Nota Slide 2 - Dr Fahmi

Spiritual Distress

Dr Ahmad Fahmi B Md Sahray

Interprofessional Spiritual Care Education Curriculum (ISPEC)
George Washington Institute of Spirituality and Health

Objectives

1. To define spiritual distress
2. Define different stages of spiritual development and the types of clinical considerations that might

impact patients in each of these stages.
3. Distinguish the difference between spiritual distress and other types of distress

Introduction

• Illness and Suffering

• Illness, because it raises questions regarding meaning and value, has been described as a spiritual journey. Questions
arise such as: ‘Why am I here?’ ‘What has been the purpose of my life?’ The search for answers can result in deep
distress.

• The implications are serious: to ignore the spiritual aspect of illness, especially with our large aging society
facing chronic illnesses, is to ignore a significant dimension of the experience. (Aparna Sajja, GW Medical
Student)

• Suffering in Patients Faced with Serious and Chronic Illness

• Meaning: “I am not the person I use to be.” “Nothing gives me meaning.”
• Hope: “What do I have to hope for?”
• Mystery: “Why me? Why now?” “What will it be like when I die?”
• Isolation: “My husband died, my entire family is gone,” “God is not there for me,” “ I am so alone”
• Helpless: “I have no control of my life anymore” “I don’t remember

Spiritual Distress

• Occurs when patients experience and cannot resolve :
• Loss of dignity
• Meaninglessness
• Hopelessness or despair
• Feeling loss of control
• Conflict between deeply held beliefs and values and life events such as illness or loss



Spiritual Distress

• Expression of spritual distress, Diana Katiman, Handbook
of Palliative Medicine in Malaysia) :

• Fear about future,dying and what happens after dying
• Loss of identity or roles
• Helplessness and loss of control of what is happening
• Anxiety about relationship, body image or sexuality
• Suffering excessively from physical symptoms
• Anger towards God/ self/family/ friends/ Doctors
• Guilt or shame
• Hopelessness, despair, feeling alone or unloved
• Exploration of meaningb and purpose of their life

Definition

• The NCCN guideline defines distress as :
• “A multifactorial unpleasant emotional experience of a psychological (cognitive, behavioral,

emotional) social, and/or spiritual nature that may interfere with the ability to cope effectively with
cancer, its physical symptoms and its treatment.
• Distress extends along a continuum, ranging from common normal feelings of vulnerability,
sadness, and fears to problems that can become disabling, such as depression, anxiety, panic,
social isolation, and existential and spiritual crisis.”

Spiritual Development

• Developmental Perspective

• Meaning changes over one’s lifetime in response to age, situation, triggers
• We need to be aware of spiritual developmental stages to help understand stage related spiritual responses to illness, loss,

stress

• Stages of Spiritual Development

• Intuitive-Projective
• Mythic-Literal
• Synthetic-Conventional
• Individuative-Reflective
• Conjunctive-Faith
• Universali-zing Faith
• GEROTRANS-CENDENCE

Spirituality in Grief/Bereavement

• Finding meaning out of loss
• Source of comfort
• Trigger for spiritual quest-Why me? Emptiness, longing for God or the transcendent
• Support - spiritual communities
• Rituals, prayers, traditions
• Working with a chaplain or pastoral counselor

Finding Meaning in the Midst of Suffering

• The meaning of life may change as people encounter illness, either in themselves, their loved ones,
or their patients, or the prospect of dying. Some people find meaning in suffering in terms of self-
improvement or a trigger for enlightenment.

Spiritual Distress and Health Outcomes

• Spiritual distress is associated with poorer health outcomes, including :
• Greater physical pain (Delgado, 2016, Harris, 2017)
• Depression (McGrath, 2002; Hurd, 2010)
• Anxiety (Delgado, 2016)
• Poor emotional well-being (Salsman, 2015)
• General distress (Salsman, 2015)
• Diminished quality of life (Jafari, 2015)
• Lower satisfaction with life (Siddall, 2017)
• Increased risk for suicidal ideation. (Trevino, 2014)
• Requests for euthanasia and physician-assisted suicide (Radbruch, et.al. 2016)

Diagnoses (Primary) Key Fature from History Example Statements

Existential Lack of meaning / questions meaning about one’s own “My life is meaningless”
Abandonment God existence / Concern about afterlife / Questions the meaning of “I feel useless”
or others suffering / Seeks spiritual assistance
Anger at God or
others Lack of love, loneliness / Not being remembered / No Sense of “God has abandoned me”
Concerns about Relatedness “No one comes by anymore”
relationship with
deity Displaces anger toward religious “Why would God take my child… its not fair”
Conflicted or representatives / Inability to Forgive
challenged belief
systems Closeness to God, deepening relationship “I want to have a deeper relationship with God”

