Advance Directives: Information on Federal Oversight, Provider Implementation, and Prevalence
Published: 2015-04-29T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: 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.
section_title: What GAO Found
paragraphs: 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.

section_title: Letter
paragraphs: 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  during the last 6 months of life that may involve making difficult decisions  about life sustaining treatment, which underscores the importance of  planning for medical care at the end of life. For example, 69 percent of  Medicare beneficiaries that died in 2009 experienced a hospitalization in  the last 90 days of life. A recent Institute of Medicine (IOM) report noted  that an advance directive may be a useful component of a comprehensive  approach to end-of-life care, called advance care planning, which  includes discussions about end-of-life treatment preferences and  documenting those preferences. In addition to written statements about  preferred medical care, an advance directive may be used to identify an  agent to make medical decisions on the individual’s behalf if necessary.
Beginning in the 1970s, public concerns over an individual’s right to  determine his or her own health care led to state legislative efforts to  encourage the use of advance directives, according to a 2008  Department of Health and Human Services (HHS) report. In 1990,  similar federal efforts resulted in what is commonly referred to as the  Patient Self Determination Act (PSDA), which, as amended, requires six  types of Medicare and Medicaid funded providers—hospitals, nursing  homes, hospices, home health agencies (HHAs), health maintenance  organizations, and Medicare Advantage (MA) organizations (hereafter  collectively referred to as covered providers)—to maintain written policies  and procedures to inform those they serve about advance directives, and  document information about individuals’ advance directives in the medical  record. The Centers for Medicare & Medicaid Services (CMS)—the  agency within HHS that administers Medicare and oversees Medicaid—is  responsible for ensuring covered providers’ implementation of the PSDA  requirement.
You asked us to review CMS’s oversight of covered providers’  implementation of PSDA regarding advance directives, related  information on providers’ practices, and the prevalence of individuals with  advance directives. In this report, we examine: (1) how CMS oversees  providers’ implementation of the PSDA requirement to maintain written  policies and procedures to inform individuals about advance directives  and document advance directives, and providers’ implementation of these  policies and procedures; (2) what is known about the approaches  providers use and challenges they face to inform individuals about  advance directives and document advance directives; and (3) what is  known about the prevalence of advance directives, and how they vary  across provider types, individuals’ demographic characteristics, and over  time.
To examine CMS’s oversight of covered providers’ maintenance of written  policies and procedures, and providers’ implementation of these policies  and procedures, we reviewed relevant laws, regulations, and CMS  documents and data. We also conducted interviews with CMS officials  and stakeholders, including officials that represent each of the six types of  covered providers, and two organizations representing individuals likely to  benefit from advance directives, including older individuals and those  near the end of life. In addition, we reviewed data in the Certification and  Survey Provider Enhanced Reporting (CASPER) system, which CMS  uses to retain data regarding deficiencies, including those related to  advance directives, identified during surveys of providers that must meet  certification standards for participation in Medicare. Such providers  include nursing homes, HHAs, and hospice care providers. To collect  CASPER data, CMS enters into agreements with state survey agencies  to conduct provider surveys and report survey results into the CASPER  system. However, a substantial portion of certain covered providers,  particularly hospitals, are certified for participation in Medicare through  accrediting organizations, and full survey data for these providers are  generally not included in the CASPER system. The CASPER system  does however, contain full survey data from a relatively small number of  providers—hospitals, HHAs, and hospices— accredited through  accrediting organizations, which are included in our analysis. To assess  the reliability of the CASPER data, we reviewed data documentation,  discussed the data with CMS officials, and examined the data for  consistency and unusually high and low values. We determined that the  data were sufficiently reliable for our purposes.
To examine what is known about the approaches providers use and  challenges they face informing individuals about advance directives and  documenting advance directives, we conducted a literature review of peer  reviewed articles and selected federal government reports published from  2009 through 2014. Using search terms including “advance directive” and  “living will,” we identified 297 studies from our search of social science  research and medical bibliographic databases, including MEDLINE and  ProQuest, and selected 125 studies for in-depth review based on their  relevance to our objectives. For each of the studies that we reviewed, we  identified how a particular type of covered provider informs patients about  advance directives; how the provider documents whether a patient has an  advance directive; challenges related to these activities; and how these  challenges can be addressed. In addition, our work was informed by  IOM’s 2015 Dying in America report, a key source of information on  end-of–life care. We also interviewed stakeholders representing covered  providers and individuals likely to benefit from an advance directive, and  supplemented these interviews with information from CMS about how the  agency oversees managed care plans.
