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December 01, 2014

2014 Review: Advance Care Planning & Advanced Illness

(Note: The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 36, Issue 2.)

Advanced care planning and the care of persons with advanced, progressive conditions has been a major priority in Commission work for several years. This article takes a look as Commission accomplishment during 2014 in areas of policy, research, product development, and education.

Policy Accomplishments

The Commission was a principal co-sponsor of the ABA resolution, adopted in February 2014, urging Congress to enact legislation that requires that any days an individual spends in the hospital under “outpatient observation status” be counted as inpatient days with respect to satisfying the three-day inpatient hospital stay requirement for Medicare coverage of skilled nursing facility care after hospitalization. Anyone who goes to the hospital can be placed on observation status so that doctors can determine what’s wrong and determine whether hospitalization is needed. Observation patients may receive diagnostic tests, medications, treatments, and other services just like an in-patient, so they may not know they are on observation status. If their doctor then orders a period of skilled nursing home care after discharge, they discover that Medicare will not cover their care, because they were never officially admitted to the hospital for three days. The use of observation status by hospitals has increased substantially in recent years, so many more patients and their families are being negatively affected by it.

The practice was unsuccessfully challenged in court by the Center for Medicare Advocacy, so the best hope for a solution has been a bill that the ABA supports, called the Improving Access to Medicare Coverage Act of 2013, which would require observation days to be counted toward the three-day qualifying hospital stay required for nursing home coverage. The bill had substantial support with 161 co-sponsors in the House and 28 co-sponsors in the Senate at the end of 2014 but was not taken up on the floor of either body. The Commission will continue to support the effort when the bill is reintroduced in 2015. In the meantime, three states enacted legislation requiring hospitals to give patients clear notice when they are placed on observation status. The state laws don’t solve the problem but they at least make to practice visible.

The ABA, through the Commission, has continued to support legislation that would strengthen the federal Patient Self-Determination Act, such as, Personalize Your Care Act (HR 1173), introduced by Rep. Earl Blumenauer (D-OR). Commission staff also played a role as expert reviewer for the major new report released by the Institute of Medicine, National Academy of Sciences, titled Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. The report included major findings and recommendation addressing advance care planning and caregiver issues, along with payment and delivery reform challenges for the care of persons with advanced illness as they near the end of life.

Advanced Illness Care

Commission staff continue to collaborate on an individual level 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 has also lead ABA support for broadening supportive services to persons in the community who would otherwise have to be placed in nursing homes. A key 2014 bill targeting that goal was the Community Integration Act of 2014, introduced by Sen. Tom Harkin (D-IA). The bill would have amended the Social Security Act to require state Medicaid plans to give an individual with disabilities needing an institutional level of care the choice and opportunity to receive such care in a home and community-based setting. The bill did not progress in Congress but, nevertheless, represents a policy goal that will only continue to rise in importance – that of ensuring the availability of effective home and community-based care resources when people need them and in the place they wish to receive them.

The Commission also provided technical assistance on the Care Planning Act (S 1439), introduced by Senators Mark Warner (D-VA) and Johnny Isakson (R-GA). The bill would create a new Medicare and Medicaid benefit for advanced illness planning services by interdisciplinary teams and authorize a 5-year advanced illness care coordination services demo for patients in need of assistance with two or more activities of daily living.

In late 2014, the Institute of Medicine commenced a new Committee on Family Caregiving of Older Adults, with an ABA Commission staff appointed as a member of the Commission. The Committee will work intensively through 2015 with a report expected in 2016.

My Health Care Wishes Smartphone App

In April, the Commission released its new My Health Care Wishes smartphone app in connection with National Healthcare Decisions Day. 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 Bluetooth connectivity. The goal is to enable people to have advance directives available whenever and wherever needed, without having to rely on 3rd party cloud-based advance directive registries.

Initial publicity and distribution plans included an ABA National Healthcare Decisions Day Radio News Release, featuring ABA President Bill Silkenat, and a media report picked up by several publications, including the New York Times New Old Age Blog. The app is a particularly useful resource for lawyers to recommend to their clients when they prepare advance directives for their clients.

Physician Orders for Life-Sustaining Treatment (POLST)

The Commission has served as the legislative/legal consultant to the National POLST paradigm Task Force which is made up of representatives from states that have established POLST programs in conformity with endorsement standards adopted by the Task Force. See The number of states that have adopted POLST authorizing legislation reached 23 this year, with 15 of those states and one sub-state program (in Wisconsin) having programs endorsed by the National POLST Paradigm Task Force. The majority of remaining states have POLST programs in various stages of development. The Commission provides technical advice not only to the Task Force but also to individual states working through legislative and regulatory issues related to PLST. Staff succeeded in completing the research and writing for a POLST State Legislative Guide with several collaborators, released in mid-2014, along with a comparative state chart of POLST legislation. Noteworthy this year was the fact that the Institute of Medicine’s major report and recommendations, Dying in America, recommended the use of POLST for patients with advanced care. The IOM report will likely increase state interest in implementing POLST.

National Health Decisions Day

The ABA, through the Commission, is one of the original co-sponsors of National Health Decisions Day (April 16). This year the Commission tied the release of My Health Care Wishes smartphone application to the day and also produced a radio news release and an op-ed piece on advance care planning by ABA President Jim Silkenat. Both promoted the need for all adults to engage in advanced care planning. The radio news release was picked up by an estimated 1,969 radio stations and heard by an estimated audience of 8.4 million listeners. The op-ed was picked up by 18 newspapers, including international outlets.

Educational Efforts

Educational efforts on health decisions and advance care planning are ongoing. This year, they included 10 professional conference presentations; publication of the article “Advance Care Planning Tools That Educate, Engage, and Empower,” in the Public Policy & Aging Report; and continued service as a consultant to the AARP Caregiving Resource Center. The Commission publication, Consumer Tool Kit for Health Care Advance Planning, continues to be one of the most visited pages on the Commission website. ■