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

2
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

3
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.

4
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*

5
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.

6
2nd Phase: Acute or Diagnosis
Responses to Life-threatening Illness
PHYSICAL MANIFESTATIONS
HELP: Validate, normalize, redirect

7
Responses to Life-threatening Illness (cont’d)
BEHAVIORAL

8
SPIRITUAL

9
ACCEPTANCE of DIAGNOSIS

10
COGNITIVE EFFECTS
-Denial Types or Levels (Weisman, 1972)

11
EMOTIONAL
-Anticipatory Mourning (Rando, 2000)
Perspective Experience
Focus: Past, Present, Future Losses
Does NOT influence post-death grief
HELP: Acknowledge losses, give it a name,
validate the experience, use active listening.

12
EMOTIONAL
Anticipatory Mourning or Clinical Depression?
Worthlessness  (preoccupation)
Guilt  
Anhedonia 
Psychomotor Retardation 
Sad or Irritable (varies)   (constant)
Fatigue or Changed Sleep  
Difficulty Concentrating 

13
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/termi
nally_ill_grief_depression_scale.pdf

14
COGNITIVE IMPAIRMENT
or PSYCHIATRIC DISTURBANCE
-Anxiety

15
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

16
COGNITIVE IMPAIRMENT or
PSYCH DISTURBANCE (cont’d)
-Hope
HELP: Enable hope; what does pALS
look forward to, what is his/her goal?

17
LIFE REASSESSMENT & HEIGHTENED MORTALITY
What Matters Most when Moderate-Severely Disabled
5 Studies . . . . .

18
What Matters Most When Mod - Severe Disabled
Study A: Young & McNicoll (1998)
13 pALS ~ Advanced Stages ~ Cope Exceptionally Well
Recurrent Themes
Pre-Diagnosis Post-Diagnosis
Work Relationships
Relationships Leisure Activities
Leisure Activities Wisdom
Ability to Adapt
HELP: Identify and add
strengths to the traditional medical model of care.

19
Study B: Grehl et al (2011)
41 pALS & Caregivers ~ Depression & QoL
QoL via the Munich Scale Satisfaction Level
Relationships or Social Life Most
Everyday Life (ie: Leisure) More
Mind (well-being, self esteem) Less
Body (capabilities, cope w/ ALS) Least

20
Study C: Edmonds et al (2007)
23 Participants w/ Severe Multiple Sclerosis
17 Caregivers ~Interviews on What’s Most Important~
Common Themes
Physical Abilities
Independence
Personal Relationships

21
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.

22
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 Supports
Existential Well-being
Psychological Well-being
Physical Symptoms
Physical 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.

23
5th Phase: Terminal
Discussions About Death
OPEN COMMUNICATION
HOPE
PATIENT SETS THE TONE
LISTEN MORE THAN TALK

24
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.

25
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”

26
5th Phase: Terminal
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.”

27
5th Phase: Terminal
HOSPICE ~ Educate & Inform (cont’d)
-Describe What It’s Like
Affordability
Increased support system
Weekly visits from a nurse
Hospice Team – the Experts
Equipment and Meds provided
Hospice comes to you
“Hospice is not a place . . . it’s a concept.”

28
5th Phase: Terminal
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.”

Impact of patient suffering on caregiver well-being
29
“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)

30
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.

31
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.

32
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.”
33

Q & A
?? QUESTIONS ??
THANK YOU FOR YOUR ATTENTION
For a complete Reference List:
gerri@alsaohio.org
34

Resources
35
TIGDS:Terminally Ill Grief or Depression Scale
http://med.stanford.edu/hospice/documents/terminally_
ill_grief_depression_scale.pdf
ADI-12: ALS Depression Inventory
http://www.commondataelements.ninds.nih.go
v/Doc/NOC/ALS_Depression_Inventory_12_N
OC_Request.pdf

Resources (cont’d)
36
McGill Quality of Life Questionnaire
http://www.npcrc.org/files/news/mcgill_quality
_of_life.pdf
Satisfaction with Life Scale
http://www.ppc.sas.upenn.edu/lifesatisfaction
scale.pdf
Speilberger’s State Anxiety Trait Inventory
http://yogabharati.org/public_download/Yoga_SN_20
14/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/file
s/public/moments/Choosing%20a%20Hospic
e.pdf
Hospice & Palliative Care Information
www.nhpco.org
37

Presentation 205 sagan living with change, dx to death

Recommended

Recommended

More Related Content

What's hot

What's hot (20)

Viewers also liked

Viewers also liked (20)

Similar to Presentation 205 sagan living with change, dx to death

Similar to Presentation 205 sagan living with change, dx to death (20)

More from The ALS Association

More from The ALS Association (19)

Recently uploaded

Recently uploaded (20)

Presentation 205 sagan living with change, dx to death