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2/26/2015
1
The Conversation Project & Conversation Ready
Kate DeBartolo
Martha Hayward
Dallas, TX
March 2015
The Conversation Project
A national public engagement campaign dedicated to assure that everyone’s wishes for end-of-life care are:
Expressed and Respected.
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The Talking Gap
90% 90% 90% 90% of people think it is important to talk about their loved
ones’ and their own wishes for end-of-life care.
27% 27% 27% 27% of people have discussed what they or their family wants
when it comes to end-of-life care.
Source: The Conversation Project National Survey (2013)
The Conversation Continuum
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TCP’s Historical Background
Inspired and led by Pulitzer Prize winning journalist and author, Ellen Goodman
Collaboration with the Institute for Healthcare Improvement (IHI)
National thought leaders urged a new approach: from the outside in
No position on type of care at the end of life
Change in Cultural norm: from not talking to talking
TCP’s Strategy for Creating Cultural Change
Awareness: National media campaign and community engagement events
Accessible: Tools to help people get started
Available: Bringing TCP to people where they work, where they live, and where they pray
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Awareness: Diane Sawyer
Awareness: Death Over Dinner
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Accessible: Our ToolsConversation Starter Kit
How to Talk to Your Doctor Starter Kit
Translations
Pediatric Starter Kit
Learning to Date
Universality of issue
Starter kit is very accessible
Having the conversation makes a major difference in
peoples’ lives
Not every conversation is perfect, need to start…..
Not everyone wants to have the conversation
Major impact on health care providers
Economics and Humanity
It always too early until it is too late!
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Personal Reflection
What has been the experience in your family?
What is the role of your profession in these conversations?
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The Starter Kit: Get Ready
What Matters to Me…
“I want to say goodbye to everyone I love, have one last look
at the ocean, listen to some 90’s music, and go.”
“A tingling sensation of sadness combined with gratitude
and overflowing love for what I leave behind.”
“Paced (and with enough space and comfort so that I can
make it a ‘quality chapter’ in my life.) I want time and help to
finish things.”
“Without suffering and without reproach.”
“Peaceful, pain-free, with nothing left unsaid.”
“In the hospital, with excellent nursing care.”
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The Starter Kit: Get Set
The Starter Kit: Go
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Available: Where People Live, Work, and Pray
Conversation Ready Communities: 215 organizations in 40 states
Conversation Ready Companies: Tufts Health Plan and Dow Chemical bringing TCP to their employees
Conversation Sabbath: an interfaith initiative in Boston engaging many faiths
Why Engage Communities?
Bringing TCP to people where they live, work, and pray – from the outside in
Local agents of change who bring unique perspective and recommendations
Limited resources
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Regional Examples
Hospice of the East Bay, CA
– Using local staff
– Engaging different audiences
Boulder, CO
– Small team with large reach
– Targeted efforts
– Larger CO initiative underway
– Research and metrics focus
– Round 1 and 2 gatherings with post card follow up
The Boulder team
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• SC Bar submitted proclamation for SCHDD
• Op ed templates, articles, presentations
• “Isn’t it time we talk?” brochure by The Carolinas Center for Hospice and End of Life Care, SC Medical Association, SC Bar, SC Hospital Association
• Advance Directives and FAQ on websites
• Attorney-physician pairs on local news stations, call in programs
SC Healthcare Decisions Day (SCHDD)
Professional Examples
AAA– Hosting events
Clergy– Shared sermons and trainings
Clinicians– Conversation Ready
Employers– Staff training and mailings
Finance/Elder Law– Materials to all clients
Funeral– Local convener
Universities– Open School course + student engagement
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Faith-Based Community
• Guest preaching
• Starter Kit workshops
• Area seminaries
• Death Over Dinner
• Coach-the-coaches
• Collaboration with Greater Boston Interfaith Organization
• Conversation Sabbath
• Long lead time for planning
Rev. Rosemary Lloyd
The Community Resource Center
Media and Communications– Press releases, social media strategies
Materials and Tools– State-specific resources
Event Materials– Invitations and agendas for regional events
Community Organizing– How to engage faith organizations
Measurement– Suggested metrics and evaluation plans
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Community Resources
Community Resource Center
Monthly regional calls
– Third Wednesday of each month, 3-4pm ET
– Next call is Wednesday, 3/18
Monthly news scan and call notes
Listserv to ask questions
Community Planning
Aim:
– What are you trying to accomplish by when?
Nature of the Intervention:
– What are you asking people to adopt?
Nature of the Social System:
– How are you accounting for the environment in which you are trying to spread?
Motivation:
– Why would anyone participate?
Foundation:
– Who else has adopted the intervention?
Network Building:
– What is the infrastructure for connection between participants?
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Aim - What are you trying to accomplish by when?
Time and number– Heart of the work
Who do you want to engage in your community?– Back of the envelope
calculation
What do you want to do to engage them? – Awareness vs. action
How will you measure success?
Nature of the Intervention - What are you asking
people to adopt?
Simplify what you are asking of people. – Make it easy to do the right thing
– Understand the tools you want to use
How far do you want people to go?– “just” the conversation?
– Talking to their doctor
– Filling out medical/legal forms?
Simplify your case based on your audience– Individual
– Relationship
– Cultural
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Nature of the Social System - How are you
accounting for the environment?
Boulder, CO vs. Wichita, KS
Target audience
Different approaches for different settings
– Faith vs. Employer
Motivation - Why would anyone participate?
Start with yourselves
Individuals– Early adopters first
Organizations– Get everyone under
the same umbrella
– Stakeholder analysis
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Foundation - Who else has adopted the intervention?
Who are some key leaders or “chief evangelists?”
