presentation 205 sagan living with change, dx to death

ALS:Living with Change & Loss,

from Diagnosis to Death

by Gerri Sagan, LSW, CHP-SW

ALS Association Northern Ohio

November 2014

Contact: gerri@alsaohio.org

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Presentation Objectives

1. Identify the effects of an ALS diagnosis on an individual and his/her caregiver.

Dr. Ken Doka’s Five Phases of Living with Life- threatening Illness, specifically, Responses to Diagnosis of Terminal Illness, and Terminal Phase

Counseling Individuals with Life-Threatening Illness, Springer Publishing, New York, 2009.

What matters to those with mild to severe disability

Impact of patient suffering on caregivers well-being

Anticipatory Mourning

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Presentation Objectives (cont’d)

2. Define how healthcare professionals can enable pALS and their caregivers to adjust and cope with change and loss. See “HELP”

3. To enable healthcare professionals to know when to introduce, at the appropriate time, and comfortably explore the benefits of palliative and hospice care to pALS and caregivers.

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5 Phases of Living with Life-threatening Illness

(Doka, 2009)

1st Pre-Diagnostic Phase 2nd Acute (or Diagnosis) Phase*

3rd Chronic Phase

4th Recovery Phase (partial or full)

5th Terminal Phase*

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5 Phases of Living with a Life-threatening Illness

1st Phase: Pre-Diagnostic

HELP: What were the pALS and family’s past coping patterns? If they were helpful, in getting through past life difficulties, they could be drawn on again at time of uncertainty and diagnosis.

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness

PHYSICAL MANIFESTATIONS

HELP: Validate, normalize, redirect

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

BEHAVIORAL

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

SPIRITUAL

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

ACCEPTANCE of DIAGNOSIS

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

COGNITIVE EFFECTS

-Denial Types or Levels (Weisman, 1972)

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

EMOTIONAL

-Anticipatory Mourning (Rando, 2000)

Perspective ExperienceFocus: Past, Present, Future LossesDoes NOT influence post-death grief

HELP: Acknowledge losses, give it a name, validate the experience, use active

listening.

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

EMOTIONAL

Anticipatory Mourning or Clinical Depression?Worthlessness (preoccupation)

Guilt Anhedonia Psychomotor Retardation Sad or Irritable (varies) (constant)

Fatigue or Changed Sleep Difficulty Concentrating

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

EMOTIONAL

-Anticipatory Mourning

HELP: Use TIGDS to differentiate Anticipatory Mourning from depression. http://hospice.stanford.edu/documents/tigds.pdf

http://med.stanford.edu/hospice/documents/terminally_ill_grief_depression_scale.pdf

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

COGNITIVE IMPAIRMENT

or PSYCHIATRIC DISTURBANCE

-Anxiety

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

COGNITIVE IMPAIRMENT or

PSYCHIATRIC DISTURBANCE (cont’d)

-Depression found in up to 24% of pALS

HELP: Assessment (ADI-12), diagnosis, therapy should be practiced routinely.

-Suicidal Thoughts

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

COGNITIVE IMPAIRMENT or

PSYCH DISTURBANCE (cont’d)

-Hope

HELP: Enable hope; what does pALS look forward to, what is his/her

goal?

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5 Phases of Living with a Life-threatening Illness

2nd Phase: Acute or DiagnosisResponses to Life-threatening Illness (cont’d)

LIFE REASSESSMENT & HEIGHTENED MORTALITY

What Matters Most when Moderate-Severely Disabled

5 Studies . . . . .

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What Matters Most When Mod - Severe Disabled

Study A: Young & McNicoll (1998)13 pALS ~ Advanced Stages ~ Cope Exceptionally Well

Recurrent ThemesPre-Diagnosis Post-Diagnosis

Work RelationshipsRelationshipsLeisure Activities

Leisure Activities Wisdom

Ability to Adapt

HELP: Identify and add strengths to the traditional medical model of care.

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What Matters Most When Mod - Severe Disabled

Study B: Grehl et al (2011)

41 pALS & Caregivers ~ Depression & QoL

QoL via the Munich Scale Satisfaction LevelRelationships or Social Life Most Everyday Life (ie: Leisure) MoreMind (well-being, self esteem) LessBody (capabilities, cope w/ ALS) Least

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What Matters Most When Mod - Severe Disabled

Study C: Edmonds et al (2007)

23 Participants w/ Severe Multiple Sclerosis17 Caregivers ~Interviews on What’s Most Important~

Common ThemesPhysical AbilitiesIndependence

Personal Relationships

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What Matters Most When Mod - Severe Disabled

Study D: Tramonti et al (2012)

40 pALS ~ Correlation of QoL, Functional Status, Mood

Finding: Quality of Life is NOT correlated with functional abilities of pALS.

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What Matters Most When Mod - Severe Disabled

Study E: Roach et al (2009)~55 pALS & 53 C/G~ QoL Over the Course of Illness~

McGill QoL Survey for pALS & C/G (importance listed highest to lowest)

Social SupportsExistential Well-being

Psychological Well-beingPhysical SymptomsPhysical Well-being

Finding: Pre-existing individual differences affect the pALS’ QoL; QoL is similar to pre-diagnosis QoL for pALS.

