Building a Movement to Change the Way America Treats Our Seriously Ill The Challenge of Advanced Illness Care Today Most Americans today are living longer and healthier lives than ever before. Yet, at some point, the vast majority will face advanced illness, which occurs when one or more conditions become serious enough that general health and functioning decline, curative treatment begins to lose its effect, and quality of life increasingly becomes the focus of care - a process that continues to the end of life. These people need and want seamless, person-centered and well-coordinated care that helps them live as comfortably and productively as possible. Our health care system, despite its strengths, is ill-equipped to provide such care when people are seriously ill. This is not a problem that can be ignored. Over the next two decades, the number of people over 65 will nearly double to more than 72 million, or one in five Americans. Most people with advanced illness will be in this age group. Without change, they will be at higher risk for unnecessary hospitalizations, unwanted treatment, adverse drug reactions and conflicting medical advice, with resulting higher cost-of-care to families and the nation. It doesn t have to be this way. Our Guiding Principle The Coalition to Transform Advanced Care (C-TAC) is dedicated to the idea that all Americans with advanced illness, especially the sickest and most vulnerable, receive comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values and honors their dignity. We will achieve this goal by empowering consumers, changing the health delivery system, improving public and private policies, and enhancing provider capacity. How C-TAC Drives Change As a large and growing alliance of over 130 national organizations and leaders, C-TAC creates, supports and promotes the use of proven solutions to drive positive change in advanced illness care. We are a catalyst and voice for this expanding movement across America. C-TAC is a non-profit, non-partisan 501(c) 3 organization based in Washington, D.C. Members include: patient and consumer groups; health care professionals and providers; private sector stakeholders; faith-based organizations; health care payers and others. Our Priorities Based on our guiding principles, we work with our members and others across four integrated focus areas: policy and advocacy; public engagement; clinical and community models; and professional engagement. Among our priority programs are:
Health Delivery System and Community Innovation! Advanced Care Project (ACP) In partnership with the AHIP Foundation, C-TAC, a number of health systems and others have identified and compared best practice clinical models drawn from leading programs across the U.S. and produced five guiding principles for an effective advanced care model. These principles are a useful guide to improve quality, support choice and increase affordability of care. We are promoting these results to hospitals, health systems, physician groups and health plans, as well as nursing homes, hospices, and community organizations to provide highquality care for patients and families living with advanced illness. Payment models and quality measurement are also being developed to enable successful implementation. Contact Jon Broyles at jbroyles@thectac.org.! Community Action Our alliance of faith organizations, health systems and other stakeholders is piloting community-based models to connect community services with clinical care to improve outcomes for people with advanced illness, reduce caregiver burdens and reinforce community support. The initial pilot is in Alameda County, CA. Training and workshops for clergy and others are part of this, and a toolkit for community outreach is being developed. Additional pilots are being started in Detroit and Washington, D.C. To learn more, contact Jon Broyles at jbroyles@thectac.org. These initiatives are designed to improve person- and family-centered decision-making regarding advanced illness. To support this, a study with The Advisory Board Company was undertaken to establish a baseline understanding of how care and treatment decisions among clinicians, patients and families are made, and how informed and shared decision-making can be improved. Public Engagement! Changing the Narrative To achieve necessary reform, we need a new way to talk about serious illness, a new way to tell the story. To improve outcomes among families, clinicians and others, we must change the narrative to empower action and solutions. A New Narrative for Advanced Illness Care was produced to address this need. To learn more, contact Meagan Johnston at mjohnston@thectac.org. 2
