Faith & medicine at the bedside - caring for the caregiver

Faith & Medicine At The

Bedside: Caring For The Caregiver

SHERRY-ANN BROWN, MD, PHD

NARDIA MCFARLANE, MD

MARK NYMAN, MD

Painting from www3.stcamilluscenter.org

@drbrowncares

drbrowncares@gmail.com

Please see ‘Women in Medicine & Dentistry’ @

www.cmda.org for an MP3 of the talk available for

purchase online.

Outline

Jesus, Healer

Faith in America

Need for a Spiritual component

The Needs of the Caregiver

Power Tools for your Toolbox

Patient Stories

@drbrowncares

Mathew 9:35

Jesus went through all the towns and villages, teaching in their

synagogues, proclaiming the good news of the kingdom and

healing every disease and sickness.

@drbrowncares

Jesus, Healer

St Francis Xavier Major Seminary, http://sfxms.blogspot.com

@drbrowncares

Jesus, MD

Archdiocese of Washington, http://blog.adw.org/2010/02/the-diagnosis-is-dire-but-the-doctor-is-in/

@drbrowncares

Jesus, Bedside

http://www.ely.anglican.org

@drbrowncares

Jesus, Power

http://draltang02.blogspot.com/

@drbrowncares

Faith in America

According to an online poll of 2,455 U.S. adults by

Harris Interactive in November 2007:

__% of adult Americans believe in God.

__% of the public believe in miracles.

__% believe in the existence of

heaven.

@drbrowncares

Faith in America

According to an online poll of 2,455 U.S. adults by

Harris Interactive in November 2007:

82% of adult Americans believe in

79% of the public believe in miracles.

75% believe in the existence of

heaven.

@drbrowncares

http://www.gallup.com

Organized Religious Preferences in the

United States, 2012 (Gallup poll)

@drbrowncares

The Need for a Spiritual

Component In a study at the Dana-Faber Cancer Institute:

__% patients/nurses/physicians felt providing spiritual care was

important AND appropriate

__% patients frequency of spiritual care provided

__% patients positive impact of spiritual care

Spiritual care training for physicians, OR:

_x more likely to provide spiritual care

_% had received prior training

Balboni et al, J Clin Oncol 2013 1;31(4):461-7

@drbrowncares

The Need for a Spiritual

Component In a study at the Dana-Faber Cancer Institute:

80% patients/nurses/physicians felt providing spiritual care was

important AND appropriate

15% patients frequency of spiritual care provided

100% patients positive impact of spiritual care

Spiritual care training for physicians, OR:

7x more likely to provide spiritual care

14% had received prior training

Balboni et al, J Clin Oncol 2013 1;31(4):461-7

@drbrowncares

Patient Story: I Cannot Die Tonight

@drbrowncares

1.4 million cancer diagnoses in 2006 in USA

Similar number of family/primary caregivers

Caregiver vital for trajectory of disease

Spouses typically primary caregivers

¾ caregivers in USA are women

Female - independent risk for poor well-being

Colgrove et al, Annals of Behavioral Medicine 2007 33:90-98

Ferrell et al, Seminars in Oncology Nursing 2012 28(4):256-261

@drbrowncares

Caregiver’s life radically altered by diagnosis

Profound spiritual needs

Wrestle with faith

Witness pain and suffering

Struggle to maintain hope

Spiritual needs key for whole-person support

Ferrell et al, Seminars in Oncology Nursing 2012 28(4):256-261

@drbrowncares

Females with private prayers/spiritual conversations

Successfully cope

Find meaning

Look beyond immediate burden

Finding meaning

may explain positive outcomes

can produce spiritual growth

Carson, Sem Onc Nurs 1997 pp271-274@drbrowncares

More religious family members

feel more positively about role as caregivers

get along better with those they care for

Providing care for the caregiver

Equips caregiver to address patient’s needs

Weaver et al, Southern Medical Journal 2004 97(12):1210-1214

Carson, Sem Onc Nurs 1997 pp271-274

@drbrowncares

“To cure sometimes, relieve often, comfort

always”

