Year in Review : Year 5 of The Conversation Project

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1 2016 Year in Review : Year 5 of The Conversation Project The Conversation Project (TCP) is a public engagement campaign with a goal that is both simple and transformative: to have every person s wishes for end-of-life care expressed and respected. Too many people die in a manner they would not choose, and too many of their loved ones are left feeling guilty, depressed, and uncertain about whether they have done the right thing. TCP is dedicated to changing that reality. The Conversation Project began when Ellen Goodman and a group of concerned media, clergy, and medical professionals gathered to share stories of good deaths and hard deaths within their own circle of loved ones. They realized that the difference between the two experiences often hinged on whether or not they had the conversation. Our Strategy ONE: Raise public awareness of the need for timely conversations about our wishes regarding end-of-life care TWO: Provide the tools to help everyone have The Conversation THREE: Bring The Conversation to people where they live, work, pray, and gather to create Conversation Ready Communities Over several months, a vision emerged for a grassroots public campaign. In order to make this vision a reality, The Conversation Project launched in collaboration with the Institute for Healthcare Improvement (IHI) in September By sparking cultural change at the kitchen table, The Conversation Project hopes it will become easier for people to express their end-of-life wishes in advance and have them respected at the end.

2 ONE: Raise public awareness of the need for timely conversations about our wishes regarding end-of-life care. People are moved by what they read, hear, and see. The more often people hear TCP s mission and message, the more likely they are to consider having The Conversation. During the past year, TCP has become a trusted source for journalists and a voice to the public through the media regarding the importance of talking about end-of-life care. As a result, TCP has generated significant media exposure. Conversation Project Talking Matters Blogs Conversation Project in the News 50 blog posts 20,000+ total blog readers What I like about The Conversation Project s guide to starting this discussion is that they provide a format to begin the conversation with your loved one and if the disease has progressed too far, they provide a guide to have a conversation with your family. The guide is free, easy to use, and will provide much more comfort than avoiding one of the most important conversations you can have this year. David Pride for The Huffington Post Before I saw my elderly heart patient for his next visit, I came across the website of The Conversation Project So at my next meeting with my patient, rather than beginning the discussion around his code status, I asked what mattered most to him. Dr. Ravi Parikh for The Washington Post National Healthcare Decisions Day The Conversation Project has committed to lead National Healthcare Decisions Day to promote advance care planning conversations across the country. Over 2 million individuals reached through public events, social media, and employer participation. Social Media Facebook: 6,100 likes Twitter: 3,474 follows #TalkingMatters National Quality Forum Information The Conversation Project s public engagement work was featured in Strategies for Change A Collaborative Journey to Transform Advanced Illness Care report by National Quality Forum

3 TWO: Provide the tools to help everyone have The Conversation The Conversation Project offers the tools, guidance, and resources needed to begin talking with loved ones about their wishes and preferences, before a medical crisis and not in the intensive care unit. The Conversation Starter Kit is featured on the organization s website (). This downloadable guide is designed to be used by families, or by individuals, as a way to help them think about and communicate their wishes regarding end-of-life care. The Starter Kit, along with TCP s other tools, has been the heart of the nonprofit s mission, helping tens of thousands of families across the country and beyond, to open up and have the courage and confidence to have The Conversation. 540,000+ Total unique website visitors 9 Translations: Korean, Russian, Mandarin, Spanish, French, Hebrew, Vietnamese Soon to be released: Japanese and Portugal 300,000 Conversation Starter Kit 3,300 Alzheimer s Starter Kit 1,935 Community Resource Guide 90% of Americans say it s important to discuss their own and their loved ones wishes for end-of-life care. 30% of Americans have actually discussed their wishes for end-of-life care. AAFP Relationship The Conversation Project has partnered with the American Academy of Family Physicians to promote conversations about end-of-life care to AAFP members. In addition to pushing TCP content and resources to 55 AAFP chapters, TCP Executive Director Harriet Warshaw presented at AAFP s Family Medicine Experience event in September NAS 854 Pediatric Starter Kit 3,911 How To Talk To Your Doctor Kit The Conversation Project presented at the following events hosted by the National Academies of Science, Engineering and Medicine (formerly the Institute of Medicine): Integrating the Patient and Caregiver Voice into Serious Illness Care: A Workshop (May 2016) and Assessing Progress in End-of-Life and Serious Illness Care (December 2016).