To examine what is known about the prevalence of advance directives  and how this varies across provider types, individuals’ demographic  characteristics, and over time, we relied on the same literature review of  peer reviewed articles and selected federal government reports published  from 2009 through 2014. For each of the studies relevant to this objective,  we identified the prevalence of individuals with an advance directive  within the general population, within provider types, by demographic  characteristics, and how the prevalence has changed over time. In  addition, we identified statistical data from four studies: (1) Dying in  America, IOM; (2) “Completion of Advance Directives Among U.S.  Consumers,” American Journal of Preventive Medicine; (3) “Use of  Advance Directives in Long-Term Care Populations,” National Center for  Health Statistics Data Brief; and (4) “Advance Directive Completion by  Elderly Americans: A Decade of Change,” Journal of the American  Geriatrics Society. To assess data reliability, we reviewed information  about each study including its source (e.g., peer reviewed journal),  methodology, and the sample size upon which the study’s estimates were  based. To the extent that comparable information was available, we also  compared the study’s estimates with other published work to determine  whether the findings were reasonable. On the basis of this assessment,  we determined that the data were sufficiently reliable for our purposes. In  addition, we analyzed CMS data from the CASPER system on the  number of nursing home patients with advance directives from 2004 to  2014. As previously noted, we assessed the reliability of the CASPER  data and determined that the data were sufficiently reliable for our  purposes.
We conducted this performance audit from June 2014 to April 2015 in  accordance with generally accepted government auditing standards.  Those standards require that we plan and perform the audit to obtain  sufficient, appropriate evidence to provide a reasonable basis for our  findings and conclusions based on our audit objectives. We believe that  the evidence obtained provides a reasonable basis for our findings and  conclusions based on our audit objectives.
subsections: section_title: Background
subsections: section_title: PSDA, Advance Directives, and Advance Care Planning
paragraphs: 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.  Among other things, the policies and procedures maintained by covered  providers are required to specify that the provider will: (1) provide written  information to all adult individuals receiving medical care by or through  the provider on their rights under state law to make decisions concerning  medical care, including the right to execute an advance directive; and   (2) document in the medical record whether the individual has an  advance directive.
The PSDA defines an advance directive as a written instruction, such as  a living will or durable power of attorney for health care, recognized under  state law (whether statutory or as recognized by the courts of the state)  and relating to the provision of such care when the individual is  incapacitated. For example, an advance directive may be used to record  an individual’s wish to receive all available medical treatment, to withdraw  or withhold certain life sustaining procedures, or to identify an agent to  make medical decisions on the individual’s behalf if necessary. 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. According to the  IOM, advance directives are most effective when used as part of advance  care planning, which may involve multiple, in-depth discussions with  family members, legal and financial counsel, and healthcare providers,  and may also include the formulation of medical orders. The IOM also  reported that multiple discussions at various stages of life are needed,  with greater specificity as an individual’s health deteriorates, because an  individual’s medical conditions and treatment preferences may change  over time. Therefore, a comprehensive approach to end-of-life care,  rather than any one document, such as an advance directive, helps to  ensure that medical treatment given at the end of life is consistent with an  individual’s preferences.
section_title: Covered Providers and CMS Oversight
paragraphs: The six provider types covered by the PSDA provide or arrange for  Medicare or Medicaid health care services in multiple settings for  individuals of varying demographics. For example, nursing homes  generally provide care in an institutional setting to older individuals who  have chronic conditions, such as congestive heart failure, while hospices  generally deliver palliative care in an institutional, home, or home-like  setting to critically ill individuals of various ages who are close to the end  of life. The characteristics and distribution of individuals enrolled in MA  and Medicaid managed care also have similarities and differences. For  example, individuals enrolled in MA may be disabled or elderly (over the  age of 65), and individuals enrolled in Medicaid managed care may  include adults who are also disabled and elderly. However, in 2013, CMS  reported that half of the Medicaid population was children in comparison  to Medicare in which 83 percent of beneficiaries were over age 65. In  addition, while most individuals enrolled in Medicare are not enrolled in a  managed care plan, over 70 percent of individuals enrolled in Medicaid  are enrolled in some form of Medicaid managed care, according to CMS.  However, the distribution of individuals enrolled in Medicaid across  various demographic groups—disabled, elderly, adults, and children— varies widely by state.
