Every year around November and the Thanksgiving holiday season, Disruptive Women in Health Care offers posts that remind us to take time to pause and think, not only about the delicious things we are thankful for, but to reflect on the tough questions we all face, as individuals and as part of families. Issues that deal with advanced illness, dying and death, and end-of-life preferences.
I was very fortunate, this year, to speak with many experts in these areas. I had a chance to catch up with one of the true pioneers and am delighted to share the highlights of our conversation.
Bill Novelli, a recognized leader in social change, former CEO of AARP, co-founder and former President of Porter Novelli, one of the world’s largest PR firms, and a past EVP of CARE, the world’s largest private relief and development organization, is now a professor in the McDonough School of Business at Georgetown University. He teaches in the MBA program and has created and leads the Global Social Enterprise Initiative at the School.
But my interview with this visionary Man of the Month focused primarily on his role as Co-Chair of the Coalition to Transform Advanced Care, or C-TAC, a national organization dedicated to reforming advanced illness care by empowering consumers, changing the health care delivery system, improving public policies and enhancing provider capacity.
As Bill explained, C-TAC’s vision is that “all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values and honors their dignity.”
What is Advanced Illness?
Here is how C-TAC conceptualizes, defines and explains the continuum. The following is taken directly from C-TAC’s website:
Advanced Illness occurs when one or more conditions become serious enough that general health and functioning decline, and treatments begin to lose their impact. This is a process that continues to the end of life.
During advanced illness, patients and their caregivers often are not asked what care they want and not given the help to make good decisions. Instead they must navigate a maze of care settings and information with little support.
People already burdened with advanced illness should not have to work so hard to receive the quality, coordinated care they need.
We are working across the continuum to ensure that the right care is provided at the right time and place, to empower patients and their families to get the care that they want, honors their dignity, and to avoid unproductive medical interventions:
Healthy People: Help adults communicate their preferences early—before medical emergencies or serious illness occurs.
People with Manageable Conditions: Inform, empower and support patients for what can happen over the course of illness, providing them with access to all relevant health information and care team members.
People with Serious Conditions that Limit Daily Activities: Support and equip medical professionals to deliver the seamless care their patients want, regardless of setting .
People who are Hospice eligible: Ensure that patients’, families’, and caregivers’ concerns and needs are respected and addressed.
C-TAC’s Mission is to “transform advanced illness care by empowering consumers, changing the healthcare delivery system, improving public and private policies, and enhancing provider capacity.”
Today’s Boomers are Both the Impetus for and Drivers of Change
In Bill’s opinion, “Now is the time. Now is the time to fix this.” Why is that? I asked. Why now? “We can fix this mess we are in because of this moment in time—today’s Boomers, they are a feisty bunch who won’t stand for business as usual.” He explained how he and his C-TAC partners and members are working to help people understand their options and demand change.
Consider the 4 Basic Interventions C-TAC is working on, as only Bill can explain:
- Public Engagement: People are put through the ringer—we want to help them understand their options and demand change;
- Professionals: Clinicians are trained to “cure death” and if they can’t, they turn you over to hospice;
- Best Practices: Here’s the big question you must ask, and answer, when seeking big social change: what works? We are curating models that work; and
- Policy Advocacy: We are building a bipartisan coalition on the Hill, to facilitate change. This is neither a Republican nor a Democratic issue. It is a human issue. When it comes to advanced illness, to death and dying, everyone has a personal story—that, Bill told me, is the secret sauce.
Much of the work takes place in C-TAC Working Groups. I am proud to let you know (no surprise here I would like to point out), that one of our Disruptive Women, the very engaging Alex Drane, President and Co-Founder of Eliza Corporation, is not only a major player in C-TAC, but serves as Co-Chair of C-TAC’s Public Engagement Workgroup.
Here’s what Alex had to say about C-TAC and her groundbreaking work in End-Of-Life issues:
“C-TAC’s mission is perfectly aligned with our obsession—helping people live the happiest, healthiest life possible at every point on the care continuum. For over a decade, Eliza Corp. has used its technology platform to proactively engage people in conversations about their health—conversations that touch on topics that aren’t always easy. Over those ten years we’ve had millions of conversations with people about the things that matter to them the most—and it is that data-driven knowledge, combined with our own personal experience that led us to launch Engage With Grace, a non-profit movement aimed at helping people better understand, communicate, and have honored their end of life preferences. There is no better way to build on that growing effort than to ferociously support C-TAC.”
Bill and Disruptive Women share Alex’s enormous enthusiasm for advancing these issues, especially this time of year. With the growing momentum that exists in and around Capitol Hill on these issues (even Members of Congress do not get a pass on mortality), the time is certainly now. As Bill mentioned, today’s Boomers are a feisty bunch. I know I don’t want to get in their way!
In all seriousness, when I asked Bill, “Why C-TAC?” he told me this: “Robin, I have a personal goal to make significant contributions to solving major social problems. And C-TAC is a big step in that direction.”
And that, along with everything else Bill Novelli has accomplished throughout his many years of service is why Disruptive Women is proud to call him our November 2012 Man of the Month.
Best wishes for a bountiful 2012 Thanksgiving holiday season to all our Disruptive friends—men, women, children and pets. May it be filled with health, happiness, and those you hold dear—whether in person or in cherished memory.
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To learn more about the Coalition to Transform Advanced Care, please visit advancedcarecoalition.org.
To read Alex Drane’s November 2011 Disruptive Women post on Things We Are Grateful For This Year, where she shares the story behind and the power within Engage With Grace, please take a look at Disruptive Women in Health Care’s e-book on End of Life (PDF).
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