Skip Navigation
Policy Innovation Profile

Legislatively Mandated, Permanent Council Serves as Effective Catalyst for Sustained Progress on End-of-Life Policy Issues in Maryland


Tab for The Profile
Comments
(0)
   

Snapshot

Summary

Authorized as an independent, permanent government entity by the Maryland General Assembly, the Maryland State Advisory Council on Quality Care at the End of Life takes responsibility on an ongoing basis for data gathering, policy analysis, advocacy, and education related to end-of-life policy issues. Made up of a diverse group of volunteer members, the council identifies priority areas, sets up smaller subcommittees and workgroups to tackle them, and periodically reviews and elicits feedback on these efforts. The council has no formal regulatory or policymaking authority, but rather focuses on offering advice and guidance to those who do. Since its formation in 2002, the council has served as an enduring mechanism to ensure that discussion and movement on key end-of-life issues (even controversial ones) do not stall over time, and has been an effective catalyst for concrete progress in many of its identified priority areas.

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation examples of how council activities have contributed to concrete accomplishments related to policymaking on end-of-life care issues in Maryland.
begin do

Developing Organizations

Maryland Department of Aging; Maryland General Assembly; Maryland Office of the Attorney General
end do

Use By Other Organizations

Massachusetts has created a similar type of council, and West Virginia has a university-based educational and resource center related to palliative care that receives support from the State legislature. Other states have created time-limited groups authorized by executive order, such as Michigan’s Commission on End of Life Care. Some States have set up nongovernmental coalitions focused on palliative care, such as the California Coalition for Compassionate Care.7

Date First Implemented

2002
The bill authorizing the council passed the Maryland General Assembly in 2002. The council first convened in April 2003.begin pp

Patient Population

Vulnerable Populations > Terminally illend pp

Problem Addressed

State policies can either facilitate or be a barrier to the provision of effective, compassionate end-of-life care. In some cases, multiple entities take responsibility for advising on or crafting these policies, creating the potential for confusion, conflict, and duplication of effort. To address this problem, some States create advisory panels or similar entities to coordinate policies, but such initiatives often end up operating for only a defined period of time. However, the complex, multifaceted nature of end-of-life policy issues typically requires a permanent body that can address issues on a sustained basis, without artificial deadlines.
  • Importance of State laws and policies: Advocates with diverging opinions on end-of-life care generally agree that State legislatures and courts can have a significant impact on the nature and quality of such care. In fact, several major initiatives focused on improving end-of-life care have identified governmental and institutional policies, including State policies on advance directives and pain management, as a priority area.1,2,3
  • Potential for confusion, duplication, and conflict: In many States, multiple entities or coalitions (some of which may be ad hoc in nature) work on end-of-life care policies, and these organizations may or may not effectively coordinate or communicate with each other. For example, in Maryland, a comprehensive 1993 law covering advance directives, default surrogate decisionmaking, and medical futility stemmed from the melding of work from two separate, informally constituted groups.4,5 Lack of coordination can create the potential for confusing, duplicative, or conflicting policies and regulations.
  • Inadequacy of time-limited bodies to coordinate policies: Some States have created advisory panels or other entities to coordinate and oversee policies related to end-of-life care, with most such entities being time-limited in nature (i.e., slated to end their activities by a defined date) or dependent on periodic reauthorizations and funding renewals from an external party. For example, after passage of the 1993 legislation, the Maryland Attorney General convened an advisory panel in collaboration with Johns Hopkins University to evaluate the law’s impact, using support from a foundation grant.6 Although the group proved effective in facilitating useful dialogue among diverse stakeholders, its continued existence depended on maintaining the interest of the incumbent attorney general and the ongoing availability of grant funding. However, the complex, multifaceted nature of end-of-life policy issues typically requires a permanent body that can address these issues over time, without artificial deadlines.

