Advance Care Planning: Selected States' Efforts to Educate and Address Access Challenges

Many individuals receive medical care for a serious or life-limiting condition during the last months of life, which may involve making difficult decisions about life-sustaining treatment. Advance care planning helps ensure that physicians, families, and friends have documentation outlining individuals' wishes under these circumstances.

GAO was asked to identify issues related to completing and accessing advance care planning documents. This report describes, among other things, (1) the challenges individuals and providers face completing and accessing the documents, and (2) selected states' strategies for improving individuals' and providers' understanding of and access to advance care planning documents.

GAO reviewed documents and interviewed officials from national stakeholder organizations involved in advance care planning or aging issues, and conducted a literature review of relevant articles published from January 2012 to April 2018 in peer-reviewed and other publications. In addition, GAO interviewed officials from state agencies and stakeholder organizations in California, Idaho, Oregon, and West Virginia. GAO selected those four states because they were active in encouraging advance care planning and had registries for completed documents that were in different stages of development.

The Department of Health and Human Services, states, and stakeholders provided technical comments on a draft of this report, which GAO incorporated as appropriate.

Advance care planning documents—including advance directives and physician orders for life sustaining treatment (POLST)—allow individuals to express their wishes for end-of-life care. Advance directives, which include living wills and health care power of attorney, provide direction regarding care when an individual becomes incapacitated. POLST documents are appropriate for seriously ill individuals whose health status indicates the need for medical orders to be documented in their medical records.

Stakeholders from national organizations and officials in the four states GAO selected to review cited several challenges—affecting both individuals and health care providers—related to the use of advance care planning documents. In particular, they noted a lack of understanding about how to complete the documents and how to initiate conversations about advance care planning. They also cited challenges related to the difficulty of ensuring access to completed documents when needed, such as in an emergency situation.

Officials from state agencies and stakeholder organizations in the four selected states reported pursuing various strategies to improve understanding of advance care planning documents by conducting education efforts for individuals and providers. In addition, the states utilized strategies to improve access to completed documents, such as improving the electronic exchange of information between health records and a state registry, which is a central repository intended to improve access to the documents. Further, stakeholder officials reported strategies related to the acceptance of out-of-state advance care planning documents; all four selected states had statutory provisions that address the validity of documents executed in another state.

Many individuals receive medical care for a serious or life-limiting  condition during the last 6 months of life that may involve making difficult  decisions about life-sustaining treatment. Advance care planning helps  ensure that physicians, families, and friends have documentation outlining  individuals’ wishes under these circumstances. Advance care planning  documents include advance directives and physician orders for life- sustaining treatment (POLST) forms. Advance directives, such as living  wills or health care power 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. POLST  forms—typically used for seriously ill or frail individuals—instruct health  care providers which specific medical actions, such as cardiopulmonary  resuscitation (CPR), to take or not to take in the event of a medical  emergency.

Some blank advance care planning documents can be downloaded from  state government or other websites to be voluntarily completed by  individuals or by health care providers after consultation with the  individual or their representative. Completed documents may be added to  an individual’s medical records or, depending on the state, stored in a  state registry, which is a central repository of advance care planning  documents intended to facilitate individuals’ and providers’ access to  these documents when needed. Depending on the state, and how and  where advance care planning documents are stored, providers and others  may not be aware that the documents exist or have access to them when  needed; as a result, providers may not follow individuals’ documented  wishes for end-of-life care. Also, state laws vary in what is considered a  valid advance directive and POLST form, and whether these documents  can be used in a state other than the state in which the document was  executed. Although advance directives and POLST forms have been  available for at least 20 years and 15 years, respectively, there is still  interest in the strategies used at the state-level to help promote the  voluntary completion of these documents, and strategies to provide  access through medical records or a state registry to help ensure the  documents are readily available to individuals and providers. At the  federal level, several agencies within the Department of Health and  Human Services (HHS) play a role in providing or collecting information  on advance care planning, including the Centers for Medicare & Medicaid  Services (CMS), which provides incentives to encourage use of electronic  health records.

You asked us to identify issues and states’ strategies related to  completing and accessing advance care planning documents. In this  report, we describe  1.  state-level advance care planning information available online, and  which states have registries for completed documents;  2.  challenges individuals and providers face in completing and accessing  advance care planning documents; and  3.  selected states’ strategies for improving individuals’ and providers’  understanding of and access to completed advance care planning  documents.

To describe the state-level advance care planning information available  online, and which states have registries of completed documents, we  reviewed reports and studies by national organizations, including the  American Bar Association Commission on Law and Aging, and the  National POLST Paradigm. We also conducted searches of informational  websites provided by state governments and non-government  organizations operating within each state for available advance care  planning information, including documents.