Spiritual strength: strength which gives the ability

to face difficulties & overcome adversities

Meaning of life: a sense of purpose to life or that

life is part of a greater plan or mission

O’Connor and Skevington, Br J Health Psychology 2005 10 (pt 3):379-398

Wessel,Conn Med 1980 44(2):111-2

@drbrowncares

Stress-buffering hypothesis

of spirituality

Kim et al, Support Care Cancer 2007 15:1367-1374

@drbrowncares

(p<0.001)

of spirituality

Psychological distress from increased caregiver stress can

be attenuated by maintaining faith and spirituality

Caregivers who are low in spirituality need help to derive

faith and meaning in the context of cancer care

Colgrove et al, Annals Behav Med 2007 33:90-98

@drbrowncares

of spirituality

Maintaining faith/finding meaning buffer[s]

adverse effect of caregiving stress on mental

health

Mortality rates higher for stressed caregivers

@drbrowncares

Caregivers who felt that the caregiving role was

meaningful, perceived themselves to be healthier than

those caregivers who saw little or no purpose in the

caregiving role

Spirituality helps caregivers find meaning in their role,

leading to improved health

@drbrowncares

of spirituality

of spiritualityCommentary:

The previous slide indicates that we need to interpret these studies with caution. The figure is from a cross-sectional, retrospective study with self-reported data. As with any cross-sectional data, there is no overt determination of causality or directionality. This means that the data could be interpreted in at least two ways:

• It has been suggested that caregivers who are more spiritual may embrace love, faithfulness generosity, and selflessness. They may view caregiving as a spiritual duty leading to positive appraisal and fulfilling their spiritual calling, while neglecting self-care.

• Conversely, the data could suggest that caregivers who in general experience a greater decline in physical health pursue more spiritual coping mechanisms, regardless of their baseline spirituality.

Female caregivers:

Use spiritual resources more than men

More likely to experience negative effects

Stress-buffering effects same for both sexes

@drbrowncares

Medicine needs to further integrate these scientific findings

into clinical practice to promote better patient care

Weaver et al, Southern Medical Journal 2004 97(12):1210-1214

@drbrowncares

Assessing/Addressing

Spiritual Needs

Meeting

Caregiver’s

Spiritual Needs

Caring For

Caregiver

Power Tools:

Concepts

Power Tools:

Resources

Triple C

Power Tools:

SIDNEY AC

Questions

@drbrowncares

drbrowncares@gmail.comBrown, 2015, SMJ 108(1):67

Power Tools – Key Questions

SIDNEY AC

1. Has faith or spirituality been of support as you face your loved one’s

illness?

2. Is spirituality important to you, as you provide support for your loved

3. Is your spirituality similar or different from your loved one’s spirituality?

4. Have you encountered spiritual needs that you have as a family

caregiver?

5. What has this caregiving experience been like for you?

6. Have you been able to find meaning in your caregiving experience?

7. Do you have a faith community, minister, or clergy available to you?

8. Has your spirituality changed since your loved one became ill?

SIDNEY AC:

Support, Important, Different, Needs, Experience, You, Available,

Changed@drbrowncares

Brown, 2015, SMJ 108(1):67

Mary’s story (parts 1, 2, 3)

The Needs of the

Caregiver: SIDNEY AC

What feelings/ processes did Mary experience?

shock, denial, sadness, anger, acceptance

bargaining with God

intense pain with grieving

need to know loving/sustaining God

Patient and caregiver may be out of synchrony

@drbrowncares

Power Tools – Key Questions

SIDNEY AC

1. Has faith or spirituality been of support as you face your loved one’s

illness?

2. Is spirituality important to you, as you provide support for your loved

3. Is your spirituality similar or different from your loved one’s spirituality?

4. Have you encountered spiritual needs that you have as a family

caregiver?

5. What has this caregiving experience been like for you?

6. Have you been able to find meaning in your caregiving experience?

7. Do you have a faith community, minister, or clergy available to you?

8. Has your spirituality changed since your loved one became ill?

SIDNEY AC:

Support, Important, Different, Needs, Experience, You, Available,

Changed@drbrowncares

Brown, 2015, SMJ 108(1):67

The Needs of the

Caregiver: SIDNEY AC

Mary…

Believes in a personal, loving God

Clearly aware of spirituality in her life

Relies on spirituality to cope with caregiving

@drbrowncares

The Needs of the

Caregiver: SIDNEY AC Caregivers of clinic patients TOP 10

Hope for the future

Strong faith in God

Caregivers of hospice patients TOP 10

Prayers from others

Strong faith in God

Harrington et al, 1996

@drbrowncares

Meeting

Caregiver’s

Spiritual Needs

Caring For

Caregiver

Power Tools:

Concepts

Power Tools:

Resources

Triple C

Power Tools:

SIDNEY AC

Questions

Spiritual Needs

@drbrowncares

Power Tools – Key Concepts

PLiWAPresence

• Being fully in the room with the caregiver – mind, body, and spirit

Listening deeply

• Hearing intention behind caregivers’ words

• Uncovering underlying needs

Bearing witness

• Accompanying caregiver on journey

• Sitting with caregiver in the midst of suffering

Acts of compassion

• Tangible responses that aid caregiver in feeling spiritually

supported

Presence, Listening deeply, Witness, Acts of Compassion

The Needs of the

Caregiver

Caregivers…who had questioned their faith or felt distant

from or angry with God, reported higher levels of

depression as caregiving burden increased

@drbrowncares

The Needs of the Caregiver:

SIDNEY AC, PLiWA

Patient story: Brokenness

@drbrowncares

The Needs of the

Caregiver

Spiritual needs

To feel connected to others

To be listened to

To be able to question and ask ‘why?’

