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Walking Alongside Geriatric Cancer
Patients in their Grief and Distress
Evelyn Hunter, MSW, LCSW, OSW-C
Objectives
Participants will learn the importance of screening for distress and continued follow-up with geriatric cancer patients and caregivers.
Participants will be able to have an understanding of grief with patients
with cancer.
Distress
In a sentence how would you define distress?
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Symptoms of distress
Sadness, fear, anger, helplessness
Depression, anxiety, panic
Questioning faith
Withdrawal / isolation from people
Concerns about illness
Concerns about role
Physical symptoms
Concerns about practical problems
Concerns about family
Distress
National Comprehensive Cancer Network (NCCN) definition:
“Distress is an unpleasant experience of a mental, physical, social or spiritual
nature.”
Requires a screening
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Distress Screening
Given on at least one pivotal appointment
May use other screening tools
Stress Thermometer / Stress Scale
Scale 1-10
Follow up with patient when distress is 4 or more on stress thermometer
Assess for stated problems
Adapt according to local needs
Initial Diagnosis
Initial stress and grief (“Hurry Up and Wait”)
Grief process begins
Some will have Post Traumatic Stress Symptoms of hyperarousal and intrusive thoughts
Often without assistance / assessment of social work
Coping Skills
Behavioral health history
Substance use
Emotional intelligence
Communication
Cognitive ability
Organizational skills
Self-efficacy
Culture
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Difficulty coping with stress
Social support
Trait anxiety
Adverse events
Number of life stressors
Current state of grief
other grief or loss
Maladaptive coping skills
Increases in stress
Delayed diagnosis testing
Difficulty tolerating uncertainty
Increased levels of pre-operative anxiety
Increased levels of post-op pain
Genetic testing
Caregiving concerns
Being cared for
Caring for someone
Basic Needs
Housing, Utilities, Food, Medications, Transportation
Ask…..do you go without food or take medications differently to pay other
bills?
Emphasize paying basic needs first
Have resources for consumer and medical debt
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Behavior Health
Mental Health
Counseling
Psychotropic medications
Cognitive Abilities
Substance Use
Childhood events
Other events in life
Family & Friends
Social Support
Significant other
Children
Spiritual
Concerns
• Do you have a faith or spiritual belief that you value?
• Attend within their faith heritage?
• Supportive
• Able to go
• How does cancer journey impact their belief?
Physical Problems
When physical symptoms are felt to be controlled by medications then look to distress / behavioral health as reasons for complaints
Appearance
Bald is beautiful
Both men and women are affected
Frank
Level of Functioning
Assessing for falls
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Assessment – ADLs / IADLs
ADLs
Personal Hygiene
Dressing
Toileting
Ambulating / Transferring
Feeding
IADLs
Housework
Meals
Medication management
Shopping
Use of telephone
Transportation
Assessment – Financial
Income and money management
Debt
Assets
Qualify for Pharmaceutical grants
Qualify for grants to help with basic needs
Medicare / Medicaid Programs
Medicaid QMB / Extra Help (Medicare.gov)
Assessment – Work
Type of Work
Over 50 employees – eligible for ADA / FMLA
ST / LT disability
SSD
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Assessment – Safety
Living arrangements
Caregiver
Home needs
Domestic Violence
Suicide
Ongoing assessment and support
Common stressors during treatment
Sleep disturbance
GI symptoms
Fatigue
Change in taste
Numbness in hands and feet
Loss of hair
Contribute to failure to complete treatment or refuse treatment
Ongoing assessment
Goal – Quality of Life
Reassess
Biological
Psychological
Social
Spiritual
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Ongoing support & assessment
Process of engagement allows for
Opportunity to increase coping skills
Patient / caregiver opportunity to vent feelings
Normalization of events and feelings
Encouragement
Breaks up a long chemotherapy day
Elisabeth Kübler-Ross
Stages of grief
Denial
Anger
Bargaining
Depression
Acceptance
Denial
First – shock, disbelief
Can come and go
Wake up
Looking good on the outside – “I have to be strong for everyone else”
Common newly diagnosed
Concerns about being a burden
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Anger
Loss of control
Expectations not met
Life turned upside down
Anger at person who will die
Patient angry because they will die
Anger because ‘that’s not how it’s supposed to be’
Bargaining
You will do anything for this not to happen
What if…..
If only…..