What They Did

Back to Top

Description of the Innovative Activity

Authorized as an independent, permanent government entity by the Maryland General Assembly, the Maryland State Advisory Council on Quality Care at the End of Life takes responsibility on an ongoing basis for data gathering, policy analysis, advocacy, and education related to end-of-life policy issues. Made up of a diverse group of volunteer members, the council identifies priority areas, sets up subcommittees and workgroups to tackle them, and periodically reviews and elicits feedback on these efforts. The council has no formal regulatory or policymaking authority, but rather focuses on offering advice and guidance to those who do. Key components of the council are outlined below:
  • Diverse membership, appointed by governor: The legislation specifies the categories of members to serve on the council (as depicted in the subbullets below). It also gives the governor the authority to appoint those who meet these requirements and designate the chairperson.7
    • State government representatives: The council includes one representative each from the following Maryland governmental bodies: Office of the Attorney General, the State Senate, the House of Delegates, the Department of Aging, the Department of Health and Mental Hygiene, and the Department of Disabilities.
    • Health care professionals and facility representatives: The statute requires that council membership include a physician, nurse, and pharmacist with end-of-life care experience; a physician and nurse with long-term care experience; and one representative each from the hospice, hospital, and nursing home settings.
    • Other representatives: The statute requires the council to include two representatives from advocacy groups for end-of-life care, two members of the general public with experience with end-of-life care, two representatives from religious groups, a lawyer, and one representative each from an insurer and managed care organization.
  • Defined statutory responsibilities: The legislation specifies the statutory responsibilities of the council, which focus on data collection and analysis, advocacy (i.e., guidance and recommendations to those with legislative and regulatory responsibilities), and education, as outlined below:7
    • Data gathering and analysis: The council monitors trends in the provision of care to Marylanders with life-limiting illnesses and studies the impact of State law and policy on end-of-life care.
    • Advocacy (but no regulatory or policymaking authority): The council provides recommendations to executive branch agencies about activities affecting end-of-life care and advises the State legislature on bills affecting such care. The council has no authority to make regulations or policies on its own.
    • Education: The council promotes public and professional education on end-of-life issues, often in collaboration with other stakeholders.
    • Other duties as requested: As they see fit, the governor and State legislature have the authority to request that the council carry out other duties.
  • Activities to meet these responsibilities: To fulfill its statutory responsibilities, the council meets regularly to discuss legislative and regulatory policy proposals and to identify, discuss, or develop action steps related to high-priority areas. Within each area, the council sets up subcommittees and workgroups comprised of council members and representatives of key stakeholders. These smaller bodies work between meetings to move discussions and action steps forward. As necessary, the council convenes larger summits to get input from a wider array of stakeholders. More details on each of these major activities are provided below:7
    • Regular meetings to discuss proposals, identify priorities and related action steps: The council meets at least four times a year, typically twice during Maryland’s legislative session (January to April) and then again in late spring and fall. During these 2-hour sessions, council members discuss relevant legislative and regulatory proposals, with the goal of providing recommendations and guidance to the legislature or agencies responsible for implementing policies and regulations. These meetings also serve as an opportunity to identify or discuss key priority areas for the council, including developing concrete action steps for each. For example, at its first few meetings, facilitator-led discussions identified two major priority areas for the group as a whole—end-of-life care planning/advance directives and better serving vulnerable populations—along with recommended action items within each, as outlined below:
      • End-of-life care planning and advance directives: The council identified the following high-priority action items:
        • Identify legal/ethical barriers to integrating palliative care into ongoing clinical care.
        • Develop model policies and procedures for systemic improvement in facilities’ end-of-life care.
        • Draft a more user-friendly advance directive form.
        • Conduct a public education campaign on advance care planning.
        • Find a means of distributing the Five Wishes form, which lets family members and physicians know key issues related to end-of-life care.
        • Develop materials to support workplace initiatives on advance care planning.
        • Develop a Maryland version of the Physician Orders for Life-Sustaining Treatment (more commonly known as POLST) form.
      • Improving end-of-life care for vulnerable populations: The council identified the following high-priority action items:
        • Assess pediatric palliative care services in Maryland.
        • Gather demographic data on use of hospice services by pediatric and adult patients.
        • Assess advance care planning in minority communities.
        • Collect data on Medicaid reimbursement and hospice use in nursing homes.
        • Identify approaches to improve care for terminally ill foster children.
        • Identify the particular needs of patients with dementia and their family caregivers.
  • Ad hoc committees and workgroups to move forward on priority areas: As necessary, the council forms subcommittees and workgroups to tackle priority areas and move action items forward. Consisting of council members and others who represent key stakeholder groups, these small groups use e-mail, conference calls, and other forms of communication to draft and review relevant work products and otherwise move issues forward between council meetings. Examples include the following:7
    • Ethical framework to address legal and ethical barriers to palliative care: A subgroup of council members took charge of drafting an ethical framework that was subsequently vetted by other council members and reviewed by key external stakeholders at formal council meetings and a larger summit. (More information on this summit appears below.) The subgroup revised the framework based on the feedback received.
    • User-friendly advance directive form: In collaboration with an assistant attorney general, a subgroup of council members drafted proposed changes to the existing advance directive form specified in the Maryland Health Care Decisions Act. As with the ethical framework, the changes were reviewed by other council members and vetted by key external stakeholders at a larger summit. After the form had been accepted, council members and key partners communicated its availability to clinicians and the public at large through educational sessions and other vehicles.
    • POLST: A subgroup of the council members worked with other key stakeholders (including representatives from emergency medicine, the Maryland Department of Health and Mental Hygiene, and the Maryland Board of Physicians) over a period of two years to come to consensus on the need for a Maryland version of the POLST form, its contents, and the obligations surrounding its use.
    • Pediatric palliative care: As part of a meeting on pediatric palliative care sponsored by Johns Hopkins, a subgroup of council members explored issues raised at the meeting (and the report that came out of it) with key stakeholders.
  • As-necessary larger meetings with key stakeholders: As necessary, the council periodically convenes larger “stakeholder summits” in which a more diverse group of individuals gather to discuss issues and formulate recommendations. These sessions also serve as a means to educate various constituencies, including the general public. To date, two such summits have been held. The first brought together 50 individuals from a broad range of health care, legal, disability rights, consumer, and religious organizations to discuss various topics and give feedback on the draft ethical framework and a proposed “patient plan of care” form. The second session, attended by 40 individuals with similarly diverse backgrounds, focused on developing action plans to improve palliative care for children with life-threatening conditions and patients with dementia.7

