Existential and Spiritual Issues in

Palliative Care

D R V I D YA V I S W A N AT H
 Spirituality

 Spirituality is that aspect of Humanity that refers to the way

individuals seek and express meaning and purpose and the
way they experience their connectedness
 to the moment, to self, to others,
 to nature, and the significant or the sacred.

The Consensus conference on improving the quality of spiritual care as a

dimension of palliative care 2009
 Religion

 Religion is a particular system of faith and worship with

structured customs and rituals.

 It can provide answers to some spiritual questions

 One can have a well developed spirituality personality

without believing in God or practicing a religion.
 Elements affecting spirituality

▪ Values and beliefs

▪ Experiences
▪ Relationships
▪ Assumptions
▪ Motivation
▪ Dreams
▪ Thoughts
▪ Emotions
 Dealing with Loss

Physical
Distress

Social
Distress

Psychological
Distress

Spiritual
Distress
 Characteristics of spiritual suffering

• Pain, constant & chronic

• Insomnia
• Withdrawal, depression
• Guilt/self-loathing
• Conflict
• Turbulence
(family, palliative team, friends)
• Hopelessness
• Lack of sense of humor
• Inability to forgive oneself
• Despair, fear, dread
 Recognizing signs of spiritual distress

 Physical distress unresponsive to standard therapy

 Patient acting out or refusing to cooperate
 Emotional withdrawal Physical
 Fears of Distress

Loss of control Social

Increasing dependence Distress

 Denial
Psychological
Distress

Spiritual
Distress
 Intangible questions

 Why me?
 What have I done to deserve this?
 Am I being punished?
 Why am I being made to suffer?
 Is there a God?

 What will happen to me at the time of death?

 What will happen after?

 Will I be remembered?
 Will I be forgiven?
 What about my loved ones?
 Spiritual Pain

When one is constantly troubled by these

questions, it can manifest as

 Despair
 Disconnect
 Disharmony
 Helplessness
 Hopelessness
 Meaninglessness
 Feeling of abandonment
 Isolation
 Fear of Death
 Anger
 Betrayal
 Loss of Identity
The Namasthe of Caring

The Namasthe of Caring

▪ Unravelling the Mystery of Spirituality
▪ Review of Relevant Evidence
▪ The Health Care Professional as the Tool
for Spiritual Care
▪ Grounding the Principles through Role
Plays and Case Studies
 Identifying Spiritual Distress

 Therapeutic Presence : Our approach, persona, cultural

humility
 Identifying Spiritual Distress :

 Cues from the conversation + 10 = Spiritual

Perfection /
+5 = Spiritual Poise
 Spectrum of Distress wellbeing &
fortitude
0 = Spiritually
Reflective, at
risk, brewing
concerns

-5 = Spiritual
Distress,
struggles

-10 = spiritual
void /despair
Fig : Dr Nandini Vallath
Pre Conf Workshop IAPCON 2023
 Identifying Spiritual Distress

Identifying Needs

Need for Validation Need for connectedness /

wholeness

Validation to Religious Validation within family, Meaning, purpose and Peace, continuity, dignity
beliefs, God concept society hopes (may/ may not be and connectedness
connected with their
Roles, responsibilities,
religion / faith)
relationships

Pre Conf Workshop IAPCON 2023

 Shekhar’s Story

 Shekhar around 30 yrs of age , a young executive relocated from

Singapore , travelled for his treatment and reached us ..
 His diagnosis was Stage 4 Lung cancer , being treated for 4 years , had
a 2 year old child …conscious decision to have a child .
 Came to us with extensive bone metastases and severe pain.
 On exploration , he was very invested in his treatment options , wanted
to fight…..
 Shekhar’s Distress

Cues “I miss carrying my daughter ”

Spectrum of Wellness Spectrum

Distress

Needs Need for Connectedness and

Validation

Pre Conf Workshop IAPCON 2023

 How do we address Spiritual Distress ?

Gentle exploration – Ask – Tell – Ask

 Open ended questions

 Sharing Life stories
 Active Listening
 Assessment
 Setting realistic goals
 Being non judgmental
 Why should we address Spiritual Distress?

