Presented at the National Psycho-oncology Seminar in Concorde Inn KLIA, Sepang on 28-29 September 2015.

1. Psychological and
psychospiritual aspect
of cancer management
DR UMI ADZLIN SILIM
CONSULTATION LIAISON PSYCHIATRIST
HOSPITAL KUALA LUMPUR
UMIADZLIN@GMAIL.COM

2. In A Glance
Optimal Care
Model of psychological support: 4-tier Level of Care
‘Sufferings’ in cancer patient: physical, psychological, social, spiritual
Focus on ‘spiritual’ including spiritual assessment
Managing ‘suffering’
◦ Identifying suffering
◦ Responding to suffering
What to say when you do not know what to say
◦ Healing conversation/ Therapeutic communication)
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3. References
1. Lecture Notes Spiritual & Healing, Gawler’s Foundation, Melbourne, Victoria
2. Clinical Practice Guidelines for Psychosocial Care in Adult Cancer Patients, Australia, 2014
3. Clinical Guidance for Responding to Suffering in Cancer Patients, Australia, 2014
4. Psychological and emotional support provided by McMillan Professionals, Evidence Review,
UK, 2011
5. Various reading, courses, reflections on emotional validation
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4. Optimal Cancer Care
Multidimensional
Provided by wide range of health professionals, non-health professionals & self-management
Encompass physical, psychological, social, spiritual & existential
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5. Model of Psychological Support
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6. ‘Suffering’ in cancer
patient
NEW, EMERGING AREA OF RESEARCH
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7. ‘Suffering’ in cancer
Suffering is complex and can include physical, psychological, social and spiritual reactions.
Although suffering causes unique experiences of distress for the individual, it has many common
features associated with actual or perceived loss. These include loss of meaning or hope, loss of
physical wellbeing, emotional strength, loss of independence, isolation or changed relationships.
People who are suffering may also face reduced capabilities, for example in their mobility,
speech, concentration or daily activities (such as work roles). These challenges and losses may
overwhelm them, leading to a sense of personal depletion and reduced resilience.
Individuals’ social and cultural environment, as well as their own beliefs and life experiences, may
influence the way in which they deal with suffering.
Conceptualisation, assessment and interventions to alleviate suffering in the cancer context:
a systematic literature review (2012).
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8. ‘Suffering’ in cancer
The person who is depressed is invariably suffering
The person who is suffering is not invariably depressed
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9. ‘Suffering’ in cancer
It is acknowledged that there are other terms that are used synonymously with ‘suffering’, such
as demoralisation; existential distress; psycho-existential suffering; psycho-spiritual distress;
spiritual pain; and total pain.
As suffering is often linked to issues of spirituality, and many studies focus on this concept, the
terms ‘spirituality’, ‘spiritual issues’, ‘spiritual distress’ and ‘spiritual suffering’ are also used
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10. Aspects of suffering
Physical
Psychological
Social
Spiritual
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11. Holistic Model: Looking at human being
as consisting of following dimensions
Body
Mind
Emotions
Spirit
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12. What is Spirituality
for you?
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13. ASPECTS OF SPIRITUALITY
Connectedness/relatedness
Relationship to the divine, transcendental, supersensible, invisible
Something greater than self
Existential questions of life/existence
Meaning & purpose
Values, ethics, philosophy, religion, science, art…
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14. SPIRITUALITY & RELIGION
RELIGION
Organised system/community of faith
SPIRITUALITY
Individualized system of beliefs/values
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15. UNDERSTANDING SPIRITUALITY
EVERYDAY, NORMAL DEFAULT
CONSCIOUSNESS
Horizontal Dimension
EXPANDED CONSCIOUSNESS
Vertical Dimension
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16. UNDERSTANDING SPIRITUALITY
HORIZONTAL
Task, goal oriented
Doing, busyness
Time pressure
Excessive thinking
Outward orientation
Stress, anxiety, fear
Health issues
Distractions/addictions
Separation/disconnect
Restless discontent
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17. UNDERSTANDING SPIRITUALITY
VERTICAL
Process, value orient
Being mode
Present, mindfulness
Calm mind, meditation
Inward orientation
Inner peace, stillness
Alone time essential
Belonging, oneness
Integrity-Inner peace
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18. UNDERSTANDING SPIRITUALITY
HORIZONTAL
Task, goal oriented
Doing, busyness
Time pressure
Excessive thinking
Outward orientation
Stress, anxiety, fear
Health issues
Distractions/addictions
Separation/disconnect
Restless discontent
VERTICAL
Process, value orient
Being mode
Present, mindfulness
Calm mind, meditation
Inward orientation
Inner peace, stillness
Alone time essential
Belonging, oneness
Integrity-Inner peace
UMIADZLIN@GMAIL.COM

19. Spiritual Qualities: Vertical Dimension
Acceptance
Forgiveness
Humility
Patience
Gratitude
Compassion
Surrender
Purpose
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20. Models of spiritual assessment
FICA
Faith & Belief & Meaning
Importance/Influence
Community
Address in Care
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21. Faith, Belief & Meaning
Do you consider yourself spiritual or religious? Do you have spiritual beliefs that help you cope
with stress?