To describe the challenges individuals and providers face in completing  and accessing advance care planning documents, we reviewed  documents and interviewed officials from six national stakeholder  organizations involved with advance care planning or aging issues: Aging  with Dignity; the American Bar Association Commission on Law and  Aging; the Coalition to Transform Advanced Care; the National Hospice  and Palliative Care Organization; the National POLST Paradigm; and the  Pew Charitable Trusts, which administered a project on improving end-of- life care. We also conducted a literature review of relevant articles  published in peer-reviewed and other publications from January 2012 to  April 2018. We identified publications through a search of bibliographic  databases, including AgeLine, MEDLINE, and Scopus, using terms such  as “advance directive,” “POLST,” and “documentation.” Of the 253  citations we reviewed, we determined there were 92 relevant articles. We  reviewed the 92 articles for information related to advance care planning,  including prevalence of advance care planning documents, as well as  challenges to access and voluntary and informed completion of  documents. We also reviewed relevant GAO and other reports. In  addition, we reviewed documents and interviewed officials from federal  agencies that play a role in providing or collecting information on advance  care planning, including CMS, the Office of the National Coordinator for  Health Information Technology, and the National Institutes of Health’s  National Institute on Aging. Finally, we reviewed documents and  interviewed officials in four states—California, Idaho, Oregon, and West  Virginia. We selected the four states because they were active in  encouraging the use of advance care planning and had registries for  completed advance care planning documents that varied in type or stage  of development, based on our literature review and interviews with  national stakeholder organizations. The officials we interviewed or  obtained information from included those from state agencies, such as  the state agency responsible for emergency medical services (EMS), and  other non-governmental stakeholder organizations that were involved in  advance care planning activities (state stakeholder organizations). The  perspectives of the officials from the national stakeholder organizations  and those interviewed in the selected states are not generalizable, but  provided us with valuable insight on the challenges individuals and  providers face in completing and accessing advance care planning  documents.

To describe selected states’ strategies for improving the understanding of  advance care planning documents and information, and access to  completed documents, we reviewed documents and interviewed officials  from state agencies and state stakeholder organizations in our four  selected states. Specifically, for each state, we interviewed officials  representing EMS providers and the state registry (registries for advance  directives, POLST forms, or both). We also reviewed selected states’  statutes related to advance care planning documents, reviewed articles from our literature review, and reviewed documents and interviewed  officials from national stakeholder organizations, CMS, and the Office of  the National Coordinator for Health Information Technology.

We conducted this performance audit from October 2017 to February  2019, 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.

Decisions about end-of-life care are based on an individual’s personal  beliefs and values. Advance care planning documents, including advance  directives and POLST forms, allow individuals to express their wishes for  end-of-life care. These documents serve different purposes depending on  an individual’s stage of life or health condition. (See fig. 1.)

According to a report by the Institutes of Medicine, advance care planning  documents are most effective when used as part of broader advance care  planning efforts, which may involve multiple, in-depth discussions with  family members and health care providers. The report also stated 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, helps to ensure that medical treatment given at the end of  life is consistent with an individual’s preferences.

An advance directive is a written instruction recognized under state law  and relating to the provision of health care when an 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 treatments, or to identify an agent to  make medical decisions on the individual’s behalf if necessary. The most  common advance directive documents are living wills and health care  power of attorney.

Life-Sustaining Treatment   Life-sustaining treatment means the use of  available medical machinery and techniques,  such as heart-lung machines, ventilators, and  other medical equipment and techniques, that  may sustain and possibly extend life, but  which may not by themselves cure the  condition.

Living will. A living will is a written expression of how an individual  wants to be treated in certain medical circumstances. Depending on  state law, a living will may permit an individual to express whether  they wish to be given life-sustaining treatment in the event they are  terminally ill or injured, to decide in advance whether they wish to be  provided food and water via intravenous devices (known as tube  feeding), and to give other medical directions that affect their health  care, including at the end of life. A living will applies to situations in  which the decision to use life-sustaining treatments may prolong an  individual’s life for a limited period of time and not obtaining such  treatment would result in death. Having a living will does not mean  that medical providers would deny medications and other treatments  that would relieve pain or otherwise help an individual be more  comfortable.

Health care power of attorney. A health care power of attorney is a  document that identifies a health care agent—also called a health  care proxy—as the decision maker for the patient. Under state law,  the health care power of attorney typically becomes operative when  an individual is medically determined as unable to make decisions.  Most commonly, this situation occurs either because the individual is  unconscious or because the individual’s mental state is such that they  do not have the legal capacity to make decisions. As with living wills,  the process for validly executing a health care power of attorney  depends on the state of residence. The health care power of attorney  may be designated by using a model form in state statute or it may be  drafted specifically for an individual by a lawyer. Similar to the living  will, medical providers will make the initial determination as to whether  an individual has the capacity to make their own medical treatment  decisions.

Most adults in the United States do not have an advance directive.  According to a 2017 study, about 37 percent of adults had an advance  directive. However, the proportion of individuals with an advance  directive can vary by demographic group. See appendix I for more  information related to the prevalence of advance directives.

