Ms. DeBartolo oversees The Conversation Project, IHI’s public engagement initiative to help people share their wishes for care through the end of life.
In addition to leading The Conversation Project team and operations, Ms. DeBartolo manages and cultivates relationships with national and state-level organizations that help engage the general public in end-of-life care initiatives.
Since starting in July 2007, she has been involved in the 5 Million Lives Campaign, Improvement Map, Project JOINTS, and many of IHI’s other large-scale initiatives. Prior to joining IHI, Ms. DeBartolo worked as a grant analyst at The California Endowment.
She is a graduate of Wellesley College and currently lives in Washington DC with her husband and son.
Why and how did you get involved this work?
As a staff member of The Institute for Healthcare Improvement, I joined The Conversation Project team in 2013 and originally started working on our community engagement efforts. We’d recently started up the project with a website, conversation guides, and an emphasis on engaging the media – but were pleasantly surprised to hear from many community leaders who wanted to bring this work to their schools, organizations, workplaces, and places of worship. What started as a handful of folks turned into hundreds and then thousands of community champions around the world. We are so grateful to them for bringing The Conversation Project’s message and resources to their communities.
From The Conversation Project’s perspective, what is the most important part of aging successfully?
I believe that when we understand and embrace our own mortality, we lead more fulfilling lives. Acceptance of death helps us cut through distractions and allows us to focus on the people and things that matter most to us. And as we age, planning ahead and talking with the people who are most important to us about what matters most to us in our care can help us clarify what ‘success’ might look like at the end of our lives. ‘The Conversation’ is about thinking through and sharing our values so that others know what makes life worth living to us. Doing this early and often can let us focus on living a good life through the end.
If you could show a young person their life thirty years into the future, what would you hope that they would discover that might change their lives today?
I’d actually flip this question. None of us knows what tomorrow will bring, let alone thirty years into the future. COVID-19 has made this even more apparent. My hope would be that, regardless of age, we all make sure those who are important to us know we care about them, share favorite stories and memories now, and let small things roll off our back…tomorrow is never promised. It always seems too soon until it’s too late. And with that, it’s important to not put off choosing a health care proxy and talking with them about our values and the kind of care we want today, or in the future, should something happen that we cannot make care decisions for ourselves.
What are you most passionate about these days in this sector?
I’m particularly drawn to the effect this work has on strengthening relationships. Not only are we trying to serve the person whose death may be imminent (whose wishes we want to know), but we are supporting their survivors. These conversations won’t eliminate grief but we can work to make that grief less complex – and leave relationships intact and strengthened. I am energized by the stories of thanks we hear.
Additionally, I’m excited to see a cultural shift underway. More individuals and organizations are re-framing life and death in a way that is positive, with an increasing focus about how to live well through the end of our lives.
Finally, we love to see the intergenerational and cross-cultural aspects of this work and the emphasis on love, honor, and caring — to destigmatize aging. Whether that is faith-based ministries of mixed ages focusing on completing advance directives together, or things like this documentary.
What, in your opinion, is the most common roadblock a person faces when planning for their lives ahead? What are some ways one can overcome these blockages?
I think it’s a hybrid of 1) not wanting to upset others by bringing up a seemingly sad topic, and 2) thinking “we’ll cross that bridge when we get to it.” Re-framing can help. If we start talking about this earlier and more often, it won’t feel like some big scary unknown. Many bite-size conversations over time might be easier than one formal sit-down. If you see a movie or read a story that hits a nerve – share it with someone. One popular conversation starter is: “I was thinking about what happened to ____, and it made me realize_____”
After the year we’ve all had, what are The Conversation Project’s goals in doing this work in 2021?
One of our main goals for the year is to continue reaching and partnering with groups who have been marginalized and historically mistreated by the US health care system. We want to provide support and resources to help everyone share what matters most to them in their health care. We know inequities exist at the end of life; our goal is to fight those inequities by ensuring that all voices are heard and that care decisions are made with those voices in mind. To that end, we’ve just released updated our conversation guides to improve their inclusivity and accessibility. This will remain a focus of our future partnerships and outreach in 2021.