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Language Matters inPalliative and End-of-Life Conversations
Sally Okun, RN, MMHS VP Advocacy, Policy & Patient Safety
PatientsLikeMe
2013 Cashdollar LectureUTHSC College of Nursing
November 08, 2013
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Comprehensive, interdisciplinary managementof physical, psychological, social, spiritualand existential needs.
It can be part of the treatment of any personwith a serious or life-threatening medicalcondition for which a person-centeredfamily focused approach, pain and symptomcontrol and compassionate care are needed.
Palliative Care
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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 toshift from cancer to non-cancer
SUPPORT Study results
Hospice Always = Palliative Care
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Study to Understand Prognoses and Preferences forOutcomes and Risks of Treatment
1989 1991 Phase I Descriptiono
described the 9 selected diagnoses, theiroutcomes, and the decision making that mightshape the trajectory
o Selected 5 study locations across USo Identified opportunities to improve decision-making and reduce pain
SUPPORT: Spotlight on Dying
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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
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85 of Americans 45 years and older say they want o A choice of care optionso Individualized pain & symptom controlo Team of professionals to provide care they
chooseo 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 actedupon
Source: Transforming Death in America, June 2001
From the voice of people in 1999
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P e r 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 beneficiarieso Hospice: from 21.6% in 2000 to 42.2% in 2009o 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 careo 31% died receiving the hospice inpatiento 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 carewith 83% reporting they had heard the termshospice 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 withcancer, the elderly and for pain management
Knowing words doesnt insure awareness
15Proprietary & ConfidentialSource: McIlfatrick et al. BMC Palliative Care 2013, 12:34 http://www.biomedcentral.com/1472-684X/12/34
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Personal experienceo with own illnesso 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 Wisheso 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 meano Hospice, palliative care, end of life care,
advance care planning, terminal care, comfortcare, aggressive care, extraordinary measures
o Treat or withhold treatmento Good vs. bad deatho Over vs. under treatment
Documentso 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 toprevious 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 oftenoversimplifies death Perceptions are hard to shift
Perceptions are important
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Advance care planning, palliative andend-of-life care are unfamiliar words, arenot well understood and when peopletalk about these concepts they do notuse these words.
The Issue
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Most people would prefer not to haveconversations about advance careplanning, palliative and end-of-life carein short, most people do not want to talkabout illness, dying, or death.
What are they willing to talk about?Can we find some open doors?
The Challenge
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Listen well to the words and phrasespeople use when telling their story anduse them creatively and effectively toinfuse concepts and themes of advancecare planning, palliative and end-of-lifecare.Let people tell their story
The Objective
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Reframe conversations about advancecare planning, palliative and end-of-lifecare around the language and storiesthat are familiarConversations that are more like their
lived experiences better represent whatmatters to them.
The Opportunity
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Patients like to tell their story learn to listen well ittakes 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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Jot down the first 5 words or phrases thatcome to mind about who and what matter toyou most.
How might you tell someone about them? Can you imagine how youd include them in
a conversation about your own advance careplanning?
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 somedayto give people a chanceto 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.
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BREAK
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Unless health impacts our life most of us arenot 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 wantin their life.
The rest just want our health to not impedethe other things we want to do.
Do we really value health?
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All models are wrong, butsome are useful.
George Edward Pelham Box
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Whats your picture of health look like?
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Trajectories of Illness to Death:Predictable Terminal Phase
Illnesses such ascancer have aprogression thatends in a steadyinexorable declinein function untildeath
Source: Field MJ, Cassel CK (eds), Institute of Medicine. Approaching Death: Improving Care at the End-of-life. Washington,DC: National Academy Press. 1997
Death
Time
Decline:short period of
evident decline
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Trajectories of Illness to Death:Slow with Multiple Acute Crises
Illnesses such as organfailure, metabolic and
neurological diseasesoften have a slowincremental declinepunctuated bymultiple episodes ofacute exacerbations
H e a
l t h S t a t u s
Death Time
Decline:never get back toprevious 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
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Trajectories of Illness to Death:Prolonged Insidious Progression
Illnesses such asdementia, TransIschemic Attacks(TIAs), frailty presentwith a steadyprogressive declineleading to death Death
Time
Decline:prolongeddwindling
H e a
l t h S t a t 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
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The start of PatientsLikeMea story
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Inspired by their brother Stephensbattle with ALS (Lou Gehrigs disease),Ben and Jaime Heywood co-foundedthe company in 2004 with long-timefriend, Jeff Cole.
The co-founders and teamconceptualized and built a health data-sharing platform that could transform theway patients manage their ownconditions, change the way industryconducts research and improve patientcare.
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Patients engage with PLM through a well definedand understood process and evolution
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Step 1:Create/update yourpatient profile andshare it with others
Step 2:Find support from andcompare experienceswith other patients likeyou
Step 3:Learn from aggregatedcommunity Treatmentand Symptom Reports
Step 4:Take your patient profile to your providerappointments for an improved dialogue
Step 5:Play an integral andparticipatory role in yourhealth care
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Patients use PatientsLikeMe to create online health profilesof critical health and disease information
Example MS Patient
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Are you listening well?
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To learn,
listen wellto impressions
voiced by
patients first.Sally Okun