In order to participate in the Medicare or Medicaid programs, covered  providers must comply with applicable federal standards, including PSDA  requirements. CMS is responsible for oversight of providers’ compliance  with PSDA requirements and does so through both state survey agencies  and accrediting organizations.
CMS enters into agreements with state survey agencies to conduct  oversight activities of covered providers. Specifically, four of the six  covered provider types—hospitals, nursing homes, HHAs, and  hospices—must demonstrate their compliance with federal standards to a  state survey agency. These agencies conduct surveys of covered  providers—observations, interviews, and document/record reviews—that  assess compliance with applicable requirements for Medicare and/or  Medicaid participation. The survey process covers multiple standards. For  example, there are about 200 quality and safety standards for nursing  homes that range from determining the prevalence of pressure sores and  use of restraints to documenting the posting of an individual’s bill of rights.
However, in some cases, particularly for hospitals, accrediting  organizations provide primary oversight. Specifically, hospitals, HHAs,  and hospices that choose to undergo accreditation by an accrediting  organization, rather than certification from a state agency, must  demonstrate to the accrediting organization their ability to meet the  standards of accreditation, including PSDA standards. The accreditation  organization subsequently recommends to CMS certification of providers  meeting such standards. The processes that accrediting organizations  use to certify providers for Medicare participation are subject to CMS  review and approval. In addition, under agreements with CMS, state  survey agencies annually survey a sample of accredited providers to  verify the results of surveys conducted by the accrediting organizations,  and assess the organizations’ ability to monitor providers’ compliance  with federal standards.
The two remaining covered provider types—MA and Medicaid managed  care plans—must contract with CMS or individual states to participate in  the Medicare or Medicaid programs. Specifically, under MA, CMS  contracts with private health plans to provide covered services to  individuals who enroll in an MA plan, while under Medicaid managed  care, individual states contract with private health plans to cover medical  services; however, both MA and Medicaid managed care plans are  prospectively paid a per person, or capitated, payment.
section_title: CMS Oversees Covered Providers’ Implementation of the Advance Directive Requirement by Providing Guidance and Monitoring Implementation
subsections: section_title: CMS Provides Guidance to Help Covered Providers Implement the Advance Directive Requirement to Maintain Written Policies and Procedures
paragraphs: 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. For example, CMS issues operations  manuals specific to five provider types that describe the advance directive  requirement and how each of these providers is required, in accordance  with federal regulations, to maintain and provide each patient with written  notice of the provider’s policies related to advance directives. These  operations manuals also describe how the providers are required to  maintain policies related to documentation of an individual’s advance  directive in the individual’s medical record. CMS shares oversight of  Medicaid managed care plans, the sixth covered provider type, with  individual states. CMS is responsible for approving managed care  contracts to ensure that they conform to advance directive requirements  in federal regulation, and states are responsible for administering these  contracts, including providing guidance to plans and ensuring that plans  comply with contractual requirements, according to CMS officials. As a  result, CMS does not issue guidance to Medicaid managed care plans.
CMS also provides an operations manual to four covered provider  types—hospitals, nursing homes, HHAs, and hospices—to help these  providers understand the standards state survey agencies will use during  surveys to monitor the providers’ implementation of the advance directive  requirement. Covered provider types may use this information to ensure  that survey standards are met. In addition, CMS’s guidance informs the  standards that accrediting organizations use during surveys to monitor  accredited providers’ implementation of the advance directive  requirement, because these standards must be approved by CMS as  meeting or exceeding the Medicare standards. Guidance in the  operations manual describes to state survey agencies and covered  providers the activities and documents that may be observed and  reviewed during surveys. For example, the operations manual indicates  that state survey agencies may review the provider’s policies, examine an  individual’s medical records for documentation that required information  was provided to the individual, and whether or not the individual has an  advance directive; or conduct interviews with other individual patients and  provider staff to understand how the provider’s policies are implemented.  One stakeholder we spoke with that represented HHAs reported that the  survey process described in the operations manual demonstrates the  importance that CMS places on advance directives.