What gives your life meaning?
Are spirituality or religion important in your life? How well are those resources working for you
at this time?
What are your sources of hope, meaning, comfort, strength, peace, love and connection?
What do you hope for?
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22. Kepercayaan & Erti Hidup
Adakah anda seorang yang mengamalkan agama? Bagaimana kerohanian/keimanan membantu
anda menangani apa yang anda hadapi?
Apa yang memberi makna atau erti dalam hidup anda?
Adakah aspek kerohanian atau agama suatu yang penting dalam hidup anda? Bagaimanakah ini
membantu anda pada masa sekarang?
Apakah sumber pengharapan, makna hidup, keselesaan, kekuatan, ketenangan, rasa kasih
saying dan perhubungan?
Apa yang harapan anda?
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23. Importance & Influence
What importance does faith or belief have in your life?
What role do your beliefs play in your healthcare decision-making?
What aspects of your personal spirituality and practices are most helpful to you?
What are the things at this time in your life that are most important to you or that concern you
most?85
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24. Kepentingan & Pengaruh
Bagaimana pentingnya kepercayaan/keimanan dalam hidup anda?
Apakah peranan kepercayaan/keimanan anda dalam membuat keputusan mengenai kesihatan
anda?
Apakah aspek kerohanian dan amalan yang paling membantu anda?
Apakah perkara dalam kehidupan anda sekarang yang paling penting untuk anda?
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25. Community
Are you part of a spiritual or religious community? Is this of support to you and how? Is there a
group of people you really love or who are important to you?
Are you involved in an organised religion?
Who else should we get involved at this point, to help support you through this difficult time
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26. Komuniti
Adakah anda sebahagian daripada perkumpulan/kariah/usrah kerohanian atau agama? Adakah
ini memberi sokongan kepada anda dan bagaimana? Adakah mereka kumpulan yang penting
bagi anda?
Adakah anda mengamalkan agama?
Siapakah lagi yang perlu dilibatkan sekarang, untuk membantu anda melalui waktu yang sukar
ini?
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27. Address/Action Care
How would you like your healthcare provider to use this information about your spirituality as
they care for you?
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28. Tindakan
Bagaimanakah anda mahu pihak kesihatan menggunakan maklumat mengenai kerohanian yang
telah kami tahu ini dalam penjagaan kesihatan anda?
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29. Managing ‘Suffering’
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30. C. The importance
Acknowledging and responding to
suffering, including spiritual issues, in
patients and their families is an
important component of clinical care.
(Naden 2006; Daneault 2006; Ehman 1999; Grant 2004; Ohlen 2004)
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31. B. Identifying suffering
Recognising signs and symptoms of
possible suffering, including verbal,
emotional and behavioural cues, is an
important role for healthcare
professionals
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32. C. Responding to suffering: Assess
It is advisable to briefly assess patients’ level of
suffering, including spiritual needs, soon after
diagnosis in order to triage those patients with high
or urgent need for support or intervention.
Additional assessments are advised at readmission,
change in prognosis, at the end of a treatment
protocol and at end of life.