Context of the Innovation

Consisting of the State Senate and the House of Delegates, the Maryland General Assembly is responsible for debating and passing statewide legislation in Maryland. The Maryland Attorney General is the chief legal officer of the State, and the Office of the Attorney General oversees and directs the legal business of the State, and acts as a legal adviser to and representative of the major departments, boards, commissions, officials, and institutions of State government. The Maryland Department of Aging protects the rights and quality of life of older persons in Maryland, administering programs for them throughout the state, primarily through local area agencies on aging.

The impetus for this program came from the Maryland Office of the Attorney General and from members of an ad hoc advisory panel convened after enactment of Maryland’s comprehensive 1993 law on advance directives, default surrogate decisionmaking, and medical futility. Although an effective mechanism for evaluating the law’s impact and facilitating respectful discussions among key stakeholders, this panel periodically faced threats to its continued existence, which depended on the ongoing interest of the attorney general and the availability of grant funding to finance operations. Recognizing that the complex nature of end-of-life policy issues required continued attention over time, the attorney general (who strongly supported the panel) and panel members themselves began evaluating various options to ensure a more durable existence. They considered lobbying the governor to establish a panel by executive order, but rejected that approach because such orders can be revoked as easily as they are issued. Instead, they chose to pursue creation of a permanent body through legislation.

Did It Work?

Back to Top

Results

The council has served as an enduring mechanism to ensure that discussion and movement on key end-of-life issues (even controversial ones) do not stall over time and has been an effective catalyst for concrete progress in many of its identified priority areas.
  • Mechanisms to move issues (even controversial ones) forward: As a formal, permanent body that cannot be terminated without legislative action, the council has been able to ensure that coordinated discussion and movement on end-of-life issues, even controversial ones, continues to occur. For example, in 2009 a bill introduced in the Maryland legislature would have required health care practitioners to provide counseling about end-of-life issues whenever a patient was diagnosed with a terminal illness. The proposal created significant controversy, leading the legislature to table the debate and instead form a time-limited workgroup of different stakeholders to prepare a report. In the absence of the council, movement on the issue might have ended once the report came out and the group disbanded. Instead, the council formally endorsed and adopted the report and its recommendations, and is now actively working to get them implemented.
  • Concrete progress in many priority areas: Over the last decade, the council has been a catalyst for concrete progress in many of its identified priority areas, as outlined below:7
    • Established ethical framework in place: The council’s role as a catalyst in this area has led to the development of an ethical framework that assists nursing homes, assisted living facilities, hospitals, and others on an ongoing basis in adopting policies and procedures to promote high-quality end-of-life care.8
    • Easily available, user-friendly advance directive form: Thanks in large part to the efforts of the council, a new user-friendly advance directive form is available on the attorney general’s Web site that allows individuals to choose how they wish their surrogates to interpret their preferences for life-sustaining therapies. This form also served as a platform for development of a manual that nursing home administrators regularly use and a document that guides health care agents in their role as surrogate decisionmakers.
    • Legislation authorizing new version of POLST: The council’s advocacy efforts played a key role in convincing the Maryland legislature to pass a law in the fall of 2011 calling for development and mandatory use of a Maryland version of POLST. As described earlier, the council then worked with other key stakeholders to develop this version, which is known as Medical Orders for Life-Sustaining Treatment (MOLST). Nursing homes, hospitals, assisted living programs, hospice agencies, home health agencies, kidney dialysis centers, and other facilities that treat frail patients now routinely have this form available and discuss it with patients so that they can document their wishes as formal medical orders.9
    • Legislative mandate for report on pediatric palliative care: The council succeeded in its efforts to get the State legislature to mandate creation of a formal report to assess pediatric palliative care services in the state. Developed by the council and the Maryland Health Care Commission, the report was submitted in January 2008,10 and the council is working to promote implementation of its key recommendations.