POLST forms differ from advance directives in that they are medical  orders used to communicate an individual’s treatment wishes, and are  appropriate for individuals with a serious illness or advanced frailty near  the end-of-life. For these individuals, their current health status indicates  the need for medical orders. In the event of a medical emergency, the  POLST form serves as an immediately available and recognizable  medical order in a standardized format to aid emergency personnel.  Following the POLST form orders, emergency personnel can honor the  individual’s treatment wishes as communicated to and documented by the  individual’s health care provider. See appendix II for information on the  types of information included on a POLST form.

Information on Completing and Storing Advance Care Planning Documents

Both government and non-government organizations, such as state  agencies or the National POLST Paradigm, provide individuals and  providers information on how to access or download blank advance care  planning documents through their websites and education campaigns.  For Medicare and Medicaid providers, the Patient Self Determination Act  requires certain providers participating in these programs—such as  hospitals and nursing homes—to maintain written policies and procedures  to inform individuals about advance directives, and document information  about individuals’ advance directives in their medical records. Once the  advance care planning documents are completed, individuals and  providers can access them through various systems. For example, an  individual may have their advance directive or POLST form in their  electronic health record (EHR), which can be accessed by their provider  or other medical personnel in the event that the individual has a medical  emergency. In addition, advance directives can be stored in a lawyer’s  office or in an individual’s home; these documents would have to be  found and transported to the medical setting if needed. Some states have  registries (either electronic or paper-based) for advance directives or  POLST forms, whereby individuals and providers can access the registry  and obtain the necessary documents.

Websites Related to Advance Care Planning Were Available for All States; About One Quarter of States Had Registries for Completed Documents For All States, Advance Care Planning Information, Such as Blank Documents, Was Available Online

We found websites related to advance care planning for every state;  however, the amount of information on these websites varied. In addition,  about a quarter of states had registries to provide access to completed  advance directives, POLST forms, or both.

For all states, either government or non-government websites provided  information, which could include blank documents, on advance care  planning for individuals and providers within the state. However, the  amount of available information about advance care planning varied by  state. The information available online varied from having an advance  care planning document available to download, to extensive information  on advance care planning. For example, in Mississippi, the State Board  of Medical Licensure provided a POLST document that could be  downloaded from its webpage with no additional information. In contrast,  California—through its state attorney general’s website—offered a blank  advance directive document that could be downloaded, as well as  additional information on advance directives, including who should fill out particular types of advance care planning  documents, and the importance of filling out these documents; and other resources, including brochures or information packets detailing  advance care planning and other relevant documents.

About One-Quarter of States Had Registries for Completed Advance Directives, POLST Forms, or Both

To give providers, individuals, or both access to completed advance care  planning documents, about one-quarter of states (14) had active  registries (either electronic or paper-based) of completed advance  directives, POLST forms, or both, as of November 2018. (See fig. 2.)  Specifically,

3 states had active registries for both completed advance directives

8 states had active registries solely for completed advance directives;

2 states had active registries solely for completed POLST forms,

1 state had an active registry for completed advance directives and  was piloting registries for completed POLST forms, and

37 states did not have active registries for either advance directives or  POLST forms.

The 14 states with active registries varied in how they administered them.  Some states’ registries were administered through state agencies or by  contracting with an outside organization. For example, in Oregon, the  state contracted with a large health system in the state to operate the  technical aspects of the state’s POLST registry, while in Vermont, the  Department of Health administered the state’s registry with technical  support from a private national document registry company. For other  states—such as New York, Virginia, and West Virginia—the state  registries were administered through non-government organizations in  collaboration with state agencies.

Challenges to Advance Care Planning Include Understanding the Types of Documents and Ensuring Access to Completed Documents

Based on our interviews with officials from national stakeholder  organizations, state agencies and stakeholder organizations in selected  states, and articles we reviewed, we identified two broad challenges to  advance care planning: (1) a lack of understanding about advance care  planning, including how to initiate conversations about advance care  planning and how to complete and follow advance care planning  documents; and (2) ensuring access to completed documents. In addition  to these two broad challenges, the officials we interviewed identified  challenges related to resources and the portability of advance care  planning documents.

Individuals and providers may struggle with how and when to initiate  advance care planning conversations. We previously reported that  providers identified informing individuals about advance care planning as  a challenge due to reluctance to talk about end-of-life issues. In  addition, officials from both national and state stakeholder organizations  identified challenges to providers properly counseling their patients about  advance care planning, either to avoid discussing death and dying with  their patients, or because of their own uncertainties regarding the timing  of when to hold such discussions. In addition to challenges related to  having advance care planning conversations, individuals and providers  may not understand that filling out the document is voluntary or how to complete and follow the advance care planning document, according to  officials from national stakeholder organizations and officials in the four  selected states. Officials from national stakeholder organizations and  articles we reviewed noted that challenges with voluntarily completing  advance care planning documents can arise when there are language or  cultural barriers to understanding these documents. When individuals or  providers do not understand the information being requested in advance  care planning documents, it can affect whether an individual’s wishes for  care are accurately represented. A state agency official in one state  identified challenges in ensuring EMS providers understand the  appropriate actions to take when they encounter a document that is  different from a traditional POLST form. For example, the state official  noted that EMS providers might assume that individuals who have a  wallet card on their person do not want CPR when the card actually  indicates that the individual has completed an advance directive or  POLST form to express their care wishes. This could result in treatment  that does not match the individual’s expressed wishes.