(McGrath 20038; Murray 20079; Adelbratt10; Lethborg 200811)
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33. C. Responding to suffering: Needs
Determine patients’ needs for
psychosocial care and establish the
personal resources and support
networks they can draw on.
(Ohlen 200212; Lethborg 200811)
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34. Responding to suffering: Communication
Demonstrate an ongoing openness to listening
and responding to patients’ and families’
suffering by acknowledging the issue,
validating, normalising their feelings, showing
empathy and inviting patients and family
members to voice concerns as they arise.
(Naden 20063; McCord 200413; Ehman 19995)
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35. C. Responding to suffering: Families
Consult with family members, if available and with the
patient’s permission, to obtain further information about
the patient’s spiritual beliefs, to assist in their spiritual care.
Acknowledge patients’ and families’ different cultural and
religious needs, and accommodate them where possible
while recognising one’s limitations in knowledge or skills
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36. Responding to suffering: Team approach
Following assessment and with the patient’s consent, ensure outcomes and other
relevant information are recorded and communicated to other appropriate
healthcare professionals.
Confirm which healthcare professionals can respond to the different aspects of a
patient’s suffering, remembering that people may already have existing supports
in the community. If a relevant healthcare professional is not available in the
multidisciplinary team (MDT), the referral may be made to one outside the team
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37. What to say when you
do not know what to
say?
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38. Healing
Conversation
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39. Therapeutic
Communication
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40. Acknowledge
Validate
Normalize
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41. Emotional Validation - defined
Validation is the recognition and acceptance of another person's internal
experience as being valid.
Emotional validation one way to communicate acceptance, recognition that
thoughts/behavior/feelings/sensations are understandable but doesn’t mean
approving or agreeing
Emotional invalidation, when your own or another
person's emotional experiences are rejected, ignored, or judged
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42. Get the ‘Feel’
ACTIVITY 1
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43. Scenario
You have just arrived home after a long day of work and a
very bad traffic jam. You simply feel the need to vent out…
“The traffic was horrible today. Smart tunnel closed down &
a car broke down, that’s a complete recipe for disaster. To
make things worse, you know, my car’s air condition is not
functioning. And all this happened after a long day of my
clinic day today. So annoying. I simply feel so exhausted
now. Really spoilt my mood…”
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44. How do you feel after this response?
Take 0 as your baseline of how you feel at that time
If you feel better rate yourself from +1 to +10
If you feel worse rate yourself from -1 to -10
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45. Response 1
“Hey..Can’t you stopped complaining? I think I have
heard this more than 100 times before. By all means I
am not a transport minister who can do something or
what... I am also stuck in traffic jam but I bear with it
and the last thing I would want to hear is your
endless complaints…. and that your mood will be
spoilt the whole night.. That’s terrible”
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46. Response 2
“Hmmmm… okay, fine. In that case you don’t have to
do anything tonight. I will order pizza”
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47. Response 3
“Well, you know nobody can run away from traffic
jam in KL. I think you should be more patient and do
productive things while driving like listening to self
motivation talk or spiritual reminders… you can listen
to relaxing music if you like..”
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48. Response 4
“Ohhhh dear, that really sounds bad.. Sounds like the
traffic jam is extraordinary today”
“That’s absolutely annoying if all you want is to get
home as early as possible after your long clinic day.
Of course all these will affect how you feel now..”
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49. Do you get the ‘feel’?
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50. Response 1: Authoritarian/
Emotionally Disapproving Style
“Can’t you stopped complaining? I think I have heard this more than
100 times before. By all means I am not a transport minister who can
do something or what... I am also stuck in traffic jam but I bear with
it and the last thing I would want to hear is your endless
complaints…. and that your mood will be spoilt the whole night..
That’s terrible”
What will be your most likely response? “What? You will never
understand. This is your fault that we have to stay in KL”
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51. Response 2: Permissive/Emotionally
Permissive/Following Style
“Hmmmm… okay, fine. In that case you don’t have to do
anything tonight. I will order pizza”
What will be your most likely response?“Hmmm.. Okay..” (I
can do this to get what I want next time)
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52. Response 3: Emotionally dismissive/
Directing/Advice Giving Style
“Well, you know nobody can run away from traffic jam in KL. You
have to have more patience in life. By all means, you can do
productive things while driving like listening to self motivation talk or
spiritual reminders… you can listen to relaxing music if you like..” (No
acknowledgment of emotion)
What will be your most likely response? “Do you think I do not know
of all those.. I just want to share, I am not asking you to advise me..”