Evidence Rating (What is this?)

Suggestive: The evidence consists of post-implementation examples of how council activities have contributed to concrete accomplishments related to policymaking on end-of-life care issues in Maryland.

How They Did It

Back to Top

Planning and Development Process

Key steps included the following:
  • Garnering support: During the first part of 2002, the Office of the Attorney General held a series of meetings with interested stakeholder groups and legislators, advocating for creation of a permanent, independent advisory commission.
  • Enacting legislation: In 2002, the Maryland General Assembly passed legislation authorizing creation of the council, which officially formed in October of that year.
  • Recruiting and approving members: The Office of the Attorney General spearheaded the effort to recruit the initial group of members, in many cases drawing from individuals who had served on other bodies (both existing and disbanded) focused on end-of-life care issues, including several workgroups, panels, and committees. As noted, the governor approved all initial appointments and continues to approve appointments as new members join the council.

Resources Used and Skills Needed

  • Staffing: The program required no new hiring, as staff within the Maryland agencies required to support the council provide this assistance as part of their regular job responsibilities. An assistant attorney general serves on the council and helps coordinate its activities, spending approximately 5 to 10 percent of his time on program-related activities. An administrative person within the Maryland Department of Aging spends a small amount of time helping with these activities.
  • Costs: The program has no formal budget or expenses.
begin fsxml

Funding Sources

As required in the authorizing legislation, the Maryland Department of Aging and the Maryland Office of the Attorney General provide in-kind staff support and technical assistance to the council, which receives no appropriated funds from the Maryland General Assembly.end fs

Tools and Other Resources

More information on the Five Wishes form is available at: http://www.agingwithdignity.org/five-wishes.php.

Adoption Considerations

Back to Top

Getting Started with This Innovation

  • Seek permanent, independent status: The effectiveness of the council is driven in large part by its permanent status as an independent government entity. As such, it cannot be disbanded by one individual, such as the governor or an agency head.
  • Position as adviser, not policymaker: The council’s effectiveness also stems in part from its formal role as an adviser to legislators and regulators, providing guidance and recommendations without having formal policymaking authority. As a result, key stakeholders, including the leaders of regulated entities, respect the council’s independence and are more inclined to engage in its discussions and activities.
  • Weigh merits of formal funding: While any entity needs access to ongoing sources of in-kind support, the merits of having a formal, authorized budget are less clear. Although the funds that such budgets provide may make it easier to execute activities, budgets can be used to politicize issues and be cut or eliminated relatively easily. A better strategy might be to approach key stakeholders, such as hospitals, hospice organizations, professional societies, or universities, about providing ongoing staffing support for various activities, including data collection, policy and financial analysis, and education.
  • Consider appropriateness of narrow focus: The council focuses narrowly on end-of-life care, and this narrow charter has helped to shape a manageable working agenda that has resulted in significant progress in many priority areas. However, the term “end-of-life care” can evoke strong emotions, with the potential for backlash. Consequently, in some states, it may make sense to focus more generally on “palliative care,” a broader concept that emphasizes maintaining and improving quality of life through management of symptoms, even for those not at the end of life. The Coalition to Transform Advanced Care is promoting this approach by developing broader concepts and language.11

