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December 01, 2015

Advance Care Planning & Advanced Illness

Charlie Sabatino

(The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 37, Issue 2.)


The Commission has played an important role in several major advances this past year affecting advance care planning and advanced illness policy and practice.

Policy Change

Top among developments has been the decision by the Centers for Medicare and Medicaid Services (CMS) to establish, for the first time, billing codes that allow physicians and other qualified health professionals to be reimbursed for advance care planning services. The Commission had strongly advocated for this in both legislation and regulation for years, so the new rule is a major victory. The decision affirms advance care planning as a critical component of clinical practice. We have known for years that thoughtful advance care planning discussions between patients and clinicians are vital to ensuring person-centered care. Person-centered care means that medical decisions are based on the individual’s values, beliefs and goals for care that in turn drive the choice of interventions. A Kaiser Family Foundation survey this year also showed that, overall, only 17% of adults surveyed said they had had such discussions with their doctor or another health care professional, even though 89% believe doctors should engage in such counseling.

The Commission’s support for the rule change was bolstered by the ABA’s adoption of a Commission-sponsored resolution at the February 2015 meeting of the ABA House of Delegates. The resolution calls for support of legislation and regulation that promotes access to, and financing of, high-quality, comprehensive long-term supportive services for persons with advanced illness. This is the fastest growing population in our aging society, and their needs have been largely unmet by current health delivery and financing systems. The resolution urges development and implementation of innovations that prioritize person-centered care planning and coordination; home-based supportive services; better access to palliative care and caregiver support; expanded research in delivery practices and standards; greater workforce development; more effective health information technology; and payment mechanisms that support these elements.

Legislative Culture Change

Another remarkable shift central to the Commission’s work has been the growing acceptance by Congressional leaders on both sides of the aisle of the importance of advance care planning and better care for persons with advanced illness. While Congress has yet to enact major legislation on this topic, bipartisan bills for which the Commission has provided technical assistance have been introduced or under development. One key example is The Care Planning Act (S. 1549) introduced by Sen. Mark Warner (D-VA) and Johnny Isakson (R-GA). The bill would create a care planning and coordination benefit under Medicare, as well as an advanced care demonstration project. Congressional hearing and forums have also demonstrated an attitude change that contrasts dramatically with the “death panels” fears that were in circulation only five years ago.

Collaborative Successes

Commission staff continue to collaborate with the Coalition to Transform Advanced Care (C-TAC) toward the goal of ensuring that all people with advanced illness receive high-quality, coordinated, and compassionate care consistent with their personal goals and values. In late 2014, C-TAC released a new book, the Path Forward: A Blueprint for Reforming Advanced Illness Care in America, with one chapter on policy and advocacy co-written by Charlie Sabatino.

The Commission also continues to provide technical assistance to the National POLST Paradigm Task Force and to state groups developing programs modeled on POLST (Physician Orders for Life-Sustaining Treatment). The effort has focused mainly on legislative and regulatory issues that face POLST programs. In the Commission’s home jurisdiction, the District of Columbia, the Commission provided testimony is support of a bill that will authorize the program in D.C. for the first time. The collaborative efforts of many groups seeking to establish and improve POLST programs nationwide have resulted in POLST programs in various stages of development in 45 out of 50 states as of the end of this year.

Educational Progress

Educational efforts on health decisions and advance care planning are ongoing. This year, efforts included presentations at several professional conferences, media technical assistance, and updating of a popular Commission reference, Myths and Facts About Health Care Advance Directives. The Commission is also one of the founding co-sponsors of National Healthcare Decisions Day—April 16 of each year. The goal of the day is to inspire, educate and empower the public and providers to engage in quality advance care planning.

As the Commission moves forward into the next year, we anticipate some exciting developments in both federal and state health policy matters and a greater focus on quality measures for person-centered care, especially with respect to care planning and end-of-life care.

My Health Care Wishes Smartphone App

In its second year on the market, the app was highlighted as one of “20 apps to help provide easier access to legal help” in the April 2015 ABA Journal. It also received coverage in the New York Times New Old Age Blog. The app gives individuals and their family members the ability to store their own and each other’s health care advance directives, key health information, and health care contacts on their Apple or Android smartphones, and to send advance directive documents directly to health care providers by email or fax. The goal is to enable people to have advance directives available whenever and wherever needed, without having to rely on 3rd party cloud-based registries. Learn more at

Tools to help individuals and families engage in advance care planning and manage their advance directives have proliferated in the last few years, so the Commission has regularly updated a handy Health Decisions Resources page on its web to highlight the best resources available to the public and professionals. Several other health decisions technical resources can be found on that web page, too. Visit

Where to Go for Further Information

For the latest on all of the above guardianship activities, see the Commission's Health Care Decision-Making Resources webpage at:

Charlie Sabatino

Charlie Sabatino is Director at the ABA Commission on Law and Aging in Washington, DC.