The Challenge of Advanced Illness Care Today
Building the Movement…
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.
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 140 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 the integrated areas of policy advocacy, clinical and community models, public outreach and support for the entire movement. Our priority programs are:
Ø Advanced Care Model
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 an effective advanced care model 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. Payment models and quality measurement are also being developed to enable successful implementation.
To accelerate this process, we have launched an affiliate non-profit 501(c)3 organization, C-TAC Innovations, with two arms:
· Advance care planning implementation through a long-term relationship with Respecting Choices, a comprehensive, evidence-based program in use in over 130 medical centers and health systems in the U.S. and abroad (now at Gundersen Health System).
· Promoting and implementing advanced illness care models, now underway with a number of partners, including a health system, a health plan and a provider of end-of-life care.
Contact Jon Broyles at for more information.
Ø Community Action
Our alliance of faith organizations, health systems and other stakeholders is piloting community-based models, connecting 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, Baltimore and Washington, D.C. To learn more, contact Sheila Snoddy at .
Ø Policy and Advocacy
We utilize a comprehensive Policy Agenda to help guide federal and state advocacy initiatives. It includes delivery system reform, preference-driven care, caregiver and consumer support, and professional engagement. Based on this, we coordinate a legislative team and a regulatory task force of C-TAC members to advance federal and state legislative and regulatory opportunities.
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.There is substantial bipartisan interest in improving advanced illness care.
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 begin 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 community-based 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
The Petrie-Flom Center at Harvard Law School and C-TAC have established The Project on Advanced Care and Health Policy to address barriers to reform and propose policy solutions that promote development of successful programs and models at state and federal levels.
For more information on C-TAC’s policy initiatives, contact Marian Grant at and/or Andrew MacPherson at
Progress Across the Movement
Ø Measuring Progress and Performance
A shared measurement system is needed across the movement to gauge and report on 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 many others to establish these standards. Contact David E. Longnecker, MD at .
Ø National Academy of Medicine Report
In 2014, the National Academy of Medicine (formerly Institute of Medicine) released Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,. We coordinate with the NAM to support and implement the recommendations of this important document. To access the report, go to www.iom.edu.
Ø A Blueprint for Transforming Advanced Illness Care in America
C-TAC’s book, A Roadmap for Success: Transforming Advanced Illness Care in America, outlines 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. Authors of this book are experts from C-TAC’s member organizations. Copies are available as a free online download and on Amazon. Contact Meagan Johnston at .
Ø 2016 National Summit on Advanced Illness Care
This third C-TAC Summit was held in September, 2016 at the National Academy of Sciences building in Washington, D.C. This big picture gathering focused on: clinical and community models; shared and informed decision-making (patients, families and clinical teams); caregiving; policy and advocacy; technology; public engagement; measurement; scaling for success and more. Co-sponsors were: 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. For a summary of the National Summit click here.
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 .
October 2016
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