Additionally, CMS issues memoranda available to state survey agencies  and four of the six covered provider types—hospitals, nursing homes,  HHAs, and hospices—that contain clarifications and new or revised  guidance related to the advance directive requirement. For example, in  September 2012, a CMS memorandum notified state survey agencies  that CMS had updated its guidance regarding how survey agencies  should assess nursing home compliance with the advance directive  requirement and encouraged survey agencies to share the information  with providers. Further, in October 2013, a CMS memorandum to state  survey agencies clarified nursing homes’ cardiopulmonary resuscitation  (CPR) policies in the context of an individual’s advance directive.  According to the memorandum, nursing homes must provide CPR to all  individuals in their care unless an individual’s advance directive specifies  otherwise, and may not establish or implement facility-wide “no CPR”  policies. The memorandum instructs state survey agencies to examine  nursing home policies and individuals’ medical records to ensure that no  such policy has been established or implemented. A stakeholder that  represented nursing home providers reported that the memoranda and  updated survey guidance for nursing home providers clarified and  reinforced CMS’s expectations for nursing homes’ policies related to  advance directives, and demonstrated CMS’s focus on providing  oversight in this area.
In addition to the guidance that CMS provides to MA plans—the fifth  provider type—through the Medicare Managed Care Manual (chapter 4  entitled, “Benefits and Beneficiary Protections”), CMS also provides MA  plans with model documents used to inform enrollees about advance  directives to demonstrate how plans are to implement the guidance in the  manual. For example, the model document contains the exact wording  that the plans must use to inform individuals enrolled in MA plans about  their right to formulate an advance directive. MA plans are required to  provide this document, called an Evidence of Coverage, to each  individual at initial enrollment and each year thereafter. According to CMS  officials, MA plans are not permitted to modify the language in the model  document unless otherwise instructed by CMS. Officials also reported  that CMS annually reviews the policies and procedures in the model  document and, when necessary, updates them to ensure that they reflect  current laws and CMS policies. 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.
section_title: CMS Monitors Covered Providers’ Implementation of the Advance Directive Requirement
paragraphs: 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, under agreements with  CMS, state survey agencies periodically survey four of the six provider  types—hospitals, nursing homes, HHAs, and hospices. Survey  frequencies for each provider type are determined by statute or CMS  policy. For example, the frequency of nursing homes, HHAs, and  beginning in 2015, hospice standard surveys is statutorily determined and  must occur, on average, every year for nursing homes and every 3 years  for HHAs and hospices. The frequency of hospital standard surveys is  determined by CMS and should occur, on average, every 3 years.  According to CMS officials, state survey agencies follow up with providers  to correct deficiencies found during surveys, and may work with CMS to  impose enforcement actions, such as civil monetary penalties and  termination, on providers that do not correct deficiencies in a timely  manner.
Through state survey agencies, CMS retains data regarding deficiencies  related to advance directives identified during surveys of hospitals,  nursing homes, HHAs, and hospices. The data—which, according to  CMS officials, the agency uses for enforcement actions—indicate that the  rate of noncompliance with the advance directive requirement among  these four covered provider types in 2012 and 2013 was less than   3 percent for the providers surveyed in each given year. For example,  about 2 percent of the 14,161 nursing homes that were surveyed in 2013  had a deficiency related to the advance directive requirement.  Deficiencies related to the advance directive that were identified during  surveys of the four provider types included providers’ failure to inform  individuals about advance directives, including failure to provide individual  patients with written information about the providers’ policies regarding  advance directives. Providers also failed to accurately document an  individual’s advance directive in the medical record. Surveyors based  their findings on observations, medical record reviews, and interviews  with provider staff, and noted that a provider’s failure to ensure that  individuals have an opportunity to formulate complete and accurate  directives has the potential to cause harm to individuals who may receive  treatment or have treatment withheld when their exact treatment  preferences are not known. In addition, accrediting organizations— through findings from periodic surveys of providers that would include  findings related to providers’ compliance with the advance directive  requirement—may recommend to CMS whether accredited providers  should maintain their certification.
