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Ellen is working to establish a new cultural norm when it comes to end-of-life care: one in which individuals and families talk openly about their values and wishes—particularly with those who will make decisions for them if they can’t make them for themselves.
The New Idea
That most Americans die in a way that’s counter to their wishes is no secret: According to the Centers for Disease Control, 70 percent of people want to die at home and yet 70 percent die in hospitals and institutions. At the root of that disconnect is a cultural problem, rather than a medical one: most people’s wishes for their end-of-life care aren’t known, for the simple reason that conversations about end-of-life are hard conversations, particularly with the people you love the most.
Ellen launched The Conversation Project with a simple goal in mind: to spark a conversation where people live, work, and pray. Through a combination of storytelling, tool development, and network-building among faith communities, companies, and aligned community-based organizations, Ellen is working to raise public awareness around the importance of having the conversation, and to equip people with simple and accessible tools that they can easily use at home.
Ellen began by developing a “Conversation Starter Kit,” in collaboration with a team of medical experts, chaplains, and writers. The easy-to-use toolkit is designed to help people talk about their wishes for end-of-life care. Powering its distribution is a grassroots network comprised of a wide array of organizations and individuals who want to help spark the conversation within their own communities—ranging from clergy, to hospices, to local Chambers of Commerce. Recognizing that each local organization knows its own community best, Ellen and her team support the network with a resource center, event planning support, media outreach, and access to a peer community with whom they can each share learnings and best practices.
A journalist by training and syndicated columnist, Ellen understood that the key to culture change lay in leveraging the media to get people to talk about and think about end-of-life issues more regularly. She is thus working closely with a range of cultural influencers and trusted voices in healthcare to share stories about the decisions they faced, and to help people realize that they aren’t alone. Since its launch in 2012, more than 142 groups in 35 states have jumped on board The Conversation Project, and the Conversation Starter Kit has been downloaded over 130,000 times.
Most people have a story of a good death or a hard death. Through extensive conversation with medical professionals, clergy, and everyday individuals, Ellen saw that the difference between those experiences often lay in whether people have shared their wishes for how they want to live at the end-of-life, and what does and does not matter to them.
Over the last several decades, various attempts have been made by the medical community to improve end-of-life preparedness. In 1991, Congress passed The Patient Self-Determination Act, mandating that hospitals and other healthcare institutions provide information about advance care directives, or living wills, to adult patients. However, the law made no attempt to equip doctors or patients to have that conversation. It is thus frequently done too late, in too much haste, and, too often, a patient's answers to those questions go nowhere.
The result? Today, only 20-30% of Americans report having an advance directive. In Massachusetts, only 17% of people have had these conversations with their doctor. In California, that number is only seven percent. While the last thirty years have seen a dramatic rise in hospice and palliative care, of the estimated 1.5 million patients who received hospice care in 2012, more than 1/3 were served for only 7 days or less - leaving families without adequate time to plan and say goodbye.
Such efforts have failed to make significant inroads largely due to a lack of consumer demand, and a failure to combat the underlying problem—one that is, by its nature, cultural, rather than medical: people don't want to talk about end-of-life. An early proposal in the Affordable Care Act that called on doctors to have the conversation with their patients was met with immediate fear-mongering and push-back over "death panels."
The problem is all the more acute when it comes to talking with the people we love about their wishes. In a survey conducted by The Conversation Project, more than 90% of respondents said it was important to talk about their loved ones' and their own wishes for end-of-life care, yet less than 30% had actually had those conversations. (In reality, that number is likely closer to 20%, as it is widely considered the product of a "halo effect," wherein people give what they consider to be a socially responsible answer.) Instead, we engage in what Ellen calls a "mutual conspiracy of silence": elderly parents don't want to worry their adult children, and children don't want to suggest that their parents may die.
