Language Matters in

Palliative and End-of-Life Conversations

Sally Okun, RN, MMHS
VP Advocacy, Policy & Patient Safety
PatientsLikeMe
2013 Cashdollar Lecture
UTHSC College of Nursing
November 08, 2013
Comprehensive, interdisciplinary management
of physical, psychological, social, spiritual
and existential needs.
It can be part of the treatment of any person
with a serious or life-threatening medical
condition for which a person-centered,
family focused approach, pain and symptom
control and compassionate care are needed.
Palliative Care
Way back machine
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1974 first hospice opens in U.S.
1982 Congress passed provision for
Medicare Hospice Benefit establishing a
reimbursement structure
1986 Benefit made permanent part of
Social Security Act
1992 Profile of hospice patient begins to
shift from cancer to non-cancer
SUPPORT Study results
Hospice Always = Palliative Care
Study to Understand Prognoses and Preferences for
Outcomes and Risks of Treatment
1989 1991 Phase I Description
o described the 9 selected diagnoses, their
outcomes, and the decision making that might
shape the trajectory
o Selected 5 study locations across US
o Identified opportunities to improve decision-
making and reduce pain
SUPPORT: Spotlight on Dying
1992 1994 Phase II Intervention
Specially trained SUPPORT nurses
Prognostic information shared
Preferences and planning for future
contingencies discussed
Intervention and control data blinded until
completed in June 1994
Intervention did not improve any of the five
targeted issues
SUPPORT: Spotlight on Dying
85% of Americans 45 years and older say they want
o A choice of care options
o Individualized pain & symptom control
o Team of professionals to provide care they
choose
o Emotional & spiritual support for themselves and
those they love.
83% of these same Americans want
o Someone to make sure their wishes are known and acted
upon

Source: Transforming Death in America, June 2001
From the voice of people in 1999
Source: McCarLhy and LeaLherman, erformance SnapshoLs, 2006. www.cmwf.org/snapshoLs
Family Concerns About Quality of Care at EoL for
Adult Relatives Who Died of a Chronic Illness in 2000
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18
4
29
70
43
16
32
56
32 32
44
52
19
20
50
0
20
40
60
80
100
Inadequate help
for patient's
emotional
distress
Inadequate help
for patient's pain
Patient not
always treated
with respect
Inadequate
family
information*
Home with hospice care Home with home care
Nursing home Hospital
Data: Study of Care at the Last Place of Care (Teno, J.M. et al. 2004. JAMA 291:8893).
Note: Percentage results shown represent a subset of nine aspects of care measured in the study.
*Information about what to expect while patient was dying.
Last place
of care:
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53
47
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54
44
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0
20
40
60
80
100
P
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c
e
n
t
1992 2001 2003 2005 2006
Cancer
Non-Cancer
A Decade of Change:
Changing Profile of Hospice Population
Source: National Hospice & Palliative Care Organization Hospice Facts Sheet, 2007
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Its not for lack of trying to get it right
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Familiar themes
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850,000 Medicare beneficiaries
o Hospice: from 21.6% in 2000 to 42.2% in 2009
o ICU: from 24.3% to 29.2%
o of dying seniors using hospice care increased to.
Of those referred to hospice,
o 28.4 percent died within three days of care
o 31% died receiving the hospice inpatient
o 40% of referrals came after an ICU stay
A trend toward more aggressive care?
Had there been previously stated preferences?
Source: JAMA. 2013;309(5):470-477. doi:10.1001/jama.2012.207624.
Place of death from 2000 - 2009
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3557 patients surveyed about palliative care
with 83% reporting they had heard the terms
hospice and palliative care
56% claimed low knowledge
19% had no understanding of the concept
Older respondents more familiar with words
Most say palliative care is for people with
cancer, the elderly and for pain management

Knowing words doesnt insure awareness
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Source: McIlfatrick et al. BMC Palliative Care 2013, 12:34 http://www.biomedcentral.com/1472-684X/12/34
Personal experience
o with own illness
o the illness and/or death of someone close
Individuals current health status
How can communities help?
o Healthy Shelbys End-of-Life initiative
! 20% of adults admitted to Shelby hospitals have an
advance directive.
! 35,000 employees have been trained using Five Wishes
o Community awareness can work LaCrosse WI now
has 96% of all adults have an advance plan
What influences awareness?
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Conceptual confusion what do terms mean
o Hospice, palliative care, end of life care,
advance care planning, terminal care, comfort
care, aggressive care, extraordinary measures
o Treat or withhold treatment
o Good vs. bad death
o Over vs. under treatment
Documents
o Living wills, POLST, Advance Directive, Power of
Attorney, Durable Power of Attorney
Lets look at the language issues
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Hypothetical situations very vulnerable to
previous perceptions and misconceptions
Cultural, ethnic and spiritual norms influence
attitudes
There is nothing more we can do is akin to
abandonment
Depiction of death and dying in media often
oversimplifies death
Perceptions are hard to shift
Perceptions are important
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PROPRIETARY &
CONFIDENTIAL
Advance care planning, palliative and
end-of-life care are unfamiliar words, are
not well understood and when people
talk about these concepts they do not
use these words.
The Issue
Most people would prefer not to have
conversations about advance care
planning, palliative and end-of-life care
in short, most people do not want to talk
about illness, dying, or death.

