Spiritual Distress & Dying Well
David Falk2016
SpiritualityMeaning & Purpose of life
Transcendence or “Otherness”
Community/Communion/Connectedness
Values and Beliefs
Cassell, Eric; Nature of Suffering
SpiritualityCompleteness/Wholeness within the inner person
Unity with self/others/nature/God within the inner person
Interface with the exterior is through the conscience
Expression of the inner spirit is through community, values, beliefs (religion)
Spirituality
Focus of this Presentation
Spirituality, or the inner journey of a person
Giving some conscious thought/concepts to inner longings/yearnings which we all have
NOT religious beliefs
NOT the definition of truth
NOT comparative study of different beliefs
What is Spiritual Care?Assessment
Engaging as person to personAttending to the person’s storyExploring the person’s spiritual resources
What is Spiritual Care?Therapeutic interventions
Assisting the person to access personal sources of meaning and strengthAddressing end of life ideas/concernsOffering spiritual/religious supportConnecting with spiritual resourcesEncouraging the spirituality of the interdisciplinary support teamProviding grief support for the person and their loved ones
Spiritual DistressHow do you know that spiritual distress is present?
Through conversation person to personThrough mutual interface of your spirit with the spirit of the person you are interacting withThis requires self-awareness of your own spirit
Classic methods of becoming self-aware are:Meditation/reflective prayerMeditation on sacred writingsGuidance from the spiritual counsel of trusted others
Through repeated failure of physical/emotional/social interventions
Spiritual DistressDifferent Models of Spiritual Development found in the literature:
Viktor Frankl – Logotherapy – Man’s Search for MeaningGordon Allport - Intrinsic and Extrinsic ReligionJanet Hagberg/Robert Guelich - Stages of Spiritual Development – The Critical JourneyJ. Budziszewski - Reactions of the Conscience -Revenge of Conscience/Natural Law
Intrinsic/Extrinsic Religion
Gordon Allport (psychologist) developed this 4x4 table in the 1960s when spirituality and religion were considered to mean the same thing
Research literature through the subsequent years has used this model to determine spirituality/religion factors and health outcomes
Not surprisingly, ++ square and -- square showed better health outcomes (no disonance in person)
Intrinsic/Extrinsic Religion
Intrinsic/Extrinsic
Positive Negative
Positive + + + -Negative - + - -
-+
Stages of Spiritual Development
The authors developed a descriptive, staged approach to the different levels of spiritual life in a person. It is presented in six progressive stages but in reality these stages are not linear with different stages presenting with different situations in life.
It was developed through professional experiences, validated through presentations in various settings.
It came from a Christian perspective but shown to be valid for other wisdom traditions as well
Stages of Spiritual Development
Stage I – Awareness there is something other than this physical universe (spiritual awareness)
Stage II – Learning all about this “otherness”(follower)
Stage III – Proclaiming/serving these beliefs (cause)
The Wall –”things just aren’t working anymore… there’s got to be more” --barriers/burnout/rejection/emptiness
Stages of Spiritual Development
The Wall – starts to crumble
Stage IV – surrender/integration of this “otherness” within me - a journey inward
Stage V – serving this loving wholeness with one’s life – “learning to live out of a totally different place”
Stage VI – letting this “otherness” pervade you with love so you can love and let others be loved – “It’s all about God”
Natural Law & the Conscience
Budziszewski is a professor of philosophy & law/politics who has studied the ancient basis of law called natural law which comes from all ancient faiths/wisdom traditions. He has written extensively on it’s application within present day political realities.
Natural Law is “the law of the heart” That which we know is good and that which we know is wrongThat which we have difficulty knowing intellectually but we know in our inner beingUniversally that which human beings ‘cannot not know’
ConscienceThat venue through which our spiritual awareness comesThat which gives us visceral distress when denied (guilty)
Conscience & it’s distress
Healing the conscience -repent
Confess to the reality of this distressAtone for what caused the distressReconcile to others/GodJustification is completed by you changing to accept the ‘heart’ law
Suppression of the conscience – displace
Advocate to appeaseDeny/suppress the discordRecruit others in the displacementRationalization is used to intellectually suppress conscience
Spiritual Distress in End-of-life situations
Modifications to these above models have been developed for hospital and end-of-life spiritual care
John Ehman, “Spiritual Distress in Patients: A Guideline for Health Care Providers”Consensus for “Pain Community Centre” website –Spiritual Pain: Promoting Spiritual Health and Managing Spiritual DistressHOPE toolSMILE consortium in GermanyFICA tool
Spiritual Pain from Pain Community Centre
Type 1 person – personal spirituality seen as unconnected with religious observance
Type 2 person – personal spirituality seen as connected to religious observance but spirituality uses religion as only one means of expression
Type 3 person – personal spirituality rarely expressed other than through religious practices
HOPE toolH: Source of hope, meaning, comfort, strength, peace, love and connection
O: Organized religion
P: Personal spirituality and practices
E: Effects on medical care and end-of-life issues
FICA spiritual assessment tool
F: Faith or Beliefs
I: Importance and Influence
C: Community
A: Address
Framework for assessing Spiritual Distress
The above slides presented a very brief summary of some of the tools and models that can be used in spiritual assessment & care but they are not health care or EOL specific.
The following framework is based on Eric Cassell’sfour areas of suffering:
Meaning & PurposeTranscendenceCommunityBeliefs/Values
SpiritualityMeaning & Purpose of life
Transcendence or “Otherness”
Community/Communion/Connectedness
Values and Beliefs
Cassell, Eric; Nature of Suffering
Meaning & PurposeLogotherapy – Viktor Frankl
SMILE – Schedule for Meaning In Life Evaluation – Dr. Martin Fegg (2008) JPSM 35(4):356-364
Spiritual Assessment & Interventions –Meaning & Purpose
In conversation person to person, or after asking the question, “What gives you meaning and purpose?”, define:
What or who provides meaningIs it themselves only?Is it others? Is it some thingIs it transcendence/God?
