	Background

		PSDA, Advance Directives, and Advance Care Planning

As amended, the PSDA requires Medicare and Medicaid funded  hospitals, nursing homes, hospices, HHAs, and managed care plans— including MA and Medicaid health maintenance organizations—to  maintain written policies and procedures related to advance directives. The most  common forms of advance directives are living wills and health care  powers of attorney. During the last 6 months of life, many individuals receive care from one or  more covered providers, including hospitals and nursing homes, and  having an advance directive that specifies an individual’s treatment  preferences to covered providers in preparation for difficult medical  decisions that may arise at the end of life may be useful. The accreditation  organization subsequently recommends to CMS certification of providers  meeting such standards. CMS Oversees Covered Providers’ Implementation of the Advance Directive Requirement by Providing Guidance and Monitoring Implementation

		CMS Provides Guidance to Help Covered Providers Implement the Advance Directive Requirement to Maintain Written Policies and Procedures

CMS develops and disseminates guidance through operations manuals,  memoranda, or model documents to five of the six covered provider  types—hospitals, nursing homes, HHAs, hospices, and MA plans—to  inform these providers of the requirement to maintain written policies and  procedures about advance directives and to describe how the agency will  monitor providers’ implementation. As a  result, CMS does not issue guidance to Medicaid managed care plans. CMS relies on states to provide guidance  to Medicaid managed care plans—the sixth provider type—because  states are responsible for administering contracts with these plans. CMS Monitors Covered Providers’ Implementation of the Advance Directive Requirement

CMS’s activities to monitor covered providers’ implementation of the  advance directive requirement vary across the six covered provider types  and include periodic surveys, contract reviews, and the collection of  certain related data. CMS enters into agreements with state survey  agencies to conduct most surveys. Specifically, CMS reviews MA and Medicaid managed care plan contract  provisions addressing compliance with applicable requirements, including  the advance directive requirement. For Medicaid managed care plans, CMS officials reported that CMS staff  review contracts between the plan and individual states prior to  implementation of a new plan contract or when revisions are made to an  existing approved contract to ensure that the contract addresses  provisions related to advance directives. Approaches Used to Inform Individuals about Advance Directives Vary by Provider Type, but Providers Face Similar Challenges

Providers use various approaches to inform individuals about their right to  have an advance directive, either as part of the admission or the  enrollment process depending on the type of covered provider, according  to CMS and stakeholder officials, and the limited amount of information  found in the literature about certain types of providers. The challenges to informing individuals about  advance directives include discomfort talking about end-of-life issues,  confusion about which staff should have the discussions with individuals,  and lack of staff time to have the discussions. In addition to the challenges with informing individuals about advance  directives, providers face similar challenges documenting this information,  such as errors in individuals’ medical records and challenges related to  access or updates to advance directives, according to the literature and  stakeholder officials. Providers may better address challenges to inform individuals about  advance directives and document them by using leading practices,  according to the literature and stakeholders. Many Adults Have Advance Directives, but the Prevalence Varies by Provider Type, Demographics, and Over Time

Many adults in the United States have advance directives. In 2013, about  47 percent of adults over the age of 40 had an advance directive,  according to IOM’s report Dying in America. The prevalence of individuals with advance directives varies by the type  of provider that individuals are served by—hospitals, nursing homes,  HHAs, and hospices—according to the literature. For three of these four  provider types (hospice, nursing homes, and HHAs), a 2011 National  Center for Health Statistics report found that 88 percent of discharged  hospice patients in 2007 had advance directives, compared to 65 percent  of nursing home patients in 2004, and 28 percent of HHA patients in  2007. 1.) 2.) Older individuals were  more likely to have advance directives than younger individuals. In addition to this study, 36 studies found  variations in the prevalence of advance directives by age, race, income,  education, or gender. 3.) Agency Comments

We requested comments on a draft of this product from HHS. HHS  provided technical comments, which we incorporated as appropriate.
Why GAO Did This Study

Advance directives, such as living wills or health care powers of attorney, specify—consistent with applicable state law—how individuals want medical decisions to be made for them should they become unable to communicate their wishes. Many individuals receive medical care from Medicare and Medicaid funded providers during the last 6 months of life, and may benefit from having advance directives that specify treatment preferences. According to IOM, advance directives are most effective when part of a comprehensive approach to end-of-life care called advanced care planning.
GAO was asked to review information related to advance directives. This report examines (1) how CMS oversees providers' implementation of the PSDA requirement; (2) what is known about the approaches providers use and challenges they face to inform individuals about advance directives; and (3) what is known about the prevalence of advance directives and how it varies across provider types and individuals' demographic characteristics. To do this work, GAO reviewed CMS documents and survey data reported by state survey agencies into CMS's Certification and Survey Provider Enhanced Reporting system about covered providers' implementation of the PSDA requirement. GAO also conducted a literature review of peer reviewed articles and federal government reports. In addition, GAO interviewed CMS officials and stakeholders representing providers and individuals likely to benefit from advance directives.

What GAO Found

The Centers for Medicare & Medicaid Services (CMS) oversees providers' implementation of the advance directive requirement in the Patient Self Determination Act (PSDA) to maintain written policies and procedures to inform individuals about advance directives, and document information about individuals' advance directives in the medical record by providing guidance and monitoring covered providers. Covered providers include hospitals, nursing homes, home health agencies (HHAs), hospices, and Medicare Advantage (MA) plans that receive Medicare and Medicaid payments. CMS, an agency within the Department of Health and Human Services (HHS), provides operations manuals, memoranda, and model documents to these providers to inform them about the advance directive requirement and describe how the agency will monitor providers' implementation. Because individual states are responsible for administering contracts with and providing guidance to Medicaid managed care plans, also specified in the PSDA, CMS ensures that the contracts include the advance directive requirement, but does not issue guidance to these plans. To monitor providers' implementation of the advance directive requirement, CMS primarily relies on other entities. CMS enters into agreements with state survey agencies to periodically survey and report data, which CMS collects, on deficiencies related to advance directives for hospitals, nursing homes, HHAs, and hospices. CMS also relies on accrediting organizations to survey providers that participate in the Medicare program through accreditation and subsequently make recommendations to CMS regarding providers' participation in Medicare. In addition, CMS reported reviewing MA and Medicaid managed care plans' contracts to determine that they include the advance directive requirement.
Approaches used to inform individuals about advanced directives vary by type of provider, but providers face similar challenges, according to stakeholders interviewed and literature GAO reviewed. For example, hospitals, nursing homes, HHAs, and hospices inform individuals about advance directives during the admission process, while MA plans and Medicaid managed care plans inform individuals during enrollment. Challenges in informing individuals about advance directives include discomfort talking about end-of-life issues and lack of staff time for such discussions. Providers may address these challenges by using leading practices, such as patient education or population specific materials.
Many adults have advance directives, but estimated prevalence varies by provider type and an individual's demographic characteristics. In 2013, 47 percent of adults over the age of 40 had an advance directive, according to the Institute of Medicine (IOM) report, Dying in America . However, the prevalence of individuals with advance directives varies by type of provider and demographic characteristic. For example, a National Center for Health Statistics report found that 88 percent of discharged hospice patients had advance directives in 2007 compared to 65 percent of nursing home patients in 2004. Studies GAO reviewed found that individuals who were older, white, had higher education or incomes, or were women were more likely to have advance directives than others.
HHS provided technical comments on a draft of this report, which were incorporated as appropriate.