Once advance care planning documents are completed, additional  challenges exist to ensuring that providers have access to these  documents when needed, such as in an emergency situation. Officials  from the national stakeholder organizations, state agencies, and state  stakeholder organizations we interviewed identified challenges related to  accessing advance directives and POLST forms stored in EHRs.  Specifically, stakeholders identified challenges related to EHR  interoperability, such as where a provider in one health system cannot  access advance care planning documents recorded in an EHR at a  different health care system. While interoperability is not limited to  advance care planning documents, the challenges associated with  accessing advance care planning documents in EHRs can affect  providers’ abilities to honor an individual’s wishes in an emergency if they  do not have ready access to the documents. For example, when  emergency providers cannot readily access advance care planning  documents in another health system’s EHR, the providers might not be  aware of and provide treatment inconsistent with the wishes of someone  they are treating in the emergency room. National stakeholder officials  also noted challenges due to a lack of standardization in EHR systems.  For example, one national stakeholder official noted that EHR systems in  health care facilities do not always have standardized processes for  storing advance care planning documents—that is, one health care facility  might enter advance directive information into a physician’s notes section  of the EHR, while another might have a specific tab in the EHR for  advance directives. Due to the lack of standardization, providers might  not be able to find an individual’s advance care planning document, and  consequently provide treatment inconsistent with the individual’s  expressed wishes.

In addition to challenges related to understanding and accessing advance  care planning documents, officials from the national stakeholder  organizations, state agencies, and state stakeholder organizations we  interviewed identified other challenges related to resources and portability  of advance care planning documents.

State agency officials told us that the lack of dedicated resources for  advance care planning efforts, such as maintaining a registry, can be  challenging. For example, an Idaho official stated that, due to  resource constraints within the Secretary of State’s Office—which  administers its Health Care Directive registry—the office does not  have the personnel to maintain the registry at current document  submission rates.

National stakeholder officials discussed challenges with states’ legal  structures for accepting advance care planning documents—that is,  the portability of documents across state lines. For example, an  individual might fill out an advance directive or POLST form in one  state, but become ill in another state where these documents may not  be valid.

Various Strategies Used in Selected States to Improve Individuals’ and Providers’ Understanding of and Access to Advance Care Planning Documents

In our four selected states—California, Idaho, Oregon, and West  Virginia—state agencies and state stakeholder organizations pursued  various strategies to improve individuals’ and providers’ understanding of  advance care planning documents, as well as to improve their access to  completed advance care planning documents.

Selected States Used Education and Training to Increase Understanding of the Need for and Use of Advance Care Planning Documents

Officials from state agencies and stakeholder organizations in our  selected states described efforts to educate individuals about the  importance of advance care planning and train providers on the use of  advance care planning documents.

To address individuals’ lack of understanding of advance care planning,  state agency officials and stakeholders in our selected states used  strategies to inform them about the purpose of the documents and how to  fill them out. The following are some examples of these efforts.

Oregon. The Oregon POLST Coalition used its relationship with  stakeholder groups in the state—a large health system, and the state  health authority—to educate individuals about POLST forms. These  efforts included online videos and brochures intended to improve  individuals’ voluntary and informed completion of the documents.

West Virginia. The West Virginia Center for End-of-Life Care—which  administers the state’s advance care planning registry—collaborated  with the West Virginia Network of Ethics Committees and a national  organization to conduct public education presentations and  webinars.

For three of our selected states, educational efforts also included making  information about advance care planning available in other languages.  For example, in California, Idaho, and Oregon, POLST forms and other  information on advance care planning are available in Spanish. Articles  we reviewed stated that providing culturally sensitive documents that  communicate how to fill out the documents could help improve voluntary  and informed completion of advance care planning documents.

Officials from state agencies and state stakeholder organizations in all  four selected states reported conducting provider training, which included  working with EMS and hospital providers to train them on advance care  planning documents, such as how to use advance directives and POLST  forms and when to conduct end-of-life care conversations. The following  are examples of these efforts.

California. A state stakeholder organization in California conducted  train-the-trainer sessions to educate providers about POLST forms, so  the providers could subsequently conduct community training events.  The organization also published decision aids for providers and  individuals to help facilitate advance care planning conversations. The  organization, which focused on POLST education and training, noted  that it holds periodic conference calls with previous session  participants to provide ongoing support and continue discussions  about advance care planning.