HELP: Be mindful that if QoL is low at early stages of ALS, the pALS and family will need a lot of attention through

course of the disease.

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5 Phases of Living with a Life-threatening Illness

5th Phase: Terminal Discussions About Death

OPEN COMMUNICATION

HOPE

PATIENT SETS THE TONE

LISTEN MORE THAN TALK

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5 Phases of Living with a Life-threatening Illness

5th Phase: Terminal Decision-Making

END-of-LIFE

ETHICAL ISSUES

ADVANCED DIRECTIVE

HELP: Enabling pALS and family to make plans and informed decisions (focused on what the pALS wants)can have a positive effect both pre- and post-death.

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5 Phases of Living with a Life-threatening Illness

5th Phase: Terminal Decision-Making (cont’d)

HOSPICE ~ Misconceptions & Assumptions

“Hospice is for people on their deathbed.”

“I don’t want to leave my home.”

“How can I afford hospice?”

“I thought hospice is one big agency.”

“Hospice can provide the hours of home health aides I need”

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5 Phases of Living with a Life-threatening Illness

5th Phase: Terminal Decision-Making (cont’d)

HOSPICE ~ Educate & Inform

-When is the right time?

Support Groups

More help is needed

A decline in progression

Eligibility

“Hospice is not a place . . . it’s a concept.”

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5 Phases of Living with a Life-threatening Illness

5th Phase: Terminal Decision-Making (cont’d)

HOSPICE ~ Educate & Inform (cont’d)

-Describe What It’s LikeAffordabilityIncreased support systemWeekly visits from a nurseHospice Team – the ExpertsEquipment and Meds providedHospice comes to you

“Hospice is not a place . . . it’s a concept.”

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5 Phases of Living with a Life-threatening Illness

5th Phase: Terminal Decision-Making (cont’d)

HOSPICE ~ Educate & Inform (cont’d)

-Empower the Ability to Choose Consider hospice agency reputation Hospices registered with NHPCO Know what questions to ask Interview two hospices Palliative care is another option

“Hospice is not a place . . it’s a concept.”

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Impact of patient suffering on caregiver well-being

“ALS Caregiving tends to be an intensive task; primary caregivers spend a median of 11 hours per day caring for patients, even with homecare

assistance.” (Krivackas et al, 1997)

Caregivers of pALS are more negatively impacted (due to ALS disease progression)

than caregivers of dementia patients. (Roach et al, 2009)

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Impact of patient suffering on caregiver well-being

A Study by Boerner et al (2012)

C/G finds meaning . . . . if pALS is supportive, regardless of physical suffering;if pALS is unsupportive, but has high physical suffering.

Therefore, “….patients can actively contribute to the well-being of their caregivers.”

HELP: Enable improved relationship interaction between pALS and C/G to foster reciprocal appreciation and support.

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Impact of patient suffering on caregiver well-being

A Study by Vignola et al (2008)

Caregivers QoL . . . . . .

is affected by anxiety in both diagnosis and follow-up phases; and their satisfaction with life decreases;

is not affected by ALS debility or function;

HELP: Assess and treat anxiety in both pALS and caregivers to enable an improved QoL.

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Impact of patient suffering on caregiver well-being

A Study by Roach et al (2009)

Quality of Life . . . . . .is lower in younger caregivers;is reported higher in male caregivers;is related to the caregivers physical decline over time;is increased for older caregivers – associated with having good social supports.

Closing Remarks

My hope . . . that with this information, you will add to your healthcare professional

“toolbox.”

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Q & A

?? QUESTIONS ??

THANK YOU FOR YOUR ATTENTION

For a complete Reference List: gerri@alsaohio.org

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Resources

TIGDS:Terminally Ill Grief or Depression Scalehttp://med.stanford.edu/hospice/documents/terminally_ill_grief_depression_scale.pdf

ADI-12: ALS Depression Inventoryhttp://www.commondataelements.ninds.nih.gov/Doc/NOC/ALS_Depression_Inventory_12_NOC_Request.pdf

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Resources (cont’d)

McGill Quality of Life Questionnairehttp://www.npcrc.org/files/news/mcgill_quality_of_life.pdf

Satisfaction with Life Scalehttp://www.ppc.sas.upenn.edu/lifesatisfactionscale.pdf

Speilberger’s State Anxiety Trait Inventoryhttp://yogabharati.org/public_download/Yoga_SN_2014/State_Trait_Anxiety_Inventory_for_adults.pdf

Resources (cont’d)

Doka, Kenneth J. Counseling Individuals With Life-Threathening Illness. Springer Publishing Co., LLC: New York, NY 2009.

Choosing A Quality Hospice

http://www.momentsoflife.org/sites/default/files/public/moments/Choosing%20a%20Hospice.pdf

Hospice & Palliative Care Informationwww.nhpco.org

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