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December 01, 2017

Health Decisions and Advanced Illness

(The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 39, Issue 2.)

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

Regulatory Redux on Nursing Home Arbitration Clauses

The Commission, in collaboration with ABA Governmental Affairs, has continued to push for a regulatory ban on the use of mandatory arbitration clauses in nursing home contracts while the position of the Centers for Medicare and Medicaid Services (CMS) has swung from one extreme to the other in the past year. In September 2016, CMS issued final regulatory requirements for long-term care facilities, including a provision that the Commission and other advocates supported a ban on mandatory, pre-dispute arbitration clauses in nursing home contracts. The CMS rule expressly banned these provisions in nursing home admissions. Previously, the requirements were silent on such provisions. This major victory for residents’ rights was immediately challenged in court by the nursing home industry. While the case was pending, a new administration took office and CMS announced a proposal to rescind the rule banning mandatory arbitration and replace it with a rule that would do just the opposite, i.e., permit nursing homes to require residents to agree to pre-dispute arbitration clauses as a condition of admission to the facility. In response, the Commission, through ABA Government Affairs, has redoubled its effort to prohibit the use of these provisions. Currently, the ball is in CMS’s court to issue a new final or proposed rule.

Legislative Hopefulness

While the opportunities for bipartisanship are rarer than ever in Congress, there has been progress in the area of advance care planning for those with serious illness. The primary example is a bill that has been strongly supported by the ABA: The Patient Choice and Quality Care Act of 2017, intro- duced by Senators Warner (D-VA), Isaakson (R-GA) and others in the Senate (S. 1334) and by Rep. Blume- nauer (D-OR) and Rep. Roe (R-TN) in the House (H.R. 2797) in June 2017. This bill would direct CMS to create and test a new advanced illness care and management model that would enable eligible individuals with a serious, chronic, progressive or advanced illness to voluntarily engage in a team-based planning process designed to align the care a patient receives with his or her goals of care, values, and preferences. Among its other provisions, it would establish an Advisory Council to guide the Secretary on issues of advanced and terminal illness; facilitate the development of quality measures for advance care planning; and strengthen the documentation of advance directives and portable treatment orders; and, upon discharge, require providers to send documentation to the individual’s primary care provider and any facility to which the individual is transferred. A handful of other bills that the Commission tracks addressing palliative care and advance planning also promote bipartisan collaboration and offer hope for progress in 2018.

Partnering with Others

Commission staff continues 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). As of the end of 2017, almost half the states have programs “endorsed” by the National POLST Paradigm Task Force, and almost all other states have developing programs or programs that are similar to POLST. The work of the Task Force in setting standards and providing technical assistance and education continues to grow in importance.

Educational Progress

National Health Decisions Day (NHDD). In May,  the Commission co-sponsored a briefing on Capitol Hill in recognition of the 10th anniversary of NHDD. Organized in partnership with the National Hospice and Palliative Care Organization, the PEW Charitable Trusts, and the Conversation Project,
the briefing fea- tured a panel of expert speakers and appearances by
Senator Mark Warner (D-VA) and Representative Earl Blumenauer (D-OR). Both lawmakers spoke eloquently about the importance of advance care planning.

National Alzheimer’s and Dementia Resource Center. The Commission continued a second year of consultation on legal issues related to people with dementia for the RTI National Alzheimer’s and Dementia Resource Center. The result has been the production of several educational publications by RTI targeted both to individuals who live alone and suffer from Alzheimer’s disease and the people who are their caregivers.

The Commission’s other educational efforts on health decisions are ongoing and have included presentations at several professional conferences and
webinars; media technical assistance; and updates of legislative tracking data on advance directive laws posted on the Commis- sion’s website. 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 also can be found on that web page.

Health Decisions Research

The Commission recently completed a 2-year research project funded by the Retirement Research Foundation examining how health care decisions are made in criti- cal care settings for patients who lack capacity and have nothing in writing naming a health care surrogate. The project was a collaboration with the Society for Hospi- tal Medicine (SHM) and the Society for Critical Care Medicine (SCCM), with consultation support from the American Bar Foundation. More information is on the Commission website.

As the health care decisions project described in the previous paragraph was winding down, a new research effort began at the end of 2017, funded by the John A. Hartford Foundation and the Borchard Center for Law and Aging. Collaborating with the American Academy of Hospice and Palliative Medicine and partners from the University of California at San Francisco and the UCSF/UC Hastings Consortium on Law, Science & Health Policy, the project will convene an expert, inter-disciplinary roundtable of medical and legal experts in 2018 to identify and disseminate best practices for lawyer-physician collaboration in the process of advance care planning for clients and patients.

Where to Go for Further Information

For the latest Commission work by the Commission, see the Commission's Health Care Decision-Making Resources web page.