In addition to the survey process for hospitals, nursing homes, HHAs, and  hospices, CMS reviews contracts from the two remaining covered  provider types—MA plans and Medicaid managed care plans.  Specifically, CMS reviews MA and Medicaid managed care plan contract  provisions addressing compliance with applicable requirements, including  the advance directive requirement. According to CMS officials, each MA  plan must annually renew its contract with CMS indicating that it will  comply with Medicare laws and regulations, which includes the advance  directive requirement. Although the MA plan’s contract application  indicates that CMS may conduct monitoring activities, such as on-site  visits to the plan’s facilities to verify the plan’s compliance with Medicare  requirements, CMS does not currently conduct such activities related to  the advance directive requirement. CMS officials told us that current  audits of MA plans are focused on outcome based measures, such as  plans’ coverage determinations, which would not indicate noncompliance  with 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. CMS staff use a contract review  checklist that includes the regulatory language related to the advance  directive requirement when conducting their review. For example, staff  are to indicate on the review checklist whether the contract under review  requires that the plan maintain written policies and procedures on  advance directives for all adult individuals receiving medical care by or  through the plan. However, CMS does not currently have data on the  extent to which Medicaid managed care plans’ contracts address the  advance directive requirement. Although CMS recently began  electronically collecting contract review data, the data will indicate the  extent to which plans’ contracts address advance directive requirements,  but not the extent to which plans’ implementation is in compliance with  the contractual provisions. CMS does not conduct audits of Medicaid  managed care plans to monitor implementation or identify noncompliance  with contractual provisions. CMS officials reported that this is because  individual states are legally responsible for monitoring the Medicaid  managed care plans with which they contract.
section_title: Approaches Used to Inform Individuals about Advance Directives Vary by Provider Type, but Providers Face Similar Challenges
paragraphs: 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. For example, four  of the provider types—hospitals, nursing homes, HHAs, and hospices— provide individuals with information about their right to formulate an  advance directive during the admission process, according to interviews  with stakeholder officials representing these provider types and 10  studies. In contrast, MA plans and Medicaid managed care plans  provide written information to individuals on their right to formulate an  advance directive during the enrollment process, according to  stakeholders we interviewed. MA plans provide individuals enrolling in the  plan with a model document developed by CMS—the Evidence of  Coverage—to inform individuals about their right to have an advance  directive, according to CMS officials. Medicaid managed care plans also  provide written information at the time of enrollment, according to a  stakeholder official that represented a Medicaid managed care plan.
Providers’ approaches also vary in the extent to which they each discuss  information about advance directives with individuals, according to the  literature and stakeholder officials. Specifically, hospital staff do not  generally discuss advance directives with individuals during the  admission process, as five stakeholders, including officials representing  three provider types and individuals close to the end of life, and six  studies noted. By contrast, staff for three other covered provider types— nursing homes, HHAs, and hospices—nurses, social workers, or case  managers generally discuss advance directives during the admissions  process as part of one or more advance care planning discussions with  individual patients, according to the findings from four studies and five  stakeholders. However, information on the extent to which MA and  Medicaid managed care plan providers discuss advance directives with  individuals enrolled in the plans is more limited. Specifically, we did not  identify any peer reviewed studies in our literature review that addressed  MA and Medicaid managed care plans. In addition, although a  stakeholder representing both an MA plan and Medicaid managed care  plan told us that while the stakeholder’s plans require their providers to  discuss advance directives with individual enrollees during an initial  health assessment and during annual visits with their physicians, not all  plans take a similar approach.
Covered providers generally document whether an individual has an  advance directive either in paper medical records or in an electronic  health record, according to the limited information in the literature and the  stakeholder officials we interviewed. Specifically, each stakeholder  official we spoke with and six studies we reviewed found that all six  covered provider types document individuals’ advance directives using  either paper medical records or electronic health records, and some of  these sources indicated that providers may also keep a copy of  individuals’ directives in these records if such documents are available.
