Disease Management

Americans for Better Care of the Dying goals are to: build momentum for reform; explore new methods and systems for delivering care; and shape public policy through evidence-based understanding.

Every dying person needs to be able to count on excellent care. Americans for Better Care of the Dying (ABCD) aims to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs. ABCD works with the public, clinicians, policymakers, and other end-of-life organizations to make change happen.

ABCD President Joanne Lynn, MD is one of the foremost national leaders in this movement and the author of Handbook for Mortals: Guidance for People Facing Serious Illness; and Improving Care for the End of Life. Extensive excerpts from both of these books are accessible via the ABCD website

Circle of Cancer presents numerous links to cancer related information with emphasis on type specific sites, clinical trials, self-help info etc. Mixes private sector and public sector resources for comprehensive one-stop access point.

Circus of Cancer-Breast Cancer Support
A how-to site to help you step right up when a friend has breast cancer. From the heart info includes: Upon first hearing the news; boosting her spirits, helping her family, supporting chemo treatments, talking to your friend, for her husband or other partner, great sites for small gifts, pink ribbons. Kelly Corrigan, initiator Circus of Cancer, first diagnosed with Stage 3 breast cancer in August 2004, and Nan Davenport, designer who together with Kelly has made educational software for kids and teachers since 1999.

Kaiser Permanente Santa Rosa Medical Center provides this site to inform seniors and their caregivers about classes and resources of value. Programs are generally open to the community-at-large and include support groups for diabetes and classes concerning mental health, advance care planning, wellness through life’s end, managing ongoing conditions and many others. A link to the Kaiser Santa Rosa education catalogue is also provided along with links to area hospices and senior resources.

The National Alliance for Caregiving was created to conduct research, do policy analysis, develop national programs and increase public awareness of family caregiving issues. The Alliance’s mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients. Established in 1996, NCA is a non-profit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.

Promises to Keep: Changing the Way We Provide Care at the End of Life published by the National Coalition on Health Care and The Institute for Healthcare Improvement. in October, 2000. This report presents the stories of institutions and organizations that made a commitment to change and innovation to improve care at the end of life. The profiles presented in this report reflect some of the most promising pioneering efforts underway in the field of palliative care. RAND’s Center to Improve Care of the Dying (CICD) staff worked closely with the National Advisory Panel of Americans for Better Care of the Dying to develop selection criteria for groups profiled.

Reluctant Realism
by Margaret R. McLean and Margaret A. Graham published in Issues in Ethics, Winter, 2003 Volume 14, Number 1, Markkula Center for Applied Ethics, Santa Clara University pp. 7-9.

To assist in the goal of improving the Latino health care experience in the San Jose community, 66 adults agreed to participate in a series of three focus group sessions that explored their attitudes and concerns regarding end-of-life care. This article presents their views of death and dying, their interactions with the health care system, and their concerns about discussing these issues with their families.