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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.

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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

kdebartolo@ihi.org

Martha Hayward

The Conversation Project

mhayward@ihi.org

www.theconversationproject.org