Providers face similar challenges in informing individuals about advance  directives and documenting them, according to the literature and  stakeholder officials. 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. Specifically, 18 studies  found and five stakeholder officials representing providers and seniors  confirmed that providers, individual patients, or both are often  uncomfortable talking about end-of-life issues, in some cases even when  an individual is close to the end of life. For example, 9 studies found that  physicians often do not communicate poor prognoses with individuals, in  part, due to their discomfort to do so, which can deprive individuals of the  opportunity to understand that they are nearing the end of life and the  opportunity to discuss their advance care preferences in that context.  Three studies also found confusion about which staff—nurses, social  workers, or physicians—should have discussions to inform individuals  about advance directives, although most individuals prefer to have  these discussions with their physicians, according to 3 other studies. In  addition, 10 studies found that physicians may either not have the time or  do not spend the time discussing end-of-life issues with individual  patients. Two stakeholders that represented managed care plans and  seniors also noted the time constraints physicians face when discussing  advance directives with individual patients.
Other challenges that providers face informing individuals about advance  directives are associated with individuals’ lack of understanding about  advance directives and challenges informing certain demographic groups  about them, according to the literature. Specifically, 13 studies found that  many individuals lack an understanding about advance directives,  assume incorrectly that these documents are expensive or require  attorneys, or have difficulty understanding complex medical information  included in some advance directive forms. Thirteen studies also  identified challenges specific to Latinos or African Americans, such as  language barriers, lack of trust in health care providers, or fear that  advance directives may prevent them from getting the care they want to  receive.
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. Specifically, nine studies found errors in individuals’  records related to advance directives, such as lack of documentation  about advance directives that should have been included in the records— in one case despite the fact that individuals had recently discussed  directives with providers. In addition, five studies reported challenges  related to access to this information, such as challenges identifying where  a copy of individuals’ directives may be located or concerns that  information about directives may not be transferred with individuals if they  are moved from one provider to another; for example, from a nursing  home to a hospital. Similar concerns about access to documents were  reiterated by four stakeholders we interviewed that represented providers  and seniors. Two stakeholders representing nursing homes and managed  care plans reported that providers face difficulties ascertaining in the  documentation whether individuals had recently reviewed or updated their  directives, or if the directives in individuals’ records were current.
Providers may better address challenges to inform individuals about  advance directives and document them by using leading practices,  according to the literature and stakeholders. Some of the leading  practices for informing individuals about advance directives include  patient education, materials tailored for specific groups, or an iterative  advance care planning process. For example, one study using the  Respecting Choices program—an advance care planning model  developed by Gunderson Health System that includes multiple stages of  care planning involving patients, providers, and communities— demonstrated that a provider using patient education and staff training  efforts can increase the extent to which individuals understand and  complete advance directives. In addition, 12 studies suggested that  providers use materials designed for specific groups, such as videos, for  those with low literacy or information developed for those with specific  medical conditions that can help individuals better understand and  communicate their preferences with providers. Eleven studies and four  stakeholders that represented providers and individuals nearing the end  of life also suggested using an iterative advance care planning process,  such as a process that would start with community education about  advance directives, continue with increasingly specific discussions with  providers as an individual’s health deteriorates, and culminate with the  completion of increasingly specific documents, such as advance  directives or medical orders, as an individual nears the end of life.  Fifteen studies noted the importance of such planning when individuals  are diagnosed with a major illness or impending loss of decision-making  capacity so that the individuals can communicate their preferences with  providers before they are unable to do so.
Providers may also use leading practices to better address challenges to  documenting information about advance directives in order to help ensure  the accuracy and the accessibility of this information in an individual’s  medical record, according to the literature and stakeholder officials. For  example, five studies found that using specific documentation methods,  such as spreadsheets or electronic health record systems, can improve  the accuracy—including quantity and quality—of the information about  advance directives maintained in individuals’ medical records. Six  studies also suggested that providers adopt electronic health record  systems that, in addition to indicating whether individuals have an  advance directive, could contain copies of the directives to ensure that  individuals’ preferences are more easily accessible to providers and  families, especially for individuals that may transfer from one provider to  another.
section_title: Many Adults Have Advance Directives, but the Prevalence Varies by Provider Type, Demographics, and Over Time
paragraphs: 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. In addition, an earlier  nationally representative survey that included younger adults age 18 and  older found that an estimated 26 percent of this population had an  advance directive during the 2009 and 2010 time period.