What are they willing to talk about?
Can we find some open doors?
The Challenge
Listen well to the words and phrases
people use when telling their story and
use them creatively and effectively to
infuse concepts and themes of advance
care planning, palliative and end-of-life
care.
Let people tell their story

The Objective
Reframe conversations about advance
care planning, palliative and end-of-life
care around the language and stories
that are familiar
Conversations that are more like their
lived experiences better represent what
matters to them.
The Opportunity
Patients like to tell their story learn to listen well it
takes more than your ears
Whats on your mind? Whats keeping you up?
Look for openings that allow exploration
o I dont want to be stuck in the ER again for 6 hours.
o I called doctors office to tell them we need hospital
bed but no one has called back.
o Im getting tired of all these drugs.
o My neighbor had hospice and as soon as they got
started he died Im a little suspicious.
Seek to understand whats on their mind and what
matters most

Kitchen Table Conversations
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PROPRIETARY &
CONFIDENTIAL
Jot down the first 5 words or phrases that
come to mind about who and what matter to
you most.
How might you tell someone about them?
Can you imagine how youd include them in
a conversation about your own advance care
planning?
Take a moment - what matters to you?
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Perhaps it would be a good idea,
fantastic as it sounds,
to muffle every telephone, halt every motor,
and stop all activity someday
to give people a chance
to ponder a few minutes on what it is all about,
why they are living and what they really want.


James Truslow Adams 1878 - 1949
mat
.
ters v.
BREAK
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Unless health impacts our life most of us are
not that concerned about it.
We just want and expect it to work in the
background.
There are relatively few people that see their
healthiness as an enabler of things they want
in their life.
The rest just want our health to not impede
the other things we want to do.
Do we really value health?
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PROPRIETARY &
CONFIDENTIAL
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All models are wrong, but
some are useful.

George Edward Pelham Box
Whats your picture of health look like?
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Trajectories of Illness to Death:
Predictable Terminal Phase
Illnesses such as
cancer have a
progression that
ends in a steady
inexorable decline
in function until
death
Source: Field MJ, Cassel CK (eds), Institute of Medicine. Approaching Death: Improving Care at the End-of-life. Washington,
DC: National Academy Press. 1997
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Death
Time
Decline:
short period of
evident decline
Trajectories of Illness to Death:
Slow with Multiple Acute Crises
Illnesses such as organ
failure, metabolic and
neurological diseases
often have a slow
incremental decline
punctuated by
multiple episodes of
acute exacerbations
H
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l
t
h

S
t
a
t
u
s

Death
Time
Decline:
never get back to
previous baseline
Source: Field MJ, Cassel CK (eds), Institute of Medicine. Approaching Death: Improving Care at the End-of-life. Washington,
DC: National Academy Press. 1997
Trajectories of Illness to Death:
Prolonged Insidious Progression
Illnesses such as
dementia, Trans
Ischemic Attacks
(TIAs), frailty present
with a steady
progressive decline
leading to death
Death
Time
Decline:
prolonged
dwindling
H
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t
h

S
t
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u
s

Source: Field MJ, Cassel CK (eds), Institute of Medicine. Approaching Death: Improving Care at the End-of-life. Washington,
DC: National Academy Press. 1997
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Life or death its just so complicated
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From Palliative Care to PatientsLikeMe
The start of PatientsLikeMea story
42

Inspired by their brother Stephens
battle with ALS (Lou Gehrigs disease),
Ben and Jaime Heywood co-founded
the company in 2004 with long-time
friend, Jeff Cole.

The co-founders and team
conceptualized and built a health data-
sharing platform that could transform the
way patients manage their own
conditions, change the way industry
conducts research and improve patient
care.
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Measurement Matters
8C8lL1A8? & CCnlluLn1lAL 43
pauenLs daLa lnslghLs
10+ Patient reported survey
instruments
237 labs
2 million forum posts
16+ million structured data
points
220,000+ Patients
1,800+ Diseases
Disease areas of focus
Multiple Sclerosis
Fibromyalgia
Major Depressive Disorder
Generalized Anxiety Disorder
Chronic Fatigue Syndrome
Dozens of client engagements
35 peer-reviewed papers
Impact on multiple Phase IV
Trials
Patients engage with PLM through a well defined
and understood process and evolution
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Step 1:
Create/update your
patient profile and
share it with others
Step 2:
Find support from and
compare experiences
with other patients like
you
Step 3:
Learn from aggregated
community Treatment
and Symptom Reports
Step 4:
Take your patient profile to your provider
appointments for an improved dialogue
Step 5:
Play an integral and
participatory role in your
health care
A36,-. ,-:3:,B,-. CDC4,
Patient Experience
PatientsLikeMe Data Fields Patient Reporters Stakeholders Data Utilization
Care
Management
(self & provider)
Access &
Reimbursement
Share Decision
Making
CER, PCOR,
HEOR
Industry
Regulators
Payers/Plans
Researchers
Providers
Patients
Conditions
Age
Gender
Race
Ethnicity
Location
Payer type
Active Safety
Surveillance
Diagnostic Journey
Symptoms
Primary / Secondary
Hospitalizations
Comorbids
Treatments
Effectiveness
Dates of Therapy
Indication for Use
Adherence History
Side Effects
Stop Reasons
Advice / Tips
Related Data
Labs, Tests, BMI
Free Text Narrative
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Patients use PatientsLikeMe to create online health profiles
of critical health and disease information
Example MS Patient
november 8, 2013 8C8lL1A8? & CCnlluLn1lAL 46
Are you listening well?
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To learn,
listen well
to impressions
voiced by
patients first.

Sally Okun