Idaho. The state—through collaborations with stakeholder  organizations in Idaho—focused on improving advance care planning  through education efforts. Specifically, the state collaborated with  stakeholder organizations to conduct trainings on locating and  understanding advance care planning documents. In addition, the  organizations created EMS protocols related to accessing individuals’  wishes during emergencies. An Idaho official noted that successful  advance care planning education and outreach within the state has  led to a large increase in the number of advance care planning  documents submitted to the state’s registry.

Oregon. State stakeholder organizations conducted provider training  on advance directives and POLST forms. For example, an  organization that focused on improving advance care planning  education in the state developed an initiative, which included  educational materials and training programs, to improve patient  understanding of filling out and updating advance directives through  health care organizations and provider training. Further, according to  an official from the state health authority, POLST information is  included in the curriculum for all medical education in the state  ranging from emergency medical technicians to physicians.

West Virginia. The West Virginia Center for End-of-Life Care created  training manuals, led EMS training webinars, and provided other  online education materials to improve provider education about using  POLST forms and related protocols in the field.

National stakeholder organizations we interviewed and articles we  reviewed also noted that increasing the quality of the advance care  planning conversations between providers and their patients is an  important aspect of successful advance care planning efforts. One  strategy to improve the advance care planning conversations is to  conduct the conversations over multiple visits, according to national  stakeholders and articles.

Selected States’ Strategies to Improve Access to Completed Documents Included Interoperability between Electronic Health Records and Registries

Officials from state agencies and stakeholder organizations in our  selected states utilized strategies to improve access to current advance  care planning documents, including better interoperability between EHRs  and a state registry, and access to completed documents stored in  registries.

Officials from state agencies and stakeholder organizations identified  strategies to improve providers’ access to advance care planning  documents stored in an EHR and to ensure the EHR has the most current  copy of the document. One strategy used in Oregon enabled information  sharing between EHR systems and the state’s electronic registry of  completed POLST forms, allowing providers access to the most current  POLST forms, according to state officials. Certain EHR systems— including those in three large health systems in the state—are  interoperable with the state’s electronic POLST registry using bidirectional  technology, meaning that the systems are coded in a way that they can  seamlessly exchange information with each other. This allows providers  to receive updated POLST forms from the registry upon the individual’s  admission to the hospital. It also updates the POLST forms in the registry  when changes are made in the EHR by the provider in the hospital. The  Oregon officials described another strategy taken within a large health  system in the state, which allows providers to quickly know whether a  patient has an advance directive in an EHR by using a tab in the medical  record indicating that the documents are in the EHR. Stakeholder  organizations identified other strategies for increasing access to  completed advance care planning documents, such as standardizing  information. For example, one national stakeholder organization noted  that advance care planning documents could be in a standardized  location within an EHR to help providers find these documents more  easily.

Another strategy used in our selected states is the use of a health  information exchange to facilitate access to advance care planning  documents. According to a West Virginia stakeholder organization,  using the state’s health information exchange allowed West Virginia to  easily provide authorized individuals with direct access to completed  advance care planning documents—both advance directives and POLST  forms—in its registry.

Officials from state agencies and stakeholder organizations also  developed strategies to improve access to completed advance care  planning documents in their state registries. All four selected states used  registries to facilitate access to completed advance care planning  documents: two states (Idaho and West Virginia) had registries for both  advance directives and POLST forms, one state (California) had an  advance directive registry and was piloting an electronic POLST registry  in two communities, and the remaining state (Oregon) had a POLST  registry. Officials in these states reported strategies to facilitate access  through their registries. Below are examples of these strategies.

California. To test whether partnering with a health information  exchange organization would provide benefits to the state’s POLST  eRegistry uptake and expansion, one of the two California  communities chosen to pilot the POLST eRegistry was led by a health  information exchange. The other community selected for the pilot was  led by a for-profit commercial service. According to a California EMS  official, using the health information exchange allowed advance care  planning documents to be exchanged quickly between ambulances  and hospitals.

West Virginia. West Virginia’s registry used the state-wide EMS  structure, enabling EMS providers to access the information in an  individual’s POLST form while en route to an emergency call. The  medical director at the EMS state office noted that EMS providers  could call one of its five medical command centers, which could  access the registry online to “pre-screen” individuals, to determine if  there was a valid advance care planning document on file. EMS  providers then received the individual’s information from the medical  command center. According to an official involved with the state  registry, authorized individuals—i.e., individuals with a registry-issued  username and password—could also directly view registry  documents.

Oregon. State officials reported using an opt-out strategy for the  submission of POLST forms to the state’s registry to help ensure that  the information in the registry was current. That is, the state has a  legislative mandate for providers to submit all POLST forms to the  state’s POLST registry unless the patient elected to opt out of the  submission. According to Oregon stakeholders, Oregon attributes  the widespread use and adoption of the registry to this strategy. One  article noted that, in Oregon, successful access to POLST forms  through the registry by EMS providers influenced the treatment of  individuals. Oregon officials and stakeholders told us that they have  not experienced many challenges related to administering its POLST  registry and providing access to completed POLST forms, because  they leveraged their existing centralized EMS system and created a  state administered registry that is interoperable and available to all  health systems within the state. Oregon officials stated that the state’s  registry success is largely attributable to the fact that it was designed  to meet the access and workflow needs of both EMS providers in the  field and acute care providers.

