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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)