spiritual distress & dying well · spiritual distress how do you know that spiritual distress...

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


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


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”


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

Presenter

Presentation Notes

Viktor Frankl was a neurologist and psychiatrist in Vienna, Austria as well as a Holocaust survivor. Based on his observations in the concentration camp, he developed the “Institute of Logotherapy and Existential Analysis” “When we are no longer able to change a situation, we are challenged to change ourselves.” “Those who have a “why” to live, can bear with almost any “how”.” “But there was no need to be ashamed of tears, for tears bore witness that a man had the greatest of courage, the courage to suffer.” SMILE – Schedule for Meaning In Life Evaluation – Dr. Martin Fegg (2008) JPSM 35(4):356-364 Validated questionnaire assessing 15 themes in life Developed in Germany & is presently used in at least 8 languages Level of satisfaction with life does not change much in palliative care patients but weighting of 3 domains becomes pre-eminent Role of partner Nature/animals Spirituality www.meaninginlife.info

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?

Presenter

Presentation Notes

Is it themselves only? – if so, they could suffer meaninglessness through physical decline Is it others? – If so, how strong is this bond as it could fail Is it some thing? – If so, once they can no longer engage with this item, life could become meaningless Is it transcendence/God? – if so, is there dissonance because of conceptual issues/neglect/guilt/lack of connnectedness

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

Presenter

Presentation Notes

The evidence for this aspect comes from many aspects of humanity -poetry/songs/stories/history/science “There exists a God-shaped vacuum in the heart of every man.” Pascal (mathematician, philosopher) “Two things fill me with constantly increasing admiration and awe the longer and more earnestly I reflect on them: the starry heavens without and the Moral Law within.” Kant (philosopher) “At the moment it seems as though science will never be able to raise the curtain on the mystery of creation….as he pulls himself over the final rock, he is greeted by a band of theologians who have been sitting there for centuries.” Jastrow (astrophysicist)

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

Presenter

Presentation Notes

Often people’s default answer is, “I am not sure.” & so just asking the question helps them in their search of what is going on within their inner being. Going back later when trust has been established can provide more accurate answers. If it is God, how do they view God – external belief or internal belief If it is Universe, how do they view this incarnation – peacefully or fearfully 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 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”

Presenter

Presentation Notes

Community comes from the Latin “communis” meaning “things held in common”. Human communities may share intent, belief, resources, preferences, needs, and risks in common, affecting the identity of the participants and their degree of cohesiveness. Communion comes from the same root word as community but has come to mean more of an internal bond as opposed to external bonding. It is experienced as an inner understanding between people in particular groups experiencing common life, or between a person and his fellowship with the Supreme (especially used by Christians as in the body & blood of Christ) “In mathematics, connectedness is used to refer to various properties meaning, in some sense, “all one piece”. When a mathematical object has such a property, we say it is connected; otherwise it is disconnected.” The evidence for this aspect comes from many aspects of humanity -poetry/songs/stories/history/science “It is an absolute human certainty that no one can know his own beauty or perceive a sense of his own worth until it has been reflected back to him in the mirror of another loving, caring human being.” John Joseph Powell “No man is an island, entire of itself.” John Donne “The deepest level of communication is not communication, but communion. It is wordless..beyond speech…beyond concept.” Thomas Merton

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

Presenter

Presentation Notes

The definition of the words, values & beliefs, has become very vague. It seems to depend upon the context in which the word is used. Beliefs = core values, not easily changed, have come from wisdom traditions/family traditions/culture. They deal with right & wrong Values = prioritized beliefs which shape attitudes which shape behaviour choices. They are the framework of ethics. This is a relatively recent concept. Beliefs & Values Are acquired innately, from culture, family, religion Can be changed with life experiences/revelation Can 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?


In conversation person to person, one can establish present values of the patient, but truly understanding their beliefs is more

Presenter

Presentation Notes

In conversation person to person, one can establish present values of the patient, but truly understanding their beliefs is more difficult because of how we all have learned to suppress our conscience throughout life. Therefore do not be surprised when a patient’s decision does not seem to follow logically from what they shared about their values. Context, relationships, society pressures, fears all change their expressed desire because the prioritization of values & beliefs comes with context.


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

Presenter

Presentation Notes

If dissonance is observed as expressed by anxiety, uncertainty, or uncontrolled physical symptoms, ask “Are you at peace with yourself, others, God?” J. Budziszewski outlines behaviours manifest by a suppressed conscience which can help you determine if spiritual distress is present Guilt expressions are common in this area Resolution comes through forgiveness Can use some of Ira Byock’s five phrases here: Please forgive me I 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….

spiritual distress & dying well · spiritual distress how do you know that spiritual distress...

Documents