Spiritual Issues can

 Impact physical and psychological symptoms and
aggravate them
 Influence treatment decisions and impact Quality of Life –
more hospital stays and aggressive EOL care

When physicians deconstruct suffering to its physical

dimension while ignoring the psychological &spiritual pain,
they not only fail to relieve suffering, but compound it.
 Addressing Spiritual Distress

What did we do?

Attributes Fortitude

Affect and Open, questioning and finding answers,

Behaviour reflective thinking
Actively engaging with the team, family:
brings clarity in decisions

Along the Physical symptom relief and facilitating
Pathway carrying his child through positioning and
most importantly having conversations with
his very protective mother and his struggling
wife
Shared decisions on the Care
Plan, engage with dignity and
set realistic goals

Pre Conf Workshop IAPCON 2023

 SPIRITual History

 SPIRIT emphasizes:
 Spiritual belief system
 Personal spirituality
 Integration with a spiritual community
 Rituals and restrictions spirituality requires for health care
 Implications of spirituality and religion for medical care
 Terminal events planning (end-of-life issues)

Maugans TA. The spiritual history. Archives of family medicine. 1996 Jan 1;5(1):11-6.
 Assessment Tools

Puchalski CM, Romer AL. Taking a spiritual history allows Anandarajah G, Hight E.Spirituality and medical practice:
clinicians to understand patients more fully. J Pall Med using the HOPE questions as a practical tool for spiritual
2000;3:129-37. Copyright, Christina M. Puchalski, MD, assessment. Am Fam Physician. 2001;63(1):81-89
1996.
 Spiritual Demeanours

This study found four factors representing four

spiritual demeanors in Indian palliative care patients.
• Factor 1 :Shifting moral and religious values
• Factor 2 :Support from religious relationship Bhatnagar S, Noble S,
Chaturvedi SK, Gielen J.
 Factor 3 :Existential blame
Development and
 Factor 4 :Spiritual trust – Psychometric Assessment
 fear and worries regarding what will happen to of a Spirituality
Questionnaire for Indian
the patients themselves or their families in the
Palliative Care Patients.
future or after their death. Indian J Palliat Care. 2016
 feeling of unfairness and injustice, such as: Jan-Mar;22(1):9-18. doi:
Why did they fall sick? Are the sins committed 10.4103/0973-
by patients unforgiveable? 1075.173939. PMID:
26962275; PMCID:
 who is to blame for this illness: The patients
PMC4768456.
themselves or others?
 In this study, this fourth-dimension turned out to
be an important aspect of spirituality among Indian
palliative care patients.
Bhatnagar S, Noble S, Chaturvedi SK, Gielen J. Development and Psychometric Assessment of a Spirituality
Questionnaire for Indian Palliative Care Patients. Indian J Palliat Care. 2016 Jan-Mar;22(1):9-18. doi: 10.4103/0973-
1075.173939. PMID: 26962275; PMCID: PMC4768456.
 Helpful Questions

Are you at peace?

Steinhauser KE, Voils CI, Clipp EC, Bosworth HB, Christakis NA, Tulsky JA. "Are you at
peace?": one item to probe spiritual concerns at the end of life. Arch Intern Med.
2006;166(1):101-105.

What gives you your sense of meaning and purpose?

What really matters to you in your life?
 Principles of spiritual care
Spirituality an essential component of each person
• It is an ongoing issue – readdress it over time
• Demonstrate respect for
patient’s values, autonomy,
vulnerability. Do not impose!

• KNOW YOURSELF !
 Spiritual Healing

• Spiritual care aims to sustain one’s sense of being a person with value,
dignity, and worth.
• A supportive Presence for those who desire to be accompanied
• Active Listening and Respectful Silence
• End of life represents a chance for persons to resolve or come to terms
with their mistakes, failures, regrets, and unfinished business
• Leaving behind a spiritual legacy
• Reconnecting with the Community
Healing doesn’t
mean the damage
never existed, it
means the
damage no
longer controls
our life
 Acknowledgments

 All my colleagues, teachers and patients and their

caregivers
 Dr Mangesh Prabhulkar’s
photographs

Planted in memory of a loved one at the Hospice