caring ethically for spiritual & existential pain...
TRANSCRIPT
Caring Ethically for Spiritual &
Existential Pain:
Supporting Persons of All Faiths
and No Faith © 2015
Rev. Dr. Carla Cheatham
Carla Cheatham Consulting Group, LLC
http://carlacheatham.com
Overview
Case Studies
Importance and Challenges
Screening/HIS
Removing barriers to spiritual care
Interventions and Resources
“In” groups and “Out” groups
The “Sweet Spot” of ethical R/S/E care
Ethical boundaries
Finding our best selves
Case Study:
2 a.m.
On-Call
Case Study:
Social
Worker
Case Study:
“Cucuy” and Voodoo
Case Study:
Sedating spiritual pain?
Case Study:
Mary and Dr. A’s Beard
Standards and Best Practices
The Research…
Spiritual pain is common; significantly associated
w/ lower self-perceptions of spiritual quality of
life (Delgado-Guay, Hui, et al, 2011)
They want to talk about it, but don’t always get to! (Williams, 2011)
Standards and Best Practices
When we do…
Higher patient and family satisfaction (Astrow, et
al, 2007; Daaleman, et al, 2008; Wall, et al 2007)
Lower rates of hospital deaths (Flannelly, et al, 2012)
Higher rates of hospice enrollments/***less likely to pursue aggressive treatments (Balboni,
et al, 2010; Balboni, et al, 2011; Flannelly, et al, 2012)
Standards and Best Practices
When we don’t…
Depressed mood, decline in quality of
life/physical function, greater risk of mortality (Pargament, et al, 2001, 2004).
Standards and Best Practices
National Consensus Project for Quality Palliative Care
“Clinical Practice Guidelines for Quality Palliative Care,
Third Edition” (2013)
https://www.hpna.org/multimedia/NCP_Clinical_Practice_
Guidelines_3rd_Edition.pdf
Domain 5: Spiritual, Religious, and Existential Aspects of
Care
Cross-referenced across multiple domains
Importance of
Competent Spiritual Care Prevent harm
Honor dignity, provide respect, build hope (CR Snyder)
Build trust
Maintain open communication
Support adherence
Assist with difficult conversations
Heal old wounds
Decrease risk of complicated grief
Standards, regs, best practices
Improve satisfaction!!!
The Challenges
Current context
Multi-cultural
Religious, spiritual, mixture, disillusioned
External challenges
“Getting in the door” (PIC)
Tense racial and religious climate
Internal challenges
Too much to know; stereotypes
Lack of comfort, familiarity and understanding
Lack of cultural and religious/spiritual competence
The Challenges
Current context
Multi-cultural
Religious, spiritual, mixture, disillusioned
External challenges
“Getting in the door”
Tense racial and religious climate
Internal challenges
Too much to know; stereotypes (SLIDE)
Lack of comfort, familiarity and understanding
Lack of cultural and religious/spiritual competence
Religions/Ideologies We Encounter
Baha’i, Catholic, Protestant, Unitarian
Muslim
Jewish
Rastafarian
Buddhist, Hindu, Janin, Sikh
Confucian (Shinto, Tao)
Pagan (Celtic, Native American, Wicca)
New Age, Esoteric, Mystic
Non-theism (Atheist, Agnostic, Humanist)
The Challenges
Current context
Multi-cultural
Religious, spiritual, mixture, disillusioned
External challenges
“Getting in the door”
Tense racial and religious climate
Internal challenges
Too much to know; stereotypes
Lack of comfort, familiarity and understanding (PIC)
Lack of cultural and religious/spiritual competence
The meaning of illness and pain
can arise as a greater tyrant than
the physical symptoms.
We, collectively, can provide
spiritual palliation
that will positively impact
all involved
(and it’s easier than it may seem!)
Screening vs. Assessment
Puchalski & Ferrell (2010). Making Healthcare
Whole: Integrating Spirituality Into Patient Care
All disciplines equipped to screen and intervene
Trained spiritual counselor to assess and treat
Screening vs. Assessment
Ideal world of best practice:
SCC involved from the very first days of admission
SCC introduces spiritual care
IDT prepared to notice/respond/refer
SCC responsible for deeper clinical spiritual
assessment and on-going interventions
Reality:
Doesn’t always happen…
Screening
FICA (Puchalski & Romer, 2000)
Faith and Belief
Importance
Community
Address in Care or Action
Don’t assume
Clarify their meaning
Create open space
“I would argue that, regardless of culture, each
person’s dying and grieving experiences are unique
to that individual. Just as we should not assume
that all cultures understand dying, death, and grief
in the same way, neither should we assume that all
individuals experience ‘stages’ of dying and
grieving…There are no prescriptions or
recipes…Our challenge is to be open to learn from
the person who is dying/grieving. Each of them is
‘expert’ about their death/grief process.”
Ed Holland from Ethnic Variations in Dying, Death, and Grief
F- Is there any particular faith tradition in which
you were raised?
I- Which of your current beliefs/ideologies are
helping you most right now?
C- If there is a crisis at 2 a.m., whom do you want
me to call to come be with you and your family?