Attempt to negotiate out of the hurt
Sadness
Appropriate response to loss
Not abnormal
May feel as if last forever
Withdraw / Isolate
Screen for depression
Screen for suicidal ideation
Columbia suicide severity rating scale (C-SSRS)
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Acceptance
Accepting a reality of things that have occurred
Readjustments
Changing of roles
Encourage to listen to their needs, relying on others
Survivorship
Other common emotions
Numbness
Fear, especially fear of unknown
Isolation & loneliness
Overwhelm
Worry, robs of the present
Guilt
Gratitude
When you feel bad, find a
person to talk to and cry with, to
tell of your anger and other
helpless feelings.
Clarissa Pinkola Estes
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Limitations to stages of grief
Stages are responses to feelings that may last minutes, hours or days
Individual
Not linear
“The five stages of grief are a framework that makes up our learning to live
with the one we lost. They are tools to help us frame and identify what we may be feeling” Elisabeth Kübler-Ross
Reactions to grief – Physical
GI disturbance
Sleep disturbance
Weak, dizzy
Restless, agitated
Decrease in immune system
Change weight, sex drive
See MD first
Reactions to grief – Emotional
Regret, guilt
Anxiety, panic
Agony, anguish
Shame
Minimizing *
Low self-esteem, hopelessness
Attitude, humor
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Reactions to grief – Mental
Decreased concentration
Forgetfulness
Surreal
Vivid dreams / nightmares
Difficulty making decisions
Feeling overly critical
Be mindful of depression / anxiety, acute stress; substance use; suicidal ideation
Reactions to grief – Behavioral
Avoidance
Erratic behavior
Frantically busy *
Dependency on others *
Difficulty communicating
Needing to talk / needing not to talk
Explore thoughts and feelings
Reactions to grief – Spiritual
Loss of faith
Angry at God, or religious institution
Desire for change or to become a better person
Feel a closer connection to faith heritage
Grief is not opposite of faith
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Cancer Journey
Every journey is different
Circumstances
Personalities
Other losses
Each loss is unique
No event feels the same
Recovery time between losses
Factors that help with coping
• Having enough information about diagnosis and treatment
• Caring medical team, supportive; reassuring
• Good communication
• Good follow through
• Normalizing and acknowledging feelings
• Working toward quality of life
Factors that help with coping
Attitude – generally positive
Takes one day at a time
Optimistic versus pessimism
Not feeling helpless during a crisis
Able to meet challenges
Not prone to becoming highly stressed
Fighting spirit
Humor – dark humor
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Factors that hinder coping
General negativity
Worry about the future
Feels helpless in challenge
Nervous, distressed, easily overwhelmed
Reluctant to persist in face of stress
Having no personal philosophy of life or belief system that gives perspective to adverse events
Other factors related to coping with
grief
Mental health, substance use
Emotional Intelligence
Communication, organizational skills
Cognitive ability
Self-efficacy
Culture
Life experiences
Types of loss
Principles to focus on
Love
Strength
Joy
Learning
Hope
Patient and caregiver’s definition of quality of life
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References:
Bucher, J., Houts, P., Ades, T. (2001). Family caregiving: the essential guide to cancer caregiving at home. (2nd ed.). Atlanta: American Cancer Society.
Emerson, N., Leight, P., Moonan, S., et al. (2005). Finding the “CAN” in cancer. (n.p.): Lulu.com.
Holland, D. (2011). Grief and grieving: An understanding guide to coping with loss and finding hope and meaning beyond. New York: Penguin Random House LLC.
Holland, J., Lewis, S. (2000). The human side of cancer: living with hope, coping with uncertainty. New York: Harper Collins Publisher.
Silver, J. (2009). What helped get me through: cancer survivors share wisdom and hope. Atlanta: American Cancer Society.
Warner J. (2018). Grief day by day: simple practices and daily guidance for living with loss. Emeryville: Althea Press.
Andersen, B., Keicolt-Glaser, J., Glaser, R. (1994) A biobehavioral model of cancer stress and disease course. American Psychology Association (Vol. 49, No.5, 389-404) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2719972
Merluzzi,T., Philip, E., Liu, H., Yang, M., HeitzmannRuhf, C., Conley, C. (2017) Self-efficacy for coping with cancer: Revision of the cancer behavior inventory. Psychological Assessement Vol.30, No. 4, 486-499)
NCCN clinical practice guidelines in oncology [Distress Management]. (2018, February 23).
Funk, R., Cisneros, C., Williams, R.C. et al. Support Care Cancer (2016) 24: 2861. https://doi.org/10.1007/s00520-016-3099-0
Langford, D., Cooper, B., Paul, S., et al. (2017). Evaluation of Coping as a Mediator of the Relationship Between Stressful. American Psychology Association, Health Psychology (Vol.36, No.12, 1147-1160)