From 1997 to 2003, the Robert Wood Johnson Foundation (RWJF) funded a national program called Community-State Partnerships to Improve End-of-Life Care. The program supports the work of state-based commissions and task forces to identify and implement changes in policy and practice to improve care for terminally ill patients and their families.

Groups that received funding formed state and local coalitions with other organizations interested in working on end-of-life care policies, and secured matching funding equal to one-third of their RWJF grant. A total of 24 applicants received grants.

RWJF's Board of Trustees authorized up to $11.25 million in funding for the program in 1997. The Midwest Bioethics Center of Kansas City, Mo., served as the national program office.

Key Results
In furthering statewide projects, site staffs:

• Worked with hospitals and nursing homes to improve the care of dying patients.
  • Seven sites (California, Hawaii, Kansas, Kentucky, Michigan, North Carolina and Rhode Island) provided some form of training for hospital staffs and administrators in addressing the needs of dying patients and improving the quality of their treatment.
  • Sites in Rhode Island, California and North Carolina similarly educated administrators and staff at nursing homes.
    • In 2000, the Rhode Island project, Improving Quality of Care for Our Most Vulnerable Population, convinced 21 nursing homes to form continuous quality-improvement teams. Findings from a pre- and post-intervention study of the Rhode Island work showed a nearly tenfold increase in the rate of comprehensive assessment of pain among these nursing homes during the project's three-year span. Each nursing home developed pain policies and procedures, which included medication management and the use of non-drug interventions.
• Worked with project partners to provide or improve education about palliative care to professionals in training and practice. The audiences for this professional education fell into two groups: the academic community including students and faculty; and the practicing professional community who require continuing education.
  • Fourteen sites sponsored training for physicians, nurses and pharmacists using a nationally recognized end-of-life care curriculum. These professionals in turn trained their colleagues.
  • Beginning in 2001, the DC Partnership to Improve End-of-Life Care facilitated the training of 16 physicians in the American Medical Association's Educating Physicians on End-of-Life Care (EPEC) project. The EPEC project, though it does not confer continuing education credits, is designed to educate physicians on clinical competencies required to provide quality end-of-life care.
• Worked with project partners to increase demand for and access to quality end-of-life care. Staff held community meetings, focus groups and developed materials for health professionals and the general public to educate and excite them about the need for better care at the end of people's lives, such as palliative care and advance care planning.
  • The Oklahoma Alliance for Better Care of the Dying spurred interest in its work by creating a Palliative Care Week each April that grew to include 70 communities between 1999 and 2002.
  • In six states, legislatures enacted laws requiring new or increased reimbursement for hospice care under Medicaid (Florida, Hawaii, Maine, Nevada, New Jersey and West Virginia).
  • In two states, lawmakers passed legislation that required that all insurers to cover hospice (Maine and New York).
• Held activities to improve advance care planning. Project partners distributed educational materials (which sometimes included advance directives such as living wills and medical power of attorney forms) to patients and others, and helped in efforts to simplify state law regarding advance care planning. Project directors realized that not only the general public but also health care professionals are often confused about the purpose of and process for advance care planning. As a consequence:
  • About a dozen statewide projects led education efforts in the need for advance care planning and provided advance directive forms (to be included in medical records) and assistance to patients in filling them out.
  • At least six statewide projects also provided information that helped legislators as they developed policy changes designed to simplify and remove conflicting provisions from legislation and regulations governing advance directive completion.
• Aided those in public policy to encourage physicians to prescribe needed pain medication. Participants in statewide projects helped educate legislators about the importance of requiring professional education on pain control.