A- What do we need to know about how your
particular culture and beliefs/ideologies will
influence your decisions? How may we be most
respectful of your views?
Screening
Spiritual, religious, or both?
Eclectic
Rejected / disillusioned
Non-spiritual or non-theist (use existential language)
Review spiritual history
Current AND previous religion/belief systems
Family belief systems
Listen for landmines
HIS as Screening
“Was the patient and/or caregiver asked about
spiritual/existential concerns?”
No
Yes, and discussion occurred
Yes, but the patient and/or caregiver refused to
discuss
HIS as Screening
“Clinical record documentation showing only
the patient’s religious affiliation is not
sufficient evidence that the hospice had (or
attempted to have) a discussion regarding
spiritual/existential concerns with the patient
and/or caregiver.”
~CMS (2014) HIS Manual: Guidance Manual for
Completion of the Hospice Item Set(HIS)
HIS as Screening
Who is asking the question?
How/what are they asking?
How/when is information relayed to SCC?
Simple question:
“Are you having spiritual or existential
concerns?” (polar question/exclusive disjunction)
Accidentally soliciting “No” to spiritual care?
If so, then becomes the spiritual care assessment!
Let the SCC ask, if possible.
Removing Barriers to Spiritual Care
“Not the Avon lady—they’ve nothing to sell”
“If you come across a judgmental chaplain…”
“They want to know what your beliefs are and
help you find your own meaning, comfort, and
peace using those beliefs.”
“They aren’t here to replace your clergy…”
“They’re extra eyes and ears to care for mom.”
“May the SCC round/visit with me next time I
come?
Interventions
Reflect back onto them, do not provide answers:
“You have years of wisdom inside you…what do you
believe?”
“How is that belief helpful to you?”
“What rings true for you?”
“Does something else make more sense/feel more true?”
Interventions
Non-judgmental responses
Not imposing our values
Simple presence— “I hear you…”
To pray or not to pray?
Autonomy—their journey, not ours
Boundaries—nothing for our benefit at their expense
Resources
General Resources:
Interfaith dialogue
Regional/national offices of religions
Worship books and sacred texts
On-line Resources:
http://www.askmoses.com/
http://www.beliefnet.com
Resources
George Washington Institute for Spirituality & Health
GWish SOERCE (The Spirituality and Health
Online Education and Resource Center)
http://www.gwumc.edu/gwish/soerce
HealthCare Chaplaincy
www.healthcarechaplaincy.org
“A Dictionary of Patients’ Spiritual & Cultural
Values for Health Care Professionals” (2011)
Resources
NHPCO/NCHPP
Spiritual Caregiver Section Library (800-646-6460)
Literary Resources:
Doka & Tucci (eds.) (2011)—Living with Grief®:
Spirituality and End-Of-Life Care http://www.hospicefoundation.org/2011program
Gulley & Mulholland (2003)—If Grace is True: Why
God Will Save Every Person
Resources
Gulley & Mulholland (2004) —If God is Love:
Rediscovering Grace in an Ungracious World
Huston Smith (1986)—The World’s Religions
Judith C. Joseph (2004)—Responding with
Compassion http://www.jcjoseph.com/pages/companion.html
Resources
Matlins & Magida (2011)—How to Be a Perfect
Stranger: The Essential Religious Etiquette
Handbook, 5th Ed.
Thangaraj (1997)—Relating to People of Other
Religions
Comte-Sponville (2008)—The Little Book of
Atheist Spirituality
Practical Application
Cooper, RS, Ferguson, A, Bodurtha, JN, Smith, TJ
(2014). AMEN In Challenging Conversations:
Bridging the Gaps Between Faith, Hope, and
Medicine. Journal of Oncology Practice, May 6,
2014.
The best interventions and
most refined skills
will mean nothing if we are not
personally grounded well enough
to be able to implement them,
even, and especially,
when we feel uncomfortable.
“Out” groups and “In” groups
Attitude—“a psychological tendency that is expressed
by evaluating a particular entity with some degree of
favor or disfavor.” (Eagly & Chaiken, 1998)
Prejudice—"feeling, favorable or unfavorable, toward
a person or thing, prior to, or not based on, actual
experience” (**Gordon Alport,1979)
“Tweak areas”
“Tweak areas”: Ethnicity
Language
Gender
Gender identity
Religion/Spirituality/Belief system
Sexual orientation
Age
Class
Ability
Personality (ENTJ, ISFP)
Others…?
“Out” groups and “In” groups
Theory of Planned Behavior (Ajzen, 1985)
Powerful and predictive model of human behavior
Attitudes toward behavior
Subjective norms (expectations)
Perceived Behavioral Control
= greater Behavioral Intention (Ajzen, 2002)
How well do we believe we can “show up”
when “tweaked”?
“Out” groups and “In” groups
Pettigrew & Tropp (2008)
Meta-analysis of 515 studies
¼ million participants, 38 nations
Intergroup contact reduces prejudice
Mediated by:
enhancing knowledge (less predictive)
reducing anxiety (HUGE EFFECT)
increasing empathy and perspective taking (DITTO!)