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. (See fig. 1.) Among the four covered provider types for which  information was available, our analysis of 12 studies found that hospital  patients were least likely to have advance directives and that hospice  patients, who are by definition close to the end of life, were the most  likely to have advance directives as compared with nursing home and  HHA patients. We did not find peer reviewed studies in our literature  review on the prevalence of those with advance directives among  individuals enrolled in MA and Medicaid managed care plans, although  these individuals may also be served by the other four covered provider  types.
In addition to variations by provider type, the prevalence of advance  directives also varies among individuals based on certain demographic  characteristics, such as medical conditions including chronic and life  threatening diseases, according to the literature. For example, in 2010,  individuals 18 years of age and older with chronic diseases were more  likely than those without such diseases to have advance directives, with  an estimated 33 percent and 22 percent prevalence, respectively. (See  fig. 2.) A total of 20 studies found that individuals with certain medical  conditions were more likely to have advance directives than healthier  individuals. In general, certain medical conditions—such as diabetes,  malignancies, renal dysfunction, dementia, or declining health—increased  the likelihood that individuals had advance directives, according to the  literature.
The prevalence of advance directives also varies by age, race, income,  education, and gender, according to the literature. Older individuals were  more likely to have advance directives than younger individuals. For  example, a 2009 and 2010 nationally representative survey found that an  estimated 51 percent of individuals 65 years of age and older had  advance directives, while among individuals 18 to 34 years old, an  estimated 12 percent had advance directives. The survey also   indicated that an estimated 31 percent of whites compared to an  estimated 17 percent of African Americans or Latinos had advance  directives. In addition, this study found that an estimated 32 percent of  individuals with incomes of $75,000 or more had advance directives in  comparison to an estimated 21 percent of those with incomes under  $25,000. Similarly, prevalence among individuals with post-graduate  educations compared to those who had not completed high school was  an estimated 38 percent and an estimated 14 percent, respectively,  according to the study. Women were also more likely to have advance  directives than men, an estimated 28 percent versus 25 percent,  according to the study. In addition to this study, 36 studies found  variations in the prevalence of advance directives by age, race, income,  education, or gender.
The prevalence of advance directives has been increasing over time,  according to the literature and CMS data. For example, prevalence within  the older population has increased over time, according to a study  examining the prevalence of advance directives for those 60 years of age  or older who died between 2000 and 2010. This study found that  individuals 60 years of age and older who died during that period with   an advance directive increased from an estimated 47 percent to   72 percent. Available information on nursing home residents also shows  an increase over time. Our analysis of CMS data found that the proportion  of nursing home patients with advance directives has increased between  2004 and 2014. We found that the average percentage of nursing home  patients who had an advance directive increased from 46 percent in 2004  to 55 percent in 2014, based on data from nursing homes that were  surveyed during that time. (See fig. 3.) However, the percentage of  nursing home residents having advance directives fluctuated over this  period. Eight additional studies found increases in the prevalence of those  with advance directives over time for a specific group, such as those from  one state or type of provider. Factors that may have contributed to the  increasing prevalence of individuals with advance directives over time,  according to the literature, include community education efforts and  provider staff training.
section_title: Agency Comments
paragraphs: We requested comments on a draft of this product from HHS. HHS  provided technical comments, which we incorporated as appropriate.
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If you or your staff have any questions about this report, please contact  me at (202) 512-7114 or DsouzaV@gao.gov. Contact points for our  Offices of Congressional Relations and Public Affairs may be found on  the last page of this report. GAO staff who made key contributions to this  report are listed in appendix I.
section_title: Appendix I: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact
section_title: Staff Acknowledgements
paragraphs: In addition to the contact named above, James C. Musselwhite Jr.,  Assistant Director; George Bogart; Kye Briesath; Leia Dickerson;   Julianne Flowers; Jennel Lockley; Drew Long; and Vikki Porter made  key contributions to this report.