Who else is working on this?
What organizations can you get on board?
– How do you want to engage them?
Consider balance of the effort
Create space for affinity groups
Who is missing from your list?
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Possible Community PartnersArea Agencies on Aging
Assisted Living
City Employee Retirement System
Community Foundations
Dept. of Public
Health/Mental Health/Behavioral Health
Elected Officials
EMT providers
Estate/Legal entities
(elder law, local bar association…)
Faith-based
organizations, clergy, chaplains
Financial community (e.g., banks, CPA firms,
financial advisors)
Health plans/insurers
Home care/VNA
Home Owners Associations
Homeless shelter
Hospice
Hospitals/Health systems
Local resources: libraries,
Chamber of Commerce, regional employers,
Lion/Rotary/Elks Club…
Media channels (local, state, regional)
Medical Association
Ministerial Association
Nursing homes
Physician office practices/primary care
Prisons
School District – all staff
or PTOs
Senior Advocacy Organizations/Elder
Services (senior center, transportation, meals on
wheels)
Universities and students
VA
Network Building- What is the infrastructure for
connection between participants?
How to interact and share
FACILITIES (2000-plus)
NODES (approx. 75)
*Each Node Chairs 1 Network
*30 to 60 Facilities per Network
IHI and Campaign Leadership
Mentor Hospitals
OngoingCommunication
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What We’re Seeing
Live– Local leaders promoting TCP
– Presentations (invited and hosted)
– Train the trainer
Work– Health care organizations
– General employers
Pray– Shared sermons and materials
– Hosted events at houses of worship
Conversation Ready
A national public engagement campaign dedicated to
assure that everyone’s wishes for end-of-life care are:
Expressed and Respected.
2/26/2015
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Conversation Ready“Unfortunately, the evidence
demonstrates that even if one
completes an advance directive or has
a discussion on the subject with family
and loved ones, it tends to be
separated from the time of dying by
months, years, or even decades. Most
people envision their own death as a
peaceful and an ideally rapid transition.
But with the exception of accidents or
trauma or of a few illnesses that almost
invariably result in death weeks or
months after diagnosis, death comes at
the end of a chronic illness or the frailty
accompanying old age. Few people
really have the opportunity to know
when their death will occur.”
Changing Culture
“The new hope is that we “The new hope is that we “The new hope is that we “The new hope is that we
can change the culture to can change the culture to can change the culture to can change the culture to
treat the patients as they treat the patients as they treat the patients as they treat the patients as they
wish to be treated rather wish to be treated rather wish to be treated rather wish to be treated rather
than treating them than treating them than treating them than treating them
because we canbecause we canbecause we canbecause we can.”.”.”.”
-Billie Billie Billie Billie KesterKesterKesterKester, Reid Hospital, Indiana,
Conversation Ready Health Care
Community Member
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Conversation Ready Principles
1. Engage with our patients and families to understand what matters most to them at the end of life
2. Steward this information as reliably as we do allergy information
3. Respect people’s wishes for care at the end of life by partnering to develop shared goals of care
4. Exemplify this work in our own lives so that we understand the benefits and challenges
5. Connect in a manner that is culturally and individually respectful of each patient Connect
Engage Steward Respect
Exemplify
Engage
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Steward: The allergy analogy
Respect
Similar to Birth Plans
• Patient birth plan is
important and encouraged
• Women are strongly
encouraged to consider
what they want their
delivery to be like
• Birth plan may be altered if
there are medical issues
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Exemplify
Connect: Faith Leader & Community Outreach
Symposium - “Advance Planning for
End of Life: Tools for Faith & Health
Conversations” (January 9, 2014)
Panel - “Final Goodbyes: Death &
Dying Across Faith Traditions” (June 5,
2014)
Advance Care Planning Facilitator
Workshop “Respecting Choices” – “It’s
about the conversation, not the form”
(ongoing)
“Advance Care Planning for Faith
Leaders: Preparing to Care for Those
with Chronic and Terminal Illness”
(October 31, 2014)
- Participant at “Final Goodbyes”
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Examples of Upstream WorkVirginia Mason Medical Center (Washington): Community class” Your Life,
Your Choices”
St Charles (Oregon): Incorporation of Conversation Ready module into
Heart Failure University for newly diagnosed patients
Elder Services of Merrimack Valley (Massachusetts): Training for staff
(ESMV is an Area Agency on Aging) with encouragement to complete
documents and have own conversations before needing to do same work in
community with clients
Care New England (Rhode Island) and KP San Jose (California): referrals
to home care agencies for conversations after hospitalization
Erie County Medical Center (New York): Engagement of community
pastors and elders for “Community Conversations”
Reid (Indiana): Death Over Dinner events in community
Knoxville Academy of Medicine (Tennessee): Elvis-themed “A Little More
Conversation” event
What’s Next?
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Developing Your Action Plan
Change takes place when people decide to
take action.
What action do you want to take?
– What assets do you already have?
– How would you begin to introduce TCP in your
community?
– What other stakeholders would you like to engage?
– What could be done quickly? What will take longer?
Personal Next Steps
Use the Conversation Starter Kit yourself –share with your personal network
Read some of the stories on our website
Follow us on social media for latest updates
Join one of our monthly calls and/or listserv
Take the IHI Open School course
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Resources for you
IHI Open School Course – free CEUs
TCP YouTube channel
TCP website (videos, stories, translations)
Monthly community calls
– Third Wednesday of each month, 3-4pm ET
– Next call is Wednesday, 3/18
Questions
Kate DeBartolo, National Field Manager
The Conversation Project
Martha Hayward
The Conversation Project
www.theconversationproject.org