Spiritual Despair/ Hopelessness Verbalizes inner conflicts or questions about beliefs or faith “I am not sure if God is with me
Distress/ Conflicts between religious beliefs and recommended anymore”
Concerns Grief/loss treatments / Questions moral or ethical implications of
therapeutic regimen / Express concern with “Life is being cut short”
(Puchalski, Ferrell, et.al., 2009) Guilt/shame life/death and/or belief system “There is nothing left for me to live for”

Reconciliation Hopelessness about future health, life Despair as absolute “I miss my loved one so much”
hopelessness, no hope “I wish I could run again”
Isolation for value in life
“I do not deserve to die painfree”
Religious specific Grief is the feeling and process associated with a loss of
Religious/Spiritual Struggle person, health, etc. “I need to be forgiven for what I
did”
Guilt is feeling that the person has done something wrong or “I would like my wife to forgive me”
evil; shame is a feeling that the person is bad or evil “Since moving to the assisted living I am not able to go to
my
Need for forgiveness and/or reconciliation of self or others church anymore”
“I just can’t pray anymore”
From religious community or other
“What if all that I believe is not true”
Ritual needs / Unable to practice in usual religious practices
Loss of faith and/or meaning / Religious or spiritual beliefs
and/or community not helping with coping

Criteria for Spiritual Distress Diagnosis

A spiritual issue becomes a diagnosis if the following criteria are met :

1. The spiritual issue leads to distress or suffering (e.g., lack of meaning, conflicted religious
beliefs, inability to forgive).

2. The spiritual issue is the cause of a psychological or physical diagnosis such as depression,
anxiety, or acute or chronic pain (e.g., severe meaninglessness that leads to depression or suicidality,
guilt that leads to chronic physical pain).

3. The spiritual issue is a secondary cause or affects the presenting psychological or physical
diagnosis (e.g., hypertension is difficult to control because the patient refuses to take medications
because of his or her beliefs; severe spiritual distress that results in pain exacerbation).

•
• (Puchalski, Ferrell, et.al., 2009)

Spiritual Strengths Spiritual Distress

Connection Love, Belonging, Connection to Grief/loss/bereavement, Isolation Spiritual
others, the significant or sacred Community not helping with

Spiritual Distress coping, Abandoned by God or others,
and Spiritual Disconnection from the significant or sacred
Strengths
Seeking inner peace, Ability

Peace to forgive and to be Guilt/shame, Despair , Lack of inner peace,
forgiven, Hopefulness, Hopelessness, Need for forgiveness or
Meaning / reconciliation of self or others
Purpose
Acceptance, Humility
Transcen-
dence Seeking meaning, Acceptance Meaninglessness, Spiritual struggle,
Fulfillment Existential suffering , “Why Me”?

Strengthening personal faith or Loss of faith or questioning faith, Inability
spiritual beliefs, Communication with to feel God’s or Other’s presence,
higher being or other, Inner harmony Conflicted or challenged belief systems,
with belief system, Unable to engage current spiritual

Spiritual practices (meditation, practices, Unable to deepen relationship to
prayer), Desire to deepen God/Other
relationship with God/Other

Difference of Distress

• Physical Distress

Distress directly relating to the body, as distinguished from the mind or spirit. Examples include pain, fatigue, problems
with transportation, bathing/dressing, breathing, and memory/ concentration.

• Psychological Distress

Psychological distress is largely defined as a state of emotional suffering characterized by symptoms of depression (e.g.,
lostinterest; sadness; hopelessness), anxiety (e.g., restlessness; feeling tense), failure to verbalize ways to address
problem, dependence on others, avoidance, irritability, withdrawal from others, hyperactive, tearful, and inappropriate
laughter. (Mirowsky, & Ross, 2002, Ridner, 2004)

• Social Distress

Social distress is the emotional experience resulting from loss, threat, or damage to social relationships with others and
from the social environment (e.g. financial issues, housing, school or career concerns, and cultural/language issues).

NCCN, 2017

Recommendations

✓ Spiritual distress is a global pandemic.
✓ Spiritual distress should be addressed with the same intensity as any other type of distress.
✓ All members of the care team should assess for spiritual distress as well as psychosocial and

physical distress and recognize spiritual distress from normal spiritual growth.
✓ Treatment of spiritual distress and suffering is through accompaniment of the patient,

compassionate listening and presence, referral to spiritual care professionals and other modalities
to be discussed in module 5.
✓ It is critical for spiritual care professionals to be members of care teams; they have the expertise to
deal with complex spiritual distress in patients and families