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December 01, 2016

Advanced Illness & Long-Term Care

Charlie Sabatino

(The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 38, 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: Regulatory Requirements for Long-Term Care Facilities

The Commission played an active role in advocating for changes in the federal regulatory requirements for long-term care facilities that will prohibit the use of mandatory, pre-dispute arbitration provisions in nursing home admissions contracts. The proposed rule by the Centers for Medicare and Medicaid Services (CMS) would have allowed such provisions that met certain basic standards. But in September 2016, CMS released a final rule that expressly bans pre-dispute arbitration provisions in nursing home admissions. This was a major victory for residents’ rights advocates.

However, the battle will continue because the nursing home industry promptly filed suit to challenge the legality of the regulation under the Federal Arbitration Act. The likely duration of the litigation is always hard to predict, but the Commission and other advocates remain optimistic for a positive outcome.

The nursing home industry has always argued that arbitration offers a simpler, swifter and less expensive alternative to litigation, without the headaches and delays of court proceedings. Yet, data on that claim is lacking, because arbitrations are confidential and there is no database that records their outcomes. New York Times reporters undertook a yearlong investigation of nursing home arbitration proceedings, examining the records from more than 25,000 arbitrations between 2010 and 2014. They also interviewed hundreds of lawyers, arbitrators, plaintiffs and judges in 35 states. They found that arbitration proceedings bore little resemblance to the due process rules of court. Arbitrations are generally conducted in the offices of lawyers who represent the companies accused of wrongdoing. More seriously, the Times found many troubling examples where issues of abuse, potential neglect, and even premature death never made it into the public light because they were blocked from court.

Legislative Culture Change

The Commission’s continues to support the legislative dialog that has continued to grow on both sides of the aisle on the importance of advance care planning and person- and family-centered care for persons with advanced illness. While Congress has yet to enact major legislation on this topic, seven important bills reflected a growing interest in addressing the challenge of advanced illness and caregiving:

  • The Palliative Care and Hospice Education and Training Act (S. 2748/H.R. 3119)
  • Personalize Your Care Act 2.0 (H.R. 5555)
  • Compassionate Care Act (S. 2961)
  • Medicare Choices Empowerment and Protection Act (S. 2297/H.R. 4059)
  • Care Planning Act (S. 1549)
  • Removing Barriers to Person-Centered Care (S. 3096)
  • RAISE Family Caregivers Act (S. 1719/H.R. 3099)

An example of the direction we support in these efforts above 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. The year ahead will likely see the reintroduction of each of these bills, and despite the political uncertainty of the next administration, they each offer an opportunity for consensus and real progress.

Collaboration Works!

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. 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 Commission testified in support of a District of Columbia bill successfully enacted to establish POLST in D.C. (referred to as Medical Orders for Scope of Treatment or MOST in D.C.). Implementation steps began in 2016.

As of the end of 2016, 19 states have programs “endorsed” by the National POLST Paradigm Task Force, and 25 states have developing programs, and 4 states that have programs that are considered non-conforming by the Task Force. See POLST programs have been established or are under development in almost every state in the nation as of the end of 2016, so the work of the Task Force in setting standards, and providing technical assistance and education has grown in importance.

Educational Progress

The Commission’s 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 legislative tracking data on advance directive laws posted of on the Commission website. Commission staff also collaborated with the expert consultation on legal issues related to people with the RTI National Alzheimer’s and Dementia Resource Center in the production of several of their educational publications targeted to individuals with or working with Alzheimer’s disease and other dementias.

One especially relevant web resource regularly updated by the Commission is our Health Decisions Resources page. It highlights the best resources available to the public and professionals on the subject of advance care planning. Several other health decisions technical resources can be found on that web page, too. Visit

Shining a Light on Family Caregiving

The National Academy of Medicine (formerly Institute of Medicine) established a Committee on Family Caregiving of Older Adults in 2015 to which the this author as Commission director was invited to be a member. The Committee issued its report in September 2016, titled Families Caring for an Aging America. This timely report examines what is known about the millions of Americans who are providing care and support to an older adult-a parent, spouse, friend, or neighbor-who needs help because of a limitation in their physical, mental, or cognitive functioning. The report calls for a transformation in the policies and practices affecting the role of families in the support and care of older adults, stating that today’s emphasis on person-centered care needs to evolve into a focus on person- and family-centered care. The report recommends, among other steps, that the Secretary of Health and Human Services create and implement a National Family Caregiver Strategy. The full report is available at:

Where to Go for Further Information

For the latest Commission work, see the Commission’s Health Care Decision-Making Resources webpage at:




Charlie Sabatino