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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
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
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
God.
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
The Needs of the Caregiver
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
The Needs of the Caregiver
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
The Needs of the Caregiver
Females with private prayers/spiritual conversations
Successfully cope
Find meaning
Look beyond immediate burden
Finding meaning
may explain positive outcomes
can produce spiritual growth
Colgrove et al, Annals of Behavioral Medicine 2007 33:90-98
Carson, Sem Onc Nurs 1997 pp271-274@drbrowncares
The Needs of the Caregiver
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
The Needs of the Caregiver
“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
Kim et al, Support Care Cancer 2007 15:1367-1374
(p<0.001)
Stress-buffering hypothesis
of spirituality
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The Needs of the Caregiver
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
Carson, Sem Onc Nurs 1997 pp271-274
Kim et al, Support Care Cancer 2007 15:1367-1374
Colgrove et al, Annals Behav Med 2007 33:90-98
@drbrowncares
Colgrove et al, Annals of Behavioral Medicine 2007 33:90-98
Stress-buffering hypothesis
of spirituality
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The Needs of the Caregiver
Maintaining faith/finding meaning buffer[s]
adverse effect of caregiving stress on mental
health
Mortality rates higher for stressed caregivers
Colgrove et al, Annals of Behavioral Medicine 2007 33:90-98
@drbrowncares
The Needs of the Caregiver
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
Carson, Sem Onc Nurs 1997 pp271-274
@drbrowncares
Colgrove et al, Annals of Behavioral Medicine 2007 33:90-98
Stress-buffering hypothesis
of spirituality
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Stress-buffering hypothesis
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.
The Needs of the Caregiver
Female caregivers:
Use spiritual resources more than men
More likely to experience negative effects
Stress-buffering effects same for both sexes
Colgrove et al, Annals of Behavioral Medicine 2007 33:90-98
@drbrowncares
The Needs of the Caregiver
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
The
Caregiver
Power Tools:
Key
Concepts
PLiWA
Power Tools:
Key
Resources
Triple C
Power Tools:
SIDNEY AC
Key
Questions
@drbrowncares
[email protected], 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
one?
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
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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
Carson, Sem Onc Nurs 1997 pp271-274
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
one?
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
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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
Carson, Sem Onc Nurs 1997 pp271-274
@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
Carson, Sem Onc Nurs 1997 pp271-274
Harrington et al, 1996
@drbrowncares
Meeting
Caregiver’s
Spiritual Needs
Caring For
The
Caregiver
Power Tools:
Key
Concepts
PLiWA
Power Tools:
Key
Resources
Triple C
Power Tools:
SIDNEY AC
Key
Questions
Assessing/Addressing
Spiritual Needs
@drbrowncares
[email protected], 2015, SMJ 108(1):67
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
PLiWA
Presence, Listening deeply, Witness, Acts of Compassion
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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
Carson, Sem Onc Nurs 1997 pp271-274
Colgrove et al, Annals of Behavioral Medicine 2007 33:90-98
@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?’
Carson, Sem Onc Nurs 1997 pp271-274
@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
Carson, Sem Onc Nurs 1997 pp271-274
@drbrowncares
Meeting
Caregiver’s
Spiritual Needs
Caring For
The
Caregiver
Power Tools:
Key
Concepts
PLiWA
Power Tools:
Key
Resources
Triple C
Power Tools:
SIDNEY AC
Key
Questions
Assessing/Addressing
Spiritual Needs
@drbrowncares
[email protected], 2015, SMJ 108(1):67
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
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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
you?
@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
[email protected], 2015, SMJ 108(1):67
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
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
