dr. sally okun 2013 cashdollar dvp presentation

8/14/2019 Dr. Sally Okun 2013 Cashdollar DVP Presentation

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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

3Proprietary & Confidential

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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

18PROPRIETARY &CONFIDENTIAL


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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

23PROPRIETARY &CONFIDENTIAL


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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?

27PROPRIETARY &

CONFIDENTIAL


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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.

Proprietary & Confidential


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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