Public Policy
Convinced lawmakers to include a new category of people to be
protected from losing their physician when managed care shifts
contracts. We have arranged to have people with "serious and complex
illness" or "serious and eventually fatal chronic illness" protected
in the proposed Patient Bill of Rights.
Testified before the Senate Special Committee on Aging and before the Quality Interagency Coordination Task Force (QuiC). As a result, the QuIC and the Agency for Healthcare Quality and Research made end-of-life care a research priority, for the first time ever.
Worked with Health Care Financing Administration officials to shape the upcoming risk adjustment in Medicare managed care so that payments adequately cover patients with advanced disease.
Organized a day-long forum with cardiologists and regulatory staff (held in conjunction with the American Heart Association) to identify and promote policies to improve care for people with advanced heart disease.
Public and Professional Education
Participated in developing the Bill and Judith Moyers’ series, On
Our Own Terms, in which ABCD’s position on health care reform
anchored the closing segments.
Sponsored a special Kennedy Center performance of W;t, the Pulitzer-prize winning play. Cosponsored two receptions, including an after-show question and answer session attended by over 500 theatergoers.
Enhanced our on-line resources, including a referral engine that puts professionals in touch with helpful resources; TIME Magazine hailed our website as being "authoritative and fact-filled." (Sept. 18 2000).
Posted excerpts from The Handbook for Mortals (our book for the public) and Improving Care for the End of Life (our quality improvement resource for health care providers) on our website.
Outreach and Quality Improvement
Sponsored "Closing the Circle: Infusing End-of-Life Care into the
Nursing Curriculum," a program for nursing educators in the
Washington-Baltimore region. Helped to write the new national
curriculum for nurses/ education in end of life care (ELNEC).
Convened briefings for advocates and policymakers in Washington, aiming to help them understand end-of-life issues and to help us create policy reform opportunities.
Provided hundreds of referrals to the media, researchers, and motivated clinicians, all aiming to build the field of end-of-life care and to catalyze change.
Ours is a small organization—but our dedicated staff, activist members, and good ideas give us legitimacy. We are thankful for having had so many successful endeavors this year, and we are excited about what remains to be done.