Our failure to have the conversation has proven not only emotionally scarring, but also economically costly: In 2011, approximately 28% of Medicare spending went toward patients' last six months of life. In 2008, Medicare spent $50 billion on doctor and hospital bills during patients' final two months of life, of which an estimated 20-30% of those expenditures may have had no meaningful impact.
Taboos around death and dying are, of course, nothing new. From the outset, however, Ellen recognized that ours was an historic moment, in which talk of end-of-life care was uniquely poised to enter the public fore. Drawn to the issue through her own experience during her mother’s final months, Ellen began by convening a body of experts, including clergy, doctors and leaders in the healthcare industry, and members of the media.
She soon discovered that she was hardly alone. Everyone had a story to tell. Faced their own parents' experiences with end-of-life, a generation of aging Baby Boomers were confronting these issues head-on.
Following the gathering, she and the team met with Don Berwick and Maureen Bisognano of the Institute for Healthcare Improvement. A renowned expert, Don had just been appointed head of the Centers for Medicare and Medicaid. For years, IHI had been focused on improving the healthcare system: improving doctor training and patient safety, driving affordability, and spotlighting promising innovations. Ellen described their vision of a people-centered approach to transforming cultural norms. Don and Maureen asked how they could help. And so a partnership was born, with IHI serving as The Conversation Project's incubator and home.
Ellen understood that success would depend on a three-pronged strategy: first, the project needed to drive public awareness. She and the small, entrepreneurial team understood that people were most likely to change their beliefs – and ultimate their behaviors – when they shared their stories, and discovered others' like theirs. A renowned journalist, she set to work launching a national media campaign, driven by outreach to traditional media, and created an online platform and social media presence through which they could gather, record, and share stories. In its first two years, The Conversation Project was featured in The New York Times, O Magazine, NPR, The Wall Street Journal, and scores of other publications and broadcasts, including a feature on ABC World News with Diane Sawyer. Ellen and her team, along with advisors and aligned experts have written more than a dozen third party editorials, providing the credibility and influence they need to secure public trust and that of the medical community when it comes to talking about end-of-life care.
Ellen knew that she needed only look to the gay rights movement for evidence that culture can change, and quickly. She thought of the impact that popular television shows and character-driven films had made on changing public attitudes toward the gay community. She knew, too, that among depictions of CPR on film and television, two-thirds of all patients walk out of the hospital, while only 10% survive in reality. She hence sought out a way to work with Hollywood. She and the team are now working with The Writer's Guild and other members of the entertainment industry to incorporate The Conversation into film and television storylines, and are working to develop an original and engaging documentary that could be used both in community presentations for use in community presentations and for viewing at home and in theatres. Other partnerships include collaborations with a group of celebrity chefs on an e-cookbook, and emerging work with creative agencies on a future social messaging campaign.
She realized, of course, that changing the conversation would depend on more than raising awareness. Talk about end-of-life is challenging for anyone, and people need tools to make it easier. Together with a group of experts, Ellen and the team developed a Conversation Starter Kit, and made it available for download for free on her website. The Conversation Project team knows that no single kit could ever prepare you for the myriad decisions that come with end-of-life care, depending on the person and the condition. The kit instead sparks a conversation about values: one that doesn’t require a medical degree, or any kind of professional training, and that makes no attempt to steer an individual toward a particular form or approach to care. The Conversation Project made a conscious choice not to drive people toward one particular set of choices or another: Changing the culture means avoiding the landmines that make death and dying so taboo in the first place. Instead, Ellen sought to shed “the most light with the least amount of heat.”
In response to demand, she and the team have gone on to develop a number of other toolkits, including one on how to talk to your doctor or care provider, and another for parents of terminally ill children. In partnership with IHI, the Conversation Project team helped to develop an open school curriculum to help health professionals foster skills in interacting with patients and families, and specific tools through which doctors and nurses can help them to actualize their wishes.