“Out” groups and “In” groups
Improving Attitudes:
Cognitive (stereotypes)
Affective (comfort)
The number of close, personal, positive
relationships one has with a member of an
outgroup, the less likely one is to hold
negative attitudes (even if you disagree!)
"We think the world would be saved if only we could
generate larger quantities of goodwill and tolerance.
That's false. What will save the world is not goodwill
and tolerance but clear thinking. Of what use is it to be
tolerant of others if you are convinced that you are
right and everyone who disagrees with you is wrong?
That isn't tolerance but condescension. That leads not
to union of hearts but to division, b/c you are one up
and the others one down. A position that can only lead
to a sense of superiority on your part and resentment on
your neighbor's, thereby breeding further intolerance." -Anthony De Mello, The Way to Love
Spiritual Malpractice
Challenging to know what to say…
so we say nothing.
Challenging not to assert our own values,
beliefs, opinions and ideas…
so we say too much.
Neglect “Sweet Spot” Abuse
The Sweet Spot
“Professional boundaries are the spaces between
the provider’s power
and the client’s vulnerability. ..
The power of the (provider) comes from the
professional position and the access to private
knowledge about the client. Establishing boundaries
allows the (provider) to control this power differential
and allows a safe connection to meet the client’s needs.”
(NCSBN)
Ethical Boundaries
Professional responsibility of the vocation
CoPs, Common Standards (Council on
Collaboration, 2004)
Respect for patients’ and families’ autonomy
Impact of religion on health
Personal needs of our calling:
Do nothing to benefit ourselves, at their expense
Projection; Chaplain or Evangelist?
Do we know where our
(knowledge and comfort)
gaps are in caring for
persons of other
cultures, faiths, or beliefs?
Finding our best selves…
• Self-care ▫ Are we personally grounded? (pic)
• Self-awareness ▫ Are we aware of our tweak areas?
▫ Are we clear about our calling?
• Attitudes ▫ Are we making assumptions?
▫ Are we paying attention?
• Knowledge ▫ Are we doing our homework?
Finding our best selves…
• Self-care ▫ Are we personally grounded?
• Self-awareness ▫ Are we aware of our tweak areas? (pic)
▫ Are we clear about our calling?
• Attitudes ▫ Are we making assumptions?
▫ Are we paying attention?
• Knowledge ▫ Are we doing our homework?
Finding our best selves…
• Self-care ▫ Are we personally grounded?
• Self-awareness ▫ Are we aware of our tweak areas?
▫ Are we clear about our calling?
• Attitudes ▫ Are we making assumptions?
▫ Are we paying attention?
• Knowledge ▫ Are we doing our homework? (pic)
“Feeling vulnerable, imperfect,
and afraid is human.
It’s when we lose our capacity
to hold space for such struggles
that we become dangerous.” ~Brene Brown
Conclusion
Find a comfortable place for yourself…
to offer a comfortable and safe place for patients…
to let them be able to tell us what’s REALLY going on…
to just BE with their questions, struggles, pain…
and trust that THIS is MORE than ENOUGH!
Perhaps the most important thing we bring to
another person is the silence in us. Not the sort of
silence that is filled with unspoken criticism or
hard withdrawal. The sort of silence that is a place
of refuge, of rest, of acceptance of someone as they
are. We are all hungry for this other silence. It is
hard to find. In its presence we can remember
something beyond the moment, a strength on which
to build a life. Silence is a place of great power
and healing. Silence is God's lap.
Many things grow the silence in us, among
them simply growing older. We may then become
more a refuge than a rescuer, a witness to the process
of life and the wisdom of acceptance.
A highly skilled AIDS doctor once told me that
she keeps a picture of her grandmother in her home
and sits before it for a few minutes every day before
she leaves for work. Her grandmother was an
Italian-born woman who held her family close. Her
wisdom was of the earth.
Once when Louisa was very small, her kitten
was killed in an accident. It was her first experience
of death and she had been devastated. Her parents
had encouraged her not to be sad, telling her that the
kitten was in heaven now with God.
Despite these assurances, she had not been
comforted. She had prayed to God, asking Him to
give her kitten back. But God did not respond.
In her anguish she had turned to her
grandmother and asked, "Why?" Her grandmother
had not told her that her kitten was
in heaven as so many of the other adults had.
Instead, she had simply held her and reminded
her of the time when her grandfather had died. She,
too, had prayed to God, but God had not brought
Grandpa back. She did not know why. Louisa had
turned into the soft warmth of her grandmother's
shoulder then and sobbed. When finally she was
able to look up, she saw that her grandmother was
crying, too.
Although her grandmother could not answer
her question, a great loneliness had gone and she felt
able to go on.
All the assurances that Peaches was in heaven
had not given her this strength or peace.
"My grandmother was a lap, Rachel," she told
me, "a place of refuge. I know a great deal about
AIDS, but what I really want to be for my patients is
a lap. A place from which they can face what they
have to face and not be alone."
Taking refuge does not mean hiding from
life. It means finding a place of strength, the
capacity to live the life we have been given with
greater courage and sometimes even with gratitude.
(A Place of Refuge by Dr. Rachel Naomi Remen)
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DOI:10.1007/s11606-011-1781-y