At the federal level, to support state registry efforts, in February 2016,  CMS published a State Medicaid Director letter alerting states to the  availability of federal Medicaid funding for the development of and  connection to public health systems, such as registries. A July 2018  report by the Office of the National Coordinator for Health Information  Technology noted that end-of-life care advocacy groups should consider  working with State Medicaid Directors to apply for CMS funding to pilot  POLST registries. According to CMS, as of October 2018, one state,  Louisiana, received approval to fund an electronic registry for advance  directives.

Additional Strategies Used in Selected States Address Resource Needs for Advance Care Planning Registries and the Portability of Documents.

Officials from state agencies and stakeholder organizations in our  selected states discussed the importance of having adequate funding and  staff resources to administer their registries. For example, according to an  Oregon stakeholder organization, dedicated state funding for the state’s  registry allows multiple benefits, such as continuous availability of the  registry for individuals and providers. Oregon POLST officials stated that  in order to ensure access to individuals’ POLST forms between health  systems within a state, they believe POLST registries should be state  funded and administered. According to the Office of the National  Coordinator for Health Information Technology report and a West Virginia  registry official, the state’s registry, which received state-funding from  2009 until 2017, functioned as a central source of information on  individuals’ wishes, which were recorded in documents such as advance  directives and POLST forms and alleviated multiple access issues.  However, officials involved in receiving and providing registry services  reported challenges when the registry did not receive state funding in  2018. As a result, online access to advance directives and POLST forms  through the registry was discontinued. In California, officials involved  with the POLST eRegistry pilot stated that one goal of the pilot project  was to identify potential plans for sustainable funding of a registry.

Regarding acceptance of out-of-state advance care planning  documents—that is, the portability of documents across state lines—we  found that all four selected states have statutes that address the validity  of advance care planning documents executed in another state. To  ensure individuals’ wishes are honored, according to an American Bar  Association official, states need to engage in efforts to develop processes  and protocols that will allow advance care planning documents to be  accepted between states. While the states’ language varies, all selected  states allow use of out-of-state documents. Under Idaho’s statute, out-of- state documents that substantially comply with Idaho’s requirements are  deemed to be compliant with Idaho’s statute. California’s, Oregon’s, and  West Virginia’s statutes note that out-of-state documents executed in  compliance with that state’s laws are valid within their states. For more  information on the states’ statues related to advance care planning, see  appendix IV.

We provided a draft of this report to the Department of Health and Human  Services. HHS provided technical comments, which we incorporated as  appropriate. We also provided relevant information from the draft report to  state officials and stakeholders in each of the four selected states in our  review (California, Idaho, Oregon, and West Virginia), and to one national  stakeholder organization (the National POLST Paradigm), and  incorporated their technical comments, as appropriate.

We are sending copies of this report to the appropriate congressional  committees, the Secretary of Health and Human Services, the  Administrator of the Centers for Medicare & Medicaid Services, the  National Coordinator for Health Information Technology, the National  Institute on Aging, and other interested parties. In addition, the report will  be available at no charge on the GAO website at http://www.gao.gov.

If you or your staff have any questions about this report, please contact  me at (202) 512-7114 or yocomc@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 V.

Appendix I: Information on the Extent to Which Individuals Have Advance Directives

Officials from the National Institutes of Health’s National Institute on  Aging, the Centers for Disease Control and Prevention’s National Center  for Health Statistics, and representatives of national stakeholder  organizations identified specific surveys and a comprehensive national  study of the prevalence of individuals who have completed advance  directives. Table 1 provides information from selected research on the  prevalence of advance directives. Table 2, below, shows the percentage  of individuals age 65 and older responding to the Health and Retirement  Survey who reported having a living will or power of attorney in 2012,  2014, and 2016.

Appendix II: Types of Information Found on a POLST Form

Physician orders for life-sustaining treatment (POLST) forms are different  in each state, and the order of the sections or the options within a section  may differ. However, according to the National POLST Paradigm,  POLST forms cover the same information. Information about the forms,  including sections on cardiopulmonary resuscitation (CPR), medical  interventions, artificially administered nutrition, and signatures, is provided  below.

Section A: Cardiopulmonary Resuscitation

This section only applies when the individual is unresponsive, has no  pulse, and is not breathing. This is similar to a do-not-resuscitate order,  but the individual only has a do-not-resuscitate order when they do not  want CPR. The POLST form allows individuals to clearly show they do  want CPR. If this is left blank, the standard protocol is for emergency  personnel to provide CPR if medically indicated. (See fig. 3.)

