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Martha Hayward & Patty Webster
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Martha’s Story
I wish she had talked to both of us
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3
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Diane Sawyer Video
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WANT TO DIE AT HOME.
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ACTUALLY DIE IN A HEALTHCARE FACILITY
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THINK IT’S IMPORTANT TO HAVE END-OF-LIFE
CONVERSATIONS
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HAVE ACTUALLY DONE SO
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Equity Issue
Individuals who are Black or Hispanic are HALF as likely to have had conversations about their own
end-of-life care wishes
Individuals with incomes of less than $40,000/year are HALF as likely to have an ACP
Source: The Conversation Project National Survey (2013, 2018)
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FEEL RELIEF FROM HAVING
THE CONVERSATION
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“Our ultimate goal, after all, is not a good death but a good life to the very end.”
~ Atul Gawande
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The Conversation Continuum
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Conversation Ready Principles1. 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
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Our Tools Conversation Starter Kit (translations available)Starter Kit for Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of DementiaHow to Choose/Be a Health Care ProxyHow to Talk to Your DoctorPediatric Starter Kit for Parents of Seriously Ill Children
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The Conversation Starts with You
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Setting the TableHow it works– Give current answers!– Personal, table, report out
Ground rules
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The Starter Kit: Preparation
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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.”
“Having my sheets untucked around my feet!”“Peaceful, pain-free, with nothing left unsaid.” “In the hospital, with excellent nursing care.”
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21
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When to Have “The Conversation”Early – Coming of Age – 18 & 21
Often – Before a Medical Crisis – 30, 40, 50, 60, 70
Major Life Event – College, Marriage, Children, Divorce, Medicare,
Death in the FamilyMajor TripNewly Diagnosed with a Serious Illness
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How to Start
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Tips from the FieldGive current answersHome is not always feasible. Probe for what’s important.Ask if this person will/can honor your wishesTell more than one personInvite others to share their wishes with youBe wary of “whole enchiladas” and “plug pulling”Beware of family or caregiver “bullying”The opportunity to strengthen relationships – these are very loving conversations and don’t have to be serious
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Leaving in Action
Complete the Starter KitHave the Conversation with a Loved OneAppoint a Healthcare Proxy/AgentBring What Matters to Me concept back to your organization / community
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Get Involved: Community Engagement Resources
Get started– Community organizing guide and resources
(identifying partners and sample work plans)– *Case studies*– Template for tracking progress, suggested
metrics Promote your message
– Sample promotional materials (PSAs, ads) – Social media toolkit
Host an event (planning, publicizing, facilitating, evaluating)
– Invitations and agendas for events– Press release and flyer templates– Slide deck, videos, materials to bring– Evaluation forms
Bonus content
https://theconversationproject.org/get-involved
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Other TCP ResourcesOn TCP website:
Stories, blogs, kits/translations, champions mapOther Resource pages: Faith and Health Care– IHI Open School Course- Basic Skills for
Conversations about End-of-Life Care (free CEUs)– Resources to having culturally/ethnically sensitive
conversationsTCP YouTube ChannelTCP Newsletters
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A Soul Doctor and a Jazz Singer