! CareJourney Patients, their families and caregivers crave information about serious illness, whenever it occurs. The health system is often difficult to navigate, and people are forced to search a confusing and overwhelming array of sources for what they need. In response, we developed CareJourney a consumer-based website to help people understand their diagnoses and how to plan for their care and caregiving medical, financial and spiritual. Visit www.carejourney.org for more information. Policy Development and Advocacy! Policy Agenda Our Advanced Illness Policy Review identified federal policy measures introduced and considered over the past decade. The next step was a comprehensive Policy Agenda to help guide federal and state advocacy initiatives. It includes delivery system reform, preferencedriven care, caregiver and consumer support, and professional engagement. Based on this, we established a legislative team of C-TAC members to advance federal and state legislative opportunities. Now we are adding a Regulatory Task Force to monitor, analyze, and catalyze opportunities in the regulatory arena. We work closely in a bipartisan fashion with Members of Congress and staff, Administration officials and key stakeholders, including the Senate Finance Committee s Chronic Care Workgroup, to advance our immediate and long-term priorities. Encouragingly, there is increased bipartisan interest in improving advanced illness care.! CMS Decision to Reimburse for Advance Care Planning C-TAC supported and commended the Administration for funding codes (payments) that will allow clinicians to conduct comprehensive, voluntary advance care planning discussions with patients and their families regarding care goals and preferences. This is a critical step to ensure that all individuals, especially those with advanced illness, receive care that aligns with their goals and preferences and honors their dignity. Advance care planning is an important cornerstone in a broader, comprehensive approach that also focuses on care management and coordination, interfaces with home and communitybased programs, and promotes treatment and palliative care delivered by an interdisciplinary team. We work closely with the Administration and others on further regulatory change. The Project on Advanced Care and Health Policy 3
The Petrie-Flom Center at Harvard Law School and C-TAC have established The Project on Advanced Care and Health Policy. The Project will address barriers to reform and propose policy solutions that promote development of successful programs and models at state and federal levels. The Project is led by I. Glenn Cohen, Faculty Director of the Petrie-Flom Center and Professor at Harvard Law School and Mark Sterling, Chief Strategy Officer at C-TAC. For more information on C-TAC s advocacy initiatives, contact Marian Grant at mgrant@thectac.org and/or Andrew MacPherson at amacpherson@thectac.org. Progress Across the Movement! Performance Measurement A full array of measures is needed to gauge national progress in improving advanced illness care. This includes quality, access, timeliness, utilization and person-centeredness of the care provided, and encompasses patient and family satisfaction. C-TAC is collaborating with the National Quality Forum, Planetree and others to establish and promulgate these standards. For further information, contact David E. Longnecker, MD at del@thectac.org. In addition, a consumer baseline knowledge, perceptions and reported behaviors -- is needed to assess progress and effectiveness in public engagement. We are seeking funding to conduct this research.! Institute of Medicine Report In 2014, the Institute of Medicine (now the National Academy of Medicine) released Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, a critical examination of how we care for the sickest and most vulnerable among us. Victor Dzau, MD, President of the NAM, will report at our 2016 National Summit (see below) on progress in implementing the report s recommendations. We coordinate with the NAM in support of this important document. To access the report, go to www.iom.edu.! A Blueprint for Transforming Advanced Illness Care in America C-TAC s book, A Roadmap for Success: Transforming Advanced Illness Care in America, outlines the key issues, challenges, and solutions needed for reform; builds on the shared mission in the national movement; identifies action steps for achieving high-quality, advanced illness care; and, issues a call to action. It is directed to the professional community: clinicians, health executives, and companies, policy analysts, policy makers, faith leaders, academics and other thought leaders. Authors of A Roadmap for Success are experts from C-TAC s member organizations. Copies are available as a free online download and on Amazon for $8. For additional information, contact Meagan Johnston at mjohnston@thectac.org. 4
! 2016 National Summit on Advanced Illness Care This third Summit will be held on September 20-21, 2016 at the National Academy of Sciences building in Washington, D.C. This big picture gathering will focus on: clinical and community models; shared and informed decision-making (patients, families and clinical teams); caregiving; policy and advocacy; technology; public engagement; metrics and measurement; scaling for success and more. Co-sponsors are: Leonard Schaeffer, AARP, Aspire Health, American Heart Association, American Society of Clinical Oncology, American Hospital Association, Association of American Medical Colleges, CFAR, The John A. Hartford Foundation and the National Academy of Medicine, Join us to plan and help lead the movement. To register, visit www.ctacsummit.org/register. For further information, contact Jackie Buente at jbuente@thectac.org. Follow Up with C-TAC C-TAC s Board of Directors is co-chaired by Tom Koutsoumpas and Bill Novelli. Jon Broyles is Executive Director. Funding is provided by member organizations, foundations and government grants. To join C-TAC, visit www.thectac.org. For information, contact Meagan Johnston at mjohnston@thectac.org. May 2016 5