This section gives medical orders when CPR is not required, but the  individual still has a medical emergency and cannot communicate. There  are three options and a space for a health care professional to write in  orders specific for the individual. Care is always provided to individuals.  This section is for letting emergency personnel know what treatments the  individual wants to have. (See fig. 4.)  1.  Full treatment. The goal of this option is to provide all treatments  necessary (and medically appropriate) to keep the individual alive. In  a medical emergency, individuals want to go to the hospital and, if  necessary, be put in the intensive care unit and on a breathing  machine.  2.  Limited treatment / select treatment. The goal of this option is to  provide basic medical treatments. These individuals want to go to the  hospital, but do not want to be put in the intensive care unit or on a  breathing machine. They are okay with antibiotics and intravenous  fluids.  3.  Comfort measures only. The goal of this option is to focus on  making the individual as comfortable as possible where they are.  These individuals do not want to go to the hospital. If the individual’s  comfort cannot be taken care of where they are, transfer to the  hospital may be necessary.

According to the National POLST Paradigm, in many states, if an  individual chooses CPR—or leaves Section A blank—the individual is  required to choose “Full Treatment” in Section B. This is because CPR  usually requires intubation and a breathing machine, which are only  options under “Full Treatment.” If an individual has a medical emergency,  but does not want CPR, this is the section emergency personnel will look  at to see whether the individual wants to go to the hospital or not (for Full  Treatment and Limited Interventions: yes; for Comfort Measures Only:  no). If the individual only has a do-not-resuscitate order, emergency  personnel would take them to the hospital.

Section C: Artificially Administered Nutrition

This section is where orders are given about artificially administered  nutrition (and in some states artificially administered hydration) for when  the individual cannot eat. All POLST forms note that individuals should  always be offered food by mouth, if possible. (See fig. 5.)

Health care professional. Since this document is a medical order, a  health care professional is required to sign it in order for it to be valid.  Which health care professionals can sign (e.g., physician, nurse  practitioner) varies by state. The document has a statement saying  that, by signing the form, the health care professional agrees that the  orders on the document match what treatments the individual said  they wanted during a medical emergency based on their current  medical condition.

Patient or surrogate. According to the National POLST Paradigm,  most states require the patient or the surrogate to sign this form. This  helps to show the patient or surrogate was part of the conversation  and agrees with the orders listed on the form.

The backside of the POLST form has directions and information, usually  for health care professionals. Other information it may have includes  information on how to void a POLST form;  contact information for surrogates; and  information on who completed the POLST form.

Appendix III: Information on CMS’s Promoting Interoperability Programs Related to Advance Care Planning Documents

This appendix provides information about incentive programs provided by  the Centers for Medicare & Medicaid Services (CMS) to encourage  providers to use electronic health records related to advance care  planning documents. CMS provided incentive payments to eligible  providers who reported certain measures through its Medicare electronic  health records (EHR) Incentive Program (meaningful use program), which  started in 2011. At certain points in the program, measures related to  advance care planning were optional measures. In 2017, eligible  professionals (physicians) began reporting “promoting interoperability”  measures through the Merit-based Incentive Payment System (MIPS).

The American Recovery and Reinvestment Act of 2009 established the  Medicare and Medicaid EHR Incentive Program. This program provided  incentive payments for certain eligible providers—certain hospitals and  physicians—that successfully demonstrated meaningful use of certified  EHR technology and met other program requirements established by  CMS. The program was implemented in three stages—measures were  established at each stage to promote the use of EHRs in the delivery of  health care and to ensure that providers capture information in their EHRs  consistently. For example, one measure assessed whether providers  have the technical capability in their EHRs to notify the provider of  potential interactions among the patients’ medications and with patients’  allergies. In all three stages of meaningful use, providers had to report  certain mandatory or core measures, as well as on a set of optional or  menu measures.

The recording of advance directives was not included as a mandatory  measure for eligible providers during any stage of meaningful use. For  stages 1 and 2 of meaningful use (2011 through 2015) the recording of  advance directives was an optional measure, meaning hospitals could  choose to report it or could choose to report a different measure. This  optional measure for eligible hospitals was a yes/no measure of whether  users could record whether a patient has an advance directive. In  October 2015, CMS released the stage 3 final rule that also modified  elements of stage 2 reporting; this modification eased reporting  requirements and aligned them with other quality reporting programs,  according to agency officials. For both modified stage 2 and stage 3  (2015 through 2017), the original advance directive measures were no  longer included. CMS noted that a goal for stage 3 measures was to  include more advanced EHR functions, and one stage 3 measure  addressed capturing and incorporating a broad range of data into the  EHR, including advance directives.

One national stakeholder organization recommended a measure to  ensure that if there are any advance care planning documents in the  medical record, that the documents be accessible to all health care  providers. CMS noted that advance care planning directives can be  included in the notes and is addressed by certification requirements  applicable to EHRs. Participants in these CMS programs must use  certified EHR technology, which is technology that has been determined  to conform to certification criteria developed by the Department of Health  and Human Services’ Office of the National Coordinator for Health  Information Technology. The 2015 certified EHR technology criteria—the  most recent edition—includes a criterion that relates to advance care  planning documents.