4 THREE: Bring the Conversation to people where they live, work, pray, and gather to create Conversation Ready Communities The Conversation Project has created a wide array of relationships across the country to help spread its work and foster cultural change. These relationships range from community collaborations, to inter-organizational cooperation, to private business initiatives, to local, state, and national government involvement and impact. States Active 45 Partner Organizations 427 Community Champions 714 Partnership Highlights: Fidelity is partnering with The Conversation Project to encourage employees, retirees, and clients to have open and honest end-of-life care discussions with family and friends at home, before a health crisis occurs, and the discussion takes place in the intensive care unit. Massachusetts Coalition on Serious Illness Care - Organized by The Conversation Project, Blue Cross Blue Shield of Massachusetts, and Ariadne Labs, the Massachusetts Coalition for Serious Illness Care is working to ensure that health care for everyone in Massachusetts is in accordance with their goals, values, and preferences at all stages of life and in all steps of their care. Berkman Family Foundation - The Conversation Project was the recipient of a generous grant from the Berkman Family Foundation to test strategies that had the potential to accelerate the spread of our work across the state of Florida. In the past year we have established significant connections with local leaders, creating a strong foundation for future work across Florida. Floridians who visited The Conversation Project website took advantage of our available resources. We reached over 2,250 individuals and leaders and have more events scheduled for % of all website visitors from Florida downloaded our Conversation Starter Kit PDF or viewed it online. John A. Hartford Foundation Grant - With support from the John A. Hartford Foundation over the next three years, TCP is accelerating our spread strategy by working intensely with local leadership and willing partners in select communities across the nation. TCP is currently working closely with communities in Connecticut, New Mexico, and Texas. Over the next three years we plan to identify additional communities to spread our grassroots work. Speaking Engagement Highlights National Academies of Medicine Engineering Science: Assessing Progress in End-of-Life and Serious Illness Care (Washington, DC) 05/23/2016 Fidelity Practice Management Institute (Boston, MA) 08/23/2016 National Institute of Nursing Research (Bethesda, MD) 09/13/ BCBSA Western Leadership Conference (Portland, OR) 09/13/2016 AAFP Family Medicine Experience (Orlando, FL) 09/22/2016 Post-Acute Care Center for Research Evolution Summit (Nashville, TN) 10/06/2016 National Academies of Medicine Engineering Science: Integrating the Patient and Caregiver Voice into Serious Illness Care (Washington, DC) 12/25/2016

5 Conversation Ready Work The Conversation Project and the Institute for Healthcare Improvement launched Conversation Ready in 2012 with the aim of developing reliable processes for health care organizations to engage patients in conversations about their wishes for end-of-life care, steward that information, and then respect those wishes at the appropriate time. Collaboratives: These intensive programs are designed for organizations committed to achieving sustainable change within the field of end-of-life care. Through shared learning, teams from a variety of organizations work with each other and Conversation Project and IHI faculty to rapidly test and implement changes that lead to lasting improvement. Virtual Programs: Speak(easy) Howard End-of-Life Collaborative - The Horizon Foundation launched Speak(easy) Howard, a campaign that aims to change the way people in Howard County, MD a suburban community of Baltimore, talk about and plan for the health care they want to receive in the future. The focus of this Collaborative is to increase the number of individuals residing in Howard County who have end-of-life care conversations, increase the number of individuals with a documented health care agent, and impact institutions where end-of-life care wishes are honored so that actions to respect these wishes are a more consistent standard of care. Massachusetts End-of- Life Collaborative (Grant from Gordon and Betty Moore Foundation)- In the fall of 2016, we recruited 37 diverse health care organizations from across Massachusetts to participate in the Conversation Ready Massachusetts Collaborative. This Collaborative is a part of a statewide project aimed to increase the number of end-of-life wishes that are documented and respected. The Conversation Project team is also engaging with faith communities and professional organizations from financial services firms to law firms within Massachusetts. This project is generously funded by The Gordon and Betty Moore Foundation. Is Your Organization Conversation Ready? IHI Expedition End-of-Life Conversations- Preparing Your Team for Success & CMS Reimbursement