Sustaining This Innovation

  • Partner with others on education: Although the two stakeholder summits proved helpful in raising awareness, more work is needed in engaging the broader community. Hospitals, medical societies, State and local agencies, universities, and others might be willing to design or cosponsor educational events designed to raise awareness, particularly among racial and ethnic minorities and persons with disabilities.
  • Align meeting schedule with legislative sessions: As a deliberative body that usually meets four times a year, the council faces an ongoing challenge in providing timely input on time-sensitive issues, such as pending legislation. To address this problem, the council holds 2 of its 4 meetings each year during the 3-month window when the Maryland General Assembly is in session. These two meetings provide an opportunity for the council to weigh in on a timely basis on key legislative proposals being debated during the current session. However, even with this schedule, the council is often not able to convene during “crunch” periods that inevitably arise during debate about certain legislative proposals. To address this problem, the council provides as much input and feedback as possible in advance, and sometimes dispatches individual council members who understand and can effectively articulate the council’s positions to meet with legislators during these crunch periods.

Use By Other Organizations

Massachusetts has created a similar type of council, and West Virginia has a university-based educational and resource center related to palliative care that receives support from the State legislature. Other states have created time-limited groups authorized by executive order, such as Michigan’s Commission on End of Life Care. Some States have set up nongovernmental coalitions focused on palliative care, such as the California Coalition for Compassionate Care.7

More Information

Back to Top

Contact the Innovator

Paul Ballard
Assistant Attorney General
Counsel for Health Decisions Policy and the Office of Health Care Quality
300 West Preston Street, Suite 302
Baltimore, MD 21201
(410) 767-6918
E-mail: paul.ballard@maryland.gov

Innovator Disclosures

Mr. Ballard reported no financial or business/professional relationships related to the work described in this profile.

References/Related Articles

Rushton CH, Schwartz J. A legislatively mandated council: a model for palliative care policy integration. J Palliat Med. 2011;14(11):1240-45. [PubMed]

Footnotes

1 Aulino F, Foley K. The project on death in America. J Royal Soc Med. 2001;94:492-5. [PubMed]
2 Last Acts. Means to a better end: a report on dying in America today. Princeton (NJ): The Robert Wood Johnson Foundation; 2002 Nov. Available at: https://folio.iupui.edu/bitstream/handle/10244/469/meansbetterend.pdf?sequence=2 (If you don't have the software to open this PDF, download free Adobe Acrobat ReaderĀ® software External Web Site Policy.).
3 The Robert Wood Johnson Foundation. Community-state partnerships to improve end-of-life care: grant results report. Princeton (NJ): The Robert Wood Johnson Foundation; 2004 Oct. Available at: http://www.rwjf.org/content/dam/farm/reports/program_results_reports/2004/rwjf69596.
4 Byrnes JC. The Health Care Decisions Act of 1993. U Baltimore Law Rev. 1994;23:1-70.
5 Hoffmann DH. The Maryland Health Care Decisions Act: achieving the right balance? Maryland Law Rev. 1994;53:1064-130.
6 Fillmore R. Hopkins and state team up on bioethics. Johns Hopkins Gazette. 1997 Jun 23. Available at: http://www.jhu.edu/gazette/aprjun97/jun2397/bioeth.html.
7 Rushton CH, Schwartz J. A legislatively mandated council: a model for palliative care policy integration. J Palliat Med. 2011;14(11):1240-5. [PubMed]
8 Maryland Attorney General. State Advisory Council on Quality Care at the End of Life. Available at: http://www.oag.state.md.us/Healthpol/SAC/.
9 Maryland Attorney General. Advance Directives. Available at: http://www.oag.state.md.us/Healthpol/AdvanceDirectives.htm.
10 Maryland Attorney General. State Advisory Council on Quality Care at the End of Life: Reports and Correspondence. Available at: http://www.oag.state.md.us/Healthpol/SAC/reportsCor.htm.
11 Krakauer R. Invictus: increasing patient choice in advanced illness and end-of-life care. Front Health Serv Manage. 2011;27(3):43-8. [PubMed]
Comment on this Innovation

Disclaimer: The inclusion of an innovation in the Innovations Exchange does not constitute or imply an endorsement by the U.S. Department of Health and Human Services, the Agency for Healthcare Research and Quality, or Westat of the innovation or of the submitter or developer of the innovation. Read more.

Original publication: December 18, 2013.
Original publication indicates the date the profile was first posted to the Innovations Exchange.

Last updated: December 18, 2013.
Last updated indicates the date the most recent changes to the profile were posted to the Innovations Exchange.