The Medicare Access and CHIP Reauthorization Act of 2015 established  the Quality Payment Program, which consolidated components of three  previously used payment incentive programs, including the Medicare  EHR Incentive Program, into MIPS. Under the MIPS program, which  affects clinician payments beginning in 2019, participating clinicians will  generally be assessed in four areas, one of which is the “promoting  interoperability” performance category that aims to achieve the same  objectives as the original meaningful use program. MIPS-eligible  clinicians report measures and activities to earn a score in the  performance categories. Under the “improvement activities” performance  category, one optional activity—advance care planning—covers items  such as implementation of practices or processes to develop advance  care planning that includes documenting the advance care plan or living  will, and educating clinicians about advance care planning. Clinicians who  meet the criteria for this activity can report this advance care planning  activity to earn credit for the “improvement activities” performance  category. Further, the advance care planning activity could earn bonus  points in the “promoting interoperability” category, if the activity was  conducted using certified EHR technology in 2017 and 2018.

Appendix IV: Selected State Statutes Related to Advance Care Planning Documents

Our four selected states—California, Idaho, Oregon, and West Virginia— had statutes with similar provisions that affected access to advance care  planning documents; however, the statutes differed in the specificity of  these provisions. This appendix provides information on provisions  related to (1) document execution requirements, such as signature and  witness requirements; (2) the validity of other advance care planning  documents; (3) provider objections to advance care planning directions;  and (4) provider liability protections.

Statutes in the four selected states required advance care planning  documents to contain specific elements for the documents to be valid.  The document requirements included the following:

Signature requirements. All four selected states required individuals  or designated representatives to sign the advance care planning  document for the document to be legally valid. In addition, California  allows individuals to sign the documents with a digital signature.

Witness requirements. Three of the states (California, Oregon, and  West Virginia) have statutes that require at least one witness to be  present during the completion of advance care planning documents  for that document to be legally valid. These states varied regarding  the relationship the witness could have with the individual and number  of required witnesses. For example, for advance care planning  documents that were signed by witnesses, California required that at  least one of the witnesses not be related to the individual by blood,  marriage, or adoption, nor be entitled to any portion of the individual’s  estate upon the individual’s death under an existing will. In contrast,  according to state officials in Idaho, the state removed witness  requirements from its advance care planning documents in 2012 to  make the documents easier to complete.

Format of Advance Care Planning Documents

All four selected states’ statutes contained model forms that could be  used as a valid advance care planning document. All of the states  contained provisions regarding the acceptance of documents other than  the forms set out in statute. A document other than the model form is  valid if it includes required statutory elements (e.g., signature  requirements). For example, in Idaho, the document must be substantially  like the model form or contain the elements laid out in the statute. In  Oregon, the advance directive statute states that, except as otherwise  provided, Oregon residents’ advance directives must be the same as the  statutory model form to be valid.

Provider Objections to Advance Care Planning Directions

All four selected states’ advance care planning statutes had provisions  related to provider objections—the statutes address situations in which  the provider is unable or unwilling to comply with advance care planning  directions. However, the statutes varied on the grounds for provider  objection, the required steps to be taken, and the extent to which  providers were responsible for taking those steps. For example,  California’s and Idaho’s statutes allow providers to object on ethical and  professional grounds; and California’s, Idaho’s, and West Virginia’s  statutes allow providers to object on reasons of conscience. In addition,  the four states’ statutes specified the steps that providers or health  systems must take after an objection is made. For example, all four  selected states require that specified steps be taken with regard to  transferring the individual to a provider that will honor their wishes.  Further, California and Oregon explicitly require patient or health care  representative notification as soon as provider objections are made.

All four states also had statutes that addressed the circumstances under  which providers would not be subject to civil or criminal liability, or  professional disciplinary action with regard to administering advance care  planning documents and directions. The states’ statutes varied with  regard to the actions that were covered under these liability provisions.  For example, California’s statute addresses situations in which a provider  or institution either complied with or objected to the directions provided in  advance care planning documents, while Idaho’s, Oregon’s, and West  Virginia’s statutes only addressed situations in which providers and other  parties complied in good faith with the directions.

Appendix V: GAO Contact and Staff Acknowledgments

In addition to the contact named above, Kim Yamane (Assistant Director),  Shirin Hormozi (Analyst-in-Charge), Leia Dickerson, Drew Long, Ian P.  Moloney, Monica Perez-Nelson, and Vikki Porter made key contributions  to this report.

In a medical emergency, do you want CPR, a feeding tube, or other life-sustaining treatment?

You can plan for what you want (or don't want) using documents such as:

Advance directives—living wills and health care power of attorney—to document your health care wishes

Physician orders for life-sustaining treatment to document end-of-life treatment orders if you're seriously ill

If you have these documents, doctors and emergency techs may not know they exist or be able to find them. And many people don't have them.

Some states are educating health care providers and patients and maintaining document registries to address these issues.