Finally, Ellen is working to create what she calls, “Conversation-Ready Communities.” Rather than rely solely on digital awareness-raising, they have launched a network comprised of community-based organizations that want to spark The Conversation among their local constituencies. Targeting places where people “live, work, and pray,” the TCP team aims to help others lead Conversation Groups, sharing tools and best practices specifically designed for that unique environment, whether within a workplace or particular faith community. In recent months, Ellen has teamed up with faith leaders in Boston from each of the major faith traditions on an initiative they’re calling the Conversation Sabbath: A weekend in which every congregation in the Boston area will hold The Conversation. Scheduled for the fall of 2015, the weekend will serve as a measurable case study through which the team can test how many people believe it’s important have The Conversation, how many people have had it, and the degree to which they are able to close the gap.
Having spent its first year as a project of the Institute for Healthcare Improvement, The Conversation Project is now its own 501c3. It continues to share staff, office space, and other in-kind support through IHI, but operates with a fully independent budget, of roughly $1 million total. Of that, approximately 2/3 is the product of foundation grants, while the rest is the result of speaking fees, workshops, corporate contributions, and private and in-kind contributions.
Begun in 2012, The Conversation Project has had more than 250,000 visitors to its website, of whom more than 130,000 have downloaded the Conversation Starter Kit. To date, 142 organizations from 35 states and towns and cities as far ranging as Winston-Salem, NC; Boulder, CO; and Portland, OR, have pledged to make their communities Conversation-Ready.
Born in Massachusetts, Ellen grew up in a family devoted to two things: family and politics. Politics was her family’s business. The value of service, and the notion that we each have the capacity and responsibility to help repair the world was one that was nurtured throughout her upbringing.
A self-described “recovering journalist,” Ellen spent nearly half a century covering social change as a reporter and columnist. She was one of the first women to write for the op-ed pages, where she became, according to Media Watch, the most widely syndicated progressive columnist in the country. It was in that capacity that she learned to listen deeply, to distill patterns, and to tell stories. She learned to share opinions without lecturing, and found that her role was to give people choice over what they believed, by sharing the information they needed to make informed decisions.
The first female columnist to win the Pulitzer Prize, Ellen spent the bulk of her career covering social change, with a focus on women’s roles, family issues, and bioethics. In the mid-2000s, she took on a new hat: that of grandmother. It was then that she began to notice that the vast majority of civic engagement efforts targeting grandparents focused on a narrow set of issues specific to senior citizens—Medicare, Social Security, prescription drugs, and the like. She, together, with former vice presidential candidate Geraldine Ferraro and a number of influential women in fields ranging from anthropology to history to psychotherapy, launched GrannyVoters, calling on grandparents to think of themselves as a political power, and to vote in the interest of their grandchildren, and future generations.
It was around that time that her mother’s health began to fail. Her mom lost the ability to make decisions for herself and entered a long-term care facility, and Ellen went from being a working mom to a working daughter. Ellen and her mom had always talked about everything, but suddenly, she found herself making decisions on her mother’s behalf that they’d never before discussed. She knew from her mom’s passing comments that if she ever wound up in a vegetative state, she would want to “pull the plug.” Yet Ellen soon found that, in reality, there was no plug to pull.
She was working on a deadline one day when her mother’s long-term doctor called to say that her mom had contracted pneumonia. He asked if she wanted to put her on antibiotics. She froze. She had no idea what her mom would have wanted.
After her mom’s passing, she began talking with others, and realized that everyone felt alone, despite the fact that they everyone had a story. In 2009, she convened a group of clergy, doctors, and journalists, and asked that they each take off their professional hats. They told stories about good deaths and bad deaths, and resolved that they had to make it easier.
Already contemplating retirement, Ellen found herself drawn ever deeper into the idea, and realized that her career as a journalist had left her uniquely prepared to launch The Conversation Project as an encore career: She had a credible voice, a network of influencers steeped in healthcare and social change, and an understanding about how to shift public opinion, and the inner workings of the media world. And so, in 2011, with the help of the Institute for Healthcare Improvement, The Conversation Project was born, going public in 2012.