Spiritual Assessment & Interventions –Meaning & Purpose
Once meaninglessness/purposelessness is present, then what?
Search for a daily goal or short term goal the person can strive forDeal with past regrets/guiltProvide adequate, helpful information to alleviate anticipatory sufferingEmploy Dignity Therapy interventions – Dr. H. ChochinovDevelop a team plan to address estranged relationshipsDevelop a team plan to address spiritual neglect
Transcendence/Otherness
Something beyond/God/Universe
Present in all of us
Mystery/awe as shown in nature/cathedrals/art/scientific discovery
Great Wisdom Traditions of the world have attempted to define this essense throughout the ages
Spiritual Assessment & Interventions – Transcendence/Otherness
In conversation person to person, or after asking the question, “Do you believe in something beyond this world?”, define
Often people’s default answer is, “I am not sure.If it is God, how do they view God If it is Universe, how do they view this incarnation If it is ‘nothing”, is this belief internalized or externalized
Spiritual Assessment & Interventions – Transcendence/Otherness
Once uncertainty is detected over this aspect of spiritual life, then what?
Take this exploration very sensitively, constantly questioning and sensing when the person does not want to address it further. Once this point has been reached, leave it and re-address it some days later if the person so desiresIf it is only an external belief, you can be a constant, re-assurantguide as the journey from head to heart is tortuous, convoluted, unpredictable, and distressing. Journey with companionship and compassion.If there is uncertainty, often your defining it using the person’s language/imagery provides insightful re-assurance
Community/Communion/Connectedness
Community comes from the Latin “communis” meaning “things held in common”.
Communion comes from the same root word as community but has come to mean more of an internal bond as opposed to external bonding
“In mathematics, connectedness is used to refer to various properties meaning, in some sense, “all one piece”
Spiritual Assessment & Interventions –Community/Communion/Connectedness
Taking a genogram & talking about relationships helps you to identify community and the significance of it in the person’s life
The need for restoration of relationships is common in all of us –with the transcendence as well as with those in our world
Ira Byock, Palliative Care physician, uses the following five assessment & intervention:
Please forgive me – ask the patient to list, then write or talk with those listedI forgive you – ask the patient to list, then write or talk with those listedThank you – as aboveI love you – as aboveGood-bye
Values & BeliefsThe definition of the words, values & beliefs, has become very vague
Beliefs = core values, not easily changed, have come from wisdom traditions/family traditions/culture.
Values = prioritized beliefs which shape attitudes which shape behaviour choices
Beliefs & Values Are acquired innately, from culture, family, religion Can be changed with life experiences/revelationCan be discongruent
Spiritual Assessment & Interventions –Values & Beliefs
Ethics frameworksThe square shared by David KuhlmanBioethics journal - Edmonton
Ethical GridMedical Indications Patient PreferencesWhat are the facts of the medical history/condition?Medical condition diagnosis and prognosis?Treatment
past & presentrisks/benefits
Pain & symptomsPast experience with the health care systemFunctional levelSufferingCurative or reversible component of illness
Is the patient competent? Does he/she comprehend the situation?What are your goals regarding treatment?What are your goals for the rest of your life?How can we as a team help you achieve your goals?What is your understanding of palliative care?How do you make decisions?Do you have a health proxy, a Living Will?Who is best able to act as your advocate?Is consent voluntary? Is there any coercion?Who has the authority to decide on behalf of this patient? What are the ethical & legal limits of that authority?
Quality of Life Contextual featuresWhat does quality of life mean to you?How might this be interpreted in the context of having a terminal illness?How do persons other than the patient perceive the patient’s quality of life & of what ethical relevance are their perceptions?What brings meaning to your life?Consider physical, social, psychological, & spiritual issues.Are there circumstances under which you would consider stopping all medication or treatment?What sustains you at present?What is achievable with regard to the patient’s preferences?
Terminal illnessHome, hospice, hospitalWhose other interests are affected?Available resources
Economic/fiscalPhysicalEmotionalSocietal (fairness & equality in distribution)
What does the law say?Are we comfortable with this treatment plan?
Spiritual Assessment & Interventions –Values & Beliefs
In conversation person to person, one can establish present values of the patient, but truly understanding their beliefs is more
Spiritual Assessment & Interventions –Values & Beliefs
If dissonance is observed as expressed by anxiety, uncertainty, or uncontrolled physical symptoms, ask “Are you at peace with yourself, others, God?”
Guilt expressions are common in this area
Resolution comes through forgiveness
Can use some of Ira Byock’s five phrases here:Please forgive meI forgive you
ReferencesMan’s Search for Meaning; Frankl, Viktor, 1946
The Nature of Suffering & the Goals of Medicine; Cassell, Eric J., 2004
The Nature of Healing: The Modern Practice of Medicine; Cassell, Eric J., 2013
The Faith Factor: Proof of the Healing Power of Prayer; Matthews, Dale; Clark, Connie, 1998
The Revenge of Conscience; Budziszewski, J., 1999
The Critical Journey: Stage in the Life of Faith; Hagberg, Janet; Guelich, Robert, 1995/2005
The Best Care Possible: A Physician’s Quest to Transform Care; Byock, Ira, 2012
Dying Well; Byock, Ira, 1997
The Language of God: A Scientist Present Evidence for Belief; Collins, Francis, 2006
Palliative Care Service Calgary Zone resident presentation – Self-Awareness
Spiritual Distress & Dying Well
Questions….