple

● Act to "mark off" or distinguish the prayer time

(e.g., a few seconds of silence; take a breath)

● Avoid putting doctrinal statements into the patient’s

mouth (esp. in light of patient-provider power inequity)

● Focus on the immediate situation (as has been

indicated by the patient)

● Consider making personal well-wishing statements

Example: "I pray for Bob, who is in the midst of so much and who is today feeling anxious about the tests we've planned. I pray that he feel an affirmation and a peace in all that he is doing. I pray for blessings upon him. Amen."

slide53

“Religious Diversity:

Practical Points for Health Care Providers”

Available on the HUP Pastoral Care website:

www.uphs.upenn.edu/pastoral

(--see the Research & Staff Education section)