@drbrowncares

The Needs of the

Caregiver Caregivers sometimes need encouragement to:

Express needs

Accept help

Stay connected with others

Continue to engage in spiritual activities

@drbrowncares

Meeting

Caregiver’s

Spiritual Needs

Caring For

Caregiver

Power Tools:

Concepts

Power Tools:

Resources

Triple C

Power Tools:

SIDNEY AC

Questions

Spiritual Needs

@drbrowncares

The Needs of the

Caregiver: Triple C

• Patient stories: One Day At A Time

Stepping Aside, Letting Go

@drbrowncares

The Needs of the

Caregiver: Triple C

• Teamwork among:

• Health professionals (caring nurses),

• chaplains, and

• community clergy.

@drbrowncares

Brown, 2015, SMJ 108(1):67

The Needs of the

Caregiver:

SIDNEY AC, PLiWA

Patient story: Because He Lives

@drbrowncares

Developing Your Toolbox

1. What are your sources of hope, strength

and comfort?

2. What helps to get you through the

difficult times in your life?

3. Would you like someone to pray with

@drbrowncares

High Yield Points

Interest in caregiver as a whole person

Caring respectable manner

Assess and meet caregivers’ spiritual needs

Develop toolbox

Ease patient suffering

@drbrowncares

Quotes to consider

“I think, therefore I am.” ~ Rene Descartes, French philosopher, writer, and mathematician

“I AM; therefore I think…”

• inspiration to exhort patients

• wisdom to encourage caregivers

@drbrowncares

Quotes to consider

“God will be in that hospital room with you…

There will be times when you can heal, though you cannot cure.”

Kushner, Medicine and Caring: Thoughts on Compassionate Care

and a Religious Worldview, Medical Grand Rounds, Mayo Clinic 2012

@drbrowncares

References Balboni et al. Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and

physicians and the role of training. J Clin Oncol. 2013 1;31(4):461-7.

Borrell-Carrio et al. The Biopsychosocial Model 25 years later: Principles Practice and Scientific Inquiry. Ann Fam Med. 2004; 2:576-582.

Carson. Spiritual care: the needs of the caregiver. Semin Oncol Nurs. 1997;13(4):271-4.

Colgrove et al. The effect of spirituality and gender on the quality of life of spousal caregivers of cancer survivors. Ann Behav Med. 2007;33(1):90-8.

El Nawawi et al. Palliative care and spiritual care: the crucial role of spiritual care in the care of patients with advanced illness. Curr Opin Support Palliat Care. 2012 Jun;6(2):269-74.

Ferrell et al. Deriving meaning and faith in caregiving. Semin Oncol Nurs. 2012;28(4):256-61.

Kim et al. Psychological distress of female cancer caregivers: effects of type of cancer and caregivers' spirituality. Support Care Cancer. 2007;15(12):1367-74.

MacLean et al. Patient Preference for Physician Discussion and Practice of Spirituality. J Gen Inter Med. 2003; 18:38-43.

Phelps et al. Addressing spirituality within the care of patients at the end of life: perspectives of patients with advanced cancer, oncologists, and oncology nurses. J Clin Oncol. 2012 30(20):2538-44.

Post et al. Physician and Patient Spirituality: Professional Boundaries Competency and Ethics. Ann Intern Med. 2000;132: 578-583.

Rumbold. A Review of Spiritual Assessment in health care practice. MJA. 2007;186:S60-62.

Steinhauser et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000 284(19):2476-82.

Weaver et al. The role of religion/spirituality for cancer patients and their caregivers. South Med J. 2004;97(12):1210-4.

Wessel. To cure sometimes, to relieve often, to comfort always. Conn Med. 1980 44(2):111-2.

@drbrowncares

Questions?

@drbrowncares

Faith & Medicine At The

Bedside: Caring For The Caregiver

SHERRY-ANN BROWN, MD, PHD

NARDIA MCFARLANE, MD

MARK NYMAN, MD

Painting from www3.stcamilluscenter.org

@drbrowncares

Faith & medicine at the bedside - caring for the caregiver

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