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53. Response 4:
Emotionally validating/ Guiding
“Ohh dear.. That really sounds bad! Sounds like the traffic jam is
extraordinary today”
“That’s absolutely annoying if all you want is to get home as early as
possible after your long clinic day. Of course all these will affect how
you feel now..” (No advice giving or trying to fix or solve problems)
What will be your most likely response? “Yes.. I guess I need to wind
down a bit now and I think I will be fine…”
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54. 6 Level of Emotional Validation
1. Be Present
2. Accurate Reflection
3. Naming Emotions
4. Understanding one’s behavior from past history
5. Normalizing
6. Radical Genuiness
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55. Sitting With
Emotions
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56. On Sitting With & Empathy
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57. Accurate Reflection
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58. Naming Emotions
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59. Understanding one’s
behavior from past
history
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60. Normalizing
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61. Radical Genuiness
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62. Case Vignette 1
45 y.o Khalid was a company director, a divorcee, who was urgently
referred to oncology unit. He had a 6 month history of progressive left
lower limb pain and motor weakness, and upper thoracic pain. CT and
MRI scans had identified a large left iliac bone mass and mid-thoracic
spine mass with spinal cord compression. Khalid had a biopsy and the
diagnosis was confirmed as a metastatic adenocarcinoma. Khalid was
informed that the cancer was incurable and treatment was likely to
include steroids, morphine, radiotherapy and chemotherapy with
palliative intent.
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63. He became agitated and angry when
potential loss of lower limb, bladder
and bowel function was discussed,
shouting “But this can’t happen now. It
just can’t!”
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64. The oncologist listened to Khalid then
responded, “I can’t imagine how
distressing this must be for you. Are
you able to tell me what the most
urgent concern is for you right now?”
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65. Khalid replied that he and his fiance planned to get
married next month . He said he didn’t know how
he could tell Lisa about his diagnosis. After the
oncologist offered to speak to Lisa, Khalid became
less distressed and indicated that he wanted to find
out more about what was ahead for him.
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66. Over the next few days Khalid was treated for pain, and palliative
radiotherapy was commenced. The Nurse noted that Khalid preferred
to have the curtains drawn around his bed during the day. Although
Lisa had arrived and spent most of the day in the ward, Khalid did not
seem to converse much with her. The Nurse introduced herself to
Khalid and reflected on the speed with which he had been diagnosed
and transferred to an unfamiliar environment: “So much has happened
so quickly it must be hard to get your head around it.”
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67. Khalid revealed that he felt guilty about taking so long to see
the doctor about his symptoms, and that now he would be a
burden on Lisa, adding “That’s if I even make it.” The Nurse
asked “What does your heart tell you?” to which Khalid
expressed a fear of dying, and the concern that the faith that
had played an important part in his life wasn’t helping him
handle things. Khalid accepted the offer to talk to someone.
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68. Over several visits he was able to explore values and talk about regrets
about the way he had lived his life, including the estrangement from his
children from his first marriage. He also agreed to see the physiotherapist to
better understand his current functional ability and learn about expectations
for progress and any strategies to improve strength. Despite initial
reluctance to accept referral to the palliative care team he later expressed
relief that he no longer had to “pretend to hold it together”. He felt that
having more information about his prognosis helped him to plan more
realistically for his work and finances, and make decisions about ongoing
care which he chose to have back home.
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69. Responding to Sufferings:
Benefits to Patient
Feel supported, less hopeless, less overwhelmed, less distressed
Better able to utilize coping skills
Reduce risk to develop more severe psychological disturbances
Come to terms to loss
Being affirmed on meaning & values
Create meaningful ‘end’
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70. Responding to Sufferings:
Benefit to Professionals
Opportunity for self growth
Increase clinical effectiveness – asking compassionate questions, validating &
showing empathy
Increase personal reward & satisfaction
* Adequate training & practice & enhancing ability to reflect your own
emotions & spirituality is important
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71. Thank you
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